Back to "Normal"

On Thursday Elizabeth had her appointment with Neurology at Texas Children's. The Dr seemed happy with the progress she is making and feels that an MRI isnt necessary in January. He has recommended that we do a transcranial doppler study in April when we return for her 1 year post transplant evaluation. We know based on her Filamin A diagnosis that she may have some intellecutal/devleopmental delays but at this point we still dont know how much of her delays are caused by her just being so sick for so long. We will just monitor things and keep providing her with the best therapy possible here at home.

Houston to Atlanta Flight

Friday we checked out of the Ronald Mcdonald House and headed to the airport in Houston to come home. We got there super early to be sure we didnt have issues with security. Thankfully all of that went well. We were sitting at the gate playing with Elizabeth and her feeding tube got stuck underneath her stroller wheel. And her g-button got yanked out of her stomach. Needless to say we panicked for a second and then quickly got the supplies together to put it back in. She was pretty upset, which is to be expected when you get a ballon yanked out, she was crying and holding her breath so much that she started to turn blue and she started throwing up. We were finally able to get oxygen on her, calm her down and Matt was got the g-button back in place. She did well on the plane from Houston to Atlanta and then our flight out of Atlanta was delayed for about 2.5 hours. She got really upset when we first took off and again turned blue, we were able to get oxygen on her and calmed her down. She fell asleep for the 30 minute flight to Chattanooga.

Waiting at the airport

Saturday was Matt's Birthday. Since we got home so late and Elizabeth having the "blue spells" on Friday, I ended up not going to drill on Saturday and spent the day making sure she was doing ok. The Navy Birthday Ball was Saturday night and Matt and I felt comfortable leaving Elizabeth. My mom watched her for a few hours. This was the first time since being home that we have left her for more than an hour. I was pretty nervous but it was good to get out for a few hours.

Before Mom/Dad left for the Navy Ball

Last night we went to dinner with some of our close friends to celebrate Matt's birthday. Elizabeth was a little fussy/sleepy but overall she usually does really well when we go out in public. When we are home we usually let her lay in the floor to play/roll around. Last night for the first time Elizabeth rolled over. She was laying on her back playing and rolled to her side, she kept trying to get all the way over and finally she did ~ ALL ON HER OWN!! I was so proud of her. It really is the small things that are big steps for her! Seeing her do normal things and making such progress reminds me of how far she has come. 

  So for now we are back to our new normal. Elizabeth will continue with her weekly physical/occupational therapy appointments. We will still get her monthly labs/IVIG infusions at home. She will go within the next 2 weeks to get her flu shot and most likely the synagisis vaccination (for RSV). The biggest change is that we will become even more vigilant about germs, since flu/rsv season is here. Elizabeth HAS to stay as healthy as possible. We realize our purpose in transplant was to give her a chance at living and doing normal things. We are still working on finding "the balance" with all of this, we want to experience normal things like going places and being around family/friends but we have to limit her exposure to germs. I'm starting to think we should buy stock in clorox, lysol, and hand sanitizer :) We will be keeping them in business for years to come!!