Avery

G-tube Operation

Avery just had surgery yesterday to have a g-tube installed. Thankfully, the surgery went well, and despite some complications afterwards, he seems to be recovering. Oriana, as always, deserves the medal of honor. She is putting in the work of loving and caring for Avery over the next days in the hospital (and weeks in […]

18-Month Avery Update

It has been over four months since the last Avery update, which was when we left Tubingen, Germany. A lot has happened in that time! In the couple months following our time in Germany, Avery’s medications changed continuously. He went completely off of his seizure medication (topiramate) and we gradually increased the experimental medication (4-AP). […]

We’re going home today! Avery and I left the Ronald McDonald house at 6:30am to catch the bus to the Stuttgart airport. We arrived with plenty of time. Security was being picky and they took away my ice packs that I use in a little cooler to keep Avery’s milk and food cold when we […]

Today was a whirlwind of a day. Two trips to the hospital, two trips to the pharmacy, cleaning, and packing. In the morning, Avery had his EKG and then we met with Dr. Wolff. Avery’s QTc was 405, so again, he’s in the normal range. He asked what my decision was regarding the anti-epileptic medication. […]

Tubingen - Wednesday, March 29 & Thursday, March 30

Wednesday: Since Avery went to bed late last night, he slept in late too. We had a slow morning and then went to town in the afternoon to run last-minute errands and have lunch/dinner. Thursday: This was the hardest day of the trip so far. At 3am, I woke up to Avery breathing in a […]

This morning was the day for free breakfast at the McDonald House. We filled our stomachs and then went to the hospital at 9am. I wasn’t sure what time the EEG and EKG were going to be. Once there, they informed us that at 10am we would meet with the nutritionist, then Dr. Wolff, and […]

Tubingen - Saturday, March 25-Monday, March 27

Over the weekend, my mom, Avery, and I did a little exploring. On Saturday we visited the Bebenhausen Cistercian monastery and palace. The castle was nothing amazing, but much of the original furniture and decorations were there to see. Along the walls hung numerous deer heads and other animals. The kings of Wurttemberg sure loved […]

Tubingen - Friday, March 24

Today was another full day at the hospital. We got there at 9am, and soon after, Avery was called in for his EKG. He did great. He was calm and still. Then we went over to the EEG department and without much wait, they got him ready for his EEG. My efforts to get him […]

Tubingen - Wednesday, March 22 & Thursday, March 23

The last two days have been pretty uneventful for Avery. It’s mostly a good thing at this point. He is currently on half of his normal dose of topiramate and has slightly increased 4-AP. We have not seen any seizures, and we have not noticed any significant change in behavior (good or bad). Avery has […]

Tubingen - Tuesday, March 21

Every Tuesday the McDonald House has a free breakfast for all the guests. It was a typical German/European breakfast with breads, cheeses, meats, yogurt, muesli, fruit, and eggs. We had about a half hour to eat and then we needed to be at the hospital to meet with Dr. Wolff. Today’s appointment with Dr. Wolff […]