Finally, finally, FINALLY, Matt was approved to start Growth Hormone. His last bloodwork came back with his GH at an 88. Boys Matt's age should have GH somewhere in the 300-400 range. While Matt is a big kid, he hasn't grown very much at all in two years - and this during a time when boys should be growing several inches per year! Our biggest reasons for wanting to get Matt on GH were not so much height, but rather:
More enegry
Better muscle tone
General sense of well-being
Improved blood sugar
Better management of cholesterol
Weight management (hopefully!)
Matt's energy level has been very low. He is always a good sport to exercise or come along with us whenever we are doing something active, but he would frequently fall asleep or become extremely fatigued after only a short amount of activity. Of course, part of this is related to his weight, but his symptoms are more severe than another overweight child. He also has such low muscle tone that it is difficult for him to move his body in normal ways. For instance, he can barely pull himself up into the Jeep. He cannot pull himself up into the tube when we are out boating and he can't pull himself up out of a swimming pool - all very normal things 11 year old boys should be able to do. This feeling of lethargy and general ickyness has been a real challenge! Again, it's not that Matt is unwilling to do any of these things, it's that when he does do these things, you can tell it's truly a miserable and uncomfortable experience for him. Also, at his last Pediatrician visit, they checked his cholesterol level. It was so high it was undetectable on their machine. It wasn't until we actually received the Growth hormone and I was looking over all of the information that I learned GH plays a critical role in managing cholesterol and blood sugar! Yay! I am anxious to see how GH helps with each of these issues but it already seems to be making a difference. Matt is wanting to go outside and play without us prodding. He is trying to exercise and he and I are actually 'training' for a 5K! We are using the 'couch to 5K' program and amazingly, he seems to be doing fine with it! He hasn't needed a nap on days we run/walk.
Today I took my kids, along with my 2 sisters in law and their kids to a new 'splash pad' park in the next town over. Matthew was in a good mood and was running through the sprinklers and having a wonderful time. I actually got all teary watching him. He was just enjoying the sprinklers with a big smile, but he was doing something active and something fun and he was enjoying the experience.
Thank you Growth Hormone - I really feel like you are helping me to get my little boy back!
Thursday, July 22, 2010
Tuesday, April 27, 2010
Woo-Hoo!
Just a quick note to mention that today we learned Matt's tumor is STILL STABLE! That's pretty fabulous news! We scheduled another MRI in 3 months, and then will discuss waiting 6 months before doing the one after that. I just LOVE it! Dr.Walker is always amazed at Matt's progress and health. It thrills him to see Matthew excelling in school and having a functional memory. I also think that Matt is just a fun kid to have as a patient. He is positive and upbeat, doesn't complain, and expresses gratitude to his doctors for all they have done. He cracks jokes with the doctors and is very laid back about any procedures that need to be done. Today, while he was getting an IV he went on and on about how it's no big deal if they need to poke him again because he gets lots of blood draws and he knows they are doing the best that they can, etc... He really wins over the nurses and lab techs! :)
Just another quick note about Matt. He was named the 'Student of the Month' for 6th grade at his middle school for April. It is really an honor! There are 1,400 kids at Matt's school. They choose 3 from each grade each month during the school year. That means only about 240 children are chosen as 'student of the month' during their time at the school. Matt has been nominated several times through the year, and this time he won! I guess that every teacher nominates one child per month and then once the nominations are in, the list of nominees are sent around to all of the teachers and the teachers vote to determine which children win. Matt was invited to a special ceremony and lunch with the school administrators and counselors. Warren and I were invited, and attended, as well. The principal spoke about the program and awarded each of the children a special certificate along with a gift card for $25 to Hastings (a local book/music/video game store). A local restaurant catered the lunch, which was held in the media center, and then that restaurant also gave each of the kids a gift certificate. It was a great experience and I am so proud of my boy! He works extremely hard at all he does and it shows!
Just another quick note about Matt. He was named the 'Student of the Month' for 6th grade at his middle school for April. It is really an honor! There are 1,400 kids at Matt's school. They choose 3 from each grade each month during the school year. That means only about 240 children are chosen as 'student of the month' during their time at the school. Matt has been nominated several times through the year, and this time he won! I guess that every teacher nominates one child per month and then once the nominations are in, the list of nominees are sent around to all of the teachers and the teachers vote to determine which children win. Matt was invited to a special ceremony and lunch with the school administrators and counselors. Warren and I were invited, and attended, as well. The principal spoke about the program and awarded each of the children a special certificate along with a gift card for $25 to Hastings (a local book/music/video game store). A local restaurant catered the lunch, which was held in the media center, and then that restaurant also gave each of the kids a gift certificate. It was a great experience and I am so proud of my boy! He works extremely hard at all he does and it shows!
Sunday, April 25, 2010
MRI day Tuesday!
So, this Tuesday is an MRI day for Matt. We are still on an every 3 month MRI schedule and I suspect that we'll stay that way for a while longer. Matt has the go-ahead to begin growth hormone from both our local Endo. and Dr.Lustig. Since there is some concern that GH might make the tumor grow, I bet they'll want to keep monitoring him closely. To be clear, there is no PROOF that indicates brain tumors feed on GH, but, of course, there are children who have brain tumors, who go on GH and whose tumors subsequently grow. Out of an abundance of caution, we have waited almost 18 months with a stable tumor before beginning GH. There are doctors who refuse to prescribe GH to children with brain tumors. We have very very carefully weighed this decision and feel like the benefits outway the risks. I always come back to something I heard when Matt was first diagnosed.
There is no point in saving a child's life if you don't allow them to live it.
I try to remember that mantra whenever I start panicking over Matt's health concerns, or begin to weigh what's best for Matt and am giving too much weight to his brain tumor. Of course, it is always a factor, but I don't want it to be the only factor. After 3 years of dealing with this, I think I've started to think of it as a part of him. Just one more trait of my boy that makes him who he is. It has positive and negative impacts, just like any other aspect of any of my children. We try to take it in stride, not solely focusing on it on a day to day basis, but still adding in the things that need to be done on a regular basis - things like blood draws, doctor visits with many specialists, and quarterly MRI's. It's part of who we are.
The 48 hours before an MRI are aggravating and terrifying. On the one hand, we are hopeful and optimistic, as the past 6 MRI's have been stable and have looked wonderful. On the other hand, we are always well aware that the beast in Matt's brain may decide to grow.
So, here yet again, I shamelessly ask for your prayers and thoughts over the next 2 days. They've worked wonderfully so far - so why mess with a good thing?? :)
Love,
Alli
There is no point in saving a child's life if you don't allow them to live it.
