Friday, December 11, 2009

Happy 1/2 Birthday Princess!

My personal favorite ;-) She is growing too fast!!!!! Annabelle would be so proud of my bow!
Here ya go Mandy! The princess has a little "southern bell" in her! ;-) And I love it! We even went with a smocked christmas dress too. (The red one in the other pics.) Enjoy!

So sweet!


Heart......melting...........!



" You said what"?




Hey! Come back here................





Where's Lindsay? PEEK!






Precious.

Today Lindsay is 18 months old and her heart is 6 months (as of the 5th anyway). Can you believe it?!! Emotional isn't the word to describe what we are gong through! So grateful, humbled, and blessed to be able to see this day and the days ahead in her lifetime. Lindsay of course is crawling now and getting speedier by the day. Let's just say the gates have been busted out of storage! ;-) She is very good at pulling herself up and if i were a betting woman, I would bet that she will be walking by February. We shall see! Lindsay is doing better with real food and has been totally weened from her thickened formula. Now that is a HUGE step! It was a little nerve wracking going to just plain Nutren Junior. I was waiting for the throw to happen at any moment after I fed her. But, it didn't! SOOOO grateful. Amazing what a good ticker can do. Lindsay hasn't puked for almost 3 months now so I think we are over that whole phase in her "sick heart" life. Her last clinic visit was in early November and Dr Gajarski said that she looked incredible and was so happy with how she was improving. No talk yet of a biopsy which is phenomenal! I'm sure it will come eventually, but for the time being, we will take it! Lindsay is definitely developing her own personality (yeah, like she didn't have one before......princess!! ha ha) and is starting to become a "normal" toddler. The tantrums and everything people! ha ha I will NEVER complain about that!!!!! God is good! Also, on her last clinic visit, we discussed her elevated heart rate and Dr. G discussed putting her on a Holt monitor, so that is what we did for a 24 hour period of time. It was decided that her resting heart rate was in the high 140's. Not exactly ideal but not that unheard of in a transplanted infant. So, she was put on a new medication to try and get that lowered a bit. We will find out for sure when i take her into the cardiologist here in town and check it. Maybe that will be on my list for next week.
I would like to take this opportunity to thank all of you that were able to come out to help support William and Make A Wish Michigan for Team Taylor. Although a less than desirable day weather wise, they we able to raise about $2000.00 to help to make William's wish a reality. I went out that day as well and was bummed that I missed meeting William himself, but I am sure that he is one thrilled little 5 year old! So blessed to have an organization like Make A Wish. His smile alone is worth all the effort!
Well, Christmas is almost here. (big sigh!) Again with the emotion thing..........so blessed to share this with our daughter....at home. Decorations are going up little by little......still no tree. Long story about that but we will finally have it up by the end of next week and I can't wait! Then there is the wrapping obstacle! Ugh! I should really learn to wrap as I buy! ha ha Again, NOT complaining! ;-)
Enjoy the new photos of the Princess! Once again, Patti rocked it! I will post more candids later on.
Love to you all!
Suzie

Monday, December 7, 2009

Paying It Forward Project To Help William!!!!!!!

Tomorrow, WKZO's Lori Moore will be at Don's Card Hut at Southland from 11am - 1pm autographing her Holiday Dish To Pass 2009 cookbook. The cookbooks are only $5.00 each (or more if you choose to donate more) and 100% goes directly to MAW (Make A Wish) Michigan who has chosen a 5 year old Kalamazoo boy named William to receive his wish of going to Disney for the holidays. Wouldn't it be great if we played a part in sending him?

If you are not able to attend this live event and want to purchase a cookbook, please e-mail Linda at linda.smith@mwcradio.com and I will see to it that you receive the cookbook and get the money to MAW Michigan.

Every dollar raised will be credited to Team Taylor, Rob Grainger's bike team that rides 300 miles every summer to raise money for MAW Michigan. Many of you know that Taylor was my former neighbor girl who was born with HLHS and lost her battle at age 15 before she received her wish.

Heart Hugs,
Linda (Lindsay's Grandma)

Wednesday, November 25, 2009

Dear God............


