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

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

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.

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.

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!!!

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