Friday, August 29, 2014

Jack is Walking!!!

Little man Jack has started to walk. It is very exciting, especially since I had been told be the neurologist that it was unlikely he would ever roll over. He can do about 10 steps in a row and he does often drop down to crawl because it is faster. I am thrilled and so is his biggest cheerleader Julianna.

I have retired from my job. I am pretty happy about the decision. I will now have time to spend with the kids and a lot of time to devote to Jack's care. There are so many possibilities and it should be great.I am hoping he

Jack is going to be starting the Hagedorn Little Village School on September 4th. The school is for children with special needs. Jack will be going in the afternoons and his class is predominately for language. I went to the parent orientation last night. The program is for two year olds. Jack is 21 months old. He is allowed in the program because the age cutoff for school in this area is December 1st. Jack's birthday is November 28th. So he will be the youngest child in the program. He won't be adjusted two (when he was supposed to be born) until March. I am hoping he will be able to do it. He has been going to daycare so he is used to a routine, but this is a lot more academic.

Early Intervention is supposed to provide a bus for Jack. I am going to drive him there, but they are going to provide a bus to bring him home since Julianna and Jack are getting dismissed from school at the same time. Julianna's school is very close to our house and Jack's school is less than 10 minutes away in Seaford, NY.  I was contacted by the bus driver who told me that Jack might be on the bus for an hour and a half. I am freaking about this a bit. They are planning to drive him all over the county with the other kids before they drop him off. There will be a matron on the bus but I am worried about that length of time each day. I am trying to figure out how I can arrange to pick him up and still get home to get Julianna.

We have had a nice summer. We managed to get up to Pennsylvania a bunch of times. We had a lot of family and friends visiting. There will be a few more summer days to enjoy before we get back to the daily grind that fall will bring.

Monday, August 4, 2014


I haven't written on here in so long. Sorry about that, life has been crazy busy.

I decided to wait awhile before having Jack get a new implant to replace the one he lost. He was having so many problems with his lungs that I felt I was really taking too much of a chance. He will probably have the surgery some time in the fall. In his last surgery his oxygen saturation dropped to 72%. It took them awhile to get it back up and it was really scary for everyone involved.

Jack had his ear tubes replaced a week ago. I was nervous about the anesthesia but they assured me that it was only mask anesthesia. He did not need to be intubated. His oxygen saturation did drop but only into the high 80's. They were able to get it up rapidly with blow by oxygen.

We have been having some issues with the equipment for Jack's cochlear implant. There have been problems with the external microphone and the processor. I have not been thrilled with the customer service from Advanced Bionics. I am waiting to get into the audiologist so we can troubleshoot everything. It is tough when there is a problem in the summer since there are so many people on vacation. In the meantime we have been teaching Jack some sign language. There are a lot of people against teaching any sign language to small children with cochlear implants, but I feel I need to go with my gut and make sure he has some communication skills.

Jack is still not walking. He can take some steps when I hold his hands. His physical therapy assessment puts him at the 9 month level and below the first percentile.  He is now 20 months old, 16 adjusted. It is disheartening to read the assessments from each of the therapists. He is happy and I feel he is progressing, just very slowly. I can comfort myself by realizing that he has far surpassed what a number of doctors predicted for him. I was told he will never walk and would likely never roll over. He crawls with great speed. He is climbing. He pulls himself up. He does have a right side foot drop. We are not sure why. He might have had a stroke while he was being ventilated and he might have some cerebral palsy. In order to find out for sure he would need an MRI. If he has that they would have to remove the magnet from his cochlear implant. They can do that through his scalp, but I have decided to wait and see what happens. I realize that having a diagnosis won't change anything and the treatment will be pretty much the same no matter what is causing it. He has physical therapy twice a week. He also has a teacher for the deaf twice a week and speech therapy three times a week. I am hoping we can add some occupational therapy. Meanwhile we clap and cheer anytime he does something new. Julianna is his biggest fan. She cheers anytime he does anything and he laughs and smiles every time. I enjoy watching them together. It makes me realize how worthwhile this whole journey is.

I had Jack tested to see if he could go to a preschool near us for kids with special needs. He was accepted and will go in the afternoons. They will have a lot of therapy for him as well as speech therapists and audiologists on staff. I think it is such a great opportunity for him. The same school is also starting a preschool program for deaf children and he will be eligible to go there next fall for a full day program.

I am planning to retire soon so I can spend more time with Julianna and Jack. I want to do more things with them and working full time has made that impossible. I would also like to take Jack to water therapy and a Mommy and Me class so he can make more progress. Julianna is thrilled with the idea and she can't wait for me to be home with her more often.

We are having a good time and enjoying summer. We were lucky enough to have my sister Kate and her family at the lake. The cousins had a ball together. I will post pictures soon.

I will try not to wait so long to update again!