November 17th- one-year after heart surgery

It's hard to believe that Lexi had her open-heart surgery exactly one year ago. And, she turned one on October 28th! Although there are still so many things she can't do, looking at how far she's come- from being near death (and that's not an exaggeration)a year ago, to cooing and kicking and even sometimes smiling, we are so thankful for every little thing that Lexi accomplishes. We are still praying and believing that she will gain full recovery from the complications of her heart surgery!

We went to Cleveland Clinic today for 3 appointments. Lexi had a reflux study this morning. They placed a die into her G-tube and then watched how her stomach emptied for an hour. Lexi did so well! She had to lay flat on her back wrapped in a papoose for an hour! She only cried for a few minutes the entire hour- she's a champ! We will get the results of the test next week. The GI doctor wants to make sure that everything is emptying the right direction and make sure it's not coming back up her esophagus.

We then had our first feeding clinic appointment. The team watched me feed Lexi and then gave us a new "routine" to follow for her feeding. This is quite different from what we've been doing and will definitely take a little getting used to. Lexi is also only gaining about 4 grams a day, which is about half of what she should be. So, they are trying to find ways for her to tolerate her feeds better and take more in each feed. Typically, however, when we've tried to give her more, she has severe reflux. Hopefully the study from this morning will give us some more answers to help her gain sufficient weight!

Finally, we met with opthomology for her pre-op appointment. Lexi's surgery is scheduled for this coming Monday, November 23rd. We won't find out the time until Friday afternoon, but it will most likely be in the morning. If everything goes very well, they may let her come home Monday! We'll keep everyone posted on the blog about the time and definitely after her surgery.

Lastly, we finally have an appointment scheduled with the neuro-surgeon in January. We will be very anxious to hear his thoughts as there is much debate about Lexi's symptoms and her chiari malformation!

Please pray for:
Lexi's upcoming surgery. Pray for wisdom and steady hands for the doctor. Pray that her eyes are not over-corrected, which would result in an additional surgery. Pray the her ride home and her first few days at home go smoothly as she is not to be jostled for several days!

Pray for the Hocanson family as Jon's grandfather passed away on Sunday evening.

Finally, pray for me, Lexi and my various family members that travel with me to Cleveland. We have at least one trip a week (with 2-3 appts per trip) from now until January 14th. We go November 23rd & 30th, December 3rd, 9th, 14th, 22nd, January 5th and 14th. Pray for safe traveling through the winter months and that Lexi and I manage the lengthy days away!

I hope to post some pictures from Lexi's first birthday this week so check back!!