The end of September means we've been back to school for a few weeks now. Jack (my masto-kid) started kindergarten, half days, and I had been nervous about how he'd do. I worked with the school to put a 504 in place to make things as comfortable as possible for him. They changed to environmentally friendly products for cleaning (which seem to be better for him) and made sure the areas where he will be are cool and fragrance/chemical free. It seems to be working. I have only had to give him "extra" meds (a dose of Atarax) twice.
I did attend the first day with him, which was a parent orientation. I had to get rid of many cleaning wipes that were sent in...mostly clorox bleach wipes. I am trying the green works products for school. Seems to be going ok:) I got to stand up and do a little presentation on masto and why he has spots. I handed out a letter that I wrote for the parents and informational brochures. I think it went well. I found out that another little girl in his class has a mastocytoma!!!! I was actually a little excited! (Is that wrong??)
He has mentioned that several kids have asked why he has spots and if he's sick. I hope the kids aren't scared of him. He seems to be making at least a few friends. He tells me he has three girlfriends! Ha!! I emphasized to the teacher my fears for him, and she seems to reinforce to the kids that they treat each other with respect.
Jack has a medication bag that travels with him in school. This seems to be a bit of a challenge for his teachers. It has been left at school 3 times so far. That means he's been without his epi-pen on the bus 3 times. Makes me a little nervous, but I realize it's a learning curve. They just need to make it a habit to check for his bag. I'm trying not to be a freak about it and make the teachers hate me. I feel like it'd be all over if that happened. They need to work with me, not against me!!! Hopefully they'll get in the swing of things and it will become automatic. I have had 5 years to get my "system" down, so I'm trying to be patient.
I don't want to leave out my other kids. Greyson is my youngest. He is speech delayed. His SLP told me Tuesday she thinks he has an oral motor speech delay or problem. I can't remember exactly, but his mouth doesn't move the way it's supposed to so it's tripping him up when he tries to talk. He's been in speech for over a year now (he's 35 mos old) and has just made huge gains in his language this past summer. He said momma for the first time in June which was huge for me (of course!!). He is putting together two word phrases well enough that his dad and I can understand what he's saying. It is a lot of work, but finally we are seeing the payoff. It is a huge relief that it doesn't look like autism anymore. That's such a scary diagnosis. I mean, we'd deal, right?? What else are you going to do??? He also has multiple food allergies that we deal with daily, and hopefully those are working themselves out too. We've pretty much figured out that he's lactose intolerant, and allergic to eggs and peanuts. Things we can deal with.
My oldest two kids are great. Maddie (the oldest) has some back issues going on. Basically she needs PT to strength her abs....we're hoping it's nothing worse than that.
Ethan is just entering middle school and is having problems getting organized. Four missing assignments that he was hiding from me!!! Ugggghhhh!!! Being grounded from xbox will hopefully turn him around. Otherwise, he's a great kid, and an amazing brother to Jack.
Well, the list of things to do is piling up. No rest for the weary. I hope everyone has a great day!
Kristy
Thursday, September 23, 2010
Wednesday, July 28, 2010
Having a Great Summer
In the last entry, I mentioned there's a supplemental insurance available through the state for kids with medical diagnoses. I applied for it, and we got accepted! We pay monthly based on our income (I live in Michigan, so we live modestly:) My mastokid started on Gastrocrom at the end of June. Five weeks later he's doing great! He has not had a major masto-meltdown in a long time. He still gets "fussy" but he's usually tired or due for one of his other meds. I am also switching him onto Xyzal from Zyrtec. I am hoping the nighttime dosing will last the whole next day. I have been trying to look online to see if it makes a huge difference to give it in the morning. He didn't seem too tired last night after he took it and I think that is why they suggest giving it at night. We'll see how this day goes.
I also got a 504 in place for him for September. The school is switching to all plant based cleaners!! They will triple rinse the carpets after cleaning them and make sure to do it over the weekend so they have time to air out. No one will be able to wear perfumes or fragrances, no air fresheners, he will use his own soap for handwashing. He will only eat food from home!! He will carry his own water bottle for cooling off. They are setting the room temperatures lower for him (we'll have to see about this--my older two went through this same school and it was always burnin hot in their rooms. This may end up being a fight.) He's also carrying a pack with meds--Hydroxyzine, Epi-pens, masto lotion. I am so relieved that it's all in place. There was no fight whatsoever, they were unbelievably accomodating.
Other than all that being in place, the kids are having a great summer. We went to Cedar Point--super fun that day! They are doing a lot of swimming. We do a lot of staying in during the day and we play in the evening when it's cooling off. I'm trying to enjoy each day as it comes.
I hope everyone is having a great summer!!
Kristy
I also got a 504 in place for him for September. The school is switching to all plant based cleaners!! They will triple rinse the carpets after cleaning them and make sure to do it over the weekend so they have time to air out. No one will be able to wear perfumes or fragrances, no air fresheners, he will use his own soap for handwashing. He will only eat food from home!! He will carry his own water bottle for cooling off. They are setting the room temperatures lower for him (we'll have to see about this--my older two went through this same school and it was always burnin hot in their rooms. This may end up being a fight.) He's also carrying a pack with meds--Hydroxyzine, Epi-pens, masto lotion. I am so relieved that it's all in place. There was no fight whatsoever, they were unbelievably accomodating.
Other than all that being in place, the kids are having a great summer. We went to Cedar Point--super fun that day! They are doing a lot of swimming. We do a lot of staying in during the day and we play in the evening when it's cooling off. I'm trying to enjoy each day as it comes.
I hope everyone is having a great summer!!
Kristy
Tuesday, May 18, 2010
New Oppurtunities
We have been having a rough few weeks/months. For some reason (like we can ever figure out ALL the triggers??) he's been back to the reactions with the behavior. Uggh. I think it may have been my daughter and her perfume since it is calming down after she stopped wearing it here (again).
