We thought it was about time to announce the new baby! We've been a little sleep deprived lately but will probably make a more detailed post shortly. Here she is: Rosalyn Elise weighing in at 7lbs 13oz and 20 inches long.
Tuesday, November 29, 2011
Monday, October 31, 2011
Halloween Fun!
It has been way too long since I have posted, and I am so happy to say it is because life is so very normal now. I have started emailing Clara at an email address Alan set up for her a while back. I am marking milestones there now, telling her little stories about what she did that day or week, etc. It is my way of keeping a journal now, and it is nice to catalog the nuances of the day without sharing them with the public world.
Alan and I have discussed taking the blog down at some point and sharing it with her one day when she's older - IF she is interested. But for now, I still want to share big milestones with you in her medical developments and big life experiences/moments.
The biggest, most wonderful things have happened lately.
Clara is still having some mild Graft vs Host Disease that look like dry patches on skin and scaly, dry skin on her scalp. The doctors have decided they want that to completely go away before we taper her Prograf. When they first told us this a couple of visits ago (~7 weeks ago), it was really disheartening. We were hoping Clara would be without an NG for Thanksgiving and the baby's arrival. But the Doctor explained a little bit more that if we moved to fast, we would end up taking more steps back, and chronic GvHD would result in her having to take all of these multiple meds for much longer. Clara's GvHD is so minor that they thought we were probably looking at 2-3 months of staying where we are with her meds. They also told us that she is actually doing relatively well considering her high risk for GvHD - most kids are still quite immunosuppressed at this time with worse GvHD symptoms. That discussion helped us realize that 2-3 more months of an NG wasn't really that bad compared to what could end up being another year.
At our most recent visit, last Monday, we were on a high! We had discovered Saturday morning that Clara's NG had fallen out overnight. We were torn about putting it back in because she fell back asleep in our bed and we just couldn't bring ourselves to wake her up to torture her by replacing it. We debated about adjusting her meds schedule a bit so that she could sleep a little bit longer. When she did wake up, Alan decided (without telling me) that he would see if she would take her most critical med (the Prograf) by mouth. I thought he had just gone to change her diaper until he announced she had taken it! She didn't even fuss! So we decided we'd see if she'd take the rest of them and just replace the tube later if she didn't comply. Folks, not only did she take her meds, but by Saturday night, she nodded "yes" when I said it was time for meds and crawled right into Alan's lap to take them. So, our visit to the hospital on Monday - we were beaming with pride and loving seeing Clara's whole face! It no longer mattered that she was going to be on Prograf and all these other PO meds for a couple more months because Clara was happy to take them and, we didn't need the NG!
It was actually our first transitional visit because Clara's Oncology fellow saw her instead of the Bone Marrow Transplant nurse practitioner. After checking Clara physically and looking at her lab results, the fellow consulting the BMT attending to ask if Clara could stop taking one of the meds. The attending admitted there wasn't a strong argument for keeping it on her list of meds as it is normally only given for the first 100 days after transplant. This was the most incredible news! I was almost crying. It meant that instead of Clara having to take 9 meds spaced across 5 times throughout the day, she only has to take 6 meds split into 2 times a day. What an incredible gift to Clara! She was so compliant and now she was going to have to endure so much less! Plus, the med they were taking off (valacyclovir) was the largest of her meds; so, this was effectively reducing her total med volume by 2/3rds!
It has now been almost 9 months since Clara's transplant and almost 8 since she was discharged. Because the doctor's were lifting some of the restrictions on her isolation and taking away some of the meds, I dared to ask if she could go to the hospital for their annual Trick or Treat Trail throughout the hospital and if it was safe for her to go without her mask. The answer was yes! I was so excited for her to be able to enjoy it this year as she was too sick to even wear a costume of any kind last year. I wanted to show her off to the nurses who haven't seen her since she was 10 months old and have never seen her without an NG tube. She loves other kids and calls them "baby!" when she sees them. I just knew she would love all the excitement. We got to see several of our very favorite nurses, most of her doctors, her physical therapist, a fellow patient that is 4 months younger than Clara and diagnosed with leukemia at 2 months of age, lots of kids, and there was so much going on! All the units have tables set out in the hall of every floor and even the maintenance department sets up a haunted house. You should see the costumes the staff wear and even the parents are dressed up. It was a lot of commotion and a lot of fun to be a part of. It was also really scary for Alan and I as we have kept her completely away from ANYTHING REMOTELY crowded for almost her entire life. But, man, did she have fun. Alan put her down for a moment when two of the nurses had come out to see her. She wouldn't stop spinning. She got so many "oh how cute!"s from strangers. We got a couple of pictures, but this video is the best. I intended to take more pictures but keeping her safe and talking with whomever had come out of the unit to see her was quite exhausting. We stayed for about an hour and would have loved to have let her completely run around. The only time we really let her go free was when she decided to run down the hallway which happened to lead out to the car. It was perfect timing and her nurse practitioner and fellow were both running down the hall with her before we all said goodbye. I was so proud. I think we will put the costume on again this evening just because she seems to enjoy it so much.
Lots to be happy about!
Alan and I have discussed taking the blog down at some point and sharing it with her one day when she's older - IF she is interested. But for now, I still want to share big milestones with you in her medical developments and big life experiences/moments.
The biggest, most wonderful things have happened lately.
Clara is still having some mild Graft vs Host Disease that look like dry patches on skin and scaly, dry skin on her scalp. The doctors have decided they want that to completely go away before we taper her Prograf. When they first told us this a couple of visits ago (~7 weeks ago), it was really disheartening. We were hoping Clara would be without an NG for Thanksgiving and the baby's arrival. But the Doctor explained a little bit more that if we moved to fast, we would end up taking more steps back, and chronic GvHD would result in her having to take all of these multiple meds for much longer. Clara's GvHD is so minor that they thought we were probably looking at 2-3 months of staying where we are with her meds. They also told us that she is actually doing relatively well considering her high risk for GvHD - most kids are still quite immunosuppressed at this time with worse GvHD symptoms. That discussion helped us realize that 2-3 more months of an NG wasn't really that bad compared to what could end up being another year.
At our most recent visit, last Monday, we were on a high! We had discovered Saturday morning that Clara's NG had fallen out overnight. We were torn about putting it back in because she fell back asleep in our bed and we just couldn't bring ourselves to wake her up to torture her by replacing it. We debated about adjusting her meds schedule a bit so that she could sleep a little bit longer. When she did wake up, Alan decided (without telling me) that he would see if she would take her most critical med (the Prograf) by mouth. I thought he had just gone to change her diaper until he announced she had taken it! She didn't even fuss! So we decided we'd see if she'd take the rest of them and just replace the tube later if she didn't comply. Folks, not only did she take her meds, but by Saturday night, she nodded "yes" when I said it was time for meds and crawled right into Alan's lap to take them. So, our visit to the hospital on Monday - we were beaming with pride and loving seeing Clara's whole face! It no longer mattered that she was going to be on Prograf and all these other PO meds for a couple more months because Clara was happy to take them and, we didn't need the NG!
It was actually our first transitional visit because Clara's Oncology fellow saw her instead of the Bone Marrow Transplant nurse practitioner. After checking Clara physically and looking at her lab results, the fellow consulting the BMT attending to ask if Clara could stop taking one of the meds. The attending admitted there wasn't a strong argument for keeping it on her list of meds as it is normally only given for the first 100 days after transplant. This was the most incredible news! I was almost crying. It meant that instead of Clara having to take 9 meds spaced across 5 times throughout the day, she only has to take 6 meds split into 2 times a day. What an incredible gift to Clara! She was so compliant and now she was going to have to endure so much less! Plus, the med they were taking off (valacyclovir) was the largest of her meds; so, this was effectively reducing her total med volume by 2/3rds!
It has now been almost 9 months since Clara's transplant and almost 8 since she was discharged. Because the doctor's were lifting some of the restrictions on her isolation and taking away some of the meds, I dared to ask if she could go to the hospital for their annual Trick or Treat Trail throughout the hospital and if it was safe for her to go without her mask. The answer was yes! I was so excited for her to be able to enjoy it this year as she was too sick to even wear a costume of any kind last year. I wanted to show her off to the nurses who haven't seen her since she was 10 months old and have never seen her without an NG tube. She loves other kids and calls them "baby!" when she sees them. I just knew she would love all the excitement. We got to see several of our very favorite nurses, most of her doctors, her physical therapist, a fellow patient that is 4 months younger than Clara and diagnosed with leukemia at 2 months of age, lots of kids, and there was so much going on! All the units have tables set out in the hall of every floor and even the maintenance department sets up a haunted house. You should see the costumes the staff wear and even the parents are dressed up. It was a lot of commotion and a lot of fun to be a part of. It was also really scary for Alan and I as we have kept her completely away from ANYTHING REMOTELY crowded for almost her entire life. But, man, did she have fun. Alan put her down for a moment when two of the nurses had come out to see her. She wouldn't stop spinning. She got so many "oh how cute!"s from strangers. We got a couple of pictures, but this video is the best. I intended to take more pictures but keeping her safe and talking with whomever had come out of the unit to see her was quite exhausting. We stayed for about an hour and would have loved to have let her completely run around. The only time we really let her go free was when she decided to run down the hallway which happened to lead out to the car. It was perfect timing and her nurse practitioner and fellow were both running down the hall with her before we all said goodbye. I was so proud. I think we will put the costume on again this evening just because she seems to enjoy it so much.
Lots to be happy about!
Friday, September 16, 2011
Day 246: No More MMF!
