We have finally made it to Friday and what a week it has been!!!
Yesterday we went to the speech therapist and to make a long story short, Cooper is about a year behind in his speeh and lanuage and they are recommending us to speech therapy. I will follow up on this, but would like to wait and see the overall diagnosis on him before commiting to a speech therapy program.
Last night my heart was broken into a million pieces. As we were winding down from the day, the boys had eaten their dinner and were watching cartoons and playing through out the house. Clyde was especially wound up and was just running all over the house. He was running around the coffee table, into the playroom, back through the living room and into the kitchen. He was doing this for about 20 minutes and showing no signs of slowing down. Cooper saw what fun his bubba was having, so he dicided to get up and runn around with him. As he was trying to chase after Clyde he realized he could not keep up and sat on the floor in the middle of the living room. He then looked at me and said "Ma, I can't run." This was the first time he has acknowledged that he can't run. Before he was always trying to run and tells me how fast he is. He has now realized he can not keep up with his brother. But don't you worry, because Momma scooped him up and started running around chasing Clyde and jumping over things, and Cooper was just laughing his head off. I don't care if he's 25, I will still figure out a way to run with him!!
Today was the appointment with the hemotologist. He siad that the bone scan came back negative, which means they did not find anything. This is good news. He asked me several questions about Cooper's developement. He asked me about skin problems and if Cooper has cradel cap. I said yes, and he asked me how long, and I know that he had cradel cap up to 9 months, if not longer. Come to find out this is an indicator for Langerhans Cell Histocytosis (LCH).
(Copied from childrenshospital.org)
Langerhans cell histiocytosis is a rare disorder that occurs when there are too many of a type of white blood cell called a Langerhans cell (named for a German scientist). These cells normally reside in the skin and help fight infections and destroy certain foreign substances in the body. In LCH, these cells accumulate on bones and other parts of the body, particularly the head and neck, causing a wide range of problems. LCH can also be found in the ribs, sternum, long bones of the arms and legs, vertebra of the spine, and the pelvis. Although LCH can occur in people of all ages, a majority of cases occur in children under 10 years old.
We do not know a diagnosis, but LCH is at the top of our list as possiblities at this point. We will have a CT scan with a biopsy on Tuesday, but they believe that they will probably have to obtain a larger sample and will ultimatly do surgery to get it.
So we are still in the waiting phase. The good but scary thing is that we seem to be getting very close to a diagnosis. Something that we can start treating.
We will keep you posted as we find more out.
Summer and Cooper