Another Tuesday, another blood draw. And today, 38 days after we first walked into the ER with our very ill baby, we got the news we have been praying for. Claire's numbers are continuing to climb. Transfused blood doesn't work like that, which means she is producing blood on her own at a normal and healthy rate! We will likely never know the cause of her illness... it was probably a virus that came and lingered longer than usual. Regardless, today she is healthy. Her hemoglobin was up to 11.3 and her retic count was 2.0. We hope that her hemoglobin gets a little higher, but after seeing it as low as one, 11 is a number to celebrate.
Today Dr. Recht told us we were done. Actually, we will now check in with our pediatrician, and likely go back to Doernbecher for one more draw in about a month. But, as far as he is concerned, she is cured. Even though we have been waiting for this, and knew it was coming, it sort of took me off guard. In some ways I am not quite ready for this chapter of our lives to be done. We have grown a lot, learned a lot, and prayed a lot. I am so thankful for our daughter's health, but I am also thankful for this experience. It has changed us.
We did have a few minutes to spend with the doctor and were able to ask a few questions, hear his take on this process, figure out why they did certain tests and why, for three days, we thought Claire had cancer. He thanked us for our patience (and for contributing to his daughter's college fund). We thanked him for going through medical school and taking such good care of our baby. Throughout this experience both Merrick and I have commented on how thankful we are that Dr. Recht was the one we were put with. He was on rotation the morning we were in the PICU, and he stuck with us. He has been nothing but calm, patient, caring and reassuring throughout. He has always been very confident, but has never come across as cocky. I hope we don't need to recommend him to anyone, but if you do need a pediatric hematologist, I would highly recommend him to you. He is a fantastic doctor.
I feel like there is much more to write about this whole thing. In fact, I think I have four or five unfinished blog posts trying to write out and process my emotional roller coaster. I am sure I will get back to them at some point, but for now, we want to thank you all again for your constant prayers and encouragement. Our family and friends have been nothing but a blessing to us... thank you.
Tuesday, January 25, 2011
Wednesday, January 19, 2011
Egg-okay...
After holding off for a few months, we decided to let Claire try eggs. We were a little gun-shy after our experience with Grace, and we wanted to make sure she was healthy first, but she did great... no allergy to eggs for this baby!
Tuesday, January 18, 2011
Blood loss...
Tuesday is blood draw day. Our weekly Doernbecher trip. In some ways these are getting easier. It seems as though Claire is getting less worried about the actual blood draw. She cried a little, but it was as they were holding and cleaning her arm. I don't think she really feels the needle going in. Earlier this week my mom loaded us up with "suck food." (Here's my plug... If you have kids, and haven't tried these, you really should. Suck food - foil pouches with a built in straw that contain various pureed fruits and veggies. They are the consistency of baby food or melted smoothie. You can buy them pretty much anywhere. They are also called fruit sauce squeezes, crushers, etc.) Anyway, the suck food seemed to distract Claire better than the lollipop we had tried before. Thanks mom!
Just a little bit sad, but she calmed down quickly. The lady in blue is great - she never misses Claire's vein. The other lady is the "holder" and the one Claire stares at while she screams.
This whole ordeal takes less than one minute - hold, clean, poke, draw. I've said it before, but they are good.
In the mean time, Grace is behind me picking out "prizes" from the giant treasure box. This week she chose a hat for Claire and a jump rope for herself. The sweet nurses also gave Claire a new baby. I am fairly certain that the toys/prize buckets in all of the offices are the reason Grace asks to go with us each time.
This blood draw room is just that - a tiny little room with two people that draw blood all day long. One patient at a time goes in, and when they are done, the next enters. Samples are collected and then sent through a vacuum tube system through the walls of the giant hospital to the labs. One of Claire's samples goes to the main lab - the big lab in OHSU - where it waits in a queue with the rest of the blood draws to check her reticulocyte number. The other sample goes upstairs to the hematology clinic where they can instantly run a CBC in their office. In the past, by the time we get checked in (weight, height, blood pressure, temperature, and a fun sticker) and put in a room, someone is there with Claire's CBC numbers. Today was different. The doctor came right in, but no blood had been seen. After calling around, it was determined that Claire's blood was lost... somewhere in the walls of this huge building. Probably it just went to the wrong floor and whoever got it didn't know what to do with it. Really? I heard the nurses laughing about the person that just happens to find a vacuum tube with a little blood vial in it.
So, we had Claire's little exam - checking her heart, lungs, eyes, ears, tummy, etc. The doctor even peeked in my ear (I have a sinus infection and was afraid it had settled in my ear again). He confirmed that there was fluid, but that nothing was red or infected...yet. I was thrilled that our pediatric hematologist was willing to look in my ear and save me a trip to my doctor.
