Kisses for You!
Where's your belly?
As most of you know by now, Addison was selected to be a grant recipient of the UnitedHealthcare Children's Foundation in March. She was awarded a grant to cover the cost of medical equipment that insurance does not cover. After fighting with our health insurance provider for nine months to cover the expense of Addison's "standing device," we were so thankful to just give up the fight and allow the foundation to buy the equipment. This was truly an answer to prayer. (The irony is that our insurance company is UnitedHealthcare and the foundation is sponsored by UHC and their employees primarily.)
Anyway---all of Addison's medical team and physical therapists strongly recommended her spend several hours a day in her stander to build up her bone density, strengthen her muscles, ease digestion issues, and provide her with the other developmental benefits of standing that other kids her age experience. They warned us that she would not like it all initially, but she has never fussed once when we put her in it. She lets us know when her legs get tired, but that is understandable. I have to be creative to vary her activities and keep her occupied while she is restrained from her own freedom.
Addison now uses both an inch-worm/army crawl combined with her rolling to get around the house. Whatever works! She is sitting up straighter, but still feels most confident with at least one arm as stability. She also has learned how to get from sitting position down to the floor to crawl/roll. Now we are working on building up enough arm strength to push up from floor to sitting. God is continuing to teach us EXTREME patience as we eagerly watch and work to accomplish the next steps.
In late May, we took Addison back to St. Louis for a MRI of her spine. The doctors wanted another look to ensure that there was not a visible reason for the minimal movement in her legs and feet. All results came back as normal the following week. More than the potential results, we were extremely nervous about the general anesthesia that was required for the hour long MRI. With Myotonic Muscular Dystrophy, there is a higher risk of respiratory problems arising from anesthesia. She did not have any negative reactions. Almost as amazing, she left with the nurse and physician without a meltdown. At this point, Addie was still crying if another family member (excluding me, Phillip, or Grammy) tried to hold her. She now is fine around the extended family, but not too fond of anyone else holding her. She fools people because she is very friendly from a distance - but don't dare invade her personal space.
In recovery - sleeping peacefully.
Our specific prayers were answered once again. From now until the Fall, we would appreciate your prayers for wisdom as we face the decision on whether to operate on her displaced hip. It is a very extensive surgery and will require MONTHS of body casting and then additional MONTHS in full-time hip braces. We fear that she will lose much of the strength and mobility that she has gained in the past year during this time period. The decision is so hard because nobody but God knows at this point whether Addie will ever be able to walk. If she never walks, the hip never needs to be repaired. If she walks, then the hip needs to be corrected and the success rate of surgery drops substantially as the child gets past 2 years old. Last of all, you can always join us in our persistent prayer for her to be able to stand and walk some day.
Our Angel Baby
Megan tubing.
Daddy and Addie
Johnny and Megan giving us a SeaDoo/Acrobatic show.
Poppie, Megan, Phillip, and Addie at Branson Landing
4th Annual Boat Parade. 
Addie enjoying a boat ride.
Megan & the smoke bomb. (strong anunciation on the 'K')
Mesa Family waiting for the fireworks.
Megan & Grammy
Thanks to Sarah for such a cute & delicious flower cake. She even made all of the candy flowers.
