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,