Alex and Maddy

Alex and Maddy

Saturday, April 9, 2011

Another Busy Week

We have been so busy lately! Luckily lots of the craziness is full of fun. We once again hit the road for part fun/part work. The fun was first! The UMDF Houston chapter family meeting was held last Saturday in San Antonio. Missy and I wound up turning a weekend into it with the kids. Saturday we spent the day at Morgan's Wonderland. It is the world's first totally accessible park. What an incredible place. All of the kids had so much fun. There were numerous "playgrounds", a train, trucks the kids could drive, a carousel, a village with interactive sensory exhibits, and more. It was a great park that we will surely visit again. We left the park and headed down to the riverwalk for a boat tour and dinner. Alex and Lauren loved the boat ride. After dinner we headed to the hotel so the kids could swim before bed. The kids crashed and Misy and I were able to enjoy some good adult time. Sunday we decided to have some more fun before we headed back to Houston. We loaded the kids up and headed to the Natural Bridge Caverns. The caverns were like nothing I have ever seen. They were amazing and beautiful. The kids did great navigating the rough terrain while I helped and Missy got some beautiful pictures. (Don't worry, I will have these to post soon). After the caverns we headed next door to the wildlife safari. Where my little zookeeper proved true to form. He was not scared of any of the animals. Even the crazy Emu's that stick their heads in the car. The rest of us had our windows up, but Alex was squealing in delight looking for more! If that few hours was is a preview of our upcoming Make a Wish, Alex is going to have a blast! When we left the safari we headed to the Gristmill for an awesome lunch and then it was back to reality. Once we were in Houston it was time to gear up for a week of appointments. We were scheduled to have an appt with the ENT and a hearing test early Monday morning, but Alex was exhausted and I wound up cancelling it. Which left us with four appts: Neurology: I really didn't have too much to discuss with Dr. K. The main thing is that Alex has headaches daily. He has been complaining of them for months. Each time we have discussed it, we have decided to try and hold off adding yet another med, but at this point we have decided to treat him so we added a medication that will hopefully let him feel better. We also discuss the need for him to see the pulmonologist and have a sleep study. GI: Almost our whole app with Dr. N was spent discussing Alex's fluid needs and everyone's desire to get him off IV fluids on a nightly basis. Unfortunately, we crunched the numbers and it will be a hard feat to accomplish. However, we have a plan and know how we will attempt to accomplish this goal. We also discussed the need to test for pancreatic insufficiency following several more bouts of pancreatitis. Immunology: I had a great appt with Dr. P. We discussed a plan for when to give Alex IVIG to hopefully keep him healthier and out of the hospital. We also talked about the possibility of a new medication to protect his liver from further damage. LAst, we discussed using ethanol locks in his ports to kill any bacteria that could be there. Endocrinology: Dr. R is very concerned about Alex's blood sugars. Over the years he has numerous occurences of extremely low blood sugars and has shown us that he does not have the ability to hold his sugars for any amount of time. While Dr. R thinks this is most likely due to his mito and his damaged liver, he does want to run some labs to make sure we aren't missing anything. We are also contemplating putting him on a continuous glucose monitor that would check his blood sugar every ten minutes and alert us if it was too low or too high. On a bright note, he was very happy with his growth. His height is in the 8th percentile!!! So all in all, a good informative set of appts. We made it home without incidence and are just working to get back into our routine. We have continued to work with our physical and occupational therapists who are such an important part of our family. They have both been with us for years and are friends and caregivers that we love dearly. Alex is also working with a new psychologist who we really like and are making some progress with. We are hoping to alleviate some of his anxiety and OCD and also to help him work through his grief regarding Samuel's death. As for our family there has been good and bad....The good is we continue to find joy in "regular" activities. Today we once again headed to Six Flags for a good time. Alex is loving the rides and it is something we can all do and enjoy together. As for the bad, Bruce's car has finally thrown in the towel. It is a 1998 Honda and has over 250,000 miles on it. We were pretty concerned about how we were going to find a car for Bruce, but once again God showed his hand and we have found a car to buy that is affordable. I continue to think surely there will be a day without any "bad luck" for us!!!! Please pray that Alex can stay healthy and we can have some quiet time at home! Ali

1 comment:

  1. Sounds like you guys had a fun trip and some helpful drs appts. :)