Medical Update

Wow, what is the date? I can't believe it has been over a month since my last post. We are busy at the Goley house! This week I have been schlepped around the Boston area to multiple doctors and specialists, being poked, prodded and evaluated. Luckily, I am a pretty easy-going, roll-with-the-punches kind of guy. Here is a recap of what is going on with me medically. Some may feel that it is TMI- but this is the reality of my life and what kinds of conversations are taking place regarding my care and progress. And, we're off!

GI (gastroenterology) update- It is no secret that I don't have a need for fad diets and weight loss videos, but in fact, struggle to keep on the pounds. I know, I know, you wish you had that problem ;-). I have never even been in the 1st percentile of the growth chart, but have been slowly following my own curve since birth. Some of you may not know that I had a g-tube (surgically inserted into the stomach so you can tube feed through a port) placed at about 2 weeks old so I could eat. I had no suck or gag reflexes so I could not eat orally. Luckily, after about 1 month of being home I was able to start eating and then got the g-tube out when I was 6 months old (sometimes my mom regrets that decision). So now, I eat pureed foods made by Chef Mom. She's not a bad cook- but more variety would be nice. We put lots of things in my food to help me gain weight, like: cashew butter, coconut butter, regular butter, avocado and Duocal (a calorie supplement that is essentially modified corn starch - which makes my mom cringe every time she adds it). But alas, I struggle to meet my weight goals because my muscles are constantly contracting and working all the time.

Sleeping in my big hotel bed!

At this last visit to see Dr. McSweeney (GI doc) I gained over a pound in 3 months! I now weigh 35.49 lbs. and am 42.5 inches tall. Mom and I were so thrilled! The doc was not as excited (she's new- we won't hold it against her). She would like to see me get on "the chart" so I have a little "reserve". So, here we go- upping the Duocal and feeding me like a spring chicken!

I also suffer from reflux and chronic constipation. Not fun. But, we are managing it and I am comfortable most of the time.


On Tuesday night Mom and I drove up to Boston to stay in a hotel. We had appointments all day on Wednesday, starting at 8am.  We got to snuggle and watch TV together. I think hotel rooms are pretty cool.

Waiting for eye exam

Vision update- I met my new ophthalmologist today. Her name is Dr. Fulton. She is a kind, older woman, who is very soft spoken. She knows my previous ophthalmologist from California. We did all kinds of crazy tests and evaluations. First we did a VEP test which hooks my brain  up to a computer and then has me look at a computer with stripes across the screen- the thickness of the lines change with each trial. By doing this they attempt to quantify my vision. Today I showed some improvement- 20 over 130 (technically legally blind, but I can really see). Then they put drops in my eyes to make the pupils really big- that felt weird. They took pictures of my optic nerves too with this cool camera. Then the optometrist, Dr. Bagliere, evaluated how well my eyes work. She said they work great! No need for glasses. So you may be wondering how I am legally blind, but have no need for glasses. Well, I have something called CVI (cerebral visual impairment). That means the processing of visual information to my brain is impacted. So, it is hard for people to know exactly how I see.  Over time, this will hopefully improve as I gain more experience and put meaning into the world.

For the next appointments at the CP (cerebral palsy) clinic, my Dad was able to come along. After getting Liam and Addy off to the babysitter he drove up to meet mom and me.

Waiting for Dad

Pediatrician- We spent about 1.5 hours with Dr. Davidson. She was a very thorough doctor! She had lots of ideas for mom and dad to help me out. Now we have lots more appointments to go to! We got ideas about supplements, toilet training, fun things to do in gym class and some resources that will help mom and dad out.

Neurology- Next we met my new neurologist. He is there to help manage my seizures. Yep- they're back! As a baby I had infantile spasms, which are a type of seizure that occur many times a day (the highest day my mom counted was 89). Once those were treated I stayed on medication until I was about 2.5 years old. Then I no longer needed it. Unfortunately, 70% of people with infantile spasms will develop seizures later in life. Mine started again last October, right before I turned 6. After a few episodes (two of which were pretty scary with trips in the ambulance), mom, dad and doctors decided I needed to start taking medicine again. I've been doing great, but then I had another few episodes two weeks ago- 2 were even at school! Most of my seizures are described as generalized tonic-clonic, and they occur mostly related to sleep. Mom and Dad record me overnight and watch the video the next day to see if I had any seizures. I do not make much noise so Mom doesn't wake up. It is a little scary. We are looking for some kind of monitor that would have an alarm if I started having a seizure. In the meantime, I have to increase my medication. The neurologist mostly manages my meds. I take 3 main things for seizures and muscle tone (mine is really high). We talked today about something called a Baclofen pump. Baclofen is a medication I already take, but it has side effects. With the pump, a little machine is put into your back and a tube delivers the medication directly to the nerves to help calm them. Then you go in every few months for a refill! You don't have the side effects since the rest of your body does not have to process the medication. Of course, putting a pump inside your body has it's own problems. The doc said I am probably too small yet for the pump. I think mom was glad about that for now.

Dad distracting me from the orthopedist

Orthopedics- Our last appointment was with Dr. Shore. He is a pretty cool guy. He gets to look at how my bones and body work together. He is responsible for all of the new braces and equipment I am going to get. We always have to get x-rays for the orthopedist- of my pelvis and spine. Because I don't stand and walk very much, my hips are at risk of not forming correctly and eventually dislocating. NOT FUN. A few years ago I had a surgery to help with this issue- and it has been a great success so far. But for now, I still need to do a lot more standing and walking. I am going to get some new AFO's (leg/ankle braces that help keep my feet flexed, since I tend to point them), some hand splints (to keep my thumbs out), and some type of body vest (it will help my torso be more stable). He and mom disagreed a little bit about the AFO's, but they came to a compromise in the end.

Sitting in traffic watching Beauty and the Beast

By the end of this appointment I was TOAST! Nothing was going to make me happy and I wanted to go home! There was a lot of traffic, but mom got us home in just over 2 hours. After this full week, these are the new appointments we need to make:
- functional vision assessment
- augmentative communication clinic
- PT equipment clinic
- Orthodontist
- Audiology test
- Movement disorder specialist
- fittings for 3 new braces
- Physiatrist

And of course, follow-ups with all of the people we saw today!

Tomorrow a nurse is coming to our house for more evaluation of me! I feel so special! Can't wait to go on vacation to Florida next week, I can barely handle the spotlight!