First I had Brady's last week, and it went pretty seamless and as expected (it's nice to have these!). He is anywhere from 50-75% intelligible to unknown listeners. They literally have him do reports and things to other teachers who don't know him throughout the year to get these stats, kinda neat. He is 75%+ intelligible to the rest of us known-listeners. His teacher said she only needs him to repeat or use context clues to figure out certain words on average once a day since she knows which letters he substitutes for other letters (like he still uses the g sound for j, etc). The only change to his IEP is the number and length of his therapy sessions. Since he's getting older and has better attention and focus, he'll get 3 days at 20 mins, instead of 5 days of 10 mins. He also has a group session, and the speech therapist works with him in the classroom during writing to help with spelling/sounds. Brady is at or above grade level for every subject, but struggles with spelling since when he sounds out sounds, he doesn't always make the correct sound and then can't figure out the letter, so that should improve with speech improvement, which is getting better each year for sure! He was suggested for summer school speech therapy again this year, which didn't surprise me - it's to help keep the skills he's learned, since he can regress on breaks.
*Interesting side note about Brady. The teacher told us that he befriended the little boy that was getting picked on, and now the boy who was being the bully has been upset and lashing out on Brady with mean comments. I guess Brady has shrugged him off and continued to play with everyone else and now the bully has been shunned. So, the school is going to have all the first graders participate in another anti-bullying program. We need to get all the kids to be friendly. Jason and I have discussed sponsoring a 'buddy bench' with the principal for the school as well. I have to admit, I'm very proud of Brady and his nice choices.
Jax's IEP was also rather smooth without many surprises. He's been doing great with the current IEP, so we replicated a lot for next year to keep him focused. He sits up front during presentations. He sits next to specific students during work time, typically on the end as well. He kept his medical pass to puke and stay in school if it's due to his tummy troubles instead of an actual illness. He has a big goal for speech, so I'm interested to see how that pans out. Sometimes I forget he has speech issues because we're always focused on Brady's so much, but if you listen to Jax talk with his peers, it always sort of stuns me how much he still has trouble.
One interesting new item for his IEP is that he'll be in a writing intervention session 3 days a week that will carry over into the classroom. It's a new program they're launching and Jax and another student in his grade will be in it, so it's nice he won't be alone. We're hoping this will really help him get a handle on his fine motor delay with writing and drawing.
Jax wrote such a nice story about our yearly trip to the lake with our friends, which a teacher had to type for him. He scored all 1st grade level on everything, except of course, the drawing and any writing he did himself. He couldn't look at what he drew or wrote and convey what he was trying to say with the pictures or words. He was sad to a kindergarten score, but we told him that is why we are doing extra intervention next year - I'm anxious to see if it helps.
Jax had his 6 month followup with the GI specialist and Feeding Team this week. It was great! His BMI is at 25% and his height and weight were both equal at 10% on the charts. He had a huge gain! (47" and 46 lbs) The GI doc and the team were all shocked. He is definitely eating better, but obviously still doesn't have the drive to eat, or eats a high volume, but he certainly drinks a lot of his protein drink. They are going to keep his tube-feeding the same and we will check in with weight/nutrition in August when we're back for the Endo-followup. They feel that the food is really FEEDING the hGH right now since he's finally having height-growth and muscle mass growth. If he continues on this path, we will start to pull portions of his tube-feeding back. It will be a long weaning-process, so I'm not going to get too excited or put any expectations on it. I will just bask in the fact that this kid is on the charts and super HEALTHY right now! Also finally going into the same pant-size as Brady! People are really starting to mix the boys up lately :)
Jax will no longer see the Feeding team now since he sees his own private therapist weekly and he doesn't require psychology-feeding services any further. So, he'll see the GI specialist and dietician going forward. The doc also mentioned going forward with the genetics test, which I wasn't sure if we'd do. He said he has one other little boy with RSS, and he also uses a g-tube and and hGH injections. Which is how you 'treat' the syndrome, so since we already do it, I wonder if we want to continue or not. I don't know, I will consider an appointment with a geneticist to at least just have the conversation.
These are all greats pieces of the story going forward for these boys!
|The boys are loving our tub again.|
|Just a simple time between the boys. They're sure lucky to grow up with their best friend!|
|Trying to get ready for summer swimming|
|Thought I'd share a text between Jay and I...|