Tiger Madness!

Man, this one turned out good! So exciting for both of them.

I just HAD to take this one! INTENSE!

Showin' off his dance moves during the 7th inning stretch.

That Tiger claw is as big as he is!

Photo op after the game.

Waiting for fireworks to start after the game. He is wearing down..........

Our grub! Ribs and potatoes which were picked out by Cole. ;-) The kid loves him some ribs! That's my boy!

And you HAVE to have hot dogs at a ballgame!

Calling Papa to tell him all about where he is sitting. So stinkin' cute i could cry!

Another good photo op and prior to him HAVING to have a Tigers t-shirt. ha ha

What an experience to share with a child. This was one that we will never forget!

Princess pictures

Well, miss Lindsay is turning into quite the chunky monkey these days with eating only by bottle! She has gained GOOD weight and she is up 1 1/2 pounds since we brought her home a week and a half ago. Last week was her first blood draw and for the most part, everything seems A-OK. Her tacro level and cellcept(rejection drugs) levels were a little low so Meg upped both of those a smidge and she also decreased her lasix from twice a day to once per day. So far so good and we go in again on Thursday for another blood draw. Crossing our fingers that those levels are good enough that we only have to do blood draws every two weeks instead of once per week. Her poor little veins have had it and it is making it very difficult to get a draw. She is doing so well and I think that we are still in shock that she is here with us! As you can see, she is still hammin' it up for the stalkers! ha ha Enjoy! Her specialty......giving kisses!

Everyone has to have their favorite little black dress..........I mean onsie ;-) (plus a little pink for good measure!)

Her meds every 9a and 9p with a few in the middle during the day.

Hey! It's Bam Bam! This one is for you Rebecca B.!

At the Tigers Game!!!

Well, needless to say that when we told Cole what we were doing tonight, he was overwhelmed with excitement! He was thrilled to say the least. We went and picked up the tickets tonight at the RMH and much to our surprise, they were tickets for a SUITE!!!!! So, needless to say, mom and dad are thrilled! ha ha We have it all to ourselves and all the food and drink to boot! Thank you Nate Robertson!!!! We are completely enjoying this experience with our son and we are so very grateful! Cole is so cute to watch. I will share pictures tomorrow. Now, back to the game............(and yes, there is a computer in the suite! SWEET!)

Fun Facts and Cool Happenings!

The fun fact is that when we left the hospital, it was Lindsay's 293rd day. I think it was time to go!!!!!! The cool happenings is that we have been given the opportunity to take Cole to his first MLB game today at Comerica park. The RMH was given box seats tickets to this weekends games against the White Sox (no more no-hitters please!!) and the manager called us to see if we wanted one of the days! Of course!!!!! So, JR, Cole, and myself are headed to Ann Arbor to first drop Lindsay off to one of her favorite nurses to babysit and then on to the game we go! I will have camera in tow to capture this exciting event for Cole.
Lindsay is doing fantastic! She one little hungry monkey lately and gaining weight as she should be with a new ticker! She has been feeding orally and we are using her g-tube mainly for meds. She was showing signs that she was uncomfortable at night with the continuous feeds so I have altered the volume that she gets with every feeding during the day so that she doesn't have to have those continuous feeds at night. Thank goodness because that was a pain! Especially when that darn connector would come out and then you have formula all over the floor and a nice puddle in her bed that she is laying in! grrrr. Although, she managed to sleep right through it! Speaking of sleeping, she has been a rock star at night. She has been sleeping the whole night! The nurses said that she did at the hospital but we were never there to witness it. It is fantastic let me tell ya! The first few nights were rough but now she is getting used to her new, PERMANENT, surroundings and adjusting just fine. I will post more later because I have to run!
Love to you all!
Suzie

Having fun at home!

Our Michigan Miracle!

Cruz thought he would try this bow on too. Don't tell Papa! ha ha

Breathtaking! In her own bed...........

Cole making Lindsay laugh......which brought tears to my eyes! Big shocker, I know! ha ha

Two peas in a pod my brother and I. ;-) Minus the nice sun tan.