It's been two weeks since our last appointment. Clara had her Hickman taken out, and we have loved watching her flourish. With that thing gone, she has only changed the slightest bit in her behaviors as a result - like sleeping on her tummy now without having to tuck her knees underneath her to protect herself from the clamps cutting into her belly. Really, she doesn't have a clue. But we would look at her and just FEEL that she was different. We've loved giving her a bath every night, and she LOVES taking them. It is always right after dinner and Daddy wipes the majority of dinner off her hands and face while I run the water. She comes tearing around the corner and immediately starts counting 1, 2, 3...weeeee! in anticipation of being put in. I have to remind her that we have to take of her clothes and diaper. She is more than happy to assist by stepping out of her pant legs and pulling her shirt off (recent developments in her abilities).
Yesterday, we took her into the hospital for her normal labs and check of her skin. We got lots of GREAT news.
We are planning to go into the hospital for an infusion of IVIG as Clara has remained borderline low for 2 weeks. The doctors want to move us to having appointments every 3 or 4 weeks and so have decided they might as well just give her an IVIG dose so that they don't have to keep bringing us in weekly to see if it does or doesn't dip below her transfusion threshold.
The Boyle household is awfully happy. Without MMF, Alan and I even got to go to bed together for the first time in as long as we can remember. And it was the first time Alan has been to bed before midnight since before she was diagnosed. Alan's parents have been in town this week, and Clara has thoroughly enjoyed tossing Daddy and I off to the side and playing with her newest favorite play things! :-)
Yesterday, we took her into the hospital for her normal labs and check of her skin. We got lots of GREAT news.
- Her weight is up from 7.75kg to 7.9.
- Her length is - longer. Somewhere around 72-75cm. She hates this part and is quite a squirmer.
- Her CBC is finally back into the "stellar" category. Her white count is up from 4.2 to 6.4, and her ANC is up from 1400 to 1900.
- No. More. MMF!
We are planning to go into the hospital for an infusion of IVIG as Clara has remained borderline low for 2 weeks. The doctors want to move us to having appointments every 3 or 4 weeks and so have decided they might as well just give her an IVIG dose so that they don't have to keep bringing us in weekly to see if it does or doesn't dip below her transfusion threshold.
The Boyle household is awfully happy. Without MMF, Alan and I even got to go to bed together for the first time in as long as we can remember. And it was the first time Alan has been to bed before midnight since before she was diagnosed. Alan's parents have been in town this week, and Clara has thoroughly enjoyed tossing Daddy and I off to the side and playing with her newest favorite play things! :-)
Friday, September 9, 2011
I just...can't...stop!
Alan took Clara for a walk last Sunday and I drove to meet them at a county park. Clara is walking well enough now that we let her out of her stroller and let her walk around on a couple of cemented areas. Fortunately, she was excited enough by the fact that she could just walk and walk and walk in this expansive area, that she didn't start bending over to touch things (which is a no-no for her) until after we had been there for a while. Of course, most of the pictures are of her from behind. She was like a little Energizer Bunny. Going and going and going.
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| Look! I have my shoes on and I can walk OUTSIDE! |
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| No-No, Clara. Stay out of the dirt! |
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| See y'all later! |
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| No, that is not a basketball in Mommy's shirt...that's my baby sister! |
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| GRASS!!! |
Sunday, September 4, 2011
Hickman is OUT!
So that we will never forget and so that you all can see how tolerant and amazing our daughter is, I give you: Clara's last dressing change of her Hickman central IV line.
Looking a bit beaten up and worse for wear but VERY excited about this day! We were waiting for the Nurse Practitioner to come take a look at Clara's skin for her weekly appointment before heading downstairs to wait in yet another exam room in preparation for her Hickman removal procedure. It was a much more fun day for all involved because Daddy was with us! It made it much easier on Mommy and much more fun for Clara since she wasn't allowed to eat or drink until after her 12 noon procedure.
This is what Clara's Hickman looks like. The catheter (IV line) is actually in her heart and comes out of her subclavian artery in her neck and then in is tunneled just under the skin. It comes out on her chest just above her nipple where you see a little bluish circle called a biopatch with writing on it. The biopatch helps protect the open hole in her chest where the tube comes out. The biopatch and part of the tube are then covered by a square, transparent, shiny adhesive dressing. We then loop the catheter (because it is really too long for her little body) right back on top of the dressing and hold it in place there with the long piece of white foam tape. You can then see it runs down her torso between her nipples before it splits into 2 lines - one smaller and one larger in volume. At the point that it splits, we snap the lines into a stat-lock which has the butterfly-like wings coming off of it. This helps secure the line to her body and takes any impact or pulling that might happen on the line without pulling the IV out of her body. The two pieces hanging at the end have little blue caps that allow you to screw on syringes for infusion or for drawing blood. The blue caps also act as a mechanism for preventing blood to flow out. The blue caps had to be changed out for new ones twice a week. And just in case of possible failure of the blue caps, there are two white clamps just before the blue caps that clamp the line shut so that blood won't flow out. All of this has been attached to her torso since November of last year. Since you don't want water to creep just underneath the transparent dressing, we would have to cover ALL of this with GLAD Press and Seal Wrap if we wanted to bathe her. That was quite a hassle, and although it was an incredible discovery to learn that Press and Seal clings to skin so well, it was still a dangerous undertaking and a bit difficult on a moving squirming baby - even if she was fairly still. So glad to see this thing go now that it is really no longer needed. It was just in the way, a source of potential infection, prevented her from having a real bath, was no longer drawing blood dependably for her lab appointments, and required daily "flushing" of the line with heparin to prevent blood from clotting inside the catheter line. As of September 1, 2011 - Bye Bye Hickman!
Clara's procedure went well as far as we know. We did not get to speak with the surgeon after her procedure. In fact, when they called us to Recovery, we found Clara lying on her bed with one hand behind her head (the other still had an IV in the inner elbow) watching fish in an aquarium on TV while listening to classical music. The nurse had turned on exactly what she would have asked for. She didn't have a pacifier in her mouth or her bunny thumbie or Tutu snuggled next to her. She was completely chill and hardly even showed excitement when she saw Alan and I walking up. By the time I got to her bedside, she looked at me and made her fish mouth to tell me she was watching the fishes! I was astonished and exclaimed, "Fish! That's right, Bug! You are watching the fish!" I was quite near tears. At that moment, the nurse began removing Clara's IV. Clara tightened her eyes and turned her head towards me with a few whimpers and fusses - she didn't move otherwise. I was so impressed that she seemed to know it would be short-lived pain as the tape came off and a new pressure bandage applied.
I then realized, the only thing she would still be hooked up to at that point was the heart monitor, a blood pressure cuff on one calf, and an oxygen saturation sticker on her foot. I looked at the nurse to confirm she was okay with me picking her up and got a yes. She was unhooked from everything within a few seconds and all we were waiting for was a written note from a Dr. to let Clara go home. It was so amazing to know she was free. Clara took a graham cracker and began hungrily munching as we dressed her to go home.
We were required to wait 48 hours before giving Clara a tub bath which meant Saturday, September 3rd was Clara's first bath since she was 4 months old!
We cheated a little on Friday by putting the trusted GLAD Press and Seal over the teeny, tiny boo-boo on her chest. It completely sealed it from moisture and allowed Clara to get in the shower with Daddy! Alan's parents bathed him by putting him in the shower with his Dad, and it was something Alan always wanted to do with Clara. She has been standing tub side with great interest for about a month now watching the water flow from the faucet and shower head, and Alan would always create a little stream of water for her to touch with her outreached hand. She even seemed excited by any splashes she would get on her face. It was such a great treat to let her be able to get in WITH Daddy on Friday morning. Plus, we knew it would be a good transition just in case she had any apprehension for the tub bath on Saturday.
Saturday's bath with her brand new bath toys (and there are more coming in the mail) was so much fun! Alan demonstrated splashing once, and then we couldn't get her to stop. She loves the ducky squirting water on her torso and figured out how to stick the letters and numbers on the side of the tub by simple observation of us spelling her name on the side. It is also great fun to submerge the duck, frog, and cup.
Tonight's bath was initiated by Clara. She kept declaring bath as best she knew how "Da!" and nodding emphatically when I asked if she wanted to take a bath. I couldn't run the water fast enough and she was trying so hard to climb into the bathtub to join me as I got in. The best part of the bath tonight was when we discovered she LOVES to have water poured over her head and face. We had taken her NG out earlier today because we needed to switch to the other side. She was completely tube free and LOVING being in the water. "Gihn! Gihn!" She would say as soon as the water stopped pouring. She would slightly duck her head, close her eyes, open her mouth as wide as possible with her tongue sticking out and as big a smile as one can manage with your mouth wide open. It was so sad to end it after about half an hour as it got late and the water got cold. She was NOT okay with bath time being over, but we had to wind things down and allot time for a new NG placement, plus recovery time after that kind of trauma.
She handled it like a champ, and Alan and I discussed what a big girl she is. She is so used to the NG now that once it is in place, she completely forgets about it. We loved seeing her face for a few hours today and I am kicking myself for not having the camera capture the whole day and the bathtime. I was in the tub with her tonight and didn't even think about having Alan grab the camera. Hopefully only 3 more months and we will be done with ALL her tubes. Until then, we are thankful the NG can be there to make taking so many meds almost worry free.
Life is full of so many moments of progress and continual steps towards normalcy. We got the good news that because Clara's skin has looked so good for the past 3 weeks that we only have to go in for lab and clinic appointments every 2 weeks! That means Clara will only have to get poked in her arm every other week, it will be easier for this very pregnant lady, and Alan will only have to take off a morning every 2 weeks to help me get her to and through her appointments.
Thank you again to everyone. Your support during all of this has meant so much to us. We still struggle with frustrations and exhaustion and some depression as we continue with Clara's recovery - but we are in such a wonderful place right now and your support has helped carry us to where we are and get through what we have left over the next few months. I think we can handle a few more months of an NG tube....And then life should be completely normal as we welcome Baby Girl #2 to the family and enjoy an incredible Holiday Season as a happy, healthy family!
