Thursday, September 11, 2014

Cochlear Implant Working Again



We had an appointment with the audiologist today. She was able to trouble shoot Jack's equipment and get him hearing again. The microphone was not working properly. I had called Advanced Bionics numerous times and they sent me a new microphone and a new processor but I could not get it to work. The audiologist reprogrammed the processor. She also had to turn the program down in volume when we used the new microphone. The new microphone with the old program was causing Jack to cry and blink his eyes. It was much too loud. We are going to have to turn it up slowly again.

I met with his speech pathologist at the school after his audiology appointment. I showed her everything we are doing. I also showed his teacher how to put it back on him if it comes off (happens all the time) and how to turn it off and remove it before he gets on the bus. He can't wear it on the bus because the microphone is a choking hazard.

Jack started his physical therapy (at home) yesterday. It went ok, but he was very tired since it kept him from his early nap. It is hard to fit all the therapies, school and the naps in. He is not a happy boy when he misses his nap. Jack is a great sleeper. He goes to bed at about 6:30 and sleeps until 7:00. He usually takes a nap around 10:00.

I am retired now but I am busier than ever. I am hoping things settle down a bit once we get used to the new fall schedule.

Friday, September 5, 2014

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.




Friday, August 29, 2014

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.






Monday, August 4, 2014

Updates


I haven't written on here in so long. Sorry about that, life has been crazy busy.

I decided to wait awhile before having Jack get a new implant to replace the one he lost. He was having so many problems with his lungs that I felt I was really taking too much of a chance. He will probably have the surgery some time in the fall. In his last surgery his oxygen saturation dropped to 72%. It took them awhile to get it back up and it was really scary for everyone involved.

Jack had his ear tubes replaced a week ago. I was nervous about the anesthesia but they assured me that it was only mask anesthesia. He did not need to be intubated. His oxygen saturation did drop but only into the high 80's. They were able to get it up rapidly with blow by oxygen.

We have been having some issues with the equipment for Jack's cochlear implant. There have been problems with the external microphone and the processor. I have not been thrilled with the customer service from Advanced Bionics. I am waiting to get into the audiologist so we can troubleshoot everything. It is tough when there is a problem in the summer since there are so many people on vacation. In the meantime we have been teaching Jack some sign language. There are a lot of people against teaching any sign language to small children with cochlear implants, but I feel I need to go with my gut and make sure he has some communication skills.

Jack is still not walking. He can take some steps when I hold his hands. His physical therapy assessment puts him at the 9 month level and below the first percentile.  He is now 20 months old, 16 adjusted. It is disheartening to read the assessments from each of the therapists. He is happy and I feel he is progressing, just very slowly. I can comfort myself by realizing that he has far surpassed what a number of doctors predicted for him. I was told he will never walk and would likely never roll over. He crawls with great speed. He is climbing. He pulls himself up. He does have a right side foot drop. We are not sure why. He might have had a stroke while he was being ventilated and he might have some cerebral palsy. In order to find out for sure he would need an MRI. If he has that they would have to remove the magnet from his cochlear implant. They can do that through his scalp, but I have decided to wait and see what happens. I realize that having a diagnosis won't change anything and the treatment will be pretty much the same no matter what is causing it. He has physical therapy twice a week. He also has a teacher for the deaf twice a week and speech therapy three times a week. I am hoping we can add some occupational therapy. Meanwhile we clap and cheer anytime he does something new. Julianna is his biggest fan. She cheers anytime he does anything and he laughs and smiles every time. I enjoy watching them together. It makes me realize how worthwhile this whole journey is.

I had Jack tested to see if he could go to a preschool near us for kids with special needs. He was accepted and will go in the afternoons. They will have a lot of therapy for him as well as speech therapists and audiologists on staff. I think it is such a great opportunity for him. The same school is also starting a preschool program for deaf children and he will be eligible to go there next fall for a full day program.

I am planning to retire soon so I can spend more time with Julianna and Jack. I want to do more things with them and working full time has made that impossible. I would also like to take Jack to water therapy and a Mommy and Me class so he can make more progress. Julianna is thrilled with the idea and she can't wait for me to be home with her more often.

We are having a good time and enjoying summer. We were lucky enough to have my sister Kate and her family at the lake. The cousins had a ball together. I will post pictures soon.

