Wonderful News- update on Elijah

My little vampire at Halloween!

Wow. It is past time that I post in here. A lot has been going on, Elijah was seen at the University of Virginia Children's Hospital, Kluge Rehabilitation Center. He was seen in the CP clinic where I have to say we have received some wonderful news. A year ago a developmental specialist diagnosed Elijah with Cerebral Palsy, level 4. The spectrum ranges from 1-5 with five being the most severe and anything above a 3 meaning that the child will likely be wheelchair dependant.

After the specialist at UVA examined Elijah he said that he did not agree with the level 4 diagnosis, he changed it to a 2! He says this means that Elijah will walk independently! No wheelchair for my boy, unless he just gets tired at a amusement park or something and wants to ride on a scooter :) He will have a limp, and may tire easily, he will never be a football star or run track. But, I know that God has something great planned for Elijah. He constantly surprised the doctors and the hand of God is evident in his life!

Cerebral Palsy

Elijah is now the owner and wearer of AFO's (ankle foot orthotics) I hope these will help him walk independently. As most of you know he had been diagnosed with Cerebral Palsy. It is hard to say what caused his CP. I do know that TTTS survivors are at high risk for neurological conditions such as Cerebral Palsy, I have seen statistics that say half of all TTTS survivors are diagnosed with CP. Elijah was also extremely premature, this is a risk factor for Cerebral Palsy, and even though Elijah's brain scans in the NICU were normal,this does not indicate that a brain injury didn't occur. "Nearly one half of all preemies who develop cerebral palsy have normal NICU ultrasounds"

Some early warning signs of CP (for all babies, multiples, preemies, and babies that are full term) are:

• Problems sucking and swallowing.
• A weak or shrill cry.
• Unusual positions. Often the body is either very relaxed and floppy or very stiff. When held, babies may arch their backs and extend their arms and legs. These postures are different from and more extreme than those that sometimes occur in babies with colic.
• Seizures.

One thing I noticed when Elijah was a infant was that it was often difficult to change his diaper. His legs were stiff making diaper changes hard.

Pictures of Elijahs little AFO's will be posted soon :)

Elijah's diagnosis...

Wow, it has been a long time. So much has happened. My boy's and I have moved in to a new place. Nursing school is going great. I am so busy. Elijah was diagnosed with Cerebral Palsy a few weeks ago. Though it is a expected diagnosis, it is still hard to come to terms with. My 3 year old is also seeing a developmental specialist for possible Aspergers. Through all the testing I have found out one thing that I was all ready pretty sure about anyway. My 3 year old is brilliant! He scored through the roof on his IQ test and is academically ready for Kindergarten, but wont be going of course due to maturity. Most of his problems are with fine motor skills and sensory issues. I have a feeling we are in for a wild ride, and doing it by myself is going to be hard, I won't lie, money is a big issue. I am hoping to be able to afford Christmas for my kids this year.

Please keep me and my boy's in your prayers, and I will try to keep you updated. I don't have Internet at my home, so I have to go to the library or my parents house!

I don't have any pics to post right now but will do so soon. Elijah is crawling, though his left side is weak and causes some problems, and he is finally sitting up, at 18 months.

I know God has brought him this far and I know he has BIG plans for Elijah! :)