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Clara's procedure went well as far as we know. We did not get to speak with the surgeon after her procedure. In fact, when they called us to Recovery, we found Clara lying on her bed with one hand behind her head (the other still had an IV in the inner elbow) watching fish in an aquarium on TV while listening to classical music. The nurse had turned on exactly what she would have asked for. She didn't have a pacifier in her mouth or her bunny thumbie or Tutu snuggled next to her. She was completely chill and hardly even showed excitement when she saw Alan and I walking up. By the time I got to her bedside, she looked at me and made her fish mouth to tell me she was watching the fishes! I was astonished and exclaimed, "Fish! That's right, Bug! You are watching the fish!" I was quite near tears. At that moment, the nurse began removing Clara's IV. Clara tightened her eyes and turned her head towards me with a few whimpers and fusses - she didn't move otherwise. I was so impressed that she seemed to know it would be short-lived pain as the tape came off and a new pressure bandage applied.
I then realized, the only thing she would still be hooked up to at that point was the heart monitor, a blood pressure cuff on one calf, and an oxygen saturation sticker on her foot. I looked at the nurse to confirm she was okay with me picking her up and got a yes. She was unhooked from everything within a few seconds and all we were waiting for was a written note from a Dr. to let Clara go home. It was so amazing to know she was free. Clara took a graham cracker and began hungrily munching as we dressed her to go home.
We were required to wait 48 hours before giving Clara a tub bath which meant Saturday, September 3rd was Clara's first bath since she was 4 months old!
We cheated a little on Friday by putting the trusted GLAD Press and Seal over the teeny, tiny boo-boo on her chest. It completely sealed it from moisture and allowed Clara to get in the shower with Daddy! Alan's parents bathed him by putting him in the shower with his Dad, and it was something Alan always wanted to do with Clara. She has been standing tub side with great interest for about a month now watching the water flow from the faucet and shower head, and Alan would always create a little stream of water for her to touch with her outreached hand. She even seemed excited by any splashes she would get on her face. It was such a great treat to let her be able to get in WITH Daddy on Friday morning. Plus, we knew it would be a good transition just in case she had any apprehension for the tub bath on Saturday.
Saturday's bath with her brand new bath toys (and there are more coming in the mail) was so much fun! Alan demonstrated splashing once, and then we couldn't get her to stop. She loves the ducky squirting water on her torso and figured out how to stick the letters and numbers on the side of the tub by simple observation of us spelling her name on the side. It is also great fun to submerge the duck, frog, and cup.
Tonight's bath was initiated by Clara. She kept declaring bath as best she knew how "Da!" and nodding emphatically when I asked if she wanted to take a bath. I couldn't run the water fast enough and she was trying so hard to climb into the bathtub to join me as I got in. The best part of the bath tonight was when we discovered she LOVES to have water poured over her head and face. We had taken her NG out earlier today because we needed to switch to the other side. She was completely tube free and LOVING being in the water. "Gihn! Gihn!" She would say as soon as the water stopped pouring. She would slightly duck her head, close her eyes, open her mouth as wide as possible with her tongue sticking out and as big a smile as one can manage with your mouth wide open. It was so sad to end it after about half an hour as it got late and the water got cold. She was NOT okay with bath time being over, but we had to wind things down and allot time for a new NG placement, plus recovery time after that kind of trauma.
She handled it like a champ, and Alan and I discussed what a big girl she is. She is so used to the NG now that once it is in place, she completely forgets about it. We loved seeing her face for a few hours today and I am kicking myself for not having the camera capture the whole day and the bathtime. I was in the tub with her tonight and didn't even think about having Alan grab the camera. Hopefully only 3 more months and we will be done with ALL her tubes. Until then, we are thankful the NG can be there to make taking so many meds almost worry free.
Life is full of so many moments of progress and continual steps towards normalcy. We got the good news that because Clara's skin has looked so good for the past 3 weeks that we only have to go in for lab and clinic appointments every 2 weeks! That means Clara will only have to get poked in her arm every other week, it will be easier for this very pregnant lady, and Alan will only have to take off a morning every 2 weeks to help me get her to and through her appointments.
Thank you again to everyone. Your support during all of this has meant so much to us. We still struggle with frustrations and exhaustion and some depression as we continue with Clara's recovery - but we are in such a wonderful place right now and your support has helped carry us to where we are and get through what we have left over the next few months. I think we can handle a few more months of an NG tube....And then life should be completely normal as we welcome Baby Girl #2 to the family and enjoy an incredible Holiday Season as a happy, healthy family!
Wednesday, August 24, 2011
Clara-isms
Throwing toys as far as she possibly can...by walking them as far as she can see before dropping them.
Likes to sing and dance. Favorite songs include: the ABCs, Baba Yetu, and The Itsy Bitsy Spider. Her dancing involves alternating between swaying side to side while lifting each foot underneath to rhythmically crouching. It can include rapid stomping/running in place.
If we say, "See ya later!" as she is walking out of the room or around a corner, she will walk back into our line of site and wave with a big smile.
She is now has her first attachment item(s). As of my birthday, August 9th, she began greeting us after periods of sleep with her bunny thumbie from Potterybarn that she has always had in her crib. This past week, her "Tutu" doll from my cousin (also a crib companion) has joined the ranks with Bunny. She must have both when entering, leaving or getting ready for bed. They are also both great when she needs consoling. We will be taking them to the hospital next week so that they are there to comfort her (not that she really needs it) when coming out of anesthesia after having her Hickman removed.
She likes to put her head on the floor and walk around herself. Just sort of spinning on her head.
She will often play on the floor and then just lie flat on her stomach for a few short seconds to rest. There is a home video of me doing this at 1 year. It was always a dream of Alan's that our child would exhibit such cuteness mid-play.
She bit me the other day and after my outburst showed her first realization that she had done something wrong. She then pulled my shirt back every way she knew how to look at the skin she had biten that I had initially revealed to check for broken skin. A little bit later, she put her teeth on me again 4 times. Each time, holding back a bite as I told her not to bite.
She sticks her finger in her mouth when she sees someone sleeping in a book or when reading "and the quite old Lady who is whispering 'hush'" in Goodnight Moon before bed.
She has begun confirming "are you hungry?" or "It's time for night-night." by walking to me and waving bye-bye to Daddy or the room.
Bedtime routine has now moved from the living room into her now completed nursery. We dress her and do her final meds and heparin flushing of her Hickman on her dresser/changer. We all read Goodnight Moon together. She gives me snuggles as we turn out the light. I say "Go see Daddy" as I hand her to him. She completely falls back and to her right anticipating the crook of his arm. Then immediately cranes her head back and to the left anticipating my kiss on her left temple as I say "Mommy loves you sweet girl. It's time for night-night. I'll see you in the morning." Alan says she has even begun moving into the position he usually shifts to just before placing her in bed - before he even gets to the second lullaby.
She loves the bathtub. Leave the door open and she will bee-line straight to the tubside and declare, "Weay!" for wet/water. We can't wait til we can actually put her in that bathtub on Tuesday next week.
She loves Wheel of Fortune and will clap before the audience when someone solves a puzzle and will repeat the letters called by yelling "A!" for every letter. She will also clap when the Jeopardy Daily Double pops up...before the audience claps. She will also clap just after or as a song is finished playing when we turn on music in the house.
Clara's current "words":
Daddy
Baby
It's ready!
It's a tent!
Hi
Bye
All done
Mmmm (when anticipating food that she wants)
Coffee
Uh-oh
Water
Shhh
Cereal
Banana
Yay
Words for which Clara has representative sounds/signs:
Car/Truck
Butterfly
Elephant
Puppy
Giraffe
Bird
Monkey
Cat
Flower
Squirrel
Bunny
Mouse
Frog
Horse
Tiger/Lion
Fish
Sheep/Lamb/Goat
Mouse
Likes to sing and dance. Favorite songs include: the ABCs, Baba Yetu, and The Itsy Bitsy Spider. Her dancing involves alternating between swaying side to side while lifting each foot underneath to rhythmically crouching. It can include rapid stomping/running in place.
If we say, "See ya later!" as she is walking out of the room or around a corner, she will walk back into our line of site and wave with a big smile.
She is now has her first attachment item(s). As of my birthday, August 9th, she began greeting us after periods of sleep with her bunny thumbie from Potterybarn that she has always had in her crib. This past week, her "Tutu" doll from my cousin (also a crib companion) has joined the ranks with Bunny. She must have both when entering, leaving or getting ready for bed. They are also both great when she needs consoling. We will be taking them to the hospital next week so that they are there to comfort her (not that she really needs it) when coming out of anesthesia after having her Hickman removed.
She likes to put her head on the floor and walk around herself. Just sort of spinning on her head.
She will often play on the floor and then just lie flat on her stomach for a few short seconds to rest. There is a home video of me doing this at 1 year. It was always a dream of Alan's that our child would exhibit such cuteness mid-play.
She bit me the other day and after my outburst showed her first realization that she had done something wrong. She then pulled my shirt back every way she knew how to look at the skin she had biten that I had initially revealed to check for broken skin. A little bit later, she put her teeth on me again 4 times. Each time, holding back a bite as I told her not to bite.
She sticks her finger in her mouth when she sees someone sleeping in a book or when reading "and the quite old Lady who is whispering 'hush'" in Goodnight Moon before bed.
She has begun confirming "are you hungry?" or "It's time for night-night." by walking to me and waving bye-bye to Daddy or the room.
