Normal Day-What it's like

Days get to be so normal and predictable for me that I forget that those normal days aren't going to last forever. So I thought I would write about what a normal day is like for us right now. Just so when it's over, I won't forget what used to be so normal about it.

I wake up, sometimes before Benson gets up and go downstairs and exercise. But since Hoff has been here, I haven't been doing that. So Benson usually comes into wake me up when Jared opens the garage door to leave for work around seven or 730. (oh but before that, Jared kisses me goodbye and asks me if I need the car today. If not he takes it to work.) Benson and I come down and eat breakfast, Cheerios for him, Life for me, and usually an egg. Then we usually go shower before Claire gets up, or if it's not a shower day, I usually clean up while Benson plays. I also get Claire's five medication's ready and her morning milk. 

Claire usually wakes up around 9 o'clock at which time Benson and I play in her room until she's done with her dialysis depending on how early we started at the night before. We have to get the 12 hours in. I take her blood pressure, heart rate, give her her meds (Benson helps me push them through her tube) and give her milk through the G-Tube.  When she's done with dialysis, I weigh her, wash her face (especially her left eye since she still has a plugged tear duct) and get her dressed.  Then I clean up all of her dialysis stuff and get the new set ready for the day. Then our morning officially begins as everyone is ready for the day. It's usually 10 o'clock by now we play, we clean, we do whatever we do, and then Claire takes a nap around 11. Benson and I play until dad comes home for lunch around noon.  

It's a great break up for my day to be able to have Jared home for lunch. It's fun to all be together. After lunch, around 1 o'clock when Claire is waking up, we do her first day exchange for dialysis. This consists of hooking her up through her peritoneal dialysis catheter, letting her drain whatever extra fluid was in her from the night before, and then filling her back up again with the peritoneal solution.  Then we are able to disconnect her and enjoy a few more hours of the day until the next exchange. It only takes 10 to 20 minutes to do each exchange. After her exchange, we usually run whatever errands we need to do for the day before we attempt to put Benson down for a nap around 2:30. He's almost to the point of not napping, but on the days he does, it's great! I give Claire her second helping of milk through her G-tube and we enjoy some one-on-one time while Benson is either napping or having quiet time.

We do Claire's second day exchange between 4 and 5 o'clock and then enjoy the evening with Jared since he's not in school for the summer. It's been nice to have him home. I'm going to be sad when he hast to go back to school in the fall. We all eat dinner together and Claire gets her third serving of milk. I also attempt to feed her baby food in the highchair while we all eat her dinner. She takes a few bites (probably just to make me feel good) and then just enjoys watching us eat.

I try to slow down with the household chores I've been working on through the day at night time and just let all of us enjoy being together. Sometimes we'll go on walks in the early evening before we start Claire up on dialysis for the night around 7:30. She gets her fourth serving of milk and her nightly meds then. We change her dressing on her catheter, do her blood pressure, heart rate, and weigh her again before starting up. Currently she's on it for 14 hours through the night. Benson comes into her room to get ready for bed, as she is really not ready to go to sleep by 7:30.  Like to stay in her room and keep her company and play with her as long as we can until she's ready for sleep.  Benson is great at entertaining her!

One of us puts Benson to bed while the other one stays with Claire and gets her ready. We try to have the deed done between eight and 8:30, so Jared and I can have some time to ourselves. We clean up dinner, work on the computer, and every now and then, get a scoop of chocolate ice cream and waste some time watching TV. I always feel guilty after that, because it really is a waste of time, but somehow the ice cream made it all worth it!!  Jared and I try to be up in our room by 10 o'clock. We start Claire's nightly milk feeding at 10 o'clock.  This is set on a pump that runs slowly all night long.  Then we have to set our alarm for 2 AM to put a fresh dose of milk in to finish the night off. She gets 9 ounces of milk through the night on a pump that runs for eight hours. Before bed, Jared and I read scriptures together, pray, brush our teeth, floss, and talk about the day.

