It seems we have settled into a bit of a routine. Mornings are the most intense part of the day. We have our food marathon from 6 am until 9 or 10 am. Then Matthew typically goes into food coma mode, and takes a short nap - maybe an hour or so. I usually nap with him, because 6 am is really early for me, and I haven't adjusted to it. Plus, I'm usually exhausted from preparing him so much food! My nap usually lasts longer than his, and I'm thankful that my other kids are not in school right now, so they're able to help.
Then, the rest of the day, Matthew mostly snacks. It's just a lot of snacks. If it was up to him, he'd lay down and watch Spongebob all day, but I try and get him to expand his horizons a little. I encourage him to choose other things to watch (I know major expanding, right?) and I try and get him to do little crafts with me. I have to sit near him, and just start doing a craft, and talking to him about it. Sometimes, he'll join in and help me, and sometimes he won't. When he does, it gets a big smile on his face, though. I usually sit down a couple of times a day and just start reading him a book. Sometimes he asks me to stop, and sometimes, he gains interest and pays attention. I can never get him to choose a book ahead of time, though. Usually, I also sit near him, and just start coloring in a coloring book, and of course talking to him about it. Sometimes, he'll join in, or just tell me what things to color, and what color to use.
The most exciting event of his day is usually the popcorn maker. We have a movie-theater style popcorn maker - of course, it's miniature, but it still makes a good bucket of popcorn. He wants popcorn every day, and he likes to participate in making it. He likes to put the butter in, and the popcorn kernels. When it's getting ready to pop, we sing "Popcorn Popping on the Apricot Tree." He always gets really into it, and smiles a lot. Then he gets excited when the popcorn starts popping. Then, he takes his popcorn and goes back to the couch to lay down.
I talked to the doctor about how lethargic he is, and the doctor said that's normal right now. He is anemic, but not enough for a blood transfusion.
Most days, Matthew doesn't take any more of a nap than the early, short one after breakfast. Sometimes he'll take another one in the afternoon, but usually not. When he's ready for a change in scenery, he moves to another TV. Maybe he'll go to the office, and maybe he'll go to my bedroom. Usually if he goes to my bedroom, it's because he's tired, but doesn't want to sleep quite yet. When he's ready for sleep, he tells me. Then he closes his eyes and sleeps.
He initiates bedtime every night. It seems to be getting a little bit earlier every day. I'm looking forward to the end of induction because I think he'll at least get some energy back, and the hunger from the steroids will stop plaguing him.
The thing that's interesting is that now that we've developed more of a routine, things are less difficult. I think no matter what your lifestyle is, routine is one of the most important things.
People keep telling me that they read this blog, and it breaks their hearts, or they cry. I can see why, but I want you all to know that there have been some amazing and beautiful things that have happened, too.
The Lord has promised He won't give us more trials than we can handle, and when our load gets too heavy, He'll carry it for us. I bear witness to that. I have seen the Atonement work for me in the past when I've realized that my sins from the past had been forgiven. It was beautiful. Now, I'm learning something new about the Atonement. In Gethsemane, Christ suffered all of our pain. Not just the pain from our sins, but all of it. He understands what my son is going through better than I do. He also understands what I'm going through. When this has become too heavy for me, He has lifted my burden. All I have had to do is invite Him in. In the hospital, when it became too much for Matthew to bear, Justin gave him a blessing and the Lord lifted his burden, too. He slept for the rest of the hospital stay. Sometimes, we're pushed right to the edge of what we can bear, and those times make us stronger, but it's important to remember that we're never alone. He is right there, watching, and waiting for us to need him like a parent teaching their child to ride a bike for the first time. We know they may fall and scrape their knees, and we try to prevent that from happening, but if it does, they'll learn something from it and hopefully get back on the bike.
Maybe this cancer is the Lord's way of taking off our training wheels. If Matthew is being made that strong at 3, think of how strong he'll be when he's my age!
Sunday, July 31, 2011
Saturday, July 30, 2011
Child Life
Something I promised to return to was Child Life. It's a program at the hospital that I think makes Primary Children's unique - at least compared to my other hospital experiences.
