tag:blogger.com,1999:blog-88529985566505570662023-11-16T02:06:53.772-05:00Messy Miracles in the Making. . .Messy Miracles, a good analogy for our children. Anyone who knows us, life here is usually messy in one way or another. We don't focus on the past messes, just learn to deal with the one at hand and move on. But sometimes, those messes are where the real family moments happen and where true, unquestionable bond of love can be found.Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.comBlogger71125tag:blogger.com,1999:blog-8852998556650557066.post-79846145968030493832019-10-20T11:47:00.001-04:002019-10-20T11:47:43.088-04:00Die Dumplings Die!<div dir="ltr" style="text-align: left;" trbidi="on">
Today is the day we are attacking the dumplings growing out of control in Trayvon. He lovingly named his fast growing tumors, dumplings and his slow growing ones, biscuits. When the doctor came in this morning to discuss his plan and shared some possible side effects of the meds, he simply stated; "Die dumplings die."<br />
<br />
To back track and let you know why we are where we are today, I thought I'd share how the plan changed from day one to this moment.<br />
<br />
July - Trayvon's EBV levels had increased significantly. EBV stands for Epstein Barr Virus. 99% of the world population has EBV and most experienced the virus as a simple cold, never even realizing they had caught it. For some it elevates to the classification of Mononucleiosis. The virus is more aggressive and can cause severe throat pain, spleen enlargment, and high fevers. This is not rare but also not super common. Almost all recover with no further issues. However. . . . if one has a compromised immune system, either due to systemic infections such as HIV or take immunosuppression medications (specifically ones that decrease T-cells (the cells that target EBV) then the EBV can multiply out of control. This is what happened to Trayvon.<br />
<br />
Over the course of three months Tray had lost 17 pounds, had difficulty eating, was very fatigued and needed blood transfusions due to low red blood cell counts. But he did not have a diagnosis that gave us a reason for these issues.<br />
<br />
August 24th - Tray has a severe pain in his side. Thinking he had a possible appendicitis, I took him to the pediatric urgent care. (he has horrible veins and pediatric nurses are so much better at getting IV's). However, due to the tenderness, firmness, and severe of pain in his stomach, they sent him over to the ER. Here he was put on the adult service. Due to Trayvon's unique anatomy (he has many of his organs flipped on the opposite side of his body) we were not even sure where his appendix was, so they did a CT scan to identify and determine if that was the issue. It was there that our new journey began. It was found that he had a large mass in his intestines, most likely a malignancy. While in the ER he recieved a temporary central line in his arm, recieved a blood transfusion and was eventually admitted to the adult oncology floor at Upstate University Hospital.<br />
<br />
The adult world of medicine SUCKS! Nothing can be done in an efficient manner. All of his tests he needed were going to be spread out all over the week. We contacted his transplant team in NYC where they arranged for us to meet with their oncology expert and complete all of the necessary testing in one trip to the OR.<br />
<br />
August 28th - we went to NYC via ambulance for a full workup. CT scans, x-rays, blood, spinal tap, bone marrow aspirate, upper endoscopy, lower endoscopy, hundreds of biopsies, and adnoide removal all happened in the OR. The adnoide tissue proved to be EBV positive and progressing towards malignancy.<br />
<br />
August 31st - returned home to await the results of the pathology report.<br />
<br />
September 5th - results show pre-cancer masses called PTLD (post-transplant prolyphorative disorder). These abnormal cells were in his spinal fluid, bones, lungs, liver, intenstines, and neck area. The best treatment was called cytotoxic t-cell therapy (CTL). The CTLs are actual t-cells (the cells his immunosuppression killed off) taken from donor patients. These cells have all been exposed to EBV and quickly and efficiently kill it off. He would get an infusion and the goal is that the CTLs would seek out all EBV and kill it, and with the virus gone, the tumors would disappear too.<br />
<br />
September 11th - To be admitted onto the CTL study, a patient has to fail another standard therapy, So Tray had a dose of medication that is specifically suppose to work on this particular type of tumor. Then we had to wait three weeks to see if it worked.<br />
<br />
October 11th - Tray has a PET scan in NYC and meets with the study doctor. He appears well so he signs the paperwork for the trial. The PET scan shows advancing disease. He qualifies. They return home that evening. While in the car, his stomach starts to hurt more. Over the course of Saturday and Sunday the pain increases and becomes more continuous. By Sunday night, he was in agony. I brought him to the ER where they did a CT scan and found many more new tumors. The CTLs were going to be ready for infusion on Tuesday so the team had hoped he'd stay stable long enough to get to NY for the trial.<br />
<br />
October 13th - admitted to the pediatric oncology floor. Upper endoscopy shows two large tumors in stomach. Biospy shows a fast growing malignancy called Burkitts Lymphoma. Trial in NYC is no an option. He is no longer stable enough to leave the hospital. TPN (IV nutrition is started) consultations begin to identify the best chemotherapy regime to start.<br />
<br />
October 20th - Die Dumplings Die! Vincristine, Cytoxan, Prednisone are on the menu today. Tomorrow he has a spinal tap to check for cancer in his spinal fluid and will also get chemo into his spinal fluid. If there is no cancer, he will get chemo as a prevenative measure once a week in his spine. If there is cancer, he will have to do it three times a week. He will be in the hospital for at least another week.<br />
<br />
Today he started writing a book. He is thrilled to have a plan and has a positive attitude the majority of the time. He is amazing!! </div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com3tag:blogger.com,1999:blog-8852998556650557066.post-53918547799853724362019-09-02T14:58:00.001-04:002019-09-02T14:58:42.607-04:00Well, hello and long time no see. . . <div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCJhcOZMBlmTFdCI6qnHG9FKCyJu28sc6YXiEtVaezvVQroh5yzs0pE5128K00yvPG3cA3AVrulB4IKeGbYksTZBvCtAxEiNnC9zfKnkUpaSf3GaUJWZTS0yxNAEm_KL0iqfxSmGlesKU/s1600/family2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="690" data-original-width="960" height="230" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCJhcOZMBlmTFdCI6qnHG9FKCyJu28sc6YXiEtVaezvVQroh5yzs0pE5128K00yvPG3cA3AVrulB4IKeGbYksTZBvCtAxEiNnC9zfKnkUpaSf3GaUJWZTS0yxNAEm_KL0iqfxSmGlesKU/s320/family2.jpg" width="320" /></a></div>
It's been a long time. I have been thinking about posting and just felt life was happily moving along so no need to really worry about it. Then the other shoe fell. <br />
<br />
Before that though, I'll run through a few things that have been happening since the last update. <br />
<br />
<b><u><span style="font-size: large;">1.</span></u></b> Kids went and got older, despite me telling them not too. <br />
Annette is 29. Oh that is so much harder to see than say!<br />
Joshua is almost 24 (September 21st)<br />
Tray is almost 21 (November 7)<br />
Marriela is 17<br />
Cody is turning 14 (September 9th!) and<br />
Sergio is 13. <br />
<br />
<span style="font-size: large;"><b>2.</b></span> Some kids graduated, moved on to new schools and stopped going to school altogether. <br />
Joshua graduated three years ago.<br />
Tray graduated last year.<br />
Marriela is set to graduate in four more years.<br />
Cody is also set to graduate in four more years (BIG graduation party!) and has started at the high school.<br />
Sergio no longer goes to school but has everything provided at home through the homebound program. This is working wonderful for him and he's been incredibly healthy.<br />
<br />
<span style="font-size: large;"><b>3. </b></span>We moved.<br />
We moved into our previous house the day before Christmas eve 2002 with three children (Annette, Joshua, and Tray.). It served us incredibly well! We went through many, many challenges in that home and it held both heartbreaking and breathtaking moments of love and pain. We adopted 2 more children, fostered another that sadly passed, and cared for our nephew, having as many as 8 kids at a time in the house. Hard to believe all we went through! But it was getting far to small. We found the house that perfectly met our needs last year to allow our growing children room to move and spread out. In June of this year, we moved in. I spent the summer unpacking, cleaning, painting, and planting to make it our home. We LOVE our new home and it is only a few blocks up the road from our old house. <br />
<br />
<span style="font-size: large;"><b>4.</b></span> I finished my second masters, this one was in Special Education, so I can maintain my position as a special education teacher in the Syracuse City school district. This is my tenure year! I love my job and my school. <br />
<br />
Peter finished his masters in Mental Health Counseling, worked at Vera House for almost 4 years and now is doing private online sessions and in home family counseling in the Syracuse area. He loves the freedom and flexibility he now has to adjust his schedule to meet the family needs as I work daily at school. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlHGKIPG53Tc0Ck673YAwxkZusD3epioW7jWz-pCvBWuw7Rjncg5yjDk3DINtbXOU0JBql4uwlauBrUNN_X0gQ_MVxzb3CJ0QFmmLPPkQ3I1YDx5uXCrAUBopGbN0GBUHDon5OMObNZ2s/s1600/Annette.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="620" data-original-width="482" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlHGKIPG53Tc0Ck673YAwxkZusD3epioW7jWz-pCvBWuw7Rjncg5yjDk3DINtbXOU0JBql4uwlauBrUNN_X0gQ_MVxzb3CJ0QFmmLPPkQ3I1YDx5uXCrAUBopGbN0GBUHDon5OMObNZ2s/s200/Annette.jpg" width="155" /></a><br />
<b><span style="font-size: large;">5</span></b>. Kids health:<br />
<b><span style="color: #674ea7; font-size: large;">Annette:</span></b> Doing great! She struggles with moving ever since her severe knee infection that landed her in the hospital for over 6 weeks! But overall, she's happy and healthy and lives her life by her rules!<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7eETX0ZFD6d7pCRbwzBQvd_S3el2jNGRBmL076Lkd_Gk1lJuNs1t3Kil_iS_6iyiEPfLiRjXWMQ3CmdGkLBk-96116ML7q2KJmcm2SdyeoCY1SnlpWR2_dUcZX0NX41wUS9dd-Y6rLhM/s1600/joshua.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7eETX0ZFD6d7pCRbwzBQvd_S3el2jNGRBmL076Lkd_Gk1lJuNs1t3Kil_iS_6iyiEPfLiRjXWMQ3CmdGkLBk-96116ML7q2KJmcm2SdyeoCY1SnlpWR2_dUcZX0NX41wUS9dd-Y6rLhM/s200/joshua.jpg" width="150" /></a><span style="background-color: white;"><span style="color: blue; font-size: large;"><b>Joshua:</b></span> </span> Has successfully weaned off of his biweekly IVIG for seizures. He still seizes daily but not more than he did with the IVIG so we are happy to take away one additional medication. He has had a port for over 13 years with no issues at all. . . then all of a sudden, he developed what was thought to be a hematoma. Over the course of the past month, it has slowly grown into a large sore that culminated in an emergency surgery tomorrow morning to remove the port that apparently has decided to try and come out on its own! Never saw anything like this in my life. Joshua has had some sort of central line for 18 of his 23 years of life! First for his cancer treatment, then for IVIG due to an immune deficiency, then for IVIG for seizure control. He's excited to not have one anymore!! <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFSU65_iWnhSoJKKE3Ks0EHYH00DdgOiMR0qiTARKhYzvv4_xYQW3GBhh3asLoyVYSKtNb1YRSRaf_TVlantfQqDp3dMx7SZtYw3iGJSEjpzAdFleqstyyTCmUcqJyPZvRznUvNbZojNs/s1600/family.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="925" data-original-width="960" height="192" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFSU65_iWnhSoJKKE3Ks0EHYH00DdgOiMR0qiTARKhYzvv4_xYQW3GBhh3asLoyVYSKtNb1YRSRaf_TVlantfQqDp3dMx7SZtYw3iGJSEjpzAdFleqstyyTCmUcqJyPZvRznUvNbZojNs/s200/family.jpg" width="200" /></a><b><span style="color: magenta; font-size: large;">Marriela: </span></b> Has had an incredible summer, despite the move and recent changes in the family. She went to program for 3 weeks this summer which was a HUGE accomplishment! She still has some CRAZY ideas, like asking Santa for God's number to find out the DNA of every African American to find out who she is related too. Must give her credit for her resourcefulness in using Santa as her in with God, who she has sent letters too in the mail. <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTtCnXQVKSzdLkCcyba6sqnX6qjCmJ_0KxfVU7c7VfgexoXoGWXsDC33MFSkFm2CYrbYt0OPgnFew6RSAXiUaCDsX3rchaaNODqHAC95ThvEtorYbRdF44oE9Qfq7G65Rx2v3x2KgOHJQ/s1600/cody+and+mom.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="960" data-original-width="467" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTtCnXQVKSzdLkCcyba6sqnX6qjCmJ_0KxfVU7c7VfgexoXoGWXsDC33MFSkFm2CYrbYt0OPgnFew6RSAXiUaCDsX3rchaaNODqHAC95ThvEtorYbRdF44oE9Qfq7G65Rx2v3x2KgOHJQ/s200/cody+and+mom.jpg" width="96" /></a><span style="color: #38761d; font-size: large;"><b>Cody:</b></span> Growing like a weed!! He's now taller than me with size 13 feet and he only started puberty 5 months ago. I don't like where this is going! He is impossible to fit for pants as he's so skinny but so tall that finding things that are long enough but don't fall to the floor with every step is my new challenge. He's also started playing football for the first time this year. He loves it! <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8LJ17KqTXsgOmaJTeBvYoQ0EFmClvc1uyskHfCQOm7B2uYY590NjnIhycYYDix29lHfUWuCh2nqppPg1pslg5sYybhmYZhNv7-ArMtfi_IuZWPNcBIpj-DMY-WeDkrk2_bM9EBN9nfAQ/s1600/sergio.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="960" data-original-width="466" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj8LJ17KqTXsgOmaJTeBvYoQ0EFmClvc1uyskHfCQOm7B2uYY590NjnIhycYYDix29lHfUWuCh2nqppPg1pslg5sYybhmYZhNv7-ArMtfi_IuZWPNcBIpj-DMY-WeDkrk2_bM9EBN9nfAQ/s200/sergio.jpg" width="96" /></a><span style="color: cyan; font-size: large;"><b>Sergio:</b></span> Doing amazing! He is still TPN dependent and still has all of his medical needs, but has been healthy now for over a year with no fevers or infections! His growth slowed down (he's very small for his age, but was growing steadily) over the last year, so we adjusted his TPN and should see a little more growth. <br />
<br />
and finally, <span style="font-size: large;"><b><span style="color: red;">Trayvon</span></b>:</span><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX4j48t3ZqilQ10iIICkZS_M9A5d2yQNYnvWLE5dR_My6tuTZrDKD9LbuNlCbpG7q-wJyUOk6KrGR1Dftk8GeHEVfM0zFlS8OtGMAlKWQUE-ebwQpYeULFX-cCb6eyHDD7cTP1QJ1lgK8/s1600/Dad+and+Tray.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX4j48t3ZqilQ10iIICkZS_M9A5d2yQNYnvWLE5dR_My6tuTZrDKD9LbuNlCbpG7q-wJyUOk6KrGR1Dftk8GeHEVfM0zFlS8OtGMAlKWQUE-ebwQpYeULFX-cCb6eyHDD7cTP1QJ1lgK8/s200/Dad+and+Tray.jpg" width="150" /></a>Tray has had a difficult year. First he decided he really wanted to try going out into the real world, but do so without the right supports or the right environment. As such, he struggled with taking his meds and becoming very depressed, resulting in a trip to the ER. There he learned he had a high fever and was septic due to a large pneumonia. He was restarted on all of his meds and was doing much, much better and made the decision himself to return home to get himself well and then move out the right way and to the right place, with the right supports. However, even after healing from the pneumonia, he was still struggling with severe exhaustion, increasingly low red blood cell counts and blurry vision. He began seeing a hematologist and received blood transfusions for his severe anemia. I knew something was very wrong and at his annual cardiac biopsy shared my suspicion he had PTLD. Fast forward 2 months. Tray has PTLD, confirmed by scans and biopsy. He developed a severe pain in his left side that prompted me to take him to the ER for evaluation. The CT scan identified a clear and concerning mass in his intestines and colon. He was admitted to the Upstate oncology unit. We were in contact with NYC transplant team who advocated we bring him there for a thorough and complete workup to be reviewed by a specialist in PTLD, so we transferred by ambulance in the middle of the night to New York. He underwent many tests and it was discovered he had severely swollen adenoids (they are made of lymph tissue and therefore are most likely rapidly growing cancer cells) causing him to have sleep apnea. We had several more blood transfusions and biopsies of his entire GI tract where there was evidence of problems everywhere. In addition, a large and active ulcer was discovered and may be the source of his low blood counts. <br />
<br />
We are back in the world of cancer. He has been accepted by the pediatric oncology team here in Syracuse and NYC so he will be cared for in the developmentally appropriate manner he requires. He seems to be ok mentally right now, as I am very careful that we never spring anything on him without warning. He knows he has cancer and knows he needs chemo. He knows he'll lose his hair but as long as we get 'cool do rags' he says he's ok. <br />
<br />
Life is crazy sometimes and just when things were settling down, another curve ball comes our way. None of our child except Cody, should be here. Every single one was given varying chances of making it to a given age. Joshua's tumor had a 95% fatality rate even with treatment, he's here. Annette was given 2 weeks left to live when we had her Make A Wish trip. . .She's still here. Marriela was given no chance in the NICU where she was born at only 26 weeks and 1 pound. . . she's still here. Sergio. . . well hell, everyone knows that kid shouldn't still be here, but clearly forgot to let him know that! Tray was literally given no chance of survival the night he was shocked three times to get his heart to stop beating 300 beats a minute for hours. He then went on to have a successful heart transplant despite many odds against him. . . he will continue to be here. That's all there is too it. <br />
<br />
Well, it's not the light hearted update I'd like to have done, but I know there are those who don't know how things have been recently and this felt like an easier way of updating our craziness. <br />
<br />
Love to all,<br />
Renee<br />
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Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-69534542000497602452017-10-01T11:24:00.000-04:002017-10-01T11:24:42.059-04:00Potato Heads Gone Wrong!!<div dir="ltr" style="text-align: left;" trbidi="on">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXNjavu7iPjr91jDDnkTyZaSWdMJ3ObpRTIlYUXyeJIeLcVDM6aTekw0c30mFu4iJFiiCPar-iMFyF9D6UeSNR1O1KiHrUDHIxWBgePKZFBNcn0fs1tYo34IlDI2Ek2PiZX7izlJPOveU/s1600/phhospitaloutside.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXNjavu7iPjr91jDDnkTyZaSWdMJ3ObpRTIlYUXyeJIeLcVDM6aTekw0c30mFu4iJFiiCPar-iMFyF9D6UeSNR1O1KiHrUDHIxWBgePKZFBNcn0fs1tYo34IlDI2Ek2PiZX7izlJPOveU/s200/phhospitaloutside.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">When tethered to IV poles, Potato<br />Heads offer great friendship.</td></tr>
</tbody></table>
Ok, this post has been in the making for years. Anyone that knows me and/or my son, Sergio, knows we have an ongoing struggle with the love/hate relationship going on between my son and his Potato Heads. I've concluded after years of observation and data collection (see evidence below) that they are evil. <br />
<br />
Sergio has an innate propensity for destruction. I have come to accept this personality 'quirk' so to speak. However, this 'quirk' elevates itself to a entirely new level when one of those cute sweet little potato heads arrive in the house. Sergio LOVES, LOVES, LOVES Potato Heads. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDdHt3tLhHgaH0ln-7ZgIzvT11vl56N7nD_qjvn9C2YHELCGTz9bF3mugl30EwsM67wNRFfy6bqZYRWgVmu7rmt_gbIg3MyXlisTgn12j8sCYdM0zzYNKv5gNfQ5BCZMRSBoCwf0PRgQI/s1600/phinwrapper.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDdHt3tLhHgaH0ln-7ZgIzvT11vl56N7nD_qjvn9C2YHELCGTz9bF3mugl30EwsM67wNRFfy6bqZYRWgVmu7rmt_gbIg3MyXlisTgn12j8sCYdM0zzYNKv5gNfQ5BCZMRSBoCwf0PRgQI/s200/phinwrapper.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Saved Potato Head</td></tr>
</tbody></table>