After her exam there was still no blood to be found, so Dr. Recht sent us to the play room. They were able to track down Claire's second sample in the main lab, so she didn't need to do another blood draw (though Grace would have loved another chance to dig through the prize box). We just had to wait until the lab had time to run her CBC and retic numbers.
The playroom is full of games, puzzles, books, toys, crafts, video games, etc. A lot of the patients on the floor are in the clinic all day long for chemo or blood transfusions (or both). The playroom was full of patients, siblings, parents, and a volunteer. The girls loved being in there... and I'm so glad we didn't have to entertain them in an exam room for that whole time.
You can tell the kids who spend a lot of time up there. This little boy - who's younger brother was receiving treatment for something - has been up there a lot. He was a little bossy, and naughty, but you start realizing that it is hard to blame him. He is probably just as tired of this playroom, this floor, and this hospital as his sick brother is. The excitement over prize buckets and new toys wears off quickly when this becomes your routine. He probably misses his friends, his school, and his "normal" - whatever that used to be.
Most of these sweet kiddos are connected to the same tubes and wires that Claire had only weeks ago. They are used to it, and play through it. The reality is, this could have been us. Not a day goes by when I don't remember that fact, and I am thankful for those memories. I don't want life to return to normal, for Claire to be cured, and for us to pretend that none of this ever happened. I want to remember these other kids, to pray for their families, and to not ever lose sight of what God has done in Claire's life... in all of our lives.
After about an hour in the playroom, Dr. Recht popped in and said he had results. We followed him to a conference room where he gave us a print out of Claire's numbers. And for the first time in weeks, we got a number that went up on its own! Her hemoglobin went from 10.1 up to 10.7. It isn't a giant leap, but it is definitely a small step in the right direction! Her hematocrit was down again from 32 to just over 31, and her reticulocyteRecht did say that he was glad her hemaglobin didn't drop again. He had been worried she would get down into the 9's and then we would have to start thinking about transfusing again. We are thrilled that the numbers climbed, she is making blood... slowly, but surely. We will go back next week to make sure this is a trend. Maybe next week she will be in the 12's!?!
Dr. Recht talked a little more about her possible diagnosis and why we haven't seen great big jumps in her numbers like he was expecting. Right now his working hypothesis is that Claire has/had TEC (transient erythrobastopenia of childhood). It is a slow developing anemia of childhood... we will likely never have an explanation of why Claire got it, or what caused it. Some professionals believe that it is caused by a virus that temporarily turns off the bone marrow. Who knows. Most kids who get it, recover fully in 1-2 months. Some are never diagnosed because the "strange" symptoms just go away. In Claire, however, she got really really sick. By the time we took her in her blood numbers were worse than critical. Because of this, the doctors treated her very aggressively - giving her three units (pints) of blood over the course of two days. Dr. Recht explained that typically when TEC patients are in the recovery stage you see really high reticulocyte numbers - 10-15% - as their bodies are trying desperately to remake red blood cells. In Claire's case, the doctors sort of did that for her. They tanked her up with so much good blood that her body has never actually felt anemic. She has never felt the need to make a lot of blood because the reality is that she doesn't need a lot. She just needs to maintain what she has.
So, though TEC is the most likely culprit, no one has given a once and for all diagnosis. For now we just need to continue watching her CBC numbers to make sure she is moving in the right direction. One week at a time.
In the mean time, Grace is behind me picking out "prizes" from the giant treasure box. This week she chose a hat for Claire and a jump rope for herself. The sweet nurses also gave Claire a new baby. I am fairly certain that the toys/prize buckets in all of the offices are the reason Grace asks to go with us each time.
This blood draw room is just that - a tiny little room with two people that draw blood all day long. One patient at a time goes in, and when they are done, the next enters. Samples are collected and then sent through a vacuum tube system through the walls of the giant hospital to the labs. One of Claire's samples goes to the main lab - the big lab in OHSU - where it waits in a queue with the rest of the blood draws to check her reticulocyte number. The other sample goes upstairs to the hematology clinic where they can instantly run a CBC in their office. In the past, by the time we get checked in (weight, height, blood pressure, temperature, and a fun sticker) and put in a room, someone is there with Claire's CBC numbers. Today was different. The doctor came right in, but no blood had been seen. After calling around, it was determined that Claire's blood was lost... somewhere in the walls of this huge building. Probably it just went to the wrong floor and whoever got it didn't know what to do with it. Really? I heard the nurses laughing about the person that just happens to find a vacuum tube with a little blood vial in it.
So, we had Claire's little exam - checking her heart, lungs, eyes, ears, tummy, etc. The doctor even peeked in my ear (I have a sinus infection and was afraid it had settled in my ear again). He confirmed that there was fluid, but that nothing was red or infected...yet. I was thrilled that our pediatric hematologist was willing to look in my ear and save me a trip to my doctor.
