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.
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