My surgeon was able to find pieces of endometriosis growing on the outside of my colon, my bowels and a small amount around my uterus. She took whatever pieces off that she could and then she sent that off for testing, she has also informed me that she knew of a medication I could be on with the blood disorder/mutation and we should be able to treat it to prevent it from coming back. After the surgery I was in a lot of pain, I tried not to take the pain medication at first but I learned quickly that was not the smartest decision. They also said that the reason that the pain would take me almost to my knees each month was because where the pieces were located. Hopefully this will help with the pain now, she said it will most likely not be immediate but it should subside eventually.
Now, on to bigger things...
For about a year and a half we have been struggling with wonder and doubt of what may be going on with Kherington. We have been to clinics, doctors, through MRI's, cat scans, blood tests, therapy, IFSP programs and she is now in an IEP program. Over the summer we would go to the pool a lot and while swimming she of course would not wear shoes. It was during that time that I started noticing her feet. Without shoes or any support they curved inward when she would walk almost to the point where she was walking on her ankle bones. At this point I was done dealing, I was done messing around. So I started making phone calls, my Mom started making phone calls. Together we accomplished a lot. We were able to get through to Shriner's and find out about their programs. We were also able to find out that Kherington was in fact diagnosed with something in November of LAST YEAR but we were not given a copy of the letter with her diagnosis. I am sure this was not on purpose, but at any rate we didn't get the letter. Today the letter came.
Her overall diagnosis was Spastic Diplegia of Prematurity.
Spastic diplegia, historically known as Little's Disease, is a form of cerebral palsy (CP) that is a chronic neuromuscular condition of hypertonia and spasticity — manifested as an especially high and constant "tightness" or "stiffness" — in the muscles of the lower extremities of the human body, usually those of the legs, hips and pelvis. Doctor William John Little's first recorded encounter with cerebral palsy is reported to have been among children who displayed signs of spastic diplegia.
This condition is by far the most common type of CP, occurring in almost 70% of all cases.
Wow. Just WOW....talk about a shock. I was not expecting that. In my heart I have always known that she had Cerebral Palsy. However, I was expecting that this letter would be vague and have no diagnosis. My heart sank instantly. I did not cry, I just sat staring at the letter. Knowing I had to be tough for her, thinking of the long road ahead... remembering.
Several of you do not know this but my sister Becky also has Cerebral Palsy. Growing up with it and seeing it for the past 35 years of my life I knew that Kherington had it. I would see signs of it in her facial expressions, the way she would grip her hands, her teeter in her walk, the way her feet turned. There were so many similarities between Kherington and Becky that I could not dismiss it. I would not dismiss it. Becky's case was far more severe than Kherington. Kherington is walking AND running on her own. We were never that lucky with Becky so we know that this should be a good sign. Kherington is reaching her milestones on her IEP very quickly, however she is a long way from her goals. She has A LOT of work to do and it will require intense physical and occupational therapy. Our next steps will be to get help. We will apply to get her disability recognized so that if our insurance doesn't cover something money will not be the reason she does not have what she needs. Then we will go to a cerebral palsy specialist and take it from there.
There are going to be long roads ahead but I feel very, very fortunate that my family is strong and supportive about this. They are knowledgeable about her condition and that is something that will help all of us on the path we will travel. When I first started this blog I titled it Raindrops in the Puddle of Life. Well, this is a giant raindrop in our puddle of life. We will stand strong together and pray. We will get through it as a family. With the support of them and the friends who are there for us nothing will hold us back. <3 She will prevail and she will be everything she can be and more!
