Right after I last updated, My sister and nephew came for a visit. We had so much fun. It has been too long since we were together. When the kids were younger we always saw each other several times a year. Now with Skye in school and the struggle to travel with Alex, it just doesn't happen as often! The boys had a great time. We went to the zoo, the trampoline park and just had lots of play time at home.
After a quiet a quiet week, we geared up for another crazy weekend last weekend. On Friday, we were fortunate to once again be invited to watch the Fort Worth Air Show from the VIP area with Make A Wish. Alex loves our time with his MAW friends. Each event we attend, we become friends with more families. We are so grateful for the fun events they continue to invite us too!
The next day we headed out bright and early for our Fall Campout with Cub Scouts. We woke up to FREEZING temps. We packed lots of warm clothes, gloves, hats, etc and headed out. We got to the campsite set up our tent and Bruce and I sat to hang out with some of our friends while the kids took off to the woods to explore! Alex had a blast. He spent hours in the woods being a "normal" boy! It was one of the most fun days he has had. Unfortunately, he paid the price. By dinner time, he came to me crying in pain from his legs hurting so bad. We left it up to him whether to tough it out or head home, but it soon became clear that he couldn't do anymore. We took down the tent and headed home. One of the hardest things for me as a Mom is watching Alex pay the price for fun. It breaks my heart that evrery fun adventure comes at a cost. However, Alex and I wholeheartedly agree that we wouldn't change anything. Sometimes, fun is just worth it! I continue to be grateful for Alex's pack and especially his Den who support Alex and accept whatever he is capable of. They have been such a huge asset to our family.
This past week, we laid low. We did manage to have a great afternoon at the park with our best friends! We miss the days when it was easier to get everyone together.
This weekend, we once again joined our MAW friends for a fun adventure. BNSF invited us on a train ride complete with face painters, magicians, clowns, etc. Alex was just happy to have an afternoon to hang out with friends. While the adults enjoyed some fun conversation for a few hours.
Medically, Alex continues to do pretty well. We are once again struggling with some pretty significant Hypoglycemia. I am not sure that we can do anything different at this point, but Alex is tired of feeling "shaky". We have even seen some small seizures over the past week. We are getting ready to head to Houston next week for a few days (or possibly longer). There has been discussion about restarting TPN (IV nutrition) as Alex has lost all the weight he gained on it and is back to 40 lbs. I will not know until we get down there whether we will be admitted. But, we have appts Mon-Thursday anyway.
Thanks for walking this crazy path with us,
PS- Please continue to pray for Bruce to find the "perfect" job. He has had some good interviews and we are hoping an offer is right around the corner. We trust that God is holding us firmly in his grasp during these difficult times. We appreciate each of you that has reached out to us.