Family first. Jason's parents drove up from Miami to spend a week with us. We had such a nice visit and they were a huge help to us as we transitioned back home after being away. They had their first date with Samantha at the DeKalb Farmer's Market followed by lunch at the Peachtree Dekalb Airport. It was special that they were able to be here for Alli's 1st birthday celebration. We were also joined by our South Carolina family, who have generously made so many trips down to visit us this past year. It is always nice to see them. And, of course, we were surrounded by close friends.
We waved (well, Jason waved) goodbye to his parents early Sunday morning, quickly changed the sheets and welcomed our Raleigh family on Thursday afternoon. The girls had a wonderful time with their cousins - Samantha enjoyed digging for worms with the boys, wandering around with them while they fished in the lake near our house, the Gwinnett Braves game, and her first trip to the aquarium. The boys were wonderful with her. It is always nice to catch up with them and we look forward to making our first visit to Raleigh in 3 years over Thanksgiving. It will be a full house, but full of love and lots of fun. We can't wait!
We waved goodbye to Raleigh Sunday afternoon, changed the sheets, and welcomed Gita (Jason's aunt) and Hella (Jason's grandmother) Thursday evening. It was such a special visit and we were so glad they were willing to make the trip down to see us. Samantha really enjoyed her time with both of them.
Ok - update on Alli. We have seen the following specialists since our return...Pulmonology, GI, Opthamology, Cardiology, General Surgeon, and of course, Neurology.
Our pulmonologist visit revealed that Alli's sleep study shows that she has both obstructive and central apnea. Obstructive apnea meaning there is something in her airway (usually adenoids/tonsils) obstructing her breathing during the night. Central apnea occurs when the brain doesn't send the message to the muscles that control breathing. So, it is more of a neurological issue, then an anatomical issue. We are addressing the obstructive apnea with a visit to the ENT in a couple of weeks. We are hopeful that removing the adenoids will address both issues. Alli will have a repeat sleep study 5-6 weeks post op to confirm. If that does not correct the issue, then she will need to wear an oxygen canula when she sleeps at night and takes naps.
Our GI visit resulted in a transition from baby formula to pediasure and a recap of our visit with the general surgeon regarding the placement of Alli's g-tube. We haven't scheduled this procedure yet because we are waiting on the outcome from our visit with the ENT. Assuming Alli will also need her adenoids removed, we are hoping to tackle both procedures in one visit to the hospital. My assumption is that this will occur sometime in the fall, once we can get the surgeons' schedules and the cardiac anesthesia schedule to align.
Our opthamology visit was pretty straightforward. The doctor is anxious for Alli to be weaned off of vigabatrin - one of the medicines she takes to control her infantile spasms. The medicine can cause retinal toxicity and it is difficult to evaluate her vision to determine if it is being impaired by the medication. As of right now, we know she is able to see and track objects.
We continue to make strides with cardiology. Alli graduated to a six month follow up appointment. While her branch pulmonary arteries are still narrow, they are growing with her and are sufficient enough for her heart to have good function. We continue to monitor the leakage from her pulmonary and mitral valves, which currently measures mild - moderate. Overall, they think her function is good and she can continue medicine free!! As we head in to cold and flu season we'll take extra precautions to ensure she is protected. Thankfully she qualifies for synagis again this year, which protects her from RSV.
Neurology is our nemesis. As many of you reading this blog can attest, Alli looks amazing - compared to how you have seen her over the course of the past few months. She is alert, vocalizing, rolling on her side, perfecting head control. She looks really good. In spite of that, she is still have seizures. Her 8 hour EEG resulted in me pressing the red button upwards of 50 times. Her seizures look mild compared to how they started. When she has one now you see a split second roll of her eyes and it is sometimes followed by a twitch of her shoulders or slight movement in her arms. This past weekend, we saw her seizures evolve in to something more significant. A call to the neurologist Monday morning resulted in increased medication. Since increasing her medicine, we haven't seen the more significant episodes. We are hopeful. We are also considering having her evaluated in a more specialized environment. It is becoming increasingly apparent to us that there are limitations within the neurology community in Atlanta (which, in all fairness, we were warned about at the outset of this journey - but were guardedly optimistic that maybe our experience would be different). At any rate, we are evaluating a center at Le Bonheur children's hospital in Memphis with a doctor that is a renowned specialist in infantile spasms - Dr. Wheless. We are also evaluating Johns Hopkins for implementation of the ketogenic diet and Boston Children's because, well, they are the best children's hospital in the country and rank #1 in neurology. Stands to reason that they might have some good neurologists there, as well. We'll see.
Amidst all of that, we keep up with physical therapy and feeding therapy. Alli graduated from occupational therapy last week. She will resume that once she gains more endurance and makes some additional strides in PT. Feeding therapy continues to go well. It is slow, but Alli is showing improvement every week. We are fortunate to have wonderful specialists working with us. PT is a struggle for Alli. There are times when it seems like she is moving forward and then it seems like we hit a plateau for what seems like an eternity. This is likely due to her spasms, but is frustrating for everyone involved.
The rest of us are doing well. Samantha has her meet and greet at school next week and then returns to her normal schedule the following week. I continue to work at UPS about 20 hours a week. Jason is doing well. Samantha is going through a daddy phase right now, so he's getting lots of extra love and attention from Samantha. Snickers is looking forward to the fall and some cooler weather.
Ok - off to watch the women's all around finals...too bad stupid CNN ruined the outcome for me earlier today.