I will try not to wait so long to update again!




Saturday, March 22, 2014

Pictures


Here are some pictures of our family.




Julianna and Jack Valentine's Day

Valentine's Day

Jack - March 2014


Julianna and Jack March 2014


 St. Patrick's Day 2014


Julianna and Jack - St. Patrick's Day 2014

Julianna turns 6

Happy 6th Birthday Julianna

This is how Jack's ear looked right before he lost the implant. It went from normal to this in less than 48 hours.
This is how swollen the whole implant was looking.
Jack's ear. Just before the implant came out.

Julianna lost her first tooth.

Wednesday, March 19, 2014

Setbacks

One of Jack's cochlear implants had to be removed. I have heard this phrase many times, "well, it is a very rare complication but......."
I noticed that Jack's left cochlear implant was looking a little more prominent. I was attributing it to his plagiocephaly (abnormally shaped head) but I was watching it. All of a sudden it was looking very swollen. I called NYU a number of times and they kept saying that they would get back to me. They never did. Then the incision line starting looking extremely infected. I took pictures of it all and emailed it to the nurse practitioner and the surgeon. The nurse practitioner emailed me back and said they should be able to see Jack in a few days.
I knew it was pretty bad and I was pretty worried that Jack was going to get septic or meningitis. He did not have a fever and he was acting fine but I was getting frustrated and made an appointment with my pediatrician so he could at least get antibiotics. Finally the surgeon called me back. He had seen the pictures and he said to get Jack into NYU and he would get him on IV antibiotics and operate in him to clean the infection out. He hadn't seen the email because he was getting ready for three surgeries that morning.
My friend Cathy said she would take care of Julianna and we went into NYU. They are pretty efficient there. They got him on the antibiotic pretty quickly. Dr. Roland came to see Jack in between his surgical cases. Jack went into the operating room at about 5:30 pm after Dr. Roland did three cochlear implant surgeries.
He came out to see me after the surgery and said he was unable to save the implant. He said it was very rare for it to get infected over two months after the surgery but it does happen sometimes. He said we can so another implant in about three months. The cultured the infection and it was a staph infection.
Jack had great difficulty during the surgery. His oxygen saturation went down to 72. They stopped everything, gave him breathing treatments and were able to get his breathing back to normal. His poor lungs have taken such a beating.
We stayed at NYU overnight and came home the next day. We saw Dr, Roland the next week and then the week after when he removed the stitches. We scheduled his next surgery for May.
It is pretty frustrating having setbacks. I sometimes feel like Jack can't catch a break. He is a happy guy though. He was clapping hands on his way into the operating room and was laughing and happy pretty quickly after his surgery.

Wednesday, January 22, 2014

Jack Had RSV, Pretty Scary

I picked Jack up at daycare on Thursday and his teacher said he was very tired and didn't want his bottle. I took one look at him and realized it was because his breathing was so bad. I gave him two treatments and my friend Maddy drove to the hospital with me, Julianna and Jack in the back. She dropped me and Jack off and was kind enough to keep Julianna overnight for me.

 Jack's O2 saturation was 88 but quickly dropped to the low 80's. They gave him 5 treatments back to back, IV steroids and admitted him. He still had nasal flaring and retractions and his wheezing was really bad. They were pretty worried because he did not seem to be responding to treatment but he finally started to. He had breathing treatments every three hours for a little over two days. They cultured him and he was positive for RSV.