I try to remember that mantra whenever I start panicking over Matt's health concerns, or begin to weigh what's best for Matt and am giving too much weight to his brain tumor. Of course, it is always a factor, but I don't want it to be the only factor. After 3 years of dealing with this, I think I've started to think of it as a part of him. Just one more trait of my boy that makes him who he is. It has positive and negative impacts, just like any other aspect of any of my children. We try to take it in stride, not solely focusing on it on a day to day basis, but still adding in the things that need to be done on a regular basis - things like blood draws, doctor visits with many specialists, and quarterly MRI's. It's part of who we are.
The 48 hours before an MRI are aggravating and terrifying. On the one hand, we are hopeful and optimistic, as the past 6 MRI's have been stable and have looked wonderful. On the other hand, we are always well aware that the beast in Matt's brain may decide to grow.
So, here yet again, I shamelessly ask for your prayers and thoughts over the next 2 days. They've worked wonderfully so far - so why mess with a good thing?? :)
Love,
Alli
Wednesday, April 14, 2010
Me, me, ME, it was all about MEEEEE.........
Warren & I just returned from a trip to Chicago. A trip in which 6 things were missing. Six beautiful, boisterous, wonderful, demanding things were missing from this grand adventure. After several months of planning and debating and on again off again drama (they kept changing the date of Warren's meetings!) Warren and I escaped, sans children for six glorious days. Don't get me wrong, I adore my children. I seldom leave them. If you take out Matthew's hospital stays, I never leave them. We have gone on little mini vacations 3 or 4 times by ourselves and it is just fantastic. I know that sounds bad - like I am desperate to escape my life. Nothing could be further from the truth. When I escape for a few days, I come back recharged, am more patient with the little people in my life, and feel more blessed than I did before I left. Also, I think about them almost constantly while I am away. It's so funny! On Saturday we did something we had never done, despite many visits to Chicago and living there for 2 years. We went and had lunch on the 95th floor of the Hancock building. The views were amazing! I know it's a touristy thing to do, but it was fun. All I could think about, though, was that next time we are in Chicago as a family, I am bringing the boys (and girl, of course!) to lunch there. They would go crazy with delight! :)
I can't tell you how rejuvenating it is to spend 6 days doing nothing - or whatever you like. There was not a thought about whether we should eat at a certain restaurant because we were uncertain if they had highchairs. There was no haggling about which movies to see. There was no early morning wake up call (except the ones we requested from the front desk). There WAS an obscenely expensive dinner at Charlie Trotters (not doing that again......), two movies in a ROW (how long has it been since you saw two movies back to back?), a midnight waffle house run at an all-night diner, 4 novels, and lots of shopping (my favorite thing, not so much for Warren, but he was a great sport). Today was our first day back and I feel so happy and lucky and well-rested. The little things that went wrong (lost luggage, almost missed our flight), are much easier to deal with because I had a break. YAY! :)
I can't tell you how rejuvenating it is to spend 6 days doing nothing - or whatever you like. There was not a thought about whether we should eat at a certain restaurant because we were uncertain if they had highchairs. There was no haggling about which movies to see. There was no early morning wake up call (except the ones we requested from the front desk). There WAS an obscenely expensive dinner at Charlie Trotters (not doing that again......), two movies in a ROW (how long has it been since you saw two movies back to back?), a midnight waffle house run at an all-night diner, 4 novels, and lots of shopping (my favorite thing, not so much for Warren, but he was a great sport). Today was our first day back and I feel so happy and lucky and well-rested. The little things that went wrong (lost luggage, almost missed our flight), are much easier to deal with because I had a break. YAY! :)
Monday, March 29, 2010
Options, options, options..... But what's the right thing to do???
Well, Matt and I had a whirlwind trip to SF a few weeks ago. It was really quite fun to go with just him. We were gone for 36 hours exactly. We arrived Tuesday afternoon and spent a few hours wandering around SF. We also went out to dinner, to a CREME PUFF shop that was next door to our hotel and then I took him to see Avatar in 3D - there was a theater directly across from our hotel. The next morning we woke up, had breakfast, wandered around for another hour or two and then headed over to the medical center for Matt's appointments. After his appointments we caught a cab and headed directly to the airport and home!
(Here's Matt in the cab on the way to his appointments. We were laughing because his hair was blowing and standing straight up!)
Dr.Lustig was happy to see us and teased Matt since last time we had an appointment with him, we had to meet him at the hospital due to them finding more blood clots and Matt landing himself in ICU. That was an adventure. This time went much more smoothly. We went fully intending to schedule a time to do the vagotomy. Dr.Lustig is still on board with Matt having the vagotomy. However, as I've mentioned before, it is very experimental - 4 children have had it and have follow up stats for a year. I guess Matt is part of an elite group! :) After we met with Dr.Lustig, we went to go see Dr.Farmer. She is the surgeon who would actually perform the vagotomy. She still does not want Matt to have the vagotomy. She thinks he is doing too well to perform such an experimental procedure. In other words, he doesn't have any obesity related diseases...... yet. She does agree that the issue of the hypothalamic obesity needs to be addressed and she suggested Lap Band surgery. It causes a very gradual weight loss and is reversible. I like both of those things. However, it is unclear whether lap band will work on kids with HO since their weight gain or loss does not seem to respond to diet and exercise in any normal way. So, now I'm researching Lap Band. I just contacted a doctor in DC who authored a study on Lap Band surgery in adolescents. I wanted to know if any of the participants in the study suffered from brain tumors/injury to the hypothalamus or pituitary. I heard back from him right away - he seems truly amazing, as well! None of the subjects in the study had HO. He is going to call me on April 5th to discuss whether he thinks Lap Band might be a good option for Matt. By the way, isn't the internet amazing?? I LOVE having access to these doctors that specialize in Matt's complicated issues. Overall, they are amazingly responsive and kind!
So, now I'm back to the same point I've been for the past year. What to do???
Do we do the vagotomy? (experimental, permanent)
Do we do a lap band surgery? (experimental in kids with HO, reversible)
Do we just put him on Growth hormone and think about it for a few more months? (may not address weight issue, will likely make him FEEL much better)
Do we do nothing and just let him gain 100 more pounds this year - all the while watching his younger brothers out eat him at every meal....? (not really an option.......)
My decision wavers almost every single day. Today I'm feeling like Growth hormone is the way to go. We can see if that helps his weight loss and muscle building and energy. If we start the GH, we need to wait 6 months before we do anything else to treat the obesity. Is pushing off treatment a good thing because it would buy us some time? Or is it a bad thing because we are delaying treatment that needs to be started sooner?
