Last weekend Skyler received a package in the mail from her Grandpa. Inside this package was a St. Louis Cardinals hat & a pair of onsies (red & navy). Here’s the little photo shoot we had with her over the weekend to model her new clothes.

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Saturday, Skyler had a visit from her therapist for a physical evaluation. The therapist was so impressed with Skyler and how she can hold her head up. Skyler also showed signs that she can focus and follow sounds from a toy’s rattle. Mom learned a lot from the therapist and what she can do to further stimulate Skyler. In the following week, Skyler will meet the rest of her therapists – Physical, Occupational and Speech. We’re just happy that the therapists can come to our home and give her 1-on-1 private sessions.

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Busy Week For Skyler (UPDATE: 4/19)

Skyler has a busy week this week. Today we’re all headed to Tulsa for a follow up appointment with the surgeon that performed her G-tube & fundoplication surgery. It will be the longest car ride Skyler’s taken since her trip home from Tulsa. We’re confident that she’ll do just fine and hopeful that the surgeon will be encouraged by her progress. The scar on her stomach is barely noticeable anymore and by now the G-tube should be set in place.

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2nd Month Birthday

Skyler celebrated her 2nd month birthday on April 9th, the day after Easter. Mom entered her name in a raffle drawing at a local restaurant and it appears that Skyler is a good luck charm. The next day, Mom got a call from the restaurant and said that Skyler won the main prize — which is a giant 4 foot bunny. Honey Bunny was her Easter/Birthday present and the new resident in her little kingdom.

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It’s been a week since Skyler came home and we’ve been so busy caring for her that we haven’t had much free time to update the blog, until now.

So far things are going very well. Our little princess is such an angel and doesn’t fuss too much. The only challenge for us is keeping up with her scheduled medications and continuous feeds. We did encounter a huge hurdle a few days ago from acquiring her supply of enteral feeding bags. The bags were supposed to be sent via UPS straight to our home, but for some reason, they were never shipped. Luckily Skyler’s case manager from her first NICU was able to help us get 20 days worth of bags until our insurance company takes care of the problem…hopefully sooner than later.

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Today was a great day because Skyler is finally home.  We weren’t expecting this to happen yet since the plan has always been to transfer her to the hospital closer to us and then bring her home a few days later.  But she’s been stable for quite some time, has done a great job with the feeding increases (up to 19ml/hr now), there have been no problems with her G-tube and overall she’s as ready as she’ll ever be.

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