 On the third day when the pulmonology fellow saw him she said there was no way he could be discharged. When I saw Jack's pulmonologist she said she would discharge him provided I slept next to him (I do anyway to hear his breathing, not in same bed), gave him treatments every four hours, gave him the oral steroids, take him back to pediatrician and pulmonologist and come back to the ER at the slightest sign of any problem. Of course I have no problem with those things.
 What is RSV and why is it such a big deal in preemies?
RSV 101: What Every NICU Parent Needs to Know For most infants, respiratory syncytial (sin-SISH-uhl) virus (RSV) causes an illness like a common cold in the upper and lower respiratory tracts. But some babies, including those born preterm and those with special health care needs, may be at high risk for a severe infection which can cause pneumonia or bronchiolitis, inflammation of the small airways in the lung. These conditions can lead to serious complications, re-hospitalization and in some cases, death. According to the Institute of Allergy and Infectious Diseases, 75,000 to 125,000 children in the United States are admitted to the hospital for RSV infections each year. Fortunately, education about the virus and prevention steps can help you reduce your child’s risk.
Is Your Baby or Young Child at Risk?
A preemie may appear healthy, yet still have injured lungs. Chronic Lung Disease (CLD) is the result of a baby’s lungs getting irritated or inflamed. Babies may need a machine called a ventilator to help them breathe. Pressure from a ventilator can sometimes irritate the fragile lungs of these babies, which can cause CLD. CLD may also develop in babies who have received high levels of oxygen for a long time or have had pneumonia. Because their lungs are not normal and may still be healing, babies with CLD are at increased risk for severe RSV disease.
  How Early Was Your Preemie?
If your baby was born at 28 weeks or earlier…Your baby may not have received all the virus-fighting substances, called antibodies, from mom. Also, babies born at 28 weeks may have small, underdeveloped, and narrow airways for breathing. This puts them at high risk for severe RSV disease.
If your baby was born at 29-31 weeks…A bad lung infection can cause clogged airways and serious breathing problems that might lead to hospitalization.
If your baby was born at 32-35 weeks…and is 6 months or younger at the start of RSV season, he or she is considered to be at high risk for severe RSV disease.
If your baby was born at 36 weeks or later…Most full-term babies get a mild form of RSV disease. Symptoms and Diagnosis
An RSV infection usually causes moderate-to-severe cold symptoms in the upper and/or lower respiratory tract. In young infants, the symptoms may be less obvious. According to the American Lung Association, “In very young infants, the only symptoms may be irritability, decreased activity, and breathing difficulties.”
Coughing, sneezing or wheezing that does not stop Stuffy or runny nose Fast breathing or gasping for breath Spread-out nostrils and/or a caved-in chest when trying to breathe A bluish color around the mouth or fingernails A fever (in infants under 3 months of age, a fever greater than 100.4°F rectal is a cause for concern) Mild sore throat Lower appetite Trouble sleeping For diagnosis, your baby’s physician may test a nasal swab for evidence of the virus. A chest X-ray and/or oxygen saturation test may also be done to check for lung congestion.
 Treatment As with many viruses, once the diagnosis is confirmed treatment is limited to managing symptoms. Less severe cases may receive medicine to reduce fever or medicine delivered via a nebulizer, which converts medicine to an easily-inhaled mist to assist the lungs during an infection. Fluids are often recommended especially for young children and infants to prevent dehydration. A bulb syringe can be used to suction mucus from nasal airways in infants. If your child has severe form of RSV, he or she may need to be hospitalized and treated with oxygen, have mucus suctioned from the airways or be placed on a ventilator to assist with breathing. Often hospitalization lasts a few days with most children recovering within one to two weeks.
Prevention RSV spreads just like a common-cold virus. According to the CDC, “people infected with RSV are usually contagious for 3 to 8 days. However, some infants and people with weakened immune systems can be contagious for as long as 4 weeks.” Because contracting RSV does not give protection from future infections, your child can get RSV multiple times—even during a single season. The first infection is usually the most severe with subsequent infections generally having milder symptoms. Taking a few extra precautions around your family and friends can help protect your baby and young child during RSV season.
Wash your hands thoroughly before touching your baby, and ask others to do the same. Cover your coughs or sneezes and show siblings how to practice good hygiene. Don’t let anyone smoke in your home or near your baby or child. Wash your baby’s toys, clothes and bedding often. Don’t share eating utensils and cups with one another. Consider regularly disinfecting high-traffic hard surfaces such as door knobs. Keep your baby away or limit exposure to crowds, young children and anyone with colds. Talk to your pediatrician about palivizumab (Synagis®) shots during RSV season. Preventative Injections Palivizumab (Synagis®) is the only FDA-approved medication to help protect high-risk babies from severe RSV disease. Even though it is given as a shot by your healthcare provider, it’s not a vaccine because it works differently. Each shot, which is given monthly during RSV season, provides a dose of virus-fighting substances called antibodies that help prevent severe RSV disease from infecting your baby’s lungs.
“RSV is one viral illness that actually can be prevented with adequate prophylaxis,” said Dr. Sarmistha B. Hauger, Director, Pediatric Infectious Disease, ‘Specially For Children, Dell Children’s Medical Center. “Babies who fit into the high risk criteria and are born at the time that RSV may be circulating in a community should be identified quickly, and begun on a regimen of monthly injections of palivizumab (Synagis®). This antibody is extremely effectiveat preventing serious illness secondary to RSV,” she said.
Preemies are often born before getting enough antibodies from their mothers to help fight RSV and other viruses. Preemies are also at greater risk for severe RSV disease because their lungs are less developed and their airways are narrower than those of full-term babies. Synagis® helps preemies by providing more infection-fighting antibodies to help protect their vulnerable lungs from RSV. The shots are effective for about a month, which why it′s important to get every single shot on schedule during RSV season.
   Jack was approved for the Synagis vaccine and he does get it. He did not get it in December due to complications from his cochlear implant surgery. He did get the shot right before we left the hospital.
He is a sweet little guy and all the nurses loved his little smile. He has been doing a lot better the last few days. The pediatrician was happy about how he sounded but he still needs multiple breathing treatments each day and he is still on the oral and inhaled steroids. It seems like it is always crazy around here.
































