It's Party Time!!

First things first! Benson and Claire just celebrated their 3rd and 1st birthdays! What a fun week we had! Claire wasn't too sure about the whole cake idea. A combination of the fire on the candle and our singing Happy Birthday brought tears to the sweet girl's eyes! She got spoiled beyond compare with a new fall wardrobe! Benson had a Mickey Mouse birthday party with 6 of his friends...and couldn't have had more fun! We did a cake walk, scavenger hunt, pinata, presents, and of course, CAKE! Here's some pictures to show you what a great time we had!

Happy Birthday Princess

Happy first birthday Baby Claire!!! Yeah for the Princess Heart! I can hardly believe that Claire is already one year old. And what a year it has been! We have been so blessed to have her come to our family. The things we have learned as a result of her being born are priceless. Why? Because they are things of eternal birth. The trials we have had taught us patience, faith, reliance on the Lord, sacrifice, and love beyond what we thought we could experience. Those are the true treasures of life!

Saw a quote on my cousins blog the other day that really touched me. "It is no small thing when they who are so fresh from God love us." What an inspiring thought. Father in Heaven is sending us his love through our children. And the qualities we develop as a result of his love our ultimately what will allow us to return to him as one eternal unit.

What are year! Thanks Claire. Thanks heavenly father.

So how did the birthday girl celebrate? Well at the hospital, of course! And to top it all off, she even got a blood transfusion as the icing on her birthday cake! In spite of all of that, she had a wonderful birthday. She wasn't too certain about the whole "play in the cake idea." In fact, the fire on the birthday cupcake or our lovely happy birthday singing or a combination of the two - about brought this girl to tears! I think playing with the balloons was her favorite part of the day. Not much better than a crib full of fun balloons! She got spoiled beyond compare with a brand new line of dresses and clothes for the fall!  She is most certainly one of the nicest dressed 1-year old girls in town!  

Labs not Good - Adjustments

 Where is doing well. But unfortunately her labs don't reflect it. We took an oxalate two weeks after her being on hemodialysis and the level actually went up to 80! It was 76 before that! A surprise and disappointment to all of us. So we're going to make a few changes. We're going to start giving her medicine after her dialysis instead of before so that the meds we give her won't be dialyzed (taken) off by the dialysis and basically not do her any good. And then we are also going to add Saturday to her dialysis schedule so she's not going 2 days in a row without dialysis. So for now, will still have Thursdays and Sundays off! Today we also drew two more oxalate blood levels – one before dialysis so we can see where she's starting at and one after dialysis so we can see how much is coming after the session. We are hoping there's a big difference between the before and after levels!

We're getting ready to celebrate both hers and Benson's birthday next week! Claire is on the 8th and Benson is on the 14th. It will be fun, but a busy week! My mom is coming in for the week to help out and to help me throw a small Mickey Mouse party for Benson. Nothing big, just something to let him celebrate his special day! Benson is doing well so far with going to his friends houses while I am gone with Claire. He's been a trooper and it's really quite understanding of all that we have to do for Claire. His spirit was definitely specifically prepared to come to our family and deal with the challenges we face. He already knows something about sacrifice, patience, and love that I don't expect most toddlers understand yet. 

I am doing well. Still trying to sort out what I can get done when and where. It is a tricky balance we all face - getting stuff done and spending quality time with our kids. It all seems to work out somehow though! What really helps me get through all of this is remembering that this is just a season of my life. It won't last forever! (Although sometimes it seems like it may.)  It is just another chapter in the book. And I can and will enjoy this chapter! 

Back to the Hospital

Unfortunately we had a little sickness going around these past few weeks. Benson started out with it – a fever and a cough. The cough lingered for a bit, but he seemed to recover quickly. Thursday was Claire's day off from dialysis but unfortunately she didn't have a good day. She was starting to get what Benson had and just didn't feel well. On Friday during her dialysis she spiked a temperature to 38.5°C and that makes them suspect a possible infection in her hemodialysis catheter line.  It is routine that if they spiked a temp greater than 38.2, they draw a culture and start antibiotics in case she does have an infection in her line. 

