Sunday, April 26, 2009
Benson's prayer
Benson said the prayer in primary today for the first time. He was laying on his bed this morning, practicing by himself while Claire was getting a bath. He wanted to do it all by himself, of course. Here's what he said: "Heavenly Father, thank you for this day. Bless this food. Thankful that we can come to church today. Bless that we can go to church tomorrow. Bless that we can all be healthy. Bless that we can go with our teachers today. Bless....Pres. Monson. In the name of Jesus Christ, Amen." Amen.
Tuesday, April 21, 2009
Just like the day before
Sometimes it's okay for today to be just like yesterday. Not exactly the same. Every day is at least a little bit different with it's own surprises, treats, and challenges...but similar is okay.
When one day is not just like the last, that either means good news or bad. Take the good when it comes. Enjoy the difference. Wish your day was just like the last when it's the bad turn. But learn something, none the less.
Yesterday and today were unfortunately NOT just like the days before.
The very end of Claire's hemo catheter was cracked Monday morning when we took her in for dialysis. Not good. Not usable. Not fixable.
Claire was excited to go home early from the hospital after NO dialysis...but little did she know what would come just a few hours later during surgery.
It wasn't a fun surgery experience. Are they ever? She is way to smart, strong, and intuitive to let anyone fool her. She clung to us like a monkey as the 'people in the blue scrubs' take her vital signs. She knew something was coming and she knew she wasn't going to like it.
For the first time, we got to go with her into the surgery room and watch/help them give her the gas to put her to sleep for the surgery. I don't know if I'll do that again. She was screaming and fighting all of us to get away as the anesthetist held the mask to her face. It was not a fun sight to see your little one struggling and then softly go to sleep. At least she did get to sleep though it. Medicine miracle. They successfully took out the old catheter and placed a new one on the other side of her body.
Waking up for Claire was not a happy thing either. She woke up really fast from the anesthesia and just was not herself as she tried to figure out where she was and what just happened. She was in obvious pain. We got to hold her but she struggled to get out of the room and off to somewhere safe. Inconsolable. She finally settled down after we were able to take her for a walk and get away from the blue scrubs. Then she slept peacefully, safe in daddy's arms.
What a night. Too bad it wasn't just like the night before.
Today she had her dukes up. Very cautious about dialysis and those touching her (for good reason). When Dr. Ford came to look at her catheter she would have nothing to do with it. She cried so hard.....held her breath.....and fainted. She cried. Came back. I cried. She slept the remained of the time on dialysis.
Hopefully tomorrow will be just like LAST wednesday. Happier. Easier. Less Painful.
When one day is not just like the last, that either means good news or bad. Take the good when it comes. Enjoy the difference. Wish your day was just like the last when it's the bad turn. But learn something, none the less.
Yesterday and today were unfortunately NOT just like the days before.
The very end of Claire's hemo catheter was cracked Monday morning when we took her in for dialysis. Not good. Not usable. Not fixable.
Claire was excited to go home early from the hospital after NO dialysis...but little did she know what would come just a few hours later during surgery.
It wasn't a fun surgery experience. Are they ever? She is way to smart, strong, and intuitive to let anyone fool her. She clung to us like a monkey as the 'people in the blue scrubs' take her vital signs. She knew something was coming and she knew she wasn't going to like it.
For the first time, we got to go with her into the surgery room and watch/help them give her the gas to put her to sleep for the surgery. I don't know if I'll do that again. She was screaming and fighting all of us to get away as the anesthetist held the mask to her face. It was not a fun sight to see your little one struggling and then softly go to sleep. At least she did get to sleep though it. Medicine miracle. They successfully took out the old catheter and placed a new one on the other side of her body.
Waking up for Claire was not a happy thing either. She woke up really fast from the anesthesia and just was not herself as she tried to figure out where she was and what just happened. She was in obvious pain. We got to hold her but she struggled to get out of the room and off to somewhere safe. Inconsolable. She finally settled down after we were able to take her for a walk and get away from the blue scrubs. Then she slept peacefully, safe in daddy's arms.
What a night. Too bad it wasn't just like the night before.
Today she had her dukes up. Very cautious about dialysis and those touching her (for good reason). When Dr. Ford came to look at her catheter she would have nothing to do with it. She cried so hard.....held her breath.....and fainted. She cried. Came back. I cried. She slept the remained of the time on dialysis.