He is starting kindergarten in the fall and I can't stop worrying about the loss of the control of his environment. I have to have a meeting with the school this week to change their cleaners to "environmentally friendly". I am nervous that they're going to give me a hard time or that there won't be any that will work. I know they have to provide an environment that is suitable for his learning, and chemicals will make that impossible. I will make it happen.
I also realized through another wonderful mom with a kid with special needs that I should have applied for supplemental insurance through the state. The gastrocrom is really expensive, and I could get some help in paying for it. I haven't been able to afford it, and I think it would really help his and improve the quality of his life. I am sending in the application this week. Prayers for an approval would be wonderful!
I have a lot on my plate keeping everyone organized, but it's what I signed up for. I still worry I'm not doing enough for the older kids, but I'll do what I can. That's all for now....
Kristy
He is starting kindergarten in the fall and I can't stop worrying about the loss of the control of his environment. I have to have a meeting with the school this week to change their cleaners to "environmentally friendly". I am nervous that they're going to give me a hard time or that there won't be any that will work. I know they have to provide an environment that is suitable for his learning, and chemicals will make that impossible. I will make it happen.
I also realized through another wonderful mom with a kid with special needs that I should have applied for supplemental insurance through the state. The gastrocrom is really expensive, and I could get some help in paying for it. I haven't been able to afford it, and I think it would really help his and improve the quality of his life. I am sending in the application this week. Prayers for an approval would be wonderful!
I have a lot on my plate keeping everyone organized, but it's what I signed up for. I still worry I'm not doing enough for the older kids, but I'll do what I can. That's all for now....
Kristy
Friday, February 5, 2010
February 5
Wow!! Time really flies!! Here we are, almost all the way through the winter and the last time I updated was August.
Jack has been doing fantastic. I am sorely missing Dr Akin, though. I didn't realized how blessed we had been to have him in the same state, a mere 45 minutes from us. Now he's a loooooong ways away, and I am wishing for a nice reassuring visit with him. Well, since Jack is relatively stable, I guess we'll survive with our regular allergist/immunologist. He is fantastic, and is willing to learn, which is more than half the battle!!
We are almost one year in to the dye/preservative free living, and I have come soooo far. We are also chemical free in our house. I am proud of the way we are living, and it feels good to be able to provide my kids a safe house in which to grow up....no cancer causing chemicals here!!! My daughter is even on board and has stopped wearing perfume! His behavior is a world away from where we started...he went to bed tonight like the sweet angel boy he is...not one peep of the fussiness or craziness we used to live with. Looking back, I don't know how we made it through that. Carrying him in to his bedroom while he was thrashing, kicking, clawing, screaming and crying was no way for him to live. Or us, for that matter. I am glad we are living a better life.
The other kids are also seeing the benefit of eating better. Although they complained that we had "nothing good to eat" at first, they have come around and know that the benefits of our healthy eating far outweight their cravings for junk...ahhhh. How rewarding!
My youngest has been diagnosed severely speech delayed. He was at a 3-6 mos receptive/expressive level when we started with speech therapy at 19mos, but has progressed wonderfully and in now just has an expressive delay...I'd say he's at a 12-18 mos level (he's 27 mos). He's coming along. It's another added bonus...dealing with speech therapy. I guess we got one thing under control, so time to move on to the next thing.
The older kids are doing great. Both are honor roll students. I am so proud of them!! My daughter tried out for volleyball, but didn't make it....heartbreaking, but with failure comes determination....or something like that. My son continues to be a super soccer player....love watching that kid play!!!
I was appointed to VP of Research for Mastokids, a position I am proud of. It is up to me to bring research to our organization. It's going to be a fair amount of work, but hopefully I will leave the position in better shape than I'm finding it. I have lots of goals for the year, so I need to get on it!!
I think this is all for my update for now. It's nice to get my thoughts out!!
Kristy
Jack has been doing fantastic. I am sorely missing Dr Akin, though. I didn't realized how blessed we had been to have him in the same state, a mere 45 minutes from us. Now he's a loooooong ways away, and I am wishing for a nice reassuring visit with him. Well, since Jack is relatively stable, I guess we'll survive with our regular allergist/immunologist. He is fantastic, and is willing to learn, which is more than half the battle!!
We are almost one year in to the dye/preservative free living, and I have come soooo far. We are also chemical free in our house. I am proud of the way we are living, and it feels good to be able to provide my kids a safe house in which to grow up....no cancer causing chemicals here!!! My daughter is even on board and has stopped wearing perfume! His behavior is a world away from where we started...he went to bed tonight like the sweet angel boy he is...not one peep of the fussiness or craziness we used to live with. Looking back, I don't know how we made it through that. Carrying him in to his bedroom while he was thrashing, kicking, clawing, screaming and crying was no way for him to live. Or us, for that matter. I am glad we are living a better life.
The other kids are also seeing the benefit of eating better. Although they complained that we had "nothing good to eat" at first, they have come around and know that the benefits of our healthy eating far outweight their cravings for junk...ahhhh. How rewarding!
My youngest has been diagnosed severely speech delayed. He was at a 3-6 mos receptive/expressive level when we started with speech therapy at 19mos, but has progressed wonderfully and in now just has an expressive delay...I'd say he's at a 12-18 mos level (he's 27 mos). He's coming along. It's another added bonus...dealing with speech therapy. I guess we got one thing under control, so time to move on to the next thing.
The older kids are doing great. Both are honor roll students. I am so proud of them!! My daughter tried out for volleyball, but didn't make it....heartbreaking, but with failure comes determination....or something like that. My son continues to be a super soccer player....love watching that kid play!!!
I was appointed to VP of Research for Mastokids, a position I am proud of. It is up to me to bring research to our organization. It's going to be a fair amount of work, but hopefully I will leave the position in better shape than I'm finding it. I have lots of goals for the year, so I need to get on it!!
