I've never liked Halloween. I still don't.
I think the many years of infertility and wanting children so badly is the cause. Going to the door and seeing all the little tiny pumpkins, lions and bumble bees was tough. I wanted so much to be out with our children, not doing this for others. I know, selfish, but infertility sucks, and it changes people, women especially I think. Don't get me wrong, I enjoy taking our kids out, experiencing it through their eyes, but I still don't like it.
Another reason now that I do not like Halloween is because it will always be the anniversary of the stroke that started my Moyamoya journey. Two years ago tonight our world changed. I still remember it like yesterday, but I will not bore anyone with the details yet again. I am however, very thankful every Nov. 1st, to wake up feeling great!
Monday, October 31, 2011
The nights are horrible for my poor little guy! He wakes up screaming and crying, inconsolable, it's heart breaking. I keep thinking that it has to get better for him soon. The days aren't as good as they were now either, but not as bad as night time. The Tylenol isn't doing it any more, and at 4:00am this morning we had to force the prescription stuff down him. It tastes horrible, but it works! I then covered my bed with towels...just in case.
This HAS to improve soon! He is in so much pain and we are exhausted!
This HAS to improve soon! He is in so much pain and we are exhausted!
Friday, October 28, 2011
(I am documenting this experience so I remember correctly later. My memory isn't what it used to be)
My baby boy (OK, he's 4 1/2, almost 5, but still my baby!) had his tonsils and adenoids out, and tubes put in his ears yesterday, 10/27/11. Everything went well and we left the hospital at noon for home.
We were very nervous. The word "surgery" doesn't sit well in our house anymore. We didn't tell him about it, other than he had a doctors appointment and they were going to make his throat and nose better. I was afraid that he would think he was going through what I went through with my Moyamoya surgeries, so we just called it a "procedure".
Once we got home yesterday he seemed fine. He had 2 Popsicles, a juice box and 8 unbreaded chicken nuggets. At dinner he had some milk, mashed potatoes and a little bit of mushed up meatloaf. He did really well. We started the humidifier in his room a couple hours before bedtime and he went to bed as well as he usually does. It all seemed too good to be true. I felt like it was the calm before the storm...and I was right!
He woke up at 1:15am just screaming, crying, coughing...walking around his room. It took forever to get him calmed down. It took just over an hour to get him calmed down, medicated again, and moved to our bed. My 6 1/2 year old daughter woke up and was very worried about her brother. She wouldn't go back to sleep unless she was by him, so the three of us slept in my bed, and hubby moved to our son's bed. My husband refilled and moved the humidifier to our room and the 3 of us tried to fall asleep. It was about 2:40 when they were both asleep.
I was sleeping at the foot of the bed, the wrong direction when I heard a rough voice say "I'm going to throw up!". It was 4:14am. I jumped up to run him to the bathroom but it was too late...red vomit all over my bed. I was going to run him to the bathroom, but let him finish on my bed. I can clean or buy new bedding a lot easier than I can get new carpet! My husband cleared the bedding while I was in the bathroom with our son. He finished spitting in the toilet while I ran him a warm bath. The nurse did tell us that the pain medication can make him nauseous and he may throw up. Nice, so let's make the medicine blood red so that parents panic for a split second when they see it!
I got him out of the tub, dressed and back to bed at 5-something am. I gave him plain Tylenol (right when I put him in the tub) and we fell asleep after just a few minutes. I made my daughter go back to her bed as she was not getting any sleep with us. She was up the entire time the rest of us were, worried about her brother. So, she got no rest and is home from school today to get caught up.
I was up at 6:30 to see my husband off to work and get my nephew up and ready for school. He got on the bus at 7:25 and I went back upstairs to check on both sleeping kids. Both were sound asleep so I crawled back into my bed with my son. He was up about 10 minutes later...so much for getting any sleep. I gave him more Tylenol and carried him downstairs to the couch. We made a comfy bed, turned on some cartoons, had some juice and then within a few minutes my daughter was up. I'd hoped she would have slept longer. Oh well.
Now again, my son seems fine, which is wonderful! He is sucking on a sucker (they said it helps him produce saliva, which is good), watching cartoons and coloring. I am washing bedding. I hope all that red coloring comes out. Luckily, it's white t-shirt material sheets. I can bleach it if need be.
My baby boy (OK, he's 4 1/2, almost 5, but still my baby!) had his tonsils and adenoids out, and tubes put in his ears yesterday, 10/27/11. Everything went well and we left the hospital at noon for home.