Sergio (and I by default) have been in the hospital well over a hundred times in his short life. Everyone of these stays has been made better by the comforting presence of a beloved Potato Head. So much so, they started keeping one at the nurses station for middle of the night admissions when the playrooms would be locked. EVERYone knows that Sergio = Potato Head. <br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcRZfExCfhjkP6XbS19Ufa23i84tenaEO4wdfv0LyOyfnWwIUQj4AKnEJByuNxsFMD59xuvYmIH0VKuG0dI-z80pXhC7it-ir1SHAd-7IRBnHJ31MJ09jpGRmLYX-u0fIVaBvD0vHx9Pw/s1600/phintoilet.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcRZfExCfhjkP6XbS19Ufa23i84tenaEO4wdfv0LyOyfnWwIUQj4AKnEJByuNxsFMD59xuvYmIH0VKuG0dI-z80pXhC7it-ir1SHAd-7IRBnHJ31MJ09jpGRmLYX-u0fIVaBvD0vHx9Pw/s200/phintoilet.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">No, it does not fit. </td></tr>
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What started as a sweet love of a toy of the past has evolved into a demonic possession and master plotter of destruction. The first signs things were going awry began with potato head pieces being flushed down our toilet. I assure you, there is only one piece that comes with the potato head that can safely make it down, and that's the ear. Other than that one lone piece, NOTHING else makes the notorious bend in the toilet. I am now a master plumber and can vaccuum out the water, remove the toilet, declog the offending piece, replace a wax ring, and reconnect toilet in less than 15 minutes. Not a skill I'm proud to have developed, yet here we are.<br />
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From the toilet, we noticed Sergio began to find ways to 'hide' the heads, only to then go mad looking for the missing potato heads. His favorite place is over the back fence into the neighbor's yard! Why? Who knows, I can't for the life of me figure it out, but he's lost more than we can count to the abyss beyond the fence. (then he added shoes, plastic pumpkins, and a variety of other items!)<br />
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At Disney this summer Sergio managed to find (and therefore I bought) several potato heads. He then deposited one in the It's a Small World ride's river, another made it into the river at the Jungle River Ride, and yet another was left abandoned in the waterfall display at the Great Tiki Lounge. Sigh. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3Mq3jgYTAqYUNbFuMuhmQra3avEBxWewx4hSINEfYPliHpw-Z1yJjFDdCXkjXuduaBDG-ur117EuEXSQfaQRWqnTPUTTz6Wg_rgnFPsYo0E45OrUUw5X6ynbZCAPxQznyLyTbCJduKNk/s1600/20170630_114212.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3Mq3jgYTAqYUNbFuMuhmQra3avEBxWewx4hSINEfYPliHpw-Z1yJjFDdCXkjXuduaBDG-ur117EuEXSQfaQRWqnTPUTTz6Wg_rgnFPsYo0E45OrUUw5X6ynbZCAPxQznyLyTbCJduKNk/s320/20170630_114212.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Very proud of his recent potato head contribution to the Jungle River Ride at Disney World.</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi316m5IXFCLz8mYRH0zhCCyqOcFOy8g3AIKDXgMCiDmeVtz3J-GGa6Dz9Y9JIGmb7TD28I4hGssapIHrTY4_MS9yo6CZ_2pEkgPO99ZyPslew9rOXKbPsPp9cn_zD4eFuiLDVEwYiYgYY/s1600/smashedph.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi316m5IXFCLz8mYRH0zhCCyqOcFOy8g3AIKDXgMCiDmeVtz3J-GGa6Dz9Y9JIGmb7TD28I4hGssapIHrTY4_MS9yo6CZ_2pEkgPO99ZyPslew9rOXKbPsPp9cn_zD4eFuiLDVEwYiYgYY/s200/smashedph.jpg" width="200" /></a><br />
Most recently Sergio has taken to having the Potato Heads actually destroyed! He was beyond giddy when he managed to get one out into the middle of our road and watched it get run over. He couldn't stop laughing for hours as he replayed that thought in his mind again and again. When we went to the cabin a few weeks ago, he successfully threw his potato head under the golf cart and watched it get destroyed. He then proceeded to successfully deposit the pieces in the pond, for future adventures. Sorry Brian Bisgrove Home of Courage!!! <br />
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Most recently Sergio destroyed my blender by blenderizing one of his recent new potato head additions. The Potato Head faired far better than the blender I might add! <br />
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If they didn't make him so darn happy, I would ban them for ever. But. . . . as you can see, when you're life revolves around crappy visits to the hospital, who am I to take that joy away. <br />
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So we'll just do our best to limit the destructive nature and foster the positive side of his love for the backless, naked toys he loves so very much!! </div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-41935409651957285532017-08-14T13:02:00.000-04:002017-08-14T13:02:23.598-04:00Planning by Marriela<div dir="ltr" style="text-align: left;" trbidi="on">
As most know, our life is a bit 'different'. But isn't everyones? No one family is like another. So we have a different spin on that term 'family' that most, but certainly not the only ones in the world. We have met other families that look and feel like ours with just variations in the shades of skin, types of medical issues and local of residence. But they are farther and fewer between than I would like.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7hMI4acis-012UHv3LQimKO5nsLRq5OlPm_mXo9yjSex4vJYwhaghVgN88Ggwl3fF0S-CCv6vFEImHAyIgHw1tF2WInAPNEeRnkObTuFUZ5OS8VvgFBEYaqm3t5DA8MA71qxcVVASbfA/s1600/00A.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1024" data-original-width="1536" height="133" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7hMI4acis-012UHv3LQimKO5nsLRq5OlPm_mXo9yjSex4vJYwhaghVgN88Ggwl3fF0S-CCv6vFEImHAyIgHw1tF2WInAPNEeRnkObTuFUZ5OS8VvgFBEYaqm3t5DA8MA71qxcVVASbfA/s200/00A.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Marriela at 16 months.</td></tr>
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That said, I love being able to share some of the inner happenings behind these walls because 1. they amuse me and most that are privy to our conversations and 2. oh heck. . . I don't know, I just think some of the things that come out our family conversations are just too good to keep to ourselves. <br />
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Today I thought I'd share Marriela. <br />
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Marriela - the source of most of our "What the . . . ??? moments never ceases to amaze us. She struggles literally every day with her disabilities and mental health challenges. Until you are faced with a child who can't "think straight" or "make her mind work the way it needs too" as she so precisely verbalizes, you can't understand how devastating it is to witness. However, these same challenges create for some incredibly comical conversations and life planning. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX3ODwlTt2OKgPp-UY5FRbpus2WuD5lkoZNuhjW3u0SNRfEFEpsi85b8dfc5H40Fc6HDWN0GHW50bVK_MPWCiYpA_9JJdx9okO04-0QYViUSOeyWXpXGTynktMuv2PKx-91cG4qiZkv6s/s1600/IMG_3566.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjX3ODwlTt2OKgPp-UY5FRbpus2WuD5lkoZNuhjW3u0SNRfEFEpsi85b8dfc5H40Fc6HDWN0GHW50bVK_MPWCiYpA_9JJdx9okO04-0QYViUSOeyWXpXGTynktMuv2PKx-91cG4qiZkv6s/s200/IMG_3566.jpg" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Marriela at 8 years old</td></tr>
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As most of you know, Marriela is committed to having LOTS of children most days of the week. Then once in a while she proclaims she'll just adopt them all from (insert country of interest at that very moment - as it literally changes by the hour). She is going to find her husband on Match.com (since recently she learned that Harmony.com is not optimal for finding Italian men - don't ask where that information came from - sometimes it's better not to delve too deep into her research methods.). Her husband is going to be half Korean, half Italian, and half Chinese. Yep, he's 150%. I'll be talking to her teacher about reviewing fractions with her. He must be 6'7" (and of course those nationalities are all super tall by nature. . . NOT), and have blue eyes (yep, genetics is not her forte clearly). Her children are going to be Haitian, no idea how that works but she's committed to a Haitian child. <br />
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<tr><td class="tr-caption" style="text-align: center;">Marriela at 12 years</td></tr>
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Her desire to adopt a Haitian child is not new for me, as I have always been drawn to the desire to adopt from this impoverished part of the world as well. But Marriela has recently taken to researching Mission Trips to Haiti. In her words exactly "I'll bring my pink water bottle I got for my birthday and give kids and babies drinks of my water to make them stay alive. Let's send all of my clothes to girls in Haiti." She truly has a heart of love, but until she shares some of these thoughts you don't always see it. Many times that heart is clouded by anger and she says and does things that hurt so when these moments shine through, I find it important to note them. <br />
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Marriela plans A LOT for life and is often frustrated by the time constraints the world places upon her desire to achieve these goals. For example she bemoans daily that she "is not getting old enough fast enough!" She wants to have children by 18 years of age so she is not "old' when they are little. She apparently deems me to be practically in the grave as I was almost 40 when we adopted her! In fact, she recently decided she was going to develop an 'adoption plan' for when Peter and I die. Yep, apparently we're much older than we think we are. She wrote a letter to Santa Clause and told him he was going to be her new father (and Trayvon's as well) and they will come to the North Pole to be elves with him. I have yet to get a written response from the big man up north, but I'm pretty sure she's bounced from naughty to nice list so many times in a year, he's quite familiar with her. LOL Like I said, she's always planning. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYNhaXUUI7whwoIRD0tPwACi_OWhmo9Z8pA38NoCpQxzhLvFSk2bnDaPQZzBrm-kcBIM4HNPU1Fa8EAmg7HNLGazSVRrD8stB_iDYyBFfrqXcuJ69U-YG0NutuZTDO-82V4j25_MOuolM/s1600/IMG_0205.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYNhaXUUI7whwoIRD0tPwACi_OWhmo9Z8pA38NoCpQxzhLvFSk2bnDaPQZzBrm-kcBIM4HNPU1Fa8EAmg7HNLGazSVRrD8stB_iDYyBFfrqXcuJ69U-YG0NutuZTDO-82V4j25_MOuolM/s200/IMG_0205.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Marriela at 14 years old</td></tr>
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Another plan she has is to be homeschooled. This is new and is directly related to her struggles in the school. At the end of the year she was having many bad days and required restraining by staff to keep her safe as she was taken to a safer location than the classroom. She is mortified once she is cognizant of her surroundings again that she was so out of control. It's not in her control. Her mind starts a war within it and she states it "tells me to be bad" and "it gets stuck so I can't hear anyone and use my strategies because my brain is crazy acting". This year she is transitioning to the high school and I too have some trepidation as to how this will play out. She has a one on one aide but often needs two to one aides when she is having a bad day. She had a very gentle and supportive counselor at the middle school and we don't know what resources will be at the high school which is causing her high anxiety. Therefore, her solution is homeschooling. Well. . . it can't be me, I'm working. It can't be daddy, he's working. Sooooooo, she sent a letter to God in heaven to ask him to come to her house to be her teacher. She put the letter in the mail and addressed it simply to "Heaven". Again, still waiting on the response. Serious points for having a back up plan! <br />
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As a parent, the hardest part of being responsible for this child, is the unknowns. I know for the most part the levels of support the other children will need. Joshua will need 24 hour care for life. He will be with us for a very long time until the laws change that allow staff to be present overnight. Trayvon will need support, but in a different way. Not direct support per say, but lots of guidance throughout life to help him navigate post school transitions, where and how to live independently, and the world of employment. He has cognitive capabilities for academics, but struggles greatly with daily living responsibilities and life based challenges. Cody will be going to college, get a good job, have a beautiful family and one day, probably responsible for at least his brother Joshua. Sergio will need life long care. Though, the reality is, Sergio's "life long" will not be until adulthood in all likelihood. He has cheated death so many times I've lost count. He is dependent upon IV's for life sustaining nutrition and hydration. However, his organs do not like this arrangement and are now rebelling. His liver is struggling. He will be with us for as long as I can fight for a quality of life worth fighting for and only he will be able to dictate when that time is. So until then though, he's total care or we'd have no plumbing left due to his obsession with flushing inappropriate items down the toilets! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3dPcJQcHl0VSjxWegegJnZejOXbmeSyiWlEbumAnsOjCt1psC3ZN7iuKRZ_RMTziQ2KM9RVSKucfqa8PDRYuza3p2V7UI8WzBwcqlu4_nAv6_TINl7wuPTMMAKC5ke-bld0lF2I04MvU/s1600/IMG_2409.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="540" data-original-width="720" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3dPcJQcHl0VSjxWegegJnZejOXbmeSyiWlEbumAnsOjCt1psC3ZN7iuKRZ_RMTziQ2KM9RVSKucfqa8PDRYuza3p2V7UI8WzBwcqlu4_nAv6_TINl7wuPTMMAKC5ke-bld0lF2I04MvU/s320/IMG_2409.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The whole crew. Several years old, but one of my favorites!</td></tr>
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And then there's Marriela. Will her meds one day allow her to live with supportive staff? Will she need life long 24 hour care to ensure she does not harm herself? Will she ever be able to have that family she dreams and plans for? I just can't answer any of those questions right now, but she's 15 years old as of this month. Adulthood is rapidly approaching and how to prepare for her needs is by far the scariest and most difficult of all the children. Sigh. But also worth every ounce of energy she takes. <br />
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And as she just walked away, after being told to clean her room she states. . . "I smell some goodness!" (upon smelling the mac n cheese on the stove) followed by; "I don't want legs anymore so I don't have to go upstairs to clean." LOL <br />
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Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com1tag:blogger.com,1999:blog-8852998556650557066.post-82804940663974577532017-04-22T10:29:00.001-04:002017-04-22T10:29:24.226-04:00Who's my birth mom?<div dir="ltr" style="text-align: left;" trbidi="on">
As most of you know we have adopted children. Four to be exact. We also have two homegrown children (biological) for a grand total of six. Yesterday we were driving along to go do some summer clothes shopping and this very enlightening conversation ensued . . .<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY0ajmCirM-vU3qCwh0KLCOwyq0pRwsehKOrNBojV1ZXcStTBmFnjzIXqGR6HdmcOj-aP7AV0Vv_5tr-lrTX7DE6pUi6ODXy-Jw4XpZNTH4NwbV2c3jvBEMP_cBc9CZGgax24ei2jyuNI/s1600/lunchmarriela.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY0ajmCirM-vU3qCwh0KLCOwyq0pRwsehKOrNBojV1ZXcStTBmFnjzIXqGR6HdmcOj-aP7AV0Vv_5tr-lrTX7DE6pUi6ODXy-Jw4XpZNTH4NwbV2c3jvBEMP_cBc9CZGgax24ei2jyuNI/s200/lunchmarriela.jpg" width="150" /></a>Marriela has been processing being adopted for some time now. She is angry at her birth mother because she insists she gave her a disability by doing bad drugs. (she is aware her mom used bad 'medicines' but learned about drugs in school in health class and now uses that terminology). But at no time have we ever associated her mother in a negative way or implied she has 'caused' any issues for Marriela. So anyway. . .<br />
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Driving along and Marriela starts yelling about how she wants her birth mom (typical when I've told her "no" to something she wanted, and in this case, it was to eat lunch at 10:30 am). She then announces "Tray wants his too!" Which we have not heard and clearly surprised Tray, as he was now being dragged into the conversation/argument. As per normal protocol, we put on music and try to change the subject. Marriela goes on to tell us that she bets she is an only child. Tray suddenly throws out there "I have a brother." I throw him a total look of surprise and ask how he knows!?? He states "You told me." <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBGyran9H9UCWD6hR5MfliuvIVly87wqdvDnvWuXBNKNbrKjvLbuzAItQE7ogNUzTRu1YTf6H2cAaapSU9dk0xkceKBFGPMnDQ0dhDXrMrC2YO1u6_00QhNqtQ-fs16BllZAV0U4OZj7U/s1600/lunchtray.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBGyran9H9UCWD6hR5MfliuvIVly87wqdvDnvWuXBNKNbrKjvLbuzAItQE7ogNUzTRu1YTf6H2cAaapSU9dk0xkceKBFGPMnDQ0dhDXrMrC2YO1u6_00QhNqtQ-fs16BllZAV0U4OZj7U/s200/lunchtray.jpg" width="150" /></a></div>
Now it's entirely possible I did tell him that, and he does have a half brother in Georgia. But I didn't recall actually sharing that with him, but now, we have information out there Marriela is going to throw back at me! So now I sit there and contemplate how she's going to ambush me with Tray's new knowledge he's shared and how will I respond. Joshua, my homegrown son, is sitting next to me in the passenger seat. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitY7AavnkNaggr40WuWdQN2e3VG8nnFVvN5GdMSDO-ZWzHclvw0gJUJpTgFRzz8PtnnzMLtnl9tWNzhBUwa5w4_VxByNSHa4IxjN2gNCcjs_xUCL_LL91j8bYA_yYu5H4bEHzhOlBRnv8/s1600/lunchjoshua.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitY7AavnkNaggr40WuWdQN2e3VG8nnFVvN5GdMSDO-ZWzHclvw0gJUJpTgFRzz8PtnnzMLtnl9tWNzhBUwa5w4_VxByNSHa4IxjN2gNCcjs_xUCL_LL91j8bYA_yYu5H4bEHzhOlBRnv8/s200/lunchjoshua.jpg" width="200" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitY7AavnkNaggr40WuWdQN2e3VG8nnFVvN5GdMSDO-ZWzHclvw0gJUJpTgFRzz8PtnnzMLtnl9tWNzhBUwa5w4_VxByNSHa4IxjN2gNCcjs_xUCL_LL91j8bYA_yYu5H4bEHzhOlBRnv8/s1600/lunchjoshua.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><br /></a></div>
<span style="clear: left; margin-bottom: 1em; margin-right: 1em;"><span style="color: black;">Joshua turns to me and says "Who's my birth mom? The whole van lost it! Through my fit of laughter I said, "I am silly!!" He responds with. "Oh then do I know who my birth dad is</span></span>?" I can't make this stuff up! I replied that we saw him on the day he was born right from my stomach. So he says "Well then, who's my birth brother?" I asked him who he thought was his birth brother and he says "Trayvon." I just said "Yep, he's your birth brother from another mother." and left it alone. LOL <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAIQNIauU6tHrldVvw2C-JdabW-nXl-zHjBWIAzDpgKhKXjO_fWqzJK5Vhpiq6slXRosYZZ98fYCm5fF8uimwfNYGsB3owTU2cfUKspq9cZUZzPAprGvf9fNwrdWN603qRPEsRI8Wyk18/s1600/museumfun2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgAIQNIauU6tHrldVvw2C-JdabW-nXl-zHjBWIAzDpgKhKXjO_fWqzJK5Vhpiq6slXRosYZZ98fYCm5fF8uimwfNYGsB3owTU2cfUKspq9cZUZzPAprGvf9fNwrdWN603qRPEsRI8Wyk18/s200/museumfun2.jpg" width="200" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhDtAu1OloMMVtAKKfyGj7Pu2vZI5k7GmJphgbHK5Ad6HPgbVWl91xWyLH3KpmQpGpuKr_K-fcrAvlYimCESPKJzZ5jNatSDkcNfcl57jk7oXXIxeZf3l8_JOimD1bhacI_KLatgzF40I/s1600/zoo.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhDtAu1OloMMVtAKKfyGj7Pu2vZI5k7GmJphgbHK5Ad6HPgbVWl91xWyLH3KpmQpGpuKr_K-fcrAvlYimCESPKJzZ5jNatSDkcNfcl57jk7oXXIxeZf3l8_JOimD1bhacI_KLatgzF40I/s200/zoo.jpg" width="200" /></a>At that point we arrived at the store. I dropped them off with Joshua's staff, Timmothy, and went to return a fan at the store next door. As I drove that 1 minute trip to the parking lot next door, I realized, that many of my children do not necessarily recognize they are adopted or not adopted. We love our children fully and unconditionally regardless of their origins and how we came to know them. I was honored that Joshua was as content to be adopted. </div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com1tag:blogger.com,1999:blog-8852998556650557066.post-57624775556617380642017-04-19T21:50:00.002-04:002017-04-19T21:50:51.273-04:00Easter and Update<div dir="ltr" style="text-align: left;" trbidi="on">
