Update on Houston

Ten years....

For 10 years these incredible women have guided Alex's care. For ten years they have stood by our side. They have cried with us. They have laughed with us. They have stood by his bed in the PICU when we weren't sure he would make it through the night. They have shared in the joy when Alex has done well. They have fielded middle of the night phone calls and answered desperate emails. This has been a long journey and they have been by our side every step of the way. To say we owe our lives to them is not an understatement.

We headed to Houston with hopes that these miracle workers could wave a magic wand and make Alex feel better, but unfortunately they didn't have much more to offer then every one else. They were however able to change my perspective a little. They shared with us that six months ago they were once again fearing for Alex's life and his ability to survive to adulthood.   Now while he isn't feeling great he is in a better place medically. They have asked us to give his body a little more time. He is recovering from major GI surgery and they want to give his body time to adjust. So we really didn't change anything based on our visit.

For my Maddy Moo...I had two concerns going into the appointment. One was how often she is getting sick and the other is her constant complaint of leg pain. Dr. P let me know that she is not holding any of her titers from her vaccines, confirming other blood work that shows an immune deficiency, so we are starting the process of getting insurance to approve her for teh immune replacement treatment that Alex has been on since 2011. As for her leg pain, we will continue to monitor it and try and build strength through PT. When we head back to Houston we will see a rheumatologist to rule out arthritis. 

Please continue to pray for our family, specifically for Bruce to find a great job and for Alex to feel better.

Ali

PS- A few more pics from our trip.