Thursday, December 24, 2009

Merry Christmas Eve!

Monday, December 21, 2009

The perfect little gift!

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/words of encouragement 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 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.

Friday, December 11, 2009

Holiday Fun!
This is my favorite time of the year. Between decorating the house, Christmas music and cards from friends and family, I enjoy all the little details included in the wonderful season. I didn't realize that a special little girl would make it all the more magical! Surprisingly, Mya hasn't done much to terrorize the Christmas tree, she likes to look at the decorations, but she is pretty good at leaving them alone! One of her favorite decorations is the Nativity sheep. She makes her own little sheep sound, including sticking her tongue out, it's pretty sweet. Her hair has finally grown enough we have to pull it up to keep it out of her eyes. Needless to say, taking the tails out each day creates a pretty funny little style, creating many photo moments of the little girl bopping around. It seems that we're constantly grabbing the camera to capture a little moment, she's such a little sweetie right now! I've said it before, but I love this age!
Mya just discovered this door stop... video
Snack time and jingle bells. video
A new favorite activity is washing her hands, and playing in the water. Without many words, she's pretty good at telling us when she wants to play in the sink (standing at the closed bathroom door and pointing to it and grunting). I love that it's something fun right now! It makes clean up time less painful for all of us.

I wonder what Santa's bringing to Mya? This car seems a little too small for her these days...

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Sunday, December 06, 2009

Annual Tree Hunt
Today we enjoyed our 3rd annual tree hunt with our friends, Chris, Danielle, Emma and Micah. It's always fun to go get our tree and have lunch together. We spent the rest of the day decorating our tree and our house, both inside and out. My favorite birthday activity! We had a wonderful weekend together, enjoying little Mya giggles and witnessing the excitement of Christmas through the eyes of a beautiful little girl!
Mya all geared up for finding the best tree! video

Friday, December 04, 2009

WONDERFUL NEWS!!!
Today we met with Mya's cardiologist. We are thankful to report that her rapid heart rate that was measured about 2 weeks ago has now decreased and is back to a more normal level for her. The Dr is assuming it was due to a cold she had. She still has bluish lips and cold limbs at times, and we've not found a solid reason for that symptom, but her heart is working very normally. We'll keep an eye on a few other things in the next week or two to see if we can figure out the source. THANK YOU FOR YOUR PRAYERS!!! We were thoroughly relieved with the news. Our cardiologist gave us a lot of her time today for an appointment that was scheduled last minute, she seemed very relieved as well... this little one has a lot of people caring for her! I was really worried yesterday... Many thanks to everyone who prayed for her, it is always an option that her little coronary artery could cause her problem, and I was afraid that if we had a negative visit, she'd be admitted today for more testing. GOD IS GOOD! Since we had great news and the rest of the afternoon to spend together, we enjoyed playing at home, but did a little Christmas shopping this evening. Mommy & Daddy got suckered into this little chair at Target... she loves it! I thought we were going to keep it wrapped and give it as a gift for Christmas, but I think Daddy was more excited than she was, and he opened it tonight. Pretty cute! What an amazing Christmas season for us! We are overwhelmingly thankful for her current health and for every gifted moment we get to spend with our beautiful girl .

Thursday, December 03, 2009

A bit of a scare...
We'd like some prayer for Miss Mya, we are headed to the Cardiologist tomorrow for somewhat of an emergency appointment. Two weeks ago we took her in because her lips were blue and her limbs were pretty cold. They put a heart monitoring device on her to be worn for 24 hours, to test her heart rhythm. Since that time, she's continued to have blue lips consistently in the evening and today our Cardiologist called with the results of the monitoring test. Her heart is beating faster than most kids her age. Needless to say, we're concerned for the outcome of tomorrow's appointment. They're going to test her level of hydration, if she's possibly anemic or if she has any other "easy fix"reasons for the symptoms. If there isn't any obvious reason, we may need to consider another heart catheritization test, to see if her coronary artery is still impeding the flow from her heart, causing the poor circulation. This would include sedation and the breathing tube back down her throat. This is usually an outpatient procedure, but with her history, she'd have to be admitted. Something we really don't want to go back to deal with. We'd appreciate all of your prayers, I'm pretty nervous for the situation.
Here are a few pictures from our trip to Idaho for Thanksgiving. Mya had a ball playing with her cousins, it was so wonderful to see them enjoy each other so much! She enjoyed her first time on the trampoline, a four wheeler ride and an Idaho football game. We all had a great time with family!
Mya's first pig tails!
The first time jumping on the trampoline at Grandma & Grandpa's house.

