Today is my Mother's Birthday, Happy Birthday Mom! I took the kids down to Olympia to go to lunch with her and some of my other family today. Luke did pretty good while we were there but when we got home he began to get a real runny nose and tonight he is back to not doing so good again. I have him on 2 liters on the nasal cannula and the flow by oxygen going to keep his stats up to where they should be. Needless to say he still needs prayers!
I don't think I ever reported back to you what we found out from his EEG. When I took him into the Neurologist he told me that he saw seizure activity that corresponded with Luke's video taken at the same time. He told me that Luke would go into high tone and look to the right each time and that was a seizure. I told him for years now Luke's right hand is extremely sensitive and if you touch it without telling him or even if he touches his hand on something he will go right into the high tone looking to the right pattern. But if you tell him you are going to touch his hand he will not go into that pattern. The Dr. told me that this was the first time he has ever seen anything like what Luke is doing. I could tell he was stumped, in fact he asked me if it was ok to share this with some of the other Dr. in the office to see what they thought, I said that it would be ok. Needless to say he wanted to put Luke on Keppra, which is a seizure med, but I've heard about Keppra and it has bad side effects, so I told the Dr. that Gordy and I would talk about what we wanted to do. We have decided to wait until Luke gets his tonsils out to see if that helps with the seizures, since we think they are partially related to his oxygen deprivation problems.
I don't think I ever reported back to you what we found out from his EEG. When I took him into the Neurologist he told me that he saw seizure activity that corresponded with Luke's video taken at the same time. He told me that Luke would go into high tone and look to the right each time and that was a seizure. I told him for years now Luke's right hand is extremely sensitive and if you touch it without telling him or even if he touches his hand on something he will go right into the high tone looking to the right pattern. But if you tell him you are going to touch his hand he will not go into that pattern. The Dr. told me that this was the first time he has ever seen anything like what Luke is doing. I could tell he was stumped, in fact he asked me if it was ok to share this with some of the other Dr. in the office to see what they thought, I said that it would be ok. Needless to say he wanted to put Luke on Keppra, which is a seizure med, but I've heard about Keppra and it has bad side effects, so I told the Dr. that Gordy and I would talk about what we wanted to do. We have decided to wait until Luke gets his tonsils out to see if that helps with the seizures, since we think they are partially related to his oxygen deprivation problems.
We have scheduled Luke to get his tonsils out on April 11th, not the date I would of chosen since it is the Saturday before Easter, but it is the first available date the Dr. has. Therefore we will most likely be in the Hospital on Easter again this year. Though we will see if it actually happens, I'm pretty sure he will need to be healthy to do this surgery, they just postponed his Botox injections, which should of happened today because they didn't want to sedate him while he is not healthy. So much going on, so many appointments, so many Doctors, I'm hoping and praying that as soon as he get's his tonsils and adenoids out he will get healthy again and stay that way for a very long time.
So many people need prayer right now, I almost feel bad asking y'all to pray, but I know that we serve a HUGE GOD who can handle all our prayer requests. Here are some urgent prayer requests: Sadie Belle, Baby Mia and Samuel Lockwood, they all need prayer for more information please check out their blog sites, they are listed in Luke's Prayer links.
Love in Christ,
Luke's Mommy Suzi
3 comments:
I’m praying for your family and many others. Luke is an amazing person in so many ways. Don’t know why his healing seem to be going slow, but totally trust in the One who heals.
Love ya lots!
~ Aunt Cindy
“The LORD your God is with you,
He is mighty to save.
He will take great delight
in you,
He will quiet you with his love,
He will rejoice
over you with singing."
Zephaniah 3:16-17
Luke looks really totally present on these pictures! He seems to be saying what on earth are you doing to me???
Praying for you
Stopping by... with all this sickness haven't been online long these days ... read last three posts... sorry I missed all the excitement. PRAYING for you. I am trying to get the video to load but I am on dial up so may have to wait till I get to church Sunday and load it there.
I love all the pics... thank you for sharing with us. Great birthday!
Sue, I pray for you when I walk in the mornings... praying and lifting you up to the Lord.
HUGS
Teena
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