One year ago last week, we were told that Lindsay was officially listed for a heart transplant. At first it was ok, any day from that point, we could get "the call". Cell phones were charged at all times and numbers to everyone in the immediate family were given in case for some strange reason they couldn't get a hold of us. The wait and the journey to me, officially began there. Thankful. The next week was Thanksgiving. A little strange to have our thanksgiving dinner in the hallway at the hospital, but we made due. The meal was delicious by the way and probably the best turkey that I have ever tasted! A catering company donates their services to the families of the children in the hospital every year. It really was a great dinner. Just strange. It was strange to not have the whole family together sitting at the beautifully decorated table and eating until we couldn't possibly fit anything else in our bellies. It was even strange to not have the conversation around the table that we usually do. I remember eating and then I went and found a reclining chair in the ICU waiting room and fell asleep for about 2 hours or so. My mom spend that whole time loving on Lindsay and to be perfectly honest, I was so exhausted from the previous months ups and downs, I can't even tell you where the boys, husband, and step-father went off to during this time. Apparently I needed to catch up on some sleep and relax a little. Thankful. In Lindsay's short little life, she had already missed having two holidays at home. More my sadness about that than hers I guess. The next holiday, (deep breathe) Christmas. In this past 1 1/2 years, I have really made HUGE strides in just letting things fall as they should instead of being the planner that I always have been. I would really get bent out of shape when plans would fall through or my day didn't go as expected. I don't do that anymore.....because I can't. I can't do that because if I did, I would end up in the loony bin!!!! Thankful. I have also grown closer to God........Thankful! He has given me strength when I needed it the most and He has also taught me to "go with the flow" a little better. We almost lost Lindsay 4 or 5 times that I can think of and one of those times.....well, If you have been following our story, you know what we had to do. Something no parent should EVER have to think about or even discuss. But we did. Crazy as it sounds, I'm thankful for that as well. I think because of that, my husband and I grew even closer. They say that in tough times like this, married people tend to drift apart and to be perfectly honest, in some ways we are closer. Thankful! At this point, the Lindsay Dean Heart Fund committee went into full force trying to raise enough money to keep us out of the hole and not loose our home. Well, we are here, still have our house........Thankful! I have been asked lately......how are you guys doing financially? Really, I don't how to answer that one. I think we are struggling like every other American out there but ours is a little different. We did have to fall from a double income household to a single income and trust me, I have fallen asleep many nights with migraines worrying "what in God's name are we going to do?" And then it happens. Some generous persons gave us a gift(you know who you are) so that our children will have a memorable Christmas at HOME and to take the burden off of us to be able to enjoy it instead of worrying about how we are gong to pay off the credit card when the bill comes. Thankful. And this is just one. There have been many "surprises" our way. Thankful. Now, I have always been a "do it myself" kind of person and really have never asked for more than $20 bucks to borrow. So, the generosity that has been given to our family.....ahhh....well, Thankful. I have been trying to "pay it forward" already with a few things that all of you will read about in your Christmas letter, but I struggle with repaying all that has helped us. I don't even know if that is possible. I know what you are going to say, "Suzie. You are crazy. You will NOT pay us back because we know that you would have done the same for us." But that is how I am feeling and I think I will always struggle because that is how God made me. Thankful....I think. ;-) We are blessed beyond what words can explain. I think that maybe that's my dilemma. I don't know what I can say that could possibly express how we feel towards all of you. I just don't know. All I know is that we are THANKFUL for all of you and we will always hold you near and dear to our hearts because if it weren't for you, we would be living in a one bedroom apartment in the slums. No joke.
So, as I prepared some super yummy potatoes tonight in preparation for tomorrow, I get teary eyed knowing that we don't have to go find a chair in the hallway to eat, or go home to get the kids so that we all can be together. We were blessed by a selfless donor family that has given us this opportunity to share with our daughter, as a family. Thankful. They have given us Christmas, New Year's, Easter, etc. to share with her. Thankful.

Dear God~
Thank you for making this day possible for our family. Thank you for giving us this opportunity to thank all of our loved ones and who have prayed for our family during this past year and a half. Thank you for letting us serve you and getting to learn and know you better through Lindsay. I believe you did this all for a reason, and reasons I have yet to have clarity on, but maybe that is your plan and I will accept that. I have learned to accept what you have given us and sometimes I may not know how to handle it, but in time you show me how and everything turns out as it should. You knew Lindsay had a purpose. You sent the donor family our way and your plan is coming together. I pray though for those that don't get to have this precious time with their loved ones. But, that is your plan and hopefully people are learning from you and what you have layed out for them. Thank you for our boys. Thank you for giving them the strength to know the mommy and daddy will be back home together soon. And......thank you for being you. For that, we are THANKFUL.
Amen.

Happy Thanksgiving to all of you!
Heart Blessings!
Suzie

Monday, November 23, 2009

Working, Parade, Concert, Pictures, and Crawling....

I am going to start with the most exciting news first............Lindsay is crawling!!!!! WOOHOOO! What a joyous day this was when she started to do this last week!
So proud of herself!

She hasn't quite mastered multi-tasking yet.......talking and crawling at the same time. ;-)


A little preview to what Lindsay wore for her "Christmas" shoot ;-) I'm sure Patti will have a sneak peak for us very soon! Mandy.........My Mom made a pillowcase dress for her.....soooo cute! I can't wait for you to see it!
Cole and his buddies Garrett and Jacob at their Thanksgiving concert. Handsome lads.......
Look at 'em go! So cute! Sad, but true, the whole time I was watching my adorable son sing his heart out, I was thinking....."Oh my god, there are allot of germs floating around in here. I hope this ends soon!" Yes, the thoughts of a heart mom I guess. ;-) Lindsay was safe in the arms of Elaine at home......and away from the germs!
Lindsay at her 1st Holiday parade! It was an absolutely beautiful Michigan day and totally unseasonal weather for sure. We were able to walk around downtown and chat with some friends that we ran into without worrying if the kids were freezing or not. That was a great day for sure!
The boys were thrilled with this balloon! Lindsay couldn't quite figure it out but she ended up smiling at it. ;-)
I hope you enjoyed my little "catch up" post. I have been so busy catching up on bookwork for the business that took a backseat from January until August.......I wonder why?! Anyway, I'm almost caught up and when I had the thought of updating and sharing cute little stories with you, I would look at the clock and it is 1 or even 2 in the morning! NEED SLEEP!!!!!! I promise, the next post won't be three weeks away. I'm planning even another in the next day or two.......we have ALLOT to be thankful for this year!
Love to you all~
Suzie

