Tuesday, March 14, 2017

Jack Is Learning The English Language

Jack is finally taking off wit his cochlear implants. He is starting to speak in complete sentences. He knows how to put his Neptunes (off the ear implants) on by himself. We recently went to the audiologist for a mapping and to try him with the Naida implant processor. The Naida is a behind the ear (BTE) unit.

We had some problems with the Naidas falling off quite frequently. I was able to find a set of super hero covers with a leash that will make us losing the processors less likely. I also went to Michael's and bought some clear plastic cord so I could make a loop to hold them on his ears. They have ear hooks but they don't hold well, especially for an active 4 year old.

Jack recently had a word recognition test in school. He was in the sound booth. The audiologist would say a word (with her mouth covered so he can't read her lips) and Jack would point to a picture of what she said. For instance, she would say train and he would point to the picture of a train. Jack scored 80% on the test which is pretty good considering he is profoundly deaf without the implants. There are some limitations to the test. He is four and he doesn't have the greatest attention span so he may get things wrong simply because the picture of another object interests him more. Also there is no background noise in a sound booth. He has a great deal of difficulty hearing in situations where there is a lot of background noise.

Jack is taking swimming lessons, ice skating lessons and will soon be starting T-ball. I sign him up for these things but I am always worried that he won't be able to do it because of his hearing. Swimming is pretty good because it is one on one. He can wear his water proof implants for swimming but he doesn't hear so great there because it echos in the pool area. He does seem to enjoy it and even if he can't hear her he can follow her visual directions. With ice skating there were only two kids in the group and he seemed to do ok. The teacher turned out to be Julianna's figure skating coach. She knows Jack very well and it worked out fine. We are going to sign up for the next session. T-ball will start in April. He loves to throw the ball and hit with the bat. I know he will enjoy it but I am worried that he won't be able to hear from the outfield or with people yelling from the sidelines.

Jack doesn't know that he is any different from anyone else. Obviously I would never tell him he has any limitations. The other kids in his school all have hearing loss and wear similar equipment. At some point he will realize that he is a little different. I am not sure how that will go. For now I am just trying to do everything with him and hope for the best. He really is doing great. They wanted me to put him in balance therapy due to his balance issues from his vestibular damage. It turned out that it was very expensive and not covered so I put him in ice skating instead. Why not learn balance from real life experiences? He is as good if not better than the other kids his age who are doing it. He is so determined. He can't always express himself with words but he does with his actions. If he wants to do something he does it. I hope that stays with him.

                                                       Jack and Julianna riding their bikes.

                                                              Jack in his ice skating lesson.

                                     Jack with Julianna as she shows off her figure skating medals.

                  Jack trying his new toothbrush. Right after this he brushed the dog's teeth with it.

Sunday, October 9, 2016

Seven Years Since Cancer Sugery

Today marks seven years since I had my first cancer surgery. So much has happened since then. I am so grateful.

Back then I was given a lot of scary information. Some of it was true and they left a lot of other things out. It was a long road but I am happy to have gotten through it. I do have some pretty big side effects from the chemo and the surgeries. the worst is the peripheral neuropathy from the chemo drugs, It really has changed me from a super active person into a pretty inactive one. When I started the cancer journey I remember asking if I would be normal after all of it. They always answered that I would have a new normal. So, I guess this is  my new normal. It is not as great as my old normal but I am still extremely grateful.

It is harder for me to run after a 3 year old than it would have been. But not too many 51 year olds have a 3 year old anyway. After HELLP syndrome and cancer it was pretty unlikely I would ever have another baby. That was so sad to me. But, despite all the obstacles I did. Jack is my bonus baby. He brings us great happiness. He is a fighter and a survivor. I think he is destined to do great things.

Julianna was 1 when I got cancer. I remember thinking how she would be so alone if I died. No dad. no siblings. She wouldn't even remember how much she was loved. She is now 8. She is beautiful, smart, athletic and kind. I tell her everyday how much she is loved.

A lot of trying things have happened but a lot of great things have happened too. The good out shines the bad and we really have so much to be tankful for!!!

This picture was taken from our dock this summer.

Wednesday, September 7, 2016

New School Year!!!

Jack started preschool yesterday and Julianna started 3rd grade today. They are getting so big so fast.

Jack is getting a lot more words but I wouldn't really say that he is "talking" in any way that anyone other than I can understand. He is certainly hearing but I do not know how much he gets. When he is looking right at me he is actually understanding a lot. When he is not looking at he he hears, but I am not sure how much he understands. I was told that learning speech requires hearing and overhearing. Kids overhear so much of other people's conversations. Jack really can't overhear so it limits him a lot.

Jack's birthday is November 28th. In my school district the birthday cutoff is December 1st. If a child is 5 before December 1st they can start kindergarten that year. Jack will be 5 next year two days before the cutoff. I asked the special ed coordinator if I can hold him back and start him the next year. She said I can do that but then he will lose all his preschool services. He gets speech therapy, occupational therapy, physical therapy and services of a teacher of the deaf. There is no way he will be ready for kindergarten next year. I have the choice to send him to kindergarten at the deaf school. They have a kindergarten first grade combo class that is located in a public school. It is in East Islip which is almost an hour bus ride for Jack. If he goes to this kindergarten I can always have him repeat kindergarten in our home district. I know it is a year away but all the planning will have to be done in a few months because there are limited placements. All the placements require tons of meetings and evaluations and it can be an exhaustive process. I would guess all the decisions will have to be made by January.

When Julianna started kindergarten she was writing her name, reading many words and understanding some math. Her birthday is January 8th so she was one of the older kids in the class. It seems like Jack is years behind where Julianna was at this age and she was testing behind for a long time. Jack has progressed the most physically. He was testing in the 3rd percentile in overall physical assessment just over a year ago. Now he can do anything a child his age can do and more. He is very physical and he really likes sports. I am going to get him into some organized sports activities but he may have issues following directions.

Julianna is loving her new school. She enjoys sports and loves to read.

Here are some first day pictures.

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


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.