It seems like we are being pulled in so many directions... We're working with the insurance company, salvage company, contractor, roofing, electrical, plumbing, hvac, carpet, etc... And that is just for the house. It is mind boggling...
And, on top of that, we have to care for the girls. February is proving to be a busy month for Rebekah. Friday the 1st we see the eye doctor who will probably refer us to a surgeon for cataract surgery. So we'll probably have a surgeon appointment and maybe even a surgery scheduled... Friday the eighth we see the Orthopedic doctor at Shriner's for an annual followup. Friday the 15th are the quarterly cancer scans (MRI and Chest CT) and somewhere around there we need to get her panorex done. Tuesday the 19th Rebekah has an annual followup with the ENT. Friday the 22nd we'll do a heart echo and EKG to look for damage from the chemotherapy (we do one or both of these every February). And Tuesday the 26th, we'll meet with Oncology for the results of all the testing. Then in March, Rebekah will get into Audiology for a hearing test (another annual test). Just trying to get things scheduled and not have to take Rebekah out of class is a chore in itself. All of that is on top of school 4 days a week and Speech therapy twice a week.
In early January, we took Rebekah in for a Neuro Psychological exam. Yesterday, we spoke with the doctor to get the results... It isn't pretty... She scores very low for her age in most areas, although she was at age level for comprehension if she could point and didn't have to use her verbal skills. Between the low scores and her inability to sit at task for very long, the doctor suggested a diagnosis of mental retardation. While the "label" stings a bit (at least for us parents), it could open doors for resources that are only available to people with a mental retardation. He suggested that we focus on the behavior issues (inability to sit at task and such) and that we should find a behaviorist that specializes in mental retardation and work with them.
It has been a very emotional couple of months and I'm just not seeing an end in sight. At the same time, I look at the issues that Gage and his family are dealing with and I know that my troubles are few in comparison. Last night, as I was feeling sorry for myself, I looked at the most recent posts on the Ewing's Sarcoma list that I'm a part of and there are a few families who posted yesterday that they are dealing with recurrence and running out of options. It reminded me that we have a lot to be thankful for. That doesn't make our life easy, but it does help us to remember to put it into perspective. It also tends to make the nerves just a little more tense as we approach scan time. Ugh! Please pray that Rebekah's scans come out clear.
Thanks for keeping us in your prayers and Gage's family, too! Not to mention the other families that we care about.
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