Sunday, November 1, 2009

Busy, Busy, Busy!

That would be a GOOD busy! Enjoy!

OK, I'm starting off with the "whopper"! Now if this isn't the greatest sight! Three miracle children all together and NOT in the hospital this time.......priceless. Brittney, Lindsay, and Tommy...........oh how we are blessed to have them all!
Weekend before last, we went to the annual fall picnic that Hearts of Hope puts on for all the heart children and their families. The kids could dress up if they wanted to and they were able to go on a wagon ride, pick their own pumpkins, have all the hot dogs and drinks they wanted, and even got to pet some pretty cute animals in the barn! The above picture is of Lindsay and another adorable little heart sister, Madison. Madison was at U of M in November......as were we! ;-) ha ha

Isn't this the cutest clown and kitty that you have ever seen? Lindsay and Tommy........cute together huh? ha ha Colleen and I were tearing up as we took this photo. Oh, what a journey! AND check out those pretty PINK lips people!!!!! Oh, what a new heart can do!
Speaking of "oh, what a journey", I have quite the story for you! We headed to the hotel that we were staying at the night before the picnic and got an early start in order to watch the U of M football game at the hotel and then after the game, we could take the boys swimming and then order pizza and have a slumber party with all three kids! Sounds good, right? Well, not so much! It was raining when we got to the hotel so we went as fast as we could (yup, hubby still on crutches!) into the lobby and we were going to stay in the room until it stopped raining to get the rest of our stuff. So, in time, it stopped raining and I went down with a luggage cart and loaded it up with our things. Made one quick check around Lindsay's car seat to see if I got everything and happened to glance into her car seat. Hmmmmmm, a g-tube isn't supposed to be laying there! It is supposed to be ATTACHED to her! OMG!!!!! I asked myself.....when in the **** did that come out?!!! Knowing that we only had a few hours before the "hole" in her stomach would close up!! So, I very swiftly went up to the room, started flinging things around to unload and looked at my husband and said, " We can't do anything easily can we?" Hubby: "What do you mean?" Showed him the "escaped" g-tube and he looked at it in disbelief! Hubby: " Oh My God!" "What are we going to do?" Of course I don't have my emergency g-tube kit with me......so, knowing that Colleen and Tommy aren't that far away, I called her to get a recommendation on which hospital to go to. Beaumont Royal Oak was phenomenal but I do not want to go there again! ha ha Lindsay is the proud owner of a new g-tube and was just fine in the meantime. So, instead of a relaxing evening with the fam, we spent it apart for about 4 hours, picked up Burger King on my way back, took the kids for a quick 45 minute swim at 9:30 at night and then went to bed.....or so we thought! Lindsay decided to have a late night party in her pack-n-play and was up from 1am until 5 am. Fun Stuff! Oh well. Attending the picnic was worth it in every way and thankfully, we had an uneventful ride home that afternoon. Thanks Hearts of Hope for such a great day!


Cruz wanted a pumpkin with scary eyes, Cole, of course, a block M, and Lindsay's was a "pretty princess" says Cruz. ;-)



Cole "gutting" the pumpkin. (can you tell that he is in hunting mode now??) Cruz just wanted to watch. He said that it looked "distgustin" . ha ha


My brother's boys were here for a visit and this photo was after a visit to the pumpkin patch to play. Yummy.......cider and donuts always make you feel better......and before dinner to boot!


You can give me an "A" for effort. Attempting to get five children to look the same way at precisely the same time was virtually impossible but I think we did ok.


Lindsay two days after her scary airlift to the hospital. MUCH better as you can see!


This was Lindsay the morning after her helicopter ride to U of M. This is how we felt too!







Saturday, October 31, 2009

Much better this year!