All dressed up and I can't go anywhere! I just LOVE my outfit Sarah!

Sleeping Beauty.

From one Lindsey to another.......

Praying from Taiwan!!!!! Thanks Linds! Safe travels!

This is REALLY cool! Oh, Lindsay. You can touch people with your story from around the world! WE love you princess! (I will post more photos of her at home a little later today so stay tuned!)

What everyone has been waiting for!!!!!!

Pictures of the Princess at home!! Cole just can't get enough of her!

Yeah, that pretty much says it all!

Lindsay was so excited when her daddy put her in her saucer. It had been a long time since she played in this!

Just wonderful!

Lindsay looking out the window of the van on the way home. So incredibly sweet.

I do have to share a quick little story with all of you. We got a few phone calls today letting us know that Lindsay's homecoming was on the front page of the gazette. So, I went down to the store to get one and when JR showed it to Cole he said, "Hey! There is Blues Clues!" Those of you that actually have the paper will get a kick out of that one!

I will type more later because I have to go give all of her meds!!! WOO HOO!!! Can you believe that I am excited about that?!! There's no place like home!

Love to you all!

Suzie

Homecoming

For those of you that were not able to be there but were there in spirit.

http://www.mlive.com/news/kalamazoo/index.ssf/2009/07/shes_home_at_last_oneyearold_l.html

On their way home

They're on their way HOME!!!
They left the parking ramp of the hospital at 1:20pm. So those of you in the Parchment area, let's give them a welcome on Hamilton Street upon their arrival.

Saying goodbye is so hard to do

Our big girl!!!

Happy Daddy!

Lindsay didn't want Tommy to leave after his visit yesterday. Too stinkin' cute these two!

We are getting smiles!

Lindsay didn't want to say goodbye. Oh Jen, we are going to miss you soooooo much!

Isn't that a song? How do you say goodbye to the people that helped to save your baby? How do you say goodbye to the people that stayed past their shifts to make sure that your baby was ok and going to make it? Man, this is tough! We haven't been in tears yet, but when we were speaking to Lindsay's surgeon today, Dr. Devaney, I had to turn away a couple of times because I felt myself starting to fall apart. What do you do for the man whose hands helped to keep Lindsay alive until transplant? I'm sure all he has to know is that she is going home and feel good that his knowledge and skills helped to make that happen. Our hearts will also be forever grateful for all who were involved in Lindsay's care.

Lindsay has been INCREDIBLE these last couple days and even took a bottle today! She had about half of it and then she was tuckered out. But, she did it! We were told to start baby food, etc. right away and keep going on trying the bottles. Her focusing is improving slightly everyday and she is definitely getting her personality back! She is laughing and interacting so much more and getting stronger as well.

Tomorrow will be hard to leave, but at least we know that we will see everyone again in 1 month when we come back for clinic and we can share on all of her accomplishments. Here is a photo for you Jen. We love you so much!

I will share more photos and post again after we return home WITH OUR BABY!!!!!! God is so good!

Heart Blessings~

Suzie

Things are happening today!

Kyle, this one is for you! Learning how to stretch already!

This is how her physical therapy session ended today! ha ha She had had it!

Nurse Sarah, Mindy, and Megan. Lindsay is blowing kisses at the camera! Priceless photo for sure!

There are all sorts of things that are done before you get discharged from the hospital. Those things are for Lindsay: get NG out, start and regulate her bolus feeds, have another swallow study, get an echo and ekg, meet with the pharmacist to discuss meds and where we can have them filled as easily as possible, meet with the discharge coordinator to get info on in home nursing and physical therapy, ween off monitors and sat probe (mainly for the parents...), and get blood labs drawn to make sure all levels are still good before we go. Well, ever since Dr. G said that Thursday was the date, everyone has been in 4th gear and we have all but 3 of the above things done!!! We just have the echo and ekg, which will be on Thursday morning, meet with the discharge coordinator, and get her labs drawn, which will be done on Wednesday. Whew! Monitors are off and our baby is free of all tubes!!!!!! Except for the feedings but I don't think that tube really counts! ha ha Enjoy the photo of Lindsay and "her girls". She just adores them all!