The Child Life specialists are sort of like counselors for children that are too young to talk to a counselor. But it's more than that. They help kids of all ages, and the families. I wish I could accurately describe it. They offer play therapy, where they teach the kids about what's happening to them through play, or help them deal with a particular struggle they're facing through play, or just convince the kids to play.
Karen was the Child Life specialist the week we were in the ICS. She was filling in, and I don't know where she usually works, but I was so grateful she was there! She became Matthew's best friend. She would come and see us every day, and she was the only person he would sit up and play with. At first, it took some coaxing, but towards the end of the week, he would sit up as soon as he saw her, and his face would light up. His reaction to everyone else was totally different. For anyone else employed by the hospital, he would scowl, and sometimes yell, whine, or cry. For family members, he might squeak an answer if spoken to, but half the time, he would still scowl. For Justin and I, he would squeak an answer, and sometimes cuddle, but he didn't really want to play. He also tried often to comfort us, which is so sad, because he was going through a lot. But when Karen would come in, he would play. It was amazing.
The first day, all she did was blow bubbles with him. He was so happy that he was allowed to blow bubbles inside that he eventually sat up and played with her. The next day when she came back, she brought a few toys. She let him bonk her on the head with them, and then they threw stuff on the floor. It was pretty aggressive play, and he was the one leading. It worried me a little. She explained to me the next day that it's actually a really healthy way for him to deal with his strong emotions. She said the toys where you hammer pegs into wood, or bop the animals, or things along those lines can be very therapeutic for a child going through something so difficult.
We talked with her when the anesthesia experience was so awful the first time he went under, and she coached us on how to talk to the anesthesiologist the next day, which made it so much easier. She also went downstairs with us, and played with Matthew all the way there, making him so much more comfortable. I always felt like we were her most important assignment. But somehow, I know she made everyone else feel that way, too.
Another thing she did that was really cool was the "hospital buddy." It's a very plain doll made out of fabric, with no face or anything. And she has markers, so the kids can draw a face on it. She also has hospital gowns that fit the doll, and the kids get to choose the pattern. The first day she brought it in, she helped Matthew color a face on it, and food going down his throat into his tummy, and they talked about the food having a party in his tummy. They drew all over the doll, including an eye patch, which he put there when he decided the doll's name is Pirate. It's the first time anyone's ever gotten him to name an animal or toy of any kind. He's always so matter-of-fact, and I was impressed that she got him to do it. Pirate is now one of his favorite toys.
The second day with Pirate, she brought in bandaids, and Matthew tended to Pirate's owies. He got like 10 bandaids. Then they put a bandage on Pirate's chest where Matthew's port had just been placed. Then, they put an IV in Pirate, gave him medicine, and took his vital signs. Pirate's job was to hold still, and my job was to hold Pirate's hand, and Matthew's job was to give Pirate his medicine.
It helped Matthew to understand and cooperate a lot better when the medical staff needed to check him out. Often, he would hold Pirate while they would take his vitals. He learned to ask the nurses to let him listen to their hearts with the stethoscope. He would listen to their hearts and breathing, and then they would listen to his, and he got through it a lot better because he wasn't so scared.
Each unit in the hospital has their own Child Life specialist. The one in the Rapid Treatment Unit (RTU) helps the kids choose a smell for their oxygen mask. She shows them pictures of the operating room. When we had left the hospital, and been home for a few days, then came back for chemo, he had to go to the RTU for a spinal tap. He was scared, because he didn't understand that we didn't have to stay. He wanted to go home. She came in and played with him with a Mister Potato Head, and he felt better.
When we went to the Oncology Clinic (also in the hospital, but a separate unit), the Child Life specialist there heard him crying, and materialized out of nowhere. She is really great with him. She shows him a book or a toy, and talks him through the scary times until he feels better. He has been to the clinic twice now, and both times, as soon as she heard crying, she was right there to help. She played trains just for him to watch while they accessed his port (which is the only needle stick he has to have at his appointments). She read to him, and played trucks for him to watch, and even held the iPhone so I could hold his hand and he could keep watching Spongebob while they removed the needle at the end. She seems to know by instinct how close Matthew will accept her being. Sometimes, she can be close, but sometimes, he needs to watch her play from across the room. She has spent time at each visit trying to understand his likes and dislikes so that she'll have the very most appropriate toys and books ready for him when he comes next time. She's very good at what she does.