Well, this time last year Lindsay was on a ventilator and trying to recover from a serious blood infection. This year..........she was home and in costume!!! God is so good! I do have to say that this may be the cutest little kitty in the land!
Again, I had tears after taking this. Each holiday and event will be that way from now on I think. We thank God every day that we get this chance with her. My Batman and PowerRanger were pretty darned handsome too!
I will post more photos tomorrow of our latest happenings and a very special photo of three very special transplant patients.........and all out of the hospital!!!!!
Heart Blessings~
Suzie

Friday, October 23, 2009

INDOOR FUNDRAISING SALE 10-31-09

JR went to the Dr. this week and has another 3 weeks off work. Ouch! We know that this isn't what they needed with Suzie not being able to work, but we feel that we can help them out, but we need your help.
We've decided to have an indoor "garage" sale Saturday, October 31st 9am-4pm at the Parchment United Methodist Church, 225 Glendale Blvd.
What can you do to help you might ask?
Clean out your garage or basement. We can use your donations which can be dropped off at the church on Friday, Oct. 30th 1:00pm - 3:00pm or 5:00pm - 8:00pm. Please have items garage sale priced to sell. All leftover items will be "paid forward" and donated to the Salvation Army.
If you have any questions or would like to volunteer to help, please call Linda at 269-547-9279.
Thank you all for everything you do to help the Dean's get through this.
The Lindsay Dean Heart Fund Committee

Monday, October 19, 2009

Poop and Discharge

Well, since I couldn't post yesterday, I will give you a little update. Yesterday was a little frustrating because we were told "no" again about going home because she was still pooping too much and not taking enough fluid in to maintain what was coming out. They wanted to hydrate her some more and see how she does and if her stools subside a little. If she tolerated a "bunch" more fluid, then we could leave tomorrow (which is today). So, we were bound a determined to make that happen and the princess succeeded!!! However, what started this whole thing was the concern of her higher than normal heart rate thinking that this was a little to do with her being dry. Well, after a fabulous day of drinking and lots of peeing, the heart rate didn't hardly budge and her rate awake and playing is still in the 150's. This should be around 120-130. (that seems to be her normal anyway) Things that make you go mmmmmmmm. All in all, she tolerated more fluid and they don't seem as concerned with her heart rate so..........we got to go home (hence the discharge title in case you were wondering what that meant!! ha ha ) YEAH!!!! Thanks for all of the prayers! They continue to work. God is good!
Love, Suzie

Saturday, October 17, 2009

Not today......

Well, the verdict is that we are not going home today. The question is now is if she is a little dry. JR and I are totally not going along with that idea because her eye lids are a little puffy which indicates to me that she may be the complete opposite. So, we are waiting to hear whether or not they will get some blood to determine exactly what she is. All of this concern is because her heart rate is still a little higher than it should be and we totally agree with that. I am just concerned that we will fluid over load if we just "assume" that she is dry and then we are dealing with chest tubes and lasix and I certainly DON'T want to go there! All in all, we are confident that the right decisions will be made but it just might not be in a very timely manner especially since it's on a weekend! grrrrrrr! So, it looks like another day of football and some cuddle time with the princess. Hopefully tomorrow will be the day......so we are told anyway. ;-)
Some other changes have been made which I am totally excited about! We can change her formula from 24cal Enfamil AR to Nutren Junior!!! This means no more blender for Suzie!! WOOHOOO!!!!! This comes already mixed and in a can! WOW! That means no more preparing for the next day, for daily outings, or for overnight stays somewhere and worrying if they have a blender or not! Again.....WOOHOOOO!!!!! This will free up some time. Can you tell that I'm geeked about this? ha ha The only downfall of this is that we need to pay attention to her weight gain. This is now 30 calories per once from 24 cal per ounce. She has already jumped from the 17th percentile to the 35th since August. We can't have a "chunky" heart baby on our hands. That could start a whole mess of other problems! Overall, I don't think we are too worried though because she is definitely starting to be the little mover and she will be burning more as she increases her activity. So, we are praying for her heart rate to lower a little (she is currently at 155 b/m and should be around 125 b/m) and for the docs to get her fluid levels where they should be. Thanks for the continued prayers!
Heart Blessings!
Suzie

Oh, and GO BLUE!!!!

Friday, October 16, 2009

Positives and Negatives

Positives are that Princess Lindsay is feeling MUCH better and has been playing with her favorite nurses and staff members all day. (with a few naps in between) She also has been given the ok for possible discharge tomorrow. We will cross our fingers but I see no reason not to at this point. The other positive was the she tested positive for c-diff again. Antibiotics are on board and healing has begun. Negatives are that she tested negative for influenza (thank god!!!) and for strep. Negative has been the result of every other blood test also!!!! YIPPEEE!
That's the update for now. Sorry this is super quick but I have eyes over my shoulder the end this because the computer lab is closing ;-)
More updates again soon!
Love, Suzie

Thursday, October 15, 2009

Drum Roll...........

