MI and OH families help make dinner at Ann Arbor, MI RMD

Just wanted to let you all know that some families that delivered or were cared for at the University of Michigan Motts Children's hospital will be making dinner and spreading CDH awareness!

Tuesday, August 12th, 2008

CDH Familes summer cookout for the Ronald McDonald house of Ann Arbor!

CHERUBS families
English- Henry English LCDH survivor
Valasek- Jayden Valasek RCDH survivor
Miles- Faith Miles LCDH non-survivor

We will be joined by two other families with CDH children!

I know there are a few CDH babes in the hospital right now and we hope to offer those families hope and support.

If I remember my camera I will post pictures!

How neat !! i think that's great!! Dont forget your camera !

Amy-Thats wonderful! Can't wait to here how it goes!

How wonderful Amy!! When Chris and I stayed at the Ronald McDonald House in Utah, I appreciated it so much when other organizations took time to prepare a supper for us. Plus, we got to learn so much about other people. What a great way to spread CDH awareness. Post pics if you can!

LOVE this idea, Amy!!!! I stayed at the Durham RMcD for almost 10 months and then the Chapel Hill, NC one on and off for quite a while too. They were such blessing to be just a block or two from the hospital. Some days I couldn't bear to be out of the hospital at all so I slept on the waiting room floor, no way could I have been all the way home. And the families we met.... still friends with some 15 years later! I learned so much from them and never would've gotten through a lot of without them. I can't imagine staying at a hotel and not having that support. I think what you're doing is wonderful!!! RMcD's are a Godsend to CDH families!!!

Amy, God is working to do great things through you, Steve and Faith. Bless you!

Amy you are awesome, girl!!
Hope you have a blast tonight!

I was never told about the RMcD's. In fact, never really new about what it was until you joined. Our children's hospital is moving and has a new house and all kinds of good stuff I hope to post for new PA parents here soon. Anyways - when the girls get older (for me sooner) I defintely plan on volunteering down there.

Lynne- stop making me tear up!

It was great! It was so good to see everyone again. The little girl that was life flighted into U of M 4 days before Faith passed also had "flubber" and she is a stinking ROCKSTAR! WOw is all I have to say for that little girl and she was so similar to Faith right up to the silo and then that girl took off and they put her organs back in. They were in and out in like 7 weeks!

Anyway, all the babies there are absolutely amazing! It was great to get all these families together as CDH parents.

I am only going to post the photos on my carepage later today as some of them are a part of another group and I don't want to put their child's picture up and anger them. I don't think they would get angry, I just want to respect them. I found all these CDH families through carepages, friends, or during our stay at the RMD house. Absolutely amazing people!

Katie (Jayden's mommy) and Katie (Henry's mommy) both came and their boys are so gorgeous! Absolute miracles.

Six families took part in this and we hope to do it each year and have more families help each year.

That's so great Amy! So glad to hear you had a good time together!

Did not mean to make to make to cry but He is working through you guys. People say that God has plans for Baer because he made it, but the bible says that we are all called and I believe that. If you look at Shane's life and what an impact that little boy's legacy has made on so many people, that is Gods work and I for one give him all the glory. He is using you, Steve and Faith. "For I know the plans I have for you," declares the LORD,
"plans to prosper you and not to harm you,
plans to give you hope and a future.”
JEREMIAH 29:11 NIV
God will use you if you let him. Faith's life and being has a purpose and you are honoring her by helping others. I bet this is something you would not have been doing a year ago. Sometimes we treat and help others pain so that we can heal our own. You guys are wonderful.

Amy I am so glad that this turned out so well! Please let me know when you have the next one scheduled! We will help in any way that we can. We did not stay at the RMcD with Log but I sure wish we had!! We knew about it but it somehow slip thru our minds!

Barb

This is WONDERFUL!!!!!
Amy--your strength shows in all you do.

Amy:

I don't know if you'll see this, it's been a couple weeks. But you know I wouldn't get mad if you posted those pics! LOL

Anyway, it was great seeing you and Steve at the RMH... Hope to make it an annual thing!

