Tuesday, December 17, 2013

Some Bumps In Jack's Road

Jack has started to feel a bit better and the bleeding from his ears has almost stopped. I did notice another problem though. His balance is completely off. He has been falling over to his left side. I had him sitting on the floor. He is really good at sitting unassisted, or at least he was. He can't even get enough balance to sit for a few seconds. He just tilts to the left and goes over. I had him in the bath ring, couldn't do it. In the exersaucer he sat in the seat bit had to hold on to an attached toy to keep from falling over.
I looked it up and it says that balance can be affected by the cochlear implant surgery, especially if both sides are implanted at once. I did call the doctor's office and I am waiting for a call back. We have a follow up appointment on Friday.
I am really hoping that this is just a temporary thing and that there was not some kind of damage done to his vestibular system. I am thinking that it could be that it is super swollen in there or that his ear tube on that side is clogged.
Jack is going through everything with his ears and at the same time his two front teeth are breaking through. I feel like this little guy can't catch a break. I have been staying home with him but I am hoping to go back to work tomorrow. We shall see.

Saturday, December 14, 2013

Jack Is Getting Through It

Jack is going through a tough time. His ears are draining tons of bloody drainage. It is freaking Julianna out. It occurred to me that she is not likely to follow in my career footsteps. LOL.
Dr. Roland told me that Jack's head may swell considerably. He said it may swell so much that his ears may stick out. Well, that is what is happening. His ears are sticking out about as far as they possibly can. That really started last night as the swelling progressed. He has also vomited a few times, but his appetite does not seem to have diminished.
He has been having trouble sleeping and it seems like he can't get comfortable. His only pain meds are tylenol and advil. He still does seem to be pretty smiley when he sees me or Julianna.
They told me that most kids go back to their regular activities after about a week. It has only been a few days but right now I can't see how this will all have cleared up in a few more days. Maybe, but it seems unlikely to me.
We have been stuck in the house for a few days and it is starting to get a bit old. It snowed today so it was unlikely we would go out and do much anyway. If he is feeling better tomorrow we will try to go do something, even if it is just to go to the grocery store.
I am hoping that his swelling will go down soon and he will start to feel better. We are supposed to have his cochlear implants activated the first week of January. I am hoping all the swelling will be gone by then. :)

Thursday, December 12, 2013

Surgery Over - Jack Is A Tough Little Guy

The surgery is over and we are home. Jack did great!!
I dropped Julianna off at my friend's house at 5 am. I then went to pick up my friend Cathy who was kind enough to accompany me to NYU for Jack's surgery. We parked at about 6:15 and made it to the sign in area by 6:30, just when we were supposed to be there.
All the paperwork went smoothly. Each doctor came in to speak to me before the procedure. I explained Jack's lung issues to the anesthesiologist. She said she would get some extra things set up in case he had any problems. Dr. Roland came in and he told us it should take about 2 1/2 hours in the operating room. He said the actual procedure would be about 45 minutes per ear.
Almost exactly 2 1/2 hours later Dr. Roland came out to speak to me. He said Jack did well, but he did have some breathing issues during the surgery. His oxygen saturation dropped significantly at one point and the anesthesiologist gave him an albuterol treatment. He responded positively to that and they were able to keep going. They did not have trouble extubating him.
I saw him in recovery pretty quickly. He had some blow by oxygen but he was still sleeping. He had a huge bandage on his head. When he starting waking up we gave him a small bottle of water, then diluted juice and finally formula. He was obviously in pain and they wanted to give him fentanyl. I asked if we could try him on tylenol first. They finally agreed and he fell asleep shortly after the tylenol.
We left NYU a little before 2 pm. I made it home in time for the school bus. Julianna was happy to see me and Jack but she was also pretty happy that my frind's college age daughter would be taking her to ice skating. She also took her to school in the morning and helped her with the kindergarten Christmas project, a milk carton and graham cracker gingerbread house. I was supposed to go with her but I could not because of Jack's surgery. They were allowed to bring another special person if a parent couldn't go. I was a little worried about not attending this, but she seemed to have a great time.
Jack had a bit of a restless night. He had significant bleeding and his bandage was soaked through by the morning. Dr. Roland told me to expect this. He also said Jack would have a lot of bloody drainage because he has the tubes in his ears and they allow more drainage out. I took the bandage off this morning (as directed) and I was amazed to see that the incision lines are barely noticeable. They are behind his ears and there are no sutures. Dr. Roland told me he was closing it all from behind and there would only be two absorbing stitches. I am not sure how they do this, but it is pretty amazing. His head does look a little swollen. His body does not look too swollen today, but it did yesterday. They gave him some steroids just before the surgery (for his lungs) and that made him pretty puffy.
I am glad the surgery is over. We will be going for activation in the beginning of January. Thanks for all the good thoughts, prayer and assistance!!!

Monday, December 9, 2013

Jack Passed His Pre-Surgical Testing

Jack passed! The doctor signed off and Jack is cleared for his surgery. I am pretty happy about it. I have not heard from NYU yet so I don't even know what time it is yet. It was supposed to be 8:30 am last time so I am thinking it should be about that time.

Julianna was examined as well. No one thought the node on her rib cage was significant. Her blood work came back and there were a few weird things there. First, it showed that she has had the Epstein Barr virus. It does not appear active and we are not sure when she had it. I suppose it could have been anytime since the symptoms are typical of any childhood upper respiratory infection. She also had a low blood glucose. It was 63, not profoundly low but not normal (normal low is 80). We had just come from breakfast with Santa so she had recently eaten. There was also something off with her BUN (blood urea nitrogen). She said it was insignificant but I didn't see the values. I am going to call Labcorp and get a copy of the results.

When the doctor was talking about the blood work she said everything that could suggest a lymphoma or leukemia is normal. Obviously that is great, but she didn't say too much about the values that were off. I am certainly going to investigate more. Julianna's teacher mentioned to me that she seemed a bit fatigued lately and wasn't up to par. I am hoping whatever it is will go away soon, but I will see someone else if it does not.

So we did have a productive visit and I am relieved that the news was pretty good.

