Yet another surgery

Well Amarie is under the knife once again. She is getting a feeding tube put into her belly today. This procedure only last around 8 minutes so it should be a little less stressful. They will observe her for at least one night, maybe two if there are no unforeseen complications. We are of course nervous and concerned but we trust that God has her in his hands and will take good care of her. Thank you for all your prayers and kind words. We will post another update when she gets out of surgery.

-Jason Orean

Amarie has had several follow up appointments this week that have gone really well. We went to the craniofacial doctor on Tuesday and they took out the distractors (the metal pins sticking out of her head). We are excited about having her little "antenna" out :) We also went to the hematologist this week (Scottish Rite is our home away from home!). They repeated the CT scan of her brain and the blood clot/bleeding is gone!!! We are thanking God for her improvement. She had some blood work done to see if she has a clotting disorder before she gets another surgery in two weeks (to put the feeding tube in her stomach). Poor little thing has been picked on a lot this week between getting her shots, blood work, CT scan, and putting her feeding tube back down after it came out again :( She's going to be a tough cookie! She is so alert now and loves to look around. Such a cutie!

Swallow study (other update is below the pics)

We had the swallow study yesterday and it went pretty well! We were pleasantly surprised :) She aspirated only once (where the liquid went down her airway instead of into her stomach) when they were using a faster flow nipple. Using the slow flow nipple she had improved a lot since the last swallow study. Yay!! She still needs a lot of practice and time to get it down but we are encouraged that there was improvement. We will have a speech therapist (they also work with swallowing) that will be working with her through the Babies Can't Wait program so it will be great to see how much she will improve with lots of practice. Also, the therapist that did her swallow study said that she thinks Amarie will do great with baby food since it is thicker so she will be able to eat that once she gets old enough. She still needs to have the surgery to put in the G tube (tube in her stomach instead of going down her nose) since it will take time for her to work up to get her full feedings from the bottle. The G tube will be more comfortable for her (and it will be farther away from her sneaky hands!). Her surgery (if we can get the ok from the doctors following her blood clot and brain bleed) will be June 22nd and we will probably spend a few days in the hospital..so we hope she tends be a little complicated!! :)

My favorite spot...mom and dad's bed

Pictures (update below the pictures)

With cousin McKenna

Going home from the hospital

Its late...I'll post more pics tomorrow...promise :)