What is missing??

Working on feeds.......

and then HOME on Thursday??!!!!! That is the plan anyway and we all know how that goes, so we continue to keep our fingers crossed. Today she starts her bolus feeds VERY slowly and move on from there. We are getting closer!!!!!!!!!!

She's Baaaaaack!!!!

Happy 13th month birthday princess!

Kissy Kissy!

Oh, Mom!!!!!!

"What? I'm not trying to take this bow off!! " This head band style will have to work for a while. The right side of her head was shaved because of the IV's!!!!! So, these will work in the meantime. ;-) Good thing they are cute!

Feedings are going great today and her incision site looks good as well. No leaks! Her echo from a few days ago was AWESOME!!!!!!! Dr. G said the muscle looked to be a little thick, but that was not shocking to him because he said that the donor was older than Lindsay and should be better as she grows. She is starting to play more and more and is definitely getting her personality back. She is starting to babble no-stop as she did before transplant! She is making everyone cry around here because of her improving so well. I have a feeling though that it is because they all know that she will be leaving very soon as well. Man, that will be a heart wrenching day but also a fantastic day all wrapped into one! Looking forward to it and not, if you know what I mean. So far so good here today!

Love,

Suzie

All is good!

Everything went well and Lindsay looks great! She is a little uncomfortable but that is being controlled with Tylenol. They decided not to start feeds until tomorrow because Lindsay is Lindsay and they want to be very careful! IV in the scalp is officially done and we had to replace it with one in the foot. This is for IV fluids until she can eat again. JR is headed home today to be able to attend PINKS ALL OUT in Martin tomorrow and then the Parchment car show on Sunday. I will head home on Sunday to do payroll and get the house ready for the princess' arrival! WOOHOO!!!!!!!!! Tears falling already.................

G-tube is in!

The update is that the surgery went well and we will speak to the docs in just a few minutes. Lindsay should be back in her room in about 30 minutes. Prayers are continuing to work!
Love, Suzie

G-tube tomorrow

Well, after deliberation, the decision has been made to put in a g-tube. This will be minus the nissan wrap right now, but we all know how things can change! We are ok with this decision and I think we all anticipate that she really won't need it for too long. Don't know what time the surgery is tomorrow, but I will post that when I know. We are waiting for an echo right now, surgery tomorrow, and then we will be working on her feeds and then then.....drum roll please............WE GO HOME!!!!! This will probably be early next week!
Talk soon~
Suzie

And the waiting continues

Well, we do have the results of the NMSES. Normal! So, we are waiting for everyone to read the scan that needs to and most importantly, the GI surgeon to read it and make a decision. So, I will update when we have the news. Lindsay has had a fabulous day and is taking another nap as I write this. Talk soon~
Suzie

Kindleberger Festival and Wine Tasting Party

This Saturday is the Kindleberger Festival in Parchment and we are going to give back to the community in the parade by throwing out "thank you" taffy to the community that has helped us so much this past year by supporting Lindsay and her family. Cole, Cruz, and cousin Zach will participate in the "thank you" taffy throw.

We will also be holding one of our famous bake sales in the park. If you would like to donate bakegoods, please call Steph at 269-352-8154 to set up drop off before, or just bring it to our booth which will be by the courtyard/ gazebo area in the park. We package the bakegoods in individual sizes and take donations instead of pricing.

WINE TASTING PARTY.....we still have tickets available for the wine tasting party on Sunday, July 12, 2009. This will take place at Don and Sue Lumbard's from 1pm-4pm. Tickets are $25.00 per person/$45.00 per couple....Beer will also be available for those non-wine drinkers.
Please contact Sue at lumbards@bronsonhg.org or 269-385-3667 for tickets.

Thanks for your continued support. Just like our little Princess Lindsay, we will not give up!
The Lindsay Dean Heart Fund Committee

Update.........