After her exam there was still no blood to be found, so Dr. Recht sent us to the play room. They were able to track down Claire's second sample in the main lab, so she didn't need to do another blood draw (though Grace would have loved another chance to dig through the prize box). We just had to wait until the lab had time to run her CBC and retic numbers.
The playroom is full of games, puzzles, books, toys, crafts, video games, etc. A lot of the patients on the floor are in the clinic all day long for chemo or blood transfusions (or both). The playroom was full of patients, siblings, parents, and a volunteer. The girls loved being in there... and I'm so glad we didn't have to entertain them in an exam room for that whole time.
Dr. Recht talked a little more about her possible diagnosis and why we haven't seen great big jumps in her numbers like he was expecting. Right now his working hypothesis is that Claire has/had TEC (transient erythrobastopenia of childhood). It is a slow developing anemia of childhood... we will likely never have an explanation of why Claire got it, or what caused it. Some professionals believe that it is caused by a virus that temporarily turns off the bone marrow. Who knows. Most kids who get it, recover fully in 1-2 months. Some are never diagnosed because the "strange" symptoms just go away. In Claire, however, she got really really sick. By the time we took her in her blood numbers were worse than critical. Because of this, the doctors treated her very aggressively - giving her three units (pints) of blood over the course of two days. Dr. Recht explained that typically when TEC patients are in the recovery stage you see really high reticulocyte numbers - 10-15% - as their bodies are trying desperately to remake red blood cells. In Claire's case, the doctors sort of did that for her. They tanked her up with so much good blood that her body has never actually felt anemic. She has never felt the need to make a lot of blood because the reality is that she doesn't need a lot. She just needs to maintain what she has.
So, though TEC is the most likely culprit, no one has given a once and for all diagnosis. For now we just need to continue watching her CBC numbers to make sure she is moving in the right direction. One week at a time.
Monday, January 17, 2011
The real American hero...
Guess who gave blood today for the first time. Guess who has been moping around tonight whining about his sore finger and iodine stained arm? Guess who is calling himself a hero? Guess who will give blood six times a year for the rest of his life? {insert my evil laugh here}
Guess who turned 14 months old today?
Guess who was there cheering on her daddy every step of the way? Guess who loved the juice, cookies, crackers, and trail mix?
Sunday, January 16, 2011
Carrots...
If she is going to steal from the groceries I am unloading, at least she chose something healthy. She must have known I wouldn't take these away from her. =) I'm not sure why she needed three, but it did keep her occupied while Merrick cooked dinner... until Grace came along and opened the hummus for her and we had a whole new mess on our hands.
Saturday, January 15, 2011
Three {and a half}...
I feel like so many of my posts lately have been about Claire, and rightly so. In the middle of her ordeal, however, our Gracie-girl turned three and a half. She will be the first to tell you so. There is no rounding down in Grace's world - if you say she is three she will quickly correct you, "No! I'm three and a half!" We had hoped to go out together to celebrate, but instead her grandparents brought her to us at the hospital where she happily ate lunch in the cafeteria (a bacon cheese burger) and gobbled up mango sorbet in Claire's room.
The older she gets, the less noticeable the change is. She is still so much the same as she was six months ago, yet she is older and there are a few differences.
Sleeping: Quiet times happen most days, but she usually only falls asleep one or two times a week.
Potty: Some people have been asking about her bladder/kidney issues. It seems that those are behind us. I am not sure what changed, but by the time we came home from the hospital with Claire, Grace was sleeping through the night and not rushing to the bathroom all day long. Perhaps it was a little irritation, perhaps she sensed the stress in our home. Whatever it was, we are so thankful that her "phantom urges" are gone and that she is not back to normal.
Learning: We are realizing that her brain is an incredible sponge right now. She is soaking up everything she hears and sees. She can count to thirty (aka 20-10) and is learning to count by tens. On December 26 she sounded out her first three words (sad, top, and wet). You have to catch her in the right mood, but there are times she will sit and read for a long time. Merrick is spending a lot of time teaching her phonetic rules, jail words, and words to memorize (and, to, the). She is also loving her "schools" and learning all sorts of songs, games and stories from each of them. We are thankful for these little groups that she gets to be a part of.
Sister: She is such a good big sister (almost all of the time) and has been so gracious throughout Claire's illness. I think she might be the single biggest prayer warrior in Claire's life to date. The other night as we were all praying she said, "please help Claire's 're-tickle-e-cites' grow, help her blood not be sick anymore, and help her not throw up ever again!"
Here are a few of my favorite grace-isms of late.
She is obsessed with lists, recipes, notes, etc. The other day she dictated a grocery list for me:
peppers
2 bags of red potatoes
2 bags of sweet potatoes
3 or 5 bays of oysters
2 bags of rice
Chevy's quesadilla
Rice
sweet potatoes
Purella
In a recent conversation with Merrick she said, "Daddy, you're blossom." She meant 'handsome.'