I think this is all for my update for now. It's nice to get my thoughts out!!
Kristy
Sunday, August 23, 2009
Party News

Well, I am happy to report that our birthday party/fundraiser was a success!!! It was yesterday. I had been praying for nice warm weather. Funny....my prayers were answered, but in a way I wasn't expecting:) Jack doesn't tolerate weather that is too warm...he stays in until around 6 or 7pm most days during the summer, and goes out to play when it cools off. The weather was cool--probably 65 degrees. It was cloudy and threatening to rain. It was perfect for him!! He was outside playing happily all day! If it wasn't for the "terrible" weather, he would have been inside missing his own party!!! It was GREAT!!!!
The Star Wars guys were amazing. Darth Vader rounded up two stormtroopers and they were in full action from 4 to 6pm. They posed for pictures, mingled and even chased the kids around. Darth Vader even swung on our swings!! It was really funny!

We made more than $2,600!!!!!! My family and friends overwhelmed me with generosity!! I am truly blessed!! It was exhausting but rewarding. We had amazing help from family and friends. Everyone had fun and we made good money---I couldn't have asked for more.
So.....just wanted to share:)
Kristy
Wednesday, July 29, 2009
Fundraising!
I decided to have a fundraiser/birthday party for my almost 4 year old with masto. My decision came at a good time...right at the time I found out he has the gene mutation that could mean he'll have masto forever. It seemed the right thing to do. I have to DO something, so I'm going to try to raise some money for Mastokids.
I don't know how I thought I could do it all...four kids and a full time job plus overtime whenever I can get it. Am I crazy??? Yes, I suppose I am. Anyway, we are full out planning the party, and people have been wonderful. We have bouncer donated. We are getting some food donated. Kohl's is sending volunteers, and the 501st Legion is sending Darth Vader and hopefully some stormtroopers. We are really excited about that!!! They are soooo cool. If you've never seen them, it's like Star Wars just walked off the set and into your party. My kids and my husband are so excited.
I guess I've been entertaining the idea of having a fundraiser since last December....but like all things in my life, I only do something when I absolutely have to. I wish I was more of a planner, but I'm just not. I didn't really start planning until the Star Wars guys actually committed to coming. So now I'm in panic mode trying to get it all done. My poor husband...I have him loaded up with projects for outside...since the party is here, all the projects that we've been needing to do for the last, oh, four years, are getting done in the next three weeks!!
As far as Jack is concerned, he's been doing really great. The diet (dye/preservative free) is really working great. I have mangaged to keep from "cheating". He has been relatively happy, but I'm wondering about these popsicles he's been eating the last two days...kind of cranky. They are supposed to be "naturally" colored with tumeric and annato (?sp) but I'm not sure if he should be eating them. Hmmm....I'll have to ask my peeps.
The baby has had a bad day...I let him eat a couple of natural Cheetos. Oy. What in the world was I thinking. I swear...two skin tests say he's not allergic to milk, but his gut says he is. That's enough of that. His skin is all broken out. I feel like such a bad momma sometimes, but when he's pitching a fit because he wants to eat what the other kids are eating, I feel like one or two won't hurt him. Problem is, it does.
The older kids are happy today. I bought my oldest some new things at a store she loves. I feel good about that. So often my attention is on the younger kids, I feel like she is pushed aside. I do try to make an effort to spend time alone with each of them, but it's so hard. There's not enough time in the day. I hope they don't grow up and end up in therapy because I neglected them. My oldest son got to spend his gift card at the resale video game store. That was great. He spent sooooo long sorting through them all....I did my best to keep the younger ones occupied. I didn't want him to have to rush. There's something great about being able to go in a store and buy anything in there!!!! He ended up getting two games which were 50% off, and has a good amount left on the card. He is soooo like me...he loves a bargain and doesn't spend all his money in one shot. That is something I love about him.
Life is so busy...I really hope when I grow old I will remember this time with my children. I hope I don't forget how wonderful they really are. Time goes so fast.
Kristy
I don't know how I thought I could do it all...four kids and a full time job plus overtime whenever I can get it. Am I crazy??? Yes, I suppose I am. Anyway, we are full out planning the party, and people have been wonderful. We have bouncer donated. We are getting some food donated. Kohl's is sending volunteers, and the 501st Legion is sending Darth Vader and hopefully some stormtroopers. We are really excited about that!!! They are soooo cool. If you've never seen them, it's like Star Wars just walked off the set and into your party. My kids and my husband are so excited.
I guess I've been entertaining the idea of having a fundraiser since last December....but like all things in my life, I only do something when I absolutely have to. I wish I was more of a planner, but I'm just not. I didn't really start planning until the Star Wars guys actually committed to coming. So now I'm in panic mode trying to get it all done. My poor husband...I have him loaded up with projects for outside...since the party is here, all the projects that we've been needing to do for the last, oh, four years, are getting done in the next three weeks!!
As far as Jack is concerned, he's been doing really great. The diet (dye/preservative free) is really working great. I have mangaged to keep from "cheating". He has been relatively happy, but I'm wondering about these popsicles he's been eating the last two days...kind of cranky. They are supposed to be "naturally" colored with tumeric and annato (?sp) but I'm not sure if he should be eating them. Hmmm....I'll have to ask my peeps.
The baby has had a bad day...I let him eat a couple of natural Cheetos. Oy. What in the world was I thinking. I swear...two skin tests say he's not allergic to milk, but his gut says he is. That's enough of that. His skin is all broken out. I feel like such a bad momma sometimes, but when he's pitching a fit because he wants to eat what the other kids are eating, I feel like one or two won't hurt him. Problem is, it does.
