Wow - so much has happened since my last blog post. I will apologize in advance for this being long. I realized this past week that some of you reading this have never met me... I think most people would agree that I am a "talker" and I have to admit I can talk about anything to anyone for any amount of time most of the time, lol. Let me just say that I don't waste cell phone minutes :) and I tend to write how I talk so sorry if you're wishing I was more "to the point" about things. I tend to go off on tangents, but I promise I will try to get back to the original point and hopefully not bore your pants off in the process.
Okay, first off, we had a GREAT Easter! Skylar got to meet some family members on my side of the family who came into town a few days before Easter and we had a blast. We made it to the morning service at Trinity and had family over for lunch afterward... and not just any lunch - a serious feast! We had a wonderful time of celebration and truly recognizing the meaning of the cross and resurrection. It was such a blessing to have family come visit, everyone healthy, Skylar at home, and amazing weather! We are looking forward to the Easter season - 50 days to celebrate life, love, and a living God.
Coming home before Easter, I was exhausted after the hospital stay, but Skylar was pretty tuckered out too. No more big messy diapers - YAY! She was only on pain medicine for a few days on an as-needed basis at home and did remarkably well recovering. The incision sites look like they are healing great and her GI check up last Friday went well too - we just got the okay to give her a little prune juice or laxative to help with her constipation so hopefully that will relieve some belly aches. Her g-tube feedings are up to the schedule we were on before the surgery (a 30 minute feed every 3.5 hours) and she is handling them just fine. My milk supply is running low from not pumping enough after a crazy schedule in the hospital and at home so we are pretty much doing all formula feeds now. I haven't given up completely though. This week, we have a check up with the surgeon just so he can see how things are healing and check the g-tube as well, but I expect a good report.
I think Skylar is feeling a lot better after the fundo procedure (not having the reflux as badly) because she's started giggling a lot more. It's the sweetest little sound I have ever heard and it's quite hilarious as an outsider looking in on the two of us I am sure. I'll get her to smile real big by talking to her or playing with her arms or something, and then she give me a little giggle, and then I'll smile real big and laugh with her, then she'll wait until I am done laughing, and will giggle again, and the more she laughs, the more it makes me laugh and it's a wonderful cycle.
Kyle and I had a nice day to ourselves this past Saturday hiking in North Georgia and it was a much needed break - another blessing. The grandparents watched Skylar for us and got to experience the giggles. It was beautiful weather and just some good time to talk about things and enjoy each other. Kyle and I also took some fun pictures of Skylar this past weekend and will hopefully be posting some soon.
The only thing that is of some concern is this dang pollen. Not only is everything yellow and nasty, but Skylar has had a ton of mucous lately. Mucous = very bad for breathing and swallowing. Luckily, our suction machine helps get most of it out, but it sounds like a lawn mower every time you start it up and run it. Skylar has learned to spit out the mucous if she is in a position that allows her to (sitting up or laying on her side) but she creates these little white bubbles when she does it and sometimes ends up looking like Santa Clause if I don't wipe them away. Hopefully we will get a nice hard rain next week to clear all of this out.
So besides a miraculous recovery from a major surgery, another blessing has been the people who have been brought into our lives lately. Of course our friends and family who have been there since the beginning continue to be a blessing, but more recently, two wonderful women (one I mentioned last post who helped me with some questions) and another incredible woman who has lost two boys to SMA now - her name is also Ashley. She has been a huge God send and has hooked me up with a car seat for Skylar that allows her to lie down on her back instead of standard sitting position which makes it harder for her to breathe and swallow. Not only has she donated the car seat, but she has put me in touch with two incredible doctors who have dedicated their careers to SMA and has given me wonderful advice on treatments and care for Skylar. If you feel led, please pray for their family as they just lost their second son this past February and are still so amazing in having the heart to help us and the strength to go forward with love. If you want to learn more about their story, you can check out their blog, www.dailylivingtodie.blogspot.com
Another blessing: we are going to have Skylar's baby dedication this coming weekend and pray that we all stay healthy so that it is possible. We love our church and the amazing family at Trinity that has surrounded us with prayer, love and support. Kyle and I both are completely ready for this and although I might be an emotional mess on stage during it all, our hearts have already dedicated her to our Lord and God and we look forward to doing it publicly for family and friends to be a part of and celebrate with us.
Anyway, thank you all for reading, praying, and supporting us through this not so easy journey we've been forced to travel. I am sure we'll continue to have pot holes, wrong turns, road blocks and all the other not so fun stuff that goes with traveling the unknown, but I also hope that we continue to have great company, beautiful scenery, and pleasant things too. I am comforted to know that we've put our trust in God and He is guiding our every step - so even if we do have an unexpected turn or a break down, He knows what we need and how to get us to the end destination even if we have to change routes. All I know is that we wouldn't be getting through this any other way. Peace.
ps - I will do my best to keep the next post short... or at least shorter. It might be another update through pictures :) I like those.