Alot has happened, since I last blogged.
I'll start with me, first, I guess...
I was finally diagnosed as of February with Multiple Sclerosis. If anyone knows about this disease, I have the Secondary Progressive type. The first week of March, I did Acthar Gel shots daily because of a major exacerbation that has effected my eye sight. As of March, I have also started Betaseron shots every other day to fight the progression of my MS. I tend to feel that the side effects of the shots are even worse than the disease. I am praying that the side effects go away soon.
She had the Developmental Assessment in April. We had a follow-up meeting with the team before spring break. Jessica has a lot of the characteristics of Autism but they feel it is not Autism. The Special Education head told us that the DAT team cannot diagnose Aspergers. I am confused because Aspergers is a form of Autism. The reason why we had this assessment, in the first place, was because Jessica's Psychiatrist feels that Jessica has Aspergers. The school told us, that the Developmental Awareness team could tell us if she had it or not. The DAT told us, that what needs to be done now is to treat Jessica's autistic like characteristics. Jessica's school informed us, that since Jessica does not have a diagnosis, they will not help her. So we are basically back to square one. No help for Jessica at school. Jessica's therapist has contacted a colleague and Jessica was put on a waiting list for testing/diagnosis. We are praying that she gets in soon. As of right now, she is still in theraphy, seeing her Psychiatrist, and on Meds.
Hunter has started being treated by an Endocrinologist. Hunter has been failure to thrive since he was born. He has not grown in almost a year. The Endocrinologist sent Hunter for blood tests and a bone scan. The results are the following: According to his bone scan his bone growth is the size of a 3 yr old. Since he is almost 5 that is not a good thing. So, depending on when the insurance approves it, we will be starting Growth Hormone Shots at home.
Hunters blood tests can back okay, except for his Liver enzymes. They all seem to be high. We will have to go back in a month for more blood work, to have them checked again. The Endo wants to see if the enzyme levels are higher. The Endo is worried that Hunter may be having problems with his liver.
Hunter also had an appointment with his Gastro because he is not gaining weight. He has been put on a fat/carb supplemental drink. We are also adding olive oil to all his foods and increasing his sugar intake. If this doesn't cause him to gain weight, the Gastro is going to test him for a Metabolic disorder. We can't understand why he has a gaining weight problem. He eats all the time!!!
If you can believe it, Matthew is our child of most concern. Since birth he has has severe digestive and developmental issues. Since Matthew was an infant he has always had problems on his right side.
He didn't roll to his right until he was around 6 months old
He didn't sit up until he was 8 months old. He would always fall over on the right side until then.
He crawled at 11 months old but always dragged his right leg.
I breathed a sigh of relief when he was 12.5 months old and learned to walk. He still had problems with his right leg but the Ped said that some children had this and it will get better.
Well, in the last month, Ryan and I began to notice that his right leg problems are getting worse. He started dragging it even more and then started falling down a lot. We decided to take digital movies of the his increased walking difficulties.
Yesterday, his walking got so bad, all he did was fall down. So we ended up taking him to the Dr. Of course, his Dr. was on vacation, but we got to see the big Kahuna of the office. Which turned out to be a good thing. The Dr that saw Matthew checked out his legs, his walking, and our digital videos.
He told us that he sees increased weakness in both legs. More on the right than left. I had, kinda, seen it on the left, but wasn't sure.
He said that it could be CP, but since he is deteriorating, it could be Muscular Dystrophy.
He had us take Matthew for an x-ray today. He said Matthew's hips looked fine, but he just wants to be sure. He is going to schedule Matthew for Muscle/nerve testing. He is also going to set Matthew up with Physical Therapy. He wants to see if PT helps at all. If it doesn't, then he is going to have a muscle biopsy done. The Dr, did say that both our boys have been a mystery and in finding out what's wrong with Matthew. We might finally find out whats wrong with Hunter. To tell you the truth, I would rather be ignorant than find out something terrible. KWIM!!!
Ryan and I drove home in shock. We don't really know how to take this all. I guess we will persevere like we always have.
Sorry everyone, I told you that a lot has happened and I wasn't kidding. I hope you all made it through reading this. I am going to try to post more often so reading this blog won't be so tedious. Thank you for being you.
May 30, 2007