Wednesday, October 7, 2015

Jack Is Being Discharged From Physical Therapy

From small things, mama
Big things one day come
~ Bruce Springsteen



 Jack's physical therapist Debbie advised me today that she thought he was ready to be discharged from Physical therapy. She said he is not really at his exact age level but he is progressing so fast that she doesn't think he really needs her help anymore.

This amazes me. At one point I was told it was unlikely he would ever roll over let alone walk. He walks, jumps and runs now. He is so happy. I am so thankful to Debbie Fuggini and Jodie Collins for the amazing therapy they gave Jack.

I spent so much time worrying and taking him from appointment to appointment. The fact that it has paid off makes me so grateful and proud of him for all his hard work.

Jack is finally saying some words. He goes to the Deaf Infant Program for 7 sessions a week. They are amazing there and he is really starting to pick it up. He always tries to copy everything and he very happy to please the therapists. I love this program but he is going to age out of it at the end of December. I am currently going to see some programs. I only want him in an oral program not sign or total communication. It is hard to find even though we are in such a populated area,

They say it takes a village to raise a child. This is especially true with a child who has special needs. There are so many people responsible for Jack's success and I am so thankful.

Sunday, September 13, 2015

Pictures

Jack with Pop-Pop December 2013

       


Jack with Dr. Roland (his cochlear implant surgeon) spring 2015.
                             
       


 Jack riding in his cozy coupe spring 2015


  .


Julianna at her ice skating competition spring 2015
             


Jack getting his first haircut. Late summer 2015,



 Cousins at the lake house July 2015
                                           

Wednesday, September 9, 2015

Long Time, No Post

I haven't been writing on here lately but I decided to update.

First, on a sad note, we lost my Dad on January 2, 2015. He fought a long fight with Alzheimer's Disease. He will be greatly missed but I am happy that is suffering is over. I also think my Mom waited a long time for him and now they are together again.

Jack has been working hard with all his therapy. He got his second cochlear implant back and is making progress but it is very slow. He is walking, running and climbing. He is still way behind but I see him moving foward so I remain very hopeful despite his negative evaluations. He is happy and charms everyone. He is really not talking yet but he has a few words. He constatly babbles and reminds me of Latka from Taxi with his own little language.

Julianna is also thriving. She did all kids of things this summer, She waterskied, did trapeze, surfed in the ocean, swam and had all types of fun.

I have a lot of meetings for Jack as he begins the transition from Early Intervention to pre-school. The funding comes from different sources so it is a big deal to switch over. Early Intervention usually gives more services but my insurance is billed for them. When the school district takes over they do not bill the insurance.

Jack has been going to the Deaf Infant Program. They have been really great for him. The teachers are certified in deaf education as well as speech therapy. He gets two on one therapy as well as classes with other children who have cochlear implants. Some of the kids have amazing speech and you would never know they are deaf. Jack is not even close to that level. They say his hearing age is 9 months because that is when his left implant was activated. His speech and language are at about that level. I know he understands what I am saying most of the time.

Jack will only be able to stay in the Deaf Infant Program until December 31 of this year. He turns 3 at the end of November and the rule is that they can only stay in the program until December 21 of the year that they turn 3. They do not adjust for prematurity.

I went to see one of the schools for the deaf that is in my county. It is a pretty far drive and Jack would be on the bus for over an hour each way if he goes there. I was not happy with the school. It was very much like an institution. They were very Deaf culture and the whole campus was signing. They did have an auditory verbal class for kids with cochlear implants but they were still very much exposed to sign. There was also a kindergarten class with 10 kids. They were all bilaterally implanted with cochlear implants but they were all signing. When I asked why this was I was told that they had all failed the oral program for one reason or another. That upset me and I really don't want Jack to go there, I am hoping he will make a lot of progress in the next few months so I have more options.

Tomorrow I have a big meeting with the school district to decide what type of services Jack will get when he finishes with Early Intervention. I am hoping it goes well. We shall see......

Thursday, September 11, 2014

Cochlear Implant Working Again



We had an appointment with the audiologist today. She was able to trouble shoot Jack's equipment and get him hearing again. The microphone was not working properly. I had called Advanced Bionics numerous times and they sent me a new microphone and a new processor but I could not get it to work. The audiologist reprogrammed the processor. She also had to turn the program down in volume when we used the new microphone. The new microphone with the old program was causing Jack to cry and blink his eyes. It was much too loud. We are going to have to turn it up slowly again.

I met with his speech pathologist at the school after his audiology appointment. I showed her everything we are doing. I also showed his teacher how to put it back on him if it comes off (happens all the time) and how to turn it off and remove it before he gets on the bus. He can't wear it on the bus because the microphone is a choking hazard.