Bedtime routine has now moved from the living room into her now completed nursery. We dress her and do her final meds and heparin flushing of her Hickman on her dresser/changer. We all read Goodnight Moon together. She gives me snuggles as we turn out the light. I say "Go see Daddy" as I hand her to him. She completely falls back and to her right anticipating the crook of his arm. Then immediately cranes her head back and to the left anticipating my kiss on her left temple as I say "Mommy loves you sweet girl. It's time for night-night. I'll see you in the morning." Alan says she has even begun moving into the position he usually shifts to just before placing her in bed - before he even gets to the second lullaby.
She loves the bathtub. Leave the door open and she will bee-line straight to the tubside and declare, "Weay!" for wet/water. We can't wait til we can actually put her in that bathtub on Tuesday next week.
She loves Wheel of Fortune and will clap before the audience when someone solves a puzzle and will repeat the letters called by yelling "A!" for every letter. She will also clap when the Jeopardy Daily Double pops up...before the audience claps. She will also clap just after or as a song is finished playing when we turn on music in the house.
Clara's current "words":
Daddy
Baby
It's ready!
It's a tent!
Hi
Bye
All done
Mmmm (when anticipating food that she wants)
Coffee
Uh-oh
Water
Shhh
Cereal
Banana
Yay
Words for which Clara has representative sounds/signs:
Car/Truck
Butterfly
Elephant
Puppy
Giraffe
Bird
Monkey
Cat
Flower
Squirrel
Bunny
Mouse
Frog
Horse
Tiger/Lion
Fish
Sheep/Lamb/Goat
Mouse
Tuesday, August 16, 2011
Hickman removal scheduled!
Clara's Hickman will be removed on Tuesday, August 30th. 1 year to the day after her first central line was placed and 1 day less than a year before her first dose of chemo that sent her to the PICU. (See the blog post from the very beginning.)
In other good news, her skin looks good today despite her taper of MMF yesterday. Hoping that continues. I also got an email from her nurse practitioner to wean her sodium bicarbonate a bit more. We are now only giving 1ml 1x/day. That's a third of her original dose. Hope that means we may be rid of it next week and then will wean something else!
In other good news, her skin looks good today despite her taper of MMF yesterday. Hoping that continues. I also got an email from her nurse practitioner to wean her sodium bicarbonate a bit more. We are now only giving 1ml 1x/day. That's a third of her original dose. Hope that means we may be rid of it next week and then will wean something else!
Monday, August 15, 2011
Oh, how I loved today...let me count the ways!
- I signed the consent form for Clara's Hickman to be surgically removed. We should hear from General Surgery soon regarding when she is scheduled and are hoping it will be within the next couple of weeks.
- Her White Blood Cell count continues to be steady. She is at 4.7. up from 4.6 last week and in the 2.X range the 3 weeks previous. Associated with this increase in her labs is her ANC @ 1500 and her lymphocytes which are now in the 2,500 range. Lymphocytes are the sophisticated stuff that respond to things like immunizations! :-) We like to see that number so close to the normal range (which I hear begins at 3,000).
- Her chemistry was all in the normal range and Dr. Kharbanda commented on how great she looked. Her kidneys have had slightly elevated numbers for a long time. Nothing they were worried about but were just watching. Those numbers are now all in the normal range and her low end of normal blood pressure is an example of that. She is still being supported by high blood pressure meds, but we hope to see those go away soon as well.
- Her Prograf level was a little bit on the low side but they let us taper her MMF anyway. She is now getting the lowest amount of MMF ever! Hopefully, her skin will continue to look good. We discovered in this past week that the red, raw, itchy, dry skin she was having on her face was actually a result of me putting hydrocortisone on her face. The stuff I was trying to use to heal her face was actually making it worse! We switched to Aveeno lotion only, and she looks beautiful!
- Her weight was up from 7.6kg to 7.7kg! She had a really skinny point this past week and I added "Duocal" to her oatmeal one morning and to her pasta one afternoon. It is basically just carbs and fat. But she ate like a champ the next day so I hadn't given her anymore. Alan and I both noticed the pudge come back in her hands and feet and forearms and cheeks on Sunday, so I was glad the scale confirmed she was doing okay!
- The ONLY thing that didn't go perfectly today was that her prograf level being on the low side meant they did not decide to change our clinic visit frequency. If it had been in the target range, we were going to be granted visits only once every TWO WEEKS! I don't mind once a week so I wasn't too disheartened by this. All the other progress was so fabulous!
- On a really fun note: Clara repeated the words "red" and "blue" to me today when I asked her what colors her hospital armbands were. If two hospital staff hadn't been there to confirm "it was clear as day," I would have thought I had made it up. She still doesn't say "Mama" but she will say "reyh" and "beu"? We were not able to get her to do it again this evening for Alan.
- Also fun: she is officially walking. She spent most of the day (after our full morning at the hospital) walking in circles around the couch. Over and Over and Over and Over again. Or walking around the living room - switching direction randomly just for the heck of doing it. It was fabulous to watch her just smile as she would accomplish maneuvering around the room, or stepping on a torn out piece of magazine on purpose and then stepping off of it as she continued on her quest to walk. She was a bit pissed at us at bedtime because she had been having so much fun going from our room to hers down our miniature "hallway" and opening and closing each door as she would walk in and then out.
Such a happy, big (dare I say, healthy!) girl!
Monday, August 8, 2011
Hickman coming out!
So much great news to share!
Clara's bone marrow from 2 weeks ago has come back, and the results are negative for leukemia! Of course, this is fabulous news, but it was also news we have come to expect. Perhaps we take it for granted, but we are truly enjoying looking forward - not living in fear.
With a negative MRD (minimal residual disease) at the 6 month mark after transplant, the doctors can feel assured that Clara will not need further IV therapy (big stuff like chemo). So then comes the big question from Alan and I: Can we remove the Hickman central IV line? Answer: YES! The doctor is filing the paperwork today so that the schedulers can get her an appointment in the OR. We haven't heard a timeframe for when this will be scheduled but we are hoping for this week or the next.
We shared with you that Clara's white blood cell count had dropped just before my parents' visit in July, but I don't think that I mentioned it happened again. We've been watching it for a couple of weeks and it is finally back up. She's had a runny nose for a couple of weeks, too. So, knowing that her white count is back up even though the runny nose continues makes me feel a little bit more comfortable. Perhaps the runny nose really is just seasonal allergies- poor kiddo.
So, now, the only "struggle" left is that we don't need an NG tube for feedings! Clara has been eating like a champ for the past 2 weeks and is increasing her solid and fluid intake daily. We are sooo proud of her. She was 7.9kg before the NG tube wean, dropped to 7.55kg, was 7.75kg on Tuesday last week and then astonishingly dropped to 7.6kg today (she looks and feels so much bigger!). So why is this a struggle? She is going to be getting a significant number of meds through the end of the year (although fewer and fewer as time goes on),so we now have to figure out how to get her to take her meds by mouth. It has been a benefit of the NG tube and with the number of meds she is taking right now it has been a really good reason to leave the tube in. But we are really ready to be done with it. Making the decision to torture her with 22 meds over the course of a day is a difficult one to make. And I would think that if she had a choice between meds and the tube that she would pick the meds...I think. We are going to try a myriad of ways to give her her meds and will keep you updated on that front. Pray she really likes the taste of them! Some of them smell good, but whether or not she will consistently take those good tasting ones still remains to be seen.
Clara's bone marrow from 2 weeks ago has come back, and the results are negative for leukemia! Of course, this is fabulous news, but it was also news we have come to expect. Perhaps we take it for granted, but we are truly enjoying looking forward - not living in fear.
With a negative MRD (minimal residual disease) at the 6 month mark after transplant, the doctors can feel assured that Clara will not need further IV therapy (big stuff like chemo). So then comes the big question from Alan and I: Can we remove the Hickman central IV line? Answer: YES! The doctor is filing the paperwork today so that the schedulers can get her an appointment in the OR. We haven't heard a timeframe for when this will be scheduled but we are hoping for this week or the next.
We shared with you that Clara's white blood cell count had dropped just before my parents' visit in July, but I don't think that I mentioned it happened again. We've been watching it for a couple of weeks and it is finally back up. She's had a runny nose for a couple of weeks, too. So, knowing that her white count is back up even though the runny nose continues makes me feel a little bit more comfortable. Perhaps the runny nose really is just seasonal allergies- poor kiddo.
So, now, the only "struggle" left is that we don't need an NG tube for feedings! Clara has been eating like a champ for the past 2 weeks and is increasing her solid and fluid intake daily. We are sooo proud of her. She was 7.9kg before the NG tube wean, dropped to 7.55kg, was 7.75kg on Tuesday last week and then astonishingly dropped to 7.6kg today (she looks and feels so much bigger!). So why is this a struggle? She is going to be getting a significant number of meds through the end of the year (although fewer and fewer as time goes on),so we now have to figure out how to get her to take her meds by mouth. It has been a benefit of the NG tube and with the number of meds she is taking right now it has been a really good reason to leave the tube in. But we are really ready to be done with it. Making the decision to torture her with 22 meds over the course of a day is a difficult one to make. And I would think that if she had a choice between meds and the tube that she would pick the meds...I think. We are going to try a myriad of ways to give her her meds and will keep you updated on that front. Pray she really likes the taste of them! Some of them smell good, but whether or not she will consistently take those good tasting ones still remains to be seen.
Sunday, August 7, 2011
Pictures!
