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Thursday, November 24, 2011


Happy Thanksgiving everyone! I hope you all are having as wonderful a day as we are. I know sometimes this blog can be a real downer, so I decided that today I would post a list of things I am thankful for.

I am thankful for my health. Not everyone is lucky enough to be healthy and we all need to appreciate it more.

I am thankful for my job. It provides us with a second income and gives us enough financial support to be able to do most of the things we want to do with the boys.

I am thankful for our health insurance. I know that sounds a little funny but I really am. Having a child with multiple medical issues, we'd be DEEEP DEEP in debt if it weren't for our great insurance. So I'm thankful for it.

I am thankful for our home. Not everyone is able to afford their own home and I need to appreciate it more that we are able to own our home.

I am thankful for my new van, Vannie as Nathan calls it. I just love my van (never thought I'd love a minivan so much) and am super happy with it.

I am thankful for my family, the family who are an active part of our lives. Nathan's health has been extremley stressful on all the relationships within our family and I've learned a lot since he was born. The most important lesson I learned was that family is more important than anything else and you only get one. Our family has been so, so supportive with everything we have been through. I'm not sure we would have made it through Nathan's first year without our family.

I am thankful for my husband. Although I may complain about him more than I should he really is a wonderful husband. He goes out of his way to do nice things for both me and our boys. He is the best Daddy I could have ever wanted for our boys and we are all lucky to have him, even if he can't seem to remember to switch the laundry.

I am thankful for my children. I am thankful that I get the opportunity to watch them BOTH grow up and live their lives. There were times when I didn't think Nathan would ever see his first birthday but he did. I have too many friends that lost the opportunity to see their children grow up. They have taught me to be thankful for my children. Those friends would give anything and endure health problemsjust to be able to hug their child again, give them one more kiss or hug. It's those friends who taught me to be grateful for what I have, not yearn for what I don't.

There are zillions of other things I'm thankful for today, those are just the major ones. So today I encourage you all to be thankful for what you have, and hugs your kids just a little tighter.

Wednesday, November 23, 2011

Things I've Learned...

I've learned a lot of new things over the last 4 years, most of it related to Nathan but some of it about myself. Here is a list of things I've learned:

1. Doctors aren't always right
2. Doctors rarely know what is best for MY child
3. Nurses always mean well but some of them are burnt out and should leave the profession.
4. If it's been a bad day I think it's my personal responsibility to let above mentioned nurses know exactly what I think of them. This sometimes involves tears on their part.
5. Some nurses love Nathan just as much as I do.
6. The best nurses see Trevor come to visit and bring him snacks and juice. I love the ones who go out of their way to make my chunk feel special.
7. Nathan is the strongest person I know.
8. I can't take jokes about my parenting skills.
9. I have no problem telling a doctor/nurse/pca how to do their job if how they are doing it affects Nathan.
10. No IV is so important that Nathan needs to be treated like a pin cushion to get it. If you can't get it in 2 trys you better find me someone else.

That is just a short list to get you through until tomorrow when I post things I'm thankful for.

Tuesday, November 15, 2011

Angry Rant

Here are some differences in my two kids

1. Nathan would go the rest of his life without food; Trevor couldn't imagine going 10 minutes without

2. Nathan loves to run fast; Trevor loves to play peek-a-boo

3. Nathan goes to school; Trevor plays and eats all day

4. Nathan knows the path we take to get to the hospital, the doctor and every medical building in the capital region; Trevor doesn't

5. Nathan knows pain and true fear; Trevor doesn't

I know that Nathan has been through a lot, you never need to remind me of that, I will never forget all the hours I've spent at Nathan's bedside. I know Nathan's health problems can seem intimidating to most adults, but he's just a little boy who wants to be loved by his family and liked by his friends. He  wants nothing more than someone to play trains with him, read books with, and play silly games with. He is NO different than any other child so please don't treat him like he is.

I hate when I see one person treating my two children different. I hate that Nathan is treated badly because of health problems that he has no control over. If you want to treat someone badly treat his former surgeon badly, he caused most of his current problems and I have no problem with that.

With all that being said I have made a decision, I will no longer sit idly by and watch. From now on I will bring to your attention how poorly you are treating Nathan. I will give you one and only one chance to correct your behavior and then we will move on, with the offender no longer a part of our life. I simply can't allow Nathan to be treated badly anymore. This is true even if he doesn't seem to notice how he is being treated. Also, most people do not treat Nathan any differently than Trevor. There are just a few people who can't seem to treat him the way they would want themselves or their children to be treated.

Thank you for listening to my rant. Back to regularly scheduled programming.

Friday, November 4, 2011

Home Again

The day after my last post Nathan was able to come home. Matt came out to Boston to visit us and was able to drive us home that evening. Since we didn't have clothes for Nathan we took him home wearing a hospital gown wrapped in a blanket and Daddy's coat. He has been doing good since he's been home. We go back to the hospital twice next week, Tuesday for a swallow study and then Thursday for an airway evaluation. Thursday he will stay overnight and then come home Friday.

The boys have both been doing great. Halloween was just a couple days ago and they were both very cute. Nathan was a firefighter and Trevor was a cow. Nathan had preschool and they had a parade and a party that we were able to go to along with all his grandparents. Nathan loved having all of us there and showing everyone his things at school. Trevor loved eating all the party food. Then later in the day we took the boy's to Grandma and Grandpa's house to meet us with cousins and go trick-or-treating together. Nathan had a good time with the other kids. One house gave out trucks and that was great for a kid who doesn't eat by mouth.

Today was Nathan's first school picture day at school. We got him a haircut yesterday and a new shirt to wear. Matt got up with him today and did his hair for him, hopefully he smiles rather than cries. I can't wait to see the pictures.

Trevor has been going to the daycare at the gym each day with me. He is only there about 30 minutes while I get some exercise but he cries the whole time. He started out sobbing with real tears but now he's down to whining and wimpering with no tears. I think maybe in the next couple weeks he will learn to love going there and playing with all the toys.