Warren and I both feel so conflicted!
(Here's Matt in the cab on the way to his appointments. We were laughing because his hair was blowing and standing straight up!)
Dr.Lustig was happy to see us and teased Matt since last time we had an appointment with him, we had to meet him at the hospital due to them finding more blood clots and Matt landing himself in ICU. That was an adventure. This time went much more smoothly. We went fully intending to schedule a time to do the vagotomy. Dr.Lustig is still on board with Matt having the vagotomy. However, as I've mentioned before, it is very experimental - 4 children have had it and have follow up stats for a year. I guess Matt is part of an elite group! :) After we met with Dr.Lustig, we went to go see Dr.Farmer. She is the surgeon who would actually perform the vagotomy. She still does not want Matt to have the vagotomy. She thinks he is doing too well to perform such an experimental procedure. In other words, he doesn't have any obesity related diseases...... yet. She does agree that the issue of the hypothalamic obesity needs to be addressed and she suggested Lap Band surgery. It causes a very gradual weight loss and is reversible. I like both of those things. However, it is unclear whether lap band will work on kids with HO since their weight gain or loss does not seem to respond to diet and exercise in any normal way. So, now I'm researching Lap Band. I just contacted a doctor in DC who authored a study on Lap Band surgery in adolescents. I wanted to know if any of the participants in the study suffered from brain tumors/injury to the hypothalamus or pituitary. I heard back from him right away - he seems truly amazing, as well! None of the subjects in the study had HO. He is going to call me on April 5th to discuss whether he thinks Lap Band might be a good option for Matt. By the way, isn't the internet amazing?? I LOVE having access to these doctors that specialize in Matt's complicated issues. Overall, they are amazingly responsive and kind!
So, now I'm back to the same point I've been for the past year. What to do???
Do we do the vagotomy? (experimental, permanent)
Do we do a lap band surgery? (experimental in kids with HO, reversible)
Do we just put him on Growth hormone and think about it for a few more months? (may not address weight issue, will likely make him FEEL much better)
Do we do nothing and just let him gain 100 more pounds this year - all the while watching his younger brothers out eat him at every meal....? (not really an option.......)
My decision wavers almost every single day. Today I'm feeling like Growth hormone is the way to go. We can see if that helps his weight loss and muscle building and energy. If we start the GH, we need to wait 6 months before we do anything else to treat the obesity. Is pushing off treatment a good thing because it would buy us some time? Or is it a bad thing because we are delaying treatment that needs to be started sooner?
Warren and I both feel so conflicted!
Monday, March 08, 2010
The good, the bad, and the ugly. :)
Last week Matt had a visit to PCMC to check up on his blood clots.
The GOOD news is that he was cleared to stop the Lovenox shots. He's given himself two injections daily for 6 months - that's approximately 360 injections! He's been a trooper and we figure it's good preparation for the growth hormone that will be started sooner or later and is also given via injection. :)
The BAD news is that if he ever clots again, he will need to remain on Lovenox or another blood thinner (like Cumiden) for the rest of his life. This is because they do not know what caused the clots. Matt has many risk factors. Besides his weight, he is on two medications that increase the risks of clotting - DDAVP and his steroids. Being dehydrated can cause clotting. Simply having a malignancy somewhere in your body increases the chances of a blood clot. Matt's hematologist believes Matt's clots were not due to one single issue, but they all contributed. We shall see! For now, though, he is injection free and we aren't really missing those shots one bit!
The UGLY. Well, I don't really have an ugly! Okay, so this is sort of ugly..... A few weeks ago I called San Francisco to make an appointment with Dr.Lustig - a pre-surgery appointment. His next available opening wasn't until August. His office lady said she was going to see about scheduling Matt for endocrine with Dr.Lustig along with surgery to discuss things - and hopefully get him in earlier than 6 months in the future! Last week I realized I hadn't heard anything back from them, so I thought I would call and check up on things. Apparently, they went ahead and made us an appointment....... for March 10th! Don't you think we would have liked to know this? We ARE flying in from out of state for the appointment! Thankfully, we were able to get a quick flight & hotel and Matt and I are going to SF this week. Warren was already scheduled to be in Chicago for work, so he can't make it to SF. I'm anxious and excited to speak more in-depth about the surgery and schedule a time for it to happen. Now that we've decided to go ahead and do the surgery, I'm anxious to get this show on the road! Matt seems to be doing very very well at the moment and I think it's a good time to do this minor procedure.
Randomness alert, Randomness alert! Absolutely not relating to the above information at all, this is our new, wildly entertaining time-waster. On our iPhones, we have this app that lego-izes any photo. You can take a new photo, or use a photo already on your phone. Awesome, huh?!? It also makes a very satisfying clicking sound when you push the button to turn your photo into a lego collage. The very best part is that the app is free. Yea for free entertainment!
The GOOD news is that he was cleared to stop the Lovenox shots. He's given himself two injections daily for 6 months - that's approximately 360 injections! He's been a trooper and we figure it's good preparation for the growth hormone that will be started sooner or later and is also given via injection. :)
The BAD news is that if he ever clots again, he will need to remain on Lovenox or another blood thinner (like Cumiden) for the rest of his life. This is because they do not know what caused the clots. Matt has many risk factors. Besides his weight, he is on two medications that increase the risks of clotting - DDAVP and his steroids. Being dehydrated can cause clotting. Simply having a malignancy somewhere in your body increases the chances of a blood clot. Matt's hematologist believes Matt's clots were not due to one single issue, but they all contributed. We shall see! For now, though, he is injection free and we aren't really missing those shots one bit!
The UGLY. Well, I don't really have an ugly! Okay, so this is sort of ugly..... A few weeks ago I called San Francisco to make an appointment with Dr.Lustig - a pre-surgery appointment. His next available opening wasn't until August. His office lady said she was going to see about scheduling Matt for endocrine with Dr.Lustig along with surgery to discuss things - and hopefully get him in earlier than 6 months in the future! Last week I realized I hadn't heard anything back from them, so I thought I would call and check up on things. Apparently, they went ahead and made us an appointment....... for March 10th! Don't you think we would have liked to know this? We ARE flying in from out of state for the appointment! Thankfully, we were able to get a quick flight & hotel and Matt and I are going to SF this week. Warren was already scheduled to be in Chicago for work, so he can't make it to SF. I'm anxious and excited to speak more in-depth about the surgery and schedule a time for it to happen. Now that we've decided to go ahead and do the surgery, I'm anxious to get this show on the road! Matt seems to be doing very very well at the moment and I think it's a good time to do this minor procedure.
