We survived the road trip!! A special thanks to the wonderful people who invented the portable DVD players! I could probably recite “The Little Mermaid” word for word. Christopher watched it over and over in total amazement. He laughed and really enjoyed it. The moment it would end, he would start to fuss. We would hit the play button and almost immediately would calm down. He is not a TV kid. He sits through movies in a theater because it’s big, loud, and dark, but doesn’t usually sit through any movie at home.
Minnesota was great. The weather was beautiful. Can you believe my kids survived 9 days without phone or TV? They had to use their imagination and play! We went out on canoe rides, spent time with family and got very good at playing crochet. Stephanie learned how to knit and I actually got to read a book!
After MN, we went to the Hunter’s Hope symposium. Our home away from home. We spent time with all our old friends and met a lot of new ones. It was so good to see everyone, we cried, laughed, and shared our stories. It was so great to see the kids growing and terribly missed the sweet angels that flew to Heaven. Michael and I definitely plan on planning a fundraiser to help support Hunter’s Hope and their Newborn Screening campaign. Even though Alexander’s Disease cannot be tested, it is so important for every kid to be tested for everything possible. No child needs to endure any suffering because of what state he/she is born, especially if there is a possible cure.
Christopher has been doing very well since we’ve been back. He absolutely loves his nurse and she’s really great with him. We can’t wait for school to start so that he gets time with his friends and teachers. We really haven’t taken him out to swim, which he enjoys, but since he is so thin, it’s hard for his little body to warm back up. Even after we take off his wet clothes and wrap him with dry, warm towels, it takes a long while for him to stop shivering. At the end of the month, we’ll be meeting with a cardiologist; just making sure his little heart is working well. We’ll also go see his GI. We are still having trouble with his feedings, so we’ll ask about a different formula and possible go to pumping at night. He hasn’t gained any weight in over 18 months, if not longer. He hasn’t lost, but I’d like to see a bit more meat on his body.
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