Monday, April 22, 2013

Early Intervention

We had our first appointment with Nassau County Early Intervention today. Jack would automatically qualify for services since he was born at 26 weeks but he qualifies a second time because of his hearing loss and again because of his cleft palate. The woman in charge of our case was very nice and knowledgeable. They will examine Jack and see if he has any delays or any issues that will require help. I know he will need help with hearing and I am pretty sure he will need physical therapy for his torticollis. She also said he will get speech therapy right away. Seems early to me but then again he hasn't said a word since he has been home so maybe speech therapy will help him.

They asked if I wanted to wait to get Jack hearing aids in case the tubes help his hearing. I do not want to wait. They say babies with hearing loss should have hearing aids by 3 months and Jack is almost 5 months. If he gets any hearing back after tubes I am sure they can adjust the hearing aids for him. I am worried that he might have severe communication delays if we wait too long. I talk to him all the time and it would be nice if he could hear.

I am hoping the ENT will agree to put tubes in for Jack but I know they may not want to do it yet. Jack may not be a great risk for the general anesthesia. He is small and his lungs are not in perfect shape. They may say we have to wait. I really would rather not wait but I do not want to put him under general anesthesia if he might have problems with that. I hate the idea of waiting because I am really hoping that his hearing will improve when he no longer has fluid in his middle ear. However, everyone I speak to about this is discouraging. They do not think his hearing will improve much even with the tubes in his ears. As his Mom I reserve the right to hold out hope and try not to be negative, but I am also trying to be realistic.

I am finding that there is a lack of knowledge about the cleft palate. Even the woman from early intervention said she had never seen a cleft palate where there was not a cleft lip. This is called isolated cleft palate and it actually accounts for 30% of all clefts. I am getting different information from everyone I go to and it is getting pretty frustrating. I am hoping to get into the cleft palate team, but it takes a long time to get an appointment with them.

For now we are continuing with tons of doctors appointments. Jack doesn't seem to mind. He is happy and smiles all the time.

Friday, April 19, 2013

Weight Check

Every child begins the world again.
~Henry David Thoreau

Jack saw the pediatrician again yesterday. Jack was weighed and is 10 pounds, 10 ounces. He was there two weeks ago and was 9 pounds. The doctor said it was almost impossible for him to have gained that much in two weeks. His last weigh in was obviously inaccurate. Not accurate and caused a lot of stress and worry for no reason. I realize now that I can not listen to everything the doctors say.

I saw a different doctor in the practice. When he looked at the chart and saw that the NICU missed the cleft palate he told me a story about another patient ( no names). A child was born and spent about a week in the NICU. She was discharged and the family was going to bring her for an exam the next day. Early in the morning the mother called and frantically asked if it was possible for a child to grow another thumb overnight.  It turns out the baby had two thumbs on one hand and the NICU missed it all week. Amazing.

I asked him for another ENT referral. I just didn't like the other ENT. He seemed dismissive and really didn't answer many of my questions. I have had numerous issues with certain doctors over the years and now I know I have to listen to my gut feeling. I don't like this guy. I need to move on to someone I do like. I liked most of the doctors. I liked the pulmonologist, cardiologist, GI guy, plastic surgeon, craniosacral therapist and every doctor in the pediatric practice we go to, but this ENT gave me a creepy feeling.

I didn't really like my OB when I was pregnant with Julianna. He too was dismissive and laughed at my concerns. Over and over I had very real concerns and he kept blowing me off. In the end I was in critical condition and had all the things I was concerned about. I am so lucky Julianna and I are both still here. The moral of that story is, if the doctor (or anyone really) gives you a bad gut feeling, run. Listen to your instinct at all times. Every time I did not I was very sorry later.

My pediatrician gave me the name of another ENT. This practice is very closely associated with the hearing center at LIJ. That will be good because we are also working with the hearing center. We have an appointment for April 29th. I am hoping they will want to put tubes in Jack's ears but I really want to hear what they think of the whole situation.

We also had another appointment with the craniosacral therapist. Jack really likes that treatment. He is very relaxed during it and sleeps much better after the treatments. She is doing a lot of work on his neck and it seems to be helping him. I like her a lot and we are definitely going to keep going there.

Things are going pretty well. Jack is really an eating machine. He is a happy cute little guy. Julianna and I are having a great time enjoying him.

