Finally time for another Addi update. First off, she is doing amazing. Addi just keeps getting stronger and stronger and continues to show progress. The best news to report is how long Addi has been vent free. Addi has been off the vent for about 2 full months now! After she got discharged from the hospital back on May 2nd and we got her weaned back off he vent she hasnt looked back. She has been completely off the vent day and night since then. It is such a blessing not having her hooked to the vent and she is so happy to be off it as well. She is free and loves being able to explore. She is all over the place now and actually walking everywhere. She can stand up and start walking from any position now and loves running all over the place. She never stops moving. I think she feels like she has to make up for lost time of not moving around. She is seriously on the go all the time! Its so cute to watch her walk around. She is so little and her legs are tiny. Plus she kind of stumbles around a little wobbly but is able to keep her balance. Truly cute to watch! Other good news is she just got her port taken out last week. She had surgery on Tuesday to get it removed. Surgery took about an hour and went great although they did have to make two separate incisions to get it all out. Also recover from the anesthesia was a little rough. You would think after 9 other surgeries this would be one of the easiest but not the case. Addi was a little crazy after waking up for surgery. They called us in to try to calm her down but not much luck. They gave her some good meds but as soon as those wore off she was a mess again. So instead of going home Addi spent that night in the hospital to be monitored. She did fine and we got to take her home the next morning. The unique part about this hospital stay was for the first time since Addi was born she was not in the ICU! Addis entire life of hospital stays has been either in the NICU or the PICU. This time she was on the regular floor as just another patient! This was because she is no longer on the vent. When she was vent dependent she had to be in the PICU. Without the vent she was able to stay in a regular non-ICU room. Just one more milestone. As a matter of fact, Addi did not even need the vent during surgery even being sedated. She is done with the vent and never wants to see it again! We are so proud of her! So Addi is vent free, walking everyone, got some hardware removed this week, and just doing amazing! We even took her on her first mini vaca. Addi has never been more than an hour from home or ridden in the car more than an hour. Over the long 4th of July weekend we actually went to Branson for the entire weekend. Danielles dad and stepmom live/retired down in Branson so we traveled down there and spent the whole weekend hanging out with them. It was a big step traveling 4 hours away. Not only did we have to pack a ton of stuff for Addi, just in a case, but we also were a little worried about how she would do in the car for 4 hours. In true Addi fashion, she did amazing! She did awesome in the car and had a blast during our stay down there. It is so amazing what a difference a year can make. It was so fun getting away and both the twins had so much fun! There is only one thing that Addi is still struggling with and thats keeping all her feeds down. She is still throwing up at least 1 feed a day and some days are worse. She had a doctors appointment a few weeks back to check it out and they found that her paloric valve is not working quite right. This is the valve at the bottom of your stomach that opens and closes to go into the small intestines. The plan was to try some meds that may help first. Unfortunately Addi had an allergic reaction to the first med we tried. We quickly stopped it and now we are on to plan B, which is another med. We are starting it this weekend. If it works, great, if not we already have plan C. That plan is to go in with a scope to see exactly how the valve is performing and then use Botox to help the valve/muscles open and close properly. We are confident we will get this all figured out. Its pretty important cause Addi is still awfully small (21 1/2 lbs) and needs all the nutrients she can get. Plus we want her belly ready for that day when she eats real food! So other than this little road block Addi is flourishing and continues to amaze us! She is a little firecracker and really keeps us on our toes. Her and Conner love playing together now and there is never a dull moment around our house. We wouldnt have it any other way. We are truly blessed! Speaking of blessed, I want to say a Huge Thank you to some of our close friends! They recently had the third annual Angels for Addi garage sale fundraiser and we cant thank them enough. They put a ton of time and effort into this event and we are forever grateful. Thank you to all our friends and family for this amazing event! As always thank you for all the support and prayers we continue to receive. Addi is doing amazing, life is getting a little easier, but we still appreciate all the support and prayers keeping us going and on the right path. Thank you all again! Btw, guess what next month is?!? Thats right, the twins will turn 3 next month!! Can you believe it?!
Posted on: Tue, 15 Jul 2014 02:37:10 +0000
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