4 years ago
Sunday, March 28, 2010
Joshua's Birthday
Joshua turned 12 this week! It's so hard to believe 12 years ago we brought him home from the hospital...not having any clue what might be in store for him. It was very exciting (and emotional) today to watch him be ordained to the office of Deacon and he is already fulfilling his duties. I've loved his enthusiasm as he awaited this day. He is a great kid! Happy Birthday Joshua!
Monday, March 15, 2010
More Matthew Updates
Tuesday is the writing of the IEP day at school (FINALLY!). We did get the Adaptive Phy Ed Teacher in there sooner so the boy doesn't kill himself trying to keep up while waiting for his pacemaker.
Matthew is scheduled for his heart cath on April 8th. Surgery will be scheduled after that based on their findings. Still kind of hoping we can wait until school lets out. But, we know he is going to feel so much better when it's done soooo...kind of wish they would get it done with.
Results are in from Endocrinology...he did fail his growth hormone test which means that he is not making his own and will not grow without growth hormone replacement. That means that after heart surgery, we will begin daily injections of growth hormone until he is done growing. A lot like Isaac's insulin shots only Matthew will only get one a day. I read that you can grow anywhere from 2 to 6 inches in the first year depending on how far behind you are. I can't imagine Matthew growing! The manager at IHOP asked if Isaac - the 2 year old - and Matthew - the 9 year old - were twins. Poor guy! We get that all the time with Noah and Matthew, but now Isaac!?! We have to do this! There are some scary things but there are some great things that can come from this replacement...so we're keeping our fingers crossed - hoping we are doing the right thing.
We did see the Pediatrician for hair loss and he says it seems to just be stress. Hahaha! I laughed and said, Matthew, you're not stressed, are you? I still think it is his thyroid! His last TSH was 4.46, but what do I know?
We had a rough day last week with the hockey tournament happening at school and Matthew not able to participate. It's frustrating because we had to put him on these restrictions because the gym teacher doesn't understand what to do with him apparently. So, I took Matthew out for breakfast (not easy trying to find a fat-free food in a restaurant - but we did pretty good) and then we still got to the school kind of early. We watched the last game and Matthew had so much anxiety about it. He was emotional and it was just hard! His class ended up winning the tournament and they were in the air, screaming and having fun celebrating. It was very hard to have Matthew watching that and not be a part of it! Those are kind of slaps in the face...you're child is not normal and he is hurting because of it. It breaks my heart!
Every now and then, I make the mistake of reading other fellow heart patients blogs. I am absolutely amazed that we have Matthew HERE and doing fairly OK. That so much more could have gone wrong and he is one huge walking miracle! We feel today that his life is very fragile and he relies on so many things to make it keep working...it's scary! But, we know that our Father in Heaven is in control and we trust Him! When we are headed in to surgery it is a whole lot easier to enjoy every moment together because of the WHAT IF SYNDROME I seem to be plagued with!!! We are VERY grateful for the time we have been given and hope there is a LOT more of it!
Matthew is scheduled for his heart cath on April 8th. Surgery will be scheduled after that based on their findings. Still kind of hoping we can wait until school lets out. But, we know he is going to feel so much better when it's done soooo...kind of wish they would get it done with.
Results are in from Endocrinology...he did fail his growth hormone test which means that he is not making his own and will not grow without growth hormone replacement. That means that after heart surgery, we will begin daily injections of growth hormone until he is done growing. A lot like Isaac's insulin shots only Matthew will only get one a day. I read that you can grow anywhere from 2 to 6 inches in the first year depending on how far behind you are. I can't imagine Matthew growing! The manager at IHOP asked if Isaac - the 2 year old - and Matthew - the 9 year old - were twins. Poor guy! We get that all the time with Noah and Matthew, but now Isaac!?! We have to do this! There are some scary things but there are some great things that can come from this replacement...so we're keeping our fingers crossed - hoping we are doing the right thing.
