Last week in review

Last week was yet another busy week in our house.
Monday
Monday was Gracie's IEP (Individualized Education Program). This was not her annual, which will be April 18th, rather a parent-requested meeting to discuss transitioning her to a classroom environment. For those not familiar with the process, in special education, once a child turns three, they move from the local infant program (which provides services from birth through age three - - in Gracie's case, Deaf & Hard of Hearing Services, OT, PT, Vision Services and Music Therapy) to the preschool program through the local school district. Due to her precarious health, Gracie has always been on "Home Hospital" services, which means that because she is too ill to attend a class, her services are all in our home - - very similar to the infant program in that respect. She receives three hours a week of preschool instruction, one hour of Deaf & Hard of Hearing Instruction, OT, PT, Speech twice a month (for assistive technology consultation - - not actually "speech"), audiological services once a month (this is new after Monday's IEP) and vision services twice a month. So, now we are talking about the transition process. This wasn't our first meeting... we tried this last spring and, in fact, wrote it exactly the same as what was written on Monday... and it was not accepted by the "powers that be" in the district. I asked why it worked this time and not previously... there wasn't a "real" answer.
What we proposed was for Gracie to keep her existing home & hospital program and have social visits to a Preschool setting where she could get used to being around other kids and the completely new setting (the lighting, the kids darting about, the things in the classroom, etc.) We also requested that she be able to visit the county Deaf & Hard of Hearing Preschool on a social basis so that she could be around other kids who use sign as their method of communication. While the district agreed to the former, it appears that the later is going to take some time due to the logistics of crossing over from a district program to a county program. We aren't convinced that either setting is the right class for her, but want her to have the opportunity to be in a classroom setting, see other kids signing (because she is only around adults - - the only kids she's ever seen signing are on her DVDs) and just be around other kids without losing her services. Typically, the district's standpoint is that if a child is healthy to make social visits, then they are healthy enough to attend school. Our contention is that Gracie's sensory issues and life experiences do not put her in the norm and they need to think outside the box. New environments (or even familiar environments that aren't home) can cause her a great deal of stress and anxiety... which can easily transcend into an actual illness. It's so important that she have an opportunity to slowly move into a classroom setting without losing other services - - if she lasts five minutes in the classroom at first, without physically shutting down, that will be a positive in our eyes. If we move too quickly, we could cause her enough stress that could make it almost impossible to get her back to that particular setting.
So... for now, we are trying the Special Day Class through the district, which happens to be at the elementary school just around the corner. We will make social visits as Gracie tolerates and do our best to build up her stamina so that we will have a better idea of how to proceed in her transition plan come the annual IEP in April. Coming to an agreement at that time, we are certain, is going to be a challenge.
Tuesday
Preston's 9 month check-up! He's 28 1/4 inches and 20 lbs, 11.5 oz. Right in the middle... just as he's been from the get-go. His feet and hands are huge, though, and if he grows into those, he's going to be a big boy! Clean bill of health... always a blessing.
Wednesday
Alice, Gracie's Deaf & Hard of Hearing teacher, brought yet another headband for us to try with Gracie's hearing aid. Gracie wasn't feeling super spiffy while she was here, but later that night she wore her aid for 58 straight minutes. She adjusted it a couple of times, moving the bone-conductor piece, but not once did she take it off or protest. Clearly, she is getting some sort of benefit from the aid, as Miss Gracie is absolutely NOT one to leave something on her head "just because."
Thursday
Gracie had an appointment with her Pulmonologist - - her lungs are on "auto pilot" right now - - to quote Dr. Perez!
This is, of course, great news... and not unexpected. Since infancy, Gracie has only had pneumonia one time... from a cold that turned ugly when her heart was in failure in summer of 2006. Her lungs couldn't do their job because her heart wasn't doing it's job. So... this was good news... and... we didn't even get a hand-slap for the snow day! Ha!
In the afternoon, when I went to put her hearing aid on, I discovered it wasn't working. The battery was changed twice... still, no vibration and a strange feedback/echoing sound. Four-letter words ran through my mind in a frenzy... as we are just finally having success and now it's out of commission. And, it's the end of the week with a three-day weekend approaching... so the likelihood of getting it fixed fast is slim to none. UGH.
Friday
Gracie had an appointment with her Opthamologist. We expected this one to be a quick appointment... but her Dr. wanted to dilate her eyes. Then, what should have been a 20-minute wait after the dilation turned into an hour and 20-minutes. Needless to say, the kids were not very happy and thus, neither were their parents!
What we learned is that Gracie would now benefit from glasses due to nearsightedness and an astigmatism... if she'll keep them on. She is incredibly visually social and attentive, so perhaps this will be a piece of cake. She tried on these cool frames from Solobambini that are soft and have no hinges or screws - - very cool. She looked SO stinkin' cute and she knew it! :-)
Those will be ordered next week... and we'll see how it goes (no pun intended!). I do feel strongly, though, that if she will tolerate only the glasses or the hearing aid and not both, the hearing aid will have to win for now. It's imperative that we keep her interested in listening... no matter what she is actually hearing... it's a skill she needs to practice all the time.