Heath's Journey 10/6/11

mujul79's picture

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" :)

His teachers have been so supportive with his limits both in the classroom and on the playground. While the school would not pay for a one on one aide in his IEP they are making it like he has one anyway. The room has 2 teachers, teacher aid who is 100% deaf, PT, ST and only 6 kids. So they are a total comunication classroom and all the kids and teachers sign and speek all day (LOL they have to so the one teacher can understand)and he is bonding with them as well. All of his class mates have hearing impairments and another little friend also has leg braces and a walker and Heath just thinks it is so cool that other kids are just like him.

July 14th ENT- checking his ears and they looked good, and talked about the sleep study some but he wanted us to go back to the Nero S.

Aug 8th Pedi- She has been so supportive of everything and said if all his visits and headaches cause him to miss school we could talk about a 504 plan.

Aug 15th Pedi-(this was a Peter and Tessa visit but we talked about Heath as well and his upcomming ABR)

Aug 16th ABR- He went to sleep with no problems and we had the rsults before he woke up. NORMAL HEARING in the 25dbl range. But the audiologist could not tell me what would have cured his hearing loss as it was sensory nero loss. And sent us back to ENT.

Aug 19th Nero S- After all that time waiting for an answer on the MRI that was taken back in May he was called to emergancy surgery and we did not get to see him!!!!

Aug 21st the Nero S- Did call me back we talked about my questions about how the hearing loss could have gotten better (no answer but said maybe ENT will be more helpful with that go back to him) He dose not think the Chiari is that bad and so while he is not ruling out surgery he wants to talk to the ENT more about the sleep apnea before he calls me back.

I never got a call back, I called weekly and heard nothing.

All of Heath's PT, TOD and ST endded the 2nd week in Aug. Now services are taking place in school.

We had no major events so we went on vacation for 2 weeks but the North East has other plans for us. Earth quake, hericaine, floods, tornadio, rain rain and more rain. We did also go to KY and take Simon to meet Bill's family. Bill's entire family where so supportive about Heath's needs.

Sept 7th should have been Heath's first day of school but some paper work went missing and so that day he was unable to go (other then for us going in to fix it) and his firs day was Sept 8th. He went in on the first day right with the teacher and in the afternoon when he saw me come and get me he said "I go on bus" LOL he did not want me to pick him up. It has been a few weeks now and this is what he tells me after my hug and kiss.

Here starts our visits during school hours(why he may need a 504)

Sept 13th Heating booth test, he did awesome for the first time in the booth without me. Heath heard at about 20dbl. Still no one can tell me why and the audiologist says I need ENT to order a CT.

Sept 16th I went and got my hair died with purple highlights for the Chiari Malformation walk.

Sept 17th Heath has 22 people show up and walk on Heath's Journey team, we raised almost $500 and walked a mile to help bring Chiari Malformation awarness. The walk took place that day in 47 diff locations i the US. Well over 300 showed up at our sigt.

Sept 20th was the open house at his school. He is loved by so many of the other kids in the class, Heath is not yet 3 but because the school year cut off is Dec 1st he still got to start in Sept. On top of only being 2 he is tinny for 2 and the girls in his class (ages 3 and 4) think of him as a cute baby. I hear rommors that he is also a so called mascot in the lunch room with the lunch ladies looking for him every day :)

Sept 22- Ultrasound of his abdomin went well and results where all clear. The big issue that day was finding out that the kids primary insurance was not working becasue David did not keep them on it!!

Sept 26th his Pedi called and we talked about the ultrasound (he will keep having them every 3/4 months) and just to keep up with what the next plan was as far as Nero and ENT was going. She did here at this point that Nero S had still not called me back from the 21st of Aug.

Sept 30th spent the day on the phone with many diff offices trying to get the insurance fixed before next weeks lined up visits.

Adding in here that Peter is having some Nero symptoms as well so on Oct 5th he was seen at the sleep center and we will be having a sleep study done on him as well. From now on in the blog your going to see Dates with a name now next to it as we add Peter into our journey.

Oct 3rd out Pedi good on FB to chat and tell me that she spent some time reading about Chiari over the internet and the stuff I sent her and she agrees that Heath is showing clear signs of EDS so we are going to be sent back to geneitcs. She also told me she was pushing Nero S to call me back and get us a visit with Nero for both boys soon.

Oct 4th I got a call from the Nero S manager and said she could fit both boys in for me next week and was sorry for all the issue I had with the office making me need the Pedi to help.

Oct 6th Heath ENT- today went well, ENT wants us to see Nero (tomarrow) before ordering the CT of the ear bones, he says he needs to do that and maybe we can get some answers about the hearing loss and then return. WE want this to have a better picture on if he is at risk for the hearing to go away all over. The Nero S never did call me back after Aug 21st but the ENT and him did talk last night and so today Heath had a scope done and everything ltooked normal, and the vocial cords where moving. The finding was that he has secretions that are thick at the back of the throat and a horse sounding voice (finding not caused my scope) So after we see the Nero we are looking like we are heaing back to Pulmonary.

Up next Nero visit in the Oct 12th, swallow study, testing for EDS, and CT. Heath is going to be 3 next month he has had apena that almost took him from me once and yet no one knows what to do to help him. Nero dose not want to do decompression because Chiari is only 6mm, ENT dose not want to do a toung reduction, becasue that is an adult surgery and typical not done in kids, Plumanary dose not want to do a trach, because he is sick but not so sick that he wants to make us have such a lifestyle change. But all agree that the apnea is causing him to have other health issues, effecting his behavior and devement also a risk to his hart!!!

Looking for answers maybe the Nero will be some help on the 12th.

Visits comming up:
Oct 11th Peter's eye exam
Oct 12th Peter and Heath's Nero visit
Oct 21st Peter's sleep study
Nov 7th Heath Pedi
Nov 10th Peter sleep results
Nov 14th Simon's well baby visit (his butt dimple at this time is not showing to be a sign of Chiari with his US being normla)
Nov 17th School confrance for Heath
Dec 15th Peter and Tessa's school confrance

And then someplace above another hearing test and swallow studie will take palce for Heath but I do not have dates yet.