Monday, October 29, 2012

This Crazy Life We Live (yet ANOTHER update on Landon)

I appoligize ahead of time that my family is so confusing and hard to follow. Don't feel bad you're not alone. Most of the time, it seems that I don't really know what's going on either.

Okay read on...

I had a feeling there might be a reason why I just didn't feel peace about Landon not going to Amplatz this month...

I FINALLY got to talk to Dr. Kochilas. We've been playing phone tag for the past couple days. Do doctors ever go home?? I would call him in the morning and he'd finally return my call at like 7:30PM. By that time I had given up hope of hearing from him and didn't have my phone on me. I've learned my lesson, doctors obviously don't have personal lives. We all need to show ALOT more gratitude to these special people because I can't imagine what they sacrifice so that they can save lives and change the future of our children.

Sorry, that was a tangent and I didn't even give you a warning.

He was very easy to talk to and seemed very interested in how Landon is doing. I was surprised by this because I was expecting him to tell me that Landon is fine and they're not going to worry about him unless he takes a turn for the worse. Instead, he told me that he wishes he could get a better evaluation of Landon and that his postponment of the cath was simply based on what Fernandez told him about Landon. "You mean you haven't even seen his last echo?" I asked. "Not his most recent one, no" he told me and the one he did get sent to him didn't show everything he would of liked to see (I guess I'm going to have to be that mom who's picky about who does his echos from now on). He told me that they will want to see Landon anytime between now and his first birthday, but he didn't want to ask us to make the long trip since right now it doesn't seem urgent. I told him that we are planning on being in Minneapolis over Thanksgiving if any time around that would work for them. He was VERY happy with this news and I was amazed at how he said he could get Landon in.

So as of now "the plan"(no guarantees it wont change AGAIN)  is to bring Landon to Amplatz the day before Thanksgiving to have a COMPLETE evaluation. Do our pillow pet project Thanksgiving and the day after. Then most likely Landon will have a heart catheterization done on Monday.


I'm kind of in shock and don't know how to comprehend all these changes. It seems like just when I get used to an idea BOOM!! It changes!!

This is the crazy life we live.

Prayer requests:

Pray for our sanity. I don't know how many more changes I can take!

Pray for SPACE BAGS. We thought we would have time to purchase pillow pets in Minneapolis the day before we hand them out but now I'm sure we'll be at the hospital all day. Maybe we can go down another day sooner, but Ryan does have a job so it's difficult. We don't know how much work he will have to miss because of Landon so we want to use his vacation time wisely.

Pray that Landon's eval. goes well. Maybe there's a chance (I don't believe in chances I believe in miracles) he wont even need the heart cath.

Continue to pray for the special kids God is going to bless. We are still VERY... OH SO VERY excited about the pillow pet project. I just read an article in the brochure we get from the Ronald McDonald house and it told the story of a little boy named Isaac. Isaac is only 3 years old and has had to endure 30 surgeries already. After spending 4 months in the NICU after he was born, he suddenly took an extreme turn for the worst and was close to death. He was then transferred from his hometown in Virginia to Amplatz Childrens hospital in Minneapolis where his family stayed with him for 14 months (14 months!!!) His family lived in the same Ronald McDonald house that Ryan and I stayed at. They are still, to this day, making once a month trips to Minneapolis. As sad as it would be for them to have to spend Thanksgiving there. I so hope that I can hug this sweet child and give him one of these special gifts!

Reading that story gets me even more excited for what God is allowing us to do. It's helps us put a face and a story to these pillow pets. 

The article also says this, "The Twin Cities medical community is treating some of the world's most complex cases, sometimes involving extensive surgeries and procedures, requiring patients to stay nearby for weeks or even months. Due to the critical nature of the diseases treated in this community, the Ronald McDonald House - Oak Street (Me and Ryan's home for a week) supports families for longer average stays than any other Ronald McDonald House program in the world."

(Hot Dish From Our House To Yours, Fall/Winter 2012)

How awesome is that! Ryan and I can't wait to go back there. My only concern is... that we wont have ENOUGH pillow pets to go around. This House provides rooms for 48 families, assuming each of those families has one or two children...well that pretty much wipes out our pillow pets without even getting to Amplatz. I'm not sure if we will go to the House or the hospital first. I almost think it would be better to go to the house on Thanksgiving and the hospital the next day... so you can see my concern.

We are so grateful for all of you and how you have blessed these special children, but there are so many of them and I can't imagine what I would do if we didn't have enough for them. I'll leave it between you and the Lord, but know that if you have already given, we are SO grateful. I never want this to come across as begging or ingratitude for what has already been accomplished through each of you.

God has got it..  we can't forget what He did with barley loaves... I'm not worried :)

Some may think that the news we received today was bad. I wouldn't call it that, in fact, I'm relieved. I'm relieved that Landon is going to be evaluated by some of the best cardiologists in the country. We are his advocates and that means doing the hard things to make sure our little man gets the absolute best care possible. I'm choosing to look at this as an answer to prayer. Thank God He put that mommy instinct in me to keep calling until I got through.

Yes, this IS a crazy life we live, but one look at this face makes it ALL WORTH IT.

Thank you for your support and your continued prayers.
We love you!!


Daniel and Rachel said...

Wow, you must feel like you have whiplash after this week. :) I'm so excited to see how close you're getting to you Pillow Pets Goal! I wonder if you could call a store in Minneapolis (Toys R Us, etc) and ask them to order in however many you still need so you don't have to haul so many with you?

Anonymous said...

So glad to hear all is well, I will be praying for Landon's time is Minneapolis. Keep us posted on what your need are !