"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

Wednesday, June 10, 2009

UPDATE

Wow, we should ask our prayer warriors to unite more often! After asking for your prayers, Erin got two pieces of great news yesterday. First, she has an interview on Thursday so if you could continue to pray that she does her best on the interview and that God's will will be done, that would be great. Also, we did find out that we are eligible to continue health care coverage for 9 months and because of the new laws related to the March '09 stimulus package, her former employer will now have to pay 65% of the premiums as opposed to us having to pay the full 100%! Isn't that a blessing?!

Just wanted to let you know your prayers are being answered! We continue to marvel with God's handiwork.

Also, I wanted to pass along another bit of God's greatness. I've been following a story of a little 8 year old boy named Tommy. He's been quite sick in heart failure for at least the last 15 months to the point where he was vomiting during every meal, etc. He didn't even have energy to brush his teeth anymore. Well, a few weeks ago, one of his best heart buddies lost his battle with Congenital Heart Disease. About a week later, Tommy's mom got the call that his new, perfect heart was ready. He got the heart transplant last week and is now out of the ICU. Here is his mom's latest update. She mentions in it the story of the survival flight crew that crashed two years ago on the way back to the hospital with a harvested heart and lungs. We had just made arrangements to go to Michigan when that story hit the national news and we saw Dr. Bove's picture and name in the StL Post-Dispatch. It is chilling to read the events that took place up there the last couple of weeks.

"I can't believe that it was one week ago (in about 3 hours from now), that 'the call' came in. Each day I feel like it will all start to sink in more but each day I am more overcome by another facet of it all. It was also one year ago today that Tommy was officially listed for a heart (after finding out on May 6th that this was the road we were taking).

Tommy was moved out of the ICU today and onto the general floor into an Isolation room. We soon found out that his 'transplant sister', Lindsay, was right behind him! He is doing well but says he is a bit 'confused' and he's been quiet, but we are working through it. His echo showed that the Tricuspid valve leak is improved and so his the function of the right ventricle so we will take that and give thanks!

Tommy also got up and walked today for the first time! He did real well, and peeking in on Lindsay from the window next door was a great incentive! He said he felt 'woozy', a little light headed and tired after a brief stroll (all to be expected at this point). His body has been so used to being in severe heart failure for so long and working so hard to do the simplest of things, that there is a lot to get used to for both his body and his new heart.

When I think of all the things he could not do over the last 15 months, like go to school, be outside last summer (the heat was too much), or outside in the winter (the cold too much), play outside, climb stairs, run a base, he has never been on a bike, eat without gagging and vomiting, be able to get through a meal at his favorite restaurant or more recently go to church as a family (although going to public places like these will still be off limits for 3 months). Recently, he was even unable to brush his teeth at night from exhaustion and his daily naps were getting longer. When I think of what Dr. Ohye said about the real condition of his heart, I lose my breath.

The emotions I find myself having are ones I don't think I have allowed myself to have up until this point,..combined with the timing of things and the circumstances of the previous 3 weeks,..it's really impossible to describe. Today I was reminded of another 'part' to this Miracle that caused me to lose it, yet again. On the day of Tommy's transplant there was a dedication ceremony taking place in the front of the hospital for the 6 lives lost 2 yrs. ago on June 4th when Survival Flight crashed with an organ procurement team coming back here to do a surgery on a 50 yr. old man. A sculptured wall was built, made of 600 stainless steel flaps, designed to rotate when Survival Flight or a Helicopter comes or leaves UofM. During the ceremony, at about 1:45pm, Survival Flight flew over the sculpture and the flaps began rotating, as if done on purpose,..that flight had Tommy's new heart on it (chills).
I went out and looked at the sculpture today and can't stop thinking about the families who lost their loved ones while doing their job and saving lives.

So, I offer a prayer of thanks for all of those in the medical field who have a passion for caring for others and saving lives. I am especially thankful for the amazing team of doctors and nurses who have been by Tommy's side for almost 9 years."

God is Good. There is a plan. Reading stories like this helps remind me of that when we are in those 'dark' hours. If you'd like to follow Tommy's page, go to carepages.com and then visit. The carepage name is ThomasEarl.

Monday, June 8, 2009

Minor Adjustments

Conway went back to the Orthotic and Prosthetic Lab today at the request of Ms. Deb, his PT, to get his left brace trimmed down a little. Last week we discovered it was rubbing on his poor pinky toe and causing a little blister. Jerry shaved off about 1/4 inch and then heated the material and turned it out a bit so that it won't rub there anymore. Hopefully this is makes for a better fit. Jerry pointed out how on his right foot he seems to be relying on that orthotic a lot more than on his left foot. That just indicates how much stronger his muscles are in his left ankle. He's really leaning in on that right foot. I guess that definitely means he's a lefty. We've noticed a left-sided dominance for sometime with eating, throwing, kicking, etc. Makes sense, I guess.

In other family news, we are requesting that you please pray for God's guidance as Erin seeks employment. We are really just hoping to hear His voice in this job search and know that ultimately, His plan is for the best (even if it is not what we think/thought would be the best!). Right now, however, He seems to be keeping His plan a secret. Our family's health insurance coverage is set to terminate later this summer so we are sure hoping He gives us a hint by then!

Sunday, June 7, 2009

Strawberry Picking

We took the kids strawberry picking this morning at Lakeview Farms in St. Peters. Connie wanted to be held (consequence of his poor sleeping at night), Mookie complained about straw in her shoes (consequence of not listening to me when I told her to put on socks and tennis shoes) and Cece was helpful. We didn't get a ton of pics because the camera froze up on us. Goes to show you what can happen when you have expectations!! When will I learn?!




Last night, after mass, we wanted to go to a nice restaurant with ambiance. We drove by McGurk's and the patio was overfull. We decided to head down to the St. Charles riverfront and eat somewhere outside on Old Main Street. Well, after parking and walking to four places, we decided the kids couldn't wait for 45 minutes (apparently everyone had the same idea as us!) so we thought it would be fun to take them to see the fountain at Ameristar and to eat at one of the restaurants in there. Again, we had expectations!! Connie was afraid of the fountain. You can't really see the fountain in these photos, but it is pretty neat in person. Here's what we could get. . .notice Mookie is trying her hand at comedy and makes silly faces in most photos these days.