Alex's Adventures: A busy few weeks!

Wednesday, March 19, 2014

A busy few weeks!

We are so busy these days...I always mean to update this blog and by the time I get around to it another month has passed! It doesn't seem possible that Maddy is almost 5 months old. We continue to be really busy with all of our fun extra curricular activities. Alex loves cub scouts, taekwondo, co-op and science class. Maddy has fun at her little sign and sign class. Add all of our medical appointments and homeschooling and our days are crazy!

Last week we were in Houston for a bunch of follow-ups. We were so lucky to have Mimi and Pop-Pop with us. I have always loved watching the relationship between my Mom and Alex grow. They love each other so much. Now I have the joy of seeing my mom fall in love with my sweet girl. It is such a blessing to watch. This trip was especially nice because Maddy is really blossoming. She has the sweetest little personality. She is smiling and cooing and just happy discovering the world around her.

Our first appointment was with Dr. Koenig. She was really happy with how Alex is doing overall. She did recommend that we discuss transfusing him with his hematologist here as he has some nagging issues that we think could improve with a little blood! Dr. K took a quick peek at Maddy as well and is happy with her development so far. We all agree the best thing in her case is to just watch and pray and not run any testing unless necessary.

Our next appointment was with Dr. Pacheco (allergy/immunology). She is also thrilled with how Alex is doing. SubQ IG has been truly life changing and we have all loved watching Alex spend more time out of the hospital. Dr. P and I discussed a plan regarding when and how to introduce solids to Maddy.

Endocrinology was a quick check in. Everything is status quo there. Same with the opthamologist. We also saw the dentist to set up a cleaning and x-rays to be done under anesthesia in May along with some testing for Dr. K.

Our final appointment of the week was with Dr. Jon (pulmonary). Once again Alex's pulmonary function tests have declined and are now at a scary level. Dr. Jon does not feel like we can sit and watch them decline any further. She is going to talk to the team in Houston and then reach out to Dr. Osuntokun here to try and come up with a plan to address the bloating that is impacting his respiratory status so significantly.

My Madelyn has also had us to the doctor a few times as we continue to struggle to control her reflux. Luckily she is still gaining weight and was 12 lb 4 oz at her 4 month checkup. Now if we could just keep her pain free! We also had to go for a PT exam. She has always preferred to look to the right side. She has also always slept with her head turned to the right. While we have been able to get her to look left when awake we can not get her to turn left in sleep. She has developed a flat spot and some associated issues. PT did an evaluation and sent us to a consultation for a band to help correct this issue. So soon my beautiful girl will be sporting a helmet for a few months!

I think that is it! I'll leave you with some pictures of my little sweeties!