"For you created my inmost being;

you knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made;

your works are wonderful, I know that full well.

My frame was not hidden from you when I was made

in the secret place, when I was woven together

in the depths of the earth. Your eyes saw my

unformed body; all the days ordained for me

were written in your book

before one of them came to be."

Psalm 139: 13-16

Monday, December 30, 2013

Standing on Hope

December has nearly come and gone, and with it, the end of another year. This month has been remarkably good for us. Meghan’s surgery on the 10th went well, and we already see an improvement in her breathing. The morning of her surgery began a little rocky. I had gotten up early to get myself ready to spend the day at the hospital. I heard Meghan cry out in pain- unusual for her. When I opened the door to her room and saw that her feeding tube extension was uncharacteristically far from her body, I knew what had happened. Unzipping her jammies confirmed it- the extension had wedged between the crib and the mattress and when she rolled, it pulled her intact g-tube balloon out through her stoma (the opening where the tube goes through from the stomach to the skin)- think water ballon through a straw, only the straw is her skin. Ouch. I quickly grabbed the spare we have, and attempted to replace it. Time is of major importance, and they were not kidding when they said the stoma closes quickly. I couldn’t get it back in. We packed up pretty quick and headed downtown, where the surgical Nurse Practitioner and resident met us and tried to replace it. No dice. After a half hour of torture (I’m pretty sure everyone in the room was sweating), they called it off and hoped for better luck once she was under anesthesia and more relaxed, the alternative being that they would have to create an entirely new stoma. Many prayers were lifted, and thankfully, they were able to replace it through the old one. Major relief is an understatement. Despite the stress and rough start to the day, the morning’s events turned out to be a blessing in disguise. The tube we’ve had since September had been leaking- not enough that I even thought it was an issue, but enough that when she developed the infection and granulation tissue it was probably preventing it from healing. After battling that for almost 2 months, she got the new tube and her stoma quickly healed and is back to normal. I am still sorry that I didn’t put that together for her, and so grateful that Jesus was watching over her. When that tube came out I thought- “Lord! We have been praying for healing! Not more drama!” Little did I know.  Sometimes the answer to prayer means enduring something harder, to get to what is ultimately better. I am so grateful for a God who knows better than I do, and is always in control.

Since then, we’ve had an easy month! Only one follow up, and therapy has been light with the holiday break. We’ve enjoyed some great days at home, and the girls enjoyed Christmas with our family. Addie was especially fun this year, fully comprehending the season and celebrating with exuberance and joy. You should see her rendition of Joy to the World- it comes complete with interpretive dance! Meghan has been itching for new toys to play with- things that would encourage her development. She’s really outgrown most of the baby toys, but finding things to occupy her developmentally while accommodating for her mobility can be a challenge. Fortunately the Christmas season was upon us, and Fisher Price had a solution (or ten).  Her big gift this year was the Fisher Price Laugh and Learn Learning Home (parents of toddlers…this is one toy that is worth it!! Well designed, and lots of funJ) Recently she has begun to bear weight on her legs for a few seconds. We’ve been encouraging this like crazy. It’s far from standing on her own, and she has a long way to go but her two feet are ON THE FLOOR. Today she noticed that a toy on her new little home was accessible, but out of reach when you are sitting on the floor. She looks at me, reaches up her arms and I helped her to stand and reach the wheel. Elation! She knows. She knows, and she’s fighting to get there. I am so fiercely proud of this little girl. No matter how small, these are the moments that I am sure I will remember for the rest of my life.

2013 is coming to a close, and we are filled with hope. Hope that does not depend on circumstance or season, because it is tied to our Savior. May your holiday season be filled with joy, and your 2014 filled with the kind of hope that never fails.

Surgery Day- game face;)

Looking very grown up at our annual Christmas tea.

Polar Express!

Playing with her new toys!

Sitting like a big girl:)

Hello World!

But I will hope continually, and will praise you yet more and more.

Psalm 71:14

Monday, December 2, 2013

The Eyes Have It

I have this little window of time after the girls go to bed in which to accomplish all the tasks that take 100% of my attention, like for instance, writing- which is why I can't seem to get around to doing it as often as I would like. At any rate, tonight is one of those nights where I actually feel semi caught up on things and can sit down to give you all an update!

Meghan has had a decent month, apart from hitting a little rough patch with her feeding tube. About a week after she was in the hospital, we noticed that the skin around the tube was very red, and the site itself began to drain. With similar circumstances landing her in the ICU this summer, I wasn't taking any chances. Being a weekend, we headed to the ER where after a thorough evaluation we left (yay!) with antibiotics and some really fantastic care from the Pediatric ER staff at Fairview (love you guys!!). After a couple days of antibiotics, the infection was clearly resolving but she began to develop granulation tissue as a reaction to the infection. So, we've been back and forth a little bit with that, but in the last week it is finally settling down- thank goodness! Waiting on healing is an exercise in patience and trust, is it not?!

Meg has been hard at work in therapy this month, and working on her independent mobility. She is finally beginning to attempt to bear weight on her legs. It's for seconds at a time, with major support, but SHE is initiating the movement. You have to start somewhere, right? She tried out a version of crawling that involved keeping her head on the floor. This led to some major rug burn on the forehead, and the discovery that you can't see very well when you have your forehead on the floor so she's back to rolling, with the occasional scoot to change direction. She is ALL OVER the house now, and her new favorite thing is to open and close doors (and by that I mean she closes them, and yells "OPEN CLOSE!" until someone opens it up for her to close again).

The really fun news is that Meghan's ophthalmologist is putting eye surgery on hold for now, in exchange for glasses. We've been patching her daily for well over a year while they waited to see if her eye muscles would get stronger. At the last visit we were expecting to schedule another surgery, and instead left with a prescription for glasses. I almost cried! The greatest part is that she is adjusting to them amazingly well. Given her recent reactions to all things medical, I would have never expected her to keep them on the way she does. She has started to notice more details as well. Some things are fun- like snowflakes! She is also happy to point out every speck on the carpet, and the dust floating in the air.....

Next week Meghan is having tubes put in her ears, and her adenoids removed. She has had fluid behind her ear drum for months, and they want to protect her hearing in her non-deaf ear. We are thankful for a "normal" toddler surgery for once (if that makes sense) but with all Meghan has been through it is becoming more difficult to help her through the trauma of the medical setting. She has absolutely figured out who doctors and nurses are, and has become intensely fearful of interacting with them, even if what they are doing with her is not painful (case in point- exam by her neurologist a couple weeks ago. He basically presents her with toys and talks to her. She cries and yells "ALL DONE!". At this point, I can't blame her.) If you could once again keep our sweet girl in your prayers on Tuesday, we would appreciate it!

We hope you had a wonderful Thanksgiving. Ours was quiet, at home, and and surrounded by family. We have so much to be thankful for, and believe me when I say that we didn't take one second of a day like that for granted.
Get on your feet!

Excessive cuteness.

The girls enjoying the first sled ride of the year!

Finally big enough to play dress up:)

The tree is up! We are ready for CHRISTMAS!!

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God". Philippians 4:6