I think I've said this before, but I don't think I could say it enough: It amazes me how the people who work in this group (not just Child Life, but all the oncology people - nurses, doctors, the IV team, you name it.) can do what they do, day in and day out. They see so many suffering children. So many suffering families. They find ways to help that you would never expect. They make it as smooth and seamless as possible. They take care of their patients' mental needs right along with their physical needs. They make it so that cancer isn't nearly as scary as it could be. I don't know how they can motivate themselves to keep doing it. They must be drained at the end of the day. They work in such a stressful environment. I have such respect for them, and I thank heavens that they can find it in their hearts to take care of us.
The Child Life specialists are sort of like counselors for children that are too young to talk to a counselor. But it's more than that. They help kids of all ages, and the families. I wish I could accurately describe it. They offer play therapy, where they teach the kids about what's happening to them through play, or help them deal with a particular struggle they're facing through play, or just convince the kids to play.
Karen was the Child Life specialist the week we were in the ICS. She was filling in, and I don't know where she usually works, but I was so grateful she was there! She became Matthew's best friend. She would come and see us every day, and she was the only person he would sit up and play with. At first, it took some coaxing, but towards the end of the week, he would sit up as soon as he saw her, and his face would light up. His reaction to everyone else was totally different. For anyone else employed by the hospital, he would scowl, and sometimes yell, whine, or cry. For family members, he might squeak an answer if spoken to, but half the time, he would still scowl. For Justin and I, he would squeak an answer, and sometimes cuddle, but he didn't really want to play. He also tried often to comfort us, which is so sad, because he was going through a lot. But when Karen would come in, he would play. It was amazing.
The first day, all she did was blow bubbles with him. He was so happy that he was allowed to blow bubbles inside that he eventually sat up and played with her. The next day when she came back, she brought a few toys. She let him bonk her on the head with them, and then they threw stuff on the floor. It was pretty aggressive play, and he was the one leading. It worried me a little. She explained to me the next day that it's actually a really healthy way for him to deal with his strong emotions. She said the toys where you hammer pegs into wood, or bop the animals, or things along those lines can be very therapeutic for a child going through something so difficult.
We talked with her when the anesthesia experience was so awful the first time he went under, and she coached us on how to talk to the anesthesiologist the next day, which made it so much easier. She also went downstairs with us, and played with Matthew all the way there, making him so much more comfortable. I always felt like we were her most important assignment. But somehow, I know she made everyone else feel that way, too.
Another thing she did that was really cool was the "hospital buddy." It's a very plain doll made out of fabric, with no face or anything. And she has markers, so the kids can draw a face on it. She also has hospital gowns that fit the doll, and the kids get to choose the pattern. The first day she brought it in, she helped Matthew color a face on it, and food going down his throat into his tummy, and they talked about the food having a party in his tummy. They drew all over the doll, including an eye patch, which he put there when he decided the doll's name is Pirate. It's the first time anyone's ever gotten him to name an animal or toy of any kind. He's always so matter-of-fact, and I was impressed that she got him to do it. Pirate is now one of his favorite toys.
The second day with Pirate, she brought in bandaids, and Matthew tended to Pirate's owies. He got like 10 bandaids. Then they put a bandage on Pirate's chest where Matthew's port had just been placed. Then, they put an IV in Pirate, gave him medicine, and took his vital signs. Pirate's job was to hold still, and my job was to hold Pirate's hand, and Matthew's job was to give Pirate his medicine.
It helped Matthew to understand and cooperate a lot better when the medical staff needed to check him out. Often, he would hold Pirate while they would take his vitals. He learned to ask the nurses to let him listen to their hearts with the stethoscope. He would listen to their hearts and breathing, and then they would listen to his, and he got through it a lot better because he wasn't so scared.
Each unit in the hospital has their own Child Life specialist. The one in the Rapid Treatment Unit (RTU) helps the kids choose a smell for their oxygen mask. She shows them pictures of the operating room. When we had left the hospital, and been home for a few days, then came back for chemo, he had to go to the RTU for a spinal tap. He was scared, because he didn't understand that we didn't have to stay. He wanted to go home. She came in and played with him with a Mister Potato Head, and he felt better.
