So I have waited too long... I'll try to make each update brief :) and include pictures!
Skylar's dedication was fabulous! Our pastor has an amazing heart and prayed over us for strength, healing, and peace. Skylar wasn't too happy that day and almost fussed on stage, but she's been giving more smiles recently and even some more giggles again. We had a great time with family and friends cooking out in our backyard and enjoying the amazing weather. It was fun to tell people to pluck some leaves from our garden if they wanted lettuce on their burger too! Below is a picture in a onesie that I made for her at one of my baby showers with some girls at my church - so fun!
So with that said, Skylar is feeling better, but still no tooth. Other people say they see white too so I know I am not making it up, lol. I'm not sure how long a tooth takes to poke through, but it will be fun to see it once it decides to show up. Here's a recent picture of Skylar with her awesome elephant (one of her fav toys). I love her bright eyes that speak so many words...
I have had the privilege of connecting with Stephanie and Aaron who founded the Hope and Light Foundation to raise money for SMA research. They have a 6 year old daughter with SMA and have been fighting hard since day one to keep her here. A sad but familiar story I am hearing a lot - the doctors told them to go home and love their baby because there was nothing that could be done. They picked up, moved to CA where one doctor was doing SMA research, and when the college was going to shut him down, they personally funded his research to keep it going. AMAZING! They created the Hope and Light Foundation when they moved back to Atlanta to raise money for researchers and are excited with the progress being made. We are excited to meet them on Sunday and see their precious little girl. They've been really helpful lately with sharing information and are going to teach us a lot when we see them Sunday.
On a side note: I feel like right now, there are extreme highs and lows for a lot of people in our lives - news of pregnancies, miscarriages, new life, recent deaths, extreme illness and major growth. It is good to know that we can all celebrate and mourn together even though it can be overwhelming. Right now, most of my days are "good days" but even then, there are still sad moments. I think we're doing alright though and are extremely grateful for everyone who has brought us a meal, given us gifts, prayed for us and with us, listened to us share our experiences - mainly me, lol - and for letting us know you care. I always tell people, "I don't know how people go through something like this without faith..." and of course it is a huge help to have friends and family surround you with love as well! THANK YOU!
A new Skylar update: Because we couldn't get a sleep study scheduled until mid-may (our pulmonologist office kind of dropped the ball and we've had a bit of drama getting it all straightened out - which it should be straightened out now) we are getting checked into the hospital on Monday to get a bi-pap machine and will probably stay there a few days to make sure it works and that Skylar is doing well.
We added two more machines to the nursery: a pulse-ox machine (monitors her heart rate and oxygen level in her blood) and a cough assist machine. The pulse-ox was an interesting addition because there is an alarm that goes off when her oxygen level drops out of the 90s and the first time we used it was two nights ago - I think I was up every half hour silencing the alarm and checking on Skylar (part of the reason we're going to the hospital Monday) while Kyle moved to the couch to get some rest. She's doing much better now because I make sure to clear her out using all methods possible before I put her down to sleep and can monitor her better. The cough assist has been neat (although unpleasant for Skylar) because it forces air in and pulls the air back out to simulate a cough and get the mucous up.
More coming soon on future events and plans so check back often. I'll try to update frequently while in the hospital too. Thanks for reading :)