Thanks again for arranging such a nice event! You are truly an amazing couple, and it warms my heart to know you are continuing to spread CDH awareness after all you've been through. You affect more people than you know. You rock!

How is Henry doing Katie?

Great, actually! Thanks for asking. He's taking all od feedings by mouth, during the day. He takes 100 cc's or close to it at most feedings (which is twice as much as he was taking when he was getting tube feeds arounds the clock) He gets fed through the NG only at night, continuously for 10 hours.

And, the latest is, he went for a sleep study last night (I'm still recovering from that, very sleepy!!! ) :roll:
They couldn't give me the results yet, but they did tell me that he was able to go the whole night without any O2. I'm really hoping he can come off the O2 soon! No more lugging tanks everywhere we go-that would be wonderful!

I'll let you know when I found out the official results.

Tracy:
I just noticed that Ian had an undescended testicle. Henry has one also. If you don't mind me asking, how was that surgery? Was it hard for him to recover from that?
Just wondering. Henry sees a urologist later this month about it. I'm not sure when he might be having surgery to fix it, though.

Thanks!

Sounds like Henry is doing very well with his feedings!! That is great news that Henry was able to go the whole night without any oxygen--prayers that he may be able to come off in the near future. That would take some relief off of your sholders, carrying around or lugging those O2 tanks. Please let us know when you get the official results. Give that cute baby a hug and tell him he is doing so good!!

Ian's undescended testicle surgery was done on day 48 of his life when he had his inguinal hernias repaired. The doctors felt Ian's left testicle was so high up in the abdomen and they thought it would never descend on its own. Usually, doctors like to wait 2 or 3 years and see if the testes descend on their own. All the doctor did was put the left testicle in the scrotum sack and stitch it to the scrotum sack. His testicle can be found still high in the scrotum sack, but the doctor has not wanted to do another surgery, for he feels he wouldn't be able to bring it any lower. He was still on morphine at the time, so there wasn't much pain for him. He has a small scar on the scrotum sack and the other incision was where they fixed his inguinal hernia on that side (they used that incision in the groin to put things back where they should be.)

Keep us posted on Henry and how he is doing. Let us know if he has to have another surgery or not.

They say to have the surgery done to prevent fertility problems later in life and to help detect testicular cancer. Doctors did say men that are born with an undescended testicle are at a higher chance of developing testicular cancer. Whether Ian's fertility has been messed up, we won't know that until he decides to have kids (long time).

Let me know if you have any other questions.

Love Henry's new Avatar picture - he is so adorable!! And that smile--what a sweetie!!

Tracy:

Thanks so much for the info! It sound like Ian's problem was more severe than Henry's. His left testicle is in the groin- it can be palpated- which is good. At least we know where it is. So, hopefully I'll find out more, like treatment plans and prognosis, when we visit with the urologist, later this month.

I have done research and am a little concerned about possible damage to the testicle. I know that if both testes are down, they take it more seriously, because of possible sterility. Henry is our only son, and our last child (Four is enough for us!!!)... So we just want to make sure everything is ok in that regard.

Well, thanks again!
Hope Ian is doing well.

Ian is doing very well. He starts preschool next week and I am scared, happy, nervous, you name it and I am feeling it. He is so excited and is all ready--too cute to see him run around with his "Cars" backpack and he keeps asking me, is it school today?

You must be a busy mom with all 4 kids!! 3 is a handful for me! Part of me always wants a little girl, but I don't know if we could do 4. My boys can make me crazy somedays!! LOL--good crazy though.

Keep us posted on Henry's urologist appointment--hope it goes very well and you come up with a treatment plan. If he was to have another surgery, he is so young, he won't even remember it. Ian was still in the NICU when he had his surgery, but I think a lot of the time, the surgery is done on an outpatient basis. So not that bad, maybe just overnight.

Just wanted to let you all know that I finally posted a few pics on our carepage from all of our activites in memory of Faith from the summer.

CP: faithgracecdh

Thank you Amy.
Will be taking a look today.
Hope all is well with you and Steve.
Think of you both often.