When we went to the Oncology Clinic (also in the hospital, but a separate unit), the Child Life specialist there heard him crying, and materialized out of nowhere. She is really great with him. She shows him a book or a toy, and talks him through the scary times until he feels better. He has been to the clinic twice now, and both times, as soon as she heard crying, she was right there to help. She played trains just for him to watch while they accessed his port (which is the only needle stick he has to have at his appointments). She read to him, and played trucks for him to watch, and even held the iPhone so I could hold his hand and he could keep watching Spongebob while they removed the needle at the end. She seems to know by instinct how close Matthew will accept her being. Sometimes, she can be close, but sometimes, he needs to watch her play from across the room. She has spent time at each visit trying to understand his likes and dislikes so that she'll have the very most appropriate toys and books ready for him when he comes next time. She's very good at what she does.
I think I've said this before, but I don't think I could say it enough: It amazes me how the people who work in this group (not just Child Life, but all the oncology people - nurses, doctors, the IV team, you name it.) can do what they do, day in and day out. They see so many suffering children. So many suffering families. They find ways to help that you would never expect. They make it as smooth and seamless as possible. They take care of their patients' mental needs right along with their physical needs. They make it so that cancer isn't nearly as scary as it could be. I don't know how they can motivate themselves to keep doing it. They must be drained at the end of the day. They work in such a stressful environment. I have such respect for them, and I thank heavens that they can find it in their hearts to take care of us.
Friday, July 29, 2011
Bandaid Goo
You know that goo that bandaids leave behind when you take them off? The sticky gray line that you can scrub over and over, and it seems to take days for it to wash off? I swear I'll never get Matthew all the way clean again because of all the bandaid goo.
He still has steri-strips from his surgery 15 days ago (wow has it already been that long?) and they look gross, but at our appointment yesterday the nurse said she'd ask the doctor about them, and the doctor didn't say anything about it, and I forgot. So, I'm not sure if I can take them off or not. They don't look very steri anymore, though.
Then he's got those gooey gray lines in all these weird places around his body. On his back where they did the Lumbar Puncture. Every time I get rid of that one, they do another Lumbar Puncture, creating a new gooey gray line. He has a few on his chest around his port, and one on each wrist (although I think they may be officially gone now).
But I keep finding them. Poor Matthew is sick of me scrubbing him. Yesterday's bath was traumatic for him. He cried the whole time. I guess I just need to be patient and wait for the gooey lines to disappear over time.
On a different note, lots of people asked me how Chemo went yesterday. It really wasn't too bad. He only had to have Vincristine, which takes 2 minutes, so we didn't have to go out to the armchairs where they usually administer Chemo. We just stayed in the exam room. We met a new doctor, who is very young, but super smart and nice. He can't possibly even be 30, which is wild, since oncology is quite an intense specialty. Maybe he was one of those genius kids who graduated high school at like 14, and went straight to college.
Matthew continues to gain weight. He gained 4 lbs last week, which is more than 10% of his body weight. He looks very pudgy. It's kinda cute, but sad at the same time. The extra weight, combined with the muscle weakness is making it hard for him to go up the stairs without help. The doctor yesterday said he had a patient once who had to be moved around in a stroller for the last week of steroids. But he says it isn't long term at all. This is the longest stretch of steroids we'll have to do, and the side effects will mostly be gone within a couple of weeks of getting off of them.
Good thing, because I can only handle so many more marathon breakfasts! Today's menu was 2 eggs and 4 pieces of buttered toast, a bowl of popcorn, half a bowl of cereal, and he's asking me to come and make him something else now -- probably pizza. It's currently 9:15 am.
He still has steri-strips from his surgery 15 days ago (wow has it already been that long?) and they look gross, but at our appointment yesterday the nurse said she'd ask the doctor about them, and the doctor didn't say anything about it, and I forgot. So, I'm not sure if I can take them off or not. They don't look very steri anymore, though.
