Breath in, breath out, repeat. . .

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.

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!!

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

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. :-)

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!

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.  www.fortheloveofpeace.webs.com


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??

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.

Hugs,
Renee  

Time To Make A Wish. . .

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. 

One of our scariest stays yet.

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. 

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. 

Sergio LOVING the boat ride!

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. 

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. 

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. 

A little sister and Sergio time in the bed at the hotel.  

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. 

With Love,
Renee

Revelation. . .

* 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.  


 1/4/2014

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. 

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.

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.

 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? 
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. 

Season of Miracles

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.

Trayvon:  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. 

Sergio:  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.
   

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.

Marriela:  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

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!

Joshua:  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
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. 

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.

Cody:  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
back.  He concedes defeat when challenged by any of his siblings over
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.

Annette:  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

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.

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.

Merry Christmas,
Love, Renee 

 

The Ups and Downs. . .

Want to know what Sergio's favorite toy in the world is right now (well, actually 2 now, as one of his nurses found a matching - pink one)?  A plastic pumpkin, the kind you fill with candy on Halloween.  Yep, we've moved from naked, backless Mr. Potato Heads to pumpkins.  The problem is, these pumpkins, just like the "tater heads" seem to bring out the very worst in my son.  As most know, Sergio is a HUGE fan of water. . . I mean addicted to anything wet.  He's the kid you want in the desert when you're dying of dehydration, because there is no doubt, he'll find water.  And into the water source goes the pumpkins. . . yep, and then he tries to flush them.  Can you tell where they are floating regularly?  Despite the best intentions, using locks on the bathroom doors and even a gate at the top of the stairs, Sergio "watches" for his opportunities to access the never ending water source called a toilet.  Doesn't matter if it's filled with goods from a previous child who visited but wasn't nearly as happy to flush.  It doesn't matter if he KNOWS he's going to get in trouble, the very idea of getting splash time is worth every ounce of time-out he gets.  So we put the pumpkins Up and then when he cries and signs for the umpteenth time for his pumpkin, we take it Down.  And the process starts all over. 

If you have never ridden an elevator with Marriela, you're missing out on an unforgettable experience.  I mean, really, she has made virtually everyone who enters that small 3 walled box with a closing door smile.  Not because she's actually trying to be funny, but because her angst and her desire to ride the darn things compete with each other in a very humorous way!  She is scared to death of elevators (and strange bathrooms for that matter as well) BUT she has to ride everyone she sees. . . quite literally, has to. (she also HAS to visit every strange bathroom as well, but that's a whole other story).  She will happily usher everyone onto the elevator with a smile, then she will put you through the 20 question game to determine every location and floor each person will go, BUT, don't let that door linger open for a moment past the "ding" or she'll go into her panic mode and start pushing you and any other random stranger unfortunate enough to not have an unrealistic fear of elevators, off the darn thing.  Then she starts laughing and waits for it to return.  It's really quite fun when you have time to kill, not so much when you need to be some where (and anyone that knows me, knows I'm rarely on time. . . if only they knew why). 