Randomness alert, Randomness alert! Absolutely not relating to the above information at all, this is our new, wildly entertaining time-waster. On our iPhones, we have this app that lego-izes any photo. You can take a new photo, or use a photo already on your phone. Awesome, huh?!? It also makes a very satisfying clicking sound when you push the button to turn your photo into a lego collage. The very best part is that the app is free. Yea for free entertainment!
Monday, March 01, 2010
All about ME!!!
My name is Audrey.
I am 9 months old (I know, my mom can't believe it, either!)
I have two teeth.
I love it when my mommy puts my hair in pigtails - everyone says it's sooooooo cute!
Daddy is always saying mommy is, "out of control" when I am wearing fancy things like this coat. I don't know what he means.........
I am almost mobile. I just can't quite figure out how to make myself go forward!
I love feeding myself - pureed foods are SO yesterday!
My Lacey blankie makes me happy (Lacey is a very nice friend of mommy & daddy and she made my favorite blankie). I also love my Violet. She sings me to sleep every night.
One day mommy tried curling my hair with sponge rollers. Let's just say it wasn't a good look for me.
I pretty much have everyone wrapped around my pudgy little finger - especially Grandpa Ray!
I am 9 months old (I know, my mom can't believe it, either!)
I have two teeth.
I love it when my mommy puts my hair in pigtails - everyone says it's sooooooo cute!
Daddy is always saying mommy is, "out of control" when I am wearing fancy things like this coat. I don't know what he means.........
I am almost mobile. I just can't quite figure out how to make myself go forward!
I love feeding myself - pureed foods are SO yesterday!
My Lacey blankie makes me happy (Lacey is a very nice friend of mommy & daddy and she made my favorite blankie). I also love my Violet. She sings me to sleep every night.
One day mommy tried curling my hair with sponge rollers. Let's just say it wasn't a good look for me.
I pretty much have everyone wrapped around my pudgy little finger - especially Grandpa Ray!
Saturday, February 20, 2010
I LOVE Bountiful Baskets!
If you haven't heard of this co-op, you have to look them up! (www.bountifulbaskets.org) You make a 'contribution' to the co-op with your credit card, usually on Tuesday or Wednesday, and the next Saturday get to pick up a laundry basket full of fresh fruits and vegetables. The basic basket is only $15 and I've found the quality to be excellent. Today I went and picked up my basket. Here is what was part of one basket.
It included bananas, celery, sweet potatoes, butternut squash, brown pears, baby carrots, spinach, oranges, apples, broccoli, pummellos and tomatoes - and probably some stuff I'm accidentally leaving out. :)
I also added a 5 loaf pack of 9-grain bread, a 3 loaf pack of cinnamon raisin bread, and a 4 loaf pack of rye bread. All excellent! The bread added $21 to my total cost for this contribution. I spent $36 on what you see. AND, we got pummellos - I've never had a pumello. We're trying new fruits and veggies and eating healthier since starting Bountiful Baskets. YEA!
P.S. Never mind my 2 year old in the background of the photo holding toilet paper. LOL! He was using the packages as 'cars'!
It included bananas, celery, sweet potatoes, butternut squash, brown pears, baby carrots, spinach, oranges, apples, broccoli, pummellos and tomatoes - and probably some stuff I'm accidentally leaving out. :)
I also added a 5 loaf pack of 9-grain bread, a 3 loaf pack of cinnamon raisin bread, and a 4 loaf pack of rye bread. All excellent! The bread added $21 to my total cost for this contribution. I spent $36 on what you see. AND, we got pummellos - I've never had a pumello. We're trying new fruits and veggies and eating healthier since starting Bountiful Baskets. YEA!
P.S. Never mind my 2 year old in the background of the photo holding toilet paper. LOL! He was using the packages as 'cars'!
Tuesday, February 16, 2010
Pebble Creek - Feb. 13, 2010
WARNING: You will never get these ELEVEN minutes of your life back. Also, you might not be as entertained by it if you are not a Goodworth, Bray, Haderlie, or Richards...........
Wednesday, February 03, 2010
Messy Munchkins (and me)
When my boys take my otherwise clean kitchen and make it look like this:
And this: (For the record, this is one evenings worth of homework, toddler play, scripture study, paper airplane making, cookie eating, and puzzle doing. I'm not sure the photos do justice to the total chaos and disarray and STUFF everywhere...... And I didn't even take a picture of what's UNDER the table)!
And I'm walking around, picking things up and grumbling to myself about those kids being better about picking up after themselves, and there are going to be consequences....... I am destined to bend over and pick up something like this:
I think Nate made my hands extra huge so that I could use them like scoops to pick up all their junk. But, somehow, I don't mind so much tonight.
And this: (For the record, this is one evenings worth of homework, toddler play, scripture study, paper airplane making, cookie eating, and puzzle doing. I'm not sure the photos do justice to the total chaos and disarray and STUFF everywhere...... And I didn't even take a picture of what's UNDER the table)!
And I'm walking around, picking things up and grumbling to myself about those kids being better about picking up after themselves, and there are going to be consequences....... I am destined to bend over and pick up something like this:
I think Nate made my hands extra huge so that I could use them like scoops to pick up all their junk. But, somehow, I don't mind so much tonight.
Tuesday, December 22, 2009
My Christmas post.
I'm not feeling the blogging groove right now. Soooooo, just watch this cool video. :-) It makes me happy! I also bought their entire Christmas album and it's a favorite this year (favorite of mine. Warren, not so much)!
Sunday, November 08, 2009
Hey at least I got around to posting about Halloween....
Better a week late than never, right? Right?
Here's 'Super Baby!' (In hindsight I should have dressed her as a monkey with a tutu and called her 'monkey princess' since that's Warren's nickname for her - don't ask. He'll just have to be willing to pay for the therapy.)
Batman was a little strong willed about wearing his treat bucket on his head. I have very few photos of him bucket-less, and, believe it or not, the one here is the only one where he isn't crying (a result of us trying to get him to take the bucket off his head for a picture). Anyhow, he was cute!
And here we have the 'Super Twins!'
Super DREW!
Super Nate!
SUPER TWINS!
These are their extremely EXCELLENT capes. The idea was stolen from my friend Deanne and the capes were sewn by Grandma. I would say that Grandma 'helped' me with the capes, but I'm not sure that by watching her sew them I was particularly helpful....