Then he's got those gooey gray lines in all these weird places around his body. On his back where they did the Lumbar Puncture. Every time I get rid of that one, they do another Lumbar Puncture, creating a new gooey gray line. He has a few on his chest around his port, and one on each wrist (although I think they may be officially gone now).
But I keep finding them. Poor Matthew is sick of me scrubbing him. Yesterday's bath was traumatic for him. He cried the whole time. I guess I just need to be patient and wait for the gooey lines to disappear over time.
On a different note, lots of people asked me how Chemo went yesterday. It really wasn't too bad. He only had to have Vincristine, which takes 2 minutes, so we didn't have to go out to the armchairs where they usually administer Chemo. We just stayed in the exam room. We met a new doctor, who is very young, but super smart and nice. He can't possibly even be 30, which is wild, since oncology is quite an intense specialty. Maybe he was one of those genius kids who graduated high school at like 14, and went straight to college.
Matthew continues to gain weight. He gained 4 lbs last week, which is more than 10% of his body weight. He looks very pudgy. It's kinda cute, but sad at the same time. The extra weight, combined with the muscle weakness is making it hard for him to go up the stairs without help. The doctor yesterday said he had a patient once who had to be moved around in a stroller for the last week of steroids. But he says it isn't long term at all. This is the longest stretch of steroids we'll have to do, and the side effects will mostly be gone within a couple of weeks of getting off of them.
Good thing, because I can only handle so many more marathon breakfasts! Today's menu was 2 eggs and 4 pieces of buttered toast, a bowl of popcorn, half a bowl of cereal, and he's asking me to come and make him something else now -- probably pizza. It's currently 9:15 am.
Thursday, July 28, 2011
Breakfast
Breakfast is the most important meal of the day. Especially if you're 3 years old and taking a strong dose of steroids.
Today's breakfast has been 4 chicken nuggets, a piece and a half of french toast, a hot dog - cut up into small pieces, a piece of bread and now he is asking for Ramen noodles. Holy cow! It's only 7:15 am!
He wakes up at 6:00 am on the dot, hungry. He manages to sleep through the night, but by 6 if I suggest that he lays with me for a minute, it's like an act of war. He wants breakfast!
Today's a chemo day, so I don't know if I'll find the time for a regular blog entry. Please keep us in your thoughts and prayers. Chemo days can be rough.
Today's breakfast has been 4 chicken nuggets, a piece and a half of french toast, a hot dog - cut up into small pieces, a piece of bread and now he is asking for Ramen noodles. Holy cow! It's only 7:15 am!
He wakes up at 6:00 am on the dot, hungry. He manages to sleep through the night, but by 6 if I suggest that he lays with me for a minute, it's like an act of war. He wants breakfast!
Today's a chemo day, so I don't know if I'll find the time for a regular blog entry. Please keep us in your thoughts and prayers. Chemo days can be rough.
Wednesday, July 27, 2011
Changes
It's amazing how fast cancer can change a child.
Matthew's type of cancer is Acute Lymphoblastic Leukemia. The word Acute refers to how quickly the cancer takes over. It's a fast moving cancer.
Today, I'm reflecting on the rapid changes my poor boy has gone through in the last few months. I have gathered some pictures that really show it all.
If you go back to my first blog entry, you'll find the story of the first month. It all started with the bumps on his cheek and neck.
The ones on the bottom show up more, but up at the top, if you look closely, you'll see the bigger one, by his ear. This was June 12th, at about 1pm.
Later that day, it had grown considerably larger. Also, in front of his ear on his cheek, you can see another bump. That one was much more difficult to get a good image of, for some reason. Believe it or not, it was bigger than the one on his neck. This was at about midnight, the morning of June 13th. (basically the same day.)
By the time we went to the emergency room, he was in a lot of pain. The one on his face started looking bruised. This was at about 2am, still on June 13th.
This is the same day - at the same time as the first picture, when the bumps were still relatively small. See how happy he still is? How pink his skin still looks? How chubby his cheeks are?
This day was a turning point. Before this, I had noticed that Matthew was catching everything he was exposed to way too easily, but I still considered him a completely healthy kid. I thought he was getting sick so often because he went to daycare, and kids catch more stuff at daycare.
