Samantha had a follow up appt with her Developmental Ped Dr. on Monday and he has now seen enough evaluations and time pass for a more definite diagnosis. Samantha has moved from a PDD-NOS diagnosis to an ASD diagnosis. He had hoped that between her last evaluation from him and this one that she would move into the "normal" range for speech, language, social interaction, and emotional processing. She sadly has not.
Our 1st line of work will be to have a full set of tests run on Samantha to determine areas of focus. She is having a EEG on Friday to make sure her eye twitch (That she's had since birth) and constantly interrupted sleep is not a form of seizure that is not outwardly noticeable. She will also see a pediatric GI Dr for her chronic constipation issue (which goes hand in hand with Autism) and she will have blood work done to make she she does not have any vitamin or mineral deficiencies as well as a notation of her iron, mercury, and lead levels. Genetic testing will rule out Rhett's Syndrome and other chromosomal issues.
It seems like a lot to put her through but most if it is just done with a blood work-up. If her EEG comes back with something more to look at then we will consider an MRI. He wanted to hold off on that test as it requires her to be sedated and he didn't want to put her anything unnecessary.
I showed him the "red flag" pictures and not only was he amazed by them but he asked to use them in a paper he is publishing through Vanderbilt Medical Center on ASD. I asked if her "pattern obsessions" could just be signs of a high IQ as some have suggested. He said yes, in a child that does not also have the social, speech and language delays Sam has. In her case they are tell tale signs and should not be ignored or dismissed.
In the same time frame as all of this decision making, we have lost another daycare provider and after 6 interviews we are still unable to find anyone reliable or willing to take on Samantha at this time. So after a lot of prayer and soul searching, I gave notice at my job today and will be going back to the roll of full time mommy. I am heart broken that I am no longer in a position to bring an income into our home, but also know that with referrals to many different specialists, and the added services Sam will be getting now...I am needed here for her. She begins Early Intervention Therapy next Monday and Wednesday from 9am-11:30am still with Ms Tara who is amazing! We will have speech resume as soon as possible and that will require 1-2x/week trips to Vanderbilt. Sam will also see an occupational therapist on occasion temporarily until no longer needed.
I am again, as usual, overwhelmed and mentally drained from all of this new information. I really admire Samantha for being able to just get up each morning and take on whatever the day brings with no worries about tomorrow, next week, or next year. This week has been one of the hardest for me and I struggle very hard to be accepting and understanding of all of this.
I ask for continued support and prayers. You all have been so amazing and we are so blessed. I will send you information and articles I find from time to time. If you don't wish to read them that's OK, just hit delete. I just know some of you have said you wished you knew more or could do more, and this is a good place to start.
Hope you are all well and we love you lots!
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