One Surgery Date Cancelled, One Coming Up

Sorry I haven't posted in awhile. Things have been a bit crazy here. Jack's surgery was originally scheduled for 11/20. It was cancelled because he failed the presurgical testing.
We went to the pediatrician. She did not like the way his lungs sounded. Jack's lungs never sound great because he has bronchopulmonary displasia (BPD). She sent us to the pulmonologist who said he could not have the surgery because he was congested. He really wasn't that congested but no one will take a chance with Jack's lungs because of his history. He is now on inhaled steroids twice a day via nebulizer.
He is rescheduled for the surgery for Wednesday December 11. He has presurgical testing this afternoon. I am hoping the pediatrician clears him and we do not have to go to the pulmonologist.
Here is more information about some of Jack's lung issues.
What is BPD? Bronchopulmonary Dysplasia (BPD) is a lung disease that occurs most often in babies who were born severely premature—more than 10 weeks before their due date. Babies with BPD have inflammation and scarring in the lungs.
BPD usually is a complication in premature infants being treated for respiratory distress syndrome (RDS). RDS is a condition in which the baby's lungs are not developed enough to take in the air they need.
Babies with RDS must have oxygen and often need to be on a breathing machine to prevent brain damage and to save their lives. But the oxygen premature babies need can damage their lungs. When it must be delivered into the babies' lungs by a machine, it may be even more damaging. The infants whose lungs require this treatment are at risk for developing BPD.
Many infants with BPD recover and improve with time, achieving normal or near normal function.
Jack was on the ventilator in the NICU for a prolonged period of time. That caused his lungs to be damaged and scarred from the pressure. At one point the ventilator was not enough for him and he was put on an oscillator. The oscillator sprays oxygen into the baby's lungs and has less pressure. The oscillator saved his life. Luck was on our side because essentially the oscillator is it. At one point in his treatment his numbers were dropping even on the oscillator. They explained to me that they could maybe move him somewhere that has the technology for ECMO, which is essentially a heart lung machine.
ECMO (Extracorporeal Membrane Oxygenation) is a procedure that uses a machine to take over the work of the lungs and sometimes the heart. ECMO is used for babies, children and adults. It is a special way for a machine to help your child, while he or she is very sick. ECMO provides time for your child's body to rest and recover. You might hear your doctors, ECMO specialists, or nurses refer to this process as ECLS (Extracorporeal LifeSupport) or bypass, which is saying the same thing, just in a different way.
Let's take a moment to better understand each word in ECMO.
Extracorporeal means that the blood circulates outside of the body with the help of a machine. Membrane Oxygenation, referred to as the "artificial lungs," is a special part of the machine that puts oxygen into the blood and takes out carbon dioxide just like our lungs do.
We lucked out and Jack rallied with the oscillator, although it took some time. On Christmas Day last year Jack extubated himself and was able to breathe on his own. It was nothing short of a miracle and no one could believe it. He then went on high flow nasal oxygen and remained on that for a few months. He still had plenty of issues and stopped breathing countless times. He rallied each time.
These are the reasons why thay worry about Jack with the general anesthesia. They are worried that they will not be able to extubate him and he will not start breathing on his own. He had general anesthesia in June when he had his ear tubes placed, but it was a much shorter operation and a different type of anesthesia.
I am hoping that he will pass and be able to have the surgery because not hearing is really slowing his development. However, I am a nervous wreck about him having the general anesthesia.
Julianna will also be seeing the doctor today. She had a very enlarged lymph node and a cluster of accompanying enlarged nodes at the base of the left side of her neck. I took her to the doctor who didn't seem to think it was a big deal. She gave me a prescription for blood work but told me I could wait to see if it changed. She said if she gets a fever it would explain why it was there or if it went away not to worry about it. Well, it got smaller so I was not too worried about it. However, the other night I noticed she has a very enlarged lymph node at the base of her ribcage. It freaked me out and we went immediately for the blood work. Today we are following up with the pediatrician. They had told me last time if the nodes hurt it is usually nothing. They both hurt her when they are touched so I am hoping it is nothing. It is strange because she has no fever and they also cultured her throat, negative. She has no complaints of anything at all. I have spoken to other Moms about this and have heard numerous similar stories where it turned out to be nothing at all. Obviously I am hoping for the same outcome.
Other than all this medical stuff we have been busy. We had two Santa vistis in two days. On Saturday we had breakfast with Santa with Grandma and Pop-Pop and on Sunday we saw Santa agian at my work kid's Christmas party.
So, hoping all goes well later today. If so, Jack will be getting his surgery on Wednesday and I will have a sigh of relief about Julianna.

Friday, November 1, 2013

Pictures

 These are not in order but they are all pretty recent.

Jack doing tummy time. He is getting really good at pushing himself up.


Jack wearing his hearing aids.




Jack wearing his helmet.






Jack the pumpkin boy. He is sitting by himself without support.


         Julianna as Draculaura from Monster High.


Julianna and Jack on Halloween.

                                                           
            Pictures of our family.

                                                         
 Me with my babies.

                             
           With Grandma and Pop-Pop.


                                             
  Julianna with Uncle Rich at the Maker Faire.



Monday, October 21, 2013

Moving Along and Rolling Over!!

We are moving along and getting some dates set. Jack will have his surgery for bilateral cochlear implants on 11/20, pending insurance approval. They are changing a lot of the protocols and they said he might not even have to stay overnight. He is likely to be the first case since they go in age order with the youngest being first. They do this because of the fact that they can't eat prior to the anesthesia and the babies have the hardest time with that. I am happy we are moving along with it. If all goes well he should be hearing before Christmas.

Jack will get his helmet on Wednesday the 23rd. We went for the fitting last Friday. They put a socklike material shaped like a hat on his head. That material had sensors all over it. Then they used a type of gun that read all the sensors. All that data went to a computer and it made a 3-D model of his head. They will use that to make his helmet. I got to pick from a bunch of different patterns but I decided on basic blue.

Jack rolled over!! He finally did it! He went from front to back in therapy but without being touched. He has since done it a few times at home. I am very proud of him and relieved. He is seeing a Developmental Neurologist on Wednesday so I can get a better idea where he stands with everything, but I am thrilled that he finally rolled over.

Jack's hearing aids are not doing anything for him. I have not been putting them on him much because I am concerned that he will choke on them or swallow the battery. Button batteries are a huge big deal if a baby swallows them. If that should happen they usually require surgery to get them out and and caustic if they are left in. If he is not getting any benefit from the hearing aids I prefer not to chance any issues. I do sometimes put them in when he will be right in my field of vision, but never in the car and I am leery about it for daycare.