This is a picture of him sleeping a couple of days before we went to the Primary Children's emergency room.
Following are a few pictures of Matthew during the first few days after we came home. You can see the blood transfusion did him some real good.
He stacked those cups up higher than his head. See how slim his face is here? How skinny his arms are? You can start to see his belly looking chubby.
The first few days he was home, he kept saying he wanted a Spongbob birthday cake, so Grandma Toni made him one. His whole face lit up. The other kids were gone, so Justin, Toni, and I sang him Happy Birthday. It wasn't really his birthday, but no one cared!
See how pink his cheeks are? See how they're starting to get a little bit chubby again?
Now, here's a picture of him from this morning. He was mad that I made him put on some shorts and refused to smile for the picture. He thinks everything's better without pants.
We've had to go up a T-Shirt size, because his belly is so big from the steroids and constant eating. See how chubby his cheeks are? Also from the steroids. He's retaining a lot of water, and the nurse told me I should avoid giving him foods with sodium, but that's the only thing in the whole wide world he wants. He wants pizza and bread sticks (that's the biggest craving - especially bread sticks with the huge pieces of salt on them), and he wants hot dogs, and chicken nuggets, and chips. I can, however, talk him into eating Cheerios in milk. Oh, and he drinks a TON of milk! He's going through a gallon every 2-3 days.
The steroids also make him very grouchy. That's why I finally gave up on getting a smile for that picture - it was never going to happy unless I let him take off the shorts first. And I didn't particularly want to post a picture of him in his undies online.
I can't wait for the steroids to end! Today is day 14, and he has to take them until day 28.
I do hear from other moms, though, that later I'll be really happy he put on some extra weight now. I guess that means later we'll be going back to trying to convince him to eat again.
What a roller-coaster!
He still has his hair, though!
Matthew's type of cancer is Acute Lymphoblastic Leukemia. The word Acute refers to how quickly the cancer takes over. It's a fast moving cancer.
Today, I'm reflecting on the rapid changes my poor boy has gone through in the last few months. I have gathered some pictures that really show it all.
If you go back to my first blog entry, you'll find the story of the first month. It all started with the bumps on his cheek and neck.
The ones on the bottom show up more, but up at the top, if you look closely, you'll see the bigger one, by his ear. This was June 12th, at about 1pm.
Later that day, it had grown considerably larger. Also, in front of his ear on his cheek, you can see another bump. That one was much more difficult to get a good image of, for some reason. Believe it or not, it was bigger than the one on his neck. This was at about midnight, the morning of June 13th. (basically the same day.)
By the time we went to the emergency room, he was in a lot of pain. The one on his face started looking bruised. This was at about 2am, still on June 13th.
This is the same day - at the same time as the first picture, when the bumps were still relatively small. See how happy he still is? How pink his skin still looks? How chubby his cheeks are?
This day was a turning point. Before this, I had noticed that Matthew was catching everything he was exposed to way too easily, but I still considered him a completely healthy kid. I thought he was getting sick so often because he went to daycare, and kids catch more stuff at daycare.
This is a picture of him sleeping a couple of days before we went to the Primary Children's emergency room.
See how pale he is? How thin his cheeks and lips look? His skin looks grayish to me. By this time, I was beginning to feel desperate for someone to tell me what was wrong with my child.
Following are a few pictures of Matthew during the first few days after we came home. You can see the blood transfusion did him some real good.
He stacked those cups up higher than his head. See how slim his face is here? How skinny his arms are? You can start to see his belly looking chubby.
The first few days he was home, he kept saying he wanted a Spongbob birthday cake, so Grandma Toni made him one. His whole face lit up. The other kids were gone, so Justin, Toni, and I sang him Happy Birthday. It wasn't really his birthday, but no one cared!See how pink his cheeks are? See how they're starting to get a little bit chubby again?
Now, here's a picture of him from this morning. He was mad that I made him put on some shorts and refused to smile for the picture. He thinks everything's better without pants.