We were very nervous. The word "surgery" doesn't sit well in our house anymore. We didn't tell him about it, other than he had a doctors appointment and they were going to make his throat and nose better. I was afraid that he would think he was going through what I went through with my Moyamoya surgeries, so we just called it a "procedure".
Once we got home yesterday he seemed fine. He had 2 Popsicles, a juice box and 8 unbreaded chicken nuggets. At dinner he had some milk, mashed potatoes and a little bit of mushed up meatloaf. He did really well. We started the humidifier in his room a couple hours before bedtime and he went to bed as well as he usually does. It all seemed too good to be true. I felt like it was the calm before the storm...and I was right!
He woke up at 1:15am just screaming, crying, coughing...walking around his room. It took forever to get him calmed down. It took just over an hour to get him calmed down, medicated again, and moved to our bed. My 6 1/2 year old daughter woke up and was very worried about her brother. She wouldn't go back to sleep unless she was by him, so the three of us slept in my bed, and hubby moved to our son's bed. My husband refilled and moved the humidifier to our room and the 3 of us tried to fall asleep. It was about 2:40 when they were both asleep.
I was sleeping at the foot of the bed, the wrong direction when I heard a rough voice say "I'm going to throw up!". It was 4:14am. I jumped up to run him to the bathroom but it was too late...red vomit all over my bed. I was going to run him to the bathroom, but let him finish on my bed. I can clean or buy new bedding a lot easier than I can get new carpet! My husband cleared the bedding while I was in the bathroom with our son. He finished spitting in the toilet while I ran him a warm bath. The nurse did tell us that the pain medication can make him nauseous and he may throw up. Nice, so let's make the medicine blood red so that parents panic for a split second when they see it!
I got him out of the tub, dressed and back to bed at 5-something am. I gave him plain Tylenol (right when I put him in the tub) and we fell asleep after just a few minutes. I made my daughter go back to her bed as she was not getting any sleep with us. She was up the entire time the rest of us were, worried about her brother. So, she got no rest and is home from school today to get caught up.
I was up at 6:30 to see my husband off to work and get my nephew up and ready for school. He got on the bus at 7:25 and I went back upstairs to check on both sleeping kids. Both were sound asleep so I crawled back into my bed with my son. He was up about 10 minutes later...so much for getting any sleep. I gave him more Tylenol and carried him downstairs to the couch. We made a comfy bed, turned on some cartoons, had some juice and then within a few minutes my daughter was up. I'd hoped she would have slept longer. Oh well.
Now again, my son seems fine, which is wonderful! He is sucking on a sucker (they said it helps him produce saliva, which is good), watching cartoons and coloring. I am washing bedding. I hope all that red coloring comes out. Luckily, it's white t-shirt material sheets. I can bleach it if need be.
Tuesday, October 25, 2011
My youngest child, my son, who will be 5 in December, has to have his tonsils and adenoids out, and tubes put in his ears.
I know it's a very common procedure, but I am very nervous and scared. I hate that he has to go through this, but we know it will make him so much better, and give him so much relief.
We are avoiding the word "surgery"...he is having this procedure done to make him better. Even though it has been almost 2 years now since my 2 brain surgeries for Moyamoya, he still knows and remembers what I went through, and what we all went through during that time. Even though we called it "head ouchies" he now knows that I had two surgeries and associates the word "surgery" with what I went through. We do not want him to ever think that he has to go through that. So, in 2 days, he will have a procedure done to make him breathe and feel better.
Please say a prayer for him if you can.
Dear God,
Please protect my son during this time. Please hold him tightly in your loving hands and return him safely to us. Please shine your love and peace on him the way you did for me during my Moyamoya surgeries and help him to heal quickly with minimal pain. In Jesus' name. Amen.
Thursday, October 13, 2011
Prayers have been answered!!!!
My friend here in town, who also has Moyamoya, has been struggling with the financing she needs to make her trip to Stanford for her surgery. I have been wracking my brain trying to figure out how we can do this, short of going door-to-door asking for donations. I told my husband "I wish we could just write out a check to her to help out" and even talked about having one of the mommy groups I belong to try to help out if we could. I have been praying to God to please help out this family and...
I talked to her this morning and she is getting financial help, from a non profit Moyamoya foundation located in this region. HOW AMAZING IS THAT!!!!! It is the answer to many prayers, I am sure. YAY! I am so happy and excited for their family!!!!! :D
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