We did see the Pediatrician for hair loss and he says it seems to just be stress. Hahaha! I laughed and said, Matthew, you're not stressed, are you? I still think it is his thyroid! His last TSH was 4.46, but what do I know?
We had a rough day last week with the hockey tournament happening at school and Matthew not able to participate. It's frustrating because we had to put him on these restrictions because the gym teacher doesn't understand what to do with him apparently. So, I took Matthew out for breakfast (not easy trying to find a fat-free food in a restaurant - but we did pretty good) and then we still got to the school kind of early. We watched the last game and Matthew had so much anxiety about it. He was emotional and it was just hard! His class ended up winning the tournament and they were in the air, screaming and having fun celebrating. It was very hard to have Matthew watching that and not be a part of it! Those are kind of slaps in the face...you're child is not normal and he is hurting because of it. It breaks my heart!
Every now and then, I make the mistake of reading other fellow heart patients blogs. I am absolutely amazed that we have Matthew HERE and doing fairly OK. That so much more could have gone wrong and he is one huge walking miracle! We feel today that his life is very fragile and he relies on so many things to make it keep working...it's scary! But, we know that our Father in Heaven is in control and we trust Him! When we are headed in to surgery it is a whole lot easier to enjoy every moment together because of the WHAT IF SYNDROME I seem to be plagued with!!! We are VERY grateful for the time we have been given and hope there is a LOT more of it!
Thursday, March 11, 2010
"The Elephants Child" starring Matthew
Ok - not starring Matthew but he was in it. "The Elephants Child" is a story about how elephants got their trunks. A curious little elephant wants to know what a crocodile eats for dinner. She goes on an adventure and finds the crocodile to ask him what he eats for dinner. The crocodile tells her to come closer and grabs on to her nose. She pulls and pulls and all of her friends come and pull and pull and free her from the crocodile. Now she has a long nose.
This is the first play the elementary school has done and it originally was only open to the 4th and 5th graders to sign up for it. At the last minute they opened it up to 3rd graders and Matthew was SUPER excited about it. On the first day of practice, Matthew explained that he didn't want a speaking part because he wanted to do more of the "acting". So, I think he was a little disappointed to be the drummer and part of the choir but it was perfect for his first play. They practiced hard for 2 months and then we enjoyed the production this last Tuesday. They did a fantastic job! Matthew of course was so cute!
(So of course this post has been sitting here waiting for almost a week to post and I can't get my video to work. I will have to post without and hopefully get the video up later this week. So frustrating!)
This is the first play the elementary school has done and it originally was only open to the 4th and 5th graders to sign up for it. At the last minute they opened it up to 3rd graders and Matthew was SUPER excited about it. On the first day of practice, Matthew explained that he didn't want a speaking part because he wanted to do more of the "acting". So, I think he was a little disappointed to be the drummer and part of the choir but it was perfect for his first play. They practiced hard for 2 months and then we enjoyed the production this last Tuesday. They did a fantastic job! Matthew of course was so cute!
(So of course this post has been sitting here waiting for almost a week to post and I can't get my video to work. I will have to post without and hopefully get the video up later this week. So frustrating!)
Monday, March 1, 2010
NEWS
Not the kind of news we like. Matthew will be having his 6th heart surgery... probably this summer; so he doesn't have to miss school. The plan right now is to repair his aorta which is narrowed and put in a pacemaker. He will be presented in conference in 3 weeks. They will schedule a catheterization to see if there is anything else they need to fix up while in there and then do surgery. His heart function looks good so this is not urgent.
OK - so to clarify, Sara's comment; the actual heart contraction is nice and strong and blood flow is good. There is no function for those 4 seconds because his lower chamber is firing before the upper chamber and so it confuses everything and has to reset itself, I think. It's just a short in the electrical system but the machine is still good.
OK - so to clarify, Sara's comment; the actual heart contraction is nice and strong and blood flow is good. There is no function for those 4 seconds because his lower chamber is firing before the upper chamber and so it confuses everything and has to reset itself, I think. It's just a short in the electrical system but the machine is still good.
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