And here's our Rock Star!
Will started telling us that he wanted a mohawk several months ago. I told him that I would allow him to grow out his hair until Halloween and that we would shave and color it into a mohawk. He was SO EXCITED. Here he is getting his hair shaved.
And here is the finished result. His hair had gotten SO LONG!
And last, but not least, here is our Woopie cushion. Not bad for a kid who was in the ICU two days prior to Halloween!
We love Halloween (well, the boys more than Warren and I - parents just bear the brunt of sugar highs and kids who eat themselves sick). This turned into a great one. We kept it simple and it was fun.
Here's 'Super Baby!' (In hindsight I should have dressed her as a monkey with a tutu and called her 'monkey princess' since that's Warren's nickname for her - don't ask. He'll just have to be willing to pay for the therapy.)
Batman was a little strong willed about wearing his treat bucket on his head. I have very few photos of him bucket-less, and, believe it or not, the one here is the only one where he isn't crying (a result of us trying to get him to take the bucket off his head for a picture). Anyhow, he was cute!
And here we have the 'Super Twins!'
Super DREW!
Super Nate!
SUPER TWINS!
These are their extremely EXCELLENT capes. The idea was stolen from my friend Deanne and the capes were sewn by Grandma. I would say that Grandma 'helped' me with the capes, but I'm not sure that by watching her sew them I was particularly helpful....
And here's our Rock Star!
Will started telling us that he wanted a mohawk several months ago. I told him that I would allow him to grow out his hair until Halloween and that we would shave and color it into a mohawk. He was SO EXCITED. Here he is getting his hair shaved.
And here is the finished result. His hair had gotten SO LONG!
And last, but not least, here is our Woopie cushion. Not bad for a kid who was in the ICU two days prior to Halloween!
We love Halloween (well, the boys more than Warren and I - parents just bear the brunt of sugar highs and kids who eat themselves sick). This turned into a great one. We kept it simple and it was fun.
Thursday, October 29, 2009
A big bad adventure
Well, we are back from San Francisco. To say that this trip was a bit of a fiasco would be an understatement! The plan was to arrive Tuesday morning, meet with UCSF neuro-oncologists Tuesday afternoon, meet with the Radiation oncologist Wednesday morning, meet with the Pediatric endocrinologist Wednesday afternoon, and then fly out Thursday morning. It was going to be a quick trip. All went according to plan for about the first half of the first day.........
We arrived Tueday morning, and spent a few hours wandering around Union Square. After lunch we headed over to UCSF for Matt's appointment with the neuro-oncologist. We waited for over an hour and a half. That's not such a big deal - I never mind waiting, as long as the doctors take a lot of time with us. This appointment went very well. We talked about Matt's diagnoses and treatment history. There were actually two doctors and they told us that the treatments Matt has had so far are exactly what they would have done there. That was very reassuring! We also talked about treatment options, should Matt's tumor begin to grow again. The appointment was coming to a close and the doctor was performing a neurological test on Matthew. She wanted to watch him walk and noticed him limping a bit. She had him take off his socks and shoes and examined his legs and found his left leg to be swollen and red. She suspected another blood clot and so sent us across the street to the ER.
Sigh.
The ER was, well, interesting, I suppose. Let's just say that the ER in a big city made me REALLY miss our little Primary Children's Hospital! For one thing, UCSF is not a children's hospital. It is huge and the ER sees some crazy stuff. There's lots of security and signs everywhere telling the staff how to deal with homeless people, drug addicts, and people with the flu. Matt was taken up pretty quickly for an ultrasound of his leg and, sure enough, a clot was found. Long story short, we arrived at the ER about 6 pm, I left at 10:30 pm to take Audrey to the hotel once we learned that Matt would be admitted, and Matt didn't get a bed in the hospital until 3:00 am. Warren was not amused.........
The protocal at UCSF is that patients who are receiving IV Heparin (which they use to treat blood clots) must be treated in the intensive care unit. Wednesday morning, I called the answering service for the radiation oncologist to pass along the message that we would not be able to make our 8:30 am appointment. We spent all of Wednesday in the ICU, trying to convince everyone we spoke with to let Matt go. :-) Hanging out in the ICU of a hospital in another state, during flu season, with an infant is not exactly a great time. Thankfully, they kept Matt in an isolation room and they did allow Audrey to stay with us (infants who are not patients are not allowed in the ICU at Primary's). During the stay, it was found that for some reason Matt's Lovenox levels were not right. He was on the very low end of the therapeutic range last week but when they ran the labs again, his levels were not in therapeutic range. It was decided to increase his dosage of Lovenox.
Miraculously, the last doctor we were to meet with, Dr.Lustig, happened to be the attending doctor the night we were in the hospital. Even though we had to miss Matt's clinic visit with him, Dr.Lustig was able to come up to the ICU and meet with us right there. Ultimately, even though the trip didn't go as we had envisioned, Matt was able to meet with two of the doctors we had scheduled, and the other was able to call us and we had a telephone conference. It all worked out! I'm so thankful they found the clots. It was quite a good catch, as we hadn't even been visiting them for that purpose. It was a blessing!
Matt was released after only about 48 hours in the ICU. While we were in San Francisco there was a problem with the Bay Bridge and it was closed. Of course, the Bay Bridge is on the way to our airport....... Between a stay in the ICU, excess cab bills back and forth to the hospital from our hotel, and a $200 cab ride to the airport (we had to go clear around to another bridge), this turned into quite an expensive 'little' trip!
The doctors at UCSF presented Matthew's case at 'Tumor board' the day he was released. All of the doctors we had met with were present. It was determined that they agreed with all of Matt's treatments he has had so far. They wouldn't have done, for instance, a different chemotherapy, or radiation. They also agreed that our plan of not doing anything right now, while his tumor is stable, is the right choice. We will continue to watch the tumor closely and if it begins to grow, we will do radiation at that point. Also, all the doctors agreed that a vagotomy (the surgery that will hopefully help stabilize Matt's weight) wouldn't hurt future options for his cancer treatment. I think we are going to go ahead with the surgery. It seems like a pretty minor procedure that could have very major benefits to Matthew. He has gained 12 kg. since his last visit to SF 4 months ago - that is almost 27 lbs. The potential side effects of the surgery seem less problematic than the side effects from obesity. We pray we are making the right choice. We have considered our options for several months and are feeling pretty comfortable with the decision.
