The right time....

Tomorrow will mark Jesse's 8th transplant anniversary. What an amazing happy day for him. I know he doesn't really get it today, but some day I know he will cherish this day as much as his dad and I do. It's a day to remember how fragile life can be, what a gift life really is, and a true reminder that strangers can be some of the biggest hero's in our lives. While it's a big deal, and a special day on our calendar, we don't really do anything to celebrate except talk about how great Jesse's life is thanks to his donor family.

8 years is a long time, can truly be considered a success story in the world of child transplants, especially for a bowel. We have been blessed with an almost perfect record of no rejection or organ related issues. I feel confident that he will use these precious gift for a good long time. I feel sure they will see him through driving a car, graduating from high school, college and even to his wedding. If well cared for, I don't believe his gifted liver or bowel will fail him ever.

Jesse's story is one of the few that turn out really happy, I'm afraid to say I know a whole lot more kids that it hasn't worked out for, that have never seen an 8 year anniversary. Our family knows first hand how tragic a chronic illness can be. Although I feel super positive about Jesse's future, it's never completely out of my mind that things could change for him at a moment's notice. That he is really never completely out of the woods. I guess that's no different than any other parent. I myself almost didn't see 18 years, and I was a completely healthy child. But still, as Jesse continues to grow, it makes me think.....

What is the right age to let him move into a more mature person... I realize the correct answer is "when he's ready".... but will I know that when I see it? I'm not sure.

Here are a few of the things I'm challenged with regarding timing...

• At what age does he get to stay home alone while I run to the store?
• Go on a date with my husband?
• At what age does he get to go alone to his friends house around the corner or to the park?
• When do I tell him to "be home before dark"?
• Walk the dog in our neighborhood where I can't see him?
• Stay in the car while I run in the bank?
• Let him ride in the front seat?
• Get a cell phone?
• How long should I keep his teeth? I have a bag full of little brown teeth... what do I do with that?
• Have the talk about where babies come from?
• Have the talk about Santa?
• Change his bedtime to 9:00?

These are just a few of the things that feel really scary to me, yet I'm not completely oblivious to the fact that they are all part of the "tween", becoming more self sufficient and mature stage of development. If someone could give me the Instruction Guide to Jesse's Development, I would be forever grateful... I would read it and re-read it. I know that other kids his age have already hit some of these milestones, so does that mean I'm not letting Jesse do things he should be doing? Am I too controlling? Probably, but is that really a bad thing? Thank goodness I don't need any answers today, I'm in no hurry... but for some things... Jesse sure is..

I would love to hear what some of you think?

For today and tomorrow, I'll just be thanking God for Jesse. For my big kids and their kids. It's an amazing feeling to be a parent and I truly appreciate the gift, no matter how it happened for me, or who gave them to me.. (because for me, there were many, many people involved in making me a parent, it's a miracle really... ;)

To our donor family... I'm sorry for your loss. I'm sorry I never had the opportunity to properly thank you. I'm sorry I never got to hear your story. I'm sorry you don't get to stress over these timing issues with your child, and I'm sorry your loss is my gain, it's not exactly natural and a hard reality for me to accept. But I am forever grateful for your gift, I never forget that you and your family are behind our health and happiness, and I will never let Jesse forget. Much love to you on this day, your hardest day each year. I'm praying for peace and comfort for you today.

To the rest of you... Thank you for your support and love through the years. I wouldn't be sitting here today considering Jesse in these ways without most all of you. You have all touched our lives in one way or another. I love you and appreciate you all!!

Happy Transplant Day Jesse!! Save a life like his.... Be an organ donor!!

A.

If it's not one thing... it's an allergy!!

Life has been rough in our home for some time. Jess has been feeling, well, poopy for lack of a better work. It started back in December with some belly aches after he eats, needing to lie down for a bit. If you know Jesse and his relationship with food, this shouldn't come as a surprise. He eats more than a grown man, eventually it should start to give him a belly ache.. So I didn't really think much of it..

But it continued and eventually started getting worse and I noticed it wasn't from over eating, he was hardly eating at all and now complaining even in between meals.. but still playing and enjoying life. I remember thinking that he didn't complain once when we were in SLC for Aaron's wedding so thankfully he must be over it... but actually he was just NOT complaining because he was too busy enjoying his time with Adrienne... As soon as we got on the plane he confessed he had been feeling bad.. hummm...

This sort of continued for the next few weeks, being sick when it was just us, but playing normal when he was with his friends or if we were doing something fun... I started getting really worried about our old "haunts" rejection, cancer... you know, little stuff like that that can sneak up on you slowly... so we began a process of elimination..

You will be happy to know he is completely cancer free and experiencing NO rejection!! Yay..