The older kids are happy today. I bought my oldest some new things at a store she loves. I feel good about that. So often my attention is on the younger kids, I feel like she is pushed aside. I do try to make an effort to spend time alone with each of them, but it's so hard. There's not enough time in the day. I hope they don't grow up and end up in therapy because I neglected them. My oldest son got to spend his gift card at the resale video game store. That was great. He spent sooooo long sorting through them all....I did my best to keep the younger ones occupied. I didn't want him to have to rush. There's something great about being able to go in a store and buy anything in there!!!! He ended up getting two games which were 50% off, and has a good amount left on the card. He is soooo like me...he loves a bargain and doesn't spend all his money in one shot. That is something I love about him.
Life is so busy...I really hope when I grow old I will remember this time with my children. I hope I don't forget how wonderful they really are. Time goes so fast.
Kristy
Wednesday, July 22, 2009
Birthdays are so Nostalgic!!
One of the busiest things about having four kids....is they each have their own birthday. My oldest son turned 10 today...I find myself thinking back...10 years ago at this time I was doing this, 10 years ago at this time I was doing this....10years ago I was getting my epidural...and so on. It makes me think of how much has changed in my life.
I am planning my almost 4 year olds birthday party for next month..Aug 22 is his party date. We are trying to plan a huge fundraiser birthday party for him. I am trying to raise money for mastokids, an organization which is dear to my heart. My 4 year old has masto, and may have systemic masto, although I am hoping for the best that he does not. I again, am amazed at how much my life has changed since giving birth to this wonderful child. He has made all of us see life in a different way. We appreciate more. We eat healthier. We plan more carefully. We are blessed to have him. Although, given the chance, I would choose for him to not have masto, it has shown us how lucky we are compared to some. He is alive, growing, learning and thriving every day.
The busy-ness of life sometimes gets in the way of remembering to appreciate things more fully. I think for me, birthdays make me slow down...reflect...appreciate. I'm glad I have four kids...and this is one more reason why...
Have a great day.
I am planning my almost 4 year olds birthday party for next month..Aug 22 is his party date. We are trying to plan a huge fundraiser birthday party for him. I am trying to raise money for mastokids, an organization which is dear to my heart. My 4 year old has masto, and may have systemic masto, although I am hoping for the best that he does not. I again, am amazed at how much my life has changed since giving birth to this wonderful child. He has made all of us see life in a different way. We appreciate more. We eat healthier. We plan more carefully. We are blessed to have him. Although, given the chance, I would choose for him to not have masto, it has shown us how lucky we are compared to some. He is alive, growing, learning and thriving every day.
The busy-ness of life sometimes gets in the way of remembering to appreciate things more fully. I think for me, birthdays make me slow down...reflect...appreciate. I'm glad I have four kids...and this is one more reason why...
Have a great day.
Tuesday, July 14, 2009
What is going on here??
I am sitting here typing this while my four very healthy children are safe and sound in their beds. I know Jack has masto, but I don't care...there are so many terrible things it could be.
I work in a Pediatric Intensive Care Unit. I see terrible, awful things. It has been an especially bad few weeks. A beautiful 7 year old just lost her battle with cancer on the 10th, a boy my kids go to school with lost his battle today. A five year old lays dying right as I type this from a brain tumor and a 20 yr old lays unresponsive in hospice care...it's only a matter of days. It makes me feel sick to my stomach. I want to scream. How can so many children lose their lives far too early...they have so much living to do. It's just not fair. I know that many, many people...moms, dads, friends, brothers, sisters, etc...have asked the same questions I ask before, and there will never be an answer. I still wonder though.
I think for me, I look for the good to come out. There has to be some good that comes from all these terrible, senseless deaths. Even something as small as me realizing that even though my 3 year old has masto, he will grow, it can be managed, I will appreciate him all the more. Even amidst the crazy that my life has become, it's a great crazy.
I am very spiritual. I believe these children will be "around". They will give subtle signs of their well being, even after physical death. I find this thought to be comforting--to know that these children will continue to be part of their families, even if they only "check in" from time to time. Watch John Edward on "WE" tv if you don't know what I'm saying.
I pray that these families will find some peace eventually. I don't think they'll ever accept the deaths of these children, but they will learn to live with it. They will go on because they have other children and they have to. Life does go on, even if it doesn't seem like it should.
Please join me in praying for all families with children sick with cancer.
Good night.
I work in a Pediatric Intensive Care Unit. I see terrible, awful things. It has been an especially bad few weeks. A beautiful 7 year old just lost her battle with cancer on the 10th, a boy my kids go to school with lost his battle today. A five year old lays dying right as I type this from a brain tumor and a 20 yr old lays unresponsive in hospice care...it's only a matter of days. It makes me feel sick to my stomach. I want to scream. How can so many children lose their lives far too early...they have so much living to do. It's just not fair. I know that many, many people...moms, dads, friends, brothers, sisters, etc...have asked the same questions I ask before, and there will never be an answer. I still wonder though.
I think for me, I look for the good to come out. There has to be some good that comes from all these terrible, senseless deaths. Even something as small as me realizing that even though my 3 year old has masto, he will grow, it can be managed, I will appreciate him all the more. Even amidst the crazy that my life has become, it's a great crazy.
I am very spiritual. I believe these children will be "around". They will give subtle signs of their well being, even after physical death. I find this thought to be comforting--to know that these children will continue to be part of their families, even if they only "check in" from time to time. Watch John Edward on "WE" tv if you don't know what I'm saying.
I pray that these families will find some peace eventually. I don't think they'll ever accept the deaths of these children, but they will learn to live with it. They will go on because they have other children and they have to. Life does go on, even if it doesn't seem like it should.
Please join me in praying for all families with children sick with cancer.
Good night.
Monday, July 6, 2009
Keeping on target is hard...