We arrived Tueday morning, and spent a few hours wandering around Union Square. After lunch we headed over to UCSF for Matt's appointment with the neuro-oncologist. We waited for over an hour and a half. That's not such a big deal - I never mind waiting, as long as the doctors take a lot of time with us. This appointment went very well. We talked about Matt's diagnoses and treatment history. There were actually two doctors and they told us that the treatments Matt has had so far are exactly what they would have done there. That was very reassuring! We also talked about treatment options, should Matt's tumor begin to grow again. The appointment was coming to a close and the doctor was performing a neurological test on Matthew. She wanted to watch him walk and noticed him limping a bit. She had him take off his socks and shoes and examined his legs and found his left leg to be swollen and red. She suspected another blood clot and so sent us across the street to the ER.
Sigh.
The ER was, well, interesting, I suppose. Let's just say that the ER in a big city made me REALLY miss our little Primary Children's Hospital! For one thing, UCSF is not a children's hospital. It is huge and the ER sees some crazy stuff. There's lots of security and signs everywhere telling the staff how to deal with homeless people, drug addicts, and people with the flu. Matt was taken up pretty quickly for an ultrasound of his leg and, sure enough, a clot was found. Long story short, we arrived at the ER about 6 pm, I left at 10:30 pm to take Audrey to the hotel once we learned that Matt would be admitted, and Matt didn't get a bed in the hospital until 3:00 am. Warren was not amused.........
The protocal at UCSF is that patients who are receiving IV Heparin (which they use to treat blood clots) must be treated in the intensive care unit. Wednesday morning, I called the answering service for the radiation oncologist to pass along the message that we would not be able to make our 8:30 am appointment. We spent all of Wednesday in the ICU, trying to convince everyone we spoke with to let Matt go. :-) Hanging out in the ICU of a hospital in another state, during flu season, with an infant is not exactly a great time. Thankfully, they kept Matt in an isolation room and they did allow Audrey to stay with us (infants who are not patients are not allowed in the ICU at Primary's). During the stay, it was found that for some reason Matt's Lovenox levels were not right. He was on the very low end of the therapeutic range last week but when they ran the labs again, his levels were not in therapeutic range. It was decided to increase his dosage of Lovenox.
Miraculously, the last doctor we were to meet with, Dr.Lustig, happened to be the attending doctor the night we were in the hospital. Even though we had to miss Matt's clinic visit with him, Dr.Lustig was able to come up to the ICU and meet with us right there. Ultimately, even though the trip didn't go as we had envisioned, Matt was able to meet with two of the doctors we had scheduled, and the other was able to call us and we had a telephone conference. It all worked out! I'm so thankful they found the clots. It was quite a good catch, as we hadn't even been visiting them for that purpose. It was a blessing!
Matt was released after only about 48 hours in the ICU. While we were in San Francisco there was a problem with the Bay Bridge and it was closed. Of course, the Bay Bridge is on the way to our airport....... Between a stay in the ICU, excess cab bills back and forth to the hospital from our hotel, and a $200 cab ride to the airport (we had to go clear around to another bridge), this turned into quite an expensive 'little' trip!
The doctors at UCSF presented Matthew's case at 'Tumor board' the day he was released. All of the doctors we had met with were present. It was determined that they agreed with all of Matt's treatments he has had so far. They wouldn't have done, for instance, a different chemotherapy, or radiation. They also agreed that our plan of not doing anything right now, while his tumor is stable, is the right choice. We will continue to watch the tumor closely and if it begins to grow, we will do radiation at that point. Also, all the doctors agreed that a vagotomy (the surgery that will hopefully help stabilize Matt's weight) wouldn't hurt future options for his cancer treatment. I think we are going to go ahead with the surgery. It seems like a pretty minor procedure that could have very major benefits to Matthew. He has gained 12 kg. since his last visit to SF 4 months ago - that is almost 27 lbs. The potential side effects of the surgery seem less problematic than the side effects from obesity. We pray we are making the right choice. We have considered our options for several months and are feeling pretty comfortable with the decision.
Tuesday, October 13, 2009
San Francisco here we come!
Matt has a follow-up in San Francisco with the hypothalamic obesity specialist in two weeks. For awhile now I have been feeling like I wanted to get another opinion on other aspects of Matthew's treatment for his cancer issues. UCSF is a brain tumor consortium hospital and I wondered if they might have some different treatment ideas for Matt's unique set of issues. I have put off making the calls to arrange a visit with other clinics at UCSF and decided to call today even though I was pretty sure it would be too late to make the arrangements. I was so excited when I started to call around and found that everyone was really willing to make things happen for Matt! Now, over the span of two days, Matt will meet with the pediatric neuro-oncology practice and a pediatric neuro-radiologist, along with the Endocrinologist we've met with previously. The oncology doctors will review Matt's chemo protocols (they call this his 'roadmap') that he has already done. They will discuss any treatment options we may have overlooked and will recommend a course of treatment. Then the radiologist will discuss Matt's radiation future. We are most interested in meeting with her because she will be able to talk to us about whether the surgery for the obesity would be a bad idea in light of the future radiation treatment Matt may need. We will discuss which type of radiation would be most beneficial for Matt's particular case and determine whether SLC has the capability to perform that radiation. Some larger centers have different fancy radiation abilities. We'll see what might be best for Matt. Lastly, we will be meeting with Dr.Lustig to discuss the vagotomy surgery for weight management. It will be a whirlwind of a trip but I am so excited to meet with these specialists. I feel so thankful that everything worked out so smoothly. It is meant to be!
Sunday, October 11, 2009
A girl in a house full of boys....
After church, Will was playing with Audrey. Unfortunately, her bow fell off. Fortunately, she had a big brother there to remedy this crisis!
Friday, October 09, 2009
A moment of motherhood perfection
Once in awhile, amid the complaining, fighting and screaming, I have a moment that makes me suspect I'm not totally ruining my children. It seems that all those family home evenings about loving our brothers (and sister) and doing nice things for them, and sticking up for them when someone is being mean might have sunk in. Perhaps Will was actually listening to General Conference when President Monson talked about true Christian service - you know, the 'warm fuzzies talk'?? Anyhow, the other day William did this for Matt.
Sometimes I forget that my other children are participants in this whole cancer experience, as well as Matt. They are acutely aware of Matt's medical routine. Will knew exactly what medications to set out for Matthew, where they were kept, that he ordinarily takes his evening medications with milk, and that he needed a shot. This is one of the reasons we have decided to allow Matthew to take a trip through the 'Make a Wish' foundation. It promises to be a spectacular experience. We are looking forward to a whole week where we will all have a fabulous time, and hopefully, our 8 and 6 and 2 year olds will forget for a moment that they have a big brother with cancer. Of course Matt is the 'wish child' and he had the experience of choosing his wish and will be the spotlight of the week BUT I feel like our other children deserve the trip as well. Matt's siblings deal with many unanswered questions. And they are totally and completely patient as they deal with Matt's repeated hospitalizations and almost weekly day-long doctor visits two hours away. They remain cheerful and are wonderful for Matthew. They keep his life as normal as possible, and I think they understand their important role better than I give them credit for!
