Claire Update

Our dialysis nurse called yesterday and they had some great news for us. Claire's oxalate has remained below the 70 level. It is at 67 and a month ago, it was at 65. So virtually the same. We are all very excited about that and know the prayers of many (more than we are even aware of) are being answered. Thank you for everyone for your continued prayers for a baby girl!

They are going to be doing some precautionary tests on Claire within the next few weeks. Because of her need for the B6 vitamin, Claire is at risk for peripheral neuropathy. That means some kind of weakness in certain parts of your body, having to do with the nerves. It's hard to see any signs of it now, as she is still so young; but they do want to stay on top of things and ensure they are working on the offense instead of the defense. We will also be doing another echo on her heart to make sure oxalate isn't getting into other organs (her heart) in her body.  I am so grateful for the medical care we are able to have. What a blessing it is to live in this country where these things are readily accessible and available to us.

Still no word on the genetic studies. Dr. Ford was going to call the Mayo Clinic to see if he can find out what is going on with those studies that were sent back in the end of January. That will hopefully help us know what the next step needs to be with Benson.

Claire is now starting to be able to sit up by herself! She is also began to eat some baby food. She is not as accepting of the food as Benson was, but hopefully with more exposure, she'll start chowing it down!

The Terrific Two's

Yesterday was one of the classic two year old days, at least as far as nap time went. Benson went down for his nap a little better than usual, not putting up much of a fuss at all. I didn't hear anything from his room for the first 45 minutes of his nap and thought yay he went down just great and is sleeping like a champ! Little did I know what was going on behind a closed door. Then the doorbell rang-it was the UPS man-and after that I heard some noise coming from upstairs. Great he's not asleep like I thought. Or he was asleep and the doorbell woke him up. A few minutes later I decided to go and see if I could figure out what was going on. As I walked around the corner, he was looking out the door and quickly shut the door as he saw me approach. I quietly went in and to my surprise, saw baby wipes all over the room. Then I noticed there was a white paste on some of the wipes. Upon further examination, I recognized the paste a diaper rash cream. Then it all started coming together. His Mickey Mouse stuffed animal was covered in diaper cream with a diaper that he was obviously trying to put on too! Not only Mickey but Mr. bear and the majority of his bedspread and sheets were spotted with cream!

Wait, it gets better.

I haven't said a word yet as I begin to take out the sheets. I put the sheets, stuffed animals, and other tainted items in the hallway and got another blanket and pillow for Benson. I said "night night" and left.

So I started the laundry and didn't expect him to go to sleep. Another 30 minutes went by and I suddenly heard his heard his door open and close real fast. As I walked upstairs, I thought I smelled something unusual. Outside of his room, I saw the extra blanket and pillow I had given him. I opened his door and saw him sitting on his bed with a bottle of hand sanitizer in his lap. There was hand sanitizer everywhere! I first smelled his mouse to make sure he hadn't eaten any. He hadn't put any in his mouth, but it was just about everywhere else.  Blanket and pillow outside of his room were covered in sanitizer and it was all over his mattress pad and rug.

Oh, the joys of toddler hood. I suppose this is a say not uncommon to almost every parent of a two year old. What a boring (and much cleaner life) we would have without these inquisitive, "I can do everything by myself" little-guys!

Relax

Today I got my first facial! It felt so good! I was surprised how relaxing it was to just let someone else pamper me. I'll definitely have to do it more often!

Benson is staying with Jared's parents in Idaho for the week. It is a very strange feeling to have him gone and you have such a quiet house. It made me realize how easy taking care of a baby is compared with taking care of a two year old! Although I miss Benson and will be grateful to have his sweet smiling face and burst of energy back in our home, it has been a nice break for me. I've been able to catch up on a lot of things around the house that keeps getting put off. It has also been nice to spend a little more one-on-one time with Claire and give her a little more special attention.  Children are a blessing, but it's been nice to take a small break! Quiet but nice!

Miracles

Yes, miracles really do occur. Last Tuesday, we heard from a nurse, Mary, that Claire's latest oxalate count was down to 65! The gold his whole time has been to get it below 70. If it was not able to get below 70, we are going to have to possibly start Claire on hemodialysis. This would not be something preferable for Claire because of her size. Also, it would be fine for me to take Claire to the hospital is three times a week for hours at a time. But I don't know what we would have done with Benson during that time if it had to occur. But, the main point is, that it is truly a miracle that her oxalate has dropped so significantly. When we took her to the hospital at two months of age her oxalate was at 156. The normal level in you and I is below two. The leading professionals in this field say that Claire's oxalate needs to get below 70 in order for it to be safe for other organs in her body. And we would have to take whatever measures necessary to get it to that safe level. First, peritoneal dialysis, then chemo, and then a liver transplant if necessary. How blessed we are that we only had to take the first step. Claire will still have to have a liver transplant, but at least we will be able to put it off until she gets older and bigger. On top of all of it, we had to cut the vitamin that gets oxalate out of her body in half because she was getting too much of it in her and it could cause negative sensory side effects if there's too much of it. Also, only a small percentage, less than half, of the people who even take this vitamin even respond to it in a way that removes oxalate from their bodies. So against all odds, Claire has been blessed not by accident or coincidence but by miracles!!