It seems lately we have been having a hard time keeping the 3 yr old on his diet. There are temptations everywhere. How do we deny him things that the people around him are eating without making him feel bad about being "different"? There was, of course, a nice birthday cake at the last birthday celebration. There were cupcakes that were very tasty, but my husband didn't make the frosting for them. So, Jack wanted the cake with the frosting with the food coloring. Ugh. We let him have it, and he's been a beast for the last day and a half, ending with a full blown "masto meltdown" tonight before bed. Screaming (I hate you!!!!), crying, hitting, throwing things....cake wasn't worth this. It always seems to be something as far as food. The other thing I'm trying to avoid is chemical cleaners...seems to trigger a reaction. Double ugh. So, I'm currently investigating plant based cleaners.
The baby has an allergy appointment this week. He's been having a mysterious rash when playing outside. My allergist (who I see at work) thinks he may be having a "cholinergic" type reaction to the warm weather when he gets hot and sweaty. The Zyrtec works on it, which would support his theory, so we'll see...I hope that his food allergies are becoming better...we've really been able to keep his diet clean. I'm really counting on the fact that he'll probably outgrow them.
My daughter, the oldest, has been really helpful lately. She's great with the older kids, and watches them when I ask her. My fear is that I don't spend enought one-on-one with her. So that is something I'm trying to focus on with her.
My almost 10year old seems to get lost. He needs me so much. He really gets upset when he doesn't see me so I have to remind myself that he needs me just as much as the little boys. He's such a great kid. He plays with the younger ones and truly enjoys it...and lets them in when his friends are over.
I hope when I'm old I won't feel like I wasn't the best mom I could be. I really try hard with my kids, but it never feels like enough. No wonder people stop at one or two!!!
The baby has an allergy appointment this week. He's been having a mysterious rash when playing outside. My allergist (who I see at work) thinks he may be having a "cholinergic" type reaction to the warm weather when he gets hot and sweaty. The Zyrtec works on it, which would support his theory, so we'll see...I hope that his food allergies are becoming better...we've really been able to keep his diet clean. I'm really counting on the fact that he'll probably outgrow them.
My daughter, the oldest, has been really helpful lately. She's great with the older kids, and watches them when I ask her. My fear is that I don't spend enought one-on-one with her. So that is something I'm trying to focus on with her.
My almost 10year old seems to get lost. He needs me so much. He really gets upset when he doesn't see me so I have to remind myself that he needs me just as much as the little boys. He's such a great kid. He plays with the younger ones and truly enjoys it...and lets them in when his friends are over.
I hope when I'm old I won't feel like I wasn't the best mom I could be. I really try hard with my kids, but it never feels like enough. No wonder people stop at one or two!!!
Sunday, April 12, 2009
New Diet
My older two kids have been healthy. My twelve year old had her tonsils out. My 9 year old was tongue tied, had surgery and speech therapy. Otherwise, healthy children. Then came the other two.
So, my three year old has mastocytosis. He was diagnosed in March of 2006--he was 7 mos old. We have had a pretty easy time of it compared to other kids with this rare disease, but have recently become aware that changing our diet to preservative/dye free will further decrease his symptoms. His main symptoms are flushing (he turns red, mostly on his face/ears), and behavior. He becomes wild, hits/cries/claws at us/throws things. It's like a temper tamtrum X 1000. He is on daily meds--Zyrtec and Zantac, but had noticed an increase in his behavioral symptoms in January or so....so instead of adding another medication, we changed our diet.
I found it very intimidating at first. But, Trader Joe's has proven to be a wonderful store to shop at. We noticed a change for the better the very first day. We put him to bed that night and didn't have the screaming, crying and hitting that we had been experiencing for months before. It's been pretty good since then. We can definately tell when he gets something with a preservative. Today for example. He ate chocolate...a lot of chocolate. It's hard to say no when he wants to eat a chocolate bunny. Tonight we had crying. It's not as intense, but still not great. It's not worth him eating something bad to have his behavior worsen. I wonder if he feels physically bad. He never fights me when I tell him something is bad for his body. He doesn't argue with me. He just doesn't eat it. But today, I felt bad so I let him eat. Hmm. Live and Learn.
My 17 mos old had an allergy appointment last week. He was previously diagnosed with an egg allergy. We have always had trouble with his diet. He never tolerated me eating/drinking dairy (cow's milk protein) when I was nursing him...and that was a full 12 months. I gave him an egg yolk at 9mos old, something I did with the other three kids at about that age, and within minutes his eyes were red, itchy, his face got red, his breathing got raspy. I gave him Benadryl immediately and made an allergy appointment. Sure enough, he is severly allergic to eggs. His skin test for cow's milk protein was negative, but whenver he's on it he develops a rash all over his body. It's like a combo eczema and red bumpy rash....so we consider him allergic. We have had him off dairy and eggs but the eczema persisted so I took him to a different allergist this past week. His skin test was positive for peanuts. Bummer. That's not one you outgrow. Soooo, in addition to preservative/dye free we are egg, dairy and peanut free. Geesh. We have become experts in reading labels. The extra bonus was that the allergist heard a heart murmur. I am worried since his pediatrician has never heard it. Is this something that can develop or was it always there?? We are going to the pediatrician tomorrow. I am nervous.
All this makes me wonder what the hell is going on???? How can I get two basically heathy kids, and then 6 years later have two kids who have all these health issues?? I don't think I'm the only one who is wondering what's going on with the food allergies. I sure hope there is some serious research going into this.
Well, I guess that's all for now. There are some things going on in the periphery. My 3 yr old will also need some more lab tests to determine if his disease is systemic, which equals permanent versus one he will outgrow. That should be done in the next month. Our insurance company just approved the test (how does someone sitting in an office get to decide whether or not my son has a medical test???) so that will be soon. That's another whole topic. Thanks for reading.