The latest and hot off the press news from Meg is..............most likely NOT REJECTION!!!!!!!! JR told her he felt like running the halls after she told us that! Now that is impressive only one week post surgery people! I feel the same and also feel like we just dodged another HUGE bullet! PRAISE GOD!!!!!! We still don't know what she has but she has been put on a very broad antibiotic and it seems to be doing the trick. She just ate for me a few minutes ago and has been clapping and smiling a bit.......forced, but she is doing it. She is a little cranky (so not like the princess!) but who in the world wouldn't be when you are sick! Her fever has also broken! Whew! Her heart rate is still elevated a little but thinking that is due to just not feeling the greatest. Her heart rate never went below 200 in the ER and her fever was as high as 103 and never dipped below 101. YIKES! So, as a precautionary measure in case that she may have the flu and because Lindsay arrived here with a fever, anyone who enters the room MUST have a mask and for those who are going to have contact with her have to be gowned and gloved along with the mask. This is a great new measure that is called the pandemic precaution. It's a pain in the butt but good to know that people won't be walking around passing the germs! She was swabbed at Bronson for influenza and strep. The rapid strep test came back negative but the flu swab will take 24 hours so that means we should know results by early evening. Lindsay did have a pretty nasty stool this morning that they sent a sample down for testing for c-diff again. Most likely she will have it but the confusing part is that her symptoms from last time till now were definitely NOT the same. This time was scary and it had rejection written all over it in our books for sure. Obviously in the minds of the docs here at U of M too because they wouldn't have airlifted her here. All of the blood tests aren't back yet so we just sit and wait for results and maintain trying to keep Lindsay comfortable. Her fever finally broke so that is no longer an issue hopefully. Man, I am shaking while I type..........NOT REJECTION!!! WOOHOOOO!!!!!!!!!!!!
With Love from one happy momma and daddy!!! Keep praying!

no new news

Nothing new, just letting you know we haven't heard anything yet... She slept on her ride to Ann Arbor and they got her heart rate down from the 210's (I don't know to what, but down)... Keep praying and I will let you know when I hear. Heart Hugs, Steph for Suzie

Wednesday, October 14, 2009

Helicopters

So at Cole's football game on Saturday, a helicopter flew over and Suzie said "I still get chills every time I hear a helicopter." Knowing that she must have been thinking "is someone getting a transplant?" every time the chopper flew in or out, I now say a little thank you and prayer for who ever is on that helicopter... so tonight when I heard the helicopter 20 minutes after I talked to Suzie telling me that she was taking Lindsay in to the Emergency Room, I got chills and called Suzie making sure that it wasn't for Lindsay. And the answer was "No, that one wasn't for her, but her ride from Ann Arbor is coming." WHAT!!!!
Suzie brought Lindsay into the ER tonight with a fever (of 103), and because she was very tired and a couple other symptoms that are signs of rejection. They are worried she is rejecting her heart! So they are sending her to Ann Arbor to figure out what is going on. After Lindsay leaves by helicopter, Suzie and JR will drive over and be with her. They were doing flu swabs and strep swabs to see if she had either of these and blood tests, but the doctors in Ann Arbor wanted her where they could take care of her. Forgive me for not knowing more details... all I know is that we need to pray that she is not rejecting her transplant. Pray for Suzie and JR and their family. Pray for the doctors and nurses and helicopter pilot. PRAY!! ...thank you! love, Stephanie posting for Suzie

Monday, October 12, 2009

Things just hit me...........

Although things have been crazy around here, we sure have been making memories as a family. Even though we were supposed to be on vacation this week, we did enjoy being home together even though one of those days was a "surgery" day for one of us. ;-) Thursday was JR's surgery and as I posted earlier, everything went as planned and he is recovering very well. Friday and Saturday were rough ones but Sunday was like he did a 180. He was much better with his pain management and we were even able to go visit the local apple orchard and pumpkin patch this weekend. Lindsay saying "HI" from her crib.


JR being a trooper on his "crunches" (as Cole says) while the boys played.



This was one BIG rocking chair. Never really got a good shot because the wind was blowing so hard and the sun went behind a cloud and the kids were freezing and trying to stay warm. Ended up being much colder than anticipated. However, Lindsay is smiling behind that bink. ;-) Things like that just hit me.........


Speaking of that, when we all got out of the van to have our special family outing at the farm for the very first time as a family, we started walking to the entrance and I just started to cry. No warning, nothin'! I couldn't even speak I was so overwhelmed.....and all of a sudden! I couldn't help but to be overjoyed that we had Lindsay with us and we are blessed enough to get a chance at this experience with her. One that we started to love with Cole, then Cruz, and now finally, with her. Oh boy did that one "hit" me! JR was concentrating on walking with crutches on the gravel road and then noticed that I was wiping tears. Of course that follows with a "what's wrong". All I had to do was point to her and then to the pretty landscape in front of us with all the families enjoying the beautiful, yet windy, day and we actually get to do the same. AMEN!!




And so does this........





Now, this "hit" me too because when this accident happened, all I could think of was, #1 that he finally over did it and that pain that he always had in the knee finally made its appearance. Crazy as it may seem, that was a good thing and we can finally get it fixed! But then again, Great! (you guessed it.....a little sarcasm in that GREAT!) And #2, (although a little selfish) great, more pressure on me to do more around here. Just what I need! Well, that was the case for only about a day. We thank God everyday for our family and our wonderful friends that come to our rescue when we need them! Now I only hope that there comes a time that we can return that favor. ;-) As you may have guessed, the above photo is the "after" of Jr's leg/knee. (Along with the added color of betadine) He had 3 screws inserted and has incisions on both sides with a total of 29 staples! OUCH! Thank God for him that he was knocked out cold for the procedure. He has a post-op follow up appointment on the 21st and starting from that date, he can get started putting weight on it and working it back into normal working condition.