Along with that routine procedure comes in overnight stay in the hospital. So back up on the eighth floor we went. Room 802-our six week home away from home-was taken so we got put in room 817!  Kree and Amie were our nurses and we got to see many other nurses there we had known before. It was kind of fun to see so many familiar friendly faces and get exceptional care by our good friends.  But still not that fun to be back in the hospital.  Being in the hospital it's just not on my top picks of places to stay overnight! Benson and Jared came out for dinner and we got to go on a little walk around the hospital. The worst part has got to be the lack of sleep we both get while we're there. It's just hard to get any good sleep with vitals every four hours and doctors and nurses walking in at random times just wanting to take a listen to her heart! OK I don't need to rant and rave too much, I'm just grateful it was just for one night! I don't know how I did it for six weeks before! I guess we were just blessed with what we need when we need it. Endurance! We got to come home Saturday afternoon and get a great nights rest that night! Claire is doing much better now and turns out she didn't have an infection in her line, just the fever Benson had passed on to her. That's a blessing. 

Sacrifice

It has been two weeks now since we began our new journey. I first have to comment on how mature my kids are. Little Benson, not even two years old yet, know something about sacrifice. He knows he has to sacrifice for his little sister. Today was the first day I actually had to drop him off at a friends house from 7 AM to 1 PM while I took Claire to the hospital. I bent down when we got to Lance Christensen's house and told him once again that I had to take Claire to the hospital to do her dialysis and he was going to play with Lance while I was gone.  I reassured him that I would be back to pick him up after Claire was done. Just about when he's eating lunch. And the look on his his face right then was one of sacrifice. Not that he was being punished by playing with Lance and having a great time at his house all day. But I assure you that given the two options, he would have chosen to stay in the comfort of his home and play with his mommy and baby Claire instead. He knew he had to do this for mommy and Claire. He didn't put up a fuss about it. He didn't even take a step back towards the car. He just said "OK mommy" and walked into Lance's house with a look of seriousness and courage.  What a sweet boy!

And sweet baby Claire-not even one year old yet. She knows a little something about sacrifice too. As one of her nurses has said, "she is so mature in the way she handles being on dialysis."  Although Claire can't talk yet, her face, her mood, and her expressions can say much more than any words. Now that she is familiar with the nurses who work on her, she is tolerant and even excepting of what they have to do to her. One part in particular where this is evident is when they have to change her dressing on her catheter site. She sits there, still as a rock, keeps her head straight forward, and looks at the nurse changing the dressing out of the corner of her eyes. She doesn't move a muscle. It doesn't feel good to have the bandages and tape removed from her skin. But she doesn't whimper, she doesn't wiggle. She lets them do what they need to do. She watches them every step of the way. She trust them. 

And in these small, simple examples, I suppose I can get a glimpse why Heavenly Father allows hard things to happen to good people.  We all have to learn to become like him.  We do that here in mortality through experiences that refine us and teach us a little something about, in this case, sacrifice!

Hemo Begins

Well things here have progressed to a new level. We started Claire on hemodialysis this week. Heavenly Father always knows best what we need and when we need it. And this is exactly it! Over the past few weeks, I have been able to connect with many families around the world whose children have the same disease and all of them have said, "you have to get your daughter on hemo! That's the only way to get her oxalate level low enough for her to remain safe!"  After hearing that from families who have been there, done that, Jared and I called our doctors and told them that we wanted to start Claire on hemo ASAP. What a great perspective change we got, from really dreading hemodialysis, to embracing it 100%! So last Wednesday, August 6, Claire went in for her fourth surgery and had her hemodialysis catheter placed. She will do dialysis at the Childrens Hospital on Monday Tuesday Wednesday and Friday for three hours each day. Then each night we will still do the home dialysis for 12 hours while she sleeps, along with the 2/day dialysis exchanges.  It is the ultimate dialysis plan, as our doctors like to call it! And so it is! It is definitely a challenge as I try to schedule everything as clockwork as it needs to be. But somehow we seem to fit it all in.

The biggest struggle I've had with all of this is what to do with Benson while Claire and I are gone 4 days a week 5 to 6 hours each day. Right now my sister is still staying with us so she has been able to stay home with him. I have been talking with friends in the ward and many of them are more than willing to watch him while we're gone. But I just feel bad leaving him! I know he'll be watched over and in someways it will make the time we do have together more meaningful. I'm sure it will all work out! 