Happy Easter!! It was an absolutely beautiful day to celebrate, relax, take in family, and eat. . . a lot. So that's what we did. I also dealt with my first cold in a very long time, and I'm not proud to say this. . . but I am a baby. With all that's happened with the kids, all they have been through, all I've witnessed and lived through with them. . . this cold is the pits. But, alas, I refuse to let it ruin my vacation.<br />
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Today we went to the MOST museum. We ran through it at the speed of light, as that's what we do, we don't go nice and slow, taking in the sights and sounds. No, we find the bathroom, look at things quickly, run up the climbing apparatus (yes, even Joshua and his dutiful staff went up and down the fun meant for those 12 and under). Then we hurried out of the MOST into the VR (I'll remind you what that is if you forgot, further down in the update) in the pouring rain. Joshua was highly distressed at getting wet. We discussed the plans for tomorrow and all agreed on the lazy river pool at the local YMCA.. .except Joshua. His reasoning: "I don't want to take another shower." So we rationalize that he doesn't need to 'take an actual shower, just rinse off', but that still didn't sit well. So I'm taking him to walk the track while the others enjoy the pool. <br />
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So what else has gone on the past 2 years. . . laundry. Lots of laundry has happened in the past 2 years. Hmm. Oh yeah, more laundry and a new washer and dryer because we broke the old ones with the laundry. <br />
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Nettie turned 27 a few weeks ago, Sergio is almost 11 (May 2), Tray is now 18, Marriela is 14, and Cody is 11. For her birthday,, Annette asked for tickets to; drum roll please. ddddddddd Magic Men (AKA - cheap version of Magic Mike). She is now the proud owner of three floor level tickets for the half naked bumping and grinding of sweaty men. Oh yeah, parents of the year here!! <br />
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We're updating our two bathrooms and the kitchen, as well as fixing a few things that are less than optimal, such as the almost non-existent stair railing that Joshua fell through during a seizure. I thought I'd love the process, yeah, not so much. I like the 2"x2" paint swatch on the beautiful paint brochure, and so that's what I picked. I like the 2'x2' pic of counter top on the website, so that's what we picked. I liked the sink, faucet, hardware, floor, etc on the website, so that's what we went for. We tried doing the store thing, and both Peter and I were beyond overwhelmed by it all!! Too much to look at, no idea what went together, so we're piecing our entire kitchen together by 2"x2" thumb size pics on a screen or in a brochure and will either love it or hate it, but it HAS got to be better than the disaster we currently call a kitchen. So I figure, it's a win/win. At least for the bathroom the guy came with samples and let us touch them at the dining room table, still have no idea how it'll look, but hey, we had samples!!! The current tub has a dangling safety rail after Joshua had a seizure and pulled it part way out and then Trayvon slipped in the tub, grabbed the railing and finished off the wall with one good pull. So I figure our pretty new marble shower surround and white tub will be an upgrade from the peach beauty we currently call a tub with the gaping hole in the wall! I already bought a new shower curtain and will decidedly use it to gauge the new wall color, I saw a pretty one in my brochure. <br />
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Ok, last little update. . . and it's been on my mind for a while. Some may relate, others may not. But for me, the struggle is real. Underwear.<br />
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We never have enough in the house, the drawers, or the laundry. Someone ALWAYS needs underwear. Joshua needs two pairs a day. As a mother a part of me wants to scream "WHY?!" The other part says; "Shhhh, you probably don't want to open that Pandora's box." But, Marriela, then Cody, and then Trayvon. . . I put Peter out of his underwear deficiency misery by buying him three packs of 6 (with a free extra pair in each pack) for a grand total of 21 pairs of underwear. But do I really need to do that for EVERYONE in the house? I'm stubborn and I stand by the fact that every child and adult in this house has a minimum of 8 pairs of underwear with most having far more than that, How does one go through that many pairs in a few days time?? This vacation is wearing me thin on this issue though, and I feel as though there will be an Amazon order going in. Then my Facebook feed will be all lit up with all different types and styles of underwear for the next three months! <br />
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Well, my cold is officially driving me to bed with some Vick's vapor rub and tea. I missed you all and look forward to updating you more on some of our daily antics more often.<br />
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Love, Renee<br />
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P.S. VR is our 12 passenger van that looks a lot like a 'creeper' van with it's tinted windows. Peter once referred to it as the VR when I insisted he take it out with his friends one night. It stands affectionately for "Vagina Repellent". <br />
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Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-16827136770398056202017-04-15T22:07:00.000-04:002017-04-15T22:07:33.663-04:00A wee update<div dir="ltr" style="text-align: left;" trbidi="on">
It's been a long time since I last posted. Almost 2 years. As it really isn't possible to update you on two years of life in the Curkendall household, I'll go with the easy things. <br />
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1. We have been hospital free for a very long time!! Sergio is now consistently treated at home with IV antibiotics and all of the other 'stuff' that gets him better in the hospital, right at home. It's been a game changer. Unless he is getting progressively worse after several rounds of antibiotics, we don't so much as step foot in the hospital. He's been there 3 times in the last 23 months, all outpatient for new lines and g-tube changes. It's been awesome and the reason I'm now a fully employed woman!<br />
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2. Everyone is healthy! From a relative standpoint, this is HUGE! We have survived the past 2 years with minimal major illness or even lots of little stuff. A cold here and there, but that's about it. Tray did have an abscess that was easily and quickly treated with a round or oral antibiotics and there was a quick round of what we 'think' may have been a mild flu. All in all, cruising along well.<br />
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3. Schooling is over for both Peter and I and we are fully employed, contributing members of society again! Peter is working at Vera House, a not-for-profit that works with men, women, and children who are the victims of trauma, especially when it's a result of domestic or sexual abuse. I am working as a third grade special education teacher at an elementary school in Syracuse, New York. I love my job, but I work at an extended day school and don't get home until 5:00 each night. That's not my idea of a 'school day' but it could be worse, I could be unemployed with my 3 degrees. So I'm not complaining. . . well, maybe a little. <br />
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4. Joshua graduated from high school. Tray is a Jr. and graduates next year. Marriela is moving to the high school next year as well. Cody is going to be a middle schooler and Sergio. . . well, due to nursing complications, is no longer attending school. He's now on homebound and is doing wonderful! Annette has moved into her own apartment in a large development in the next town over and LOVES her independence. <br />
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Well,, there are new things that need to be updated, but for now, with little more than just the facts, I'm going to head to bed. It's Easter Eve and I'm sure the festivities tomorrow will give me much more incentive to write! <br />
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Love to all. </div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com2tag:blogger.com,1999:blog-8852998556650557066.post-69484093277031207192015-05-10T10:38:00.001-04:002015-05-10T10:38:40.522-04:00Messy Miracles in the Making. . .: Mother's Day<a href="http://messymiracles.blogspot.com/2015/05/mothers-day.html?spref=bl">Messy Miracles in the Making. . .: Mother's Day</a>: Though a bit outdated, it is one of my absolute favorites. This was an amazing day! Happy Mother's Day! This day has meaning to ...Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-2673332505096228662015-05-10T10:37:00.003-04:002015-05-10T10:37:30.554-04:00Mother's Day<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Though a bit outdated, it is one of my absolute favorites. This was an amazing day!</td></tr>
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Happy Mother's Day! This day has meaning to me that many don't and can't understand. But that's fine. I am mother to seven amazing children, six of whom are growing stronger and older by the day. I am forever grateful for my opportunity to be a mother. I owe that opportunity to five other mothers, as well as my own mother.<div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Yep, me as a wee one before my life<br />unfolded. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">My mother. My inspiration.</td></tr>
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Without my mom, well. . . I wouldn't be here!! She set the wheels in motion for my life to unfold, and though maybe not always in the way I think she wanted; it was in the way I wanted. However, because of my mom (and dad) I knew I would live a unique, wonderful, interesting and loving life. </div>
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<tr><td class="tr-caption" style="text-align: center;">Beautiful Ethel. </td></tr>
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Five of my children arrived in this world without me having any idea of their amazing grand entrances. For those not aware of some of the amazing starts to life my children have had, head back into the past posts. But over time, each was presented to me in a different way, in a different place and through different means, but each was meant from the day they were born, to be my child. I thank each and every one of those moms for having the honor of raising their children, regardless of the circumstances surrounding their lives. Even the mother who was ultimately responsible for my daughter's passing. . . I was blessed to have her as my daughter and I loved her like a mother and I knew it was time to let her go. .. like a mother. I had an incredibly short, albeit, intense, relationship with my daughter, Ethel. She was beautiful, chunky and loved. She had a father, brothers and sisters (one of whom talks of her to this day). I held her with all the love of a mother as I offered her over to the doctors to take away the seizures, knowing the treatment would take her away as well. I was her mom until the end. I am still her mom. </div>
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My other incredible children are here, happy, healthy (in a very relative term) and create my need to breath each and every day. Their mothers, some of whom I KNOW think of them and love their son's still, are human. I know they want to know they made the right choice and I only hope they know and feel in their hearts the peace that they did. The others, I don't know. I don't know if they remember their children through the haze of drugs and street life. One we are fairly confident has been deceased for a long time. But, I am still thankful for them. I am thankful for the wonderful creations bestowed upon them and ultimately me. I am a mom because they became moms. That's wonderfully cool, regardless of the narrative before our stories began. </div>
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<tr><td class="tr-caption" style="text-align: center;">Not one of our best, but got tired of looking when I should be<br />doing my final exam. LOL</td></tr>
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I was also incredibly blessed to have two homegrown children as well. Both, HUGE surprises (thus all the adoptions heehehe). Joshua's life was complicated by so many things. I am often asked "Did you know about so and so's medical issues before hand? I don't think I could do that if I knew." Well, biology does not protect you from malady. I was young, healthy, and did all the right things and my homegrown, fully biological son had a brain tumor that almost killed him. There are no guarantees in life we will get perfection. As far as I'm concerned both of my awesome homegrown children are perfect and all of my adopted children are perfect, just sit and talk with them for a few moments and you'll see just how deep their souls, their zest for life and their love for our family is. </div>
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<tr><td class="tr-caption" style="text-align: center;">We love our selfies!</td></tr>
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So, as I celebrate my 25 year as a mother, I am reminded of all those who are mothers in so many capacities. Grieving mothers, mothers who gave children up for adoption, mothers who adopted, step-mothers, mother-in-laws, and mothers of mothers. What a big wonderful world created and maintained by the love of mothers. Hugs to each and every mother far and wide. May you feel love and peace today. </div>
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HAPPY MOTHER'S DAY!!!</div>
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Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-49835684633390243212015-05-01T09:38:00.002-04:002015-05-01T09:40:09.173-04:00Put Your Right Pit In. . . . <div dir="ltr" style="text-align: left;" trbidi="on">
Just thought I'd share a few tid bits from this week. ..<br />
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As I was standing in the kitchen I heard Joshua in the bathroom singing "Put your right pit in, put your right pit out. . . . you know the song. . . . and shake it all about". I looked in to see what "pit" he was referring to and found him moving his hips back and forth (yes, while peeing. . . .ewww). I asked "Do you mean "HIPS" not "PITS"?? He was shocked it was the wrong word! I told him if he wore his hearing aids he'd hear the differences in the words! It was a great laugh for me though. <br />
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A couple of days later, Tray states, "These jeans are really tight." I explained that they had been dried on the clothes line so they need to be stretched out and suggested some squats to loosen them up. He proceeds to do several full length lunges up and down the hallway. Then he asks "Are you trying to tell me I'm getting to fat or something (he definitely isn't)?" Totally confused now, I get up to see what the issue is. He's standing there with what look like painted on jeans, unable to even bend his knees. I laughed so hard. . . he had my jeans on!! Ever see the <a href="https://www.youtube.com/watch?v=JoN60Is1jcA" target="_blank">Seinfeld episode</a> with Kramer and his tight jeans? Yep, it was that funny.<br />
<br />
Marriela has planned out her entire life thus far. The other night she reiterated that she is moving to North Carolina (because they have better hospitals according to one family vlog who lives in NC to have babies at). She reiterated her desire to "have shots to have sextuplets", I need to thank Kate Plus Eight for that lovely learning curve. She is NEVER going to go in a pond because she does not want a baby from the tadpoles, that little educative doozy goes out to the opening scene in Look Who's Talking Now. She then enlightened us on her occupational prospects she is considering to support these children. <br />
Here's some quotes:<br />
<br />
<ul style="text-align: left;">
<li>I'm going to college for something like swimming so I can get a gold medal. They do pay you for a gold medal right? (I proceeded to remind her that she has yet to successfully even float in a pool or let go of the edge and she's almost 13). She countered with, Then I'll dance for money. I just left that one alone. </li>
<li>If I don't make enough for diapers then I will marry a rich white husband from Match.com. (I am truly comforted by the fact that she has a back up plan for the dancing gig.)</li>
</ul>
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Well, that's all for now folks. Just thought a little glimpse into the world of the Curkendall's would make you all feel a tad saner. I am to help. </div>
<div>
<br /></div>
<div>
Have a fantastic day on this awesome first of May!!!</div>
<div>
Renee</div>
</div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-81941037559582654222015-04-25T15:56:00.001-04:002015-04-25T15:56:14.547-04:00Timeline of Septic Shock<div dir="ltr" style="text-align: left;" trbidi="on">
January 20th<br />
I receive a call, Sergio has a fever. Off to the school I go, get him, draw labs, cultures, start antibiotics. He gets hotter and hotter. I give a dose of toradol and Tylenol. He finally cools down. <br />
<br />
January 21st<br />
3:00 am, my phone rings. Sergio is 103 degrees. I come to his room and find him shaking violently as he spikes one of his very high temps. His nurse and I prepare for him to go to the ER immediately. I give another dose of Toradol and push a bolus of IV fluids. His heart rate is in the 190's. I know he has a severe line infection (thanks to his usless gut). <br />
<br />
4:00 am, arrive at the ER with Sergio, no longer shaking and a temp of 105. I've already started everything needed for the sepsis protocol the ER uses. So we sit and wait for a room, while he cooks and I watch the monitor. <br />
<br />
6:00 am I can no longer look at the Blood Pressure numbers and find a doctor and insist they do something. She orders a bolus of fluid. We are transferred as a floor patient to the ICU because it's the only room left in the entire children's hospital. <br />
<br />
7:00 am the PICU doctor is consulted, Sergio is looking septic. Orders more antibiotics. <br />
<br />
3:00 pm, Sergio is sitting in his bed playing with water, he looks much better, but clearly not well. Cultures are positive for a gram negative bacteria called Klebsiella. It is his arch nemesis. It's the same bug that put him in the PICU on a ventilator for 5 days in 2013. <br />
<br />
January 23rd. Sergio looks wonderful. He's running the halls, kicking his potato head, rocking his chair and climbing out of his bed. We go home at 3:00 pm on two antibiotics.<br />
<br />
3:30 pm I arrive home, he is shivering. I quickly find ways to justify the shivering and try to reassure myself that he is ok. <br />
<br />
5:00 pm Sergio has a temp of 101.5. Take a deep breath, cry that it's all starting again just 2 hours after discharge. Offered the option of trying one dose of Tylenol as the only intervention and seeing "what happens". <br />
<br />
January 24th<br />
12:05 am Phone rings. Sergio is spiking quickly and he is shaking violently again. Throw him him in the car, shaking and all (which you should understand is profoundly painful!) and race to the ER again. <br />
<br />
12:30 am Sepsis protocol restated. The antibiotic stopped prior to discharge, restarted. Cultures drawn just 4 hours earlier, are already positive for the same gram negative bug plus a new one. <br />
<br />
3:00 am Moved to the PICU as a "step down" patient and managed by the PICU docs. He is doing well and seems to be responding.<br />
<br />
January 25th<br />
7:00 pm After getting a blood transfusion due to anemia caused by the sepsis infection, Sergio develops some very strange reactions. The attending physicians are convinced he has a clot. We head to CT scan to look. He looks off but nothing specific. CT all clear, just Sergio's body doing strange stuff without explanation as usual.<br />
<br />
January 26th<br />
9:00 am Sergio is not himself but he is no longer "sick". Very sleepy, but once up, plays hard and walks the halls. Has some respiratory stuff going on. <br />
<br />
3:00 pm - Looks much better. Causing trouble, playing in the sink. Going home on two antibiotics again. <br />
<br />