We've had to go up a T-Shirt size, because his belly is so big from the steroids and constant eating. See how chubby his cheeks are? Also from the steroids. He's retaining a lot of water, and the nurse told me I should avoid giving him foods with sodium, but that's the only thing in the whole wide world he wants. He wants pizza and bread sticks (that's the biggest craving - especially bread sticks with the huge pieces of salt on them), and he wants hot dogs, and chicken nuggets, and chips. I can, however, talk him into eating Cheerios in milk. Oh, and he drinks a TON of milk! He's going through a gallon every 2-3 days.The steroids also make him very grouchy. That's why I finally gave up on getting a smile for that picture - it was never going to happy unless I let him take off the shorts first. And I didn't particularly want to post a picture of him in his undies online.
I can't wait for the steroids to end! Today is day 14, and he has to take them until day 28.
I do hear from other moms, though, that later I'll be really happy he put on some extra weight now. I guess that means later we'll be going back to trying to convince him to eat again.
What a roller-coaster!
He still has his hair, though!
Tuesday, July 26, 2011
Support
I don't even know where to begin on this topic. We have so much support, and it comes from every single direction we look.
When we got Matthew's diagnosis, we spent a lot of time on the phone. I felt like we were spending more time talking to people about Matthew than we were spending with Matthew. So, we started looking at other ways to get the word out. You can't possibly call every person that would want to know. And everyone wants details, which you get really good at reciting. Finally, we decided that we better put something on Facebook. Together, we devised a basic message, and put something similar on each of our walls. Then, the support exploded. Friends started prayer chains, and people who don't pray were still thinking of us, and "sending good thoughts out to the universe" for us. It's amazing how people of such diverse belief systems and backgrounds, in so many places all around the world can come together for one child. People we didn't even know were rooting for us.
We had constant visitors at the hospital (which was a really super good thing, because whenever people weren't there, I would start to lose it). My husband's bosses came, and people from the daycare, and family like crazy. Everyone brought presents and food.
While we were at the hospital, people were feeding the rest of our kids, and dropping in to tell them hi so they didn't feel alone. People took them out to lunch, and to movies to keep them occupied. Family came and scrubbed our house from top to bottom, making sure all the surfaces were sanitized so that it would be safe for Matthew to come home. They did all of our laundry, and I was WAY behind on it! They took it home with them to work on it.
Word spread fast among our ward family. People were praying for him constantly - they still are. I have never felt the power of prayer like I did in the hospital, and it's something that will stay with me for the rest of my life. My ward fasted for us. We had an old friend drop in on us, and he is not a religious person at all, but when we explained about the sacrifice of fasting, and how it makes you stronger in spirit, he said he'd go the rest of the day without food too, for Matthew.
I met another mom in the laundry room at the hospital, and she was amazed that I wasn't a huge mess. Haha! I was just in shock, I think, because I really lost it later, after we went home. This mom was a member of a support group on Facebook. There are 100 members right now. It's been incredibly important to help me get through this, because I have 99 other moms who are going through, or have been through the same thing as us. They are a wealth of knowledge and have these amazing, huge hearts.
We joined Hope Kids, which is an organization that does special family outings for really cool events to give the kids something to look forward to - so they'll have hope and fight harder. There are a lot of other organizations out there with similar purposes, and I'm in the process of finding as many as possible to sign up for them. I can see that it will give my whole family something to keep us strong together.
What really amazes me is that we asked for almost none of these things. People just creatively found ways to help us. What's more, there's no possible way we would be getting through this without so much support. We would be in a living hell, but instead, we're inspired and strengthened, and we're getting through it one day at a time.
Thank you. Everyone. Thank you for all the creative ways you have found to help us. Thank you for the thoughts and prayers. Thank you for the support.
Thank you for loving my little boy!
When we got Matthew's diagnosis, we spent a lot of time on the phone. I felt like we were spending more time talking to people about Matthew than we were spending with Matthew. So, we started looking at other ways to get the word out. You can't possibly call every person that would want to know. And everyone wants details, which you get really good at reciting. Finally, we decided that we better put something on Facebook. Together, we devised a basic message, and put something similar on each of our walls. Then, the support exploded. Friends started prayer chains, and people who don't pray were still thinking of us, and "sending good thoughts out to the universe" for us. It's amazing how people of such diverse belief systems and backgrounds, in so many places all around the world can come together for one child. People we didn't even know were rooting for us.
