Alex and Maddy

Alex and Maddy

Tuesday, April 26, 2011

Too Cute!

Alex lost his top tooth last night. It is too cute not to post pictures!!!

Monday, April 25, 2011

Still More

Pictures Galore!

Happy Easter

We have been so busy, but it has all been filled with fun! We have been soaking up time at home with friends and family and making incredible memories.

Grandpa flew in last Tuesday to be here for Easter. Alex always loves having Grandpa around. He gets so excited. Wednesday and Thursday we ran lots of errands getting ready for Easter and Alex's big Cub Scout banquet.

Those of you who have been followers of our story for a while know that we part of an incredible playgroup. WE have been so lucky to be with the same group since Alex was a month old. This week they once again proved what compassionate, loving women these mothers are. Alex missed our MOMS club Easter Egg Hunt last week with a low grade fever that I didn't want to turn into more. So Playgroup decided we needed ANOTHER egg hunt so Alex could participate. On top of that they made all of the eggs "no candy" so Alex could enjoy all the treats. Time and again, these women have made accomodations and changed plans so Alex could have the same experiences as everyone else. The love these families show for Alex is truly amazing and one the greatest blessings in our life. Obviously, the children share the same big hearts their Moms have. I was touched watching these seven best buddies during their hunt. They helped each other, shared eggs so everyone had the same amount and traded so everyone got some of each prize. There was no resentment, no hard feelings. Just friends looking out for one another. In Alex's life, there will never be another group where he feels like this. He loves the comfort of not having to talk about mito and not having to explain why he has tubes or why he doesn't eat. These kids know Alex for who he is and love every part of him. For me there is no greater gift.

Unfortunately the fun took a small toll as it usually does. We left our friends and travelled to have dinner with Aunt Ann and Uncle Oscar. Alex felt sick for most of dinner and wound up vomiting outside the restaurant. However, a little medication and a quiet day the next day and he settled back down.

Saturday night was a celebration Buggy had been anxiously awaiting! The annual Cub Scout Blue and Gold Banquet. It was another fun night with friends and celebrating the accomplishments of these boys who worked all year to meet acheivements to cross over to the next level in cub scouts. Alex has loved cub scouts and the new friends he has made. Although he could do without the paint at the ceremonies!

Easter was another funfilled day. We did not attend church because we have found that church usually equals the hospital. Alex always winds up sick. So we had our usual Easter Egg hunt to find the basket and then we packed up and headed to six flags for the day. Alex is definitely my boy as he loves rides just like his Momma! And my Dad was able to watch Alex some so Bruce and I were able to get on some roller coasters including the brand new Texas Giant.

I have lots of pics...enjoy!

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