Friday, September 25, 2009

We're not done yet...

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!

Our little stinker is growing up so fast! She has figured out a few signs that helps us understand her, it's great. We enjoy every second with her, she's so amazing!

video

Saturday, September 19, 2009

Fun with Aunt Suz & Trent
Many thanks to Suz for coming to watch Mya for the week. They had a good time playing together, although she had her hands full! Mya & Trent are 8 months apart, Mya alone is a full time job right now, and adding the baby made it quite the challenge! Mya is super busy now, motoring all around and chatting as much as her little throat allows. She's doing really well. I had a good week back to work, although exhausting getting back into the swing of things. Rob will be with her this week, it'll be good Mya/Daddy time!
Trent Cousin Play Time
Not quite 6 months, and already sitting up and having fun on the car! video Here is her current voice level... it seems to improve daily. We're still hopeful for only a couple more weeks of the tube! video

Monday, September 14, 2009

Go Hawks!
We had a nice family day at home yesterday. Mya enjoyed playing with Daddy, he returned from a business trip to Salt Lake City. My sister Suzanne and her little guy flew in to help watch Mya this week. I gave her a crash course in her care last night and I'm headed back to work today. It's pretty tough to leave our little one, but I'm thankful to be at more of a normal life status!
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Thursday, September 10, 2009

Today has been a sleepy day for Miss Mya, she took a nap for 5 hours! We've weaned down the
major drugs from 4 to 3 times a day, and yesterday was a tough day for her, really feeling the reaction from the change. It's nice that she was able to rest today, and she's seeming a lot less agitated. I'm loving the change since it means that I don't have to get up at 12:00am & 2:00am anymore!!! I think it's the first time I've slept 6 hours straight in 3 weeks! So great. Mya also seems to be doing better with less formula in her little tummy. I cut down the quantity so she'd be hungry for real food, and it's worked great, plus she's not throwing up 3x a day anymore either. We meet with a Occupation/Physical Therapist tomorrow and our Pediatrician on Saturday, hopefully we can get another swallow test scheduled and she'll be healed enough to be off of this tube.
We had a nice day together, it's certainly feeling like fall. Mya got to wear an outfit made specifically for her by our friend Krisite Young, it's so cute! Check out her modeling pictures above! We also "harvested" our tomatoes today. Most of them are green, so I decided to chop all of the plants down and to lay them on the patio to get more ripening sun, we'll see how successful that is. Otherwise, we'll bring them in before it gets too cold at night... I just don't want the fruit flies in the house!
Last night we finally bought our long debated vacuum cleaner. Hello Dyson, goodbye Hoover!!! I love this thing! I've vacuumed the whole house today, and I think I cleaned up 2 years of junk and dirt from our carpet. It is amazing. I had to dump the canister twice! So gross! It is defiantly a good purchase. We've been talking about a new one for at least a year, the old one is 11-12 years old, time to be traded in! Super lame to blog about this, but it's making cleaning much less of a chore!

Tuesday, September 08, 2009

A Wonderful Labor Day Weekend
We had such a nice "normal" weekend! Mya is progressing like a champ. She's seemingly almost back to her previous status... crawling, pulling herself up on stuff and wiggling so much it's hard to hang onto her at times. She's even eating "normally." She hasn't been too keen on the baby foods (she doesn't like Mommy to feed her anymore, she can do it herself), so I decided to lower some of her formula amounts (thru the tube) so that she'd be hungry and we went for it! She's back to eating her peas, cheese, meatloaf and strawberries. It was just like getting back on a bike! Maybe it's a bit soon, but I figured her little tummy would let us know, what's one more puke session? However, she's been doing just fine, plus she's been a lot more aware of what we're eating and certainly wants to have some too! Thus the first taste of corn on the cob! I've been giving her whole milk in a sippy cup with some thickening stuff, it's not exactly quick for her to drink, but she's seemingly really thirsty, as she accepts her cup with excitement every time we give it to her. Now we're giving her both formula and water feedings thru her tube. Her meds continue to decline in volume, and she's seemingly unfazed by it. Hooray!!! Her voice is also slowly coming back, we really noticed it more yesterday, she's starting to try to babble again. SO REFRESHING!
We had a nice weekend, Aunt Michelle & Uncle Steve came for a visit on Saturday, had a family day together on Sunday and Monday the Cox family came to see Mya. She was so excited to see other kids! It's been such a long time for her to be around other kids, she couldn't stop watching and playing with the boys (neither could Rob...).

Friday, September 04, 2009

Swallow Test
Yesterday we went to Children's for Mya's swallow test & went back today for the information to be translated for us. While she didn't "ace" it, she is able to do solids and liquid to a "honey" consistency. That means we have the tube for probably 1-2 more months, since she probably won't get enough fluids drinking honey out of a sippy cup. Disappointing to have the tube, but I'm determined to do as much for her as we can to get her off of it by the end of the month. I am encouraged that she can eat solid foods, I couldn't imagine another 2 months of baby food alone, she's definitely over that! I'm planning to do my own formula weaning schedule- they essentially gave me the green light to do what I want to do. I've learned pretty quickly that the Children's hospital staff is really good at dealing with inpatient care, but isn't suited for the follow up information. All of our appointments are with very smart people, but their job scope is so narrow, they can't cover all of the decisions, and often refer me to others, sending me in circles. It's been a bit frustrating, but after our appointment today, I'm feeling more empowered to make choices for Mya myself. So, we're going to try to get her off as much formula as we can and transition her to normal meals. This will be slow, but I think we can get her back to a normal schedule by the end of the month. The healing of her throat is obviously up to God... we'll see if it happens by October 4th when we're hoping for her to go back to daycare. Our leave time is drying up, and we need to be back to normal as soon as possible.

Wednesday, September 02, 2009

A "Normal" Day
Today we enjoyed our first day out, since we've been home. It's already been 1 week, and Mya is making huge progress. She actually brushed her teeth for the first time, previously she'd throw a fit if we even got close with the toothbrush. She's motoring around backwards on a little push car, and starting to mimics us more. It's very exciting to see our little girl back to somewhat of a normal status. Today we met Andrea, Carter and Elliott at the zoo. I was starting to get tired of being home for a week straight, plus the weather was far to beautiful to be inside today. Mya was great, she really likes the giraffes and the elephants. We all enjoyed a wonderful day out together.

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!