But, we did find he has much damage in his esophagus and stomach.. at first we though it was acid reflux and started him on medicine to treat this problem. By this point he as become much worse and was missing a lot of school and even sleep at night. I started wondering if he was depressed, faking, or just fooling around... again, it sort of came and went.. weird. After a month on meds he was still missing school and laying around on the couch most of the day... So I got desperate and scaled him back to the BRAT diet... You know the one... Banana's, rice, applesauce and toast. I knew this was a diet for nausea, but I didn't care, it was easy on the tummy and that's all I had room to care about. He won't eat toast, so basically it was a BRA diet.. After a week I could see an improvement... Yay!! My goal was to get his guts healed from all the irritation and damage. In theory, healing, along with meds should enable him to resume his normal diet. But, I kept having these nagging questions in the back of my mind... Why acid reflux? why now? What's causing it?

I began sneaking food back in and he began complaining again... After dragging him back to the doctor, we decided to do some blood allergy tests... They came back horribly positive... as in HE'S ALLERGIC TO FOOD!!! Panic set in, what if he's allergic to all foods?

Side Note: Remember how he developed a massive cancerous tumor in his belly because the anti-rejection medicine he takes to keep his body from rejecting his new organs sort of messed with his cell building process and caused something to go wacky? (which we know is how cancer is started.. cell's gone wacky..) Well, same concept.. same med, same malfunction of the cells. This time anti-bodies are produced against common foods causing allergies... ugh!!

Off to an allergist for skin testing.. which is a very long story all on it's own, but to give you the readers digest version, he has many food allergies. But is NOT allergic to food in general. Thank Goodness!! His list of no tolerance foods are as follows... No, beans, peanuts, green peas, wheat, soy, eggs, chicken, turkey, pork or tomatoes.. 11 item, but if you'll notice, they are items that are in almost EVERY food a kid likes to eat... and while I appreciate knowing NOT to feed him these foods, I'm positive there are still more.. we just haven't found them yet.. So, we are now gluten-free in our house. Which is the biggest change I guess. Soy and eggs are in almost all processed foods if you read the label. And of course eating out is off the table, fast food, pizza, spaghetti and worst of all sausage!! Our only saving grace here is that he can have cheese... and so I feed him a lot of cheese right now. He can have beef and fish as a protein and corn and rice as a grain... very limited options for providing dinner at the end of the day, not to mention breakfast and oh, yes... no school lunch either, so there is that little chore too..

Have you ever tried to buy foods that are free of everything?? They exists for sure, but I will have to sell Jesse just to pay for them.. ;-) I feel confused and frustrated. Since I've been trying to eliminate every food he's allergic to he's been feeling much better, which makes me so happy. But on the other hand, things have slipped through almost every other day and he's still had many bouts of feeling lousy.

We are feeling challenged right now, but I do see a light at the end of a very dark tunnel. I realize things could be worse than food allergies... but try to tell that to Jesse. He's definitely mourning some much loved comfort foods right now. Poor fella. I know this is just a learning curve for all of us and we work through this as we have all other obstacles, but it feels a bit overwhelming right now...

Please, don't send McDonalds... ;)

P.S. I have developed some very yummy cookies and brownies without wheat or eggs... now to find foods that are actually nutritious.. :-) A gals got to have priorities right??

Some recent pics...

These pics posted backwards and I'm struggling to get them in order so I gave up..

Our cute son Aaron was married!! He married Demitri on January 14th. We were able to be there and had a great time seeing everyone and sharing this day with our kids!! Congratulations to the happy couple!

Here are some cute pictures of our cute grandson Killian. It's amazing how fast they grow. He's wonderful and amazing. It's hard to put words to how much you can love someone you have only met twice! There is nothing like being a grandparent!

Jesse getting some special time with his Peeps!!

Jesse got some TaeKwonDo lessons for Christmas. He's LOVING them and looks so cute while practicing.. We'll see where this leads... HIYA!!!

Of course we celebrated Christmas too. It was a good year. Steve's family was able to visit from Utah and that was fun. Also Jesse was in a play at our church. He was amazing and so much fun to watch, he even had a small solo. I think it was his favorite part of this past season.
We gave a lot to help others this year, which has helped us enjoy the season in ways we have not experienced before. I have really come to love that part of Christmas. Thanks Markelle for inspiring us to do more with the time we have here!!

Jesse got to have a sleepover with his cute cousins right before Christmas.. We decorated cookies and drank hot chocolate. It was a super fun time for all the kids!!

This was Jesse's Christmas helping project. He did most of it himself and was very happy and proud to do it. Way to go Jess!!

I have not felt up to blogging recently.. Usually I'm all hot air and chatty... maybe I'll perk up in the new year!!

Happy 2011 everyone!! We love you and miss you all so much!

~a