Jack started his physical therapy (at home) yesterday. It went ok, but he was very tired since it kept him from his early nap. It is hard to fit all the therapies, school and the naps in. He is not a happy boy when he misses his nap. Jack is a great sleeper. He goes to bed at about 6:30 and sleeps until 7:00. He usually takes a nap around 10:00.

I am retired now but I am busier than ever. I am hoping things settle down a bit once we get used to the new fall schedule.

Friday, September 5, 2014

School Started!



We enjoyed the last few weeks of summer. We were up in Pennsylvania for the weekend and had a nice time. There was one strange event. Jack's left ear, the one where he lost the implant, often bothers him. The incision behind his ear has a raised red spot. It has since he had the surgery to remove the implant. He has been seen by numerous doctors, and no one thought it was infected, it is just raised in one spot and redder there. He was rubbing the spot and I looked at it and saw something hanging out of it. I touched it and it came out completely. There was no resistance, There was also no blood, pus or any other fluid. It was his electrode. The doctor has said he would leave it in as a "place holder" but it came out on its own.

I emailed the doctor. He said it happens sometimes. It was not anchored to the implant since that was removed and it worked its way out. He said I should just put bacitracin on the spot. He also said we should schedule Jack's re-implantation soon since he no longer has the electrode in the cochlear. He didn't think it was a big deal, but I must admit it was pretty creepy. It is about three inches long. Super weird to have it just come out of his head like that. It did not seem to bother him at all though.

Both Jack and Julianna had their first day at school. Julianna started first grade on Tuesday and Jack started the Hagedorn Little Village School yesterday.

Julianna was a little sad that some of her friends are not in her class this year but she seemed excited to meet some new kids. Her teacher is only going to be her teacher for this week and then will be leaving on maternity leave. She will have a permanent substitute for the rest of the year. I am hoping it will be the same person all year. They are all still pretty little and need some consistency.

I took Jack to school yesterday. He has a very small back pack and he looked super cute with his little name tag. He can walk a few steps but I had to carry him. He went straight to the toys. His teacher seemed very nice. He is going to have eight kids in his class but they were not all there yesterday. The vast majority of the kids in his class are former preemies. I think Jack might have been born the latest at 26 weeks. He has a 23 weeker (with a twin in the other class), a 24 weeker and two 25 weekers. They all have different issues. The class is focusing on developmental delays (physical) but it is going to have a primary focus on language. Jack is the only deaf child in the class.

I spoke to Jack's speech therapist. She will be assisting him two times a week at school and one time a week at home. I asked her what her thoughts on teaching Jack sign language are. She said it should be avoided and we need to concentrate on the auditory verbal approach. Every speech pathologist and teacher of the deaf we have worked with has told me this. They feel he needs to hear and listen first. He can learn to sign at some point but it should not be first. I that they all have a tremendous amount of experience and they base their opinions on the current research. My problem is that so many of my family and friends disagree with this. They go on and on about how this is wrong and I am not doing the right thing for Jack. They all talk about how they did baby sign with their kids and it was the greatest thing ever. I agree. I did sign with Julianna. However, it is very different when the child is deaf and has cochlear implants. It is a very specific type of learning.

Jack is getting the bus home from school. I would pick him up but he and Julianna have the same dismissal time. They get out of school at 3:30. Jack's bus did not arrive at our house until after 5 pm. I also saw they they did not seem to have a proper car seat for Jack. They have the integrated restraint system which is like a built in booster seat. It has a 5 point restraint, but it has him just sitting on a pad on a regular bus seat. I looked it up and it does not seem to meet the NY state law for child restraint systems in buses. I an going to talk to the bus coordinator at the school today. I would prefer to drive him home because I don't think 90 minutes on a bus is good for him and I don't think it is safe. I am hoping to find some type of solution.

Jack woke up three times last night. He was screaming his head off. He would not let me cuddle him and was throwing himself down like how a child would during a tantrum. He has never done anything like this before. He did not have a temperature and did not seem like anything was hurting him. He would not relax to sleep with me. I just don't know why it happened. Finally, Smudge decided to sleep next to Jack's crib. After awhile Jack feel asleep looking at Smudge.

I do not know what upset Jack so much. . His teacher said he had a great first day and was very happy. It brings me back to the bus. Maybe because it was so long it upset him. Maybe they weren't nice to him. I just don't know. Of course the whole night terror thing could be a coincidence, but it seems unlikely.

We are going to try it all again today and see how it goes. I am hoping he has a good day and a good night.




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

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!