We Have A Date

 Marlee had a follow up appointment with the neurologists this past Friday and when they weighed her, she was 12lbs and 7ozs!! I couldn't believe it. I am so thankful she is gaining some weight! She can still wear 3-6 months clothes but she will get there!!! The neurologists was pleased with Marlee's muscle tone but did tell us that she may always have low muscle tone (hypotonia) due to the DiGeorge Syndrome. She also has a 25% or greater chance to have a seizure. So, that is something else we will have to watch for.  She will roll all over the floor and can sit up with help but not sitting on her own completely, but we are working on it!!

 I finally heard from the surgeons office this past Friday.  This coming Thursday, August 1st, Marlee will have her vascular ring surgery at Children's Hospital.  David and I are already so nervous. It is a relatively low risk surgery with success but it's always easier to say low risk when talking about someone else's child.  To you, it is high risk.

At this point, they will not have to open up her chest. They will make an incision on her right upper side and cut the ring.  I have been told that it could possibly be a 5-7 day stay in the hospital but hopefully all will go well and she will be able to come home in 2-3 days. I will be staying with her at night while David is home taking care of the other kids.

I'm so ready for her to be ok.  At times, I ask why.  Why is she going to have to go through all of this? Why her? At times, I burst into tears.  Sometimes I just don't know what to think.  I tell you what though, she is the sweetest baby! I am so very thankful that she is in my life. Because of the DiGeorge Syndrome, we will forever be opened up to a world of things that we never would have thought, but God made Marlee just the way she is......and that makes her so very precious in His sight!

I am truly honored and blessed to be her mom. She has my heart tightly wrapped around that little finger!

 

 

Thank you for your continual prayers!

Love, 

~A