Tuesday, June 29, 2010
Can't sleep
I swear, my anxiety with this surgery is worse than all the others and I don't know why. I know we are making an informed decision, and after talking with Drs that we trust we are confident it's the right one, it's just so scary. So, tonight I will watch a funny movie, and try and distract myself while I pack for the next week.
Day before surgery
It seems like the day is going to fast, yet not fast enough. I'm trying to get a bunch done around the house, and it just doesn't seem to be happening. I have some errands to run, but I'm going to wait for Carrigan to get home so I can just have time to myself. I bought some yarn and I'm going to make hats for the preemies, so I can keep my hands busy. We told Claire she's getting a g-tube and so far she's ok with it. Obviously we expect things to change once it's there but for the moment she's ok with it. My mom took the day off tomorrow so she can keep the other kids and we don't have to worry about it, so that's a big relief. And my Dad is coming to sit with us during the surgery, which means a ton to me. Just having him there helps me stay calm.
Friday, June 25, 2010
Yay for Friday!
We had an amazing turnout at our fundraiser this past Wednesday. It was very humbling to see everyone there to support the kids, not to mention the silent auction was a riot! People really got into it. We're looking forward to doing it again, hopefully in August. Lori, you are amazing for getting this all set up so quickly!
I also took Sam and Claire to the developmental pediatrician. They are hanging in there, but there's some new neurological things she's seeing that are definitly concerning. At this point Sam doesn't have to go back into his braces, but we're keeping an eye on him.
Sam's been having a rough go though, poor guy. Last week we had to have him fast for 6hrs for a test. Turns out the wrong test was ordered and he never should have fasted. I got him hooked up for a feed as soon as I found out, and gave him a donut but he was off all day. That evening he collapsed while we were out shopping. He was laying on the floor crying and holding his head, screaming that his head hurt. I got water in him right away, and some food until he could get hooked up, but it wasn't until the next evening that he started looking a bit better. So, from here on out Sam is not allowed to fast, ever. If there's a test or procedure that needs to be done he has to be admitted the night before and put on an IV so this doesn't happen again. And, if that's not enough, he had an episode on Tuesday. He bounced back fairly quickly, but he just doesn't look right to us. The geneticist thinks that the heat is making things worse, so we're trying to work out a calculation of how much fluids he needs on certain days to try and help the kid out a bit.
Miss Claire's surgery is set for June 30th. We check in at 9:30 for an 11:30 surgery time. It's expected to last 3-5 hours. They are doing a pyloriplasty (putting a tube between her stomach and small intestine) to help with her stomach emptying so slowly, and per genetics they will be placing a g-tube. They are also taking a skin biopsy for genetics to take a look at. The surgeon will also take a look at her Nissen to see if it needs to be tightened at all to help with her reflux. I can honestly say that this surgery absolutely terrifies me. I know that 3 surgeons, a geneticist, and GI Dr have all decided that this is what's best for her, but damn she's my baby! She will spend a minimum of 5 days in the hospital, and last I heard she was having a contrast study on Friday to make sure her intestines aren't leaking before they let her eat. She's going to have such a tough time.
I hope that everyone has a fantastic weekend! My step-dad is coming over to help Carrigan build shelves in the garage for extra storage. Who knew I'd be so excited about shelves! LOL
I also took Sam and Claire to the developmental pediatrician. They are hanging in there, but there's some new neurological things she's seeing that are definitly concerning. At this point Sam doesn't have to go back into his braces, but we're keeping an eye on him.
Sam's been having a rough go though, poor guy. Last week we had to have him fast for 6hrs for a test. Turns out the wrong test was ordered and he never should have fasted. I got him hooked up for a feed as soon as I found out, and gave him a donut but he was off all day. That evening he collapsed while we were out shopping. He was laying on the floor crying and holding his head, screaming that his head hurt. I got water in him right away, and some food until he could get hooked up, but it wasn't until the next evening that he started looking a bit better. So, from here on out Sam is not allowed to fast, ever. If there's a test or procedure that needs to be done he has to be admitted the night before and put on an IV so this doesn't happen again. And, if that's not enough, he had an episode on Tuesday. He bounced back fairly quickly, but he just doesn't look right to us. The geneticist thinks that the heat is making things worse, so we're trying to work out a calculation of how much fluids he needs on certain days to try and help the kid out a bit.
Miss Claire's surgery is set for June 30th. We check in at 9:30 for an 11:30 surgery time. It's expected to last 3-5 hours. They are doing a pyloriplasty (putting a tube between her stomach and small intestine) to help with her stomach emptying so slowly, and per genetics they will be placing a g-tube. They are also taking a skin biopsy for genetics to take a look at. The surgeon will also take a look at her Nissen to see if it needs to be tightened at all to help with her reflux. I can honestly say that this surgery absolutely terrifies me. I know that 3 surgeons, a geneticist, and GI Dr have all decided that this is what's best for her, but damn she's my baby! She will spend a minimum of 5 days in the hospital, and last I heard she was having a contrast study on Friday to make sure her intestines aren't leaking before they let her eat. She's going to have such a tough time.