Friday, January 3, 2014

Jack's Cochlear Implants Are Activated!

It was a tough few weeks after the surgery. Jack had projectile vomiting, heavy bleeding from both ears and pretty serious balance issues. They said the vomiting and the balance issues are from the trauma to the middle ear. The bleeding seemed much heavier than it would be for the average cochlear implant patient because Jack has ear tubes so blood and fluid were readily able to drain out.
He still has slight balance issues but it has gotten much better. He can sit again now and he is not falling over anymore. I am pretty happy about that because we had so much therapy to get him to be able to sit so I was worried that we had lost it all, but he is getting it back again.
We set off for NYU for the activation with a pretty big blizzard on its way. I called to try to change the appointment but I would have had to wait 6 weeks and I didn't want to do that. We were supposed to have an appointment on Thursday and then another on Friday. They said they could squeeze it all in so that we could skip the Friday appointment.
We took the train in and they saw us pretty quickly. They showed me how to work the equipment. There is a lot to know. They showed me how to test it, assemble it, put it into the dehumidifier unit each night, change the volume, change the program set up, put it on his head, clip it on or use the harness, etc, etc. Finally we put it all on him and he responded to sound. I videotaped it but they told me I was not allowed to post it publicly.
They made all different kinds of noises to measure his responses. I think it was a bit overwhelming for him. Really I just wanted to say "hi Jack!! Mommy loves you!!!". I know he wouldn't understand it but I would have liked it to be just us.
They had two giant boxes of equipment for me and a big bag. I took the train and had the stroller. We packed what we could into the stroller and I left the rest for out next appointment which is on Friday January 10th. She packed up the processors for me to put in my backpack and then told me to be careful of them because they are worth over $20,000. And to think I was worried about someone stealing my ipad in the train station!
I walked back to the Penn Station and made it home before the blizzard started. Both Jack and I were tired and we all went to bed pretty early.
Julianna had no school today due to the snow. I put the processors on Jack and was able to talk to him here in our house with no one else. It was great. I videotaped a very short amount of it.
I have been told that, if hearing is a computer, Jack now has the hardware. The therapy he will receive over the next 3 - 5 years will give him the software. He really has to learn to hear with the implants. Right now he is being assaulted by the sound a bit. We all learn to tune out extraneous sound. For instance, we don't hear lights buzzing or routine traffic noise because we have learned to tune it out. We do that from birth. Jack has not learned how to do that because he hasn't heard since shortly after birth. So he has to learn how to tune out noise and how to make meaning from the sound. Also, Jack is hearing electronically and that is not how we normally hear. Most of the kids who get cochlear implants as early as Jack did do very well. They tend to be mainstreamed and attend regular school as early as kindergarten. I don't plan to tell Jack that he has any type of disability, just that he might have to work a little harder than most kids, so I am hoping he will excel. He is also going to have a lot of therapy to help him along.
Thanks for all the help and prayers!!! Here is Jack hearing! It is short but sweet!

video