Okay,
I had started some posting on this crazy journal and when I tried to update it, I lost everything. I must have hit the wrong button or something! Here I go again.
Here are some "before Pic". I'll be posting some "After Pics" when Matthew is able to stand without the immobilizers in about four weeks.
Dec. 5th Sunday
Got there a day early for preparations. They took list of medications. Matthew was happy and playing. Matthew's roomate was a little boy from Panama with some kind of joint desease. WE also met a sixteen year old girl that fell in love with Matthew. Her name was Michelle. She wanted to help with Matthew when we fed him. She begged to hold him even though she was recovery from surgery herself. SHe had lots of healing scars on her legs and some type of screw on the outside of her knee that I think is turned every day. SHe has a type of CP and is very smart. I let her hold Matthew on her side while I held on to him. She met us at lunch and held Matthew's bottle for him. She said while feeding him that helping a child like Matthew was the most rewarding experience she could ever have and that's what she wanted to do when she could. It was hard to hear her say that while looking at her in the wheel chair with all of the scars and screws on her legs. Even her hands were tight fisted and crippled. I asked her if she wanted to go home with me but she said she couldnt. lol
He doesn't have a clue what is going to happen to him. I tell him but of course he doesn't understand. I just know he's going to wonder what in the world is going on!
I had started some posting on this crazy journal and when I tried to update it, I lost everything. I must have hit the wrong button or something! Here I go again.
Here are some "before Pic". I'll be posting some "After Pics" when Matthew is able to stand without the immobilizers in about four weeks.
Dec. 5th Sunday
Got there a day early for preparations. They took list of medications. Matthew was happy and playing. Matthew's roomate was a little boy from Panama with some kind of joint desease. WE also met a sixteen year old girl that fell in love with Matthew. Her name was Michelle. She wanted to help with Matthew when we fed him. She begged to hold him even though she was recovery from surgery herself. SHe had lots of healing scars on her legs and some type of screw on the outside of her knee that I think is turned every day. SHe has a type of CP and is very smart. I let her hold Matthew on her side while I held on to him. She met us at lunch and held Matthew's bottle for him. She said while feeding him that helping a child like Matthew was the most rewarding experience she could ever have and that's what she wanted to do when she could. It was hard to hear her say that while looking at her in the wheel chair with all of the scars and screws on her legs. Even her hands were tight fisted and crippled. I asked her if she wanted to go home with me but she said she couldnt. lol
He doesn't have a clue what is going to happen to him. I tell him but of course he doesn't understand. I just know he's going to wonder what in the world is going on!
A Double Rainbow, Just for Me!
I have been praying since the first time they said Matthew needed surgery. I was really nervous because you never know what will happen to a baby like Matthew when they put him too sleep. His brain is so malformed, anything could go wrong. I was so scared, I prayed for some comfort and assurance knowing things would be okay but All I could see what how hard it's going to be for Matthew and us too.. Well, I knew for a fact when God sent not just one Rainbow but TWO that everything will be just fine! While we were in Shreveport the evening before surgery. Here's the double rainbow God sent to us the evening before surgery while we were
I have been praying since the first time they said Matthew needed surgery. I was really nervous because you never know what will happen to a baby like Matthew when they put him too sleep. His brain is so malformed, anything could go wrong. I was so scared, I prayed for some comfort and assurance knowing things would be okay but All I could see what how hard it's going to be for Matthew and us too.. Well, I knew for a fact when God sent not just one Rainbow but TWO that everything will be just fine! While we were in Shreveport the evening before surgery. Here's the double rainbow God sent to us the evening before surgery while we were
out riding around in downtown shreveport looking for a Walmart.:
You can see the second rainbow at the top of the pic on the left. It didn't come out
very clear on this pic was It was very visible that day.
What Have I done to our baby? THat's exactly what the doctor said I would say. We didn't get to see him but just a few minutes after surgery.
The 7AM to 3PM nurse Amanda.
No touching or stimultation. Just stand there and smile. Matthew's lives off of touching and stimulation. It was hard enough to see him that way without not being able to get a kiss or stroke his head.
I did notice he "had hips" now. He looked like a different boy from the waist down.
The 3PM to 11PM Nurse was nice.
When we went to visit Matthew, she said, Hey, Ya'll come on in. We just stood there around his bed real quiet because the other nurse told us that's what we had to do. THis nurse said we could touch and stimulate. Go Figure. lolDec. 7
He was out of ICU and the nurse showed me how to put him in his chair.
He was still in pain with a lot of muscle spasms. HE was given valium for the spasms and Morphine for the pain. He was constantly moaning. I was doing everything I could think of to soothe his pain but I guess there was nothing I could do and was reminded of it by mom and the nurse. I just knew it had to be something. I had help putting him in the chair for the first time and we walked around the hospital. He was still high on the morphine and not really awake but moaning a lot.
Time to stretch. He raised his arm up to put his hand in his mouth but missed and fell back asleep like this!
Santa and his elf come to visit!
