Thursday, May 30, 2013

Happy Little Jack - 6 Months Old!!

Jack is 6 months old. He is a happy little guy and a very easy baby. He really only cries if he is hungry or poopy. He is doing amazing and appears to be meeting many milestones for his adjusted age.

The early intervention people have completed all their evaluations but I have not gotten the results yet. They tested him for hearing and speech (this I know he failed), socialization and he had a physical therapy evaluation. He has to be at least 30% behind to get services in any one area and 25% behind in two or more areas to get more than one service. I know we will get the hearing and speech. I am hoping he will also get the physical therapy. He still sees the craniosacral therapist. She is also a physical therapist and has done amazing things for Jack.

When Jack was being evaluated by the early intervention specialists I mentioned the issues he had with his head. They looked at his head and said it looked pretty good. I showed them a picture of Jack's head before he started treatment and they were amazed. They said he looks like a different baby. He does. The improvement has been very dramatic. He has had similar results with the torticollis. I was told by a few doctors that Jack's torticollis was very severe. Now it is being described as mild. I think with more treatment it will be completely gone.

Jack has his pre-surgical testing tomorrow. I am hoping all goes well because I am very anxious for him to get his ear  tubes. He has been showing signs that his ears hurt him at times and I think it is from the fluid.

I have been back to work. My friend has been watching Jack. It has worked out really well and she has been able to take Jack o his appointments and I can meet them at the office while I am at lunch. He will start daycare on June 10th, but I wanted to work some days before that since I am running out of accrued time. I am going to take off for his surgery.

Jack still has to see a lot of specialists. We are seeing the pulmonologist less frequently and she took Jack off the apnea monitor. That is huge for us. I was really only using it at night at this point but it is great to be rid of it completely. It would often go off for no reason and it caused stress throughout the house. It is about ten times louder than a smoke detector. He still sees the gastroenterologist, developmental pediatrician, plastic surgeon (for the cleft), ear nose and throat doctor, opthamologist  and the regular pediatrician. We still have to see a geneticist to make sure his issues are not due to any type of genetic syndrome. That one makes me nervous. I am hoping he does not have any type of genetic syndrome.

I am enjoying Jack and he is a lot of fun. I try not  to think about all the issues and just enjoy the moment. He has been eating cereal off a spoon and he spits it all over because he smiles and laughs so much while he is eating. I like to think he knows something I don't. He was close to written off so many times in the hospital. Really all odds were against him being here now. I know he is in pain from his ears and his neck. But, he doesn't care and he just chooses to be a happy guy.


                                                                  Julianna and Jack

Wednesday, May 15, 2013

Ear Tube Surgery Scheduled

Jack is going to have his ear tubes surgery on June, 4th. I think it will be a good luck day for him since it is my friend Vicky's birthday!!

They are going to do the tubes and then a sedated ABR. I am really hoping his hearing will improve with the tubes. However, if they do not I have already done a ton of research and I think the best cochlear implant surgeon is at NYU and I hope we will have that done pretty soon if he doesn't get improvement with his tubes.

We had craniosacral therapy today. That is really going great for Jack. He is now able to move his head from side to side with no difficulty. The shape of his head is also improving greatly. He seems to like it most of the time and it is a very gentle therapy.

We are still waiting for spring here as it is super chilly. Thanks for all the good thoughts and prayers!!

Friday, May 10, 2013

God Chooses A Mom For A Disabled Child ~ Erma Bombeck

This was written by Erma Bombeck. My Mother was a huge Erma Bombeck fan. Now that I am a Mother I read a lot of her stuff and I know why my Mom liked it so much. I think it is pretty great. It was published on Mother's Day in 1980.

God Chooses A Mom For A Disabled Child

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, Nearly 100,000 women will become mothers of handicapped children. 

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over the Earth selecting his instruments for propagation with great care and deliberation. 

As he observes, he instructs his angels to make notes in a giant ledger.

"Armstong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudlege, Carrie; twins; patron saint…give her Gerald. He’s used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She’s so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel"

"But has she patience?" Ask the angel.

"I don’t want her to have too much patience or she will drown in self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence. She’ll have to teach the child to live in her world and that’s not going to be easy."