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Tuesday, November 17, 2009

GOODBYE FEEDING TUBE!!!
It's offical, we're DONE! As of Friday, Mya had another swallow test at Children's Hospital, and she is set to be done with the feeding tube and to be back to normal fluids by the end of this week!!! We are so amazingly thankful to have our little girl back to 100%. Such an awesome thing to have a relatively short recovery, when we could be dealing with some major damage from her arrests. God is so good! We also lucked out and were able to finally get the H1N1 vaccination on Friday without standing in line for 4 hours. Thank you all for your prayers for Mya's recovery. We are so blessed to be beyond recovery at this time! HOORAY for a normal girl! What a perfect time for THANKSGIVING! Miss Mya is as sweet as ever. We are constantly impressed by our little one bopping around on her own. She's so grown up these days! Her latest favorites are saying "uh oh!" reading books, eating everything- bananas are a favorite, and is now doing about 8 different sign language signs to communicate her needs. Goodbye nasty feeding pump! This is the "helper" we've had for the past 4 months. Although it's been useful, I'm not sorry to return it to the home health company...
Mya is a little jabber girl, she's got lots of little sounds, she often seems to be trying so hard to tell us sentances, it just makes no sense to us yet! So sweet, here's a little snip of her evening play.

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Tuesday, November 10, 2009

Giggles

We were cleaning up from Auntie Angela's visit, but Mya couldn't resist the blow up mattress fun! Such sweet little giggles!

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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

Happy Halloween!
We have a busy little bee this year, she's crusin like a champ! We decided to take some pictures between changing her tube, so nice to have a break from the tape on her face!

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Friday, October 23, 2009

WONDERFUL NEWS!!!
Today we went back to have a check up on Mya's heart. This was a pivotal visit, as last time (over a month ago) our Cardiologist was concerned that the left side of her heart was still a bit enlarged and hadn't changed as much as is should have post surgery. At the time, Mya was still on pain medications, so we decided to wait another visit to see if any progress would be made. We were a little nervous going in today, as it could have meant more medication and more to deal with in a negative light. However, after an echocardiogram and xray, Mya's heart seems to be slightly improving. We are so thankful! Her xray also showed less fluid on her lungs, so we're able to take her off the current diaherretic medication she's been on. This means that we are finally off all meds, except the asprin she'll be taking for the rest of her life. They are also trying to help get her off the feeding tube, we're going to start decrease the water through the tube to see if she'll drink more thickened milk on her own. That would be so wonderful! We will all look forward to eliminating that nasty tube. Here is a picture of Mya and our Cardiologist. The whole team has become so important to our family, we're so thankful for their help! Our friend Jen has been watching Mya for the past few weeks. She's been great to take care of her, feeding tube and all. Mya really has a good time playing there, she really likes Morgan who is four, a sweet little friend!

Friday, October 16, 2009

Big News!

Mya is walking! She's pretty tenative, but she can do it! At age 14.5months, we are now in trouble with a fully mobile little miracle girl. We are so blessed that she's motoring around like nothing ever happened to her little body!

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Sunday, October 11, 2009

Sunday, October 04, 2009

Visiting the Pumpkin Patch
We enjoyed time with Uncle Steve & Aunt Michelle this weekend, and took a trip to the pumpkin patch. Nothing like pumpkins, corn on the cob and fresh apple cider! Yum! Thursday Rob took Mya in for another swallow test. She is much better, but we've yet to hear the diagnosis from our doctor. We're hoping to get the tube out, but are guessing that we'll have it in for another month. Kind of a bummer, but our Pediatrician has also recommended that we don't put her back into daycare until she is vaccinated for the H1N1 flu, which is TBD on the release. So, we have 2 reasons now not to be around a lot of kids with germs, so our friend Jen will be watching her, she's such a saving grace!

Our grown up girl!

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!

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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!