She likes to stand on her "dipty toes" to reach up high. She feels like she is getting too old to use her stool in the bathroom - even if that causes logistical problems for her.
She calls toys that make noise "rattle snakers."
The main service at our church is called "big nursery."
The other morning she was watching as I washed my face in the sink (something I usually do in the shower). She looked very confused as asked, "Why are you giving your face a bath."
Grace loves giving driving directions. She was talking on her [pretend] cell phone while I was driving the other day and I heard her say, "Yeah, but Cornelius Pass is closed, so go 85th to 35th. Around the block. Then go opposite of straight."
I have never been responsible for a car accident, but Grace has lately become concerned about my driving. I often hear, "Please don't run into cars or drive on the sidewalk. Please don't crash into that pole. Whoa, that was way too fast mama."
Her favorite Christmas song this year was Angels We Have Heard on High and when she would get to the chorus we would hear her belt out, "Gloooooooooooooooooooria, Emmet Kelsie's Christmas Day." (inexcelsis Deo)
Last week I was in the office packing the diaper back when I heard her from the kitchen say, "Mommy, I need help!" I paused and calmly asked "why" before running in there and she answered, "because there's thousands of straws on the floor!" It was Claire's fault, but Grace was diligently trying to help clean them up.
Shannon has watched Grace for us when we have had to take Claire up to Doernbecher for blood appointments. Shan has also known Grace since the day she was born and sees her at least a few times every week. Just to be on the safe side though, when Grace got in Shannon's car last week she said, "Shanny, don't try to feed me eggs or cashews because I am allergic." She is such a know-it-all (I wonder where she got that from?).
Last night Merrick didn't like something I said so he called me, "Mean ol' mommy." Grace said, Hey, don't call mommy old. Only grandpa is old!" (Notice she didn't say anything about calling mommy mean.)
Sleeping: Quiet times happen most days, but she usually only falls asleep one or two times a week.
Potty: Some people have been asking about her bladder/kidney issues. It seems that those are behind us. I am not sure what changed, but by the time we came home from the hospital with Claire, Grace was sleeping through the night and not rushing to the bathroom all day long. Perhaps it was a little irritation, perhaps she sensed the stress in our home. Whatever it was, we are so thankful that her "phantom urges" are gone and that she is not back to normal.
Learning: We are realizing that her brain is an incredible sponge right now. She is soaking up everything she hears and sees. She can count to thirty (aka 20-10) and is learning to count by tens. On December 26 she sounded out her first three words (sad, top, and wet). You have to catch her in the right mood, but there are times she will sit and read for a long time. Merrick is spending a lot of time teaching her phonetic rules, jail words, and words to memorize (and, to, the). She is also loving her "schools" and learning all sorts of songs, games and stories from each of them. We are thankful for these little groups that she gets to be a part of.
Sister: She is such a good big sister (almost all of the time) and has been so gracious throughout Claire's illness. I think she might be the single biggest prayer warrior in Claire's life to date. The other night as we were all praying she said, "please help Claire's 're-tickle-e-cites' grow, help her blood not be sick anymore, and help her not throw up ever again!"
She is obsessed with lists, recipes, notes, etc. The other day she dictated a grocery list for me:
peppers
2 bags of red potatoes
2 bags of sweet potatoes
3 or 5 bays of oysters
2 bags of rice
Chevy's quesadilla
Rice
sweet potatoes
Purella
In a recent conversation with Merrick she said, "Daddy, you're blossom." She meant 'handsome.'
She likes to stand on her "dipty toes" to reach up high. She feels like she is getting too old to use her stool in the bathroom - even if that causes logistical problems for her.
She calls toys that make noise "rattle snakers."
The main service at our church is called "big nursery."
The other morning she was watching as I washed my face in the sink (something I usually do in the shower). She looked very confused as asked, "Why are you giving your face a bath."
Grace loves giving driving directions. She was talking on her [pretend] cell phone while I was driving the other day and I heard her say, "Yeah, but Cornelius Pass is closed, so go 85th to 35th. Around the block. Then go opposite of straight."
I have never been responsible for a car accident, but Grace has lately become concerned about my driving. I often hear, "Please don't run into cars or drive on the sidewalk. Please don't crash into that pole. Whoa, that was way too fast mama."
Her favorite Christmas song this year was Angels We Have Heard on High and when she would get to the chorus we would hear her belt out, "Gloooooooooooooooooooria, Emmet Kelsie's Christmas Day." (inexcelsis Deo)
Last week I was in the office packing the diaper back when I heard her from the kitchen say, "Mommy, I need help!" I paused and calmly asked "why" before running in there and she answered, "because there's thousands of straws on the floor!" It was Claire's fault, but Grace was diligently trying to help clean them up.
