Another Worm in the Bucket!

They told us that a transplant would come with its own bucket of worms and so far they sure have been right. We've had another added today. It is called Avascular Necrosis. It means that the head of Jared's femur bones are decaying and this causes major problems with the hips. I think that we have been very blessed to have found it already. We did a pelvic x-ray 10 days ago to check his bowels. Everything there looked fine but they discovered this new problem. I read up on it and it sounds like it does affect kids with chronic kidney disease more often because of all of the imbalances of the calcium, vitamin D and other minerals that come with poor kidney function. It sounds like it is often found after the disease has progressed quite far, so I am feeling grateful that we have found it now. I am thinking that we have had a little miracle of our own and that maybe this diarrhea thing needed to happen so that we could discover this new problem before it progressed too far. We have an appt. to see the orthopedic surgeon in a couple of weeks to see what needs to be done. It sounds like it will most likely require surgery. Jared has had such a difficult time learning to walk and has such poor balance and I am starting to wonder if this hip problem could be part of that. Poor Jared, it is just one thing after another in his short little life. He is one tough little cookie though and has a smile no matter what comes his way. It still amazes me how if one little thing in your body is not working right, how it affects so many other things. The human body is truly remarkable!

Kidney Disease/Transplant Funnies

Sometimes what seems like rare experiences for some are normal for those of us with sick kids. Here is our latest example.

Jared had a pretty good night last night. He stirred briefly at 6 AM and had a bout of diarrhea and then he slept for another 45 mins. At 7 AM as I was headed downstairs with him he started throwing up. It was a really good throw up. My shirt was soaked through, the rag that I had was soaked and there was still plenty on the floor to clean up. I quickly ran in and changed my shirt and then headed downstairs and got Jared cleaned up. This is a pretty normal routine around our house in the mornings and so it wasn't much of a big deal. When I got down stairs Jeff was there and this is the conversation that we then had....

Jeff: "Did Jared just throw up?"

Me: "Yes and it was a big one. My shirt was soaked through and there is still some on the floor to clean up."

Jeff: "Sorry."

Me: "I actually like the throw up from this new formula much better. It doesn't have curds and isn't as thick and smelly as the old one. It's just liquid and doesn't smell too bad."

Jeff: "That is a strange comment to make."

Me: "It is ?" Oh, I guess I just had to find the good in the experience. You know, glass half full."

Jeff: "It's still weird."

Only those who deal with vomit and poop on a constant, daily basis can truly appreciate the blessing of better vomit. This conversation kind of sums up my life. There are always good things to find and be grateful for, even if it is better throw-up! LOL!!!!!

Jared is feeling better!

Jared is feeling soooo much better! Yeah! He has been hilarious the past two days. He has been scooting around again and asking us to walk him around. He is making a lot of messes and generally has a smile on his face all of the time. Last week he was still really struggling and still having 8+ stinky diapers a day. We did more tests on Monday and everything came back normal which is good and bad. On Wednesday they decided to put him on a new kind of formula called Peptamin Jr. It is a formula that is already partly digested and so easier on the digestive system. It seems to be helping and I am keeping my fingers crossed that this will be the answer. Hopefully we'll be able to keep him healthy for awhile. It has been so nice to see him feeling better again.

I have decided that I am not going to ever take Jared into a public pool. He got so sick from just a normal stomach bug, I can't imagine how sick he would be if he got Cryto. So I told Jeff that we need to start saving every penny we can so that we can build a pool of our own so that Jared can swim. What a fun thing that would be. Jared might be 2o before we can get it but we are sure going to try!

Who Am I?

I sometimes feel like I don't know who I am anymore. I know that I am Jeff's wife and that I am the mother of Tyler, Alyssa, and Jared, but who else am I? I love being a wife and mother but ever since Jared was born (actually even when I was pregnant), my life has literally revolved around him. When you have a chronically sick child it seems to take over your life. I wouldn't trade not having him for anything, but sometimes I feel like I don't know how to talk about anything that doesn't have to do with kidneys, transplants, g-tubes, doctors appts., tests, lab results, etc. I have somehow lost myself along the way. I know that I have grown so much and have become a different person from going through these experiences but I know that there is more. When I do have a few moments to myself I don't really know what to do or what I would like to do (besides sleep lol). How do I find my individuality when the demands placed upon me have truly taken over? I love being a mom. That is all that I have ever wanted to be, but is there more?

My New Bike

I bought myself a bike last week. I haven't had one since Jeff and I got married. That's been almost 13 years! I absolutely LOVE it! I haven't found a bike trailer that I can afford yet so a neighbor let me borrow hers until I can get my own. I loaded up Jared in the trailer, Tyler hopped on his bike and off we went! It has been wonderful to feel the wind against my face as I race across the ground and it is something that Tyler and I can do together. On Saturday we road for almost two hours. I have been a little sore but it has been worth it. Hopefully we'll get Alyssa up and riding soon so that we can all go together.

Jeff and Alyssa returned home from their trip late Saturday night. They had a marvelous time! They didn't stop the entire time. They were in the park until it closed every night and they rode Splash Mountain six times (that was Alyssa's favorite)! She is turning into our little thrill seeker and rode on every roller coaster that she was tall enough to go on. Jeff is exhausted. He carried her on his shoulders the entire time! I reminded him that she can walk on her own, but he said that they were able to get from ride to ride so much more quickly that way. He tried so hard to make this an awesome trip and he succeeded. She will definitely never forget her Daddy Daughter Date to Disney Land!

A few pictures of the last few months.

Alyssa's choir concert. Boy can she play the air guitar!

Our Cabin at Camp Sunshine

Sunny, the Camp Sunshine Bear, with Alyssa, Jared and I.

Alyssa doing the camp sunshine dance.

Tyler, Alyssa, an old lady on the subway, My sister Erika and my nephew Benny.

We went to the Aquarium in Chicago on our trip. Jared LOVES fish. He could of sat there all day!

Cute Jared!

This is how Jared use to get around when he was fed continuously. We rigged up a box on wheels and an ace bandage around his waist and off he would go!

Sigh!

What do I write about? My life is plugging along at a relatively uneventful speed this week and I am feeling rather uninspired. I am so use to running around and trying to keep up with things that I don't really know what to do with myself when I am not running around. Oh, there are plenty of things that I could be doing. Laundry, cleaning, weeding, cooking, but I am truly unmotivated. Tyler has been extremely glum this week and so that always makes doing anything tricky. Jared is starting to do better and so I am not quite so stressed worrying about him.

Jeff and Alyssa are at Disneyland this week. Maybe that is why Tyler and I are so blue. They are at the happiest place on earth without us! Jeff has been dreaming for years of taking Alyssa to Disneyland for a once in a life time daddy daughter date. They are having a grand time and Alyssa is in the place that she loves most. I have been wishing that I could be a little fly on Jeff's shoulder so that I could see and hear everything. Alyssa definitely deserves this little alone time with her dad. She has been absolutely amazing handling everything as she is stuck between these two time consuming brothers of hers and I am glad that she is having some time by herself. I am sure that she will be giving us quite the run down of their adventures for quite some time. It will definitely be a trip that she will never forget. Sorry for this random post. I am tired and I guess a little blue myself. Life is definitely full of ups and downs and so we continue on.