We had constant visitors at the hospital (which was a really super good thing, because whenever people weren't there, I would start to lose it). My husband's bosses came, and people from the daycare, and family like crazy. Everyone brought presents and food.
While we were at the hospital, people were feeding the rest of our kids, and dropping in to tell them hi so they didn't feel alone. People took them out to lunch, and to movies to keep them occupied. Family came and scrubbed our house from top to bottom, making sure all the surfaces were sanitized so that it would be safe for Matthew to come home. They did all of our laundry, and I was WAY behind on it! They took it home with them to work on it.
Word spread fast among our ward family. People were praying for him constantly - they still are. I have never felt the power of prayer like I did in the hospital, and it's something that will stay with me for the rest of my life. My ward fasted for us. We had an old friend drop in on us, and he is not a religious person at all, but when we explained about the sacrifice of fasting, and how it makes you stronger in spirit, he said he'd go the rest of the day without food too, for Matthew.
I met another mom in the laundry room at the hospital, and she was amazed that I wasn't a huge mess. Haha! I was just in shock, I think, because I really lost it later, after we went home. This mom was a member of a support group on Facebook. There are 100 members right now. It's been incredibly important to help me get through this, because I have 99 other moms who are going through, or have been through the same thing as us. They are a wealth of knowledge and have these amazing, huge hearts.
We joined Hope Kids, which is an organization that does special family outings for really cool events to give the kids something to look forward to - so they'll have hope and fight harder. There are a lot of other organizations out there with similar purposes, and I'm in the process of finding as many as possible to sign up for them. I can see that it will give my whole family something to keep us strong together.
What really amazes me is that we asked for almost none of these things. People just creatively found ways to help us. What's more, there's no possible way we would be getting through this without so much support. We would be in a living hell, but instead, we're inspired and strengthened, and we're getting through it one day at a time.
Thank you. Everyone. Thank you for all the creative ways you have found to help us. Thank you for the thoughts and prayers. Thank you for the support.
Thank you for loving my little boy!
Monday, July 25, 2011
Steroids
It's pretty crazy when your 3 year old goes from eating next to nothing, to waking up in the night because he's hungry. At first, I thought it was going to be helpful that he was so hungry from the steroids, because that sure helped me to reach the goal of 1500 calories a day, but it has suddenly become a monster - completely out of control.
Yesterday, I felt like short order cook. I made him a lot of eggs. I'm supposed to be giving him low sodium foods, which is difficult because that's what he's craving. He wants hot dogs, but I can talk him into eggs instead. He has absolutely no desire for anything sweet, so even bananas are out of the picture. Bananas are probably his favorite food. All the snacking would be so much easier if I could give him fruit!
I did go buy some string cheese, granola bars, and graham crackers. We'll see if any of that is of interest to him. Cross your fingers for us!
Last night, Matthew woke up twice to eat. The second time was 4:30 am, and he was ready to be up for the day. I had had 3 very interrupted hours of sleep. He finally consented to go back to bed at 5:45 or so, but it took me a while to get back to sleep, and then he was up again at 8:30. It reminds me of having a newborn. You have to sleep when the baby sleeps.
Speaking of... he's asleep now, so I suppose I should go take a nap.
Yesterday, I felt like short order cook. I made him a lot of eggs. I'm supposed to be giving him low sodium foods, which is difficult because that's what he's craving. He wants hot dogs, but I can talk him into eggs instead. He has absolutely no desire for anything sweet, so even bananas are out of the picture. Bananas are probably his favorite food. All the snacking would be so much easier if I could give him fruit!
I did go buy some string cheese, granola bars, and graham crackers. We'll see if any of that is of interest to him. Cross your fingers for us!
Last night, Matthew woke up twice to eat. The second time was 4:30 am, and he was ready to be up for the day. I had had 3 very interrupted hours of sleep. He finally consented to go back to bed at 5:45 or so, but it took me a while to get back to sleep, and then he was up again at 8:30. It reminds me of having a newborn. You have to sleep when the baby sleeps.
Speaking of... he's asleep now, so I suppose I should go take a nap.
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