Brain wave monitor?

Are there a number of small children going around wearing brain wave monitors that look like cochlear implants? I wasn't aware that such a thing existed. When Noah's brain waves were monitored they covered his head in a bunch of wires, sand, lemon juice, and gauze. A CI shaped monitor would've been so much easier! First there was the woman who very knowledgably pointed to Noah's CI and said "That's one of those brain wave monitors" to the general public in a doctor's waiting room. She started to explain all about it, but I missed out because we had to see the doctor. Later we met the "He can't come through the metal detector or his brain will stop" airport security gaurd. Today we met the "That's a cute monkey sticker on his brain wave monitor" woman at BJs check out. The best part was when I said "It's a cochlear implant. He's deaf" she nodded knowingly and said "That happened to a little girl at my church. She had to get tubes." Yeah. Ok. Seriously, though. Is there such a thing as a brain wave monitor that looks like this?

I'd hate to continue thinking these people are crazy if I'm just uninformed.

Because a little bit of Noah is never enough!

Notice that Noah is continuing to sign and say "baby" throughout the video. He really wants to play with his baby (doll) rather than read a book, but daddy just doesn't get it (or else chooses to ignore it).

Pulmonology

Today at our pulmo appointment the amazing nurse practitioner Molli was being followed by a medical student. She proudly announced that she had the medical student read Noah's entire medical history and case file because he was such an interesting case. The medical student just gave a very weary half smile (in case you didn't know, Noah's medical history and case file consist of boxes full of paperwork and numerous CDs of x-rays, MRIs, ultrasounds, etc.). Poor medical student! She got to help with the history today and asked informed (although niave) questions such as "Has he been to the audiologist recently?", "Are his teeth still green?" and "Will you be continuing in feeding therapy?". I like most medical students. I have much more patience for them than residents who should at least have a bit of a clue about things. In any case Molli (and the medical student) have deemed Noah's lungs "beautiful" and Molli decided not to increase us to twice a day Pulmocort for the winter as was the original plan because he's doing so well. Here's hoping Noah's lungs stay beautiful until spring!

First Blog Video

My adorable little boy is showing off some of the words and signs that he knows. If it works, that is.

Happy Hearing Birthday, Baby Michael!

Noah was almost a year old when he got his first hearing aids. Fortunately little Michael got his much younger. We hope you enjoy learning to listen!!

So Sad

Dear Preemie Magazine Readers:
Preemie Communications, Inc., the parent company of Preemie Magazine, regrets to inform you that the company has officially shut down and is undergoing bankruptcy proceedings. This is an unfortunate outcome for such a promising community, but a necessary one due to the inability to attract new owners/investors to cover expenses and debts. The company is truly saddened by this turn of events, but would like to thank all our readers and supporters for helping us fulfill our mission in educating so many parents and professionals in the preemie community over the last two years.
Respectfully,
Preemie Magazine/Preemie Communications, Inc.

You know you need a vacation when...

You know you need a vacation when your child vomits his entire breakfast in the toy box and you consider:
a. throwing everything away and buying all new toys
and
b. pretending you don't notice until your husband gets home from work 7 hours later
until you choose
c. dump the whole thing in the bathtub and turn on the shower (if it's not washable it's not worth saving anyway)

Only 2 weeks and 6 hours until we leave for Houghton! I'm going to go here and here and maybe even here.

A Letter to the Deaf Community

Dear Deaf Community,
My son is deaf, I'm not. I chose to have him implanted with a cochlear implant at 21 months old because I wanted him to be able to communicate through spoken language. I don't hate the Deaf culture or want to keep my son from his deaf identity. In fact, I spend a good deal of time trying to find opportunities to learn more about Deaf culture. I've exposed my son to sign language from infancy and he is able to sign a few words. He's by no means fluent in sign, nor am I. He has significantly more spoken English than signs. You see, my son is also visually impaired. Does that make him less deaf? Deaf Awareness Week is fast approaching and I would like to take my son to some Deaf Awareness activities. When I look at various sites I find silent suppers. I can sign eat and so can Noah. We also know banana, cereal, thank you, and more. Does that mean we can come? Or will I be shunned because I don't know enough sign language? Will my son be shunned because of the magnet in his head? I think that it would be a beautiful thing to go to a Deaf theater production. Would I be lost because I can't sign enough? Would people glare at me if I spoke to my husband during intermission? I have also read about protests planned at places that support Auditory Verbal Therapy or AG Bell. My son goes to AVT every Monday. If I protest in front of his therapy center will that make me a better parent of a deaf child? Will it help my son to better understand what it means to be deaf? You see, my son will always be deaf. Even with a cochlear implant and spoken language. You understand what that is like, I don't. I wish that the Deaf community would embrace hearing parents of deaf children. I want someone to help me explain to my son that it's ok to be different. He might believe you because you know what it's like to be different too. Unfortunately all too often I find the Deaf community judgemental of hearing parents. We're bad parents because we want our children to hear and speak. Is that an unfair statement? Is it wrong to want my son to be like me? You teach your hearing children to sign, don't you? I don't want my son to be unkind to people who make different choices than what he would make. Does he have to be like that to fit in with Deaf culture? Please help me to understand.
Sincerely,
The hearing mother of a deaf child

I win!

or not?