Later that evening he started moaning and having spasms again. I did everthing I thought of to help but nothing worked. Finally I decided to pic him up and put him in his chair. Guess What. He immediately stopped crying. I started to put him in the chair but decided to hold him and walk. All this time he wanted Ganny to hold him and I thought It wouldn't help and it was very awkward picking him up without hurting him, but I did it!
Dec. 8 . Matthew still had fever and was having bad muscle spasms. THey tried to tell us we could go home but we refused. It was storming outside and we would have a three hour drive home. I really didn't think he was ready to go anyway and we learned from our last experience not to take Matthew home from the hospital if he was having fever!!!
Dec. 9 Was discharged around 11:00 Matthew had no fever and the weather had cleared up. Was a peaceful ride home because he slept most of the way.
Dec. 10
Matthew was suppose to get in stander but there was NO WAY. Poor baby needed an extra day on everything the doctors said he needed. He only took a thirty minute nap and woke up every hour wanting to be repositioned. He ended up in the bed with John and I. Pawpaw messaged one foot and I messaged the other and he finally went to sleep. That was around three AM when he went to sleep and then he woke up at five AM!
Pawpaw is the best pawpaw in the world. Matthew is the world to him. Even though he has to get up early to go to work, pawpaw has never complained when I need him to help with Matthew during the night or early in the Morning. He's really a wonderful husband and pawpaw considering he has no biological children and my children are his step children and Matthew is his step grandson, but he doesn't look at it that way, he see's them as if they were his own flesh and blood. When he gets home from work, he feeds his animals and comes in to help. Lately he's been cooking supper, then he helps with Matthew to give me a break. He sits in a chair beside Matthew bed to pat him on the back incase he wakes up until we get ready to go to bed. (While he's watching TV). Now that's a real daddy and pawpaw.
Dec. 12 Sunday
Got to take of outter sterile bandages and get into the whirlpool. He has about a four inch insicision on both outher thights, about a two inch behind knees and about a one inch on both abductor tendons. Looks like they are healing well. they are covered with sterile tape stitches with regular stitches inside.
we got in the whirlpool, and that was the beginning of a much happier baby!
Dec. 13 Monday
He gets in Stander. NOt as bad as I thought. We had done our therapy that we were told to do. He seems pretty happy so we put him in the stander. Believe it or not, he is much happier in the stander now than he was before! He didn't even make a fuss or cry. Before surgery, I couldn't put him in hardly anything like his stander or walker for more than 15 minutes before he was fussing. Now I know for sure he was in pain.
He has great head control but his neck was really weak from laying around all this time. We had to watch him so he didn't bag his head down on the stander tray.
Today is Thursday. Matthew is getting two whirlpool baths a day. He tolerates the leg stretches and is in the stander twice a day for thirty minutes each. He had one episode where he screamed because he has a muscle spasm. He wants to sit up now and is getting back to his normal little spoiled self. He's off the Loritab and on regular tylenol.
Dec. 23
It's been a little over two weeks since Matthew's surgery. He had a rough week last week. By that I mean he woke up every hour to an hour and a half for the first 5 days of the second week home. Finally last night he slept a full five hours straight without waking up.
He has the knee emobilizers off but has to use them when he is in the stander. He has to sleep with the abduction pillow at night.
His wounds are healing wonderfully. I was told to leave the sterile strips on and let them fall off by themselves and they are starting to fall off and the healing looks good.
His blisters on his heals are healing up too. THe blisters were caused by the immobilizers they put on him immediately after surgery. THey were too long and his heals rubbed against a metal piece that is inside the splint. One heel wasn't that bad but the other was horrible. Always make sure the immobilizers are above the heals when putting them back on. THis could have been avoided.
He's letting us hold him on our hip but we still have to be careful and not lay him down too quickly because his hips are still sore.
He will bear weight on his legs but not for long. He is getting better and better every day. I can't believe how good he's doing. I notice today that his pants and jeans fit better because he has hips to hold them up. I say his hips are still swollen but that may be how big they actually are. lol Big hips run in the family. Just kidding but that's what I tell his mom.
He is laying on his stomach a lot which is a big change for him. He has never liked laying on his stomach. Now he acts like he enjoys it.
He's not arching and pushing back. He's easy to hold and cuddly, more than before.
I had a cold last week that started off with uncontrollable sneezing. Now guess who's got it? Yes, he was almost asleep at nap time and started sneezing about 7 times in a row. He thought It was funny so he didn't go back to sleep.
He has not been taking naps like he used to during the day time which is hard on Ganny but he does go to bed around 6pm and that's when I get all "MY" stuff done.
Well, I gotta go. Lots of cooking to do. I'll be posting "AFTER" pics in a few days.
AFTER PICS DEC 31 2004
He was out of ICU and the nurse showed me how to put him in his chair.
He was still in pain with a lot of muscle spasms. HE was given valium for the spasms and Morphine for the pain. He was constantly moaning. I was doing everything I could think of to soothe his pain but I guess there was nothing I could do and was reminded of it by mom and the nurse. I just knew it had to be something. I had help putting him in the chair for the first time and we walked around the hospital. He was still high on the morphine and not really awake but moaning a lot.