And last, on the Up and Down theme. . . my discovery that I can NO longer tolerate any form of amusement part ride again.  Sigh.  The signs of aging are many, but this one was a real kicker for me, as I used to love going on them with my son.  I discovered this, though honestly was pretty darn sure BEFORE we took a ride that I already knew the subsequent outcome, a few weeks ago at the New York State Fair.  The first ride we enjoyed was a peaceful version of hand gliding without any of the worries associated with hand gliding.  Cody was on one side, Joshua on the other and as long as I kept my eyes closed tight, it was a nice ride.  Then Joshua chose the Big Dipper.  I watched it go for a few runs, and it looked sort of ok.  Cody was within the size range allowed so, being the ever so hip mom. . . we got in line.  I watched this thing, I wasn't really that worried.  I heard the screams, but figured they were just for fun.  We got on.  The safety harness (a very large thick, padded "U" shaped bar that smashed us all flat against the back of the seat) was secured.  At this moment I began to wonder why we needed such security, the ride looked rather benign to me.  I held my 7 year old, Cody's hand, and was promptly chastised and told that he wasn't scared so I didn't need to do that.  I assured him, that at this very moment I was the scared one and I DID need to hold a hand.  The bottom of the ride opened up and we were left dangling in the air, too late to stop now.  The ride is a pendulum that goes back and forth while also spinning those anchored to its seats.  I smiled, saw the smiles on my children's faces, looked at the smiles on those around me, then we went higher.  And higher, and my God almighty, we were up-freaking-side- down!!!!  Now, I'm terrified, looking to see if my small son had been ejected and realized why we needed such security systems in place.  I was never so happy to feel the breaks being applied to something in my life!  Upon leaving the ride, I tried to maintain my composure, realizing that 1. I had no feeling in my arms at all and 2. I was beyond dizzy.  As I made my way to the bench about 10 feet away, where Peter and the others were happily munching away on BBQ chicken kabobs, I was greeted by a young rider who promptly lost her previous last 3 days of meals about 5 feet from me.  I was praying she wasn't going to attempt to try and make it to the garbage can sitting immediately to my left, or we were going to have a tandem upchuck.  Thank God, she simply tossed it all onto the Midway, and with her dad's help, took a drink and got in line for another ride. 

So that's it for our ups and downs lately. 
Love to all,
Renee

Time flies!!!

Oh my, time sure does fly.  Summer is half over. 
I used to dread summer. . . the lack of structure created chaos for Marriela.  Our school district only does half day summer school and only for 6 of the 10 weeks off.  This created many issues and behavioral issues to contend with. 

Not this summer.  They are ALL doing great!  This summer has been relatively relaxing related to the kids.  My courses created unwanted stress, but they're over now.  We had an awesome trip out to Lake George and many trips to the local public pool. 

So today's blog is centered on the hour at hand.

Quotes from Marriela in the past 10 minutes:
"I'll send you cards when you die."
"When brown babies are born they turn peach when you turn the light on."
"When I grow up I'll treat you all to Ramen Noodles."
"Bo (our dog) go, go, go, you bother me... you can stay and watch me eat, it's ok."
"You'll live for a long long time, I won't let you die too soon."
"You had an awesome pregnant belly, good thing you stayed fat."
"You have old lady legs."
"I'll always be your baby."
"You can come live with me and my husband Tray, he'll give you lots of money and take you to the store." 

As you can see, there is never a shortage of things to "talk" about here. 

Joshua just got home from his program.  Unfortunately he had some seizures while out and this morning he had a big one that resulted him hurting his back on the bathroom sink.  I'll call neurology on Monday to see what else we can add. 

Cody had Jui- Jitsu this morning and did great.  He is so good at it! 

Tray went for a jog/walk today because he was "bored".  I'm not sure how much he actually jogs but that's ok.  I was proud of him for going at all!

Now we're all preparing to go Garage Saleing!!  WE LOVE Garage Sales!  :-) 

Enjoy your summer and I'll be back soon!

Love,
Renee


 

Overdue. . . like many of my children's library books!!

Well, the end of a school year is closing in.  End of the year activities are piling up.  Field trips, Mother/Son kickball games, Talent Show, Concerts, Special Olympics and state tests (many know that I am a vehemently against these tests and exempted my children from participating in them. . . another post for another time).   

We had, several significant ups and downs with Marriela this year in school, but she finished it out with an amazing ending.  She sang at her concert last night, as she always does, with such a love and gusto for music.  Several people stopped me on the way out to the car to say how much they love watching my daughter sing at these concerts.  She sways to the music throughout the entire concert, she engages in all hand gestures with great enthusiasm and her voice can be heard above all others (even with 3 grade levels on the stage at one time).  Today I filled out the form for the Talent Show.  She is singing again.  Last year it was the song by Hannah Montana, The Climb. . . I'll share it again someday.  It was incredible. This year she is signing an Olivia Holts (another Disney star) Had Me @ Hello.  It will once again be awesome no doubt. 