Jack is a very verbal baby. People always ask me why he coos and yells so much if he is deaf. I am told this will stop if he is not implanted. That is one of the reasons why it is important to get the cochlear implants so early. All the cooing and repetitive noises babies make are the building blocks to language. He needs to do this in order to learn to speak later. If I sit him on my lap and make certain noises he is able to copy them. When this first started happening I was sure they had made a mistake and he was not actually deaf. The teachers from the deaf school and the evaluators all told me that deaf babies do this. He sees how I am moving my mouth and copies that. They said that is one of the reasons they do universal newborn hearing screens now, because deaf babies fool us. They said that, before the screening, they would not know the babies were deaf until they failed to develop language at 3 or 4 years old. That is really late to find out that a baby is deaf. If you want the child to speak you need to find out early and start therapy right away.

Jack has physical therapy twice a week, speech therapy once a week and cranio-sacral therapy once a week. NYU told me they want him to have auditory therapy four times a week and the deaf infant program wants him to attend twice a week for 2 1/2 hours each time. I am having difficulty getting all these things done, getting to all the doctors appointments, getting to work and doing everything for Julianna. Our house is still under construction post hurricane Sandy. It is getting closer to completion. I am hoping it is finished soon. When it is I would like to hire a full time, driving nanny to take Jack to a lot of his appointments as well as get Julianna on and off the kindergarten bus. Right now I am getting by with luck, prayers and the help of great friends.

I went to get my hernia checked again and it is looking like I will need the surgery very soon. I am hoping I can coordinate it with Jack's surgery and we can recuperate at the same time. I hope it works!

We are busy but we are enjoying fall. We have gone to the pumpkin farm and apple picking. I took Julianna to the Halloween events at Sesame Place and she had a ball. She is still in ice skating, dancing, violin and arts and crafts.

I just passed the 4 year anniversary since my cancer surgery. I have only one more year that is considered pretty risky. We are super happy and life is good!!

Monday, September 30, 2013

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.

Tuesday, September 17, 2013

Hearing Aids, NYU, Dr. Citron



We finally got the hearing aids. We got them on Wednesday the 11th. He didn't seem to have any notable response to anything with them in. There is a lot to the care and testing of the hearing aids. I had a lesson on everything when we picked them up.

On Thursday and Friday last week we went to NYU. We had three appointments. Two of them were to test Jack's hearing in the booth. They put us in a sound proof booth and put a small ear phone like device in Jack's ears. Then they send sound through them to see if he responds. If they think he does they make a stuffed monkey light up and play the cymbols.

They felt he responded to certain sounds in his left ear at about 75 dB. He only responded at certain frequencies. Personally, I really didn't note him to be responding all that much.If he moved his head or turned at all they were saying he was responding. He is a pretty antsy guy so it is really hard to tell why he is moving. Hearing at 75 dB is still a pretty profound hearing loss and he still qualifies for cochlear implants, but it is a lot different than the results of the auditory brainstem response (ABR) tests that he had at LIJ.

The audiologist told me that his hearing may be a bit better than it was when he was previously tested. If that is the case, his hearing aids are programmed wrong. She said that they could be hurting his ears and they may need to be reprogrammed. So I took them off him. She asked me if I wanted Jack to have another ABR at NYU. I told her that I do. The ABR is objective and the behavioral booth is very subjective. I don't want to damage any residual hearing he may have by using hearing aids that are programmed wrong.

The next day he had the same test for his right ear. He was a little irritable and the test was coming out all over the place. His right ear has auditory neuropathy and that means he doen't process sound even if he hears it. He did not test well with that ear.

Jack was also evaluated by a speech therapist. She was listening to his babbling and counting the different types of sounds he makes. She told me his cry sounds immature and she thinks he may have some vocal cord damage. He will need to be evaluated for that. It seems like we hear bad news at all of these appointments and I find it pretty frustrating.

We go back to NYU this Thursday for two more appointments. I am going to try to take the train this time. It was pretty tough driving in there and I was forced to park in a garage costing $37. I think it might be cheaper and easier to take the train even though it will be rush hour. We will see.

On Sunday we had my Dad so Betty could go to a baby shower. He is getting pretty bad and it was hard dealing with him. Julianna was very helpful and she is pretty understanding about Pop-Pop's brain disease. It was nice to be able to give Betty a bit of a break.

I had an appointment with Dr. Marc Citron my medical oncologist. He took blood and sent me for a chest x-ray. He did an exam and said he thinks everything looks normal. He also told me that I am now in the time where I have the greatest risk of recurrence. Once this year passes my chance of recurrence will start dropping dramatically. It can be pretty stressful to think about so I try not to.

Julianna is enjoying school and her activities. She has violin, ice skating, dance and arts and crafts. I am trying to find a place for swimming lessons that is a little closer to home than our last place. Jack i s happy and is proud of his two new teeth. We are all enjoying fall and having a good time!


Thursday, September 5, 2013

Kindergarten, No Hearing Aids Yet, Pictures


Julianna started kindergarten on Tuesday!! It was a big day for both of us. She was excited and I was nervous and sad that she is growing up so quickly. My little 3 pound baby is with all the big kids now. She did say some of the kids said she looked like she was three and that made her sad. I told her to please remember that Uncle Rich was made fun of for being small and now he is the tallest person she knows. Kids can be mean. I hope she learns to let it all roll off.

Jack was supposed to get his hearing aids yesterday. I took the day off for the appointment. About two hours before the appointment they called me to say the hearing aids weren't in and I needed to reschedule the appointment. The lady there (LIJ) was pretty nasty as usual. After speaking to the supervisor I was able to get an evening appointment for next Wednesday. I hope it works out this time.

Here are some pictures:

Julianna ready for the first day of kindergarten.


Julianna getting on the bus. I followed in the car.

Jack at 9 months old. Super happy.

                                    View from our dock in PA. We are sorry to see summer end.




Monday, August 26, 2013

Genetic Testing Results


The results for Jack's genetic testing came back and everything was negative. He did not have any of the connexin mutations. There is also a mitochondrial mutation that can make people more susceptable to gentamicin induced hearing loss. Jack was negative for this as well.