Shannon has watched Grace for us when we have had to take Claire up to Doernbecher for blood appointments. Shan has also known Grace since the day she was born and sees her at least a few times every week. Just to be on the safe side though, when Grace got in Shannon's car last week she said, "Shanny, don't try to feed me eggs or cashews because I am allergic." She is such a know-it-all (I wonder where she got that from?).
Last night Merrick didn't like something I said so he called me, "Mean ol' mommy." Grace said, Hey, don't call mommy old. Only grandpa is old!" (Notice she didn't say anything about calling mommy mean.)
Tuesday, January 11, 2011
Broken record...
I'm starting to sound a bit like a broken record. Are you getting tired of hearing CBC numbers yet?
We had our weekly blood draw and hematology appointment at Doernbecher today. Claire's hemoglobin dropped again, but this time only from 10.8 to 10.1 and her hematocrit dropped from 33 to 32. Her reticulocyte count went up slightly from 2.2 to 2.4. If you remember last week I gave three acceptable scenarios... basically she fit #1. Her numbers stayed the same. Yes, I did just say that they went down, but that small of a drop doesn't really count. These aren't the high and perfectly normal numbers we are still waiting for, but I believe Dr. Recht's words today were, "this is great news!"
So again, we left feeling somewhat encouraged. I was hoping we would see much improved (higher) numbers and that the doctors would do a little happy dance. That didn't exactly happen. We do have to go back to the hospital every Tuesday for at least the next month. But, Claire is holding her own. Her body is trying to bounce back from the crippling anemia she faced less than one month ago. And we have so, so much to be thankful for.
It seems as though she is getting used to our weekly visits. She still screamed during her blood draw (actually, the screaming started when Merrick sat in the big red chair with her on his lap). But she pulled herself together and calmed down quickly when it was all done. We are having trouble keeping her happy in the exam room while we wait for blood results, but she is a big fan of the purple gloves and those always buy us at least 14 seconds of happiness. It was nice to not have Grace with us today (thanks again Shan), but she has already informed us that she will be going next time. I better start brainstorming now how to keep these girls happy at the hospital. Any ideas?
We had our weekly blood draw and hematology appointment at Doernbecher today. Claire's hemoglobin dropped again, but this time only from 10.8 to 10.1 and her hematocrit dropped from 33 to 32. Her reticulocyte count went up slightly from 2.2 to 2.4. If you remember last week I gave three acceptable scenarios... basically she fit #1. Her numbers stayed the same. Yes, I did just say that they went down, but that small of a drop doesn't really count. These aren't the high and perfectly normal numbers we are still waiting for, but I believe Dr. Recht's words today were, "this is great news!"
So again, we left feeling somewhat encouraged. I was hoping we would see much improved (higher) numbers and that the doctors would do a little happy dance. That didn't exactly happen. We do have to go back to the hospital every Tuesday for at least the next month. But, Claire is holding her own. Her body is trying to bounce back from the crippling anemia she faced less than one month ago. And we have so, so much to be thankful for.
It seems as though she is getting used to our weekly visits. She still screamed during her blood draw (actually, the screaming started when Merrick sat in the big red chair with her on his lap). But she pulled herself together and calmed down quickly when it was all done. We are having trouble keeping her happy in the exam room while we wait for blood results, but she is a big fan of the purple gloves and those always buy us at least 14 seconds of happiness. It was nice to not have Grace with us today (thanks again Shan), but she has already informed us that she will be going next time. I better start brainstorming now how to keep these girls happy at the hospital. Any ideas?
From Psalm 63 "You, God, are my God, earnestly I seek you; I thirst for you, my whole being longs for you... your love is better than life, my lips will glorify you. I will praise you as long as I live, and in your name I will lift up my hands... you are my help, I sing in the shadow of your wings..."
Don't burst her bubble...
She went to bed before the game was over. She doesn't know yet that the duckies lost the big game. We'll most likely break it to her slowly... perhaps over a Jamba Juice. I think she'll recover, but it may take some time.
We are heading back up to Doernbecher today for another blood draw and visit with Dr. Recht - Claire's hematologist. We are praying that we will get the good news we've been waiting for! We are so thankful, however, that they haven't just kept us at the hospital while we wait. Can you imagine? And speaking of the hospital, the medical bills have started rolling in. Grace was a hundred thousand dollar baby, and from the looks of it, Claire might be one too!
Monday, January 10, 2011
Sunday, January 09, 2011
Our church...
We go to a great church, and though I don't talk about it very often, we are very thankful for it. Today was one of those days that I was extra aware of the blessing our church body is to me... the people, the worship, the teaching, the prayer, the kids's ministry. Our church is big - sometimes too big - but it is good.