Sometimes I forget that my other children are participants in this whole cancer experience, as well as Matt. They are acutely aware of Matt's medical routine. Will knew exactly what medications to set out for Matthew, where they were kept, that he ordinarily takes his evening medications with milk, and that he needed a shot. This is one of the reasons we have decided to allow Matthew to take a trip through the 'Make a Wish' foundation. It promises to be a spectacular experience. We are looking forward to a whole week where we will all have a fabulous time, and hopefully, our 8 and 6 and 2 year olds will forget for a moment that they have a big brother with cancer. Of course Matt is the 'wish child' and he had the experience of choosing his wish and will be the spotlight of the week BUT I feel like our other children deserve the trip as well. Matt's siblings deal with many unanswered questions. And they are totally and completely patient as they deal with Matt's repeated hospitalizations and almost weekly day-long doctor visits two hours away. They remain cheerful and are wonderful for Matthew. They keep his life as normal as possible, and I think they understand their important role better than I give them credit for!
Wednesday, September 30, 2009
Update!
So, today Mr.Matthew had a full day of doctor visits at PCH. We went to see his opthamologist first. Good news there! Nothing has changed in regards to his vision and eye health. We do have to go get the 'visual fields test' (this checks his peripheral vision), but that is just something they do every so often with Matt, not something that means they are worried something is wrong.
Later this afternoon Matt had another ultrasound on his leg, looking at the clots. Good news there, too, as the clots are GONE! Yippeeeee! The ultrasound was followed up by a visit to the Hematology/Oncology clinic. It was sort of strange to be there for the Hematology side of things, rather than the Oncology side of things! His Doctors said they were pleased with the way things looked, ran more blood work to check his clotting levels, and we were on our way. I'm not sure how much longer Matt will need to remain on the Lovenox. One doctor said maybe as few as three more weeks and the other we saw said 3-6 more months of treatment........ :-) Gotta love the consistency!
Matt also met with his Psychiatrist, Dr.Martini (I have to say, I think it's sort of funny that his psychiatrist is named Dr.Martini........) We are trying a new medication with Matt. The out of control feelings seem to be getting worse, including a few episodes of him losing it and crying at school and also overreacting to things at home. His doctor wanted to try Prozac - we'll see how it goes!
Can I just say that I LOVE my Mom! She is just marvelous! Today she took off work to help me, as Warren is out of town and the boys were all out of school. The initial plan was for all of us to sleep over at her house last night, and then today I would take Matt and Audrey to the appointments and she would keep the other boys at her house. Well, that plan changed when Matt's school called yesterday because he threw up (poor kid!) When I saw him, I thought he didn't look right and so gave him a shot of solu-cortef (this is the hormone your body makes, but Matthew's doesn't, when you are ill or when you have a 'flight or fight' response). He went up to bed and slept for 16 hours, waking up this morning feeling fabulous with no signs of an illness. I don't know if he was truly ill with some sort of 24 hour stomach bug, or if his feeling ill was due to his adrenal insufficiency. Anyhow, we put Matt to bed and didn't go over to grandmas for a sleepover. This morning, as I was getting ready to leave, my mom called and said their water-heater had gone out in the night, so she was without hot water today! Probably not a great day to have all the grandkids! So, instead of keeping my boys at her house, she came with me to Salt Lake. It was actually really fun (well, maybe she doesn't think so!!!) She took the boys to the cafeteria for a donut during the first appointment, then we all went out to lunch. During the 2nd half of the day, they all stayed in the car and watched a movie, and then came in the hospital and hung out waiting for Matt and I to finish (some volunteer took pity on my mother and came around with a cart full of books. Each boy was able to choose one. I love PCH!) My mom is just so amazing, and so good to me! I don't know what I would do without her help - oh, and the boys love her, too!
Thanks mom!
Later this afternoon Matt had another ultrasound on his leg, looking at the clots. Good news there, too, as the clots are GONE! Yippeeeee! The ultrasound was followed up by a visit to the Hematology/Oncology clinic. It was sort of strange to be there for the Hematology side of things, rather than the Oncology side of things! His Doctors said they were pleased with the way things looked, ran more blood work to check his clotting levels, and we were on our way. I'm not sure how much longer Matt will need to remain on the Lovenox. One doctor said maybe as few as three more weeks and the other we saw said 3-6 more months of treatment........ :-) Gotta love the consistency!
Matt also met with his Psychiatrist, Dr.Martini (I have to say, I think it's sort of funny that his psychiatrist is named Dr.Martini........) We are trying a new medication with Matt. The out of control feelings seem to be getting worse, including a few episodes of him losing it and crying at school and also overreacting to things at home. His doctor wanted to try Prozac - we'll see how it goes!
Can I just say that I LOVE my Mom! She is just marvelous! Today she took off work to help me, as Warren is out of town and the boys were all out of school. The initial plan was for all of us to sleep over at her house last night, and then today I would take Matt and Audrey to the appointments and she would keep the other boys at her house. Well, that plan changed when Matt's school called yesterday because he threw up (poor kid!) When I saw him, I thought he didn't look right and so gave him a shot of solu-cortef (this is the hormone your body makes, but Matthew's doesn't, when you are ill or when you have a 'flight or fight' response). He went up to bed and slept for 16 hours, waking up this morning feeling fabulous with no signs of an illness. I don't know if he was truly ill with some sort of 24 hour stomach bug, or if his feeling ill was due to his adrenal insufficiency. Anyhow, we put Matt to bed and didn't go over to grandmas for a sleepover. This morning, as I was getting ready to leave, my mom called and said their water-heater had gone out in the night, so she was without hot water today! Probably not a great day to have all the grandkids! So, instead of keeping my boys at her house, she came with me to Salt Lake. It was actually really fun (well, maybe she doesn't think so!!!) She took the boys to the cafeteria for a donut during the first appointment, then we all went out to lunch. During the 2nd half of the day, they all stayed in the car and watched a movie, and then came in the hospital and hung out waiting for Matt and I to finish (some volunteer took pity on my mother and came around with a cart full of books. Each boy was able to choose one. I love PCH!) My mom is just so amazing, and so good to me! I don't know what I would do without her help - oh, and the boys love her, too!