January 27th - Had a good night. Doesn't look like he feels well in the AM though. Run some errands, to return to Sergio running a fever.<br />
<br />
11:00 am - Back in the ER for the third time in five days. This time, he isn't bouncing back. Several boluses giving. Spikes to 105.4. Given Tylenol. Cools down, looks a bit better. No room in the PICU so sent to regular floor.<br />
<br />
3:00 pm - Another fever spike, this time his profusion is severely compromised, his blood pressure is way too high, a sign it will go the other way in the near future. He is moved to the PICU as a full PICU patient. <br />
<br />
6:00 am - Sergio is now on maximum dopamine support to keep his pressures up. Waiting on emergency surgery to remove his infected line and place a PICC line in his arm in the interm. Blood transfusion, platelet transfusion, antibiotics, antifungals, fluids, dopamine all keeping him afloat for a while. The fluid is catching up though and his lungs get "wet' and he struggles to breath. <br />
<br />
3:00 pm - Finally go to surgery. Line removed. Return to room on high flow oxygen and real struggles to breath. Chest x-ray looks worse. <br />
<br />
January 28th - Struggles to breath continue. Blood pressures are very, very high (170/110) due to fluid overload. Wean off of Dopamine to help bring B/P down. Give lasix to help pull some off. Needs several potassium infusions to keep it up. Give does of IVIG to help boost his immune system as it has crashed in response to this infection.<br />
<br />
January 29th - Sergio drops six pounds of fluid in less than 18 hours, he had gained 13 pounds in just three days. Breathing is better, but still needing O2. Develops awful cough. Due to ongoing headaches and needing strong pain meds, CT scan of head ordered. <br />
<br />
January 30th - Feeling better. Cough continues. Cultures are negative so we stop all antibiotics. Getting more potassium.<br />
<br />
January 31st - Fever returns to 103.4. All antibiotics and steroids are restarted. More potassium.<br />
<br />
February 1st - Flu A positive. Someone in the hospital gave him the flu. More potassium.<br />
<br />
February 2nd - Cultures are neg. so we stop all antibiotics and steroids again. On Tamiflu for the flu. No longer needing any O2. Still getting potassium infusions daily.<br />
<br />
February 3rd - Fever returns to 103.7. All antibiotics and steroids are restarted. Frustration abound for everyone. White count plummets. More potassium.<br />
<br />
February 4th - Sergio is looking good. Playing, happy, more energy. Decision is to wait one more day and discharge on all antibiotics if still good. Increased Sergio's potassium in his hydration and TPN to maximum amounts. One more infusion. <br />
<br />
February 5th. - Sergio GO'S HOME!!! <br />
<br />
We are now over 5 days out from the completion of his antibiotics and thus far doing great. Praying all this is behind us. <br />
<br />
This is a boring recount of what it's like for my sweet baby. He goes through so much just to live, be happy and play. He doesn't care how sick he "was" as long as he feels good again, he moves on. That's the reason I fight so hard for all of my kids. They WANT to live. So, I will give them every single chance in life to do so, regardless of the obstacles stacked in front of them. <br />
<br />
More interesting posts to come soon. <br />
<br />
Love,<br />
Renee</div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-86073815253438852142015-04-25T11:58:00.002-04:002015-04-25T11:58:57.651-04:00Long lost update. . . .<div dir="ltr" style="text-align: left;" trbidi="on">
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WOW!! It’s been a
long time since I’ve updated my blog. I’ve
been remiss in my duties keeping you up to date on the latest and greatest from
the Curkgang. I’m sure you’ve all be
waiting on baited breath for the daily going ons in our home and life (insert
eye roll). Actually, I’m pretty sure you could live the rest of
your lives having never seen another update from me, but heck, I’m going for it
anyway JUST in case someone out there can’t survive. I’d hate to be responsible for the early
demise of one of my faithful reader s (all 13 of you I think) <span style="font-family: Wingdings; mso-ascii-font-family: Calibri; mso-ascii-theme-font: minor-latin; mso-char-type: symbol; mso-hansi-font-family: Calibri; mso-hansi-theme-font: minor-latin; mso-symbol-font-family: Wingdings;">J</span> . <o:p></o:p></div>
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So what’s going on. . . . a lot and not much. I’ll start with our littlest one (in size
only, as his attitude MORE than makes up for that). He had a rough patch back in January with a
nasty three week admission, several trips to the PICU and eventually the loss
of another central line. That line was
replaced with a PICC (peripherally inserted central catheter) in his upper
bicep. Since that time, he’s had an amazing
run. There have been two fevers episodes
(scares) but both were successfully treated at home with our wonderful protocol
that allows me to do it all without going to the ER. <o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSEpjNM8WsOaKvoZrrYySFPEgbfwcSsm_2UjGXf-_iq-v89IWCoWXscPZXBECdPoYlLc_OHRuV_5L04FyGEcr2QyMFGUNE_Re1AmW-YvkjaP2pKB_uGvuDeJoIa3wo0DRjVCotGfxdhJY/s1600/bedtopper.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSEpjNM8WsOaKvoZrrYySFPEgbfwcSsm_2UjGXf-_iq-v89IWCoWXscPZXBECdPoYlLc_OHRuV_5L04FyGEcr2QyMFGUNE_Re1AmW-YvkjaP2pKB_uGvuDeJoIa3wo0DRjVCotGfxdhJY/s1600/bedtopper.jpg" height="240" width="320" /></a>With this run of health, Sergio has successfully toilet
trained during the day!!! Not without
some interesting twists because that’s just Sergio. First, he’s discovered he’s now his own
producer of liquid (water) to play in!!
Wah Hoo!! Yesterday he was
playing in his bucket of water and it wasn’t quite as full as he wanted, soooo
he filled it up more, by letting loose a bladder full of highly dilute
urine. He had a devilish smile on his
face as he proudly looked at me solving his own problem. Needless to say, he’s not left unsupervised
for any length of time now. <o:p></o:p></div>
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On another Sergio front, he received the topper to his bed!!
Now he is safe and secure in his bed. He
had learned how to stack pillows and blankets to pull himself over the top of
his bed (which is level with my chin, thus high off the ground) and we were
terrified he was going to topple head first out of the bed. With some searching, I was able to secure a
couple of grants to cover the $2,000 enclosure.
These special needs companies make a killing on these much needed
products. So frustrating! But, he’s now
safe and sound. <o:p></o:p></div>
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Ok, onto Nettie who has big news to share too!! After her knee infection, 5 week hospital
stay and a major decrease in mobility due to the now scarred knee, Nettie’s
physical health has taken a hit. While
in high school, we choose a power chair for her. This was to help her stay in pace with her
peers, to be higher, thus more approachable, and to decrease the fatigue of
moving all over the large building using a manual chair. She had access to a school bus and ambulette
service to transport her in the power chair.
However, once she graduated, moving the chair from the house was impossible
(we do not have a van with a lift). The
new funding from Albany does not allow her to access the ambulette service
(wheelchair van taxi’s) if she has staff that can transport her. Obviously you’re never going to find staff
who own their own wheelchair adapted vehicle!
So, we requested a manual wheelchair.
It was flat out denied from the insurance. The one she has now (the one in many of her
pics) is a typical hospital wheelchair and it is causing severe back and neck
pain. She is now requiring bracing of
her neck and back to prevent further damage.
So, rather than take up a fight I was going to lose, we opted to take a
different approach. Annette’s card
business has allowed her to purchase several items to help her remain independent. She has purchased new braces for her ankles
(the ins. Only covers one pair every 2 years and she needed new ones at 18
months), shoes to go over the braces and has almost enough for a three wheeled
adaptive trike. We decided to start a
<a href="https://www.kickstarter.com/projects/1916403429/for-the-love-of-peace" target="_blank">KickStarter </a>campaign to try and promote her card business and raise the funds
she needed for her wheelchair! It was SUCCESSFUL!!!! She raised enough to purchase the wheelchair,
card making supplies and maybe a new computer to help her produce her labels
faster. She received a small Cricut
(scrapbooking machine) for Christmas two years ago, but has never had a
computer to use it with. She’s so
excited about the new things she can do with her cards with this machine and
computer!! We were blown away by the
support, but honestly, this child deserved it and I’m so happy she was
successful. <o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvI4UTACI3gKhJLyFyZK_V5eiyXH-4q-ZhPRWbS6d-QAHGNpRWfFDn9UkWtWl_y70_97vG8TNUCLp1LbhR3aI8TkiL-auA76hA2Il2gf7dfaPowkUvIMsqyvhhKIM925QBZ84vQJkwFzU/s1600/joshualacrosse.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvI4UTACI3gKhJLyFyZK_V5eiyXH-4q-ZhPRWbS6d-QAHGNpRWfFDn9UkWtWl_y70_97vG8TNUCLp1LbhR3aI8TkiL-auA76hA2Il2gf7dfaPowkUvIMsqyvhhKIM925QBZ84vQJkwFzU/s1600/joshualacrosse.jpg" height="180" width="320" /></a></div>
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Joshua and many other Special Olympians were honored by the
Liverpool Lacrosse team. He wore one of
the players jerseys and were presented on the field! What an honor! Joshua is also going to the PROM!! I’m not sure with who yet, he doesn’t have a
date secured, but we’re working on that.
He’s very excited to go. This
mama’s heart is breaking and bursting at the same time. Such a passage of rite but, it signals a finite
time remaining for school before we must face the reality of adulthood. Joshua’s unique combination of needs will
preclude him from working independently. . . ever. He is not a highly motivated individual
(unlike Annette who, once she gets an idea in her head is unrelenting until she
achieves it). The future is just around
the corner now, but we’ll take it one milestone at a time. </div>
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<o:p></o:p></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5W5zJvSLciYKjRNroHZSBWsIE6HH1KXr61MMyqwySitr1jKRnSi0Oyr7-1Aedbei0et6tcdGLCS9fyT1FTxsbYudOgx6FJpksWufU1AOjNNZNSjc2jCFYOk8T5UF83DLS1YeOAKp7V7I/s1600/traydisus2.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5W5zJvSLciYKjRNroHZSBWsIE6HH1KXr61MMyqwySitr1jKRnSi0Oyr7-1Aedbei0et6tcdGLCS9fyT1FTxsbYudOgx6FJpksWufU1AOjNNZNSjc2jCFYOk8T5UF83DLS1YeOAKp7V7I/s1600/traydisus2.jpg" height="320" width="180" /></a>Tray is doing phenomenal in school and in health. He has joined the track team and is doing
shotput and discus. He is enjoying it
tremendously. This summer we are looking for activities to keep him busy and
not glued to the computer games. He’s
not really ready to work yet (developmentally or maturity) but he’s close. I’m going to find some volunteer opportunities
to work on those skills needed for employment.
He’s also going to his heart camp this summer, though he ages out next
year! So hard to see my “babies” growing
up!! <o:p></o:p></div>
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Marriela is thrilled she is not attending summer school this
year. Though she qualifies, she made the
announcement that she will NOT be going because she is in middle school and no
longer needs to do baby things. Her
newest obsession is sextuplets. S<o:p></o:p><br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlO6YSiWOEcYZjN6KJd0w6r3EqAC8M4q4BGwBb3yY7fF3g6KBatzxZFu4I6OGE4HIbk5wkP7wgRYEYyxg0_5tjfVI2JY6hbNk5Aqx8vsrDQbFUENVVGIi_9tTHtEwLfoJufi1KfL_blBM/s1600/get-attachment+(2).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlO6YSiWOEcYZjN6KJd0w6r3EqAC8M4q4BGwBb3yY7fF3g6KBatzxZFu4I6OGE4HIbk5wkP7wgRYEYyxg0_5tjfVI2JY6hbNk5Aqx8vsrDQbFUENVVGIi_9tTHtEwLfoJufi1KfL_blBM/s1600/get-attachment+(2).jpg" height="200" width="150" /></a>he is
determined that she is going to have said sextuplets (“either she will have
them by pushing them out or she will adopt sextuplets” – at least she’s
flexible in the methodology of obtaining this brood of children). With the concept of sextuplets comes the need
to locate and write down EVERYTHING that she may need for six babies at one
time. 6 seated strollers, Chevy Suburban
that can fight six children, six car seats, six sippy cups, six swings, six
white cribs, etc. etc. Ohhh, and she’s
moving to North Carolina. She’s going to
live in a house like Matty B has (a freaking giant mansion!) an indoor pool, a
hot tub and she will be contacting Mr. Congel to close Destiny Mall here in
Syracuse to open one instead in North Carolina.
Good luck with that my sweet girl. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuPc3uHKK9euGcwVktHig3E4DnjF3fDSpygrn-y3wd0Osu0ctCEtSHfsBOuD7iQnwTghjwWGmqD7u7MLDGua1oxRhieIoJE_MWZoI9_dRBFhA0B6tjpQRP5x6RdxfZyFfrPJ07JWln9ZA/s1600/codyjuijitsu.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuPc3uHKK9euGcwVktHig3E4DnjF3fDSpygrn-y3wd0Osu0ctCEtSHfsBOuD7iQnwTghjwWGmqD7u7MLDGua1oxRhieIoJE_MWZoI9_dRBFhA0B6tjpQRP5x6RdxfZyFfrPJ07JWln9ZA/s1600/codyjuijitsu.jpg" height="179" width="320" /></a>Cody is getting ready for another Jui Jitsu tournament right
here in Syracuse. He’s ready, just needs
to work on those double leg take downs and controlling the clock. He’s advanced so fast in this sport. He’s also doing intramural basketball in
school. Last night I took him to his
Spring Fling dance were I saw him dancing unabashed and in no less than TRIPLE
time of the song playing. He does everything
fast – including dancing apparently. I
even witnessed the only “worm” in the room, yes, it was my son in his white
shirt belly down on the cafeteria floor.
Ewwww. A mean round of Pokemon
card trading and the dance was over. It
is so wonderfully odd to have a “typically” developing child!<o:p></o:p></div>
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Peter is done with his courses and only has his internship
remaining. However, there is an issue
between his university and the State of New York and all students in NY must
delay their internships yet again (already delayed it one semester, now it will
be two). That leaves a quandary. To remain active in the program, he needs to
continue taking courses; however, he has completed all of the necessary courses
AND 12 extra credits. We are working
with the university now to see what compensation and alternative plans they
have to accommodate these students.
Peter has also successfully passed his hypnotherapy course and is now a licensed
hypnotherapist!! He is busy setting up his business model and securing an
office to begin servicing clients. So
proud of him!!!<o:p></o:p></div>
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Finally, the one and only, myself. I am finishing up two courses right now that
will finish next week. Then I start the
last of my two remaining courses. I’ll
be done at the end of August and will be conferred my Ed. S. degree in
Education. I too have started my own
business. As an ardent opponent of the
testing madness occurring in education today, and a local advocate for the
refusal movement (which, many of you may have seen, was highly successful in
NY) I have decided to open my own Education Advocacy practice. Education Advocacy of CNY will be up and
running by the end of May. I have
several families I’ve already been working with and know that this is a huge
area that needs to be addressed. I am so
excited to be done with school and putting my skills to work finally!! This will allow me to customize my schedule,
work from home or the office Peter uses and allows flexibility in my time to
meet all of the kids needs while still making an income. The best of all worlds!! <o:p></o:p></div>
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So, that’s where we are.
Could have totally lived without these 1700 words in your day I
suspect. Rest assured, it’ll be another
gap of time before my next update so you’ll have lots of time to recover. <o:p></o:p></div>
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Take Care and God Bless,<o:p></o:p></div>
<br />
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Renee <o:p></o:p></div>
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Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com1tag:blogger.com,1999:blog-8852998556650557066.post-7370369880558100092014-12-05T12:46:00.001-05:002014-12-05T12:46:01.257-05:00Messy Miracles in the Making. . .: Quality versus Quantity<a href="http://messymiracles.blogspot.com/2014/12/quality-versus-quantity.html?spref=bl">Messy Miracles in the Making. . .: Quality versus Quantity</a>: Quality versus quantity. . . what a complex and sticky little concept. It’s so different from case to case. We’re currently faced with ...Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-49340645949398877832014-12-03T20:39:00.001-05:002014-12-03T20:39:26.422-05:00Quality versus Quantity<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: 'Times New Roman', serif; line-height: 200%;"><span style="font-size: large;"><b><i>Quality versus quantity.</i></b></span></span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;">
. . what a complex and sticky little concept.
It’s so different from case to case.
We’re currently faced with this issue for two of our children. It’s not the first time we’ve faced it, nor
the last, but is never easy. Sergio has many things going on that
constantly cause us to stop, rethink, and determine if what needs to be done is
worth the degradation of his quality of life.
Most times it is, sometimes, it’s not.
As such, the hospital has been wonderful in coming up with new protocols
never tried before just to save us from so many hospitalizations. From drawing cultures and labs at home, to
starting emergency interventions and key antibiotic therapy without the need
for a trip to the ER and admission to the hospital (provided he is stable and “ok”). We are also looking at Quality v. Quantity
issues for Joshua as well. His port has
stopped working, he needs a new one. He
is developmentally not able to do it while awake. We were incredibly blessed to have our
wonderful oncologist go down to interventional radiology and “make a case” for
him to get his port in IR under general anesthesia. We’re just awaiting a date. With the new port, we have decided to move
his IVIG infusions back home. He wants
to try it. This results in some
significant changes in who and how he has his port accessed. It also opens the door to trying new
interventions for his neurological issues that affect his bladder. This may allow us to circumvent the need for
more traditional approaches but will significantly impact quality versus
quantity. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: 'Times New Roman', serif; line-height: 200%;"><b><u><span style="color: red; font-size: large;">Sergio</span></u></b><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;">Well, we made it through
the holiday without an admission. That’s
not to say we made it without an infection, just that our new protocol that
allows me to begin the same treatment and lab work the ER and hospital do; at
home, worked. This prevented another 4
day admission when he began running a fever the day after Thanksgiving. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;">Sadly we’ve made several
more changes to accommodate our young son’s ever changing, and failing
organs. Lately it’s his kidneys. I’ve been watching his kidney numbers go up
more and more. His BP likewise has begun
a steady upward climb. The little boy
who had low blood pressure his whole life, now has high blood pressure. We know his kidneys are at fault, but don’t know
how or why. . . just like every other thing that goes wrong with him. There are no books that you can read, no websites
that condenses his particular constellation of issues into a nice neat article and
then delves into the treatment for those issues. Nope, not Sergio. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;">He is now tethered full
time to both hydration and TPN, this means he’s lugging around 6 pounds of
pumps, tubing and bags of life sustaining medications. We had to move him from a backpack to a
rolling bag (and if you know Sergio, this is not an easy feat!). Last night he had to have repeat doses of
morphine because his bottom was so sorry he wouldn’t sit down. It is a side effect of the severe diarrhea that
comes with the antibiotic he has to have.