Kristy
So, my three year old has mastocytosis. He was diagnosed in March of 2006--he was 7 mos old. We have had a pretty easy time of it compared to other kids with this rare disease, but have recently become aware that changing our diet to preservative/dye free will further decrease his symptoms. His main symptoms are flushing (he turns red, mostly on his face/ears), and behavior. He becomes wild, hits/cries/claws at us/throws things. It's like a temper tamtrum X 1000. He is on daily meds--Zyrtec and Zantac, but had noticed an increase in his behavioral symptoms in January or so....so instead of adding another medication, we changed our diet.
I found it very intimidating at first. But, Trader Joe's has proven to be a wonderful store to shop at. We noticed a change for the better the very first day. We put him to bed that night and didn't have the screaming, crying and hitting that we had been experiencing for months before. It's been pretty good since then. We can definately tell when he gets something with a preservative. Today for example. He ate chocolate...a lot of chocolate. It's hard to say no when he wants to eat a chocolate bunny. Tonight we had crying. It's not as intense, but still not great. It's not worth him eating something bad to have his behavior worsen. I wonder if he feels physically bad. He never fights me when I tell him something is bad for his body. He doesn't argue with me. He just doesn't eat it. But today, I felt bad so I let him eat. Hmm. Live and Learn.
My 17 mos old had an allergy appointment last week. He was previously diagnosed with an egg allergy. We have always had trouble with his diet. He never tolerated me eating/drinking dairy (cow's milk protein) when I was nursing him...and that was a full 12 months. I gave him an egg yolk at 9mos old, something I did with the other three kids at about that age, and within minutes his eyes were red, itchy, his face got red, his breathing got raspy. I gave him Benadryl immediately and made an allergy appointment. Sure enough, he is severly allergic to eggs. His skin test for cow's milk protein was negative, but whenver he's on it he develops a rash all over his body. It's like a combo eczema and red bumpy rash....so we consider him allergic. We have had him off dairy and eggs but the eczema persisted so I took him to a different allergist this past week. His skin test was positive for peanuts. Bummer. That's not one you outgrow. Soooo, in addition to preservative/dye free we are egg, dairy and peanut free. Geesh. We have become experts in reading labels. The extra bonus was that the allergist heard a heart murmur. I am worried since his pediatrician has never heard it. Is this something that can develop or was it always there?? We are going to the pediatrician tomorrow. I am nervous.
All this makes me wonder what the hell is going on???? How can I get two basically heathy kids, and then 6 years later have two kids who have all these health issues?? I don't think I'm the only one who is wondering what's going on with the food allergies. I sure hope there is some serious research going into this.
Well, I guess that's all for now. There are some things going on in the periphery. My 3 yr old will also need some more lab tests to determine if his disease is systemic, which equals permanent versus one he will outgrow. That should be done in the next month. Our insurance company just approved the test (how does someone sitting in an office get to decide whether or not my son has a medical test???) so that will be soon. That's another whole topic. Thanks for reading.
Kristy
Monday, September 22, 2008
As September rolls by, I wonder if I'll look back on this time with my children with warm memories. I hope I'll block out all the craziness that accompanies it. There never seems to be enough hours in the day. I'm always doing things to put out fires. Is this what people call the journey?? I think I'm supposed to be enjoying it, not dreading each day as I rise. Perhaps I'm a perfectionist. I feel like a perfectionist wouldn't have dog hair all over her crawling baby because she didn't get to the vacuuming that day. She would have squeezed it in. And she wouldn't have dust on her furniture, she would have gotten up early to wipe it off. So I don't think I'm a perfectionist. I feel beat down. Like some giant invisible oaf has his thumb on me and is squishing me into the earth while laughing and saying "You'll never do it all!!! Hahaha!!" I need help--emotional and physical help. Someone throw me a lifeline. I'm sinking.
Friday, September 5, 2008
Whoa!! We are busy!
Well, school started this week, and you would think it would help having the older kids in school. Absolutely untrue. It truly amazes me how much goes into starting each school year. In addition, J started preschool, and carting kids back and forth never seems to end.
We also started activities this week, which includes gymnastics for the oldest and youngest. The older middle has a football game tomorrow, and religious ed. will start-up soon. No wonder people stop having kids after one or two. Some days I really don't know if I can get everything done. I wake up every day with my mind buzzing with all the things that have to get done. I make my list and as I cross things off, I really feel accomplished, but it just seems that I start the next day with an equally big list. Sometimes I feel like I race through the day trying to get all the tasks complete, but knowing that I'll never be done, there will always be more. I get really frustrated. And then you add on the guilt that I don't really play with the kids as much as I should and I hope that I'm giving each one of them enough of me so they don't grow up warped. It's an overwhelming responsibility. Then you share a funny time with them, and it doesn't seem so bad. Having kids is crazy...
Why is it that working or not, moms always do more (it seems like it to me)? Why can't my husband schedule the dr appt's and activities, sign up to volunteer or pay the bills? I work full time, and yet a lot more still falls on me. Maybe I don't know how to say no. I think that is probably the problem. Just yesterday I found myself going to a meeting (which means I'm on another committee) that I clearly don't have time for. I'm studying for an exam on top of all of this, which will thankfully be on the 20th--hopefully I'll be prepared. I try to squeeze in study time whenever I can--waiting in line, at work when I have a few minutes, or at lunch. I'm hoping its enough. It's a lot of money to waste if I don't pass.
Well, as I sit here and type, there are baby clothes to go through. I need to purge and sitting here is not getting the job done.
We also started activities this week, which includes gymnastics for the oldest and youngest. The older middle has a football game tomorrow, and religious ed. will start-up soon. No wonder people stop having kids after one or two. Some days I really don't know if I can get everything done. I wake up every day with my mind buzzing with all the things that have to get done. I make my list and as I cross things off, I really feel accomplished, but it just seems that I start the next day with an equally big list. Sometimes I feel like I race through the day trying to get all the tasks complete, but knowing that I'll never be done, there will always be more. I get really frustrated. And then you add on the guilt that I don't really play with the kids as much as I should and I hope that I'm giving each one of them enough of me so they don't grow up warped. It's an overwhelming responsibility. Then you share a funny time with them, and it doesn't seem so bad. Having kids is crazy...