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| PAH- STAH! MMMM! She leans over her tray for this favorite food. It is just so good! |
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| Peanut Butter Sandwich. Another favorite. |
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| Uh-oh! Left a smidge of peanut butter on her fingers...no problem. We will just lick it off! |
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| Now you see it. |
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| Now you don't. Not to worry, though. The entire bowl of the adult spoon is IN HER MOUTH! No peanut butter left uneaten around here! |
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| Clara loves fish. Her first snack food during her floor picnic times were goldfish. She had access to them all the time while we were in the intensive part of the NG wean those first few days. She loves the fishy on the front. |
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| She always heads straight to this musical table after eating because I sing the ABCs while I clean up her hands and face. And, she knows that this table sings the ABCs. However, today, the fishes won her attention. She even hid a few inside a little compartment on the table so that she could eat some later. |
Saturday, July 30, 2011
Overwhelming Joy
I wish that I could share the truly, overwhelming joy that I am feeling this evening. Clara is eating. In fact, she is eating so much, that I am no longer charting estimates of how much she ate of what foods. Instead, I have adapted the chart to simply remind me of what a normal toddler is supposed to eat in a day. How may servings of dairy, protein, grains, fruits, veggies, milk, other fluids, etc. And since we have had no experience with this thing called solid foods, I have little reminders next to each category detailing what a serving size is of each. It is incredible that the 13th day of Clara's "wean" from NG feeds, I can officially say she knows how to eat until full.
Yesterday she ate an entire banana as part of her breakfast and an entire banana as part of lunch. PART. This morning's breakfast was a banana, a quarter of a jumbo egg, 2 oz of 2% milk (she no longer requires that it be coffee flavored so we will be moving her to whole milk tomorrow), an oz of yogurt and a quarter of a strip of bacon. Also remarkable today was her dinner: an entire carton of yogurt, two servings of lasagna, and a quarter of a banana for dessert. She's never had tomato/meat sauce presented to her before and she usually is handed a chunk of food that she bites off her preferred bite size. When I dolloped some of my meat sauce on her tray, she simply went to town. Didn't make a peep and absolutely knew how to get that food in her mouth with her little fine motor skill fingers. Honestly, the picture of her orange mouth stained in tomato sauce was just the most incredible sight....again no actual pictures to show the proof. This pregnant mama was hungry and didn't have the camera nearby. Plus, I might have ruined her progress!
Alan and I are both so, so very happy tonight. I feel great knowing this baby in my belly is not coming early and that there are no other signs of complications. Alan felt great knowing he fed her that carton of yogurt and then only had to watch as she devoured that lasagna and banana. We both felt great as we watched her play so happily and completely independently while we started the pre-bedtime routine of turning on the evening news. After she eats, there is such a difference in her demeanor. She has always had the most incredible disposition, but since she has started eating on her own, you can tell she is proud. She has this new found sense of independence and ability and she is so ready to tackle the world with her big smile across her face and her head thrown back in laughter.
I will admit, I'm ready to pull this tube out. But, I am cautiously optimistic at this point. We will wait to see what her weight is on Monday. Hopefully about where she was last Monday and not lower. We hear it can take about 2-3 months for kids to start gaining weight after being weaned from tube feeding. I don't think it will take her that long. But until we talk to the doctors and until we figure out some sort way of getting her meds down consistently and without too much trauma, we will leave it in as a fluid/nutrients back up and a meds administration aid.
Yesterday she ate an entire banana as part of her breakfast and an entire banana as part of lunch. PART. This morning's breakfast was a banana, a quarter of a jumbo egg, 2 oz of 2% milk (she no longer requires that it be coffee flavored so we will be moving her to whole milk tomorrow), an oz of yogurt and a quarter of a strip of bacon. Also remarkable today was her dinner: an entire carton of yogurt, two servings of lasagna, and a quarter of a banana for dessert. She's never had tomato/meat sauce presented to her before and she usually is handed a chunk of food that she bites off her preferred bite size. When I dolloped some of my meat sauce on her tray, she simply went to town. Didn't make a peep and absolutely knew how to get that food in her mouth with her little fine motor skill fingers. Honestly, the picture of her orange mouth stained in tomato sauce was just the most incredible sight....again no actual pictures to show the proof. This pregnant mama was hungry and didn't have the camera nearby. Plus, I might have ruined her progress!
Alan and I are both so, so very happy tonight. I feel great knowing this baby in my belly is not coming early and that there are no other signs of complications. Alan felt great knowing he fed her that carton of yogurt and then only had to watch as she devoured that lasagna and banana. We both felt great as we watched her play so happily and completely independently while we started the pre-bedtime routine of turning on the evening news. After she eats, there is such a difference in her demeanor. She has always had the most incredible disposition, but since she has started eating on her own, you can tell she is proud. She has this new found sense of independence and ability and she is so ready to tackle the world with her big smile across her face and her head thrown back in laughter.
I will admit, I'm ready to pull this tube out. But, I am cautiously optimistic at this point. We will wait to see what her weight is on Monday. Hopefully about where she was last Monday and not lower. We hear it can take about 2-3 months for kids to start gaining weight after being weaned from tube feeding. I don't think it will take her that long. But until we talk to the doctors and until we figure out some sort way of getting her meds down consistently and without too much trauma, we will leave it in as a fluid/nutrients back up and a meds administration aid.
Friday, July 29, 2011
Baby Girl Boyle #2!
We are overdue in our fully public announcement that Clara is going to be a big sister! Baby Girl Boyle is due November 30. I have been feeling contractions for about a week and resultantly got an ultrasound at the hospital today to make sure everything is okay. I'm not in preterm labor, and will be headed to the clinic this afternoon for the on-call Doctor to rule out any other possible complications.
After telling the Doctors about Clara during the ultrasound, they took quite an interest in her story. They decided that since I was already there and since the baby is a perfect age for 3D pictures, why not take a few (8) while we talked?
These are my favorites!
After telling the Doctors about Clara during the ultrasound, they took quite an interest in her story. They decided that since I was already there and since the baby is a perfect age for 3D pictures, why not take a few (8) while we talked?
These are my favorites!
Thursday, July 28, 2011
Wean Day 11
Today was so so. She did show better coordination with the noodles which is why she ate so much more. I am writing these notes late at the end of the day and feel like I am missing an entire meal somehow. I am getting better at noticing when she is getting hungry and trying to act quickly when she shows signs that she is hungry again vs watching the clock. She is also doing a great job of asking for something to drink. Breakfast definitely seems to be her best meal of the day. Never expected that. Perhaps I should be feeding her breakfast at every meal. She also seems to be over peanut butter and into yogurt. It's nice to see trends and preferences developing. Clearly still likes salty foods as she couldn't have been more insistent when Daddy pulled out the chips and queso tonight. She wanted those fritos! And we've never seen her eat so many. I still don't think she is chewing them...which makes me wonder how she is possibly comfortably swallowing some of these more "hard to eat" foods that she loves so much.
Wednesday, July 27, 2011
Progress! Eating meals and drinking milk!
Day 10:This day was so fabulous that I almost feel like I don't want/need to take notes. But it is so important to remember this day! Day 10. Clara had 3 meals and 1 snack today.
Breakfast: We started out the morning at 9:30 with a waffle on the couch while we watched the Today Show. I was hoping she might duplicate what she did on Monday when we were waiting at the hospital. No such thing. She nibbled. Hardly. So I became a bit more hardball and told her we really did have to eat. I sat her in her highchair and made some oatmeal for Alan who was feeling nauseous today. She ate about a Tablespoon of what I reserved for her. Then ate 1/4 of a jumbo egg, 1/4 strip of thick cut bacon, an oz of yogurt and about 3 oz of milk flavored with coffee out of her coffee cup. We call it coffee, of course. She was so intently eating and so happily. I had no idea that 1.5 hours had passed since she first sat down to eat! This put all her meds behind, but who cares?!?!
Lunch: I was surprised she was actually okay with sitting down to eat again, but she really enjoyed the new fusilli pasta I made her. It is hard for her to eat much of it though as her chewing skills are still developing. It would take her forever to get a full meal of pasta. So, I pulled out some yogurt once she slowed down on the pasta. She ate the rest of the yogurt save a few bites. So proud!
Snack: Since she accepted banana yesterday, I pulled it out again today. I gave her a really large piece of a large banana so she could get both hands around it really well. She did a great job of holding it until she had eaten about half of it and it was getting really slippery. I rolled it in some graham cracker crumbs but was afraid this would change it enough that she wouldn't be interested. Instead, her interest simply changed to eating the globby bits of crumb/banana that she could scrap off the banana. Make-shift banana pudding! I mashed it a bit and added more cracker crumbs, but then that made her loose interest.
Dinner: Alan did Clara's dinner while I made our dinner. She had scrambled eggs again - amazing Daddy with her skills. And more banana. Again, Daddy was very proud. He asked if she usually ate this much (at the time 1 adult bite). I reminded him she had only been touching banana to her lips for a long while until yesterday. Today she was really taking large bites an mashing it really well as her gums would come down around it. Her whole mouth was involved. Once she tired of that, we pulled out a new baby food-pear blueberry oats. I'm not even sure it is allowed as it is technically in the "thin-skinned" fruits category. I don't know if it has been cooked or pasturized before pureed. I hope it's okay. She ate about an oz of that. Totally new food and completely new flavors, yet she tolerated it. Once our dinner was done, she tried her best to eat some of my rice and although I thought she would have loved the dijon, heavy cream, thyme chicken we had, she only picked it up and put it back down to pick up rice instead. (She does love rice although she really fails at eating it.)
Such an amazing day. Way to go, Clara!
Breakfast: We started out the morning at 9:30 with a waffle on the couch while we watched the Today Show. I was hoping she might duplicate what she did on Monday when we were waiting at the hospital. No such thing. She nibbled. Hardly. So I became a bit more hardball and told her we really did have to eat. I sat her in her highchair and made some oatmeal for Alan who was feeling nauseous today. She ate about a Tablespoon of what I reserved for her. Then ate 1/4 of a jumbo egg, 1/4 strip of thick cut bacon, an oz of yogurt and about 3 oz of milk flavored with coffee out of her coffee cup. We call it coffee, of course. She was so intently eating and so happily. I had no idea that 1.5 hours had passed since she first sat down to eat! This put all her meds behind, but who cares?!?!