So we augment his treatment with pain meds, acid reducing pastes on his
poor bottom and we blow dry the skin with a blow dryer. It’s a sight to behold. It’s sad, it’s frustrating and it’s
reality. Yet, my baby has NO IDEA that
this is bad. He has never known anything
else and when It’s over, it’s over. He
returns to his potato head stealing, microwave waving, water drenching
activities as if he hasn’t a care in the world.
He is in the terrible “twos” or “threes” phase right now. Complete with foot stomping, evil eyes,
yelling at and door slamming. It’s such
a spectacle you can’t help but laugh, which makes him madder if it results in
me quarantining him to his bedroom (mind you, this is the worst place in the
world for him, as it’s off of the kitchen and bathrrom . . . aka, microwave,
tub, sink, dog bowl heaven. And no,
morphine does NOT make him sleepy and all dopey, it just makes him feel well
enough to act just like himself. </span><span style="font-family: Wingdings; font-size: 12.0pt; line-height: 200%; mso-ascii-font-family: "Times New Roman"; mso-bidi-font-family: "Times New Roman"; mso-char-type: symbol; mso-hansi-font-family: "Times New Roman"; mso-symbol-font-family: Wingdings;">J</span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;"> <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: 'Times New Roman', serif; line-height: 200%;"><b><u><span style="color: blue; font-size: large;">Joshua</span></u></b><span style="font-size: 12pt;"><o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;">Joshua has a neurogenic
bladder and bowel. This is a result of
the first surgery to remove his brain tumor.
It was significantly worsened by the epilepsy surgery that further
disturbed the areas that have the nerves that control the neurological aspects
of bladder and bowel control. As such,
he feels like he HAS to go all the time.
I mean 20+ times a day.
Sometimes, he actually goes. Most
times, he can’t. I get frustrated. He gets frustrated with me and doesn’t
understand why I get upset. You see, he
seizes the most in the bathroom. It’s
the least safest place in the house for him, yet it’s where he has to stand the
most. I has broken doors, showers, and
even a faucet. He has had the shower bar
fall on his head causing more issues and he has torn up his side and back up
falling against the door jamb and shower door latches. There are treatments but it necessitates
having to undergo invasive and very uncomfortable testing which he does not
want to go through again. It hurts and it’s always very abnormal. The permanent solution is a stoma in his
abdomen that he can use to catheterize himself so he empties his bladder
completely, thus eliminating the never ending sense of needing to go. This is where the quality versus quantity
comes in. We have opted instead to
pursue adding hydration via his port each week to improve actual bladder
function. Joshua is not happy about
having to have his port accessed for days at a time, but he also agreed it’s
better than the testing and if it works, then great. If it doesn’t, then we’ll revisit our
options. His original diagnosis of brain
tumor and subsequent treatments have taken a terrible toll on his body. He has unrelenting seizures, neurogenic
bladder and bowel, cataracts, severe developmental delays, severe hearing loss,
osteoporosis, and ADHD. Yet, he happily
sits by the fire every night and watches the same re-runs of Disney shows over
and over. He is Peter’s shadow and never
far from daddy when he’s home. Loves
having his finger and toe nails cut.
Manages to make it so his hearing aids “don’t work” an awful low despite
reassurances from the hearing aid store that they do, in fact, work well. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;"> The rest are doing
well. </span><span style="font-family: 'Times New Roman', serif; line-height: 200%;"><span style="font-size: large;"> <span style="color: #274e13;"><b><u>Tray</u></b></span></span><span style="font-size: 12pt;"> blew away his transplant team
when they saw how tall he had gotten. He
is now 5’10”. He’s officially taller
than me. He is still growing and will be
in a size 13 sneaker by winters end. He
has been having high blood pressure for a while now and finally the agreed It
was time to address it. So he’s started
a blood pressure med, though it doesn’t seem to really be a high enough dose,
as his pressures are still too high.
Will tweak the dose this week.
Overall, he looks amazing and feels even better. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: 'Times New Roman', serif; line-height: 200%;"><span style="font-size: 12pt;"> </span><b><u><span style="color: purple; font-size: large;"> Nettie</span></u></b><span style="font-size: 12pt;"> has many aches and
pains. Her severe knee infection 2 years
ago, set her back almost 10 years in terms of physical abilities. In an effort to lose weight and get back some
of the function she has lost, she injured her elbow, causing severe tennis elbow. It’s very painful and though she had instant
relief from a cortisone shot, she did not follow instructions to rest the elbow
for at least 2 weeks. Instead, because
it felt good, she jumped into more exercise than ever. Now she’s hurting badly again. Not sure what else there is to do to help
her. </span></span><span style="font-family: Wingdings; font-size: 12.0pt; line-height: 200%; mso-ascii-font-family: "Times New Roman"; mso-bidi-font-family: "Times New Roman"; mso-char-type: symbol; mso-hansi-font-family: "Times New Roman"; mso-symbol-font-family: Wingdings;">L</span><span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;"><o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: 'Times New Roman', serif; line-height: 200%;"><span style="font-size: 12pt;"> </span><b><u><span style="color: lime; font-size: large;">Cody</span></u></b><span style="font-size: 12pt;"> is doing great,
other than taking a very hard fall down our hard wood stairs today. Pretty bad back contusions and elbow bruise,
but he’s running around with my rain coat on and my hair dryer (a new and
better zombie killing gun says he). He’ll
live. <o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;"> </span><span style="font-family: 'Times New Roman', serif; line-height: 200%;"><span style="font-size: large;"> <b><u><span style="color: magenta;">Marriela</span></u></b></span><span style="font-size: 12pt;"> is in heaven as
her Elf on the Shelf, Dennis has returned.
For me, that means leaning heavily upon my night nurse to remember to
move that dang little guy around. Today I
was truly impressed, Dennis was in a hammock, hanging from my dining room
light. . . such ingenuity! <o:p></o:p></span></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;"> Peter and I are tying up
this semester of school. I am only 18
credits from my advance certificate of Ed.S (Education Specialist). Sergio is making it very hard for me to contemplate
what to do with my new found skills and education, but we’ll work something
out. Peter will be starting his
internship with Vera House, an organization that works with abused women and
children. He will be full time in the
spring and upon completion will be ready to work as a Mental Health
Counselor. So exciting!!<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;"> On December 16<sup>th</sup>,
I will be having surgery on my rotator cuff.
I have done the cortisone shots, PT, ice, and heat to no avail. I’m in pain all the time and MY quality of
life is severely impacted which then impacts my children and that is not
ok. As such, I will have an impingement
release, tendon repair and a bone spur removal.
I can’t wait!! How said is
that!! So Christmas should be fun. Working hard to have the buying and wrapping
well underway by that point!<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;">Well, that’s it for
now. Merry Christmas to all and a
Blessed New Year. <o:p></o:p></span></div>
<br />
<div class="MsoNormal" style="line-height: 200%;">
<span style="font-family: "Times New Roman",serif; font-size: 12.0pt; line-height: 200%;">Renee<o:p></o:p></span></div>
</div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com1tag:blogger.com,1999:blog-8852998556650557066.post-68481868342762448492014-09-24T13:40:00.003-04:002014-09-24T18:00:22.206-04:00And summer is gone. . .<div dir="ltr" style="text-align: left;" trbidi="on">
Time just keeps on moving along. So much to say, literally. Yet trying to identify those aspects of summer that really need to be shared (well, I find it necessary to share; I suspect most could care less. . . that's ok. hehehe) is hard. <br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiJBFMq7gEwAqJEmRruG0MnZ1eayDRZotIAS5pJj9djnxY0-caz_eT3eau-ZMs6DOc8lGgOvvDGV71ntZT_4oT6-8bqm9-g2BV-talxC_8KDjpQFao5C4iX5NAiqUZ6GqQz3fwrTIb2XE/s1600/get-attachment+(4).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiJBFMq7gEwAqJEmRruG0MnZ1eayDRZotIAS5pJj9djnxY0-caz_eT3eau-ZMs6DOc8lGgOvvDGV71ntZT_4oT6-8bqm9-g2BV-talxC_8KDjpQFao5C4iX5NAiqUZ6GqQz3fwrTIb2XE/s1600/get-attachment+(4).jpg" height="150" width="200" /></a>The kids are back in school. Joshua is "back" in 11th grade, eventually he'll catch on that he should be out of school at some point,thus far, he's content to just keep on keeping on. Tray is sort of "back" in 9th grade. He is in 10th grade BOCES but, because he goes for a half day, he could only fit in one 9th grade regents course, necessitating him to stay at the 9th grade building for his Global History and English courses. So he is, on paper, a 9th grader but don't let him know that!! LOL Marriela is now in 7th grade and thus in the middle school. She is doing superbly thus far! I'm incredibly grateful that the transition has been smooth thus far. Home, that's another whole story. Cody is in 4th grade and just started an instrument. He wanted the tuba, but he wasn't granted the genetics for large lips and thus couldn't use the mouth piece, therefore, he was moved to the baritone (a smaller version of a tuba). He loves it and is very good if I say so myself. Although the only notes I can discern are all made using a variety of key combinations that aren't on his actual practice sheet, but hey, sounds good to me! He also went out for Student Council. Really?? Where did this overachiever nonsense come from? When asked what he would do to promote school spirit, character education and community service; he offered that every class that raises $20 towards a charity of their choice can have a pajama day. Now, for me, wearing my pj's to school was nightmare level stuff, but today kids think its awesome! He then went on to say, if they raise $40 they can also have a Pokemon Day. I'm pretty sure we departed from school spirit there to Cody spirit, but he was thrilled with his suggestions and wrote them down with pride. Sergio is "back" in 1st grade. By time he leaves elementary school he'll have mouton chops and a mustache and maybe 4 feet tall. He'll be a bad ass "little person" who eventually will use some sort of device to swear at me. I'm confident of that. And Nettie, well, she called to say "HaHa" to them all on the first day of school like any respectable big sister would.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvm3b1RVivNhu0Fv1H2moi83vLAI60zMgJwXWVA11D9uhgYpYO2ztpAwHn9jXYdItWDwh1k90lC2lnL5VJCjWjU5scQpioxKxpVhStuO8BoyMigV3jU8-mVIOnfTDl6FL9diQxdrVAoKc/s1600/IMG_3430.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvm3b1RVivNhu0Fv1H2moi83vLAI60zMgJwXWVA11D9uhgYpYO2ztpAwHn9jXYdItWDwh1k90lC2lnL5VJCjWjU5scQpioxKxpVhStuO8BoyMigV3jU8-mVIOnfTDl6FL9diQxdrVAoKc/s1600/IMG_3430.JPG" height="200" width="150" /></a>Thus summer was also the tale of several not-so-fun hospital stays followed by an incredible Make A Wish trip. I'm going to do a whole update on the trip someday, it really deserves it's own dedicated posting. But suffice to say, it was AWESOME!! <br />
<br />
I graduated from St. John's University with my M.Ed. in Education Administration. I was also successful in completing the bazillion requirements to be re-instated as a certified teacher of students with speech and language disabilities. I have since enrolled back in school at Liberty University in their doctoral program. I am looking forward to a day when I'm no longer in school, but also realize that I may as well use this time, when Sergio is not stable, to achieve things that will lead to bigger and better things in the future once he is stable. Peter will be finishing his MS in Mental Health Counseling this spring! What an accomplishment for him and he will pursue work immediately. <br />
<br />
Yeah, there is so much more. I just can't think of it all now. . . really, the couch about 3 feet from me is literally calling my name, I swear I can hear it whispering "come lay down and take a nice nap before you finish reading Socrates. . .shhhhhhhh." That dang couch it's a terrible distraction. Sigh, I am going to resign to its calling.<br />
<br />
Till next time!<br />
Take Care and God Bless,<br />
Renee<br />
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Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com1tag:blogger.com,1999:blog-8852998556650557066.post-9035772769230506272014-08-12T22:01:00.000-04:002014-08-12T22:19:28.343-04:00The Hail Mary's. . .<div dir="ltr" style="text-align: left;" trbidi="on">
We've all seen them. The dramatic end of the game play that makes it or breaks it for the team. A desperate attempt to make the impossible possible and pull away a winner rather than a loser. <br />
<br />
Well, we've been doing that for 20 years now with our kids. Throwing up those Hail Mary's and then praying. Praying we land the basket, hit the infield or make the net. Tomorrow is another Hail Mary.<br />
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<br />
Truth be told, I'm positive there is a God. You know why, because the majority of our Hail Mary's have worked! We've been faced with two impossible choices and after making one, praying it was the right one. Whether it was leaving a DNR in place for Nettie or choosing to revoke it and push her through another life crushing infection. Or choosing between a life taking cancer or a life taking treatment for Joshua. Or putting our newly adopted son, Trayvon through another open heart surgery only to know transplant was not possible if it failed at that time. And even the impossible decisions of quality now v. quality later in life. We've had to decide whether or not to use medications in our daughter that cause neurological issues in people the longer they are on them. Doing so would give her the chance to see life in a more stable and rage free manner but may result in life changing complications in her future. Not doing so meant holding my daughter daily as she raged for two or more hours. What kind of life is that. What kind of choices are these?? Shitty vs. shittier. That's what they are, plan and simple. But you must make a choice and so chose we did.<br />
<br />
Today we had to chose again. We chose to wait for a single blood culture tomorrow morning. The result, positive or negative, comes with risks and concerns for either outcome. We, as a team, decided a positive means Sergio will need a new line. That means removing this one and leaving him without one for 3 days and then praying hard we can put a new one in. A negative means we get to go home. But, knowing that when we turn off the antibiotics, we may be facing another life threatening infection like the one we just went through. Both choices are crappy choices. <br />
<br />
I know there's a God, because he's held me up as I've stood an listened to the doom and gloom of doctors for one child after another. I know my sweet daughter that was to be is smiling down from Heaven, happy and whole. I know God has my back and though bad things happen, I also know he's not making them happen. He's pulling us through the shortcomings of this life. He loves Sergio and doesn't want him to suffer but that's the world we live in, the answers just aren't here yet. So he'll hold me up as we make choices to give my precious boy both quality and quantity and wait for the "answers" to come. <br />
<br />
Nettie has proven that we've made some good choices. I signed two DNR's (Do Not Resuscitate) orders for my baby girl. Each time they were to be activated, I look at her and just knew it wasn't the right time. She'd give us the signal she's ready to go, it wasn't my call to make. The same for Joshua. Despite the grim statistics and the side effects of the meds, and the life long disabilities that may occur or the chance he may need to battle another cancer caused by the treatment of the first. . . once the info was shared, we told the Dr. we'd only accept positive reports from that day forward. We were going to live like it was all going to work and he was going to survive. If we had to face another potential outcome, we'd cross that bridge when it appeared. And Trayvon, we decided it was the wrong time to move to transplant, despite the misgivings of the transplant team. We had hard decisions to make, and harder ones to live with if we were wrong. In all of these cases we were right. <br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU8du8qlQpTHm55bj5FBYg6JZut_4WClvN17u9Be0V9pgAGJP7KVgw8ECKFoMAj-PiQxukMb2J9FhVGs1P36fzNxfIqfaFh6xkw9PXE3ItSNXKJRRUf9bpofQb7bE_sOBhyphenhyphenhud1c9ivuY/s1600/oldman.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhU8du8qlQpTHm55bj5FBYg6JZut_4WClvN17u9Be0V9pgAGJP7KVgw8ECKFoMAj-PiQxukMb2J9FhVGs1P36fzNxfIqfaFh6xkw9PXE3ItSNXKJRRUf9bpofQb7bE_sOBhyphenhyphenhud1c9ivuY/s1600/oldman.jpg" /></a></div>
<br />
Our luck, time, whatever will run out one day. We'll be faced with such an impossible Hail Mary it won't be realistic to hope for success. Until then though, I think we'll just keep throwing them up and praying they're going where they need to be to make us a winner and not a loser. I just hope God isn't keeping score. :-)<br />
<br />
With love,<br />
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
Renee </div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-5308004058762302272014-08-11T21:44:00.000-04:002014-08-11T21:44:09.600-04:00How Hot Can You Get???<div dir="ltr" style="text-align: left;" trbidi="on">
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLovf6ZdI0N2fP86Bx975UId5DhHtEqTlB1mgogebpHr96cdmJNpmTXpOYv3f3CHu25EWawfobvpAP35aJdQ0l2ldTRLnBt0Frc7ewFSnZIiArgzrm8ZYUn5J-3qoQ5Wv2GzjAG07a-Rs/s1600/IMG_3424+-+Copy.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLovf6ZdI0N2fP86Bx975UId5DhHtEqTlB1mgogebpHr96cdmJNpmTXpOYv3f3CHu25EWawfobvpAP35aJdQ0l2ldTRLnBt0Frc7ewFSnZIiArgzrm8ZYUn5J-3qoQ5Wv2GzjAG07a-Rs/s1600/IMG_3424+-+Copy.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even at 106.1 he was trying to smile in the ER.</td></tr>
</tbody></table>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;">That was the question Sergio decided he was going to try and
answer for us Friday evening. Now, this child has gotten "hot"
before, up to 106.5 and I don't really even bat an eyelash, as long as he's
getting the medical intervention he needs. . . but, Friday was a different
story. </span><span style="font-family: Calibri, sans-serif; font-size: 13.5pt; line-height: 115%;">We landed in the ER at 3:00 am due to a fever that was moving rapidly
and he was looking very sick, very fast.</span><span style="font-family: Calibri, sans-serif; font-size: 13.5pt; line-height: 115%;">
</span><span style="font-family: Calibri, sans-serif; font-size: 13.5pt; line-height: 115%;">It earned him a trip to the PICU.</span><span style="font-family: Calibri, sans-serif; font-size: 13.5pt; line-height: 115%;">
</span><span style="font-family: Calibri, sans-serif; font-size: 13.5pt; line-height: 115%;">During the day the docs and nurses kept saying how good he looked,
despite the fact that I kept saying it was highly abnormal for him to sleep all
day and his heart rate was very high for him.</span><span style="font-family: Calibri, sans-serif; font-size: 13.5pt; line-height: 115%;">
</span><span style="font-family: Calibri, sans-serif; font-size: 13.5pt; line-height: 115%;">At 7:10 pm he decided to see how hot he could get.</span><span style="font-size: 13.5pt;"> </span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeQfZAn5GCGUwLf3667E5huDfcWwf5fS_9_lsg1UKKy7s0Ou_aZSCva77J9V4k9VLkRdd1zz1wM-sbSQtcGK5tKV8JRMeA5RRYQQ_pxhhjF3L-3ouHKUyj_l2cAQ9L0E_gZ0hUsBJARwo/s1600/IMG_3430.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeQfZAn5GCGUwLf3667E5huDfcWwf5fS_9_lsg1UKKy7s0Ou_aZSCva77J9V4k9VLkRdd1zz1wM-sbSQtcGK5tKV8JRMeA5RRYQQ_pxhhjF3L-3ouHKUyj_l2cAQ9L0E_gZ0hUsBJARwo/s1600/IMG_3430.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He had just reached 107.3</td></tr>
</tbody></table>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">107.3. That's how hot he can get. I pray that's the
hottest he ever gets again. It was the highest temp of the new PICU,
where we were thank God when he pulled this little stunt, but not the highest
of the hospital. The record was 108.1 for a little girl with a massive
abscess in her abdomen. They drained it and immediately she recovered and
was on her way. That's impressive. Sergio's wasn't so easy. </span><span style="font-size: medium;">He shook harder than any seizure I've witnessed.</span><span style="font-size: 13.5pt;"> </span><span style="font-size: 13.5pt;">He cried out in agony as his body was
violently put through a temperature change of over 8 degrees in less than 15
minutes.</span><span style="font-size: 13.5pt;"> </span><span style="font-size: 13.5pt;">He turned purple as the blood
vessels clamped down to preserve his organs and his heart rate sky rocketed to
over 200 beats a minute.</span><span style="font-size: 13.5pt;"> </span><span style="font-size: 13.5pt;">Yea, he spooked
a few diehards in the PICU Friday; including me.</span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: 13.5pt;"><o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;"> </span><span style="font-size: 13.5pt;">It's the line again. That damn, lifesaving, life giving, and
potentially life taking line; the one that feeds him because his gut just
refuses to work for some unknown reason. The line that keeps him growing,
thriving, hydrated, and fed. Pair that line with a gut that is full of
bacteria, as we all are, and a gut that likes to just share those bacteria with
his blood stream, again for some unknown reason, and you have disaster.