Joshua has been accepted into a new program that will provide community habilitation activities 4 days a week.  He is a bit skeptical and overwhelmed at the prospect of having to "go somewhere" 4 - 5 days a week!  We've told him this is the process for growing up and he needs to go out and do things beyond the front door of our house.  This is such a blessing, as we've never been able to allow Joshua to participate in any activities, as he requires a 1:1 adult with him at all times and has medications that need to be administered around the clock.  This program is just short enough to fit in between med times and provides a full time 1:1 person with him to engage and participate in fun activities out in the community with other youngsters much like himself. 

Tray has joined the Liverpool Modified Track Team.  He is doing the discus and shotput.  His endurance has improved 10 fold and though he may not be the fastest, he is successfully completing the entire 3 laps around the track with the other kids!  This is going from having virtually no endurance and almost passing out just walking an 1/8 of a mile this past winter.  Trayvon has also started some ADD medication and his grades have finally started to reflect his true abilities.  He went from a 54 in math to a 79!  This is a truly amazing transformation and I think there is even more room for improvement because he's much better at "staying on track" in the class, but his organization is severely lacking. . . therefore, we're going to work heavily on that this summer as well as writing skills and learning Spanish with some discs I bought.  His new heart is doing fantastic and despite continued elevated pressures, this just appears to be his norm and we'll need to just follow him a bit closer for issues. But he has had no episodes of rejection and has successfully weaned to the maintenance levels of is anti-rejection medications.  It's truly amazing to see pictures of him pre-transplant to now. . . what a difference!

Cody earned another stripe in Jui-Jitsu last night.  He is a natural and is "taking down" kids with 30-40 pounds on him.  He's a skinny little thing, but he is highly flexible and long, making him perfect for this sport.  He is going for his next belt on the 7th of June. . . Go Cody!!  Cody has also successfully worked incredibly hard this year on his writing and no long has a 504 plan in place to receive OT.  He has been getting OT since he was 18 months old and he's now 7 1/2 years.  That's wonderful.  He has also been an incredibly hard worker in his reading group (Cody has been in an RIT reading group since kindergarten) and is only 6 months behind his classmates.  He is now on grade level, and with some tutoring we're getting him this summer. . . should be on par with this peers in September.  Can you feel how proud I am?  This was my baby who wasn't suppose to have any issues and when it was clear we were having some in both reading and fine motor, I was heartbroken and totally frustrated.  I am now confident that much of it is him being a boy, highly imaginative, non-stop moving, and young for his grade (he turned 5 just as he started kindergarten).  So my little guy is going to the third grade doing better than ever before.  We are watching his writing skills closely as there continues to be some significant concerns about his "ability" to put thoughts into words vs. making the letters right.  So next year he'll get assessed throughout the year to see if he needs modifications or intervention in that area.  Otherwise, doing wonderful.