Hopefully tomorrow will be just like LAST wednesday. Happier. Easier. Less Painful.
Friday, April 17, 2009
Easter Fun
Easter was great! Grandma and Grandpa Hawks were out for the weekend and we had a great time. Claire LOVES eggs! "Nagg Nagg," she calls them! Benson was so excited for the Easter party at the hospital and for Grandma and Grandpa to come so we could have our own Easter party! Claire had yet another blood transfusion on the 10th that went really well.
Thursday, April 16, 2009
Surprise
We're moving.
I don't want to bore you with the details, but the past few weeks have been crazy. Lots of decisions, details to figure out, phone calls, and prayers.
Insurance is the main issue we have decided to sell our home. Fun thing is that we don't know where we're going to move yet. Depending on how insurance works out for the transplant, we will either move out to Minnesota asap, apply for state insurance out there and live there for a year or so until Claire is transplanted and stable. If insurance issues work out in our favor to stay here, we are sill going to sell our home and look for something cheaper in the Denver area.
Insurance is a head ache. Just praying to get accurate info from our company so we can know what percent of the transplant they will cover. If it is sufficient, we'll stay here. If it's 5%, as we've hear rumors, then we'll move to Minnesota!
As of today, our house is on the market and up for grabs! Any takers?!
I don't want to bore you with the details, but the past few weeks have been crazy. Lots of decisions, details to figure out, phone calls, and prayers.
Insurance is the main issue we have decided to sell our home. Fun thing is that we don't know where we're going to move yet. Depending on how insurance works out for the transplant, we will either move out to Minnesota asap, apply for state insurance out there and live there for a year or so until Claire is transplanted and stable. If insurance issues work out in our favor to stay here, we are sill going to sell our home and look for something cheaper in the Denver area.
Insurance is a head ache. Just praying to get accurate info from our company so we can know what percent of the transplant they will cover. If it is sufficient, we'll stay here. If it's 5%, as we've hear rumors, then we'll move to Minnesota!
As of today, our house is on the market and up for grabs! Any takers?!
Tuesday, April 7, 2009
Amazing Claire
A day does not go by when I don't recognize how well Claire was specifically prepared before she came to this earth for the trials she would face in this life. It truly is amazing to see.
A few words Claire knows. She knows what the words "you're connected" means. After hearing that, she looks down at her tubes, grabs a hold of them to see that they are connected to her, and drops them. She then knows her limits. She knows how far she can walk/move when she's connected, she knows NOT to play with them, and she knows she's stuck where she's at for a period of time. Not easy limits for a 19 month old, but she accepts them none the less. She also knows the words "blood pressure." Stopping in mid-play every 20 minutes she sits down, doesn't move her leg, and gets her blood pressure taken. "Let's give you some milk" is also another familiar phrase Claire knows. Not eating by mouth, we feed Claire through her stomach tube every 20-30 minutes. This is yet another time she knows it's time to sit/lay still while we give her the milk. Not to say that there aren't times I'm on my hands and knees, following her around the house with her milk tube, trying to get it to go down...but when it's time for business, she knows and complies. Amazing.
When it's time to change the dressing on her two catheter sites, she immediately gets serious and knows something important is happening. She stops playing and puts both her hands above her head so they won't get in the way. Sometimes it hurts her and is definitely uncomfortable for her when they pull the old one off, clean it, and put a new dressing on. She may cry and voice her dislike, but she doesn't move those arms, she doesn't try to squirm away. Sometimes with tears rolling down her face, she lets them do what they need to do and doesn't fight it. Amazing.
Cute thing about Claire...she has to start her night time dialysis by 6:45 pm so she can be done at 6:45 the next morning to head to the hospital for round 2 of dialysis...and after all the night-time rituals, she's still not always ready/tired for bed that early. But "connected" to her room/crib, we put her to bed regardless and what does she do? She doesn't cry or complain about being in bed so early. She sings! It is so cute to hear her cute little voice through the monitor and know she's content just chillin' until her eyelids finally close. Amazing.
She is extremely observant. Inquisitive. Curious. Patient. Mature beyond her age. Blessed. Amazing.
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