Everyone was pretty sure the drug interaction between the gentamicin and lasix caused Jack's deafness. However, they did say there was the slightest chance he could have had one of these genetic issues. I am glad he does not have any of these genetic issues, but it makes me pretty mad that they did this to him.Anyone who googles these two drugs can see that they should never be given together. I would also understand if there was no other option but to give him these drugs to keep hime alive, but that was not the case. He got the gentamicin (an aminoglycoside antibiotic) for a "rule out". That means he didn't have an infection, but they gave it to him just in case it came back that he did. He did not, and he never did.

A lot of hospitals are moving away from using gentamicin, especially in the NICU population. Here is an interesting article about that subject.  http://exutero2.wordpress.com/2010/12/16/why-we-use-zosyn-instead-of-ampicillin-and-gentimicin-at-tulane-lakeside/
A lot of places say they are still using it. They say it is a good drug because it is cheap and it is broad spectrum. In Jack's case it is certainly not cheap. The cochlear implants and associated therapy for his lifetime will certainly be in the millions. The implants alone will be $250,000. That is just one surgery.

I am currently trying to work out the financial part of his implant surgery. They are saying the insurance will cover only 80% of it because they are out of network. There is not anyone in network who does this surgery so I am hoping they will pick up more of it since 20% of it will be over $50,000. The NICU had also applied him for medicaid. He was eligible for despite my income because he was under 1200 grams. I am now trying to find out if that is still in effect and if not if there is any way I can get him on it. I am hearing conflicting information, but there are certain disabilities where Medicaid/SSI eligibility is automatic (such as being born at under 1200 grams) and some people are telling me deafness is one of those and some say it is not. I am waiting to find out officially.

Jack had a CT scan today to check the anatomy of his inner ear and to check the thickness of his temporal bone. He is having all types of testing done to make sure he will be a candidate for the cochlear implant. He was a good sport for the test despite the fact that he couldn't have a bottle after midnight last night. We were at the hospital a bit after 6 and he had the test about 7:30. They gave him a short acting sedative so he was awake and eating shortly after.

Thursday, August 22, 2013

Hearing Aid Molds



Jack had an appointment yesterday for his hearing aid molds. It was at the LIJ Hearing and Speech Center. He was very cooperative. They put a silly putty like substance in his ear and then wait about 5 minutes for it to harden. They did this for each ear.

We also had to pick out the color of his hearing aids. I decided on a metallic blue and black. They had what the called "flesh color", but it was not the color of Jack's flesh, so I decided against it. Even the Crayola crayon company has gotten rid of their "flesh" color crayon since it was not the color of a lot of people's flesh.

The molds will now go to a lab where they will make the part of the hearing aid that goes into his ear. The woman told me that they like to get a very tight fit or else everyone (except Jack) will hear a whistling noise coming from the hearing aid. We will go back in two weeks to pick them up.

The hearing aids are covered by Early Intervention which is great because they cost $1750 each. We were originally told we would get loaner hearing aids since we are hoping Jack will get cochlear implants and then he won't need the hearing aids anymore. I asked about this and the woman said he was already approved so we should just get them. She also said they didn't currently have any loaner hearing aids. I don't have to personally pay for them but it does seem a waste of money. She said I could bring them back when he is finished with them. I think I will find someone who needs them myself and send them to them. So, if you are reading this and need hearing aids for your child contact me and I will get them to you when I can.

I asked her if she thought the hearing aids will help Jack hear. She said Jack's hearing loss was beyond the limitations of their testing equipment. She said it was unlikely they will help him hear but you never know. They have two purposes other than helping him hear. One is to stimulate his auditory nerve and the other is to prove that he can't he helped by hearing aids so that the medical insurance will pay for his cochlear implants.

I hope they help him but I am having visions of them making a high pitch noise, the dog howling and everyone freaking out. Jack is able to ignore all the chaos but no one else is. Should be interesting.

Even though I am very aware that Jack is deaf, (or to be politically correct, I should say he has profound hearing loss) it is still a killer to hear them say, "his hearing loss is beyond the limits of our testing equipment." Julianna has no problem accepting it and Jack has no idea that anything could be different, but it still sometimes gets to me. I am not sure I will ever get to the place where it is no big deal.

Jack has been having some issues with his physical therapy. His therapist said she thinks he needs a helmet for his torticollis. I was really hoping to avoid it. He made great strides with therapy at the beginning. The therapy still seems to be helping him, but it is going a lot slower than the physical therapist would like. She said it will get harder and harder to correct as he gets bigger so we should do everything possible now. The helmet is weighted so it will force him to tilt his head to the left instead of always to the right, which is what he is doing now. He can turn his head to the left now. At first he couldn't go to the middle or the left. It seemed like his head was fused so he was turning all the way to the right. He has made a lot of progress and he can now go to the middle or the left, but he generally prefers to have his head turned to the right.

I asked the therapist if the helmet covers the ears. She said it does. I asked her how that would work with hearing aids or the cochlear implants. She said she didn't know since it had never come up before. She said they want the babies to wear the helmets 23 hours a day. I asked her how it would work if he wore his hearing aids or cochlear implants (when he gets them) in the day time and the helmet at night. She said she wasn't sure about it but she would find out. I really like his physical therapist. She has a former preemie herself, a 24 weeker, so she gets it. Her daughter had a bunch of issues but she is doing better now, although she still has significant visual impairment from having retinopathy of prematurity. She lives in Wantagh School District as well and said they are really great with special needs kids and offer a lot of services. That is good to know since it looks like we will be needing a lot.

Jack is still working on general body movement. He is still not rolling over at almost 9 months old (5 1/2 adjusted). My friend's baby is 2 1/2 months old and rolling over. All the babies in his class are sitting up. I know you aren't supposed to compare but it is tough not to. I can't help but wonder if we will ever get to the point where he is walking. He can bear weight on his legs and that is a good sign, so I hope we get there. It took him forever just to have head control, but it looks like he has that down now. I take some comfort in knowing that Julianna was very behind and eventually caught up. She was only 6 weeks early but she was many months behind in just about everything. No one would ever know that now. I hope Jack follows in her footsteps!

We still have physical therapy twice a week, speech therapy once a week and cranio-sacral therapy once a week. I do exercises with Jack constantly. I am hoping it all works. He is so happy and he laughs through all the exercises. Sometimes it hurts him and he gets mad but most of the time he is smiling and laughing. He just loves Julianna and he is happiest when he sees her. I try to get her to sit on his left side so he is forced to turn that way to see her.

