Monday, October 8, 2012

Pre-School and medical updates

This is a much easier post to write now that we are a full month in. I was soooo worried how the boys would adjust to pre-school. I know crazy right, I mean me, worry? But this was honestly the first time they'd truly be away from me. We would do story time at the libraries, playdates and we signed up for several sessions of pre school classes during the last year but that was all with their mommy still with them.

At three years old Alex would still get upset when I would leave the room in our own home so I just couldn't imagine dropping him off at school and LEAVING and having him be okay, with people he didn't know. I seriously thought he'd cry the whole time I was gone, at least in the beginning. I was only a little comforted by the fact that the boys would at least have each other. I know they are three years old, but they are little for three--really, developmentally and physically. Even more so I was REALLY hesitant about sending them to school EVERY day. Granted, its only for two and a half hours a day but going from nothing to five days seemed like a lot. Their therapists (and friends and family) assured me they would do great but ofcourse I worried.

But I'm here to say they both amaze me as always. I worry for naught, as always! 


Maybe some day I'll learn to do less worrying but probably not. I seem to be a very slow learner :)

To help prepare them, I made sure to make a big (fun) deal out of what school would be like a good month before it even started. We brought home books from the library all about "first days of school" and we talked about the teachers in the books and used their own teachers names. We talked about all the crafts they would do, the new play ground, and all the toys. We scheduled not one but two different trips to their preschool room to play a week and two weeks before school actually started. I do think all of that helped some, (although maybe more for me).

There were tears that first day of drop off, yes but I'm also pretty sure they were mostly mine. Alex did cry as I expected but as I stood outside the door out of sight just to listen, he was comforted by his new teachers within just minutes, minutes, and he was quickly encouraged to play. I knew the teachers would be good, not strangers to new school angst (children or mothers) but I had no idea HOW good. They were patient and nurturing and have that really great talent of knowing exactly what to distract little nervous hearts with.

Oddly enough that first week or two, Alex would be the one to cry with every kiss good bye but Nicholas would hold it together until I would pick them up. It was the end of the day Nicholas' emotions would come out and alternate between "can't get enough of mommy" to full out "I'm so mad at you mommy" tantrums all the way home.

 Hey, he looks familiar....

Only a month in and I can't believe how much their little minds are learning. They are coming home with an explosion of new words, that just trickle out throughout the rest of the day. I hear little hums and choruses of newly learned songs. MY guys, the ones who could only say "momma" at age 2. Its amazing how much they have changed in the last few months. Now with preschool added, they are soaking up soooo much more, forming new relationships completely separate from their momma, gaining confidence in themselves. Ofcourse when I ask them what they did for school that day, they simply say "played" because ofcourse to them that's what they do.

The school they go to is an integrated pre-school which means half the class is made up of children who have some sort of special need and the other half are considered "typical." The ratio is what really won me over. A maximum of 12 kids to one special education teacher and THREE classroom assistants PLUS the physical and occupational therapists that work with Alex and speech therapists who work with both boys. They also have a weekly pool session, music class, and gym class every week oh and an accessible playground. I really can't imagine anything better for both boys!

Other updates: The boys recently visited with their pulmonary doctor. We are preparing for the cold/flu season and upping the boys nebulizer treatments to twice a day. Their lungs have a lot of scarring due to the ventilators they needed as infants so common respiratory stuff hits them pretty hard. We are told that most children with this type of lung damage grow enough healthy lung tissue by the time they are five years old and should put them on equal grounds when dealing with respiratory illness. Here's to that!! In the mean time, we can at least enjoy some extra cuddle time brought to you by Pulmicort :)

Alex was also seen by his orthopedic doctor, he gets x-rayed every 4-6 months to monitor his scoliosis and just a general check in. We have been having concerns regarding a very tight leg that has been getting more difficult to unbend and stretch. We talked about this at length because its now affecting his posture in the wheel chair. That one leg wants to bend and rub against his wheel. Alex can't feel it but it was causing lacerations when he was wearing shorts in the summer. We have him in his stander about an hour or so a day as recommended but ultimately he spends the better part of his day in a seated position either in his wheels or sitting/scooting on the floor so those muscles and tendons are getting tighter and shorter. There's some other medical stuff I don't quite understand but ultimately there is a surgery that can and may need to be done but its more extensive than I initially thought and involves not just cutting the tendon but also into the bone. As much as Alex dislikes it, we are now trying to increase his stander time, as well as advocating to get more physical therapy and aggressive stretching to see if we can make some in roads with this. This little man has had six surgeries in his first two years of life and honestly that seems like plenty, we'd like to leave it at that!

Lastly on the medical front we are still dealing with diagnoses like "failure to thrive." We are pushers of high protein/fat soy shakes and even pop tarts and oreos in favor of GI tubes--something that has been discussed continually at check ups. We tried the good oils and lots of soy butters and protein any way we could possibly offer it but they just weren't gaining and in fact were losing weight. The high fat diet is finally putting weight on. Both boys are up almost five pounds each since the summer time which is GREAT, now its just waiting to see if growth in height will also come. At almost three and a half years old Alex is 25 pounds and just 30 inches tall, and Nicholas is 25 pounds and 33 inches. They are easily mistaken for children much younger and are overwhelmingly dwarfed by their class mates. Luckily they have a whole boat load of cuteness on their side (unbiased report ofcourse).

Because of their severe prematurity no one expects them to be giants (their parents certainly are not) but the doctors are concerned that they have strayed farther away from their own growth curves in the last year. Alex has gone through all the testing with endocrinology and nothing glaringly abnormal was found. They did recommend growth hormone treatments but due to his severe scoliosis it is not something that his orthopedic doctor or his parents are willing to risk pursuing at this time.

Regardless of that terrible sounding diagnosis, I say they are most certainly thriving in all the ways that matter!!!

1 comment:

Sue Rissberger said...

Beautiful. You summed it up perfectly at the end by saying they are thriving in all things that matter :)