I hope that everyone has a fantastic weekend! My step-dad is coming over to help Carrigan build shelves in the garage for extra storage. Who knew I'd be so excited about shelves! LOL
Sunday, June 20, 2010
Saturday, June 19, 2010
We had a great time last night! We threw a suprise party for Grandma's (Carrigan's Mom) 60th birthday. We even managed to have 2 of her best friends and her sister fly in! The food was great, I should know I made it, and the company was better. Now we have to go pick up all the tables from the aftermath! Then, not sure what we're doing today. Probably trying to finish repairing Grace's ceiling now that things have dried out.
Claire's surgery has been scheduled for June 30th, although if they get an opening they will move her up to this coming week. We are looking at a minimum of 2hrs, but if the other 2 procedures need to be done then it could go to 4-5hr surgery. And she will be in the hospital a minimum of 5 days. Poor peanut, but if this helps than I can't argue too much about that. I do feel bad that she'll spend the 4th of July in the hospital. That's kind of a big family day for us.
Claire's surgery has been scheduled for June 30th, although if they get an opening they will move her up to this coming week. We are looking at a minimum of 2hrs, but if the other 2 procedures need to be done then it could go to 4-5hr surgery. And she will be in the hospital a minimum of 5 days. Poor peanut, but if this helps than I can't argue too much about that. I do feel bad that she'll spend the 4th of July in the hospital. That's kind of a big family day for us.
Wednesday, June 16, 2010
A little, ok a lot, about our miracles...
My husband and I met almost 10yrs ago working at Six Flags in Colorado. I was on the medical team and he was a security supervisor. It was definetly love at first sight! We married Sept of 2002, and were blessed with Ben about 6mos later.
Ben, he's 7 now, and the funniest kid. He loves to make his little brother and baby sister laugh. As he told me one day he is "very interested in the universe and baseball" Can't argue with that! Ben is in his first year of coach pitch, and enjoys taunting his Dad because of his awful pitching. One thing that makes Ben extrodinary is that he lives his life with Asperger Syndrome. He also deals with some pretty tough Sensory Problems along with Crippling Anxiety. Despite all of that, he has some good friends, and is the most loving child I've seen. He does receive therapy and some medication to help his function with daily life, and he is doing amazing. Ben will be starting 2nd grade in August, and he can't wait!
Next we have Princess Grace, she is quite the Daddy's girl. Fortunatly she is completely healthy, although she has a hard time understanding why she doesn't go to the Dr all the time. We make sure to give her some extra attention, as do her friends, aunts and grandparents. Grace currently has her heart set on painting her room purple so we are going to see if we can find a color everyone can agree on. She is my little mother, and has been so amazing when I need her help. She was even able to call her Daddy one day when I was too sick to get to the phone, she is definitly my hero!
Now to the first of our trouble makers. Sammers, my little monkey man. We don't know what's going on with Sam. He seemed fine after he was born, but at 2mos old my mom noticed that his left arm was turning in a bit funny. Per his pediatrician we took him for an occupational therapy evaluation. Turns out the entire left side of his body was weak. He also had some trouble with swallowing, and was just generally a bit delayed. Sam used to zone out, but we didn't think much of it at the time. When Sam was 13mos old we witnessed a grand mal seizure. He was taken for an EEG and we were told that it was abnormal and our beautiful boy had epilepsy. We were devastated, but determined to make sure he had the best life possible. For awhile Sam's seizures seemed to be well controlled and he was thriving, that is until spring of 2009. Sam started having seizure after seizure, and there was nothing we could do. He earned himself two rides in an ambulance, and several ER trips. In June of 2009 Sam had the worst seizure yet. He doesn't have your typical seizure. He goes completely limp and blank, can't swallow, and can't respond. In June of 2009 he had a seizure at Chik-Fil-A. We had to call an ambulance. They took us to the ER and he got Ativan. Afterwards he couldn't walk. We thought it was just an odd reaction to the ativan, although he'd had it before. Later that evening he started screaming, and couldn't recognize that we were there with him. He then went completely unresponsive. His pupils were pinpoint and unreactive to light and we could get no response from him, even with painful stimuli. I took him back to the ER and he was admitted. He went in and out of a coma three times. We were there for 8days, and they were able to catch a seizure on the EEG. Turns out what we were seeing was not in fact seizures, and had probably never been seizures. Talk about a punch to the gut. He was pulled off all his seizure meds and initially seemed to be ok. Then we started seeing more and more episodes. They all looked identical to what we thought of as seizures. Sam was spiraling downhill right in front of our eyes. At this point we became very involved with Genetics. Dr Sharer, his geneticist, made the decision to admit him and ultimately put a G-Tube in. Since his tube was placed he has not had one episode. Now, he isn't growing, but at least the episodes have stopped. At almost 4 he weighs 28lbs and wears 24mos clothes. It is now believed that he has a mitochondrial disorder, although which one we aren't sure yet. He doesn't seem to digest, store, and use energy correctly at a cellular level. We are waiting on yet more test results.