Jack has a sedated CT scan on Monday. The scan is to check his inner ears and to see how thick his temporal bone is. It has to be a certain thickness in order to anchor the cochlear implant. Sometimes babies do not have a thick enough bone and the surgery has to wait until they are older. They are also going to check to make sure all his inner ear structures are present. He has an appointment with his doctor tomorrow to be cleared for the sedation.

On Tuesday night I went to the Jimmy Buffet concert at Jones Beach. While I was there I remembered the last time I saw him, four years ago. On that day I was told by a doctor that the hormone status of my cancer was the worst case scenario ( I later learned that was untrue due to herceptin) and it was an 8 out of 9 on the scale of how aggressive a tumor can be (Bloom-Richardson scale). http://maryellenandjulianna.blogspot.com/2009/08/tumor-hormone-status.html I made me think about how things often turn out a lot better than we think they will. I made it through that. Jack made it through his 106 day NICU stay where I heard over and over how he might not make it. Julianna made it through her early issues.  Maybe I will be able to bring them with me in a few years and they will BOTH be able to sing along. How cool would that be?



Monday, August 12, 2013

Updates - Genetic Testing


I haven't been keeping up on this as much as I would like. It has been a pretty busy summer so far. 

I took Jack for his genetic testing on 7/30. We went to Long Island Jewish. It took me about 3 months to get this appointment. I had to take the day off to go. They made us wait a long time and I always hate that.

When we got in there were two women there. The room was about 5 x 8 and we (Jack and I ) and the stroller were also in there. The woman started telling me what a gene was, what a chromosome was, etc. Pissed me off again. Why do they automatically assume you are an idiot? I explained to her that I was a biology major in college and I had a pretty good genetics background and I really just wanted to get the tests done. (Not a kindergarten level genetics lesson.) I told them we were supposed to have the deafness profile sent to Iowa and then a few more tests due to his cleft palate.

They then informed me that we couldn't do the deafness profile. The deafness profile gets sent to Iowa. The lab there is not a New York State accredited lab. Because they are not NY State accredited there are only so many tests from NY State they can do each year. They told me that the NY State limit had been reached the night before we got there. They told me we can send a few tests locally but we can't get the whole profile done. She said I can come back in January to have that done or I can go to another state to have his blood sent. Great. I waited three months to get in there and they can't send what I wanted sent. I hate LIJ. Immensely.

So we sent a few things and they said they will call me when the results come back. Luckily I do not have to go back there and have them hold my hand while they give me the results. I had to do that when I went for the genetic testing (BRCA) after being diagnosed with breast cancer. It was strange that they can call you up and tell you that you have cancer but they can't tell you the genetic test results unless you come in. They say it is because they wouldn't want to give you upsetting genetic news over the phone. But they can tell you that you have cancer over the phone. Go figure.

We should get the results in a few weeks. Until then we are working hard with physical therapy, enjoying summer and having fun!

Tuesday, July 23, 2013

More About The Cold Caps

The cold caps have been in the news recently. They are finally going to do a clinical trial to see if they work. There are a lot of people who have used the cold caps with complete success, and I am one of those people.

Are they hard to use? Well, I wouldn't say hard, but it requires commitment. It is some work to get the ice and drag the cooler around. There are chemo centers putting freezers in and I believe using the cold caps would be much easier if you didn't have to get dry ice and drag a cooler along.

Is it painful? The first one for each session is really cold. It is a bit harsh but your head gets numb pretty quickly and it really doesn't hurt when its numb. They also gave me ativan (like valium) when I did my chemo so I didn't feel too much.

There are a lot of places you can learn more about the caps. I got a lot of great information from breast cancer . org. Here is the area where they talk about the cold caps:
http://community.breastcancer.org/forum/6/topic/735873?page=302#post_3637075

Here is the Punguin Cold Cap website:
http://penguincoldcaps.com/

They have information from a lot of studies on their site. These caps have been used in Europe for many years and have been studied extensively there. The scalp cooling therapy to save hair is considered a normal part of treatment in many countries.

Here is a link to an ABC news story where they are talking about doing a clinical trial with the caps. This is a different brand than I used. I used the brand Penguin Cold Caps.
http://abclocal.go.com/wtvd/story?section=news/health&id=9182016


I really hope the use of these caps becomes more widespread. I used them in 2009 and I was told I was the first woman in the NY metropolitan area to use them. It was so helpful to me. I was able to go about my normal life and not look like a cancer patient. I certainly felt like one at times, but I did not LOOK like one.

It really helped me to have control over something during that time. Chemotherapy is hard. Having everything feel like it is spiraling out of control is hard. If you can maintain control over something I think it really helps.

I have pictures of the Penguin Cold Cap use on this blog. They start with the chemotherapy on 12/7/2009.

If you are reading this because you were recently told you need chemotherapy, I wish you strength in your fight. Feel free to contact me if you have questions.


                       This is a picture of me wearing a Penguin Cold Cap during my chemotherapy.

Monday, July 1, 2013

Dr. Roland - NYU



After tons of waiting we finally got to see Dr. Roland at NYU. I decided to drive instead of taking the train since we had a 10am appointment. I thought it would be tough to take the train during rush hour. Also , finding a parking spot anywhere near a train station  is next to impossible. So we drove in. It is 30 miles from Julianna's daycare. I checked  it with the GPS. That is about an hour by train or a bit over two hours by car. Unless you are from this area you probably can't understand that, but it is reality.

I knew where a good street parking area is and it is only a block from NYU. There is no parking there from 8 am to 9 am due to sweeping. That means if you zoom up a bit after 9 you can score a spot. I lucked out and got one. Street parking is $7 for two hours and a garage is $20 for about the same amount of time. It is more than the money though, I am not comfortable giving my keys to the guys who run those garages. Anyone who has seen Ferris Bueller's Day Off  knows what they do to the cars.

We got to our appointment a bit early. I had already done all the paperwork because they sent it to me online. I had to pay ahead of time, $600. They don't take my insurance but I am hoping I will get something back if I send the receipt in.

We saw Dr. Roland and he examined Jack and looked at his ABR results. He said he appears to be a good candidate for cochlear implants but he will have to get some imaging first (CT, MRI). He said it does not appear that Jack has genetic deafness and it is likely from an ototoxic event. In Jack's case that is the simultaneous administration of gentamicin and lasix. We will still do genetic testing to rule out that unlikely possibility, but no one seems to think it is likely.