In a nutshell, that's what our normal days have been looking like for the past few months. Always changes, excitement, and adventures to be had.  But for a typical schedule day, that's what it would be.

I have a feeling that this normal day we've been having lately will be changing real soon.

And the oxalate number is...

70.8.  The words that came to my mind are, "but if not." One thing I do know about Claire is that Heavenly Father is very aware of her. I have complete faith in that. He knows what her needs are and what the needs of our family are. If it is not his well to have her oxalate at a level where we can keep doing dialysis at home, then I will obey. We will do whatever it takes to keep our baby girl safe. If that means going to the hospital three times a week for dialysis then I will do it gratefully. We will see what the doctors have to say next week and go from there.  

We just got back from our Waite family reunion in Zion National Park. Grandma Waite provided everything for each of her descendants: food lodging and a fabulous time!! We hadn't seen many of our family members for over a year, so it was great to be able to be with them and renew those relationships. What a sweet, loving Grandma we have! You know, whenever I am tempted to compromise some thing, just a little things, or not complete some thing as fully as I am able to, I just asked myself if that is what grandma Waite would do.  Undoubtedly, the answer is no. And I go and do the thing right away and at the right time and in the way I know Grandma Waite would do them. She is such a great example to me of diligence, love, hard work, and as close to perfection as I know! I love her and I'm grateful to be named after her. How blessed I am to be her granddaughter. I love spending time with her this past weekend!

Hoff (Aleena) came home with us after we spent some time in St. George with Dad and Diana. She needed a change up from her normal life in Ogden and I always love the company and help that anyone is willing to offer! Hoff is always such a joy to have around. I hope I will have the eyes to see her sweet Christlike example as we spend time together the next few weeks.

Final Chance

I took Claire into the Kidney center today and it was a great visit. Long…from 1:00- 4:30...but good. Mary, Claire's nurse, taught me how to do the daytime exchanges that we will need to do twice a day from now on. The plan is to do 12 hours of nighttime peritoneal dialysis, from 8:00 am till 8:00 pm. Then do a peritoneal dialysis exchange during the day at noon and another one at 4:00 pm. The exchanges are simply a mini dialysis where I hook Claire up to the dialysis machine and it fills her peritoneum up with a sugar solution. An exchange is made where toxins are taken out and replaced with this solution.  Then I am able to disconnect her and do whatever, wherever. Four hours later I hook her up again and drain it out and fill her up again. Then I am able to unhook her until the nighttime dialysis begins at 8:00. Before her nighttime treatment, it will drain her again and then start the normal 12 hour dialysis. The theory is that the more times she is on dialysis, the more oxalate that will be removed from her body. So in every way, we are optimizing her dialysis... With the fill volume, the last fill volume, and the overall dialysis time. Through faith, fasting, and prayers, Claire's oxalate level will lower, if it be God's will for Claire and our family.

JoAnn's Compliment

Today we went to Joann's craft store to buy some materials to make Claire and Benson a special memory board. While at the store, there was a lady whom I have chosen to call Joann since I don't know her real name who was particularly interested in our children. She was at the counter when we were getting our fabric cut and was smiling at Benson and Claire. Joann said, "What beautiful children you have!  She is just beautiful and he is so precious."  We thanked her and she just kept admiring and smiling at both the kids. It just so happened that when we were done with our shopping, she was behind us in line to purchase our things. She was smiling and talking with Jared as he was holding Claire and she said, "You two are truly lucky… Or should I stay blessed. You are very blessed to have these children. They are very beautiful… There's just something special about them. They are perfect."  Joann just smiled at our little ones. Little did she know how special our little children truly are!  Joann reminded me that it's not just Jared and I and close family who see something special in our little ones. Others can see it too. There is truly something special about our two beautiful children and anyone who knows Claire and Benson is blessed to be a part of it.