And so our new normal begins. It seems we've had a lot of new normal this past year! We are excited Claire is on hemodialysis. It was a little bit of a rough start on Monday. Long story short, and lots of crazy explanations aside, she ended up needing a blood transfusion Tuesday and Wednesday because she didn't have enough blood in her to start out with. And then hemo pulls 10% of your total blood out at one time to clean it. So she needed more blood initially to be able to tolerate taking the blood out of her to clean. After figuring that out the hard way, we finally got her blood level built up enough so she is able to tolerate things much better now. We are also giving her EPO (a medicine to help her body produce more red blood cells) 3 times a week so she will hopefully be able to create enough blood herself so she won't have to be able to do that every time. I am confident the nurses will get all the kinks worked out and things will begin to run more smoothly in the coming weeks. Claire still has a hard time going to the hospital. Just the looks of seeing a stethoscope, scrubs, and tennis shoes brings tears to her eyes.  Poor little one. What a trooper! She has gotten more used to it though even in just the past three days we've gone.

New adventures. New challenges. New opportunities. Here we come!

Hemo-Dialysis Catheter

It came upon us quicker than we had expected. Mary, Claire's dialysis nurse, called Tuesday morning and said they would like to place her demo catheter tomorrow. So today was the day. Dr. Karr is the surgeon who placed her catheter. He is also the transplant surgeon and as Mary said, he is the best surgeon in the hospital and they would only use the best for Claire. She is still so little and they need to make sure they get a good line to work with. Or the whole hemo thing would just your nightmare.

The surgery was at 9:30 this morning. Claire was not happy at all at being at the hospital. She is all too familiar with the hospital and those funny looking people in scrubs and scary instruments that touch her body. All they have to do is walk in the room and she would just start screaming! Touch her, and the aggression just got worse. All she wanted to see was mom and dad! She didn't like wearing the hospital clothes they put her in and she especially wasn't happy when they had to take her for my arms back to surgery.

This was the hardest surgery for all of us simply because she was so much more aware of her surroundings. She knows that happy things don't happen when you're at the hospital. It was hard for me too, to see her crying like she was. She pushed away every hand that came near her just to prove to all of us who was really in charge! We never did get a blood pressure reading from her. She won that battle! Even during the recovery, in my arms, she didn't want anyone else in the room, looking at her, and even speaking sweet words to her. Except mom and dad. And all I can say is I don't blame her.

Claire is 10 months old, soon to be 11, and now has had four surgeries. She also now has three appendages to her body as well: the peritoneal dialysis catheter in her lower abdomen, the hemodialysis catheter by her upper chest, and her G-tube in the stomach. That's a lot to take in for a little one less than a year old! She's been through a lot and is an amazing trooper. She is a fighter.

We still don't have certain plans as far as what her hemoglobin schedule will be. We will give her until Monday to recover and then start up. Possibly could be up to five or six times a week. Potentially do peritoneal dialysis on the days she doesn't do hemo??  

I'm really grateful that I've been able to get in touch with the OHF, oxalosis and hyperoxaluria foundation. Through this network, I've been able to connect with other families around the world who are going through the same thing. I have found out that all of the patients who have PH1 (primary hyperoxaluria type one) are on hemodialysis. The peritoneal dialysis simply doesn't do enough to remove oxalate from the body. Hemo still doesn't get rid of all of it, but it does a much more efficient job than peritoneal dialysis. They are almost all on it either 5,6 or 7 days a week. So talking with these other families and finding out this information has made it a lot easier for me to accept and even embrace the idea of Claire doing dialysis at the hospital many days a week. Over the past week, Jared and I have become more anxious to get Claire going with hemo, so we are grateful we were able to get her catheter placed so quickly. And we are almost insisting to her doctors that we do dialysis a minimum of five times a week. We truly want to do whatever it takes to preserve the precious parts of Claire's little body. 

The Lord has blessed us with the sweet miracle girl. And what a sweet thing it is for me to remember that one day, Claire will be made whole and complete. And it won't be through tubes and machines, although we are ever so grateful to have those here in mortality. It will be through the great Physician, the Healer and Lord of us all. 

Claire is recovering well from surgery. I'm sure she felt a sigh of relief as she was finally safe in her car seat, and even safer as she saw the sweet face of her big brother back at home. OK maybe not toooooo safe as she looked into his eyes...she's always got to be on guard when he is around because he just loves her soooooo much and smothers her with that love! She went to sleep around 5 PM and hasn't woken up yet. It's 9:24 PM. She's had a long hard day and I expect she's out for the rest of the night.

What blessings we have received this day.