Today I was touched by the music. I love that so many of today's praise songs are based on scripture. In the middle of our Claire crisis I would often be singing a song that would lead me to a fantastic (and perfect) portion of scripture. Anyway, I wanted to capture a few excerpts from today's songs that I love - that have touched me deeply and reminded me of the awesome God we serve:
Today I was touched by the music. I love that so many of today's praise songs are based on scripture. In the middle of our Claire crisis I would often be singing a song that would lead me to a fantastic (and perfect) portion of scripture. Anyway, I wanted to capture a few excerpts from today's songs that I love - that have touched me deeply and reminded me of the awesome God we serve:
- "I'm so unworthy, but still You love me. Forever my heart will sing of how great You are." (Cannons by Phil Wickham)
- "When all of a sudden I am unaware of these afflictions eclipsed by glory and I realize just how beautiful You are, and how great Your affections are for me." (How He Loves by David Crowder)
- "Let the pain and the sorrow, be washed away, in the waves of His mercy" (All Who Are Thirsty by Kutless)
- "Our God is greater, our God is stronger. God you are higher than any other. Our God is healer, awesome in power" (Our God by Chris Tomlin)
- "My God is mighty to save" (Mighty to Save by Hillsong)
- "Turn your eyes upon Jesus. Look full in His wonderful face, and the things of earth will grow strangely dim, in the light of His glory and grace." (Turn Your Eyes Upon Jesus by Hillsong)
- "As I wait, you make me strong. As I long, draw me to your arms. As I stand, and sing your praise, you come, you come and you fill this place." (Meet With Me by Ten Shekel Shirt)
- "You guide me through the dark, you calm my fearful heart, and I will rest in you. You give me perfect peace, fulfill my deepest need, and I will rest in you." (Shining by Phil Wickham)
- "When the night seems so long... you can sing a new song... when you're weak He is strong. He can heal your wounded soul and calm the storm inside." (With Every Breath by Sixpence None the Richer)
Saturday, January 08, 2011
New Year, new faces...
New Year's is one of my favorite days of the year. Every year my Minthorne family gathers at my grandparents home at Friendsview. We share a meal together, hang out, play games, and catch up on the goings on of the past year. The family has grown so much... 8 aunts/uncles, 12 cousins, 9 cousin-in-laws, and 9 great-grandkids. I think 28 of us were there this year. Many of the others are scattered around the country - one in the army (who just got married!), one family in Oklahoma, one family in Wyoming, and one family in California. We miss those who can't be with us of course, but it is so great to see the others.
I spent most of my afternoon visiting with aunts (who I don't see often enough) and beating people at Blokus (a game that I might need to buy). Many people wanted to see and hold Claire and talk about her scary ordeal. I was once again reminded that so many people who have been praying for her will not be able to see her in person. Once you sit with her, see her playing and running and talking, it is hard to believe how sick she was a few weeks ago. And we are very glad for that.
The only downside to our gathering is trying to entertain the great-grands. The cousins - my generation - would ideally stick around for hours talking and playing games, but our kids grow restless and need room to run. This year my mom started walker races - loading one or two kiddos on GrammyLou's walker and running through the hallways. I'm not sure what people thought about her, but the kids loved it. At one point we realized that Aiden and Nathan had disappeared... turns out they took each other out on a joy ride. They were found (eventually) and returned to the big room very proud of themselves.
It was fun to meet Levi - not the youngest, but one of the newest members of our clan. He is such a sweet baby. Welcome to our crazy family little man. We are sure glad you are here!
I spent most of my afternoon visiting with aunts (who I don't see often enough) and beating people at Blokus (a game that I might need to buy). Many people wanted to see and hold Claire and talk about her scary ordeal. I was once again reminded that so many people who have been praying for her will not be able to see her in person. Once you sit with her, see her playing and running and talking, it is hard to believe how sick she was a few weeks ago. And we are very glad for that.
The only downside to our gathering is trying to entertain the great-grands. The cousins - my generation - would ideally stick around for hours talking and playing games, but our kids grow restless and need room to run. This year my mom started walker races - loading one or two kiddos on GrammyLou's walker and running through the hallways. I'm not sure what people thought about her, but the kids loved it. At one point we realized that Aiden and Nathan had disappeared... turns out they took each other out on a joy ride. They were found (eventually) and returned to the big room very proud of themselves.
Friday, January 07, 2011
Back to normal...
I remember sitting in the hospital with Claire thinking about how I will never be able to discipline her, scold her, be angry with her. She had been through so much that I couldn't imagine doing anything other than making the rest of her life as easy as possible. I think those feelings lasted approximately 22 hours before we started getting glimpses of naughty normal Claire again.
