"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

Thursday, April 25, 2013


As I sit down to write this post, I realize it's been almost a month since my last one! There is a lot that has been going on these past few weeks, and we have been pretty overwhelmed with appointments (16 to be exact). So I'll do my best to catch you up:)

Meghan's surgery was almost a month ago, and she has been doing really well! Her back is pretty well healed, and the feeding tube is looking good. We have even been able to use some cute custom made g-tube pads that we got for Meghan that help to secure the tube, and look a whole lot prettier than a boring old medical sponge. She's back in therapy, is getting stronger, and has even started to hold her head up independently for a minute or so at a time before she needs a break!

In addition to therapy and follow ups with the surgeons, she had a full scale developmental test called the Bayley test. Her results were more delayed in some areas than others, but she has what's called a "global" delay which means that she is behind in every area they tested when compared to her typical peers at the same age. I have mixed feelings about the test, especially since we are so proud of how far she has come, but it helped us see where she is at, and where there is still room for progress. It also helped our developmental pediatrician decide that she should be evaluated for speech therapy. We had that done, and we'll be adding that into her weekly therapy regimen. We visited her ophthalmologist who is keeping a close eye (he he!) on her muscle weakness. He wants to make sure her shunt is working optimally, and if so, plans to do corrective surgery on the muscles of her eye in the future. Finally, we had a follow up with her audiologist who fitted Miss Meghan for a hearing aid to help her overcome what we learned was profound deafness in her left ear. We are so hopeful that this might help her speech develop even further! And it will have polka dots. What could be better than that?!

In other exciting news, we were referred for an evaluation for the power mobility clinic. Essentially, if she does well, Meg is getting her very own wheelchair, that SHE can control. Our developmental pediatrician thinks that cognitively, she is able to understand so much, and is a good candidate for the chair. The research has shown that children who are unable to make their bodies do what they know they should be able to do, have amazing success with both increased development and decreased frustration when they were given the opportunity to be in control of their own mobility. Our doc showed us a video of a little girl in the chair for the first time. We were bawling. It is such a profound feeling to see a tool that would give your child the opportunity to do something she can't yet do on her own....get a toy she wants across the room...play in the yard with her sister...I can't hardly wait for that appointment:)

Now for the really awesome stuff. Just this last week, we have started to get medical bills with pretty intense numbers attached, a denial letter from the insurance for a piece of specialized equipment for Meghan (that has been on order for almost 6 months...) calling it a "convenience item" and not "medically necessary", and we found out that our insurance does not cover anything related to a hearing aid for Meghan, including the hearing aid itself. We also have another piece of equipment on order, and now we are looking at possibly getting a wheelchair in the very near future (any and all of which have a 20% copay with our insurance plan). The best part? It's covered. Covered by the hearts of 230+ dear family and friends that love Meghan. Covered by the hard work and generosity of a community of people that care, and a sacred brotherhood of firefighters. Covered by people we have never even met, who were moved by Meghan's story, and her sweet spirit. Covered by one incredible young lady, who has one of the biggest hearts I have ever encountered, and who I am blessed to call my friend. Covered by a God who provides, and who has continued to be faithful. Covered by the hands of people who organized, donated time, effort, and resources to overwhelm our family with love. We are forever grateful, humbled and honored to be the recipients of a love such as this. Our most sincere thank you to everyone who was involved in Meghan's benefit. You have blessed us beyond measure.
Couldn't resist sharing this one:)

Working hard at PT!

Patiently waiting for the doctor!

Caught in the act of snuggling.

Getting fitted for her hearing aid! Daddy's turn to be the bad  guy...

"Bring the whole tithe into the storehouse, that there may be food in my house. Test me in this," says the LORD Almighty, "and see if I will not throw open the floodgates of heaven and pour out so much blessing that there will not be room enough to store it." Malachi 3:10