Nothing New

I really don't have much to report. Alex had another busy morning of therapy and playtime. We also did quite a few art projects this morning. We capped off the morning with a visit from the therapy dogs. Alex has had some of these same dogs coming for the whole 3 years we have been coming to this hospital. It is always fun to visit with the dogs and their owners. Alex has napped over four hours each of the last two days.

Alex with his OT

Alex with Rio, one of his favorite therpy dogs


We were able to start a trickle (a tsp an hour) of water into Alex's Jtube last night and have continued it today. In the morning we will see what his labs look like, but he appears to be tolerating that little bit. We are happy for even these small steps as just 3 weeks ago this journey was about to begin and Alex was so very sick.

We continue to be blessed to be in a place that is filled with love. Alex is surrounded by people who love him and encourage him to be the little crazy boy they have watched grow over the last few years. He is hugged and talked to, played with and uplifted over and over again by this incredible staff. I cannot imagine being anywhere else where Alex would be able to thrive the way he has even with the amount of time we are in the hospital. I will forever be thankful to our "family" at Children's Memorial Hermann.

Ali

AAAAHHHHHHHHH!!!!!

Do you hear the screaming? That would be me yelling in protest! I just got word that they are not going to let us leave next weekend as we were told. All if Alex's main docotrs talked and feel like we need to make sure we have all the separate issues resolved or well on a path to being resolved before we leave. Because of this they are not ready for us to go home right after surgery. Dr. Koenig said at least another week beyond what we were thinking. I am tired of living out of a suitcase and wearing the same few outfits. I am ready to be home and back in my routine. BUT I love the fact that our doctors care enough about Alex to make sure he is well before we go.

Alex is doing well. He is loving his time with his OT. We are sad that he switches to adults next week. We also got to go up and visit the life flight helicopter this morning. The child life staff and volunteers have been incredible about playing with Alex and giving me a mental break. So we will continue marching one foot in front of the other. Medically, I really have no news from today.

The view of Houston from the helipad

Helicopter

Alex with life flight

Alex sitting in the helicopter

Thank you to all who have sent encouraging letters, notes, cards, etc.
Ali

Another Good Day

I don't know who had a better day, me or Alex. Alex's day was super busy and I got quite a break! Alex started the morning with OT once again. Alex really enjoys working with the OT here. They spent an hour together playing ball, doing legos, and coloring. He even gave Alex a homework assignment to complete by tomorrow. While Alex was in OT I got to spend girl time with my good friend Joy and her sister and daughter. They were in town from Dallas for an appt. After OT, Stacy came to do some more decorating of the room. They painted for a while. As they were cleaning up, a volunteer came in wanting to play with Alex. They headed off to the playroom and I did some laundry. Before they had even come back to the room, Dr. Koenig and Lakeesha joined the fun in the playroom. They were just leaving when Christine (the music therapist) came to do music. While they did music I got to go have lunch with Joy and Missy! Alex was laying down to finally take a nap when PT came in to stretch him and take him for a walk. They came back a little later to ask me if I wanted to help work on a 500 piece puzzle in the playroom. While I helped complete the puzzle, Alex played with one of his favorite volunteers. We did get in some quiet time this evening before ending the night with a puppet show. Bug is finally getting settled in.

Medically we are kind of in a holding pattern. Alex is doing well. We dropped one of the antibiotics today and are down to just two. We are just watching him for the next week. Assuming we have no more hiccups the plan is to go to surgery next Wednesday for a new port, an MRI of his spine, an SSEP and any tests that GI feels are necessary. Alex's ultrasound yesterday showed an enlarged liver. Today we discussed with GI his pancreas numbers and his liver enlargement. Our GI comes on service on Monday. At that time depending on his labs, we will determine if a closer look at either the liver or pancreas is necessary. The hope is that we can head home next weekend.

I am so thankful for the continued love and prayers we feel surrounding us.
Ali