This just "hit" me when I captured this precious photo. I have to tell you that this hardly EVER happens! Lindsay likes to fall asleep generally in her own bed and for some reason that particular afternoon, she wanted to take a nap with her daddy. Like I said, precious!







I left this photo for last. Anyone guess what's new in this photo???


The princess is STANDING!!!!! She pulled herself up and everything! Now, if this doesn't "hit" you, I don't know what will! This time last year she was having so much trouble trying to survive. I remember the dreaded car ride home to tend to Cruz once Lindsay was stable enough to go home for a bit. JR and I had to have the discussion on where to lay her to rest. (yes, I'm crying as I type this!!) But, look at her now! God, family, friends, strangers, and miracles are what did it and we are so grateful. There were big alligator tears in my eyes when I took this photo. Oh, Lindsay! Mommy and Daddy are so proud of you!!!!! GOD IS GOOD!!!

Thursday, October 8, 2009

A Long Day!

Well, after a later than planned start time, Jr is resting comfortably in his room at the hospital and is on ALOT of pain meds. Doctor said that everything went as expected and was very happy with how it went despite the later start. JR said when he woke up from anesthesia, he was in so much pain that he thinks he saw God. :-) The plan is that if he can control his pain with pills, he can go home as soon as tomorrow. It will be totally a play it by ear kind of day. Thank you for all the prayers as once again, they were answered!
Now, nighty night for me ;-)

Quick update.....

JR's surgery is at 2pm this afternoon. Please pray that everything goes smoothly and that all doctors and medical staff are on their "A" game today. I will post more later and after I get my hubby all tucked in tonight at the hospital. He will stay one night for observation. Love to you all!
Suzie

Saturday, October 3, 2009

Dear God.........

What the????????????

By the sign of the above question, I think that sets the tone for what I'm about to tell you. As our good friend Elaine said, you just can't make this stuff up! On Wednesday afternoon, I stayed home as usual with the kids and got Cole off to school. While Cruz and Lindsay were sleeping, I was able to get some more time consuming things done in preparation for our vacation. Got all of Lindsay meds drawn up for the whole next week and packaged all kinds of snacks for the boys for the long car ride that we had ahead of us. Sounds hunky dory right? Wrong. JR had a softball game that night and at his first at bat, he hit a ground ball and when he landed on first base, he hyper-extended his leg. So much so that he heard something pop. Not good. So, he hobbled to the truck and headed home. Now, before he left for the game, I told him, "Be careful. We are leaving for vacation on Friday and I don't need a handicapped husband." I should have told myself to keep my trap shut! So, he got home and at first I was very angry. (that is putting it lightly!) But, the longer he was home, the worse his knee looked. So, I decided that he needed to go to the ER just to make sure that it wasn't broken. After an extremely quick admit to the ER, they did an x-ray and a CT and sure enough, it was broken. A tibial plateau fracture to be exact. Perfect! After we were told that, the next words were, "and you will need surgery to repair it." Even more perfect! UGH!!!!! (I have been saying that allot in the last few days!) So, after the doctor visit yesterday, JR has surgery on the 8th to repair and insert 3 screws into his knee/leg. So, that also means that we can't go on the much needed family vacation that we had planned to take. Again......Perfect! ;-( Now, my dad was watching all three kids while we were at the appointment and I called him to give instructions on how to get Cole to the bus for school. (he goes to Kindergarten in the afternoon) He said ok and not 2 minutes later he called back and said that Cole threw up and will obviously not be going to school. Well, crap! Cole did complain that morning that his throat hurt but after a glass of water, it didn't anymore. Cole sleeps with his mouth open and that complaint happens quite often. He also felt a little warm but he also sleeps under a ton of covers and was certainly comfy when I went to wake him yesterday morning. So, because of this, I called the pediatrician and they were able to get us in ASAP and luckily they always will from now on because of the princess. ;-) I wanted him checked for strep throat. Sure enough, after the nurse swabbed him, the doctor came in within 5 minutes and confirmed that he did indeed have strep. Perfect! I NEED A VACATION!!!!!!!!!!

On a better note, Happy Birthday to my brother! Dan, I hope your having a good day!

Friday, October 2, 2009

Home is where our hearts are!

Patti did it again! Enjoy the latest photos of the WHOLE family at home! A very Happy Birthday to my Dad and Grandpa today!!! Sharon Yoder, too! ;-)

http://www.pattisportraits.com/clients/index.php?do=photocart&viewGallery=1187

I will update all of our exciting happenings later on tonight if possible. You're gonna want to read this one! ;-)

Love to you all!
Suzie

Saturday, September 26, 2009

One Year Ago

Cole is 6!!!! He turned 6 on the 23rd and I cannot believe it! This time last year, we sent him on the vacation with the Winter's to Disney that the whole family was intended to go on. Disney will always be there.........HAPPY BIRTHDAY COLE!!!!!! We love you!
Cruz playing with his sister. Just before this photo was taken, he was lying on the floor with her, had the blanket covering them both and they were watching Sponge Bob together. Too stinkin' sweet.