"But, Lord, I don’t think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness"
The Angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ‘spoken word.’ She will never consider a ‘step’ ordinary. When her child says ‘Momma’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.."

"And what about her patron saint?" asks the angel, his pen poised in mid air.

God smiles. "A mirror will suffice."

Monday, May 6, 2013

ENT, School. ABR Results

We got the official results of Jack's ABR. They said he has profound hearing loss in his left ear and something called auditory neuropathy/dysynchrony in his right ear. This means his right ear has normal cochlear function, but for some reason sound is not being properly sent to his auditory nerve. In other words, he can't process sound in his right ear.

This is a rare diagnosis, and only about 2% of people with this diagnosis have it on only one side. This can happen in babies that had jaundice that was not properly treated. Jack did have jaundice, but he was under the photo therapy lights. In babies that have severe jaundice they should have an exchange blood transfusion. I do not know what Jack's bilirubin levels were and I am not sure how long they were elevated.

I am not certain that this diagnosis is accurate. It may be, but from what I am reading it is so rare that he would have it on only one side that I am wondering if they either missed it on his left side or that he doesn't actually have it on the right. In some cases babies with this condition have a spontaneous recovery. If they will have a spontaneous recovery it is usually in the first year of life and it generally would happen in babies that acquired this condition due to jaundice. The other thing is that there are a lot of people who say this diagnosis really can't be accurate if he still has fluid in his ears, and he does. So we will have to see if he shows this in further testing.

I took Jack to another ENT. He said he can do Jack's tubes. They prefer not to do it before 6 months of age. I am sure he will probably be over 6 months old by the time it is actually all set up. He also said he can do another ABR after the tubes are in and while Jack is still under general anesthesia. That would be great because I think it would be much more accurate. He also said he thinks Jack will be a good candidate for cochlear implants. Cochlear implants can help profound deafness as well as auditory neuropathy/dysynchrony. He wanted me to speak to the cochlear implant surgeon there at LIJ. I decided not to because I have already researched this and I have found that NYU has the premier program for infant cochlear implants. Obviously I didn't tell him that. I just said I wanted to wait to see what happens after the tubes are in.

I went to see the deaf infant program today. They have kids from birth until they would start kindergarten. We saw a little boy who is 5 years old and has bilateral cochlear implants. He became deaf as an infant after contacting meningitis. He received his implants at just over a year old.  His speech was beautiful and it seemed like his hearing was great. I was so happy to see him and I almost starting crying when I saw how normal and happy he was. He is starting kindergarten in the fall in a regular classroom. They had a lot of other kids there but the rest of them had regular hearing aids. It is likely Jack will get regular hearing aids but they do not think they will help him hear sound. They will just be to keep his sensory pathways open until he can get cochlear implants, providing he doesn't have any issues that will keep him from being a candidate for them.

They teach the kids to use spoken language. They no longer teach sign language. I told them I taught Julianna some signs when she was a baby and I was told that actually accelerates language development. They said that is true with a hearing baby and it would also be fine for Jack before he gets cochlear implants (if he does). However, they said they do not use sign for a baby with implants or   hearing aids. They said that it is a lot of work for them to learn to hear with these assistive devices and the signs are easier. They don't want them to take the easy way out. They want them to learn to hear and discriminate between different sounds.

I really liked all the people at the school. They said Jack would have about a half an hour a week at first. They said that is really them teaching me how to interact with him. As he gets older he will spend more time there. They said that most of their kids leave the program to go to regular preschool and almost all of them are mainstreamed in kindergarten. They are generally at grade level then and a lot are ahead due to all the early intervention. This sounded very promising to me.

I told them I was still hoping for a miracle that he will be able to hear when he gets his tubes. I realize that it is unlikely and I told them I would like to call them up and apologize for wasting their time. They said they wouldn't be upset about wasted time and they would be thrilled if that happened.

So right now we are waiting on scheduling the tubes. We couldn't do it right now anyway because Jack has a cold that is causing him to have some difficulty breathing. They would not let him have general anesthesia with it. He seems to be doing better today but he was having a really bad time on Friday and Saturday.

He loves to smile and laugh and everyone says he is the cutest boy ever. I agree!!