These disasters happen about once a month again. We do get breaks
(the longest one was 18 months!) where he stays infection free, and then bam!!
We get stuck in this vicious cycle that is trying the best of the docs
here. . . and me. </span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXZCSZVEmyhZTGg8lJxutYVRPCI2gbtP9AoJi-02WZPukuuXdYpvs5SpmFBxrqqSS5ltaNaS7i323i25IJJ55f1-MV_zx6iF_p6fCB0_x85ph7vcIf0Ra9bxOpHd1OcF-QHYkxUjOdhVE/s1600/mcgyver.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXZCSZVEmyhZTGg8lJxutYVRPCI2gbtP9AoJi-02WZPukuuXdYpvs5SpmFBxrqqSS5ltaNaS7i323i25IJJ55f1-MV_zx6iF_p6fCB0_x85ph7vcIf0Ra9bxOpHd1OcF-QHYkxUjOdhVE/s1600/mcgyver.jpg" height="149" width="200" /></a></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: 13.5pt;">I consider myself a pretty good problem solver. I like
murder mysteries and often solve the "mystery" of a movie before the
end. I like games like Words with Friends, because they make me think and I
love my medical apps that give me a case and I have to solve it (I've gotten
pretty good too LOL - thinking of charging $20 for advice at this point!).
But I've lived with a walking, breathing, strong headed medical mystery
now for over 6 years and I can't figure the answers out. That's a kick in
the gut. I can solve random crap but not the one that really counts. <o:p></o:p></span></div>
<div style="margin: 0in 0in 0.0001pt;">
<br /></div>
<div style="margin: 0in 0in 0.0001pt;">
<span style="font-size: medium;">Sergio can't talk. But he can communicate beautifully.
Sergio is smart, but he'll make you think otherwise if it means you'll
ask him to do less. He'll play smart if it benefits him to do so. Sergio
can read (not at grade level, but can read words), he can spell, he can count
he can problem solve and is incredibly resourceful in devising ways of getting
to his water sources. He is sly and creative and is his own favorite
comedian (he literally will sit in his bed and crack himself up with evil
little thoughts! LOL) He is an integral
part of our family. The nurses that care
for him in our home, love him like he was one of their own. </span><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; font-size: 13.5pt; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjPJw0Uj1WaAMTF5BbwJ0987XskzkRJU6ytMZ5XDLwcgTBfoAxByKNW2clqulEmvt8jJPpBTRaIz-qXbgGTKFPRfxAeLIOPE1fO8R6SVuMhuig7Hv0wkqAH-FE6gsZ703mSwtf0eY5nR4/s1600/IMG_3446.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjPJw0Uj1WaAMTF5BbwJ0987XskzkRJU6ytMZ5XDLwcgTBfoAxByKNW2clqulEmvt8jJPpBTRaIz-qXbgGTKFPRfxAeLIOPE1fO8R6SVuMhuig7Hv0wkqAH-FE6gsZ703mSwtf0eY5nR4/s1600/IMG_3446.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Two days after his little fever fest.</td></tr>
</tbody></table>
<span style="font-size: medium;"> The nurses in the hospital argue over who
will have him to care for. Why do I say
all this. . . because he’s worth the fight.
He’s worth the time, energy and mental anguish to pull him through these
awful infections again and again. I
often look at Sergio and think; “Do the doctors see what I see, and do they
think we should fight as hard as we do?”
I never let my mind think the unthinkable, that maybe just maybe, this
disabled little boy isn't work the money or time. But, their actions speak louder than my
worries. They fight like hell to keep
him going as I fight like hell right along with them. The doctors have pained looks on their face
each time we have to talk about replacing a line, or what to do with this
severe infection or how do we keep this from happening. They just don’t know either.<o:p></o:p></span></div>
<div style="margin-bottom: .0001pt; margin: 0in;">
<br /></div>
<br />
<div style="margin-bottom: .0001pt; margin: 0in;">
<span style="font-size: medium;">So in the end, the mystery stays just that, a mystery. My little spit fire who loves his naked,
backless potato heads (preferably in water).
My naughty little man who sticks his tongue out at everyone now because
he knows it gets a rise out of virtually anyone that works with him. My mystery man who has mastered the best
primal growl you’ll ever hear from a human when he doesn't like the outcome of
a plan he had devised. And as everyone knows,
a mystery is just waiting to be solved and so I will. . . hopefully it will be
in time. <o:p></o:p></span></div>
</div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com2tag:blogger.com,1999:blog-8852998556650557066.post-40181287555172073982014-07-28T10:01:00.001-04:002014-07-28T10:01:19.492-04:00Days of Summer....<div dir="ltr" style="text-align: left;" trbidi="on">
<div align="center" class="MsoNormal" style="text-align: center;">
<b><span style="font-family: Georgia, serif;">“</span></b><cite><span style="font-family: Georgia, serif;">There is a sacredness in tears.
They are not the mark of weakness, but of power. They speak more eloquently
than ten thousand tongues. They are the messengers of overwhelming grief, of
deep contrition, and of unspeakable love.</span></cite><b><span style="font-family: Georgia, serif;">”</span></b><span style="color: #666666; font-family: "Georgia","serif";"><br />
<br />
</span><b><span style="font-family: Georgia, serif;">― Washington
Irving<span class="apple-converted-space"><o:p></o:p></span></span></b></div>
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<br /></div>
<div class="MsoNormal" style="line-height: 150%;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"> It’s pouring out and the house is quiet. . . the two
noisy ones are at summer school. Thought
it was a good time to put some words to
“paper”. Marriela has advocated that I
take up Vlogging. I think not. There aren’t a lot of pics of me out there
and there sure as heck not going to be videos floating around the world of my
mug talking with my irritating nasal voice.
Oh my. So I’ll stick with the
Blogging, which she completely disagrees with.
Sigh, sorry to disappoint sweet girl!<o:p></o:p></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"><br /></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">This was supposed to be the update following our incredible
Make-A-Wish trip to the indoor water park.
Sergio became very sick and spent 8 days <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX_N-yVmVb2sTOggIrHMOIMRrpvoh6zgeVmllcbYqMEIaMCSzJrSIytJ5Khf2X6tntJsMCjkGBtNs9g5pL_lpVExgrmIZ4cz6P21BtA9myFtXOEFHpAm_3oLDgbbtuxvLiVi3fgQvnnm0/s1600/IMG_3247.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgX_N-yVmVb2sTOggIrHMOIMRrpvoh6zgeVmllcbYqMEIaMCSzJrSIytJ5Khf2X6tntJsMCjkGBtNs9g5pL_lpVExgrmIZ4cz6P21BtA9myFtXOEFHpAm_3oLDgbbtuxvLiVi3fgQvnnm0/s1600/IMG_3247.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sick little man.</td></tr>
</tbody></table>
in the hospital instead. But he defies the odds and the antibiotics,
despite not <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYo5AJ3ZQKsy2Fqn63rdB0vJhKwkrLECaB7aH6pXDKf3J5VkLrKSrBsyiOXemDg-Tx8LXmB7Ko8Ry61fZ4jA6JR813z14vq1Bqgh8koqM1KHzfB3sXkvXueCfH-1qSfLvqSVBLDw8Sscs/s1600/IMG_3178.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYo5AJ3ZQKsy2Fqn63rdB0vJhKwkrLECaB7aH6pXDKf3J5VkLrKSrBsyiOXemDg-Tx8LXmB7Ko8Ry61fZ4jA6JR813z14vq1Bqgh8koqM1KHzfB3sXkvXueCfH-1qSfLvqSVBLDw8Sscs/s1600/IMG_3178.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sprinkler time!</td></tr>
</tbody></table>
working for many days, have successfully cleared the infection once
again. I asked his doctor the odds of
saving his line, he said it was 50/50, but Sergio has won the 50/50 coin toss
over 80% of the time, so he would never bet against him. </span></b></span><span class="apple-converted-space"><b><span style="font-family: Wingdings;">J</span></b></span><span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"> That’s my boy!! If only we could put that
good luck into something far more productive than saving central lines! <o:p></o:p></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"><br /></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">Anyway, back to topic at hand.
We didn’t get to go on the trip.
We are looking at trying again the last week of August. We started a new method of giving his
Immunoglobulin treatment and so far it is going very well. He is now getting it via little needles in
his tummy and a pump pushes the IG into his tissues where it absorbed over the
next week. We repeat this weekly rather
than going for one big dose IV each month. The IV method was causing severe
reactions that were also resulting in hospitalizations so I didn’t think
quality of life was being met the way it should be. Praying this helps with infections AND
decrease the reactions so we get all the positives and none of the
negatives. <o:p></o:p></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"><br /></span></b></span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5S96zsMqI9cxJoLyn-L-b2cx-S-eNNLjNr7zSxe8-HJqWlIFXng2ikb_56mjK7y7lFWXeeJrHWMB0VmlCfQ11TKPxmxCcZhqzRUAIkJNqzFDcFb5iDqFPGhujHSv9aOKijrFLloNxdlo/s1600/IMG_3204.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5S96zsMqI9cxJoLyn-L-b2cx-S-eNNLjNr7zSxe8-HJqWlIFXng2ikb_56mjK7y7lFWXeeJrHWMB0VmlCfQ11TKPxmxCcZhqzRUAIkJNqzFDcFb5iDqFPGhujHSv9aOKijrFLloNxdlo/s1600/IMG_3204.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The first fireworks the boys have seen.</td></tr>
</tbody></table>
<div class="MsoNormal" style="text-indent: 0.5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"><span style="line-height: 150%;">The rest of the kids took the news of a delayed trip better than
we anticipated, especially a certain little brown girl who </span><span style="line-height: 24px;">doesn't</span><span style="line-height: 150%;"> handle
change well at all! I did cushion the
blow by scheduling her Hawaiian themed birthday party for the local public pool. This was a nice distraction and now we’ve
been researching Luau themed birthday supplies on every site we can find. Summer school, and the anticipation of
several other fun things have helped create the distraction we needed. <o:p></o:p></span></span></b></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<br /></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<br /></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeHsjfNLVRH44szrR4WC5GcmapqY9aTY7NZQNul9jLWmlsQfvz2uf8nyCExQ2MJbVTNauU9QUu2qe2k4GCinei-vLrprTpO1be_WYW72s4gnDcX6iEfPg0RMqTGYUpQW6RPJrdmQmRZEo/s1600/IMG_3342.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeHsjfNLVRH44szrR4WC5GcmapqY9aTY7NZQNul9jLWmlsQfvz2uf8nyCExQ2MJbVTNauU9QUu2qe2k4GCinei-vLrprTpO1be_WYW72s4gnDcX6iEfPg0RMqTGYUpQW6RPJrdmQmRZEo/s1600/IMG_3342.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thinking of making one of these for home!</td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh0iRe3HQ5Q7PtODH96F-8LzVWSezUua2sADU4zj_Yc9JgggYdNQYNPpQMvzqIjMuShetPQLgNAb1H9OyYqCBAVCshx3NdRAj3UmouooroEOk5VMAlK0ikE_UZ5nKwlNaXM__xeSLk5gs/s1600/turkeylegs.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh0iRe3HQ5Q7PtODH96F-8LzVWSezUua2sADU4zj_Yc9JgggYdNQYNPpQMvzqIjMuShetPQLgNAb1H9OyYqCBAVCshx3NdRAj3UmouooroEOk5VMAlK0ikE_UZ5nKwlNaXM__xeSLk5gs/s1600/turkeylegs.jpg" height="112" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying our turkey legs!</td></tr>
</tbody></table>
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<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">This past week we took four of the kids to the Renaissance
Festival. Tray, Cody and Marriela really
loved it!! Marriela got so much more
from the shows than we anticipated. Cody
and Tray loved all the armor and other crazy outfits people looked just a tad
too comfortable walking around in.
Joshua went to Casey’s Place Medical Respite where he decided he should
keep them on their toes and started seizing badly at the park. But they gave him his rescue meds and he
pulled though and stayed the rest of the weekend. He LOVES that place and it’s the only place
he can go safely. Sigh. <o:p></o:p></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"><br /></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">This week we are leaving for four days to the Brian Bisgrove Home
of Courage in Owasco, NY. What an
incredible gift for our family. I’ve
talked of this incredible place before, but please know this is really is the
closest thing we’ve had to a relaxing family vacation in six years. We did go for four days <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikn6o1qQtwQn1HP60_fJrf9P089vOy_Se8-7cezaBPk90Qb740PyQXLAwT8SNJjZvu4hdKYmqrwrs-xQZITtMKNBLHc1EVVpBPI0IwTHLAXKxGDjLR_to_e_omKWkEGrmWwE6b405yjWg/s1600/IMG_0326.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikn6o1qQtwQn1HP60_fJrf9P089vOy_Se8-7cezaBPk90Qb740PyQXLAwT8SNJjZvu4hdKYmqrwrs-xQZITtMKNBLHc1EVVpBPI0IwTHLAXKxGDjLR_to_e_omKWkEGrmWwE6b405yjWg/s1600/IMG_0326.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last fall at the Home of Courage</td></tr>
</tbody></table>
last summer to Lake
George and had a great time! But, it was
intense, I was running 2 antibiotics for Nettie’s severe knee infection, 2
antibiotics for Sergio’s recent line infection and all of the other meds and IV
stuff that is routine. The Home of
Courage is just relaxing. There is no
pressure to “go” anywhere. Just hangout,
fish, shoot bb guns, put together puzzles, cook out and get as close to
“camping” as we can without risking the kids.
I am looking forward to it!!!<o:p></o:p></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"><br /></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">The week after that, Cody is going to a Ninjago Lego camp, then
Tray leaves for a week for his Camp Hope with Heart near NYC and the week
after, Joshua goes to his Camp Hole in the Woods camp for 4 days near Lake
George. THEN we hope to take the kids on
the Make-A-Wish trip as Sergio will be suffering from severe cabin fever by
that point!! <o:p></o:p></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"><br /></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">Tray and Cody are very into “Zombies” and how to survive an
apocalypse. I asked them to research the CDC site and find a list of 20 items
they would need to take in an emergency to survive. A few of their answers. . . brace yourself
for the well thought out ideas. . . don’t be shocked if you didn’t think of
some of these. . . ready?? A teddy bear,
Bo and Mazzy (our dogs), a “blunt object”, toilet paper, a note to say good-bye
to the family, food, a bandaid (just one apparently is all you need for a
zombie bite), layers of clothes, a book to read, and the best. . .
berries. I’m pretty sure they both
spelled batteries wrong, <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjestNLOROwlRBdbrzIeaDigjO6bQJaY68bMQl5zNk4A7FP72vUhyX8bh6T-09Rs8K5dpamjvteptwz_KRz8_IPCAPeA5kgkuoxUCvkKGfurzGmrwRVBpWzohQ6QwOeWZDUtQXTZJmpu00/s1600/IMG_3322.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjestNLOROwlRBdbrzIeaDigjO6bQJaY68bMQl5zNk4A7FP72vUhyX8bh6T-09Rs8K5dpamjvteptwz_KRz8_IPCAPeA5kgkuoxUCvkKGfurzGmrwRVBpWzohQ6QwOeWZDUtQXTZJmpu00/s1600/IMG_3322.JPG" height="150" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A day at the park.</td></tr>
</tbody></table>
at least I’ll just hope that was their thinking. Clearly they will not be surviving well for
too long in the event we </span></b></span><span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">need to really leave in an emergency. There were some good answers (with some
prodding) like their meds, a knife, some water, etc. LOL
Marriela just said not to worry ‘cause we’re going to Heaven soon
anyways. . . this is a running theme with her, should I be worried?? She has plans for my pictures, our house and
my ashes! LOL <o:p></o:p></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;"><br /></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">The kids are all doing well.