"Really, I do like this new toy!"

Smiles at lunch time. Trying not to gag on my cereal and bananas!



Watching Maggie talk to her. She must have been interesting! ;-) So serious!


One year ago, JR and I took Lindsay in for her heart cath and never thought that that would be the start of this crazy adventure! Praying and thanking God for having her today. 293 days later, we were able to bring her back home and have begun to experience allot of "firsts" with the princess. We are so eternally grateful for this shot at life for her. She has grown physically and developmentally since we have had her home and feel completely blessed to be able to witness it. My heart has been heavy lately because I have been thinking allot about the donor family. We need to write "the letter" to them, but I have been waiting for the right time to do that. When will that be? During the holidays? I don't know. That would be incredibly tough for me to read if I were in their shoes and still grieving over the loss of a child. I can't even imagine what that is like yet, we were almost in that position. I still cannot believe what a miracle it is that she is here. Very surreal and I just don't know how to explain that feeling to you. Maybe someday I will have the perfect words for it but for now, we are soaking up every minute with her and the boys!

Lindsay has not made much progress with eating solid foods and maybe will need some more intense therapy on that, but for now she is getting PT and OT once a week here at home and really has done quite well considering. She has begun to sit up from a laying down position and sooooooo close to crawling. Our guess is that she is about 6-7 months behind other children her age. Maybe even a little more since she had her coding incident in June after the transplant. Man, can you imagine if she hadn't had that set back? She would be racing down the lawn with her brothers by now! Her eyes are getting better but we do know that she is definitely impaired in her right eye and it still is not centered as it should be. We are still waiting on an appointment with the U of M opthamologist that visits here in town to see what that next step will be. Lindsay is now up to 21 pounds and looking as chunky as ever! She is starting to metabolize better and thus her medications have been increased slightly. Mainly her tacro. (one of anti-rejection drugs) She has been put on a supplement of iron and continues to get blood draw once per week to check her levels. Those are getting easier but some are still a little tougher that others. All in all, we are on a steady track here at home!

Now, back to those "firsts" that I mentioned above. Of course you know about the first boat ride at the lake which was super exciting. Lindsay has also been to a restaurant for the first time now! Of course we were super cautious about her touching the table and we went on a Sunday when it wasn't crowed so it worked perfect. We are starting to get out more which is more "normal" and it feels great! She has been to her first U of M football game party (at the Winter's) and to watch Cole play flag football. Everyone was so excited to see her out and about and are just amazed that they are actually looking at her in person! Another one of her firsts that is up and coming is to see the ocean. Yes folks, the Dean's are going on vacation!!!!!! The whole family will be headed to South Carolina and will be enjoying time together playing in the sun, sand, and water. We will also be meeting with some VERY special people down there too! ;-) I think y'all can guess who that is!! I am so excited, I can't stand it! I get emotional thinking about it. All of us heart families have been through so much and when we get an opportunity to actually meet them face to face, well, I just can't express to you how much that means to me. Of course I will be updating while we are away, so don't worry ;-)

Thank you from the bottom of our hearts for all of your support throughout this adventure and we hope to continue to share with you all of Lindsay's progress. God Bless each and every one of you!

Heart Blessings and Love,

Suzie

Tuesday, September 15, 2009

Home.....

A preview of last nights photo shoot with Patti! More to come in a few weeks! YEAH! i could just cry.........SO HAPPY!!!!!!!

Tuesday, September 8, 2009

This and That........

This weekend was definitely fun-filled! JR and I went to the U of M game.....by ourselves might I add, and Sunday and Monday we had a mini vacation at the lake! The boys fished, we ate pizza on the boat (always a hit!) and got to spend quality time with the family. It was a picture perfect weekend to boot! Aunt Marva (Lindsay's great-grandma Lindsay's sister and my great aunt) was able to come out and I got this great picture of the two of them. So sweet. The weekend is not complete without fishin' pictures to show off! This was Cole's bass that he caught. It was only 13 1/2 inches so it wasn't a keeper but it sure made his day by catching it! We tried to put it in this bucket but the fish flew out. We then went to a cooler until we could measure it. ;-)

Now, this scene made me tear up. My baby in her first life jacket and getting ready to go on her first boat ride! WOOOOOHOOOOO!!!!! Thank you GOD! Not a peep came from her on the ride. I'm glad she liked it because there will be much more of that in her future! (mommy and daddy like it too!) And, no Meg, no swimming in the lake! ha ha



Cruz wanted a piece of the action too. This is the bass that he caught.....all by himself!!! It was funny because after the excitement of the catch, he casted again and after about 2 minutes, he said it was taking too long and left the pole right on the dock with the line still in the water! Comedian, this kid! Oh, and he kissed the fish before he let it go. Too cute!