He did feel that we should get Jack hearing aids. Although he does not think they will help him hear, he thought it would help keep his nerves stimulated. I asked him what the timeline would be for Jack having surgery. He said there is almost no wait for him, but I would have a wait getting into the NYU Cochlear Implant Center where they will do the imaging. After the imaging we will have to decide what type of equipment will be best for Jack and, secure approval from my medical insurance company. So it might be a few months before he can have surgery.

I left Dr. Roland's office feeling pretty confident that he will be able to help Jack. I called the NYU Cochlear Implant Center for an appointment and had to leave a message. I am hoping they will get back to me soon because I would really like to get it all set up.

Tomorrow we are off to Oregon for a family reunion. We are pretty psyched about it! I am hoping it isn't too bad flying so far with both kids. We shall see.

Thursday, June 20, 2013

My Unconventional Path To Motherhood



“Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body. ” ~ Elizabeth Stone



I get a lot of calls from people asking if I would speak to them or a friend of  theirs about certain experiences that I have had. Often it is about breast cancer or the Penguin Cold Caps or surrogacy , but most often it is about pursuing single motherhood. I have had great phone conversations with women I have never met about these subjects.

Lately I have had more and more conversations about single motherhood and infertility. I speak to many women  who are trying to make this big decision. Should become a mother via sperm donation?  I remember how long I thought about it before I finally started trying. Would I be able to do this? Will my child be sad that he/she doesn't have a Dad? Will I be able to balance it all? How will I handle it financially? Will people be judgemental about this decision? I went back and forth about it, literally for years, before I decided to start trying. I think the one thing that made me decide came from an email conversation I had with a woman who was a single mother by choice. She said to think about your life in ten years if you do it or you don't. That made my decision easier. I thought of a busy life with a little child vs. a quiet life filled with regrets. Decision made.

I think so many women feel the urge to be mothers. Not all of course, but a lot. We think it all has to follow a certain pattern. Meet a nice guy, settle down, have kids. What if you never meet someone where you just click? I have dated really nice guys but I couldn't see myself with them forever. There were guys I met where we clicked great but they had no interest in having kids and that didn't work for me. I have friends who have confided in me that they were never really in love with their husbands but they married them because they wanted children so badly. I know I couldn't do that either.

It took a long time for me to conceive Julianna. I was 40 when I went to the fertility clinic for my consultation, 41 when I started trying and 42 (by 4 days) when she was finally conceived. I think a lot of women know that it is harder to conceive when they are older but they think it will be fast for them.  I was in that group. I became somewhat obsessed. I read everything there was to read about fertility treatments. I was so angry at myself for waiting so long to start trying. When I found out you could check the success rates for IVF clinics on sart.com I checked them all. I read every fertility blog, did acupuncture, took supplements and went to the fertility clinic daily. It took six intrauterine inseminations (iui), three invitro fertilizations (IVF) and one frozen embryo transfer before I was blessed with Julianna. Along the way I had one ectopic pregnancy that was heartbreaking but made me more determined to press on.

I always wanted Julianna to have a sibling. I tried myself for some time after she was born. When my friend told the OB I used when I was pregnant with Julianna that I was going to try to have another child  he said, "She might as well take a gun and put a bullet in her head, because the outcome will be the same." I went to a perinalologist who told me I could try. She said I had a 40% chance of having pre-eclampsia and HELLP syndrome again. When she read my medical records for when I had Julianna she said she was surprised I survived it. She said there was really no medical explanation why I did. She thought with careful monitoring she could get me through a pregnancy but I had a super high risk of having a very premature baby because she wouldn't let the pregnancy continue if there was any risk of it becoming life threatening. I did two IUIs and three IVFs. I had two early miscarriages but no baby.

When I got the breast cancer I stopped trying. Because the type of breast cancer I had was hormone negative that would not have stopped me from carrying another baby. However, I strongly believe that my breast cancer was God's way of telling me not to get pregnant again, that it wouldn't end well. I want my life, I want Julianna to have me and there are other paths to motherhood.

I am thankful that there are generous people who are willing to share their fertility and gestational capabilities through gamete donation and surrogacy. Tierney will always be Jack's "Tummy Mommy". Without her we certainly wouldn't have Jack and she went through an awful lot throughout the journey.

To all the women who are trying over and over against all odds, with failures and heavy hearts,  I pray you find your way to your child(ren). My memories of that long dark struggle still bring heartache. If what you are doing isn't working, remember there are many paths to motherhood. There is sperm donation, egg donation, embryo donation, surrogacy, adoption and foster parenting to name a few. Some of those methods are costly but not all are. There are plenty of people who don't want to destroy their embryos and would like to donate them to someone who can give them life and love. I happen to have three embryos that I am going to donate to someone, but I am waiting for the results of Jack's genetic testing.

Life has been full of struggles on many fronts over the last few years. Through it all it is my children who have blessed me in ways I can not describe. The enthusiasm, strength and wonder  of their little hearts will always keep me going.

Almost all of the women I speak to who are contemplating single motherhood ask me how our life is and they want to know if I have any regrets about my decision to do it on my own. The answer to that is that our life is great. We are busy, happy and (finally) healthy. I do not think my children suffer at all from not having a Dad in their lives. That may change in the future, but I do not see that now. And yes, I do have one regret and that is that I didn't do it sooner.

If you are making this big decision I wish you luck. I hope you find peace in your heart, whatever you decide.






Thursday, June 13, 2013

Pictures



For some reason Blogger distorts the pictures and everyone looks shorter and fatter than they really are. I really do not need any help with this myself, but my kids are not this short and fat.  However, I think if you click on the pictures you can get the proper picture. I do not know why this happens.

                                                     
                                                            Jack. Ready for summer!!


 
                                                           Jack, digging the shades.



                                                                            Bathtime!!


                                                        Jack post op at the hospital


                                                      Cathy with Jack at the hospital


                                              Julianna dressed for fancy day at school.


Julianna on a regular school day. Every day is fancy day for her.


                                                             Julianna at soccer.


                                                         Julianna at the LI Ducks game.


                                             Dinner with Grandma and Pop Pop. My Dad was having an especially good day and we all enjoyed it.         