Tray is so healthy and strong and his last biopsy in June was
perfect. Cody has had almost no issues
with his asthma and he is excelling at his Jui Jitsu. Joshua has actually been doing very well
relatively speaking. He has about 3
seizures a day, mostly when he first falls asleep or early in the morning
hours, or during naps. But he is happy
and well otherwise. Nettie is doing very
well and is always busy. She comes over
every other Sunday and next week is going to restart attending Church with her
new worker (at her request). I love her
so much! She will be going with us on
the Make-A-Wish trip and she is very excited about that! Marriela is doing well. She is growing, healthy and mostly
happy. Recently however, we are dealing
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfCXz3EnESlpC1s5ewXS07EkIZHyZ8wHu1Nn7JZDeeVNLWJJROC5YSvhEWDme18IGSgv4QOX31ZlBxInDWFGvRdpuF0Ml9Q0bqGGVzksmCH-m_PNmLGuUNObOkS4laMCojbhduWMkkRXs/s1600/IMG_3302.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfCXz3EnESlpC1s5ewXS07EkIZHyZ8wHu1Nn7JZDeeVNLWJJROC5YSvhEWDme18IGSgv4QOX31ZlBxInDWFGvRdpuF0Ml9Q0bqGGVzksmCH-m_PNmLGuUNObOkS4laMCojbhduWMkkRXs/s1600/IMG_3302.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loving the pool!</td></tr>
</tbody></table>
with a lot of “anxiety issues” and an over focusing on recurrent worries. Starting a very mild med to see if we can
reign some of this in for her, as it really upsets her when she can’t “turn her
brain off” on a worry. She has to talk
about it, share it and just overall obsess and it is very upsetting. This results in tears and anger at her
“brain” and the panic like symptoms she develops as she becomes upset, such a
difficult cycle to break, and it hurts my heart to see her struggle with it so
much. But overall, her summer school has
been great and she is so excited about her birthday party! Trying to keep her focused on the things to
come. Sergio is <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNVo4UCpBJzJcVy-0Q24ay7jKnd3NrWXK-5khBFPoviBrpTUEoglX2_knsuHIi3Qq3WDdUdK0RhorV3eFIRjb8hnJvLO-ttlUhbekL0TmUalN1dqLtvQ708BdvMj0BpuH8f2FxTtvJRMs/s1600/IMG_3190.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNVo4UCpBJzJcVy-0Q24ay7jKnd3NrWXK-5khBFPoviBrpTUEoglX2_knsuHIi3Qq3WDdUdK0RhorV3eFIRjb8hnJvLO-ttlUhbekL0TmUalN1dqLtvQ708BdvMj0BpuH8f2FxTtvJRMs/s1600/IMG_3190.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First days of summer</td></tr>
</tbody></table>
doing well. When he’s not sick, he’s well. He is going to summer school, and the gets a
little water play in every day (more than he should, but he’s very
resourceful!) <o:p></o:p></span></b></span></div>
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">Well, this is long enough for today. Sending love and peace for a wonderful summer
everyone. <o:p></o:p></span></b></span></div>
<br />
<div class="MsoNormal" style="line-height: 150%; text-indent: .5in;">
<span class="apple-converted-space"><b><span style="font-family: Georgia, serif;">Renee<o:p></o:p></span></b></span></div>
</div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-80018278863984648422014-06-12T14:55:00.001-04:002014-06-12T14:55:20.776-04:00Messy Miracles in the Making. . .: Just a little update<a href="http://messymiracles.blogspot.com/2014/06/just-little-update.html?spref=bl">Messy Miracles in the Making. . .: Just a little update</a>: So much happens in such a short time, it's hard to keep up with it all via this blog. I guess I should do it more often. So here'...Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-44204179323830497932014-06-12T13:07:00.001-04:002014-06-12T13:07:17.454-04:00Just a little update <div dir="ltr" style="text-align: left;" trbidi="on">
So much happens in such a short time, it's hard to keep up with it all via this blog. I guess I should do it more often. So here's a synopsis of where the CurkGang is right now. . . knowing this may all change by tonight. LOL<br />
<br />
Today I have Cody and Marriela home. Marriela is highly agitated that she was "given" a cold and that I should be able to "take" it away as easily as it was given. Not sure how to explain the epidemiology and transmission of viruses to my daughter, and if it doesn't end with "sit down and I'll take the stuffy nose away" it's all for naught anyways. So I conceded that she's not a "fun" sick person. Cody on the other hand, as long as his fever is down, is very fun. Already beat him at a game of Battleship and now he's dueling it out with a virtual friend on Call of Duty while his antibiotics go to work. Other than the continuing noisy wheezing you can hear from a room away, he seems just fine now. <br />
<br />
Peter is on his way to Elmira. They have created an end of the year award for athletes: The Peter Curkendall Male Athlete of the Year Award. How cool is that? This is the awards first year so he's going down to present it. His dad is also in the ER again, second time in 2 days, and only 3 days out of rehab for 5 weeks. It's very hard to watch our parents age and see them struggle with things. It occurred to me that I am now the same age as my mom was when I married Peter. How amazing is that? It's wonderful and scary. So please pray that we can find the means and way for Peter's dad to be independent AND safe. <br />
<br />
The rest of the gang is well. Trayvon is growing like a weed. Size 14 feet (Lord I hope he doesn't grow into those feet!!) and officially "almost" as tall as I am (5'9") he just keeps looking more and more like a man every day. My sweet little boy who struggled to grow at all from 2 - 5 years old is now a growing machine (and an eating one). Joshua, though done growing up, seems to still have room to grow "out". We gave a trial off of his Adderall. Due to his seizures and the inability to just "go out" anytime he would like, physical activity is difficult. In addition, his Traumatic Brain Injury creates a chronic fatigue that the Adderall clearly was helping with. Off of it, he is always hungry and slept all the time. So he's back on it and as of today he was happy with only one bowl of cereal! LOL That was a learning curve I'm happy we've jumped off of! Seizure wise, it seems he's having another increase. He's needing his ativan about once a week or so. But, this tends to cycle, so we'll see how it goes. <br />
<br />
Sergio is holding his own. The IV medication that has helped him stay free of ear and lung infections, may be the culprit in his monthly admissions. It seems that after every infusion he has a severe inflammatory response that results in fever and admission. We are withholding this month's dose to see if our suspicions play out. If they do, we're going to try a "sub Q" version, in which we place several small infusion needles in his tummy and infuse a smaller amount over a few hours weekly, rather than the one large dose monthly in his IV. There seems to be a history of fewer reactions to this method so we pray that holds true for Sergio as well. <br />
<br />
Nettie is doing well. She has unfortunately begun to experience a "treatment failure" in that she is having side effects of her HIV medications as well as small bump in the amount of virus found in her blood. Because of the two issues, she has now been changed to a whole new medication regime. The first change in over 13 years!! That's unheard of, so I guess I can't really complain. It's amazingly wonderful that we actually have all new meds for her to go on because, only 5 years ago, she had taken them all at one point or another so if this had happened then, there were few choices to work with. Today that is not true. Even MORE amazing is that the three new meds are combined into one pill she only has to take one time daily!! That means she goes from taking 9 pills a day to only one! She loves that. The side effect she was having from her old meds is neuropathy of her feet. Her toes are burning and painful, which is compounded by her need to wear foot/leg braces and use a walker. She has said that the burning isn't as bad since changing the meds so we are praying it's all reversible. Otherwise, she is doing fantastic!<br />
<br />
Peter and I are chugging along with school. I have actually graduated with my M.Ed. in Education Administration. Once I take my exams I'll be certified as a school building leader (principal). Peter is within a semester of starting his 3000 hours of internship and is researching local options. We are so close to finishing! I am just going a bit longer to get my School District Leader Certificate so I can work as a Special Ed director or other district leadership position. These credits will apply to my doctoral degree, eventually I will complete that as well in the future. <br />
<br />
That's us in a nutshell. Have a wonderful day.<br />
Love,<br />
Renee<br />
<br />
<br /></div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-75014464828836771592014-05-11T17:17:00.001-04:002014-05-11T17:17:19.963-04:00Motherhood. . . <div dir="ltr" style="text-align: left;" trbidi="on">
<div class="MsoNormal">
Mother’s Day. . .
well, actually, every day is mother’s day. I am blessed daily to be mom to wonderful
children. I am blessed daily to do all
the things a “mom” just does and I’m even blessed to do the things moms don’t
want to do (like clean the toilets. . . God really should have focused on the
aiming capacity of boys or we need to invent wider bowls, but that’s another
blog). I am the mother of my children in
both the “traditional”, home-grown way, and the non-traditional “adoption”
way. I have held two children as they
entered this world and I held a child as she left this world. I have grieved over a child that was not to
be due to an ectopic pregnancy. I have
grown close to foster moms who gave an incredible piece of their hearts to
their little packages and then turned them over to another family to
adopt. I've watched the pain of biologic
parents as they grieve and celebrate their child’s life from afar. I sooth my children who so wish they knew who
their “real” moms were, if only to say, “see, I’m doing ok and thank you for
letting me get adopted.” I hold the
hands of my children as they endure the tortures of modern medicine in an
effort to improve, increase, and enhance their lives. I've watched as modern medicine failed to give
us the answers and treatments needed to continue any further. <o:p></o:p></div>
<div class="MsoNormal">
Being a mother is a responsibility, a job, a need, a
requirement and an honor. Some days I
wish I could turn off the ability for my children to yell “Mom!” for even a few
hours. But, then, when it’s quiet or one
of my children isn't home, I long deeply to hear that same word. My eldest moved out almost two years ago and
I still ache to hear her in the room next door, asking me if I’m scared of the
thunder, knowing she’s all alone at her own home now. . . terrified of the
thunder. When I hear my name screamed in
“that tone”, the one that signifies a major ordeal or trauma my heart skips and
my adrenaline goes into full force. And
once that trauma or ordeal has passed, I get to hold my child and wait for the
internal panic to settle and move on while soothing a human being I, incredibly,
have been allowed to be responsible for. <o:p></o:p></div>
<div class="MsoNormal">
I have known since I was a child I’d have a “different” kind
of family. I don’t know how I even knew
about adoption; I didn't know anyone who was adopted. I just knew that I was going to be mom to
someone else’s children as well as experience motherhood from my own
perspective. I did not expect however,
that adoption would have been the first step!
I did not anticipate that after my ectopic pregnancy, having a child
would elude us. Nor did I anticipate the
incredible loving bond I formed with my student, Annette. God knew all along though and allowed me to
gather the courage to approach motherhood at the age of 23 from a very different
avenue than I had envisioned. Living
with my child in a hospital for almost two years never crossed my mind when I
thought of my family planning. . . now, it seems like it was always a stepping
stone for some other new challenge that lay ahead. <o:p></o:p></div>
<div class="MsoNormal">
I am deeply honored, blessed, grateful and humbled in my
role as a mother. I can’t imagine a
greater responsibility in life, nor could I imagine doing it without the man I
knew would be the one and only man who would join me on this crazy
journey. Again, God knew, and the path
was set with or without my input. <o:p></o:p></div>
<div class="MsoNormal">
Happy Mother’s Day to each and every mother. To those whose children have grown and left
the nest, to those who struggle with health needs and the need to be a mother –
what an incredibly difficult and amazing ability to juggle all that is needed,
to those who birthed but do not raise their children – without your sacrifice
(willing or not) I would not have been blessed with 5 amazing children to call
my sons and daughters, and to those mothers who have angels on high – the hole
left with the passing of a child is beyond words, the sheer ability to carry on
to continue caring for others and yourself is nothing short of a miracle. I know some truly amazing women in my life
and each and every mother I've ever met has helped me learn how to be an even
better mom. Thank you.<o:p></o:p></div>
<div class="MsoNormal">
To my own mom: though we did not see eye to eye on most
things earlier in our relationship, I can’t imagine how life would have been
had I not had you as my role model. To
my sisters: we each went in different ways and we have each worked hard to do
the best we can in every crazy circumstance we found ourselves. I love you both. To my sister-in-laws: you are like sisters to me, each of you
(Brenda, Tammy, and Millie). I may not
talk to each of you anywhere as often as I should or could, know that I love
you. <o:p></o:p></div>
<br />
<div class="MsoNormal">
Happy Mother’s Day my friends. <o:p></o:p></div>
</div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0tag:blogger.com,1999:blog-8852998556650557066.post-18946855009972144152014-05-03T21:44:00.001-04:002014-05-03T21:44:32.072-04:00Breath in, breath out, repeat. . .<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="separator" style="clear: both; text-align: center;">
<a href="http://toonclips.com/600/7141.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="http://toonclips.com/600/7141.jpg" height="200" width="193" /></a></div>
Honestly, sometimes I'm so tired this is enough to make me exhausted. With full time school, full time family, part time internship, and musical beds most nights, it's hard to really catch up. I know for a fact, we are not alone in this dilemma. I realize that parenthood in general is exhausting, but sometimes, even once, I'd like to FEEL rested even if I'm not really. <br />
<br />
<a href="http://www.stjohns.edu/sites/all/themes/sju/logo.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="http://www.stjohns.edu/sites/all/themes/sju/logo.png" height="69" width="200" /></a>With that said and the little rant over, things are good. Really good. I have officially finished my internship and at the close of this semester I graduate with my Ms.ed in Education Administration. In addition to that, I went through the many, many hoops NYS has created to re-apply for my teaching certification as a Teacher of the Speech and Language Disabled. I took two exams for state credentialing, had to take an exam for credit (6 graduate level credits!), I I had to complete 3 workshops and have my fingerprints done once again. Now I pray, hard, that the deem my past transcripts as successful in meeting all of their requirements. If they do not approve it, I essentially would have to go back and do a BS degree all over. On 5/1/14 NYS changed ALL of their requirements and have all new exams. My past degree is, in essence, erased. Sigh. Like I said, I'm praying!!<br />
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Sergio has just celebrated his 8th birthday. At four I was overwhelmed with the magnitude of the health changes he was undergoing. Thinking TPN was going to be a temporary 6 month or less endeavor, until his gut started working again. At 5 the start to of the never ending hospitalizations for weeks at a time. At 6 being given no hope that he could beat a fungus infection that had overtaken his entire body and we were sent home on a regime of drugs that no one can even find in any medical literature. To the amazingly wonderful 18 months of absolute stable health and no hospital admissions. To 7 when the vicious cycle <br />
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started all over again. Here we are today, incredibly blessed to be outpatient now for over 2 months! He's happy, healthy (in a very relative term) and still keeping us on our toes day and night. His Make-A-Wish trip is now in the planning stage with the organization and we were blessed again with a wonderful duo of experienced wish planners. They are kind, compassionate and appear to understand the level of needs each of the kids present when planning a trip for a particular child. We'll give more details when things are more solidified. :-)<br />
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School is almost over for the kids. I'm so proud of all of them. Granted, Tray has given us a few extra gray hairs, but that's what a healthy child should be doing!! He is feeling strong, invincible and adventurous. He's also now feeling grounded, phone-less and for some time he was x-box-less. But we've given back some things and he has held up his end and is keeping his nose to the grindstone and out of trouble. We were REALLY close to going to homeschooling and then I thought. . . . who am I kidding!!?? I've always said I could NEVER homeschool, I'd kill them all. LOL So after talking, yelling, withholding and loving, he is moving in the right direction again. I'm happy. :-) That was a close one! <br />
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Marriela, Cody and Joshua have all had good years. Joshua is officially a senior next year, but hopefully we can talk him into staying until he's 21. We'll see. If not, we'll find him a program to get him into a home based business like Nettie. Speaking of Nettie, she recently had 2 very large orders and now has enough to buy a laptop!! We are so very proud of her and in a month we'll be looking to hire her own personal business assistant to help with all of the card making, paperwork, and businessy stuff. Here's her website again if you haven't had a chance to visit. <a href="http://www.fortheloveofpeace.webs.com/" target="_blank">www.fortheloveofpeace.webs.com</a><br />
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Peter is getting very close to the end of his schooling as well and will be looking at his internship (3000 hours!) by the fall. It seems like just yesterday we were signing up on-line and laughing that we'd never get accepted! Who knew??<br />
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Well, that's it for now. Just felt like it was time for a bit of an update. Hope this finds you all happy, healthy and in company of loving family.<br />
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Hugs,<br />
Renee </div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com2tag:blogger.com,1999:blog-8852998556650557066.post-34372135193916834892014-02-16T09:56:00.001-05:002014-02-16T09:56:15.087-05:00Time To Make A Wish. . . <div dir="ltr" style="text-align: left;" trbidi="on">
After a several scary episodes, after several years of unpredictable trips to the hospital, after 3.5 years of hoping the TPN will only be temporary, after attempt after attempt to use a GI tract that is defies logic. . . we are asking for a referral to Make-A-Wish. I knew "one day" Sergio would get a wish. I had only hoped it would be when he was much older so he could be more communicative on what he would like. Not knowing the future or how the unpredictability of his many issues will play out, we feel now is as good a time as any. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCBclpBnuGPnKrSZg0IRhRPj1W-Do3yqgh2lB0EPOe25fBWifcAzd2CXRGUcx65_3Cl9Ozdx7But0pL01LF-Z-pJyvG1yD41Plc767S-dw3E4nLAWl-8SQOwGee1O1aLGpPfUIQ33CrK4/s1600/IMG_0337.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCBclpBnuGPnKrSZg0IRhRPj1W-Do3yqgh2lB0EPOe25fBWifcAzd2CXRGUcx65_3Cl9Ozdx7But0pL01LF-Z-pJyvG1yD41Plc767S-dw3E4nLAWl-8SQOwGee1O1aLGpPfUIQ33CrK4/s1600/IMG_0337.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of our scariest stays yet.</td></tr>
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So, what do you say to the wish granters who want to help "build" a dream come true for a child that can't speak. Anyone that knows Sergio, knows he can most certainly "communicate" and does so all day long - from yelling at you when you tell him to get out of the sink, come down from the top of the stairs, get out of the toilet, etc, etc. To when he asks for his brother, Cody, to get into bed with him and play monkey. To when he requests very specific things for YouTube (Spider-man Potato Head, pumpkins, babies, etc). Yet, how can he tell the wish granters what we KNOW he'd want to if he could. <br />