Time to stretch. He raised his arm up to put his hand in his mouth but missed and fell back asleep like this!
Santa and his elf come to visit!
Later that evening he started moaning and having spasms again. I did everthing I thought of to help but nothing worked. Finally I decided to pic him up and put him in his chair. Guess What. He immediately stopped crying. I started to put him in the chair but decided to hold him and walk. All this time he wanted Ganny to hold him and I thought It wouldn't help and it was very awkward picking him up without hurting him, but I did it!
Dec. 8 . Matthew still had fever and was having bad muscle spasms. THey tried to tell us we could go home but we refused. It was storming outside and we would have a three hour drive home. I really didn't think he was ready to go anyway and we learned from our last experience not to take Matthew home from the hospital if he was having fever!!!
Dec. 9 Was discharged around 11:00 Matthew had no fever and the weather had cleared up. Was a peaceful ride home because he slept most of the way.
Dec. 10
Matthew was suppose to get in stander but there was NO WAY. Poor baby needed an extra day on everything the doctors said he needed. He only took a thirty minute nap and woke up every hour wanting to be repositioned. He ended up in the bed with John and I. Pawpaw messaged one foot and I messaged the other and he finally went to sleep. That was around three AM when he went to sleep and then he woke up at five AM!
Pawpaw is the best pawpaw in the world. Matthew is the world to him. Even though he has to get up early to go to work, pawpaw has never complained when I need him to help with Matthew during the night or early in the Morning. He's really a wonderful husband and pawpaw considering he has no biological children and my children are his step children and Matthew is his step grandson, but he doesn't look at it that way, he see's them as if they were his own flesh and blood. When he gets home from work, he feeds his animals and comes in to help. Lately he's been cooking supper, then he helps with Matthew to give me a break. He sits in a chair beside Matthew bed to pat him on the back incase he wakes up until we get ready to go to bed. (While he's watching TV). Now that's a real daddy and pawpaw.
Dec. 12 Sunday
Got to take of outter sterile bandages and get into the whirlpool. He has about a four inch insicision on both outher thights, about a two inch behind knees and about a one inch on both abductor tendons. Looks like they are healing well. they are covered with sterile tape stitches with regular stitches inside.
we got in the whirlpool, and that was the beginning of a much happier baby!
Dec. 13 Monday
He gets in Stander. NOt as bad as I thought. We had done our therapy that we were told to do. He seems pretty happy so we put him in the stander. Believe it or not, he is much happier in the stander now than he was before! He didn't even make a fuss or cry. Before surgery, I couldn't put him in hardly anything like his stander or walker for more than 15 minutes before he was fussing. Now I know for sure he was in pain.
He has great head control but his neck was really weak from laying around all this time. We had to watch him so he didn't bag his head down on the stander tray.
Today is Thursday. Matthew is getting two whirlpool baths a day. He tolerates the leg stretches and is in the stander twice a day for thirty minutes each. He had one episode where he screamed because he has a muscle spasm. He wants to sit up now and is getting back to his normal little spoiled self. He's off the Loritab and on regular tylenol.
Dec. 23
It's been a little over two weeks since Matthew's surgery. He had a rough week last week. By that I mean he woke up every hour to an hour and a half for the first 5 days of the second week home. Finally last night he slept a full five hours straight without waking up.
He has the knee emobilizers off but has to use them when he is in the stander. He has to sleep with the abduction pillow at night.
His wounds are healing wonderfully. I was told to leave the sterile strips on and let them fall off by themselves and they are starting to fall off and the healing looks good.
His blisters on his heals are healing up too. THe blisters were caused by the immobilizers they put on him immediately after surgery. THey were too long and his heals rubbed against a metal piece that is inside the splint. One heel wasn't that bad but the other was horrible. Always make sure the immobilizers are above the heals when putting them back on. THis could have been avoided.
He's letting us hold him on our hip but we still have to be careful and not lay him down too quickly because his hips are still sore.
He will bear weight on his legs but not for long. He is getting better and better every day. I can't believe how good he's doing. I notice today that his pants and jeans fit better because he has hips to hold them up. I say his hips are still swollen but that may be how big they actually are. lol Big hips run in the family. Just kidding but that's what I tell his mom.
He is laying on his stomach a lot which is a big change for him. He has never liked laying on his stomach. Now he acts like he enjoys it.
He's not arching and pushing back. He's easy to hold and cuddly, more than before.
I had a cold last week that started off with uncontrollable sneezing. Now guess who's got it? Yes, he was almost asleep at nap time and started sneezing about 7 times in a row. He thought It was funny so he didn't go back to sleep.
He has not been taking naps like he used to during the day time which is hard on Ganny but he does go to bed around 6pm and that's when I get all "MY" stuff done.
Well, I gotta go. Lots of cooking to do. I'll be posting "AFTER" pics in a few days.
AFTER PICS DEC 31 2004
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