                  

Early Intervention


I had my meeting with Early Intervention. Jack was evaluated when he was 3 months (adjusted) and tested at or below one month old for everything except "social" where he tested over 3 months old. He is a pretty social guy and loves to laugh and smile at everyone. He was approved for physical therapy twice a week and speech therapy once a week. At his age they do speech therapy through feeding and it is really about strengthening his mouth and facial muscles.

Early Intervention usually will come to the baby's home or daycare. I was really counting on that because I am having issues getting him everywhere and still getting to work. However, they are unable to find a physical therapist who can do that. So I am going to have to take him to physical therapy twice a week. They found a place that is close to my home but I am still going to have to bring him there. They think they will be able to get someone to come to us in the fall. I sure hope so.

We still go to our craniofacial therapist. She is also a physical therapist and is really helping Jack. We were there yesterday and Jack is really progressing. I can't imagine how he would have tested if he had not been receiving this therapy. She taught me a lot of exercises to do with Jack. His problem is that his neck and back muscles are really tight from all the weird positions he was in when he was on the ventilator. They kept him sedated so he couldn't move much and that made those muscles stiff. He also has low muscle tone in other areas. None of the therapists see any evidence of cerebral palsy and that does give me some comfort. They all do think he should catch up eventually but it will be a lot of work for him.

I do see him showing signs of improvement. He brings his hands together and he also pulls his feet together. That doesn't sound like much but going "midline" is a really good sign. He has discovered his feet but he can't grab them because his back muscles can't bend enough. One of his exercises is to roll him to try to stretch out his back. Another is to put a pillow behind his neck to stretch his neck muscles out. His neck is so tight that I really have to bend it so much just to wash him or dress him. His tight neck causes his tongue to stick out.

He has been doing a lot better with his reflux. I have stopped giving him the zantac and he really hasn't had any problems. He loves to eat and is getting to be a little fattie. They kept telling me he would have feeding issues due to his palate but he really hasn't.

Jack and Julianna are going to the doctor today. She is having a recheck because she had strep throat and he is having a well baby check. I  will see if he is on the chart for his real age yet. I think he might be. Jack is gaining and growing really fast. It took Julianna forever to get on the chart for her real age.  After 5 years she is still only in the 5th percentile for height and about the 20th for weight. She is small in stature but huge in personality.

I really am blessed with two happy kids. People always ask what I want my kids to be. My answer has always been that I want them to be happy. And they are very happy smiley kids.

Wednesday, June 12, 2013

Retinas


Jack had a tiny dot of blood in his eye and it freaked me out. With his history of retinopathy of prematurity (ROP) I was afraid his retina might be detaching. I don't even know if you bleed from a detached retina, but it made me very worried. We went to the pediatric opthamologist. She had to dilate his eyes which took about 45 minutes. Then we went in and she checked each of his retinas while I held him and he screamed like he had a hot poker in each eye. She had to hold his eyes open with a clamp. She did use numbing drops but I am sure it hurt him. She said his retinas looked really good and the blood spot was nothing. Phewww.

She also told me we had to come back in 6 months. She said that babies who had ROP, even if it was a minor case like Jack's, will likely need glasses early in childhood. That part is a bummer, especially since it might be hard for him to wear glasses and the external part of the cochlear implant since that goes over his ear. I am guessing they must have a way to do that but I do not know how they do.

After the appointment I dropped Julianna off at school and then took Jack to daycare in Merrick. When I was backing out of the parking spot at the daycare I heard a loud pop and then heard my front tire hissing. It turned out I ran over a brown bag with a glass bottle in it. I made it to a gas station hoping they could plug the tire but they could not. They put my donut on and are ordering me two new tires. They said they really can't mix an old and new on the front. I have to go back tomorrow to get the two new tires.

So, it has been one of those days.

This is an interesting article about the long term complications of ROP and the eyesight of premature babies who did not have ROP.
http://onlinelibrary.wiley.com/doi/10.1046/j.1365-2214.2002.02801.x/abstract?deniedAccessCustomisedMessage=&userIsAuthenticated=false

The more I learn about prematurity the more I can say, do everything you can to keep that baby inside for as long as you can.

Monday, June 10, 2013

So Many Appointments, So Little Time



Jack started daycare today. He slept through the whole check in process. Right now Julianna and Jack are in two different daycare centers. This adds a ton of time to my pre-work routine and it is long enough already. Gone are the days when I could throw clothes on and run out the door. My early day has me feeding and dressing Jack, getting Julianna dressed (no small feat for Miss Fancy and I must accessorize), getting showered, packed up and out the door. After out the door we drive to Children's Nest in Merrick where Jack will be dropped off, then Learn and Play in Mineola where Julianna gets dropped off and then I get to work. By the end of the month they will both be in Children's Nest. I would have gotten them in the same place but there was no room in Learn and Play for Jack and Julianna has been practicing for her big graduation for months. That big day is Friday. I am happy they will both be in Children's Nest. Julianna has been missing her friends from there for the whole year.

I am having issues fitting all Jack's appointments and work in. I also realize that it is not going to get easier. Tomorrow we have kindergarten screening for Julianna and then I have an Early Intervention meeting about Jack. I took the day off since they are both long meetings. On Wednesday Jack has an opthamology appointment. He still has immature retinas and I can't risk him having any problems with his eyes, especially considering his hearing. That appointment is in Great Neck and would require me leaving work in Mineola, going to Merrick to get him, then going to Great Neck with him, back to Merrick to drop him off and then having to go back to work in Mineola. Anyone who has driven on Long Island knows that would kill the better part of the day.

What I think I need is a personal assistant who could do something such as pick Jack up from daycare and bring him to his appointment where I could meet them on my lunch. Then, after the appointment they could bring him back to daycare. I just can't keep taking days off from work.

I am thinking I may have to get a full time babysitter for home when the fall comes. I like the idea of daycare because Jack will get to be with other babies and because they are open a lot. However, Jack's Early Intervention schedule and doctor's appointments may make that impossible.

I remember thinking it would be so much easier once he was out of the NICU. He is an easy baby but his appointments are plentiful. He sees the audiologist, ENT, GI guy, pulmonologist, cardiologist, developmental pediatrician, opthamologist, craniosacral therapist and genetic counselor. When Early Intervention starts he will have another 3 to 5 appointments a week. Then we will also have to go back and forth to NYU in NYC for all the appointments to see if he is a cochlear implant candidate. I am wondering how anyone who is also working can balance all this.

