Surgery
- Peanut developed another chronic ear & sinus infection and after a long 3 months, he finally had surgery. He got ear tubes, his adenoids removed (they were enlarged), an endoscopy, and lots of bloodwork.
- He did okay with the surgery but in order to coordinate with both GI & ENT doctors, it wasn't until 3:00 PM. BOOO. This resulted in no eating for the little guy for 24 HOURS total, and also an overtired kid (you can't nap if you're starving). Since his surgery was late in the day and he had a few things done they had to keep him over night. He slept fine at the hospital but was so just whipped the next day. He was gagging & puking from exhaustion. Once we got a night of sleep at home under his belt, he recovered quickly.
- His endoscopy still showed some irritation (evidence of reflux), but less than last year's, so the meds are still doing well.
- His bloodwork came back normal - no Celiac, no allergies, no anemia, etc, except part of his immune system numbers are lower than normal. We're seeing a doctor to understand this better.
- When Peanut turn 18 months adjusted we were quickly realizing that intead of catching up to his adjusted age, he was fairly steadily falling behind. He used to measure ahead of is adjusted age and he was acting more similar to much younger friends. Our main concerns were speech (no progress really at all - 2 words, and very few sounds or effort) and feeding (would NOT self feed, refused most foods).
- We had him evaluated and Early Intervention therapy was recommend in all areas. Since he is progressing most normally in his physical skills, we opted out of PT for now.
- We started speech & occupational therapy and have been for around 2 months now. (He is now 21 months adjusted.)
- Since recovering from surgery, he had made an insane amount of progress with his willingness to eat. He is eating all kinds of things he would not before. He also is throwing/refusing less. He will eat in his high chair without rage. This morning he ate 3/4 of a waffle with a FORK. This is just unheard of. I never thought he would progress so quickly. I think now that he finally doesn't have an infection he just feels so much better, and the OT helps us target things he can eat without gagging. (He does have difficult chewing & swallowing some foods, so we avoid those for now.)
- Unfortunately, he has made no progress in his speech. He hasn't' made any new sounds. He says "car" more often but that's really it. Sometimes he says "Gagi" (daddy) too. He still cannot say the mmm or d sounds. He doesn't babble much and is usually silent with occasional bursts of "car" and "gagigagi!". He imitates vehicle sounds "honk honk" and the fire truck siren, but only without moving his mouth, so it really isn't a speech sound.
- His ST thinks he has apraxia of speech, not a speech delay, because he isn't progressing normally. The apraxia would be a result of his brain damage at birth. We hope she is wrong as this can be very difficult to overcome.
- In the mean time we are being as diligent as we can about doing his daily exercises. We have to keep a log to keep track of them in addition to his medicines every day. It's a lot to remember.
- We are also working hard on sign language so that he can learn to communicate in some way. He has great receptive language and I hope he picks signing up quickly. Right now he signs "more" and "all done" and "eat" and is close to signing "milk". If he does have apraxia of speech, it could be a long, long time before he can communicate much with words.
- If he doesn't show progress within 2 months, we'll have to increase therapy to 2x/week. I hope we don't because right now, between therapy (right now 2x/week total) plus doctor appointments, we have little free time to do "kid stuff", like playing with friends.
- He sees the developmental pediatrician (NICU follow-up doctor) in April when he is 2 years old adjusted. Hopefully we'll have good news to report to him.
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