IT TOOK ME 4 DAYS TO WRITE THIS POST...SO SOME OF THE INFO ISN'T QUITE CURRENT TO TODAY, BUT I WANTED TO SHARE OUR NEW INFORMATION WITH YOU
Well, a couple of things happened today (Friday). Ella and I are not in Iowa. They are having a BLIZZARD and it didn't seem like the best traveling conditions. So, we are spending the weekend in beautiful Dallas with the Roughton's. My sister, Sara, has decided to have a garage sale this weekend so we are entertaining Micah while she sells stuff.
It's probably a good thing that we didn't leave town. Today (Friday) has been an emotionally rough day for me. This morning we went to the Developmental Pediatrician. It's been a while since I've felt like I've really gotten some new and solid information from someone...today I felt that we got a lot of information, and most of it was hard to swallow.
Dr. Roberts confirmed mixed Cerebral Palsy is what Ella "has". This is mainly determined by the damage done to her brain and how it effects the motor skills. We also asked if there was a chance that Ella might have had something similar to a stroke since her right side is "tighter" than her left side. According to the doc today that is totally possible because of the vein that caused concern earlier in her first MRI. They said that there was a blockage or clot that could have caused a stroke, or something that effects the body the same as a stroke. Ella's vision was also a big concern. The doctor is worried that Ella isn't seeing very well, and in turn not processing very well. She is concerned that Ella isn't really seeing things or her brain may not be able to determine things. There is a diagnosis of cortical visual impairment that we are learning will most likely be Ella's vision diagnosis.
Another "issue" that we addressed today was Ella's weight. She seemed to the doctor to be overweight, which is a problem for children with motor delays. However, after weighing and measuring her the doctor says that it's not a concern and just to watch and make sure that her weight doesn't get too much for her length. (right now she is 85the percentile of both).
Another concern the doctor had is Ella's swallowing. You might remember when we were in the NICU and they had to teach Ella how to suck-swallow-breathe so she could take a bottle...they are worried that she isn't swallowing very well and might be getting fluids in her lungs. We have a Barium Swallow Study ordered and will let you know when that is scheduled. The biggest concern is that Ella could develop pneumonia if there is in fact any fluid in the lungs.
I know that so many of you notice that Ella is "getting better", and she is. The concern is that she will continue to get better, until she doesn't. That's a weird way to say it, but the rule is that as long as she's doing anything "better" than we are in a good place...but at any point she could stop and remain exactly where she is...and that is my biggest fear as a mother and her guardian.
One of the hardest parts of the day was getting documents to sign up for a Medicaid Waiver. It's a system in place to help with the (possible) financial costs of everything. The list takes 7-10 years to come to the top of and then how much assistance is based on the developmental needs of the child. We signed up for two MDCP (The Medically Dependent Children Program) and CLASS (Community Living Assistance and Support Services program). The hardest was the 3rd one we had to sign up for...even getting the recommendation to sign up and typing out the words is difficult, it's called HCS or Home and Community-based Services, it's assistance for anyone with mental retardation. Just knowing that we might need any of these services in the future was hard for me.
There are so many concerns for Ella right now. There are a lot of things she does very well (like talking...NO idea where she gets that, probably from her dad); but there are a lot of things where she isn't even out of the 4 month bracket. Every day it gets more obvious that she's different, special, and requires more. Taking her to the nursery at my folks church was odd bc she's almost 10 mos old and she was in with the newborns...bc she would get run-over in the class for her age.
I'm sad. My heart feels broken and I feel down a lot of the time. However, I have been blessed with a child who is ALWAYS happy. She laughs and smiles and scrunches her nose and make you do the same. She talks to herself and then laughs like she is telling jokes...she makes my heart feel more whole.
I believe that God has decided to break me and then put me together the way He intended...he has used a small child to fix me and to bless me.
I'm watching her know as she talks and laughs and I know that she will have a rough road...but she's roll down it if she has to.
Oh, and don't worry about saying the wrong thing or what to say. I don't even know how to say stuff correctly...we'll learn together.
We talked about this verse in my sister's Sunday School class at The Heights on Sunday:
"I rejoice greatly in the Lord that at last you have renewed your concern for me. Indeed, you have been concerned, but you had no opportunity to show it. I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength."
Philippians 4:10-13