Service

I have to just write a quick note about the amazing example I received from my friends about service. Since Claire's difficulties began, we have had dinner brought to our house every week. While in the hospital, we had dinner every night. Since we've been home, I have told the sisters in relief society that I don't need anymore brought over. But there have been a couple of friends who insist on bringing dinners every week. Carey Dennis and Brenda McLeish have been such a great example of service to me. They say they know they don't have to do it anymore, but just want to help out and lighten her burden in anyway they can. Although I almost insist they don't bring any more over (simply because I don't want to burden them) they still continue to do so even two months after we've been home. And I just have to say how appreciative I am of it. What a blessing a simple things such as a dinner can be. My days are so busy with taking care of Claire's needs. It has been such a great burden lifted for me to know that there are at least two days (plus leftover days) that I don't have to worry about fixing dinner!

I have learned a lot from their active service and hope to give back to others as they have so greatly given to me. This since I will stay with me for the rest of my life and has change the way I look at service. Do it because you want to, not because you have to.  Do it when others insist you don't need to. Because they probably still need it. Do it out of love.

Walk

 Today was the first day of the year that I've been able to go out for a walk! It was one of the best things I could've done for myself. Benson and Clarah came along in our new double stroller and I think they both loved it as much as I did! It was so refreshing to breathe the fresh air and move my legs. Benson was also able to play on the swing inside and had the time of his life! Claire enjoyed watching him go up and down here and there. It was a great way to spend the hour.

Online Journal

Family Update

I am very excited to have this new online journal.  I feel I will be much more apt to write as I am more frequently at the computer than I am sitting at a desk with the paper and pen. Even if it's just for a few quick sentences I am making it a goal to write in my journal every day. I hope to build character in accomplishing this goal.

Character--doing what you say you're going to do! 

This has been a great year so far I can't believe how blessed I am to have two beautiful children and a wonderful loving companion.

We have been through a lot since November 14 when we found out our sweet little Claire had a kidney failure. I took Claire in for a two month check up and everything looks just great. Except that she had a game as much weight as I would've expected. She only weighed 6 lbs. 13 oz. at two months old. So, just as a precaution, the doctor ordered some bloodwork to be done. The next afternoon we were called and told to go to the hospital immediately. After six weeks in the hospital, three blood transfusions, two surgeries, and a lot of unanswered questions, we finally found she had a rare genetic disorder (1/1,000,000).  This disorder begins in the liver – which is not producing a certain enzyme to get rid of oxalate. This oxalate then "spilled over "into the kidneys and crystallize them… Leaving her kidneys with less than 10% functioning. Eventually, the curable result in a combined kidney and liver transplant. Until that time, she is on peritoneal dialysis that we are able to perform here at home. She goes on dialysis for 10 hours each night and her system gets cleaned out from the waist the kidneys aren't filtering. It is a beautiful marvelous invention of technology that we are extremely grateful for. Without it, our little one wouldn't be here today. How grateful we are for our pediatricians insight to Claire's situation.

We also just found out about a month ago that little Benson boy most likely has the same genetic disorder. He hasn't progressed to the same level Claire is at. Claire may actually be the youngest child ever to be at this stage at two months of age. It is more common to show up closer to 2 to 4 years of age. Benson's kidneys are still functioning almost normal. We are hoping will be able to salvage the kidneys and just do a liver transplant, since that is where the real problem lies. We are still waiting for some genetic studies to get back to decide where to go from here for both of our kids.

This year does put a different perspective about having a large family Jared and I had planned on. We haven't made any decisions about future children yet. We're just taking one day at a time and so grateful for the beautiful children we have now. It's supposed to be one out of four chance that your child will have the disease, but we're already two for two!

One thing I am struggling with as we are trying to get into a "new normal "lifestyle, is taking time for myself each day. I do believe this journal will help me in this area. I need time to relax, I think, meditate, and put my thoughts to paper.  Journal keeping can be very therapeutic and I look forward to the time for me it will provide.