Now it seems that we brought home a new and improved version of our daughter... with more energy and curiosity than I know how to handle. She moves all the time, eats constantly, gets in to everything, and though she appears happy and easy going to most, she has developed this very unique way of ensuring that everything goes just how she sees fit. If she has something that you want, she will hold it close to her body and swing her arms back and forth saying "na, na, na." I'm fairly certain that she has already uttered the word "mine." And she is learning that running the other way is often times her best defense. She is a snowball of energy - rolling through life, sapping energy out of those around her, and adding it to her seemingly never-ending supply.
And even though I am tired. Even though I sometimes wish she would go back to napping twice a day. Even though it would be easier to have those sweet and snuggly moments back again. I am relishing in the fact that she is more than healthy. She is alive. She is vivacious. She is Claire (times ten). I will take the curiosity, the messes, the attitude, and the exhaustion any day!
Now it seems that we brought home a new and improved version of our daughter... with more energy and curiosity than I know how to handle. She moves all the time, eats constantly, gets in to everything, and though she appears happy and easy going to most, she has developed this very unique way of ensuring that everything goes just how she sees fit. If she has something that you want, she will hold it close to her body and swing her arms back and forth saying "na, na, na." I'm fairly certain that she has already uttered the word "mine." And she is learning that running the other way is often times her best defense. She is a snowball of energy - rolling through life, sapping energy out of those around her, and adding it to her seemingly never-ending supply.
And even though I am tired. Even though I sometimes wish she would go back to napping twice a day. Even though it would be easier to have those sweet and snuggly moments back again. I am relishing in the fact that she is more than healthy. She is alive. She is vivacious. She is Claire (times ten). I will take the curiosity, the messes, the attitude, and the exhaustion any day!
Ecclesiastes 9:10 "Whatever your hand finds to do, do it with all your might..."
Thursday, January 06, 2011
No words...
When I pulled Claire out of her crib this morning this is what she looked like...
I have no idea how this happened. I have no idea where to start "fixing" it. I have no words.
Practically sisters...
After a nearly month-long hiatus from our friends, we dived right back into life this week. Grace has been thrilled to spend time with so many of her friends... full days with Sydney, Baylie, Sophia, Mihiretu have really worn her (and me) out. It is fun to see them all pick up right where they left off.
Wednesday, January 05, 2011
Stool dancing...
This is just a glimpse of Claire's silly personality. She has some fantastic dance moves these days. I must also note that we originally had the camera out because she was climbing up and down this stool all by herself. Now that she is full of good blood we can hardly keep up with her. Oh, and excuse the funny noises in the background... it is just one of my crazy nieces (and if I knew which one, I would totally rat her out).
Motherwise started back up this week and I am really looking forward to our new study - Breaking Free by Beth Moore. It was so refreshing to see the ladies in my group again and to begin the ten week video series. Beth has so much wisdom and insight to share, and I am very much looking forward to what God has for me to glean from her. The passage that is the "theme" of our study is Isaiah 61:1-3
Motherwise started back up this week and I am really looking forward to our new study - Breaking Free by Beth Moore. It was so refreshing to see the ladies in my group again and to begin the ten week video series. Beth has so much wisdom and insight to share, and I am very much looking forward to what God has for me to glean from her. The passage that is the "theme" of our study is Isaiah 61:1-3
"The Spirit of the Sovereign LORD is on me,
because the LORD has anointed me
to proclaim good news to the poor.
He has sent me to bind up the brokenhearted,
to proclaim freedom for the captives
and release from darkness for the prisoners,
to proclaim the year of the LORD’s favor
and the day of vengeance of our God,
to comfort all who mourn,
and provide for those who grieve in Zion—
to bestow on them a crown of beauty
instead of ashes,
the oil of joy
instead of mourning,
and a garment of praise
instead of a spirit of despair.
They will be called oaks of righteousness,
a planting of the LORD
for the display of his splendor."
Tuesday, January 04, 2011
Sisters...
Sharing an early morning at grandma and grandpa's house. I didn't realize how quiet it had been until Margaret found me and told me to grab my camera. I hope these girls share many sweet moments like this throughout their lives.
Monday, January 03, 2011
Neutral news...
We are home from Doernbecher and got "neutral" news from Dr. Recht and his team today. Claire's hemoglobin dropped from 12.0 to 10.8 and her hematocrit dropped from 40 to 33. This is most likely a sign that some of the transfused blood has started to die off - which we expected. (Red blood cells have a life span of about 120 days. The transfused blood was living in the donors body for x number of days and then in the blood bank for x number of days, so it is normal for these numbers to drop a little.) What we will now wait to see is if Claire's marrow will kick in and start making her own red blood cells. The encouraging news is that Claire's reticulocyte count was up from .7 to 2.2. That means that her marrow is producing some red cells on its own... we will check again next week to see if it is enough.