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Peter and I talked a long time and we realized that Sergio's wish isn't something concrete. It isn't a specific trip (he loves Potato heads - but only in so far as he can bounce them, not actually dress them and such). It isn't meeting someone. Those are the categories listed on their site. After a great deal of thought, throwing ideas into the hat and dismissing them almost as fast, we realized Sergio has shown us what he would love. A VACATION! One of the happiest times we've ever seen Sergio was last summer on our trip to Lake George. He had never been on a trip with us up until that point. He LOVED the hotel. He slept in bed with me every night. He LOVED the boat ride. He LOVED the many different places we went. He LOVED being away. We had the best vacation ever and it was only 3 short days long. Every one of our child loved the experience and we feel this is what Sergio would like and want if he could ask. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0NE-NuMJwN2TCyxGw0epFU8r-5j7ZToO0LlGNHCCptahi-BVRoH1-vxVykeULnNuKNJHemTu49Sb06GOCs09gQonP0VBzuycLn7tCdfWjJH1tQv0nkE2Nz90nVu7fWX3UfHn6TMXw4eQ/s1600/IMG_5270.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0NE-NuMJwN2TCyxGw0epFU8r-5j7ZToO0LlGNHCCptahi-BVRoH1-vxVykeULnNuKNJHemTu49Sb06GOCs09gQonP0VBzuycLn7tCdfWjJH1tQv0nkE2Nz90nVu7fWX3UfHn6TMXw4eQ/s1600/IMG_5270.JPG" height="200" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sergio LOVING the boat ride!</td></tr>
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He can't fly, he can't go in water, he can't withstand heat, or cold, he can't be far from hospitals and he has to have the ability to get out and move regularly. We have to travel with 3 wheelchairs, need a refrigerator for TPN and meds and storage for monitors, medical supplies for all of the children, and car seats for two kids. Sounds like a road trip to me! A larger RV type vehicle that can fit all of us and our equipment with plans to stop along the way to stay at hotels and maybe even an amusement park during the time of day Sergio is most inclined to enjoy it. . . is perfect. <br />
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I couldn't talk about it without tears when we first broached this subject. I found myself seeing it as yet another leg of "finality" in his overall journey. Now, I feel very different. I know this is something Sergio will truly love, as will the rest of the family, as we make amazing memories together. He will be a part of something we would never be able to do on our own and our family will be whole, happy, and free to be so. <br />
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I pray hard that the wish granters will see what we see when we look at those pictures of last summer. I pray they will listen to Sergio and his sweetness and look at the complexity of his needs and realize that there isn't a "package" that he can be a part of. I pray that they understand the number of factors that complicate his ability to participate in so many of life's activities. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNkRHdCWUtK2JsXx3lLEtRi0xLdPj8CMg1zgRYRd3SRyaoRBgkz3SuNbOFr_GsNjDnH3wVpvwBpa7y__-C2zyCvoU124Ect71Qoum6165FzEMSv4KFRhUlQ7mPFPHfmINS8C-ndjPUdo/s1600/IMG_5286.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhNkRHdCWUtK2JsXx3lLEtRi0xLdPj8CMg1zgRYRd3SRyaoRBgkz3SuNbOFr_GsNjDnH3wVpvwBpa7y__-C2zyCvoU124Ect71Qoum6165FzEMSv4KFRhUlQ7mPFPHfmINS8C-ndjPUdo/s1600/IMG_5286.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A little sister and Sergio time in the bed at the hotel. </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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The referral will go in this week. I am now excited and see this as the amazing opportunity it is. I have faith that all will work out and that Sergio will make memories, have fun, live a full experience that he would otherwise not be able to participate without the help of Make A Wish. To me, that is the very nature of their mission. <br />
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With Love,<br />
Renee</div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com2tag:blogger.com,1999:blog-8852998556650557066.post-43479499011150801232014-01-10T17:37:00.000-05:002014-01-10T17:37:05.924-05:00Revelation. . . <div dir="ltr" style="text-align: left;" trbidi="on">
* I was prepared to post this a couple of days ago, since then, we've had a nice meeting with many of the key players. The battle is harder, the weapons are fewer, the warrior is frailer. However, the battle continues and we will fight. Sergio has shown no interest in giving up. He is happy and loving life while healthy and when he's sick, we'll work hard to get him through. In the mean time, we are looking at more options in how to assess his GI tract to trace where there may be areas of concern or remediation. We will re-assess his vascular system and see if there are other places to put new lines as they become infected. We will analyze his previous antibiotic experience and look for other options. So, I had another day of revelations. Revelations of hope to counter the ones of fear. And so the story continues. <br />
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<br />
1/4/2014<br />
<br />
Today was a revelation kinda day. We've all had them, maybe you realize a relationship needs to end, a job needs to change or your hair needs a new color. Whatever it is, we all have them. Today was a revelation day for me. Sadly, it was a revelation I've been banking wouldn't come anytime soon. <br />
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Today I heard the words that stirred the revelation to a new high. Gram pos. cocci and gram neg. anaerobic. I've heard those words hundred of times between all of my kids. What makes it different, is that this time, these two bacteria are failing to respond to the antibiotics we've been steadily pumping into my youngest son. This time, they are growing together and are refusing to remit to what is suppose to be their cryptonite. My sweet boy, Sergio, has no idea there is a war of all wars going on inside of his little body, right at this very moment. He is busy playing at school. He is busy being bad, being good, being funny, being mischievous, being Sergio. He is living and so is the bacteria. . . the question now, is who will win.<br />
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We are in for the fight, but we are fighting against an enemy we do not understand, nor do we have the ability to stop it from coming at us again, and again and again. His gut stopped working for all beneficial purposes, but has now turned on my sweet baby and poisons him monthly. In turn, infecting his life line to nutrition and hydration, his central line. Without a central line, there is no Sergio. With the central line, the bacteria have a party central to hang out and make him incredibly sick. There is no win, win here.<br />
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Sitting in the car I found myself having some very strange thoughts attached to this revelation. I realized my hair needs to be colored, I don't want to make big decisions with gray hairs showing. I realized my basement needs to be cleaned, I don't want to make big decisions with a messy house. I realized I need to get some good freezer meals made so there are things to eat. . . yeah, that one is always a need regardless of the days revelation's. Is this what other mothers thought when they were faced with the realization that life is changing dramatically for their child? <br />
So we march on, and fight as hard as we can while maintaining as much neutrality and home bound time as physically and medically possible. <br />
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</div>
Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com4tag:blogger.com,1999:blog-8852998556650557066.post-79044243696802908302013-12-12T10:10:00.001-05:002013-12-12T10:10:05.889-05:00Season of Miracles<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmalVr2P3RXjZkl09lK5gw7jmqbhT-xoDPqPfGxznh1XU7JLiuoKDuiKrCu8Q3uNRFC0A4FqVBQzIVd_TyOP4QsFxm-b8HFWkQrwcI6DlIupkHlhZ-wiZKYZDk8aSgHZl4BLyF4qAzx5M/s1600/IMG_0183.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmalVr2P3RXjZkl09lK5gw7jmqbhT-xoDPqPfGxznh1XU7JLiuoKDuiKrCu8Q3uNRFC0A4FqVBQzIVd_TyOP4QsFxm-b8HFWkQrwcI6DlIupkHlhZ-wiZKYZDk8aSgHZl4BLyF4qAzx5M/s320/IMG_0183.JPG" width="320" /></a></div>
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As I sit here, waiting for inspiration to flow through my finger tips, all I can think of is, phew. . . we made it!! It's been a challenging year in many ways, yet it has also been a year of amazing miracles. Without a doubt, we have witnessed several miracles unfold before our eyes, even if they were slow to evolve, they could not be denied once seen.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHblGt559TgnvFP6rKDJNibQN8wSg8wg5jvWR0g10sQZ5uhEWqnJ5XJDztrZCqbO58V0h7g3va1QcosLcG2uLOvMeRx0Aumwtr8Se_wlSTlDnto402RkHjzzDHjQUlA9vaqG6huCdring/s1600/IMG_0231.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHblGt559TgnvFP6rKDJNibQN8wSg8wg5jvWR0g10sQZ5uhEWqnJ5XJDztrZCqbO58V0h7g3va1QcosLcG2uLOvMeRx0Aumwtr8Se_wlSTlDnto402RkHjzzDHjQUlA9vaqG6huCdring/s200/IMG_0231.JPG" width="200" /></a><b><span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: large;">Trayvon:</span></span></b> He is only 2 months from his 2 year heart anniversary. Two years! How is it possible that we have lived two whole years since that amazing, scary and incredible ride. He is thriving. Trayvon is now 15 years old, 6 inches taller, 50 pounds heavier, and looking at life through the eyes of a child who sees a future. He wants to be a vet tech. It's truly a miracle to listen to a child, who at one point, was in danger of having no future, now consider occupational options. Tray has had no negative repercussions from his transplant that he is aware of. He feels and looks truly amazing. His heart is working hard, it probably always will do to his underlying lung issues that are a result of years of poor perfusion. But, he doesn't feel it, so we don't acknowledge it. He is going next week for his second annual cardiac catheterization. He goes every 2 months for a regular one, but he has one big and very involved cath to assess blood vessels and to look for even the tiniest evidence of chronic rejection. . . the arch nemesis of transplanted organs. Based on how he looks and feels, I suspect, they'll find nothing. He really is a walking, talking, miracle of modern science and God's great love. <br />
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<b><span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: large;">Sergio:</span></span></b> I was drawn to the edge of fear just a little more than a month ago, that this Christmas was going to be celebrated with another angle looking over us. His brush with death was as close as he and I and his doctors wish to ever go again; yet sadly we know that just is not in the cards. His malfunctioning GI tract necessitates a central IV line in his chest to allow his nutrition (TPN) and hydration (water) to reach his body. Sergio eats and drinks nothing by mouth. Never has, but even if he wanted to, he couldn't, his stomach is just a lump in his abdomen. It does not function. This very same GI tract continues to dump bacteria into his bloodstream and infects his line, bringing him to the point he reached in October. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy8fr1iRfclgD_IGR5oiJ_xjeG0W7N-Dw76iE0CUArd_FJk5YeKvXHGDgFebx-ZCmKqFYNdEfsSTJf2OCj-BoykiAg7T4-k5pbC7oAZnGDKdGJ4-ZDSvOcccvIar3LwGoPCi_PXuzUD1A/s1600/IMG_0650.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjy8fr1iRfclgD_IGR5oiJ_xjeG0W7N-Dw76iE0CUArd_FJk5YeKvXHGDgFebx-ZCmKqFYNdEfsSTJf2OCj-BoykiAg7T4-k5pbC7oAZnGDKdGJ4-ZDSvOcccvIar3LwGoPCi_PXuzUD1A/s200/IMG_0650.JPG" width="200" /></a></div>
But, the fact remains, as stated by a doctor who rarely shows his stress outwardly: Sergio was every PICU doctor's worse nightmare: Septic shock from a gram negative bacteria that was unresponsive to blood pressure medications. Yet, he is thriving once again. Sergio has returned to the same little man we knew before that brush with Heaven. He goes to school, gets in trouble all day long and gives out kisses to anyone that asks for them. That's the miracle. God and medicine combined yet again to bring my sweet boy home to continue to bless us with his spunky attitude. This is not lost on me for one moment and each time he runs a fever now, we will be profoundly scared of the subsequent course of events. We don't have a cure, this is life for my baby boy, but he's happy, loving and thriving when he's not sick and that's all I ask for.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9_8l6t9BBnXUz3bROsRkL17-tnSJ_RlpJx4mVHif5Hq6ZbRopmtehMXHWBSFa0BICgyP2kZwq6lWLOBdqu9394-B9vD0JHaqFpCRLfPCuBCxZwzSF4GJUbuLaVj1lG3uWQbGrkb4sixQ/s1600/IMG_0205.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9_8l6t9BBnXUz3bROsRkL17-tnSJ_RlpJx4mVHif5Hq6ZbRopmtehMXHWBSFa0BICgyP2kZwq6lWLOBdqu9394-B9vD0JHaqFpCRLfPCuBCxZwzSF4GJUbuLaVj1lG3uWQbGrkb4sixQ/s200/IMG_0205.JPG" width="200" /></a><b><span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: large;">Marriela: </span></span></b> Oh my, what a year my sweet girl has had! From a little girl who had to be restrained regularly in school to prevent harm to herself, to a young lady who has had only one "bad" day this entire school year thus far. That "bad" day, simple required a 2 minute phone call home to me and she went on to have a wonderful remaining day. She is learning. She is growing. She is maturing. I see hope for her in the future <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlCTQUjU5pIc_M0uWoM2kfrF1bsUsKCg4QPVeGnIxxYiwDrtstJWeRJZzFoerkM9HnnE-UvJCa28oHtuf2vlq8i2naKgwlP2Oi8h93kKh-zS14hx2qRgMBBaisYc9EoMonXJoyI54sZKs/s1600/IMG_0676.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlCTQUjU5pIc_M0uWoM2kfrF1bsUsKCg4QPVeGnIxxYiwDrtstJWeRJZzFoerkM9HnnE-UvJCa28oHtuf2vlq8i2naKgwlP2Oi8h93kKh-zS14hx2qRgMBBaisYc9EoMonXJoyI54sZKs/s200/IMG_0676.JPG" width="150" /></a>now, where before it was difficult to fathom. Marriela, will start a program similar to Annette's early next year, in which we will hire staff to help her learn how to acclimate and engage in all sorts of home and community based activities. She will be taught to communicate and handle money, and be a part of activities she was unable to participate in before. This is exciting and much needed for all of us. Dennis the Elf on our Shelf has rejoined us for the season and she is handling his presence so much better than before. Do we have our moments, of course. Have we learned and mastered techniques that bring her back to us before she goes so far to the dark side we need to use medications to bring her back, yes. But, we use those techniques so often now, she rarely gets anywhere near those points anymore. She engages and embraces new activities, transitions and life as a whole. What a blessing to watch her blossom! <br />
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<b><span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: large;">Joshua:</span></span></b> My always sweet, father loving, home body. He is a "daddy's" boy 100%! First words when he wakes up, "Where's daddy?" Last words of the night, "I need a hug from daddy." Joshua has periods of <br />
great seizure control and times we find ourselves grabbing the rescue meds frequently. He doesn't seem to be affected by these changes at all. The miracle of Joshua is that he really doesn't see himself as any different before, during, or after seizing. He happily goes on, whether in an ambulance, home, hospital or school. Life is what it is and that's all there is to it. He loves his movies, his PS3 NCAA Football game and his WWE. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeBduf-Ou8yVRtVBW_vEcpE8uHpOBXxofUvgHUS6uABl2Om9xmIDdtbGE71-UAbyszCXdfOJeTcX7BMueMpVvOakycEVKKmMXAC2o9gXRgEfD4o5N335K_1rsx-uPqW8VXxZRDpXF0Rh4/s1600/IMG_5445.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjeBduf-Ou8yVRtVBW_vEcpE8uHpOBXxofUvgHUS6uABl2Om9xmIDdtbGE71-UAbyszCXdfOJeTcX7BMueMpVvOakycEVKKmMXAC2o9gXRgEfD4o5N335K_1rsx-uPqW8VXxZRDpXF0Rh4/s200/IMG_5445.JPG" width="200" /></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUnNl7jdUPwrnw0BWE5MoA__ZB8q-quiSO_NPRnWnMPbD2Ay83JMDR9XpDI_vpzo0txpRnJt-u6Du7YVLBX05IZBi-AgOkTJP0dm0USCnDYMl08m476LIBiiqkRw02-g2gfVqhRwluUpM/s1600/IMG_5622.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUnNl7jdUPwrnw0BWE5MoA__ZB8q-quiSO_NPRnWnMPbD2Ay83JMDR9XpDI_vpzo0txpRnJt-u6Du7YVLBX05IZBi-AgOkTJP0dm0USCnDYMl08m476LIBiiqkRw02-g2gfVqhRwluUpM/s200/IMG_5622.JPG" width="150" /></a>He loves family time and fires in the fireplace. He loves hot chocolate with ice cubes in it (actually, they all love "hot" chocolate as long as it's cold lol). We await word from our neurologist who is attending a two week conference in DC and learning about new technology to control seizures during sleep. But, know, that if nothing else is available and this is the best seizure control we ever have.. . Joshua is happy and that's all that matters. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEkHfQA2PstYhO8kI4lbhTMueMiVRtZWSVRdSAMuA8g1znitP64xdQP4j8u1ggVl6sBOiNBRsudZ095NKM8-4Fd5joq96Qm3R3aQlOXuk0MVCRQXaV0BK_g6C7JpDNh3jkv871XqTDemo/s1600/IMG_5521.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgEkHfQA2PstYhO8kI4lbhTMueMiVRtZWSVRdSAMuA8g1znitP64xdQP4j8u1ggVl6sBOiNBRsudZ095NKM8-4Fd5joq96Qm3R3aQlOXuk0MVCRQXaV0BK_g6C7JpDNh3jkv871XqTDemo/s200/IMG_5521.JPG" width="150" /></a><b><span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: large;">Cody:</span></span></b> My never stop moving, wears his heart on his sleeve, BJJ loving, sensory overload little man. He is such a loving, wonderful member of our family. His ability to "go with the flow" with all that goes on here is a testimony of God's ability to meet our needs. He knew Cody would need to be empathetic, self-soothing, introspective and yet highly personable and he ensured those characteristics were intrinsically part of my baby. Cody loves his siblings. He tells us he loves us all the time. He plays with Sergio. He rubs Marriela's <br />
back. He concedes defeat when challenged by any of his siblings over <br />
the tv, phones, gaming units. He just finds something else to do. He is challenged himself by unrelenting asthma that has sidelined him several times this winter. He missed his first ju-jistu tournament due to asthma and croup. Despite his disappointment, he moved past it and all was well. Our family is truly blessed with Cody's presence. <br />
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<b><span style="font-family: Georgia,"Times New Roman",serif;"><span style="font-size: large;">Annette:</span></span></b> Wow. . . she is the epitome of determination. She refuses to accept failure or even having to settle for less than her best on anything! After a long, painful, awful 5 week hospitalization due to a severe infection in her knee, my sweet girl had to learn to walk all over again. She had to use a wheelchair for weeks (something she sees as a slight to her abilities). She had to live at home for three weeks after her <br />
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hospitalization as I administered her IV antibiotics 3times a day. But, the night before her last dose, she had her bags packed and everything waiting at the front door for her trip home, her home, not ours. It was bitter sweet all over again. I loved having her near to see her and help her. She wasn't into it nearly as much as I was. She is an independent woman who has a life to lead away from us. We're brought into her life every day as she calls and shares EVERYTHING that happens, but it's via a phone call and on her terms. She comes over every weekend and she would be deeply offended if we took the kids somewhere without her. She's still a little girl, who's managed to figure out (with the support of her wonderful worker, Taralee), how to live the life of a grown up despite her cognitive and physical challenges. She is an inspiration to all that know and meet her. .. at least she should be. <br />
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Well, that's my update and though it may be long, my angles deserve recognition of their individuality and the miracles each and every one embody. <br />
<br />
Merry Christmas,<br />
Love, Renee <br />
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Curkganghttp://www.blogger.com/profile/12243471749464276626noreply@blogger.com0