Why is it that working or not, moms always do more (it seems like it to me)? Why can't my husband schedule the dr appt's and activities, sign up to volunteer or pay the bills? I work full time, and yet a lot more still falls on me. Maybe I don't know how to say no. I think that is probably the problem. Just yesterday I found myself going to a meeting (which means I'm on another committee) that I clearly don't have time for. I'm studying for an exam on top of all of this, which will thankfully be on the 20th--hopefully I'll be prepared. I try to squeeze in study time whenever I can--waiting in line, at work when I have a few minutes, or at lunch. I'm hoping its enough. It's a lot of money to waste if I don't pass.
Well, as I sit here and type, there are baby clothes to go through. I need to purge and sitting here is not getting the job done.
Monday, August 25, 2008
So Far, So Good
Well, nothing else happened this past weekend. I am hoping for a quiet week ahead. I have several things to do that I'm not looking forward to, but you know how it goes...you just gotta' do it.
I have to schedule some overtime at work. It always sounds like a great idea--work a little extra and earn some much needed extra money. Debt gets paid off earlier, we have a little extra in the bank. But then to actually do it is sooo hard. I can only work midnights, and that is sooo hard. I can't sleep during the day, and it means I'm up for like 36 hours straight or something. Not really great for being a productive, interactive mom who does things with her kids. And then, one night of sleep doesn't make up for two, so it takes like three days to get back to normal. Then you start all over the next week. It's sooo good for our bank account and so bad for me personally. I guess that's what you get when you have four kids. Giving up myself for them is part of the deal.
My husband is doing great. It's been 6 days since he took any medication and he is still having pain, but is handling it well. I am so proud of him for doing this. He seems so much more clear headed! It's surprising how much better he seems now compared to how he was on all those pills. I figure it's going to save us some money, too. He was spending quite a lot every month on all those prescriptions.
I'm taking my youngest to the allergist this afternoon. I think he's allergic to eggs. Which is really a pain because I also think he's allergic to dairy, and those two things are in a lot. At least it's not wheat.
Oh my, he's up from his nap. Gotta go....
I have to schedule some overtime at work. It always sounds like a great idea--work a little extra and earn some much needed extra money. Debt gets paid off earlier, we have a little extra in the bank. But then to actually do it is sooo hard. I can only work midnights, and that is sooo hard. I can't sleep during the day, and it means I'm up for like 36 hours straight or something. Not really great for being a productive, interactive mom who does things with her kids. And then, one night of sleep doesn't make up for two, so it takes like three days to get back to normal. Then you start all over the next week. It's sooo good for our bank account and so bad for me personally. I guess that's what you get when you have four kids. Giving up myself for them is part of the deal.
My husband is doing great. It's been 6 days since he took any medication and he is still having pain, but is handling it well. I am so proud of him for doing this. He seems so much more clear headed! It's surprising how much better he seems now compared to how he was on all those pills. I figure it's going to save us some money, too. He was spending quite a lot every month on all those prescriptions.
I'm taking my youngest to the allergist this afternoon. I think he's allergic to eggs. Which is really a pain because I also think he's allergic to dairy, and those two things are in a lot. At least it's not wheat.
Oh my, he's up from his nap. Gotta go....
Friday, August 22, 2008
Crazy week, Crazy life...
It always amazes me what a week can bring. You're going along in your life, which I always feel I have planned out, and along comes a bunch of unexpected craziness. I guess when you think about it, that's what life is--a bunch of unexpected craziness mixed in with what you think your life should be.
The beginning of the week started with detox. Not your average start to the week. My husband has a history of chronic pain. Back surgeries, physical therapy, acupuncture, chiropractor...you name it, he's tried it. His doctor had him on some pain medication which wasn't supposed to be addictive. Wrong!! He was needing more and more to get the same relief, and before you know it, he can't stop taking them . I have to admit that in the end, he wasn't being completely honest about how much he was taking, so that was a shock to me as well. So, he came clean with me and decided that pain or not, he's stopping the drug. So Tuesday morning was his last dose and by Tuesday afternoon and into the evening he's in full blown withdrawal. Now, we're just an average family with average problems, so I don't have experience with handling someone in full blown withdrawal. I don't know if you've ever seen it, but it's not pretty. Cold sweats, agitation, anxiety, headache, stomach flu, skin crawling...it was awful. He didn't sleep much and when he dozed off he twitched all over!! I could not believe I was married to someone going through withdrawal!! He made it through and is much better now, but it was shocking.
My son's third birthday was Wednesday. Yes, in the middle of detox. We had planned a party for him--nothing special, just some family coming over for a little cake and ice cream. What could be more American than that?? Elmo was the theme of the day, and I found some great decorations. We decorated the cake and it was a great night. Except for the fact that my husband was freaking out and took a nap in the middle of the party. Super. What was I supposed to say..".Oh, sorry, J's detoxing...can I get you something to drink?" No...you just make something up and go with the flow.
Thursday brought news that was almost unbelievable. It was straight from the movies. My sister-in-law's "friend" went crazy and killed the father of her child. What the f??? Could this week get any worse?? They were having a custody dispute and apparently her "friend" (I won't say boyfriend because she claims they weren't together) couldn't sit back and watch the boy be traumatized any more by this father whom they felt was possibly abusing him. It's not proven, just a theory. In any case, he took matters into his own hands and took care of business (in his eyes, I guess). So now we're waiting to see what happens...hopefully she gets cleared of any wrong doing (she didn't know her friend was going to do this) and they can move on. But seriously, that was enough for one week!!!
