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.

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.

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.

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!!

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!!!!