Lunch: I was surprised she was actually okay with sitting down to eat again, but she really enjoyed the new fusilli pasta I made her. It is hard for her to eat much of it though as her chewing skills are still developing. It would take her forever to get a full meal of pasta. So, I pulled out some yogurt once she slowed down on the pasta. She ate the rest of the yogurt save a few bites. So proud!
Snack: Since she accepted banana yesterday, I pulled it out again today. I gave her a really large piece of a large banana so she could get both hands around it really well. She did a great job of holding it until she had eaten about half of it and it was getting really slippery. I rolled it in some graham cracker crumbs but was afraid this would change it enough that she wouldn't be interested. Instead, her interest simply changed to eating the globby bits of crumb/banana that she could scrap off the banana. Make-shift banana pudding! I mashed it a bit and added more cracker crumbs, but then that made her loose interest.
Dinner: Alan did Clara's dinner while I made our dinner. She had scrambled eggs again - amazing Daddy with her skills. And more banana. Again, Daddy was very proud. He asked if she usually ate this much (at the time 1 adult bite). I reminded him she had only been touching banana to her lips for a long while until yesterday. Today she was really taking large bites an mashing it really well as her gums would come down around it. Her whole mouth was involved. Once she tired of that, we pulled out a new baby food-pear blueberry oats. I'm not even sure it is allowed as it is technically in the "thin-skinned" fruits category. I don't know if it has been cooked or pasturized before pureed. I hope it's okay. She ate about an oz of that. Totally new food and completely new flavors, yet she tolerated it. Once our dinner was done, she tried her best to eat some of my rice and although I thought she would have loved the dijon, heavy cream, thyme chicken we had, she only picked it up and put it back down to pick up rice instead. (She does love rice although she really fails at eating it.)
Such an amazing day. Way to go, Clara!
Tuesday, July 26, 2011
Wean Day 9
After seeing Clara's weight drop so much, we decided to reconsider giving her fluids during the day and as she goes to bed at night. I took another look at how another mom chronicled her son's progress and amended her approach for her son to fit how Clara is doing at this point. So, we are now giving her 60ml (2oz) of formula 4x/day and then 175ml as she goes to bed. She is drinking enough during the day that combined this makes me feel better about her whole hydration, plus making sure she gets more calories...even if that still isn't nearly enough. The best part about today was that she started out by drinking milk from a coffee cup. 100% milk is a lot better than water with a tiny tiny bit of milk mixed in. Guess the coffee cup is cool enough to make anything taste good.
Breakfast: So excited to see her drink milk this morning! She also ate some of everything I put on her plate. Waffle, scrambled eggs and banana. I haven't seen her actually take bites of banana in a long time. Also very exciting. She spilled her coffee/milk all over her tray and lost interest in her food after it got cold and soggy. After re-toasting her waffle, she ate another good few bites.
Snack: An hour after breakfast she found an empty box of wheat thins and was insisten that we give her some. I finally got her distracted with Ritz crackers of which she ate a few bites. She then became fixated on playing with the milk in her coffee cup, playing with it with her hands, holding it to her face and talking into the mug, and drinking it. Good fun!
Lunch: She basically refused lunch.
Snack:After her nap, she found the wheat thins box again (I should have thrown it away). Thank goodness she accepted Ritz, then Goldfish. She then had a whole lot of fun with her different cups playing with, and (hardly) drinking from them. She tasted the tunafish on a couple of occasions while moving it from the bowl to her fork to the cup to the bowl. Once she was all done, I actually toasted a waffle and we sat in front of the TV. She ate a good amount and then announced all done.
Dinner: Thank goodness for Daddy! Clara ate none of the breakfast sausage I served her but loved the fusilli again. She was also more successful at eating them. She said she was all done and I was pretty depressed about how little she ate today without seeming affected by it. I'm starting to see her face really slim down though. Daddy said she needed to eat and he would do it. Wahoo! 3.5 oz of yogurt and 1.5 Tbsp of peanut butter!
Breakfast: So excited to see her drink milk this morning! She also ate some of everything I put on her plate. Waffle, scrambled eggs and banana. I haven't seen her actually take bites of banana in a long time. Also very exciting. She spilled her coffee/milk all over her tray and lost interest in her food after it got cold and soggy. After re-toasting her waffle, she ate another good few bites.
Snack: An hour after breakfast she found an empty box of wheat thins and was insisten that we give her some. I finally got her distracted with Ritz crackers of which she ate a few bites. She then became fixated on playing with the milk in her coffee cup, playing with it with her hands, holding it to her face and talking into the mug, and drinking it. Good fun!
Lunch: She basically refused lunch.
Snack:After her nap, she found the wheat thins box again (I should have thrown it away). Thank goodness she accepted Ritz, then Goldfish. She then had a whole lot of fun with her different cups playing with, and (hardly) drinking from them. She tasted the tunafish on a couple of occasions while moving it from the bowl to her fork to the cup to the bowl. Once she was all done, I actually toasted a waffle and we sat in front of the TV. She ate a good amount and then announced all done.
Dinner: Thank goodness for Daddy! Clara ate none of the breakfast sausage I served her but loved the fusilli again. She was also more successful at eating them. She said she was all done and I was pretty depressed about how little she ate today without seeming affected by it. I'm starting to see her face really slim down though. Daddy said she needed to eat and he would do it. Wahoo! 3.5 oz of yogurt and 1.5 Tbsp of peanut butter!
Wean Day 8 plus Hospital Visit
Monday started out great as Clara ate almost half a waffle while we waited to have her weekly labs drawn. After over half an hour the nurse came to get us for ...surprise!... Admission to the Day Hospital for IVIG. They didn't tell me this appointment was for IVIG. Completely unprepared for. 5+ hour day at the hospital, I called Alan to have him bring more food for Clara, toys, her meds for the morning and afternoon, and most urgently - a cup of coffee. I hate IVIG days.
Clara had an allergic reaction to IVIG the first time she got it so they premedicate her with benadryl before the infusion which makes her a real grumpy fussy face. That threw off any anticipated gains in her eating. In fact, she didn't eat anything until that night when Alan brought home pizza and, for Clara, a chocolate shake. She refused it at first and then drank more than either Alan or I had.
Alan and I are revising her nutrition plan again after seeing her weight. She dropped from 7.9kg last Wednesday (her highest ever has been 8.05kg) to 7.55kg on Monday. That is 4.5% weight loss. None of us were happy to see that number, but it was also expected that she would have dropped. She has plateaued at that 7.9kg for a couple of months now and the only thing we could expect was for her to drop her weight since I quit feeding her and she is just not eating enough on her own yet. Fortunately, her kidney numbers and electrolytes look great. I'll talk more about the latest plan in my next post.
We did find out as we were leaving the hospital that Clara's white blood count is low again. Just like 3.5 weeks ago when she got IVIG. I'm not sure what is causing this and am trying to not be overly concerned. I hope she is just fighting a little something and slowly depleting her white count over the course of a month. We are expecting a call from the nurse practitioner today regarding taking labs less frequently (every 1.5 weeks instead of every week) because her numbers have been very steady for so long and we aren't having to make changes in her medications anymore. The plan for removing her Hickman central IV line has changed a bit - we are now waiting to find out about the health of her 6 month marrow from last week. Once you have both a good looking 6 month marrow and don't need to draw labs more than about 1.5 weeks, they are more confident that you will no longer need further therapy and will discuss scheduling taking the line out. This was great to hear yesterday, but considering the fact that she seems to be dependent on the IVIG every 4 weeks, I assume that will delay line removal. We will see when I talk to the NP later today.
Clara had an allergic reaction to IVIG the first time she got it so they premedicate her with benadryl before the infusion which makes her a real grumpy fussy face. That threw off any anticipated gains in her eating. In fact, she didn't eat anything until that night when Alan brought home pizza and, for Clara, a chocolate shake. She refused it at first and then drank more than either Alan or I had.
Alan and I are revising her nutrition plan again after seeing her weight. She dropped from 7.9kg last Wednesday (her highest ever has been 8.05kg) to 7.55kg on Monday. That is 4.5% weight loss. None of us were happy to see that number, but it was also expected that she would have dropped. She has plateaued at that 7.9kg for a couple of months now and the only thing we could expect was for her to drop her weight since I quit feeding her and she is just not eating enough on her own yet. Fortunately, her kidney numbers and electrolytes look great. I'll talk more about the latest plan in my next post.
We did find out as we were leaving the hospital that Clara's white blood count is low again. Just like 3.5 weeks ago when she got IVIG. I'm not sure what is causing this and am trying to not be overly concerned. I hope she is just fighting a little something and slowly depleting her white count over the course of a month. We are expecting a call from the nurse practitioner today regarding taking labs less frequently (every 1.5 weeks instead of every week) because her numbers have been very steady for so long and we aren't having to make changes in her medications anymore. The plan for removing her Hickman central IV line has changed a bit - we are now waiting to find out about the health of her 6 month marrow from last week. Once you have both a good looking 6 month marrow and don't need to draw labs more than about 1.5 weeks, they are more confident that you will no longer need further therapy and will discuss scheduling taking the line out. This was great to hear yesterday, but considering the fact that she seems to be dependent on the IVIG every 4 weeks, I assume that will delay line removal. We will see when I talk to the NP later today.