Today was Friday and just an average work day. Thank goodness nothing else came up today, because I was beginning to think I should call Jerry Springer and ask to be a guest. I guess I'm not in the clear since tomorrow is only Saturday...that leaves a whole 24 hours for something weird to happen. I'll let you know.
The beginning of the week started with detox. Not your average start to the week. My husband has a history of chronic pain. Back surgeries, physical therapy, acupuncture, chiropractor...you name it, he's tried it. His doctor had him on some pain medication which wasn't supposed to be addictive. Wrong!! He was needing more and more to get the same relief, and before you know it, he can't stop taking them . I have to admit that in the end, he wasn't being completely honest about how much he was taking, so that was a shock to me as well. So, he came clean with me and decided that pain or not, he's stopping the drug. So Tuesday morning was his last dose and by Tuesday afternoon and into the evening he's in full blown withdrawal. Now, we're just an average family with average problems, so I don't have experience with handling someone in full blown withdrawal. I don't know if you've ever seen it, but it's not pretty. Cold sweats, agitation, anxiety, headache, stomach flu, skin crawling...it was awful. He didn't sleep much and when he dozed off he twitched all over!! I could not believe I was married to someone going through withdrawal!! He made it through and is much better now, but it was shocking.
My son's third birthday was Wednesday. Yes, in the middle of detox. We had planned a party for him--nothing special, just some family coming over for a little cake and ice cream. What could be more American than that?? Elmo was the theme of the day, and I found some great decorations. We decorated the cake and it was a great night. Except for the fact that my husband was freaking out and took a nap in the middle of the party. Super. What was I supposed to say..".Oh, sorry, J's detoxing...can I get you something to drink?" No...you just make something up and go with the flow.
Thursday brought news that was almost unbelievable. It was straight from the movies. My sister-in-law's "friend" went crazy and killed the father of her child. What the f??? Could this week get any worse?? They were having a custody dispute and apparently her "friend" (I won't say boyfriend because she claims they weren't together) couldn't sit back and watch the boy be traumatized any more by this father whom they felt was possibly abusing him. It's not proven, just a theory. In any case, he took matters into his own hands and took care of business (in his eyes, I guess). So now we're waiting to see what happens...hopefully she gets cleared of any wrong doing (she didn't know her friend was going to do this) and they can move on. But seriously, that was enough for one week!!!
Today was Friday and just an average work day. Thank goodness nothing else came up today, because I was beginning to think I should call Jerry Springer and ask to be a guest. I guess I'm not in the clear since tomorrow is only Saturday...that leaves a whole 24 hours for something weird to happen. I'll let you know.
Saturday, August 16, 2008
I woke up with a wonderful phone call--they didn't need me at work. Which means I get to stay home and work--just a different sort of work. Housework, babywork, preschool work. I also get to squeeze in my run. I'm training for a half marathon.
The big kids are at their grandma and grandpa's. Their dad and step mom just had their first baby early Friday morning--a girl who remains at this time, unnamed. I am excited for my daughter who up until this time only had brothers. I always wanted her to have a sister. Prayer answered, even if it is in an unconventional way. Her dad and I have put aside our differences and have become friends, in a sense. I figure it's best for the kids if we all get along. So my two year old will occasionally go to his parents, and calls them mimi and papa. Some people find it strange that we get along so well. It works for us.
We are going to my sister-in-laws for my son's three year old birthday party. The official day is Wednesday, but my mother-in-law is down from Torch Lake and we're having a little party, which I "get" to attend now that I'm not working. We're having another party Wednesday night. I'm not sure why, but it always has to be separate when it comes to my mil. I would love it if my mom and her could be friends, but that hasn't seemed to work out, so my mom continues to hang out with my ex-inlaws, which is also strange, I suppose.
So, I'm off to run my run, then do some cleaning out until we have to leave. I'm feeling this strange need to purge our house of all unused items. I can't stop thinking how great it will feel when this happens, but the problem is that it's really hard when you have four kids to really be productive. I wonder if other moms feel this way. I sometimes feel like other people really have it together, and I always seem to be forgetful, a little messy, and generally non-productive. I can barely keep up with the everyday housework much less additional chores. My husband and I work opposite days, so one of us is always home, but the problem with that is that only one of us is always home. And the rare day we're here together, like today, we both have separate agenda's--things we save until the other is available to watch the kids.
Well, I suppose I won't get much done this way....
The big kids are at their grandma and grandpa's. Their dad and step mom just had their first baby early Friday morning--a girl who remains at this time, unnamed. I am excited for my daughter who up until this time only had brothers. I always wanted her to have a sister. Prayer answered, even if it is in an unconventional way. Her dad and I have put aside our differences and have become friends, in a sense. I figure it's best for the kids if we all get along. So my two year old will occasionally go to his parents, and calls them mimi and papa. Some people find it strange that we get along so well. It works for us.
We are going to my sister-in-laws for my son's three year old birthday party. The official day is Wednesday, but my mother-in-law is down from Torch Lake and we're having a little party, which I "get" to attend now that I'm not working. We're having another party Wednesday night. I'm not sure why, but it always has to be separate when it comes to my mil. I would love it if my mom and her could be friends, but that hasn't seemed to work out, so my mom continues to hang out with my ex-inlaws, which is also strange, I suppose.
So, I'm off to run my run, then do some cleaning out until we have to leave. I'm feeling this strange need to purge our house of all unused items. I can't stop thinking how great it will feel when this happens, but the problem is that it's really hard when you have four kids to really be productive. I wonder if other moms feel this way. I sometimes feel like other people really have it together, and I always seem to be forgetful, a little messy, and generally non-productive. I can barely keep up with the everyday housework much less additional chores. My husband and I work opposite days, so one of us is always home, but the problem with that is that only one of us is always home. And the rare day we're here together, like today, we both have separate agenda's--things we save until the other is available to watch the kids.
Well, I suppose I won't get much done this way....
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