---1---
Last Sunday, Tennyson woke up with a cold. I hate when she gets sick. It's never just a simple cold. It hangs on and she gets congested and she's just plain miserable. I grabbed the sodium chloride and nebulizer as soon as the runny nose started. If you remember, a cold she caught last May, landed us a 3 day stay in the hospital. I kept her out of school last week and took her to the doctor on Friday to get antibiotics. She seems better, but still has a cough. Hopefully she is just building up her immunity for the upcoming cold and flu season.
---2---
On Friday, she also saw her cardiologist. We have not visited the cardiologist since she was about 15 months old. At that time, she was being followed to monitor a patent foramen ovale (a hole between the upper chambers of the heart that doesn't close soon after a baby is born). Once the PFO resolved on it's own, we thought we could cross cardiology off the long list of doctor appointments. We were wrong. Unfortunately, the micro-duplication on her 19th chromosome puts her at an increased risk for heart complications due to the genes that she has extra copies of. She needs to have a yearly echocardiogram to monitor her heart. During the ECHO on friday, the results were normal. Her heart is functioning normally, and the anatomy is all normal. The only caution is that the thickness of her heart is on the high end of normal. She will have to be monitored to make sure she does not develop hypertrophic cardiomyopathy.
---3---
I ordered a Pumpkin Pack for Tennyson! These are adorable backpacks that are modified to hold feeding bags and pumps. I've been sending Tenn to school with her pump in a lunch cooler, and I hang her feed bag on the back of her adaptive stroller. Sometimes it works fine, sometimes it doesn't. The extra tubing is a pain to wrangle. This will hopefully make everything easier. Her pump and feed bag will be held in the pack. I had it monogrammed with her name on it. I'll let you know how it works out for us when it arrives. I've heard nothing but good things about them. I'm pretty excited!
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| Image courtesy of Pumpkin Packs (www.pumpkinpacks.com) |
---4---
We are planning on banking the cord blood from Baby #2. Our hope, (as long as Baby #2 doesn't need her cord blood), is that Tennyson can use it. We were not able to participate in the current clinical trial at Duke because we didn't bank Tennyson's cord blood. Hopefully, a clinical trial involving sibling cord blood donation is coming. We will continue to pray this is an option to help Tennyson in the future.
---5---
Remember last January when Tennyson got a lumbar puncture to test for cerebral folate deficiency? (and the super emotional post that followed when we found out she was going to be treated for it?) Other than some increased awareness and head control, it didn't bring the results we were hoping it would. It's understandable - medically speaking, Tennyson has a lot going on. We're going to increase her dose of leucovorin and see what happens. We have another medicine that we can try as well, to see if that shows better results. We are also looking into traveling to Atlanta to visit a clinic that specializes in treating cerebral folate deficiency.
---6---
Tennyson has a new favorite activity: drinking water. She loves it! It has taken her a long time to get to this point. She is beginning to lose the oral defensiveness, and loves to try tastes of drinks, broths, and purees. Though her favorite - by far - is water.
---7---
We started Tennyson on a 3rd seizure medicine about a week and a half ago. The new medicine is called Clobazam (aka Onfi). It will take month to titrate up to the full dose. We are going slow in order to minimize the sleepy side effect if has on her. So far, I'm pleased with it. I've noticed a significant decrease in her seizure length and frequency. She had started to seize frequently when waking up from her afternoon nap and when I put her in her carseat. Since we started the medicine, she has not had a single seizure when waking up from her nap. She has had 2 seizures from the time we began the medicine, but she is not at the full dose yet, so I'm not disappointed.
Amy
tennsense@gmail.com
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