Tuesday, April 16, 2013

Hearing Test

Jack had his hearing test yesterday. It was at Long Island Jewish Hearing and Speech Center. The first thing she did was a typanogram. That is to check if he has fluid in the ears. He failed. I was thrilled. I was never so happy to hear about a failed test. Maybe the fluid in his ears can explain the poor hearing.

She went on to do the auditory brainstem response test. She had to put electrodes on his forehead and just behind each ear. Then she put a probe in his right ear to test it. This test took forever. She was getting information on a computer. I could see it but it didn't mean that much to me. She had a great poker face, I couldn't read her at all. The whole test too about an hour and a half. Jack slept through the whole thing.

After it all she spoke to me about the results. He had no response in his left ear. Nothing. In his right ear he has severe hearing loss. She said that the fluid could impact the test but she didn't think it could impact it enough to cause such severe hearing loss. She wants to fit him with hearing aids as soon as possible. I asked her if the hearing aids will help him in the ear with no response and she said they do it just to keep the sensory pathways open. She said they will do all kinds of tests in the future to see if he will be a candidate for a cochlear implant. If he is they can do it when he is about one, sometimes sooner.

She wants to test him again next week. When I asked her why she said she doesn't like to make a diagnosis based on one test. She also said he needs tubes in his ears to try to get rid of the fluid. I don't understand why they want to test him again before he gets the tubes but of course I will bring him.

I am meeting with early intervention on Monday. Jack would get early intervention just because he was born at 26 weeks but he will get additional help for hearing loss. He needs to get help as soon as possible or his ability to communicate may never develop.

Obviously this is tough to deal with but I am really not that surprised. I was hoping that somehow he would pass. I am still holding out hope that he will have better hearing when the fluid is removed. I realize that it is very unlikely that it would be normal, but I am hopeful he will have at least something in his left ear so he can be helped by a hearing aid. In my googling frenzy I have found some obscure cases where the hearing was normal or close to normal after the fluid was removed, even though the tests showed a baby was profoundly deaf. So as unlikely as it is there is a shred of possibility, however I am facing reality and moving forward with getting him hearing aids as soon as possible.

Jack getting his ABR. 

Saturday, April 13, 2013

Penguin Cold Caps.... Do They Really Work?

I am going back to the Penguin Cold Caps for a bit. I get a lot of calls asking me about the caps. Someone will know someone who is about to do chemo and they tell them about me using the caps and then ask if I would speak to their friend. This happens all the time. I am happy to speak to anyone about the Penguin Cold Caps. If you have any questions you can always contact me through the comment section here.

I also had a doctor tell me recently that the cold caps don't work. I told him that I personally used the caps through my chemo and I kept all my hair. Despite me telling him about my experience he still insisted that they don't work. Another person told me that her doctor told her that the cold caps would stop the blood flow to her brain. This is ridiculous. If the blood flow to your brain stopped you would immediately die. People have also told me that doctors have told them that they would be more likely to have a cancer recurrence if they used the cold caps. There is no study to even suggest this and if you ask that same doctor why that would happen they would have no answer.

A friend of mine is a breast cancer navigator. Her job is to help people with the task of setting up all the different doctors they will need through their breast cancer treatment. She has brought up the cold caps at her meetings and the doctors say they don't need to do it. It is not necessary.

Why are doctors against this? My feeling on it  is that they don't like change and that they only want to deal with things in their particular area of expertise. The breast surgeon will rarely discuss the chemo, the plastic surgeon is more concerned with the reconstruction than the disease itself, oncologists are resistant to discussions about preserving fertility and onward. They don't think keeping hair is important and they don't want to deal with it.

There are other things they won't discuss. A certain percentage of people who use taxotere suffer from permanent baldness. I don't know if this would be the case with me and since I did not lose my hair I do not have to find out. I can say that my eyebrows are much thinner than they were and my eye lashes hardly came back at all. I also lost all my body hair and it has come back much thinner. I do not mind this part but it does make me think that it would have been the case on my head as well. Here is a link about taxotere and permanent baldness. There are tons of articles about it on the web and you can always google it.

If you are considering using the caps do your own research. There are no studies to show that there are any negative effects. Scalp cooling during chemotherapy has been used in Europe for many, many years. I can say that there are many positives. For me it was great to keep my hair for a lot of reasons. I think my then toddler daughter would have been scared to see me with no hair. I was scared to see me with no hair. I didn't look like a cancer patient. But, the biggest thing of all was that I had some control over what was going on. I could beat a big part of it by keeping my hair. That was huge to me.

I have a lot of posts on here about using the cold caps. There are pictures as well. The first chemo was December 7, 2009 and I posted about it and put pictures on there.

