Where to start today marks the year of finding out that Heath has Chiari Malformation.
I endded the last blog by telling everyone how Heath got into the Hearing impaired program. Well school has started and he LOVES it. Every day we pull up to the driveway and he says "we here" :)
Still on the fence on if the surgery is worth the risks. So I asked him if we did more testing would that give us any more info. Heath's last MRI was in Nov and was to rule out a twisted neck. Now that we know he has Chiari I asked him to do the CSF MRI, and a full spine to look for a syrinx or teathered cord.
Ok how to start. I'm going to have to go back a few weeks so this may get long.
On March 11th I got a phone call from the Nero S nurse and she read me the Apnea results and they are not good. His sleep study was 6 weeks ago, so after that wait you think the news of what we are doing next would be better then "come back for a visit in 3 months"!!!!
We just had Heaths IFSP 6 month visit.
Communication Development: Communication 17 months, receptive skills 20-22 months, expressive skills at 18-20 months.
Congnitive Development: 23 months
Social-Emotional Development: 16 months
Adaptive Skills: 14 months
Gross motor skills: 19 months
Heath had a wonderful Christmas. He was into his gifts this year but still needed some help with the paper.
Heath is still seeing his PT and ST once a week and TOD every other week.
So Heath's MIR went ok. He was hungery but not upset to bad before it. We where the first appt. He ate at 10pm and I could have nursed him at 2am but he did not wake up. By 6 we where at the hospital and 6:30 all checked in, he had fun playing with the toys and hand foam in the wating room. The Dr arived at 7 and brought us back to start all the questions and talk about what to expect.