Sunday, July 24, 2011
NG Wean: Days 6 and 7
Day 6
Breakfast was in 2 phases. She didn't act particularly hungry when we sat down to eat at 9. She did eat her largest amount of waffle and enjoyed watching me make scrambled eggs, coffee and heating her lil smokies. Once the eggs and sausage came, she was interested in both but only touched the sausages. You could tell she was really interested in the texture of the eggs in her mouth and she would inspect the strands of egg that would hang off the chunck that was in her hands. It wasn't until 11 (NPO for Prograf at 10) that she finally ate with signs of hunger. She was quite fussy in a normal toddler way throwing mini fits if she didn't get her way. I assumed it was hunger and reheated her breakfast. No interest. I brought the banana yogurt and she would lick her lips if I touched it to her but she didn't open her mouth for more. I decided to pull out her new toddler spoon and pretend feed her rubber ducky. She got into feeding the ducky and attempted to eat the yogurt off of his tail (the yogurt was on his beak) but still didn't respond to the spoon of yogurt on her mouth. I scooped some yogurt into one of the dividers on her tray. I didn't tell her what was I doing...just walked away. She immediately picked up her spoon and began to dip her spoon to eat the yogurt. Within a couple of minutes she made a little fuss. I joined her and she both fed herself, let me put more on her baby spoon with her toddler spoon, and let me feed her with the toddler spoon. 2 oz later she was done. I called the fellow to let him know we didn't have a poop yesterday and was concerned if we didn't see one today. He said to wait until Monday at which point I told him we have a clinic visit scheduled. She pooped a beautiful, well-formed, solid foods poop during the call. Much happier baby.
Lunch was really more of a snack at 1 before her nap. She was really tired and in quite a daze after having listened to some classical music with Alan. I knew we would have to depend on the old staple of a peanut butter sandwich. She quite refused it and goldfish crackers until Alan and I both sat down in the dining room with her. We turned away from her and chatted while she picked up the sandwich and ate. She finally drank bit more (she hadn't had anything from her straw cup since she first woke up this morning.). Again we played with sipping and then squeezing the straw to make it squeal. After her nap, we played for a bit before sitting down to eat a snack at 4:30. I fixed a Gerber toddler meal of pasta and green beans. It was as I had hoped a fairly good finger food meal but she had a hard time with how slippery it was. She kept scrunching her nose at the green beans but continued to put it in her mouth as best she could. Alan sat with her for this meal and tried to assist her. She would get pretty indignant. She fairly quickly chirped "Dah!" (done) over and over with a smile and the hand signs. We immediately cleaned her up but then set up a picnic of cheese, crackers and turkey breast...she immediately began eating her slice of cheese after I had handed "Daddy's cheese" and "Mommy's cheese" out. She picked hers right up. Once she got tired of that we added a bit of peanut butter on her baby spoon from her toddler knife. That got the eating going again and she was more interested in the Ritz cracker.
Dinner was surprising as she actually tore pieces of bacon off and ate it. She was really enjoying holding and being able to eat the fusilli pasta. I had a feeling that would be a fun one for her. You could tell she wanted more than the rate she was able to eat. She kept trying to eat the bowl it was in. Knowing she tried as hard as she could, but that it was getting too close to bedtime, we put her to bed with a 175ml formula feed so she didn't go to bed hungry.
Day 7
Today was fairly frustrating for each of us. Clara is continuing to do a great job. Intake is no where near where we want it. Decided supplementing with formula is a good thing to give her enough energy throughout the day. She is still building skills necessary to eat the solid finger foods she prefers. We are trying to give her the opportunity to eat yogurt and other spoon-fed foods throughout the day so that if she is hungry, she CAN eat enough to become satiated or full. That is also why we pulled out the chocolate shake again. She enjoyed taking turns with Mommy and Daddy as we all drank from the same shake. Frustrated by a decreased interest in her straw cup, I started a window sill of different cups and bottles for her to choose from. It worked well. Today's drop in attitude from Clara and Mommy had to do with Clara's decision to throw a fit about naptime. Naptime ended up being a 3 hour ordeal. She is rarely upset by anything and rarely cries. I fear the independence of a true toddler is coming out. She even threw her face into her hands a couple of times to show that she was upset...about nothing. :-/ Hoping labs look okay tomorrow. Night feeds aren't working out too well, and we have been at 600+ as her total fluids the past couple of days not 800. She has been peeing plenty, so I'm not worried about dehydration on a macro level. Hope her kidneys are okay.
Breakfast was in 2 phases. She didn't act particularly hungry when we sat down to eat at 9. She did eat her largest amount of waffle and enjoyed watching me make scrambled eggs, coffee and heating her lil smokies. Once the eggs and sausage came, she was interested in both but only touched the sausages. You could tell she was really interested in the texture of the eggs in her mouth and she would inspect the strands of egg that would hang off the chunck that was in her hands. It wasn't until 11 (NPO for Prograf at 10) that she finally ate with signs of hunger. She was quite fussy in a normal toddler way throwing mini fits if she didn't get her way. I assumed it was hunger and reheated her breakfast. No interest. I brought the banana yogurt and she would lick her lips if I touched it to her but she didn't open her mouth for more. I decided to pull out her new toddler spoon and pretend feed her rubber ducky. She got into feeding the ducky and attempted to eat the yogurt off of his tail (the yogurt was on his beak) but still didn't respond to the spoon of yogurt on her mouth. I scooped some yogurt into one of the dividers on her tray. I didn't tell her what was I doing...just walked away. She immediately picked up her spoon and began to dip her spoon to eat the yogurt. Within a couple of minutes she made a little fuss. I joined her and she both fed herself, let me put more on her baby spoon with her toddler spoon, and let me feed her with the toddler spoon. 2 oz later she was done. I called the fellow to let him know we didn't have a poop yesterday and was concerned if we didn't see one today. He said to wait until Monday at which point I told him we have a clinic visit scheduled. She pooped a beautiful, well-formed, solid foods poop during the call. Much happier baby.
Lunch was really more of a snack at 1 before her nap. She was really tired and in quite a daze after having listened to some classical music with Alan. I knew we would have to depend on the old staple of a peanut butter sandwich. She quite refused it and goldfish crackers until Alan and I both sat down in the dining room with her. We turned away from her and chatted while she picked up the sandwich and ate. She finally drank bit more (she hadn't had anything from her straw cup since she first woke up this morning.). Again we played with sipping and then squeezing the straw to make it squeal. After her nap, we played for a bit before sitting down to eat a snack at 4:30. I fixed a Gerber toddler meal of pasta and green beans. It was as I had hoped a fairly good finger food meal but she had a hard time with how slippery it was. She kept scrunching her nose at the green beans but continued to put it in her mouth as best she could. Alan sat with her for this meal and tried to assist her. She would get pretty indignant. She fairly quickly chirped "Dah!" (done) over and over with a smile and the hand signs. We immediately cleaned her up but then set up a picnic of cheese, crackers and turkey breast...she immediately began eating her slice of cheese after I had handed "Daddy's cheese" and "Mommy's cheese" out. She picked hers right up. Once she got tired of that we added a bit of peanut butter on her baby spoon from her toddler knife. That got the eating going again and she was more interested in the Ritz cracker.
Dinner was surprising as she actually tore pieces of bacon off and ate it. She was really enjoying holding and being able to eat the fusilli pasta. I had a feeling that would be a fun one for her. You could tell she wanted more than the rate she was able to eat. She kept trying to eat the bowl it was in. Knowing she tried as hard as she could, but that it was getting too close to bedtime, we put her to bed with a 175ml formula feed so she didn't go to bed hungry.
Day 7
Today was fairly frustrating for each of us. Clara is continuing to do a great job. Intake is no where near where we want it. Decided supplementing with formula is a good thing to give her enough energy throughout the day. She is still building skills necessary to eat the solid finger foods she prefers. We are trying to give her the opportunity to eat yogurt and other spoon-fed foods throughout the day so that if she is hungry, she CAN eat enough to become satiated or full. That is also why we pulled out the chocolate shake again. She enjoyed taking turns with Mommy and Daddy as we all drank from the same shake. Frustrated by a decreased interest in her straw cup, I started a window sill of different cups and bottles for her to choose from. It worked well. Today's drop in attitude from Clara and Mommy had to do with Clara's decision to throw a fit about naptime. Naptime ended up being a 3 hour ordeal. She is rarely upset by anything and rarely cries. I fear the independence of a true toddler is coming out. She even threw her face into her hands a couple of times to show that she was upset...about nothing. :-/ Hoping labs look okay tomorrow. Night feeds aren't working out too well, and we have been at 600+ as her total fluids the past couple of days not 800. She has been peeing plenty, so I'm not worried about dehydration on a macro level. Hope her kidneys are okay.
Friday, July 22, 2011
1st day of no NG feeds
I'm jumping into the story quite a bit in order to quickly update friends and family that have heard we are weaning Clara off of NG tube feedings. She has been putting food to her mouth for about 4 months now. Initially, it was simply uninteresting and she was dealing with daily nausea. In the last month, she began to be fully interested in what we were eating - or drinking. OT told us that she had very immature tongue and mouth behaviors (because all she has done with her mouth is suck on a pacifier). We worked on a couple of exercises and stopped giving her a sippy cup- to try to correct her tongue thrust and to get her to gum/chew on objects and food. 3 weeks ago she would only bite some very easily dissolved veggie chips with her top teeth and her tongue. This past weekend, she ate an entire peanut butter sandwich. HUGE changes. We new she was ready to eat on her own.
I don't have good summary notes of our first few days of this process. We basically slowly reduced how much formula we gave her through the tube by 30%, then 50% for a couple of days, then 70%. Today, we only gave her pedialyte to keep her hydrated. I began a very detailed chart the first day of the wean which keeps track of the foods I gave her, how much she ate, how much she liked/disliked them, how many pee vs poo diapers she had, how much formula via tube vs water by mouth she drank. There is a main planning page which pulls summary data from each daily tab. I send it to the doctors so they can know how she is doing as we go through the process. Yesterday, I began a descriptive summary of "thoughts" in addition to the factual information. It helps me remember the touchy feeling part of what is happening and kind of explains for the doctors why she might or might not have gotten what I had told them I planned to do.
