Monday, December 21, 2009
At the end of the year, I commonly think back over all that's been done in the previous 12 months. I've been recently looking through our many pictures, that act as our family journal. I was flipping through the difficult photos of Mya in the hosptial only 5 months ago, I can't help but think of how close to losing her we were... I continue to be reminded of the healing power of God. From the thousands of prayers for our daughter, loving hands of the medical staff, and hundreds of notes/Christmas season. What a gift! Greater than that, is the birth of Jesus this season. I can't imagine giving up my only child for others... what a sacrifice. Praise God, I don't have to. We are so thrilled to be enjoying every moment we can with our busy little toddler today. From the deepest part of our hearts, we wish you all a wonderful Christmas and pray that you too can find the best gift of all this season. we received from friends and family, there is no question in my mind that our little girl has a wonderful purpose in life. The only way we made it through the difficult time was our faith. We had no choice but to give our little girl to God, since relying on God was our only option. The odds were against a successful surgery, not to mention Mya's survival. I've never been in that kind situation before, totally out of control. Once we surrendered our "control," we were clearly guided to make several right choices, and with it came an amazing sense of peace. Many people commented on how "together" we seemed. We can take no credit for that! Remembering the pivotal times of chaos, I'm immediately brought to tears just thinking of the amazing amount of grace that's been given to our family. I feel such a level of gratitude, that I'm often unable to put it into words. The result of God's healing hand, our faith and the prayers of many others is a beautiful little angel girl, who I couldn’t be more thankful for this
Friday, December 11, 2009
I wonder what Santa's bringing to Mya? This car seems a little too small for her these days...
Sunday, December 06, 2009
Friday, December 04, 2009
Thursday, December 03, 2009
Tuesday, November 17, 2009
Tuesday, November 10, 2009
We were cleaning up from Auntie Angela's visit, but Mya couldn't resist the blow up mattress fun! Such sweet little giggles!
Mya is back in daycare, another step to normalicy for our family. She's learned so much already in a week, being around other kids and a great teacher! I've been trying for months to get her to say "please" and "thank you" in sign language, it took less than a week for the daycare team to get her to do it! Super impressive. She's also verbally saying "yes" when she didn't before. It seems she's transformed overnight from baby to little girl, doing much better at communicating. We have another swallow test this Friday to see if she can start to drink thinner liquids and if we are closer to being done with the tube. We're still in need of the H1N1 vaccination for her... let me know if you know where we can get it!
Thursday, October 29, 2009
Friday, October 23, 2009
Friday, October 16, 2009
Sunday, October 04, 2009
Friday, September 25, 2009
Last week we went back to the cardiologist to have another echo-cardiogram of Mya's heart. The bummer is that the left side of her heart is the same size as it was when we were discharged from the hospital 2.5 weeks ago, still a little enlarged. That means that either it hasn't had enough time to heal or that the 2nd surgery didn't completely do the trick, and her heart still isn't functioning at 100% (although much better than when we started with). The left side is not working as efficiently as the right side, and blood is "backed up," thus becoming larger. At this time, we'll continue to have her monitored and pray that it's just time that is needed for healing. There is a medication that she can take to help heal the situation, but they didn't give it to us yet since she still isn't off her narcotics that we're still weaning from (we have a few more weeks of them). Our cardiologist is still hopeful that it can heal on it's own. The good news is that we know what to look for; the bad news is that there is the possibility of more "fixing" down the road, worst case scenario is that she'd need another surgery. If her body can hold out for a few years, it would be behoove her to be bigger, as more options are available. So we're a little disappointed, but are glad to know the reality of her status.
On a lighter note, Mya is doing great from our perspective. Her little voice is almost completely back, and we're thinking she's going to be walking in the next week. She's taken a few steps on her own already and stands alone for long periods of time. She isn't needing any physical/occupational therapy (she didn't qualify), as she's progressing very normally. THANK GOD!!! Unfortunately we have to wait 3 more weeks to possibly get her tube out, they couldn't schedule a test sooner.
Thanks to many friends and Rob's co-workers, tonight we went to Dinner's Ready where we were able to make a bunch of meals for our freezer- so great! We had a really good time putting them together (Mya liked it too!), the owner of the shop even knew Mya's story before we got there. This situation has affected so many different people, it's amazing how our little sweetie has touched so many people. Thank you so much to the many contributors, this is such a blessing for us! One of the hardest things is getting back to "normal" life, and having food ready to cook is perfect!
Saturday, September 19, 2009
Monday, September 14, 2009
Thursday, September 10, 2009
Tuesday, September 08, 2009
Friday, September 04, 2009
Wednesday, September 02, 2009
Tomorrow we have Mya's swallow test & meeting with the pain team. I'm praying that we can be done with this tube. It's actually not been too bad, except for when the stupid thing pops open on it's own or when it needs to be changed. We've had accidents in almost every room of nasty smelling formula that has dripped onto furniture or the carpet, unintentionally. I don't think I've done this much laundry in a long time & we're planning to have our living room carpet professionally cleaned as a tube removal celebration. The topper was today, Mya was playing on our bed as I was folding laundry. I picked her up to move her and she was sitting in a puddle of the formula. That straw definitely broke the camel's back. I don't think it would be nearly as annoying if it didn't stink so much! Now we have to sleep with the stench! So gross.
I digress... The swallow test will decide with type of fluidity level Mya is "safe" for, and I think she's going to do great, just a gut feeling. I just hope they see the improvement that I do! The meeting with the pain team should be pretty uneventful, as we feel the medication wean has been a good plan, we haven't really noticed any withdrawal signs this far. Such a blessing! It would be nice to shake a few of the other meds, hopefully we come home with a shorter list in addition to losing the 2:00am med time.
We really appreciate your continued thoughts and prayers, we're not totally done... but each day brings us more normalcy. We definitely attribute it to all of the amazing prayer you've contributed!