Updates

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!

Surgery Over - Jack Is A Tough Little Guy

The surgery is over and we are home. Jack did great!!
I dropped Julianna off at my friend's house at 5 am. I then went to pick up my friend Cathy who was kind enough to accompany me to NYU for Jack's surgery. We parked at about 6:15 and made it to the sign in area by 6:30, just when we were supposed to be there.
All the paperwork went smoothly. Each doctor came in to speak to me before the procedure. I explained Jack's lung issues to the anesthesiologist. She said she would get some extra things set up in case he had any problems. Dr. Roland came in and he told us it should take about 2 1/2 hours in the operating room. He said the actual procedure would be about 45 minutes per ear.
Almost exactly 2 1/2 hours later Dr. Roland came out to speak to me. He said Jack did well, but he did have some breathing issues during the surgery. His oxygen saturation dropped significantly at one point and the anesthesiologist gave him an albuterol treatment. He responded positively to that and they were able to keep going. They did not have trouble extubating him.
I saw him in recovery pretty quickly. He had some blow by oxygen but he was still sleeping. He had a huge bandage on his head. When he starting waking up we gave him a small bottle of water, then diluted juice and finally formula. He was obviously in pain and they wanted to give him fentanyl. I asked if we could try him on tylenol first. They finally agreed and he fell asleep shortly after the tylenol.
We left NYU a little before 2 pm. I made it home in time for the school bus. Julianna was happy to see me and Jack but she was also pretty happy that my frind's college age daughter would be taking her to ice skating. She also took her to school in the morning and helped her with the kindergarten Christmas project, a milk carton and graham cracker gingerbread house. I was supposed to go with her but I could not because of Jack's surgery. They were allowed to bring another special person if a parent couldn't go. I was a little worried about not attending this, but she seemed to have a great time.
Jack had a bit of a restless night. He had significant bleeding and his bandage was soaked through by the morning. Dr. Roland told me to expect this. He also said Jack would have a lot of bloody drainage because he has the tubes in his ears and they allow more drainage out. I took the bandage off this morning (as directed) and I was amazed to see that the incision lines are barely noticeable. They are behind his ears and there are no sutures. Dr. Roland told me he was closing it all from behind and there would only be two absorbing stitches. I am not sure how they do this, but it is pretty amazing. His head does look a little swollen. His body does not look too swollen today, but it did yesterday. They gave him some steroids just before the surgery (for his lungs) and that made him pretty puffy.
I am glad the surgery is over. We will be going for activation in the beginning of January. Thanks for all the good thoughts, prayer and assistance!!!