Cannon Boy

Quick Version:

Trips to Seattle have become a regular thing around here in the past few weeks. Cannon has pretty much been seen by every department at Seattle Children's Hospital now.

Neurodevelopment-result: extreme hypotonia/blood tests ordered

Audiology- result: normal hearing

Biochemical Genetics-more blood tests- results:high Lactic Acid & Pyruvate

Cardiology- EKG- results: normal

Radiology- MRI- results: normal

Surgery- muscle biopsy and skin biopsy scheduled for Sept 22

Anesthesia- consult and feeding directions for surgery

Ophthalmology- eye test and dilation- result: normal

Detailed Version:

We were first referred to Seattle because of Cannon's floppiness- or hypotonia. We were seen by an Occupational Therapist/Physical Therapist at Children's Village in Yakima. Cannon qualified for services so he will begin physical therapy in the next few weeks. From there we began our journey with Seattle Children's Hospital with a Neurological consult. The conclusion was that Cannon was developmentally delayed. In order to find the cause of the delay, he was scheduled to have an MRI and give blood for lab work. Here is Cannon sporting his "tough guy" arm band.

Since we had come to Seattle from out of town, every department has been wonderful to try and get as many appointments done in one day to save us the commute back and forth. It makes for some long days, but I think it is much easier than the alternative. The Neurological department also had Cannon do a full Audiology test to see if his hearing is compromised, or if his muscles are just to weak to turn his head towards a sound. After the test, we were told he has complete hearing of all tones in both ears. We also had the MRI done during this visit to see if any damage had been done to Cannon's brain, caused by the blood clot during pregnancy, to cause his delay. We didn't want to sedate him, being so young and weak, so we prayed our hearts out that he would sleep during the process sand they would be able to do it without anesthesia. The little sweetie was swaddled in his blanket and strapped to the board that slides into the MRI machine. He slept through the entire 45 minutes procedure. Results showed he was at a 4 month developmental stage, but with Cannon being only 5 months old and born 3 weeks early, the doctors decided it was a normal MRI scan.

While we were in Seattle last time the Biochemical Geneticist told us that Cannon's blood work came back irregular, high in Lactic Acid and Pyruvate with could suggest a mitochondrial disease or a chromosomal problem. He ordered a full genetics testing to be sent out. The wait time for those results is anywhere between 2-4 weeks. Yesterday was the two week mark so we should be hearing back any time now. Since the lab testing, Dr Merritt (the geneticist) has reviewed the amniocentis- done while I was pregnant- to review any chromosome abnormalities. After reviewing those results, he felt the amnio was a pretty thorough test, showing normal chromosomes. Dr. Merritt is now leaning toward a mitochondrial disease because of the high Lactic Acid and Pyruvate in Cannon's blood which suggests a problem with the mitochondria. He has requested a muscle and skin biopsy to confirm specific diagnosis and severity. Yesterday was another long day at the hospital. Thankful for the blessing of some wonderful friends, Kent and I were able to take Cannon to Seattle the night before so we would make sure to be on time for our 9 AM appointment with the Surgery Department. They checked his heart and lungs, his circulation and overall health. Cannon has had a cold for the last 9 days so we scheduled his surgery appointment for Sept 22nd to ensure his cold is gone. Cannon started out the day as a happy little Bubba, not knowing how long and tiring his day was going to be.

After the surgery appointment, we hurried from the 4th floor, up the elevator to the 5th floor, remembering that Opthalmology was on the 4th floor so we went back down and they directed back to the same door we were at for Surgery. Kent and I obviously are feeling a little distracted as our thoughts are constantly on finding a diagnosis. We made it to the eye appointment and Cannon was ready for a nap. They put a darling little eye patch on him and tested each eye, one at a time. His right eye was in normal range but his left eye was far below where it should be. The Dr. believes it is only because he was tired and they'll recheck it when he comes back to the hospital on the 22nd. Then they dilated his pupils and put his muscles to sleep so they could look for any eye problems that would help support the idea of a mitochondrial disease. After a thorough exam the Dr found no abnormalities that would suggest anything is wrong. We are thankful that his vision is good, but now we are more confused about what the diagnosis will be. His symptoms are not quite fitting with anything that we know of. Most mitochondrial diseases have seizures or feeding complications as symptoms, and I am happy to say Cannon has neither.

I don't know if you can see his dilated pupils...

After the busy morning, we ate lunch in the cafeteria, which had delicious carrot cake (it's worth mentioning...yum!). Then we went to our next appointment which was with the Anesthesia Department to discuss surgery procedures. With the concern of a possible mitochondrial disease, or muscle dystrophy, they requested and EKG be done on Cannon's heart to make sure it is strong enough to handle the anesthesia. We had to wait another hour before they could get us into see Cardiology so we went out the car and took a nap in the back seat. Cannon and I cuddled together zonked out until it was time for our next appointment.

By this point, Cannon was exhausted and did not want any more doctors prodding him. They hooked him up and got a heart scan and then pulled 13 little stickies off his poor little skin. As you can tell from this picture, he has had enough!
Four appointments later, we fed him one more time, changed him into a clean diaper and wrapped him in his new blanket that Grandma sent. Look at those tired eyes!

Snuggled down in his car seat for the 3 hour ride home