Today, October 12, marks 8 years since Mason was first admitted into the hospital and diagnosed with Infantile Spasms (later progressing to Lennox Gastaut Syndrome). The first few years I cried on this day because it was a painful memory. Today I cry for a different reason. God has been so faithful. He has been there all along, and even though we still have our struggles, I know He will continue to not let any of it be wasted.
Here a quick update on the boy. The diarrhea stopped for a couple of days, but returned soon after we arrived at the retreat this weekend. He has an appointment with a pediatrician on Tuesday to look into it. There was nothing that triggered it this time, that I know of anyway. It did make the retreat more difficult...
The weekend retreat was for families of kids with special needs. I have never felt so comfortable, as a family, in a group setting as I did this weekend! Acceptance, compassion, caring as well as 'not caring' when your child's behavior becomes not-so-nice. Like throwing a spoon across the dining room, tossing over chairs, screaming, etc. And that was only some of the stuff Mason did! I could just stand there and let him have his tantrum and nobody gave me funny looks.
Asia and Sydney both connected with other girls near their ages, and have formed friends for life, I'm sure. This was the first time Asia has met someone in her age group that has a sibling with special needs. And they go to the same youth group!!! Finally she has someone to identify with!
I was nervous Friday night, but not so bad Saturday morning when I spoke. And not at all on Sunday. I think I did alright in speaking and engaging everyone in sharing on different topics with questions I posed. It's always hard to tell, but some did tell me that there were a few things that they now view differently. :) There were many, many nods of agreement as I spoke. We identified with each other.
The most incredible moment for me was at breakfast on Saturday morning when I was talking to another mom. She had been feeding her 10 year old disabled son, but paused as she and I conversed. Suddenly her daughter, also 10, took the fork from her mom's hand and started feeding her brother, just picking up where her mom left off. I burst into tears. I have never seen another family operate the same way ours does. It's hard to explain, but families that have someone with a disability just operate differently. This weekend was such a bonding event like I have never experienced.
I could go on and on, but I promised a 'quick update'.
THANK YOU for your prayers this weekend and thank you in advance for your prayers this week.
Tuesday: Pediatrician
Wednesday: Neurologist
Off to bed, retreats = sleep that is not as good as at home!!
Sunday, October 12, 2008
Sunday, October 05, 2008
Complications
Hey there everyone.
I just sent an email off to Mason's neurologist at Children's. So please ask God to give her His wisdom, His knowledge, His understanding as to what is going on with Mason.
As you know, he started hallucinating this summer. We've been messing around with his medications to see if they are causing this side effect. In doing this, his seizures have lessened (they'd been going up) and he is actually sleeping better at night because his night seizures are shorter and he settles quicker to go back to sleep. We are so happy for that!! :)
Although they have lessened in intensity, the hallucinations are still happening once each week or so. I'm starting to wonder if it's something else. He is also on day 5 of diarrhea, without being sick. (I really don't like doing laundry!!) It started after having some plums and grapes when he was with someone else. He has always been sensitive to grapes, but recovers quick. I didn't even think to tell the person he was with to avoid grapes. He's had food sensitivities ever since he was little. I also wonder what 8 years of heavy medications has done to his system.
Something's going on, but I don't know what. Usually I can kinda figure it out, but not this time.
Coming up:
We have an appointment with the neurologist on October 15.
I'm speaking (3 times) at the Family Support Network Retreat (for families with a member with a disability) next weekend, Oct 10 - 12. (Oct 12 is the 8th anniversary of Mason's diagnosis and first hospitalization) The kids are coming along. They have caregivers for the kids with special needs, and fun activities for the siblings as well!
I'm also taking a course that requires a lot of time.
I just sent an email off to Mason's neurologist at Children's. So please ask God to give her His wisdom, His knowledge, His understanding as to what is going on with Mason.
As you know, he started hallucinating this summer. We've been messing around with his medications to see if they are causing this side effect. In doing this, his seizures have lessened (they'd been going up) and he is actually sleeping better at night because his night seizures are shorter and he settles quicker to go back to sleep. We are so happy for that!! :)
Although they have lessened in intensity, the hallucinations are still happening once each week or so. I'm starting to wonder if it's something else. He is also on day 5 of diarrhea, without being sick. (I really don't like doing laundry!!) It started after having some plums and grapes when he was with someone else. He has always been sensitive to grapes, but recovers quick. I didn't even think to tell the person he was with to avoid grapes. He's had food sensitivities ever since he was little. I also wonder what 8 years of heavy medications has done to his system.
Something's going on, but I don't know what. Usually I can kinda figure it out, but not this time.
Coming up:
We have an appointment with the neurologist on October 15.
I'm speaking (3 times) at the Family Support Network Retreat (for families with a member with a disability) next weekend, Oct 10 - 12. (Oct 12 is the 8th anniversary of Mason's diagnosis and first hospitalization) The kids are coming along. They have caregivers for the kids with special needs, and fun activities for the siblings as well!
I'm also taking a course that requires a lot of time.
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