Saturday, May 31, 2008

Please Help Me Raise Money For A Wonderful Charity

I am not one who likes to ask for things. I have a hard time asking for help even if I need it and the only thing I don't have a hard time asking for is prayers on behalf of my babies.

But this is different.

In case you haven't noticed, in my sidebar is a Chip In box for a fundraiser that I have been silently doing to help raise money for the Denver Ronald McDonald House. I want so badly to go back there this June with a donation on Noah's behalf. I, myself, can not afford to give all that I would love to give (his medical bills are just too much) and so I ask those of you who can, for help.

Two wonderful friends have already donated to get help get me started (thank you Jeannie and Jen) and for the rest of you who are interested, we have until Noah's birthday on the 11th. That is when the fundraiser will close. Then, when we go back to Denver on the 14th, I will be donating all the funds to the Ronald McDonald House in Noah's name with a card that had the names of all the donors names included.

Please help me thank this wonderful Charity for the HUGE blessings they gave us this past year. All you have to do to participate is click the banner in my side bar. Its really easy. And I promise, all the donated funds WILL be given to the Ronald McDonald House Charity.

For those of you who can't give, that's okay. Your prayers were more than I could have ever asked for.

Thank you and much love to all!

Thursday, May 29, 2008

Clinic Update and 4 Month

Noah had transplant clinic today. Want to know what is really exciting? He may not have to go again until October!! You read that right! OCTOBER!!

His next appointment would be in June but we are going back to Denver for his One Year Heart Cath. If all goes well (as I suspect it will since his med level was good and his echo looked great, and he's doing so well they didn't even need to do an EKG today) then his schedule moves to every 4 months!! Which means we won't need to go back up until October!! We'll go back up every 2 months to check his Cyclosporin level but he will only need Echo's every 4 months for the rest of his life (and then routine Heart Caths every two years).

I have to admit, when Marian first reminded me about this, my heart actually skipped a beat.

You see, there comes a level of comfort in going to clinic every so often to have his heart checked to make sure everything is ok. To know we won't be going, is a little scary. But then, to know we won't be going... there is some freedom in that too!! What a wonderful thing! And Marian said if I ever get a little worried and want him to be seen, all I need to do is call and come on up. (They don't like to go as long between appointments as Denver does. But I am sure they would be more than happy to see us regardless.)

Man... Its just so weird to think back upon this past year. With everything that we have been through. To think all of this has happened in only this short period of time. There were times it seemed like we would never get to the point were things were normal again. Were things would never calm down. There were times when it seemed like life would always focus around the NICU (or the CICU) or around weekly or bi-weekly Hospital visits. Sometimes going to the hospital every day of the week. And yet, here I sit... feeling normal (if I dare say it.) Yah, we go to the hospital, but not nearly as much as some. Yah, we deal with daily medication, but not nearly as much as some. Yah, we have Occupational therapy and Physical Therapy, but not nearly as much as some. These are things that everyone deals with on different levels. What matters is I have a beautiful son, and a happy family, and we are blessed.

I am involved in Congenital Heart Defect Awareness and Heart Transplant/Organ Donation. My Brother and his Family are involved in Preemie Awareness and Hydrocephalus awareness, My Sister-in-Law's sister is involved in Kidney Transplant Awareness... What I am trying to say is that we all have our "things." I'm proud of my little hero and all of the awareness (and faith) he has brought me.

Tuesday, May 27, 2008

Where Are My Ear Plugs? WHAT? Where Are... Never Mind...

We went to Idaho this past weekend to visit Shane's family and had a WONDERFUL time. I will post pictures all about our wonderful time over at Memoirs of a Mommy very soon.

Noah did really well the entire time. He slept and napped well. On the way there he slept and was a good boy.

But it was an entirely different story on our way home.

A trip that would normally take us 2 1/2 to 3 hours took us 3 1/2 hours, required 2 stops, and we had to listen to Noah scream the entire time. And I don't mean off and on he cried. I mean he SCREAMED and SCREAMED and SCREAMED the ENTIRE time we drove home. By the time we got home I thought I might just be losing my mind.

It was horrible. There was no reason for him to be crying. Then this morning he was crying again. Shane put him back into bed and he fell back asleep. When he woke back up 2 hours later (off his normal schedule) he was better.

Our friend, Brennon, has been screaming all day today too. I wonder if they can sense something. Like how animals can sense Earthquakes or storms coming... wouldn't that be strange?

Tuesday, May 20, 2008

A Few Pictures

He's getting so big!

Sunday, May 18, 2008

Still Waiting and The Sickies

Noah got his Cylco level checked last Thursday. We still haven't gotten the results back. I'm hoping the are within range.

He is also still sick. He has the nastiest runny nose and a cough. It just won't go away. It's either a virus he can't shake or his allergies and asthma. I think it's a virus. But I'm getting really sick of boogers.

Thursday, May 15, 2008

A Yard Sale!!

That's Right!!

We are having a yard sale! Shane and I finally found the time to sort through all our stuff and we are having a Yard Sale this Saturday to help pay off Noah's medical bills.

So, if you live in Salt Lake (or any of the surrounding areas) PLEASE come on over. If you need the address, send me an email and I will send it to you.

It will be Saturday at 7am until everything is sold or people stop coming (at least 1pm).

We really appreciate your support!!

Wednesday, May 7, 2008

A Beautiful Place

Beckham's Mom, Kim, told me of another baby... soon to be born Mia... that was diagnosed with Critical Aortic Stenosis and a bad Mitral Valve. She too will need a Heart Transplant when she is born.

This is the first baby I have learned about that had Noah's same diagnosis. Until now, Beckham has been the only other baby with Heart defects similar to Noahs. Many of the precious Heart Babies I have met are HLHS.

Now, this doesn't really matter. But I guess because when I first found out about Noah's condition I felt SO ALONE. I had never heard of anyone who had been through this sort of thing (That is VERY different now) that I feel a greater connection to those who have the same diagnosis. It's almost like I have an instant bond with them because they know they same terms and the same procedures and the same circumstances... the world of HLHS can be very different. (although, my favorite poem was written by a mother of a HLHS baby so I guess it's not all that different.)

Anyways... I guess what my ramblings are trying to say is that I just feel extra sensitive when I hear about a baby who has the same condition as Noah. It touches an extra tender spot in my heart because I know. I feel it. I live it.

And while I know there really isn't anything I can say that will make their journey any easier. It's a journey that only the Lord can carry you through, I hope (and pray and pray and pray) that by seeing Noah now (MY JOY) they will know that things can and will be better. That it's a rough road that leads to a beautiful place.

My prayers are with you baby Mia and family.

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