I am going to ask around to see if there is any college student who would be interested in driving Jack around for a part time job this summer. He is a happy boy and loud music in the car does not bother him at all.

Sunday, June 9, 2013

NYU Moved Up



NYU called me and moved our appointment with their cochlear implant surgeon from 7/29 to 7/1. I am thrilled!! The doctor is J. Thomas Roland. I can't read much about hearing impairment without his name coming up. The have the premier cochlear implant center on the east coast.

The FDA requires infants to be 12 months old before getting a cochlear implant, unless their deafness is caused by meningitis and then it is 6 months. Meningitis causes the cochlear to harden so time is of the essence to those babies. NYU frequently gets FDA waivers in order to implant babies earlier. I am hoping they will be able to do that for Jack since earlier is best for language acquisition.

I really don't even know if Jack will be a candidate for this surgery. He will have to have an MRI and possibly more testing before we even know if he can get them. I am also hoping they can implant him bilaterally in one surgery, which is relatively new. There is also a possibility my insurance won't even cover them. I called my insurance since there was no one listed on the plan as a cochlear implant surgeon. They told me to go to the appointment and have the surgeon's office call them and they would work something out.  I had a similar situation with my breast reconstruction and they ended up paying for it. A lot of parents have had big fights with their insurance companies because they were considering cochlear implants to be cosmetic. In the end most of them won and their kids had the surgery.

I am reading more and more about this surgery and deafness in general. They usually like to get hearing aids on the babies as soon as possible. They were not able to do the molds for Jack because of the fluid in his ears and they wouldn't do the surgery for the tubes before he was six months old. The hearing aids are not covered by medical insurance, but Early Intervention will pay for them. After Jack's surgery the audiologist told me it would be about six weeks because all the paperwork had to go through. I think that is a really long time and I know Jack finished all the Early Intervention evaluations and I did fill out tons of paper work. I have a meeting with Early Intervention and all the evaluators on Tuesday. Julianna has her kindergarten  screening on Tuesday morning so I made the Early Intervention on the same day in order to cut down on taking days off.

Jack is not likely to hear anything with the hearing aids. They still give them to profoundly deaf babies because it will keep his sensory pathways open. That will help to keep his auditory nerve stimulated and that should help him when he gets his cochlear implants. They are saying that in the best case scenario he might be able to hear a siren with the help of the hearing aids.

Here is an interesting video presentation about cochlear implants. It is done by Dr. J. Thomas Roland who is the doctor I am taking Jack to.
http://www.veomed.com/va021470552012

It is a little long, but very informative.




Wednesday, June 5, 2013

Jack Is Feeling Better



Jack's surgery went well and he is feeling pretty good. His hearing did not change at all and I am sad about that. I am not surprised, just sad for him.

We had to get up before 5. Julianna was a trooper and got up and got dressed pretty quickly. I dropped her off at my friend Colleen's house. Colleen was great too and I am sure it was no fun for her to get up so early either.

We got there pretty early and then waited a long time. Finally each practitioner came in to speak to me. I expressed my concern about his intubation to the ENT. He said he might not have to be intubated. Then anesthesia came in and said he would have to be intubated and he might have to stay overnight. I asked her if she meant he might have to stay overnight if they were having trouble extubating him, which I would understand. She said they might keep him overnight either way. Ugghh.

When they took him in to the operating room I went out to the waiting room and my friend Cathy was there. She said she asked the nurse to tell me she was there about an hour ago. The nurse said she would but she never did. As we were waiting in the waiting room a giant mouse ran across the floor. This did nothing to bolster my confidence. This is the same hospital where I had my original breast surgery and there were a lot of issues. Jack was in the Children's building, but they do share some of the operating rooms. All of the waiting rooms are separate

After about an hour an a half the ENT and the audiologist came out to speak to us. They said Jack did very well in the surgery. The tubes went in without difficulty. There was a lot of fluid in his ears and it appeared that it was there for a very long time. They said the auditory brain stem response (ABR) hearing test had almost exactly the same results as he had last time. I asked Dr. Smith (ENT) if he thought Jack was deaf because the NICU gave him gentamicin along with lasix. He said he can't say for sure, but it is very likely.

Dr. Smith said I should make an appointment with the cochlear implant surgeon at Long Island Jewish (LIJ). I advised him that I already had an appointment with Dr. Roland from NYU. He said he thought their program was just as good and there was no reason for us to travel. He also said they know Dr. Roland and Dr. Roland was just at LIJ a few days ago lecturing them. It occurred to me that if Dr. Roland is at LIJ lecturing them about technique then I should absolutely go to NYU and see Dr. Roland. Dr. Smith really pushed the LIJ program but my research tells me there is no comparison. I also think I do not have a ton of confidence in LIJ in general. I did not tell Dr. Smith about the mouse.

Jack was pretty upset in recovery but relaxed after he had some tylenol, a bottle and a lot of hugs. He is the sweetest little guy. We were discharged at about 10:15. No one ever mentioned what the anesthesiologist said about staying overnight and of course I never brought it up.

He had a good day and a good night. He is getting tylenol and the ear drops. I am staying home with him today in case he has any problems.

Thanks everyone for all the prayers and well wishes!!


Tuesday, June 4, 2013

Surgery Day

We are getting ready for Jack's surgery today. He wasn't allowed  to eat after 11:30 pm. He can have clear fluids until 4:30 am. I am getting ready to give him some apple juice since I hear him starting to stir.

I am worried about how he will do with the anesthesia because of his fragile lungs. I am worried that they may have difficulty extubating him.

I am hoping they will let me be with him in the recovery room as soon as he comes out of the operating room. I feel guilty that I was not there with him all the time in Arkansas. I think if I had been maybe I would have been able to stop them from giving the interacting drugs that likely caused his deafness. There is no way I will be anywhere but right next to him for any medical procedures that happen here.

My friend Cathy is going to meet me there to sit with me while I wait. I am dropping Julianna off at my friend Colleen's house at 5:15 because it is too early to take her to daycare. We have to be at the hospital at 6:00 and his surgery is scheduled for 7:30. He will have the auditory brain stem response (ABR) hearing test while he is still under anesthesia. The tubes are supposed to be pretty fast. I know the ABR takes a little over an hour. If all goes well we should be out of there pretty quickly.

Thanks for all the well wishes!! Happy Birthday to my friend Vicky!!!!

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.


Jack


                                                                  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!!