Sergio is moving up to first grade.   I had an epiphany the other night that he had not been in the hospital for his entire 6th year of life!  However, he started his 7th off with a bang. .. He had started running fevers on a Friday a few weeks ago so I took him right in to have blood work and check up done.  His ears were severely infected, phew, that was easy.  Started the oral antibiotics and some steroids for a bad asthma flare.  But he spiked a high temp that afternoon so the pediatrician decided we should do a shot of Rocephin as well to get the infection under control.  Pushed the med (he's had it dozens of times) and watched him break out in hives from head to toe.  So, now we have to push some Benadryl as well.  Oh, did I mention this was while Peter was out of town at his brothers in Florida.. . oh yeah.  It's now 4:45pm and I have to pick Trayvon up at 5:15 from track practice and I have Cody, Sergio (covered in hives), Marriela and Joshua all with me (each begging for a different "treat" for being good - since when have we started rewarding their good behavior with treats?  Oh yeah, like Forever Ago!  LOL)  I reassured them we'd all get "treats" for being good - yes, I didn't kill anyone so I deserved one too cause I was good.  Once Sergio was looking "better" from the Hives side of things, I bolted and was only 3 minutes late getting Tray.  This story is complicated by the fact Nettie is having some major issues with her knee (see story below).  Sooooooo, all is well UNTIL, 4:30 am on Sunday, and the pediatrician calls to tell me Sergio's blood cultures are growing yeast. . . Really??  So I assured her this was not an emergency - with that said- anyone else reading this if your son or daughter's blood cultures do grow yeast it most certainly IS an emergency for you!!  So don't do as I do, do as I say. . . go to the ER right away.  Did you see I rhymed that for you?? Anyways, I promised that if he looked any sicker I'd bring him right in.  In the mean time you need to see the story below to fill in the gaps from point A (phone call) to point B (ER trip).  Fast forward, Peter arrives home and he helps me with Nettie.  As he was standing there, he asks "Why is Sergio so sunburnt?"  What???!!!  He's been inside all day, he's not sunburnnnnn.. . oh my, he looked like a cooked lobster.  Took his temp, 103.8.  Off to the ER with his sister and his nurse who had literally just rolled through the door.  So I kissed Peter hello and goodbye in about a 10 minute span and off we went.  Short story, new antifungal on board, Sergio recovers wonderfully, gets to go home on Wednesday.   Mother's Day, I return from the hospital after staying up ALL night taking care of Nettie.  I always go straight back to see Sergio when we have no nurse (which we don't on Sundays until late afternoon) and change his diaper and take his temp and such.  He was happy and in full of it, and had a swollen and very red belly button with a hard lump underneath!  What!  No temp so decide to wait and see what becomes of our belly button issue.  Drew a line around it with a highly permanent marker (as 1 1/2 weeks later the damn stuff is still there) and I take all 5 kids to the bowling alley to a birthday party for one of Cody's classmates.  Peter went to stay with Nettie.  We had a great time and I refused to look under his shirt until we were all done playing and having fun bowling.  I got home and dang it if that red hadn't gone past the line I drew and his poor belly was harder and redder.  So off to the ER again, admitted again, start IV abx..  Discharged on Tuesday after a beautiful response to the meds and continued IV abx at home.  By Friday he was having profound diarrhea and his bottom was bleeding.  We stopped the antibiotic 2 full days short of finishing the round.  He has since recovered from a GI standpoint, but the last two days, he has been running higher than normal temps (100.2).  This is almost always indicative of something.  So as we move into the weekend we worry what this means (especially since we have a family reunion on Sunday!!).  Stay tuned. . .

Sigh, Nettie's story is a long and ugly one.  A simple arthroscopic surgery on her knee to smooth out some annoyingly rough cartilage and meniscus, resulted in a severe infection that lead to 2 more surgeries to wash out the infection, the placement of a PICC line to run IV antibiotics for 6 weeks and an almost month long hospitalization.  The Sunday that Sergio turned into a lobster was the day I was taking Nettie to the ER to have her knee looked at.  I had been watching it closely since Thursday when she started telling me how much it was hurting now, as it hadn't hurt at all following surgery.  I picked her up all day Saturday and she laid on the couch with an ice pack and pain meds on board, but clearly wasn't getting better and I knew as soon as Peter got home, she'd need to be seen.  Never guessing that I'd have to take both kids at the same time and have them admitted to two different parts of the hospital.  Nettie is 23 now and is no longer a pediatric case. It's so hard to have her on adult floors and not have the legal papers to have doctors have to call us instead of talking to her.  That's now one of my top things I need to work on!!  After 2 1/2 long weeks of severe, unrelenting pain, my sweet girl has finally turned the corner in that area and called this morning to say that she needed NO pain meds during the night and she was still pain free this morning.  This will change following her intensive therapies, but that's ok.  The fact that when she's resting her leg is no longer hurting gives my heart peace. I had to have a few maternal breakdowns with the old floor she was on, as well as her new floor.  Papers or no papers, doctors started calling me and giving me the plans of action and her pain was finally being addressed appropriately.  We are looking at her maybe coming home on the 30th.  We'll have to see how well she does between now and then. 

Well, that's it for now.  Peter and I doing a summer semester for 8 weeks.  He has a 3.8 average and I have a 4.0 thus far (in all fairness, Peter's professors grade him harder than mine do).   I had to write my final paper for one of my classes while bouncing from one room to another all day and that made for a very tired and loopy paper, but she said she loved it and gave me an A.  I think she was drinking some wine before reading it, but I'm not complaining at all!!  LOL 

I have another project I'm working on, but I'll do that blog in a few days.

Love to all,
Renee