Eye Doctor - Round 2

Well, I took Claire to the retina specialist at the University of Colorado eye center. Dr. Mandeva was a specialist that looked at Claire and the news he had to give us similar to that of Dr. Curtis from the Childrens Hospital. He definitely saw crystals in the back of Claire's eyes on the retina. He was very caring and concerned about Claire's condition. It's so hard to tell in a baby how well she can really see, but he believes she already has significant vision loss. He said if he was looking into Claire's eyes and she could tell him how well she could see, she would probably say she could see about 8 feet in front of her and could possibly read with magnification. Now that was just his guess and who really knows if Claire can see much better or much worse than that currently. Now just because he says that doesn't mean I agree. I honestly don't have any concerns with Claire's vision right now. She seems to see very very well. She can see a cheerio on the ground and also seems to see quite good distance as well. I pray that heavenly father will protect and pick preserve Claire's vision. Dr. Mandeva also said that over time, her vision will only get worse, so as long as the oxalate stays in her body. And right now, the dialysis and the B6 vitamin are the only things that will get the oxalate out, other than a transplant. We will increase Claire's peritoneal dialysis to 14 hours at night and also do some daytime dialysis exchanges to ensure we are doing all we can to preserve Claire's health. Miracle girl…perfect eyes!  

Nursing

 Sweet Claire is 9 1/2 months old and she has decided she has done nursing. Rebecca Allen and her two boys were here to visit two weeks ago and although we had a great time, they brought with them colds. The day they left, both Benson and Claire got a cold and that's what triggered this whole thing. Claire didn't nurse very well that week that she had a cold and now that she's over it, I guess she just decided she's OK with keeping it that way. I'm really fine with that, but I just want to make sure she still gets food through her mouth some how, and not only through her tube. Her G-tube is super convenient, but she is not going to be a strictly to bed baby. She needs to know that nourishment comes to the mouth! And the whole problem with that is that she doesn't take a bottle. So we've been working with her on a sippy cup these past few weeks and she'll take about an ounce through that. She's also liking to drink from a regular cup and will take about an ounce through that too. Definitely more work than nursing is, but worth the work in the long run. I have to realize that she is an individual too with likes and preferences. I need to follow her cues just as I hope she'll learn to follow mine! Here we go through just another one of the many transitions in the life of my sweet little baby girl! 

12 lbs. 8 oz. 9 1/2 months old.

Eye Doctor

I took Claire in to see Dr. Curtis at the Childrens Hospital I clinic and didn't get the greatest news. After we got Claire's eyes dilated, he came in and was looking at her eyes through those funny looking glasses and lenses they use. He then began saying things like "ooooohhhh, wow, oh yeah there's definitely crystals in there, wow, that's unusual, let me go get another doctor and have him take a look at this."  Not the most comforting thing a mother wants to hear as the doctor looks into the eyes of her beautiful nine month old. Nonetheless it is what it is. And I'd rather know about it now and then have it be a surprise when we didn't know about it and she ends up with vision loss. As far as we can all tell, right now Claire sees very well. I have no concerns about her current vision. However the doctor is simply concerned that overtime she may develop some severe vision loss if those Crystal stay in her eyes.

We don't know a whole lot more right now. I'm taking Claire to a retina specialist at the University of Colorado on Monday the 30th to see what his opinion is. We will see if there's any testing or treatment that can be done until the kidney doctors feel Claire is big enough for a transplant. Ultimately, the kidney liver transplant is the only thing that will 100% care of the oxalate problem in her eyes, and the eye doctors opinion was to not delay the transplant at all. But Claire is still just over 12 pounds and needs to get bigger for her to have room to put the organs inside her.

We haven't got the kidney doctor's take on all of this eye stuff yet, but we'll be going back there the second week in July. But will they know what's best either? Oh I hope I can be blessed with mothers intuition to know what is best for my sweet little one!

Every night as I hold Claire before I put her in her crib I talk to her body. I thank her body for getting the oxalate out and for not causing any harm to her eyes. She will see well. She will. I thank her body for growing so big healthy and strong. I thank her body for having the dialysis work so efficiently and cleansing her body. Thank you.