Good luck to anyone about to start on this journey. I have to say it went faster than I thought it would. While I still get check ups cancer is hardly the focus of my life. I am much to busy to think about it all that much!!

Friday, April 12, 2013

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!!

Friday, April 5, 2013


Jack and Juianna with the Easter Bunny.

Tierney with Jack the day we left Arkansas.

Jack getting his EKG.

Julianna and Jack on his 4 month birthday. (three weeks adjusted)

Our house just before Sandy.

Our house after Sandy with the new attic. This is before the chimney was added.
Inside the new attic. You can see why the chimney had to be raised.

Jack lying down. You can see here how his head is elongated.

My cousin Ruby at St. Marks in Venice, Italy. She was lighting a candle for Jack's health and happiness. All these good wishes have pulled us through.


Jack went to the pediatrician Wednesday. He gained 4 ounces but that is not as much as he should have gained. The gastroenterologist advised me to add 1 tablespoon of rice cereal to each 2 ounces of formula. The purpose of that is to thicken it so it is harder for him to spit it up. This is to combat his reflux. The problem with this is that the thick formula is very hard for him to suck through the nipple. The cleft palate people told me that his sucking through the nipple is the equivalent of an adult trying to suck through a straw with a large crack in it. She had told me that often cleft palate babies use more calories trying to eat than they are getting from the feed. This seems to be the case with Jack. He seems to be eating a lot even though it is hard for him and often frustrating for me. The pediatrician advised me to stop putting the cereal in his formula. I did that and he threw up everything he ate. Seriously, we went through eight outfits in one day. Thank God my cousin Eileen gave us some huge boxes of boy clothes her sons used. They are saving me right now!

Yesterday we went to the gastroenterologist. They weighed Jack and said he gained 11 ounces in 14 days. Huh?? I think the pediatrician had me in a different room than he did the first time and the scales are different.     The gastroenterologist only has one baby scale so I know it was the same one there. The gastroenterologist advised me to keep putting the cereal in his formula and he thinks he is doing fine. Relief!

In addition to all his other problems, Jack also has scaphocephaly. That is a head that appears flattened on the sides and somewhat elongated. This is common with babies that were premature and on ventilators because they have them lying on the side of their heads. The plastic surgeon I took Jack to for his cleft palate said it is concerning and needs to be watched. He said if it doesn't get better he will need carniofacial reconstruction. This freaks me out a lot. I was explaining all this to my sister Kathleen and she suggested that I try craniosacral therapy for Jack. Craniosacral therapists use gentle touch to manipulate the skull. I found a craniosacral therapist online that is near me and has extensive experience with pediatric patients. She is also a physical therapist. I called her and she said she really thinks she can help Jack with his head and also with his palate. Obviously she can't get the muscle in his soft palate to grow together, but she thinks she can do some things for his hard palate. That was really encouraging to hear. We are going on Wednesday. Of course it is not covered by my insurance because it is an alternative treatment, but if I we can avoid such an invasive surgery for Jack it will be worth any amount of money.

I am taking Jack to different types of doctors every day and we have a lot more to go. In the evenings I take Julianna to her activities. She has swimming on Monday, violin on Tuesday, ice skating on Wednesday, karate on Friday, reading and arts and crafts on Saturday and soccer on Sunday. In a few weeks t-ball starts and that will be two days a week, either Tuesday, Thursday or Saturday depending on the game schedule. Jack sleeps in the car seat and seems to have no problem coming along for the activities.

To top off all the chaos in this house we are finally getting the damage from hurricane Sandy fixed. I am thrilled about that because I have to run up stairs and change the buckets every time it rains. I also have a terrible storage problem in my house because I have no attic, no garage and no basement. We were storing things in boxes in the shed outside, but everything that was in there was lost when the Sandy water came. It was 3 - 4 feet high in my yard. So my solution to this problem was to build an attic. We lost the roof anyway, so why not?

The framer came and ripped everything off the house and had it finished in two days. We now have an attic that is seven feet high in the middle. We had to rip every piece of sheet rock and insulation out of the upstairs so it is now all studs. Eventually it will be nice and new. We are not going to rent anymore since I need the room. I know this will be great when it is finished but right now it is an added stress to an already stressful situation, I was hoping to get it all finished before Jack came home. It didn't happen because there were no contractors available. The guy I got lost all his trucks in the storm so he took a long time to be ready.

All in all we are doing ok, Thanks to everyone for the good wishes and prayers!!