I can't help but ponder a few things:
Sometimes this life gets so overwhelming and you feel like you cannot catch your breath. Of course at times like that, I wonder "why us?" As much as I am blessed by my family, you can't help but look at families with healthy kids and be jealous. Jealous of their freedom, the ability to make plans and be able to follow through with them instead of cancelling b/c you are always in the hospital, jealous of the the fact that they don't have to worry about the death of your kids. It is just a TOUGH life and we/I handle it great for the most part but then there are days like this.
But what am I gonna do???? I can complain all I want to and get sad, depressed and frustrated but at the end of the day, this is my family. I have to still wake up in the morning and give meds, baths, check blood sugars and care of central lines. So with every new intervention with these boys it gets more difficult and confining and you feel more defeated. Its the nature of the Mito beast.
With that all said, I have to say I think the new diagnosis is bitter/sweet. It actually seems to have been the missing link for Isaiah. He actually started insulin yesterday b/c his blood sugars remained high and it put him in a retching cycle. I called the endocrine dr. that I saw last month, she is wonderful. She wanted to start him on a low dose of insulin once a day with blood sugar checks every four hrs.. Immediately his sugars stabilized and he woke up today a new boy. He was soooo happy and energetic it was amazing. I really think that this may have been the cause of his increased retching spells for some time. He is mildly diabetic at this point (thank god) so the insulin he is getting hopefully makes a big difference with his cycles and his life. I just pray that it remains easy to maintain. Isaiah is actually already used to the sticks every 4 hrs and the insulin.
Through this all, Mr. Avery has been awesome. Although he is not too happy of the buzz cut I gave him. Eek....Just so grateful that my boys take turns being sick though. They are good in that way :)
And Janessa is just so excited about the dog. Still can't believe we agreed to it!!!!!!!
3 comments:
Hope you're OK. Wish we could cure the boys. I'm sorry you have so much to deal with. Glad that Isaiah seems to be feeling better with the Insulin. So glad you kids have such amazing, intelligent, pro-active parents. So many kids don't.
Hope you sleep well. Love Alison xoxoxo
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nicky, i wish i could do something to ease your life a bit.....you are and continue to be so strong. took the boys to church today and a dishelved man stepped out from the church and asked for $2. i said no. he followed us and asked me pointedly "how do i get into heaven". but his message was clear...i was not going into heaven b/c i didn't show him kindness. you, my friend, are going to heaven! your patience with the medical system is endless and the love you show all 3 of your kids is bottomless. i love you.
carbon monoxide lady:)
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