Our Family

Our Family
"These are the children God has graciously given to me. (us)" - Genesis 33:5

Wednesday, June 09, 2010

Our Joshua

Our little guy Joshua. We should have known from the moment we placed him in his car seat to take him home from the hospital that Joshua would be the one to confound us. Between the ear piercing screams coming from the tiny purple faced baby, and the nurse saying to us, "Oh, your going to have fun with that one!", our fate was sealed.

Joshua is the fuel to every ones fire in the house. He is the one who will disturb a perfectly quiet, content room of his siblings and turn it into mass chaos. He is the one who has the ability to make the most annoying sound in the whole world even more annoying simply by adding it to the general level of noise that is already a part of a household with 5 kiddos in it. (If you've ever seen Dumb and Dumber...the sound is more annoying than that!) Yet, he is the most empathic, endearing, loving, snuggling child in the house. He is sociable with anyone he comes in contact with, and is more than willing to introduce himself...and the rest of us...to everyone he meets.

Over the past couple of years Joshua has been seen by therapists for speech and developmental delay with a vast array of sensory issues. We've seen great improvements in his areas of speech and since last summer's PT sessions started have seen him improve strength wise as well. (Through a physical therapy assessment it was discovered that he has full body hypotonia with lucidity in all his joints with unknown cause) However, we still see signs of other issues that none of the therapists or his pediatrician can pinpoint the cause for.

So, last Tuesday we went up to Dartmouth Hitchcock CHAD in Lebanon, NH. WOW! That place is amazing...and huge. I think it might be bigger than the Mall of NH!! In any case we met with Dr. Mott who is a Neuro Developmental Pediatrician. After an hour and forty-five minutes of discussion and observation he came to the same conclusions. There is definitely something going on with Joshua but it's too varied to come up with a definitive diagnosis...yet. The doctor is bound and determined to get to the bottom of it. What a relief it was to us. Why? Well, to have someone else see what we were talking about and trying to deal with, removed the fear that we were doing something wrong. Joshua doesn't fit into any kind of category for a diagnosis. The doctor said that at this point he won't rule anything out. The following are all a possibility: Autism, Oppositional Defiance Disorder (ODD), Obsessive Compulsive Disorder (OCD), Attention Deficit and Hyperactivity Disorder (ADHD), a metabolic disorder, and mild Ataxic Cerebral Palsy.

Ya, I know...that last one through us for a loop too. But, with my prenatal and delivery history with Joshua, as well as some of his respiratory issues before the age of 2...there is a possibility that he had a lack of oxygen to his cerebellum at some point that would lead to this. AND this form is usually diagnosed around this age due to the mild and rare form of this disorder.

In any case...we are in the midst of getting all of our ducks in a row. We are keeping a sleep log for the month of June, and we have to get him in for his 5 yr. checkup, (which isn't until August 3rd) to have a full blood work panel done. We have set up a full speech evaluation as well as a new sensory profile. He is scheduled to meet with a psychologist in September for a 2 hour behavioral assessment and then he will see Dr. Mott again to reassess. My prenatal and delivery records for Joshua also need to be sent to the doctor for review to see if there was any cause for a lack of oxygen. We will most likely have to do a full hearing and vision screening as well as a sleep study to rule out or include a few other pieces to this puzzle. In the meantime, we are just trying to maintain where we are at with PT, and Hippo therapy in the hopes that we don't have any further regression. Our hands are tied with insurance limitations so we are (again) beginning the yearly process of applying for as many grants as we are eligible for to help pick up where insurance leaves off. We pray that whatever the answer is we will have the grace and resources to handle it. We went through this with Ethan when we were expecting Rebekah and again when we were expecting the twins. Now, with Sarah due in a couple of months, we are repeating the process...but this time it's with Joshua.

1 comment:

Cammie said...

Happy couple days late Birthday to your Joshua! I thought about you on Sunday, hope you all had a great day :)