So, next Tuesday we will go back for another blood draw and another meeting with Claire's hematology team. We are looking for one of three things... 1) For all of these numbers to stay exactly the same, 2) For her hemoglobin to go up and her reticulocyte to drop slightly, or 3) Her hemoglobin to drop and her reticuloctye to go up even more. Any of those scenarios would be a good thing. Basically her numbers need to balance each other - only time will tell if they are doing so.
The other interesting (if not encouraging) information we know is that her platelet count is high and climbing. This could be a sign that something is really wrong (which we know isn't the case), or just be her marrow's natural response to whatever caused the pause in her red blood cell production. Dr. Recht doesn't want to read too much into this, but did say that the high platelets might be encouraging.
Ultimately we came away today feeling pretty good. We didn't get the definitive good news that we are hoping for, but we learned that by watching her blood counts we could possibly get this good news gradually over the next few weeks (or months). We know that prayers are being answered and it is exciting to see what God is doing in Claire's little body.
Thank you again for your continued prayers, notes, encouragement, blood donations, etc. We appreciate everyones thoughtfulness and sincerity.
Here are a few pictures from our day. Doernbecher is so well set up for kids and families - there are toys everywhere, volunteers playing with patients waiting to be seen, and special treatment given to the siblings that are just along for the ride.
A sucker in her hand, and still eying the one in Grace's hand. (Grace is spaced out watching Monsters Inc.)
Walking through the oncology/hematology clinic like she owns the place. She gets hardly any attention up there at all. =)
And another verse to share - full of hope and promises for those who love and follow our Lord and Savior.
Zephaniah 3:15-17 "...The Lord, the King of Israel, is with you; never again will you fear any harm... The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."
So, next Tuesday we will go back for another blood draw and another meeting with Claire's hematology team. We are looking for one of three things... 1) For all of these numbers to stay exactly the same, 2) For her hemoglobin to go up and her reticulocyte to drop slightly, or 3) Her hemoglobin to drop and her reticuloctye to go up even more. Any of those scenarios would be a good thing. Basically her numbers need to balance each other - only time will tell if they are doing so.
The other interesting (if not encouraging) information we know is that her platelet count is high and climbing. This could be a sign that something is really wrong (which we know isn't the case), or just be her marrow's natural response to whatever caused the pause in her red blood cell production. Dr. Recht doesn't want to read too much into this, but did say that the high platelets might be encouraging.
Ultimately we came away today feeling pretty good. We didn't get the definitive good news that we are hoping for, but we learned that by watching her blood counts we could possibly get this good news gradually over the next few weeks (or months). We know that prayers are being answered and it is exciting to see what God is doing in Claire's little body.
Thank you again for your continued prayers, notes, encouragement, blood donations, etc. We appreciate everyones thoughtfulness and sincerity.
Here are a few pictures from our day. Doernbecher is so well set up for kids and families - there are toys everywhere, volunteers playing with patients waiting to be seen, and special treatment given to the siblings that are just along for the ride.
And another verse to share - full of hope and promises for those who love and follow our Lord and Savior.
Zephaniah 3:15-17 "...The Lord, the King of Israel, is with you; never again will you fear any harm... The Lord your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."
Sunday, January 02, 2011
Un-doing...
Claire decided that rather than going to bed she would "help" me pack. Really what that meant was that she sat in the suit case and pulled out everything that I neatly folded and packed. I guess when you are one, the un-doing is way more fun than the doing.
For anyone that is looking for a medical update on Claire, that will be posted either Monday night or Tuesday morning. Her appointment is at 1 pm on Monday and I am not sure how long it will be before we get the reticulocyte count from the doctor (at least a couple hours, but maybe overnight).
For anyone that is looking for a medical update on Claire, that will be posted either Monday night or Tuesday morning. Her appointment is at 1 pm on Monday and I am not sure how long it will be before we get the reticulocyte count from the doctor (at least a couple hours, but maybe overnight).
Saturday, January 01, 2011
New beginning...
While reading "My Utmost for His Highest" I came across this thought.
For now, we are enjoying time with family - can you tell by looking that our evening has been loud and crazy? I love each and every one of these kids.
"...before we choose to follow God's will, a crisis must develop in our lives. This happens because we tend to be unresponsive to God's gentler nudges. He brings us to the place where He asks us to be our utmost for Him and we begin to debate. He then providentially produces a crisis where we have to decide - for or against. That moment becomes a great crossroads in our lives. If a crisis has come to you on any front, surrender your will to Jesus absolutely and irrevocably. "This really sums up how I have been feeling as my family has traveled through this journey with Claire. It has interrupted the flow of our life. We faced a crisis. And yet here we stand, at the beginning of a new year, ready to surrender to Jesus... absolutely and irrevocably. My hope is that I become more responsive to His "gentler nudges" so we can be done with crises for a while.
For now, we are enjoying time with family - can you tell by looking that our evening has been loud and crazy? I love each and every one of these kids.
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