Thanks mom!
Sunday, September 27, 2009
Thursday, September 24, 2009
Recent developments
So, I guess I should update the latest about Matt. He has had such a fantastic summer! His central line was removed which has meant one significant thing - SWIMMING! It has been nice to not have to worry about caring for his line.
Bye Bye Broviac! We loved having you because that meant Matt didn't need to get poked, but are happy he can now shower and swim. It was nice knowing you!
Matt started Middle school this year. His school has FOURTEEN HUNDRED kids! I am not kidding! There is only one middle school in our entire district, so the middle and high schools are the same size. Too big, in my opinion. It is a good school, though, full of dedicated teachers. Matt is enjoying it very much. The first week of school he seemed really wiped out, though. I had heard that the kids came home from middle school exhausted, so I thought it was just the adjustment of a new routine and big school. By Friday of that first week, though, I realized something was up and, sure enough, Strep Throat! Poor kid wasn't wiped out from school, he was sick! We got that treated (the butt shot of Penicillin is AMAZING, by the way - less than 12 hours after it was given he was 100% better).
The next week was a short week because of Labor Day.
Tuesday of the third week we received a call from the school reporting that Matt was in tremendous pain and couldn't walk. Of course Warren and I completely freaked out. The school called back moments later and said the pain was in his leg. He had been complaining of pain in his knee for a few days, but it seemed generally mild and we assumed he had pulled a muscle or something. Well, Warren went to pick him up from school and was startled by how much more pain Matt was in and took Matt directly to the Emergency Room. At this point, we were still assuming it was a pulled muscle, and I was worried about surgery for something like a torn meniscus or other such injury. At the ER, the doctor wanted to rule out the most serious of things that this pain could possibly be, and sent Matt for an ultrasound to confirm that he didn't have blood clots. No one was more surprised than the ER staff when it was discovered that the pain WAS from clots! It is really rare for a child to get blood clots, but we've learned that Matt is exceptional in every way! ;-) That evening ended with the adventure of Matt being transferred to Primary Children's Hospital via ambulance. He was put on IV Heparin and many tests were run to determine whether Matt has some sort of genetic clotting disorder. We are still waiting on the results of 3 of those tests, but the first two came back negative. Matt spent the rest of that week in the hospital and Grandma Julie rescued us and stayed with our other boys so we could both be at the hospital with Matt. Scary stuff! Blood clots are dangerous because a small piece of a clot can break off and go to the lungs, heart, or brain. Thankfully, we seem to have avoided that scenario! Now we just have one other thing to mark 'yes' to when we are filling out new patient forms at a new doctor's office. :-) Matt came home on an anti-coagulant called Lovenox. He has to give himself an injection twice each day. I am so proud of him! He does the shots all by himself. His belly looks awful, though! The blood thinner causes bruising so every place he injects has a baseball sized bruise. He says they don't hurt, but they sure look bad! Here's his belly after only a few shots of the blood thinner.
Matt holding Audrey. She was a tag-along on this hospital visit. Nursing babies have to stay with their mama's, even when their mama's have to stay with their big brother in the hospital!
Cute picture of Audrey in the hotel. This time, Warren and I stayed a few nights with Matt and a few in a nearby hotel. Matt seemed very well and stable and just slept all night. We often stay the whole time, but this time felt okay about leaving him to sleep peacefully while we slept more comfortably than is possible on the hospital couches! :-)
Bye Bye Broviac! We loved having you because that meant Matt didn't need to get poked, but are happy he can now shower and swim. It was nice knowing you!
Matt started Middle school this year. His school has FOURTEEN HUNDRED kids! I am not kidding! There is only one middle school in our entire district, so the middle and high schools are the same size. Too big, in my opinion. It is a good school, though, full of dedicated teachers. Matt is enjoying it very much. The first week of school he seemed really wiped out, though. I had heard that the kids came home from middle school exhausted, so I thought it was just the adjustment of a new routine and big school. By Friday of that first week, though, I realized something was up and, sure enough, Strep Throat! Poor kid wasn't wiped out from school, he was sick! We got that treated (the butt shot of Penicillin is AMAZING, by the way - less than 12 hours after it was given he was 100% better).
The next week was a short week because of Labor Day.
Tuesday of the third week we received a call from the school reporting that Matt was in tremendous pain and couldn't walk. Of course Warren and I completely freaked out. The school called back moments later and said the pain was in his leg. He had been complaining of pain in his knee for a few days, but it seemed generally mild and we assumed he had pulled a muscle or something. Well, Warren went to pick him up from school and was startled by how much more pain Matt was in and took Matt directly to the Emergency Room. At this point, we were still assuming it was a pulled muscle, and I was worried about surgery for something like a torn meniscus or other such injury. At the ER, the doctor wanted to rule out the most serious of things that this pain could possibly be, and sent Matt for an ultrasound to confirm that he didn't have blood clots. No one was more surprised than the ER staff when it was discovered that the pain WAS from clots! It is really rare for a child to get blood clots, but we've learned that Matt is exceptional in every way! ;-) That evening ended with the adventure of Matt being transferred to Primary Children's Hospital via ambulance. He was put on IV Heparin and many tests were run to determine whether Matt has some sort of genetic clotting disorder. We are still waiting on the results of 3 of those tests, but the first two came back negative. Matt spent the rest of that week in the hospital and Grandma Julie rescued us and stayed with our other boys so we could both be at the hospital with Matt. Scary stuff! Blood clots are dangerous because a small piece of a clot can break off and go to the lungs, heart, or brain. Thankfully, we seem to have avoided that scenario! Now we just have one other thing to mark 'yes' to when we are filling out new patient forms at a new doctor's office. :-) Matt came home on an anti-coagulant called Lovenox. He has to give himself an injection twice each day. I am so proud of him! He does the shots all by himself. His belly looks awful, though! The blood thinner causes bruising so every place he injects has a baseball sized bruise. He says they don't hurt, but they sure look bad! Here's his belly after only a few shots of the blood thinner.
Matt holding Audrey. She was a tag-along on this hospital visit. Nursing babies have to stay with their mama's, even when their mama's have to stay with their big brother in the hospital!
Cute picture of Audrey in the hotel. This time, Warren and I stayed a few nights with Matt and a few in a nearby hotel. Matt seemed very well and stable and just slept all night. We often stay the whole time, but this time felt okay about leaving him to sleep peacefully while we slept more comfortably than is possible on the hospital couches! :-)
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