HUGE Maddy Update!

It has been a really fun and crazy few weeks. Mimi flew in on December 12th for 5 days. It was a short trip, but we had so much fun! Mimi got to spend so much time with the kids just loving on them. She got to really enjoy Maddy and see her spunky little personality. It was so nice for me to have a second pair of hands with my "Mama's girl" for a few days. For 10 years I have loved watching the incredible relationship grow between Alex and my Mom. They have such a special, close relationship. Bug will always be, Mimi's boy. It was so neat for me to watch the love and closeness grow between Mimi and Maddy this trip. We cannot wait till March!

The day after Mom left, Dad flew in! We are busy getting last minute things done for Christmas and cooking some of our favorite home cooked meals.

On to Maddy... On December 4th, during Alex's GI apt, Dr. O and I got talking about Maddy's size. he was concerned by the amount of food she was eating and still not gaining weight. He gave me some samples of a formula meant for kids with trouble absorbing and asked me to schedule her for an appt. Surprisingly, she started drinking the formula right away with no problems. We were able to get an appt 1 week later. So on the 11th, we had her first "real" apt with our GI. He was not happy with how far down the growth chart she has fallen and that she is not gaining despite adequate calories. he was really happy she was drinking the formula. He is concerned that she has malabsorption. He had us do some tests to figure out if that is what is going on. He also mentioned if the tests confirm his suspicion he will want us to rule out a disorder that has malabsorption and neutropenia as its defining symptoms.

However, incredibly once we started the formula Maddy made HUGE strides in Physical Therapy. Like leaps and bounds. Total 180! If you look back at my last update she really had not accomplished any skills. Two weeks after starting formula, she is now rolling back to front and front to back. She is CRAWLING!!!! She went from not even being able to maintain on her hands and knees to crawling!!!! She is still not weight bearing, but we are so hopeful that the extra nutrition will continue to help her improve.

The day Mimi was flying in, Maddy woke up with a fever. Per our protocol, I called hematology. we had to head into the ER. We were so impressed with the way Cook's cared for Maddy and so thankful for the well organized protocols hem/onc has in place. We never even stepped foot in the waiting room (they had us enter a back entrance). They started an iv, drew labs, gave fluids and a dose of IV antibiotics and we were home 5 hours later (in time to pick up Mimi)! We followed up with hematology this week. They are both happy and unhappy with how she is doing. overall, she is doing great. However, they would have liked her counts to come up higher with a fever. Her neutrophils went from 20 to 800 which is a huge improvement, but they expect/hope for them to at least come over 1000 (1500 and higher is normal). Unfortunately, her counts were back to 30 on Thursday.  In light of this response and some other inconsistencies with her original diagnosis, they are trying to get a bone marrow biopsy added on to her MRI in January. This is not a small feat considering her hematologist is in Fort Worth and the MRI is taking place in Houston! Luckily, we have some good contacts/doctors in Houston who are trying to pull it together.

I think that is all for now. We are hoping for a calm, peaceful end to our year!
Ali