What do you think?

I was just kidding about the duct tape!

There was a time last year when so many things were attached to my child that I was known to comment that it would just be easier if I wrapped him in duct tape each morning so that I wouldn't have to reattatch the cannula, leads, pulse ox probe, eye patch, and hearing aids again and again. I never actually resorted to duct tape, although as you may or may not be able to see in the picture a little extra medical tape went a long way in keeping the eye patch where it belonged. We went to the opthamologist today, and I think I may have to start thinking about duct tape again. It looks like Noah will need glasses. Glasses will not help Noah's ONH & nystagmus, but they will help his worsening nearsightedness. We're waiting for now, but Dr. W. said to expect them at the next appointment (in 9 months) and if not then, certainly at some point before he starts kindergarten. That means I have 9 months to find a solution to keeping a cochlear implant and a pair of glasses attached to my son. At the same time. Without interfering with each other. Duct tape is looking really good!

Disappointment

Story Hour for the 0-2 crowd is discontinued this year at our local library. I've been waiting 2 years for Noah to be healthy enough/less likely to vomit for story hour and now they've cancelled it.

Noah's first two year molar finally broke through the skin, as evidenced by a hole with a lovely green tint showing through. I was really hoping that his 2 year molars would be completely white. Now I'll have to wait 5-7 years to find out if his adult teeth are casualties to his preemie experience too.

We brush them, I promise.

I never thought this day would come....

As of today's weekly weigh in, Noah is officially on the charts for his actual age. That's right, not his corrected age, his actual age. Wow!

Good Mommy Award

A few months ago I wrote this post about a time that I was a bad mommy. In general I would say I'm not a bad mother. In fact, there have certainly been times where I should get a special commendation for going above and beyond what most mommys have to do. Not that the rest of you wouldn't do it, mind you (and some of you have). Anyway, here are some of the top contenders for my "Good Mommy Award".

1. I almost died so my son could have a better chance at life. Typically iminent liver faulure is a reason to deliver ASAP, but I held on long enough to get a full round of steroid shots.

Don't those lungs look healthy to you? Just think how bad they would've been!

2. I drove 2 hours each way every day to visit my son in the NICU for the last 4 months of his hospital stay. For the first 2 months he was only 40 minutes away, but even that deserves an award.

3. I chose an outfit for Noah to be buried in when he was 2 months old. We were told he would not live and we had come to grips with that. I think sometimes the most loving thing you can do is being willing to let go.

4. I've "helped" with things that would make most people more than a little uncomfortable. I've held my son's head still so his vent could be retaped, his PICC line could be retaped.... pretty much anything that his devious little hands could reach I've held him still or taped it down. I've watched retinal exams and my son's hernias being reduced. I held the C-PAP on for an hour when my son was extubated the first time because it didn't fit right and kept falling off.


5. I stick a magnet to Noah's head numerous times a day. He pulls it right back off again, but I just do it again (and I rarely complain about it).

5. I learned how to insert an ng tube. I did it more than once even though it made me cry afterwards each time. I did it because having Noah home was more important than my comfort zone.

Can you blame me for using all that tape?

6. I've spent the last 2 winters stuck in my house to keep my little guy from getting sick.

7. I picked out 4 different "coming home" outfits for my son. Ok, so that was fun. But each time he came home meant he had been back in the hospital again - that wasn't so much fun.
I'm kind of partial to #2.

8. Every day I say "take your bite" at least a million times. I clean up vomit 1-2 times a day (sometimes more, but never less). It will be years before my son eats normally, but I haven't given up.

Ok, so what do you think? Is my award in the mail? All too often I think moms (preemie moms especially) focus on the few thinks they think they've done wrong rather than all the things they do right. So lets hear it. I want to know why all the rest of you deserve "Good Mommy Awards"!

Busy

Why is it that all the doctors want to schedule their follow ups at the same intervals? If I were a doctor I would ask my patients to come back and see me in 4 months or 7.5 months. It's always 3 months or 6 months and that means that every 3-6 months my life gets hectic. Not that it's not hectic the rest of the time, mind you. But every 3-6 months I have to drive to Richmond on an almost daily basis. I have to find my way through endless construction detours so many times that they don't seem like detours anymore. I have to pay so many fees in the hospital parking garage that I start to think about getting a monthly pass. A normal month for me consists of one audiologist visit, one OT appointment (at least she comes to the house!), 4 ST appointments and 4 FT appointments. That's only 9 trips to Richmond or to think of it another way, only 18 hours driving to Noah's appointments each month. This month I get to add to that an appointment with dermatology, opthamology, pulmonology, otolaryngology, and if we ever remember to call for a new appointment endocrinology - 28 hours in the car. It would be nice if I could "double up" appointments so that I had more than one each day I went down to Richmond. That has worked really well for me in the past. But alas this month that didn't work out. Perhaps I should be thankful that this only happens once every 3 months? Perhaps I should be happy that we're no longer followed by neurology, nephrology, urology, and surgery? I'm just thankful for cruise control, air conditioning, strollers, and a 2 year old used to amusing himself in waiting rooms.