The first situation is that Carson's body temperature dropped, there were two days where he went down to 93-94 degrees. (Normal is 98.9. 93 borders on Hypothermia). We were very scared. Jeff came home from work to hold him, we had his stocking hat on, and several blankets from the dryer to warm him up. He has since been holding steady around 97. From what the doctors can tell us, the reason for this temperature drop is that his disease is progressing....
The second situation has been with in the past few days. He has been having a lot of seizures, they have been clusters of 'little' seizures and the clusters have been back to back. We don't think he got any sleep on Sunday night, so on Monday night we gave him Roxicet (pain med) to help him sleep and try to break the cycle of his seizures. Tuesday morning he was a little better but by the afternoon he was bad again and we had to give him two doses of Diastat (Valium). We were expecting for that to knock him out...nope....he did not go to sleep until 10:00 pm when we all got in bed. (Yes you can say it, he is SPOILED! But well deserved.) Today, Wednesday, Carson has still been having a lot of seizures, but have not been all back to back. We are not sure if we will need another Diastat tonight, will have to see how it goes....
The third situation is not about Carson. There is another family going through what we did 2 years ago. There 4 month old son was diagnosed with Menkes two weeks ago, they live less than 5 miles away. Jeff and I have been in contact with them, actually they came over to our house a week and a half ago. We are glad that we are available to help support them and help with questions they have. We will be seeing them in the future again and hope to become friends....
That is about all I have right now...I am sure I am forgetting something.
7 comments:
Not the kind of update I wanted, and in all fairness I know it is not for you either. You are all in my thoughts and prayers as is this new family. I am sure that you will be a huge comfort for them for years to come.
CARSON YOU ARE THE BEST! You made my day yesterday with all your gibber gabber on the phone...you always make me smile sweet boy!
It was so great to hear Carson talking in the background on the phone yesterday. I know he was telling me all about his time spent outside as the day was so nice yesterday for you guys.
It is always hard to hear Carson has had some rough days but know that you all are in so many thoughts and prayers every single day.
We send love, hugs, kisses and sunshine everyday! Miss and love you all!
God is at work and His plan is great. One day we will all know and understand His plan.
WE BELIEVE WE BELIEVE WE BELIEVE!
Love,
Aunt Becky & Uncle Marcos
OUr prayers and thoughts are with all of you and we will add the new family to the prayer chain. Give Carson a big hug from us. Keep up the great LOVE you show to each other. LOVE Sue and MArk
Just thinking of you all...love and miss you!
I read this in an email today and thought of you instantly.
Live simply.
Love seriously.
Care deeply.
Speak kindly.
Leave the rest to God.
Love always,
Aunt Becky
WE BELIEVE!
Thanks for posting the update. However, NOT the update I was hoping to read! Please give him big hugs for me! I will call and stop by the next time I am in your area to give him the hug in person...one to you too! On another note, does the other little one need to be referred to CCVI? If so, let me know. I miss you guys and check in with Jeannine regularly.
Love,
Miss Kim
Hello I am new to this group however not new to menkes. I thought I saw that you live in Iowa, we are in South Dakota. I have had two children one passed away the other Tristin is 11. I would love to find someone to talk to. I hope Carson feels better.
Natalie- We live in Olathe KS. We have family in Iowa so its not too far away. Please give us an email at sarahn.bowman@yahoo.com. We would love to hear from you and you can ask us anything. :)
Jeff, Sarah and Carson
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