Sweet prayers

From my Facebook post October 28th...
At breakfast this morning, Maryelle gestured that she wanted to pray! She’s not using her own language yet, but she’s getting better at repeating. This was such an encouragement and reminder that God has a special purpose for this little girl!! She has such a sweet and funny personality!
It's been awhile since I've updated- so here's the latest. The last couple of months have brought many ups and downs. We have had appointment after appointment with doctors and therapist
s. Maryelle was misdiagnosed in China. She does not have mild cerebral palsy. Instead, she has a genetic syndrome called CHARGE which encompasses numerous birth defects. We are still in process of assessing how she is impacted by these defects: ears/hearing, left eye degeneration, heart, shoulder/neck region. Maryelle’s language retrieval and use is progressing abnormally slow and it’s only with time that we’ll know whether the CHARGE syndrome has affected her cognitively. There are still upcoming tests: spinal cord MRI, brain MRI, ABR hearing test,(12/29) ear CT, and an assessment by developmental specialists at the Waisman Center (3/30/16) [I won’t elaborate on the numerous things that they’re looking for in these tests!]. We’ve begun assessment through the school district and so there will be more services in addition to her current PT, OT and Speech that will help M grow and reach her potential. Everyone that we have worked with has been really wonderful and so caring with Maryelle.

As we have been wading through tests and results that we hoped to never hear, we have remained confident in God and His plan for Maryelle to be our daughter. She brings so much joy to our lives and fills our home with the best silly faces, smiles and laughter EVER. The other morning, she woke up with an upset tummy and for two hours snuggled into my arms as I rocked and comforted her. I was emotionally overcome by the fact that this was the first time she had a mama to hold her for comfort when she was sick.
 Did I also mention that although she’s quite developmentally behind that she’s also very 4?!? So life is filled with silliness, songs, potty emergencies and plenty of opinion and stubbornness!ha And yes, this all can be communicated very well without words!

First time painting!



Newest member of the family: Toby the kitten.



She loves 'washing' dishes.

First gyro & fry at Parthenon's!