This photo was on game day! Go BLUE!!!!!! (Love the bow blogger friend!)




Rubba Dub Dub. Three little monkeys in the tub! We have waited so long to get this picture. (Um, can you tell that Lindsay hasn't been sunbathing?? ha ha) Yeah, again, crying! We are just overflowing with joy, I can't even describe it! Life is good! (that nose crinkle is for you nurse Jen!)
One other thing I wanted to share with all of you that will probably set you back a little. Our sweet, sweet, almost six year old was talking about his birthday coming up at the end of this month. So, we got into the discussion of what he wanted to do for a party, if he even wanted one. This is how the conversation went......
Mom: " So, Cole. What would you like to do for your party?"
Cole: "Um, I want to have a car show for my birthday." (JR takes Cole to allot of car shows!)
Mom: "You do, huh?" (I'm thinking, now how in the heck can I pull that one off!!)
Cole: "Yeah, you know like some car shows get (he meant to say raise) money and then give it to people? I think we should do that and give the money to the heart babies. You know, like people did for Lindsay?"
Mom: " Oh, Cole! (crying of course!) I love you so much buddy!"
Well, needless to say, the kid "gets it". WOW! If anything, this whole experience has taught him that giving is a wonderful thing and that people really appreciate it, as we do today. To all of you, you had a hand in teaching Cole how to give. This is a lesson that will stick with him for a lifetime and we are so grateful for that. So, next year, mark your calendars that sometime in the fall, we will be doing a fundraiser for heart babies at Mott and the event will be a car show per Cole's request! I want it to be HUGE so committee, get your thinking caps on and as Ty Pennington says, "Let's do it!!!!"
OK, now that you have wiped the tears away, I have one last item for this post. I got "The bill" today...........
293 days room charge: $791,047.00
Pharmacy: $122,678.20
IV solutions: $53,390.20
IV Therapy: $190.00
Medical-surgical supplies: $467,056.00
Sterile supplies: $13,795.00
Take Home supplies: $26.96
Pace Maker: $2,246.00
Laboratory: $361,805.00
Pathology Laboratory: $313.00
Diagnostic x-ray: $21,462.00
Nuclear Medicine: $1,109.00
Cat Scan: $2,466.00
Operating/Treatment RM: $115,678.00
Anesthesia: $23,052.00
Blood Storage Processing: $16,823.00
Imaging Services: $506.00
Respiratory Services: $61,154.00
Physical Therapy: $9,690.00
Occupational therapy: $6,990.00
Pulmonary Function: $62,622.00
Cardiology: $83,835.00
MRI: $3,206.00
Recovery room: $919.00
EKG/EEG: $4,557.00
EEG: $5,775.00
Organ Acquisition: $80,000.00
GRAND TOTAL: $2,312,388.36
One happy baby at home in our arms, PRICELESS!!!! God is good!
Now, I thought long and hard about posting this and it is just on here to show what it took to keep our baby! In our eyes, no matter how crazy the cost may seem, the total number will never matter. Even if we had to pay this out of our own pocket (good luck with that by the way! ha ha), we wouldn't change a thing! No matter what we went through, what she went through, and how long it took, that number will never matter. We have our baby thanks to the medical staff, all of you, and God, WE HAVE OUR BABY!!!!!
That post tuckered me out! More photos to share soon and more of an update on the princess.
Heart Blessings~
Suzie

Monday, August 31, 2009

Lovin' Life!


AHHH. A beautiful day at the beach! Bill and Elaine Burdick graciously invited us out for the day and boy, am I sure glad we went! Yes my southern friends, THIS is Lake Michigan! Pretty nice huh? It was a lot to tow with one person for an outing, but I got some sun and even a swim in the pool! As I said above, Lovin' Life!

OK, this one is for you Kyle, and for my old twirling friends! Can you believe this shirt?!! ha ha Ashley found this for Lindsay before I even had her. Too perfect! (even though the "twirl" on the shirt probably wasn't intended for baton twirling,but it does to us!)
God is good! I miss you Tommy!



My precious baby's first time to the beach! Although she didn't touch the sand, (not yet anyway!) Lindsay enjoyed being out in the fresh air and listing to the sound of the waves crashing on the shore. Oh wait, that was me enjoying it! ha ha Can you tell that I needed this?!!


Cara gave Cole a little lesson in body surfing while we were in South Haven and after that, we couldn't get him out of the water!




Cruz wanted nothing to do with the water. He was entertained just playing in the sand. I LOVE this photo of him!





Now, this one I will cherish forever. At Cruz's birthday party, we were surprised with some visitors from Pensacola! My brother Dan, and my nephews, Braeden and Camden, flew up from the south to visit. This enabled us to get this great photo of all five grandchildren with great-grandma and grandpa!





Cole getting some playtime with his favorite sister!
I hope I haven't sent ya'll (getting ready for OUR trip south!! ha ha) into photo overload! Enjoy!
Love, Suzie