And our last troublemaker, Miss Claire. She is almost 2 1/2 and full of attitude! Claire has had trouble since she was born. She was not a preemie, however she acted like one. She had a lot of trouble eating, and severe reflux. She was also severely delayed in her milestones. At first we thought it was because of her reflux. At 5 1/2mos old she had surgery to place a Nissen, which was to stop her reflux. She also had a g-tube placed. We thought all our worries were over and she'd catch up in no time. Turns out we were wrong. She is still delayed, has a lot of trouble eating, her stomach doesn't empty correctly, and she is a tiny thing at 22lbs (12mos clothes) It is also believed that she is suffering from the same mitochondrial disorder as her brother.
So, in a very large nutshell, those are my babies. We also have a dog, 2 fish and 3 cats so it's a bit of a zoo here!
Ben, he's 7 now, and the funniest kid. He loves to make his little brother and baby sister laugh. As he told me one day he is "very interested in the universe and baseball" Can't argue with that! Ben is in his first year of coach pitch, and enjoys taunting his Dad because of his awful pitching. One thing that makes Ben extrodinary is that he lives his life with Asperger Syndrome. He also deals with some pretty tough Sensory Problems along with Crippling Anxiety. Despite all of that, he has some good friends, and is the most loving child I've seen. He does receive therapy and some medication to help his function with daily life, and he is doing amazing. Ben will be starting 2nd grade in August, and he can't wait!
Next we have Princess Grace, she is quite the Daddy's girl. Fortunatly she is completely healthy, although she has a hard time understanding why she doesn't go to the Dr all the time. We make sure to give her some extra attention, as do her friends, aunts and grandparents. Grace currently has her heart set on painting her room purple so we are going to see if we can find a color everyone can agree on. She is my little mother, and has been so amazing when I need her help. She was even able to call her Daddy one day when I was too sick to get to the phone, she is definitly my hero!
Now to the first of our trouble makers. Sammers, my little monkey man. We don't know what's going on with Sam. He seemed fine after he was born, but at 2mos old my mom noticed that his left arm was turning in a bit funny. Per his pediatrician we took him for an occupational therapy evaluation. Turns out the entire left side of his body was weak. He also had some trouble with swallowing, and was just generally a bit delayed. Sam used to zone out, but we didn't think much of it at the time. When Sam was 13mos old we witnessed a grand mal seizure. He was taken for an EEG and we were told that it was abnormal and our beautiful boy had epilepsy. We were devastated, but determined to make sure he had the best life possible. For awhile Sam's seizures seemed to be well controlled and he was thriving, that is until spring of 2009. Sam started having seizure after seizure, and there was nothing we could do. He earned himself two rides in an ambulance, and several ER trips. In June of 2009 Sam had the worst seizure yet. He doesn't have your typical seizure. He goes completely limp and blank, can't swallow, and can't respond. In June of 2009 he had a seizure at Chik-Fil-A. We had to call an ambulance. They took us to the ER and he got Ativan. Afterwards he couldn't walk. We thought it was just an odd reaction to the ativan, although he'd had it before. Later that evening he started screaming, and couldn't recognize that we were there with him. He then went completely unresponsive. His pupils were pinpoint and unreactive to light and we could get no response from him, even with painful stimuli. I took him back to the ER and he was admitted. He went in and out of a coma three times. We were there for 8days, and they were able to catch a seizure on the EEG. Turns out what we were seeing was not in fact seizures, and had probably never been seizures. Talk about a punch to the gut. He was pulled off all his seizure meds and initially seemed to be ok. Then we started seeing more and more episodes. They all looked identical to what we thought of as seizures. Sam was spiraling downhill right in front of our eyes. At this point we became very involved with Genetics. Dr Sharer, his geneticist, made the decision to admit him and ultimately put a G-Tube in. Since his tube was placed he has not had one episode. Now, he isn't growing, but at least the episodes have stopped. At almost 4 he weighs 28lbs and wears 24mos clothes. It is now believed that he has a mitochondrial disorder, although which one we aren't sure yet. He doesn't seem to digest, store, and use energy correctly at a cellular level. We are waiting on yet more test results.
And our last troublemaker, Miss Claire. She is almost 2 1/2 and full of attitude! Claire has had trouble since she was born. She was not a preemie, however she acted like one. She had a lot of trouble eating, and severe reflux. She was also severely delayed in her milestones. At first we thought it was because of her reflux. At 5 1/2mos old she had surgery to place a Nissen, which was to stop her reflux. She also had a g-tube placed. We thought all our worries were over and she'd catch up in no time. Turns out we were wrong. She is still delayed, has a lot of trouble eating, her stomach doesn't empty correctly, and she is a tiny thing at 22lbs (12mos clothes) It is also believed that she is suffering from the same mitochondrial disorder as her brother.
So, in a very large nutshell, those are my babies. We also have a dog, 2 fish and 3 cats so it's a bit of a zoo here!
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