School Started!

We enjoyed the last few weeks of summer. We were up in Pennsylvania for the weekend and had a nice time. There was one strange event. Jack's left ear, the one where he lost the implant, often bothers him. The incision behind his ear has a raised red spot. It has since he had the surgery to remove the implant. He has been seen by numerous doctors, and no one thought it was infected, it is just raised in one spot and redder there. He was rubbing the spot and I looked at it and saw something hanging out of it. I touched it and it came out completely. There was no resistance, There was also no blood, pus or any other fluid. It was his electrode. The doctor has said he would leave it in as a "place holder" but it came out on its own.

I emailed the doctor. He said it happens sometimes. It was not anchored to the implant since that was removed and it worked its way out. He said I should just put bacitracin on the spot. He also said we should schedule Jack's re-implantation soon since he no longer has the electrode in the cochlear. He didn't think it was a big deal, but I must admit it was pretty creepy. It is about three inches long. Super weird to have it just come out of his head like that. It did not seem to bother him at all though.

Both Jack and Julianna had their first day at school. Julianna started first grade on Tuesday and Jack started the Hagedorn Little Village School yesterday.

Julianna was a little sad that some of her friends are not in her class this year but she seemed excited to meet some new kids. Her teacher is only going to be her teacher for this week and then will be leaving on maternity leave. She will have a permanent substitute for the rest of the year. I am hoping it will be the same person all year. They are all still pretty little and need some consistency.

I took Jack to school yesterday. He has a very small back pack and he looked super cute with his little name tag. He can walk a few steps but I had to carry him. He went straight to the toys. His teacher seemed very nice. He is going to have eight kids in his class but they were not all there yesterday. The vast majority of the kids in his class are former preemies. I think Jack might have been born the latest at 26 weeks. He has a 23 weeker (with a twin in the other class), a 24 weeker and two 25 weekers. They all have different issues. The class is focusing on developmental delays (physical) but it is going to have a primary focus on language. Jack is the only deaf child in the class.

I spoke to Jack's speech therapist. She will be assisting him two times a week at school and one time a week at home. I asked her what her thoughts on teaching Jack sign language are. She said it should be avoided and we need to concentrate on the auditory verbal approach. Every speech pathologist and teacher of the deaf we have worked with has told me this. They feel he needs to hear and listen first. He can learn to sign at some point but it should not be first. I that they all have a tremendous amount of experience and they base their opinions on the current research. My problem is that so many of my family and friends disagree with this. They go on and on about how this is wrong and I am not doing the right thing for Jack. They all talk about how they did baby sign with their kids and it was the greatest thing ever. I agree. I did sign with Julianna. However, it is very different when the child is deaf and has cochlear implants. It is a very specific type of learning.

Jack is getting the bus home from school. I would pick him up but he and Julianna have the same dismissal time. They get out of school at 3:30. Jack's bus did not arrive at our house until after 5 pm. I also saw they they did not seem to have a proper car seat for Jack. They have the integrated restraint system which is like a built in booster seat. It has a 5 point restraint, but it has him just sitting on a pad on a regular bus seat. I looked it up and it does not seem to meet the NY state law for child restraint systems in buses. I an going to talk to the bus coordinator at the school today. I would prefer to drive him home because I don't think 90 minutes on a bus is good for him and I don't think it is safe. I am hoping to find some type of solution.

Jack woke up three times last night. He was screaming his head off. He would not let me cuddle him and was throwing himself down like how a child would during a tantrum. He has never done anything like this before. He did not have a temperature and did not seem like anything was hurting him. He would not relax to sleep with me. I just don't know why it happened. Finally, Smudge decided to sleep next to Jack's crib. After awhile Jack feel asleep looking at Smudge.

I do not know what upset Jack so much. . His teacher said he had a great first day and was very happy. It brings me back to the bus. Maybe because it was so long it upset him. Maybe they weren't nice to him. I just don't know. Of course the whole night terror thing could be a coincidence, but it seems unlikely.

We are going to try it all again today and see how it goes. I am hoping he has a good day and a good night.

Jack is Walking!!!

Little man Jack has started to walk. It is very exciting, especially since I had been told be the neurologist that it was unlikely he would ever roll over. He can do about 10 steps in a row and he does often drop down to crawl because it is faster. I am thrilled and so is his biggest cheerleader Julianna.

I have retired from my job. I am pretty happy about the decision. I will now have time to spend with the kids and a lot of time to devote to Jack's care. There are so many possibilities and it should be great.I am hoping he

Jack is going to be starting the Hagedorn Little Village School on September 4th. The school is for children with special needs. Jack will be going in the afternoons and his class is predominately for language. I went to the parent orientation last night. The program is for two year olds. Jack is 21 months old. He is allowed in the program because the age cutoff for school in this area is December 1st. Jack's birthday is November 28th. So he will be the youngest child in the program. He won't be adjusted two (when he was supposed to be born) until March. I am hoping he will be able to do it. He has been going to daycare so he is used to a routine, but this is a lot more academic.

Early Intervention is supposed to provide a bus for Jack. I am going to drive him there, but they are going to provide a bus to bring him home since Julianna and Jack are getting dismissed from school at the same time. Julianna's school is very close to our house and Jack's school is less than 10 minutes away in Seaford, NY.  I was contacted by the bus driver who told me that Jack might be on the bus for an hour and a half. I am freaking about this a bit. They are planning to drive him all over the county with the other kids before they drop him off. There will be a matron on the bus but I am worried about that length of time each day. I am trying to figure out how I can arrange to pick him up and still get home to get Julianna.

We have had a nice summer. We managed to get up to Pennsylvania a bunch of times. We had a lot of family and friends visiting. There will be a few more summer days to enjoy before we get back to the daily grind that fall will bring.

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?

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.

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.

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.

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.