Jack Needs A Helmet

I took Jack to the neurosurgeon because his physical therapist said she is concerned that his torticollis is not responding to therapy as much as she had hoped. Jack's torticollis was so bad at first and it got much better right away with therapy. It wasn't completely better and he seems to continue to want to hold his head to his right side. Since he does this his head is developing an odd shape.

The neurosurgeon examined Jack. He said he is generally against helmets. He feels that a baby's head shape will get better by itself as the brain grows and they start spending more time on their stomach.
He also said that he felt Jack was an exception to this. He said Jack had as bad a case of torticollis and plagiocephaly (misshaped head) as he has seen. He said that since Jack is not yet rolling over and we don't know when he will, that it might not self correct. There is a small window of time where the skull is soft enough to correct the odd shape and we may miss it if we don't act soon.

He gave me a prescription for the helmet. I need to take him to an orthotist where they will make it for him. I am hoping they will figure out a way that it can work with the hearing aids and then the implants.

I feel so bad that Jack has to endure all these treatments. He is a happy guy and doesn't seem to complain much but it seems so unfair. I am happy that he is getting it all now and I remain hopeful that he will progress to the point that he doesn't need more than the cochlear implants by the time he goes to school.

Jack is ten months old now. He is still not able to roll over. I keep being assured by all the therapists that he does not have cerebral palsy. I remain unconvinced. I don't get any answers when I ask why he is not progressing. He has therapy four times a week and I do the exercises with him as much as possible yet he does not seem to be getting much better. I am looking for different specialists to take him to to see if I can get any new ideas.

Doctors and More Doctors.

Jack and I have been trecking all over to see all different types of doctors. On Monday we went into Manhattan to go to NYU for the feeding specialist. We got there pretty early. We went into the office and began to wait. This is the office for reconstructive plastic surgery. Sitting there and seeing some of these kids made me profoundly grateful.

There was a little girl who came in with her parents. She had what I would describe as "elf like" features, trach, feeding tube, and it appeared that the plastic surgeons were making ears for her. She was running around and playing. When I took Jack out to feed him she came over to see him. I asked her how old she was and she said she was 4. I asked her if she liked princesses and she told me she liked them all but Rapunzel was her favorite. Underneath what I can only describe as a truly shocking appearance is a little girl just like any other little girl. There were other kids there with horrific deformities. It made me realize how lucky we are and how unfair life can be. If you are ever feeling sorry for yourself I suggest going and sitting in a waiting room for reconstructive plastic surgery. You will leave there feeling like you won the lottery, because in a lot of ways you did.

The feeding specialist never made the appointment. I waited for an hour and a half. Finally the receptionist got in touch with her and she said she thought the appointment was for the next day. She also offered to reimburse me for gas and tolls, which makes me think she did know she actually missed the appointment, but I declined. I really don't think we need a feeding specialist at this point because Jack eats like a monster. However,  I did want to see this woman because she is the coordinator of the cleft palate team. We will have to go another time.

On Wednesday we went to the craniosacral therapist. She was very gentle with Jack and he slept through most of the appointment and it was an hour and a half. There were parts of it that I thought were a little hokey but I am trying to keep a very open mind. For instance, she was saying things like "Jack had a very traumatic experience in the NICU and we need to validate his feelings and have him release his stress and trauma". At certain times she said he will shudder a bit as he releases his trauma. He did do that numerous times, and I have never seen him do that at home, so who knows? She said she could help his breathing. He has  very loud nasal breathing. It has been that way since he got taken off the ventilator. She was rubbing his face and his temples. She said his bones are out of line and that is what is causing the nasal breathing. I don't know what she did, but all of a sudden he was breathing quietly. It was actually pretty amazing. She said that it might not stay that way and that he needs more treatment.

Jack also has torticollis, which is an abnormal position of the neck. It is likely from the weird positions he was in while being ventilated for so long. The craniosacral therapist is also a physical therapist and she feels she can help his torticollis too. We are going to go back next week and I am hoping that this will help him. If nothing else it relaxed him a lot and he slept great for the next few days.

Today we went to the pulmonologist. She feels like Jack is doing well and we can decrease his caffeine a bit more. She wants me to take him to someone to study his swallow to make sure his formula is not going anywhere it shouldn't due to the cleft palate. He does sometimes spit up and it comes out his nose, but I think a lot of babies do that. We will go back to the pulmonologist in two weeks.

All in all things are going well. Jack is an eating machine. He sleeps well most of the time. He sometimes has issues with gas and constipation and that causes him pain. I think the rice cereal adds to that but when we tried to stop it he vomited everything he ate. On Monday we have the ABR hearing test. I am very apprehensive about this test. I am hoping they will find that Jack's hearing issues are conductive rather than sensorineural, but I am not feeling super optimistic about it.

Thanks for all the good wishes!!