Lindsay is scheduled for , are you ready for this one, a Nuclear Medicine Gastric Emptying Scan. Basically to check and see how quickly her stomach is emptying out, I think. ;-) This should take place sometime before 1pm tomorrow. Until then~
Suzie

GI results

Well, the decision gets even tougher on the G-tube. The test results came back negative which means that there is no refluxing. hmmmmmm. Soooooo, sounds like they are all going to sleep on this and hopefully come up with a plan in the next few days. Hopefully sooner than later! Otherwise, Lindsay has had a SUPER day! She is starting to get back to her old self by shaking her head "no", sticking out her tongue, waving, rolling over in both directions, sitting up all by herself, and all in the last two days!!!! Ok, off to do laundry and get some dinner. Ta Ta for now.
Love, Suzie

The Love for Lindsay and our family is amazing!

Check it out!
http://babybeblesseddolls.com/category_11/Give-a-Blessing.htm

Thank you Baby Be Blessed for your generosity to our family!

Happy Camper!

Well, we might actually be camping next year at this time but for now, let's just use this saying. Lindsay has had a great day today and yesterday was just as great. She has been sitting up for a little while on her own these last couple of days and we have been getting LOTS of smiles. Her focusing is continuing to improve everyday and we even had her sitting in her bumbo chair as well. She has been doing great with switching her meds for IV to oral and today was the first day on oral Lasix and has been peeing like a champ! This was the one that we worried about and so far so good with the switch and the dose! Tomorrow with probably be the day of decisions around here. They have an upper GI scheduled for in the morning so that they can make their decision and then hash it out with us and the cardiologists. That could be interesting. I will update after we come to a conclusion tomorrow. Otherwise, we are getting there and hopefully by the end of next week, as I mentioned before, we can blow this pop-stand! I'm already getting emotional...............
We had a great visit with mom and Bill yesterday and watched fireworks on tv after they left. The boys are still up in Traverse City camping with my dad and Sue and having a blast. They have been fishing, making smores, hitting a carnival in town, and simply playing in the dirt as little boys do. So cute. I'm sure they will have stories for us when we see them next. ;-)
All for now....
Suzie

Frustrated!

Well, PICC line did not go in last night. They just couldn't find an access point, but I do have a question about that and will address it soon. I'm thinking that since since was NPO since 10am yesterday morning and didn't get down to the cath lab until 8pm, she may have been a little dehydrated and they couldn't find a good, puffy vein. I don't know, but the theory sounds good to me and I will ask! We are home for a few hours to do lawn work and for me to do payroll. We will be back with the princess tonight. No fireworks for us, just going to see our little firecracker instead!
Love, Suzie

Finally.....

she was taken down to the cath lab at 8pm. I think they are fitting EVERYONE in today so that they can have a nice long weekend! ;-) Now we continue to wait and pray that they are successful in finding a new access point for her PICC. I will update again probably in a few hours.
Suzie

A new day......new things happening

Last night was actually pretty great despite one of her new IV lines blowing and they had to replace it by finding a line in her scalp. Yes, Lindsay had her first haircut. :-( Not pretty either! Oh well, it won't last long and it's only hair. Ok, looks like the princess will indeed get a G-tube. We haven't had the official "yes" yet but all conversations with various departments of medicine indicates that that is what will be best for her. Even though after a swallow study etc, there is still a small chance of her aspirating again. Doctors don't even want a small chance. They want zero chance and I do have to agree that even though it is another surgery, JR and I tend to agree and then everyone can sleep a little easier at night knowing that that problem has been solved. Sooooooo, at 4pm today, she will be taken down to the cath lab for a new PICC line. Her blood labs have indicated that the infection is being taken care of and because of the high possibility that she will be having the G-tube surgery, she will need that line. It stinks, but this is just one more step in the direction of Kalamazoo!!!! We will probably hear about the G-tube surgery this evening and whether or not they can fit her in in the next couple of days. Darned weekend!!! ;-) Ok, I will update after her PICC line is in and if we hear any other news.
Love, Suzie