I thought you all might like to be able to read the summary parts of it so you can keep up with how she is doing. The days are long and hard and involve quite a bit of fixing and cleaning up food. So the notes will be lacking in much structure. But you'll be able to hear some of what happened at least!
Wean Day 4:
she ate lots of snacky bits all day and the messes got so out of control that I couldn't mentally keep up with how much she ate of what and what the nutritional value was for each. We woke up at 5:45am with her newly placed NG hanging out…tired mommy by mid day. She did eat lots of goldfish and lots of peanut butter at dinner; fair amount of cheese consumption over the day as well as chocolate pediasure and chocolate shake cumulatively. I'm getting a little bit more worried as a mother simply because I have been so focused on getting her NG feeds perfect for so long. To not feed her is stressful. And I worry about not being able to make up for her hydration at night if she doesn't pick up her drinking during the day. She seems to drink the most after sleeping and in the evenings. 800ml is a lot to give her overnight without waking up simply to change her diaper. She finally has learned to sleep completely through the night despite her 11pm and 12am meds. I am pretty hopeful about tomorrow. I think it is time to make her eat all on her own. If anything, I will give her pedialyte during the day. Not formula. I have lots new food options for her tomorrow including higher fat and more dense in calorie options. It's time to do this. I know she can do this.
Wean Day 5:
I was really proud of her at breakfast. 3 new foods presented to her and she tasted and repeated bites of each. Needs to up the intake but loved seeing the interest in each. She was able to enjoy the lil smokies sliced in half as well as in little bity pieces. For her peanut butter sandwich, she is taking bites out of a sandwich as well as tearing pieces off to put in her mouth. I showed her how to lick food off her index finger a long time ago and that has been a skill she likes practicing. Today she advanced to licking off her middle and ring finger at the same time. She has also discovered that if she drinks long and hard on the straw cup, and then squeezes the straw, it will squeal as air sucks back into the cup. We are making it a bit of a game to increase her drinking. Worked well this morning. she is also getting better at feeding herself from a spoon. She really likes to dip her spoon into the yogurt cup. But intake goes down once she does. She will still let me feed her with another spoon or the one she is playing with but then gets frustrated and decides she's had enough of this activity and food. She tried to drink from the yogurt cup at one point when she realized that was what I had put in her mouth and she wanted more. The chocolate chip cookie was fun because she was trying to put it on her new toddler fork and eat from the fork. It didn't work too well but when it didn't work, she would just pick up a piece and take a bite. This afternoon we had a friend over to watch her while I prepared a finger foods with dips picnic. She was too excited by the fun of a visitor so we moved to the highchair where she finally accepted some peanut butter after refusing so many things. After about a Tbsp of peanut butter on a spoon, she ate 2 oz of yogurt. You could tell the hunger had kicked in and that this food was easy to eat alot of the most quickly. The same thing happened at dinner. She ate almost 3 oz of yogurt after refusing or being frustrated by the process of picking up rice mixed with the veggies I had prepared earlier. She got to a very very frustrated point although kept eating the yogurt for a while. When we finished, she sat on the porch with Alan and very well coordinated eating some chocolate chip cookie (almost no crumbs...just cookie gone) while reading a book.
I don't have good summary notes of our first few days of this process. We basically slowly reduced how much formula we gave her through the tube by 30%, then 50% for a couple of days, then 70%. Today, we only gave her pedialyte to keep her hydrated. I began a very detailed chart the first day of the wean which keeps track of the foods I gave her, how much she ate, how much she liked/disliked them, how many pee vs poo diapers she had, how much formula via tube vs water by mouth she drank. There is a main planning page which pulls summary data from each daily tab. I send it to the doctors so they can know how she is doing as we go through the process. Yesterday, I began a descriptive summary of "thoughts" in addition to the factual information. It helps me remember the touchy feeling part of what is happening and kind of explains for the doctors why she might or might not have gotten what I had told them I planned to do.
I thought you all might like to be able to read the summary parts of it so you can keep up with how she is doing. The days are long and hard and involve quite a bit of fixing and cleaning up food. So the notes will be lacking in much structure. But you'll be able to hear some of what happened at least!
Wean Day 4:
she ate lots of snacky bits all day and the messes got so out of control that I couldn't mentally keep up with how much she ate of what and what the nutritional value was for each. We woke up at 5:45am with her newly placed NG hanging out…tired mommy by mid day. She did eat lots of goldfish and lots of peanut butter at dinner; fair amount of cheese consumption over the day as well as chocolate pediasure and chocolate shake cumulatively. I'm getting a little bit more worried as a mother simply because I have been so focused on getting her NG feeds perfect for so long. To not feed her is stressful. And I worry about not being able to make up for her hydration at night if she doesn't pick up her drinking during the day. She seems to drink the most after sleeping and in the evenings. 800ml is a lot to give her overnight without waking up simply to change her diaper. She finally has learned to sleep completely through the night despite her 11pm and 12am meds. I am pretty hopeful about tomorrow. I think it is time to make her eat all on her own. If anything, I will give her pedialyte during the day. Not formula. I have lots new food options for her tomorrow including higher fat and more dense in calorie options. It's time to do this. I know she can do this.
Wean Day 5:
I was really proud of her at breakfast. 3 new foods presented to her and she tasted and repeated bites of each. Needs to up the intake but loved seeing the interest in each. She was able to enjoy the lil smokies sliced in half as well as in little bity pieces. For her peanut butter sandwich, she is taking bites out of a sandwich as well as tearing pieces off to put in her mouth. I showed her how to lick food off her index finger a long time ago and that has been a skill she likes practicing. Today she advanced to licking off her middle and ring finger at the same time. She has also discovered that if she drinks long and hard on the straw cup, and then squeezes the straw, it will squeal as air sucks back into the cup. We are making it a bit of a game to increase her drinking. Worked well this morning. she is also getting better at feeding herself from a spoon. She really likes to dip her spoon into the yogurt cup. But intake goes down once she does. She will still let me feed her with another spoon or the one she is playing with but then gets frustrated and decides she's had enough of this activity and food. She tried to drink from the yogurt cup at one point when she realized that was what I had put in her mouth and she wanted more. The chocolate chip cookie was fun because she was trying to put it on her new toddler fork and eat from the fork. It didn't work too well but when it didn't work, she would just pick up a piece and take a bite. This afternoon we had a friend over to watch her while I prepared a finger foods with dips picnic. She was too excited by the fun of a visitor so we moved to the highchair where she finally accepted some peanut butter after refusing so many things. After about a Tbsp of peanut butter on a spoon, she ate 2 oz of yogurt. You could tell the hunger had kicked in and that this food was easy to eat alot of the most quickly. The same thing happened at dinner. She ate almost 3 oz of yogurt after refusing or being frustrated by the process of picking up rice mixed with the veggies I had prepared earlier. She got to a very very frustrated point although kept eating the yogurt for a while. When we finished, she sat on the porch with Alan and very well coordinated eating some chocolate chip cookie (almost no crumbs...just cookie gone) while reading a book.
6 months since transplant
It has been 6 months since transplant!
In the past few weeks, Clara scared us all with an illness that could only be seen in her lab work, and she recovered quickly.
My parents came to visit for a glorious 10 days. We all rejoiced in the normalcy of the visit relative to their previous visits during chemo, PICU, pre/post-transplant, and daily nausea. We had adventures to Muir Woods, San Francisco, Ridge Winery, and a local restaurant. We sipped wine every evening in our front courtyard after Clara went to bed. We grilled fabulous meals or ate miraculous meals concocted from nothingness by my mother when we didn't plan ahead. Clara showed the beginnings of toddling and learned how to smell flowers and pant like a dog and say "isateht" (It's a tent!) while hiding under a blanket with Mimi and saying "shhh" while placing a finger over Mimi's nose. She loved to snuggle her Popsy although continued to think him a puppy throughout the trip. Barking or panting each time we said his name. She grew up quickly while they were here and created quite a bond with them. We have had a couple of Skype video calls, and you can tell she remembers them. She really couldn't care that Alan and I were here as long as they were around. It is painful that they will be apart for so much of her early life. Perhaps we will see them even more frequently next year and during much better circumstances.
Their visit gave me quite a break. Although, I was so fearful it wasn't going to be enough and felt quite a bit of guilt for wishing I could have more. After they left, we stepped back into our routine well - and it became clear that Clara was ready for a new, big step. Eating. She is discovering the world of new flavors and textures and the feeling of satiation of hunger due to her own efforts to eat. She has shown outward signs of pride in this new independence. And it seems to be going hand in hand with the physical milestone of standing on her own which she is very close to mastering as well as walking on her own. She is now standing without the aid of a piece of furniture and will even begin walking and taking a few cautious steps to her next destination.
With all this excitement and the attention these developments require of me, I haven't blogged at all! But we do have some home videos posted which you can view by clicking on the "Clara's Home Videos" link on the right hand side of the blog anytime.
We are also very heavily involved in what is called a "Rapid Wean" as we take Clara off of NG tube nutrition and force her to learn hunger and that only she can fix it. She is doing very well, but we also have to be very careful of dehydration. As a result, I have developed quite an extensive charting system through excel which I send to the Drs each day. Each day involves a new tab where I journal a bit about how the day went. So many of you have expressed interest in how the wean is going and I hope to be able to use that part of her charting to update the blog and keep you all informed. We cannot wait to have Clara without an NG. She has had it for 10 of her 15 months of life. And we are close to being able to pull it out for good.
We love you all and thank you all for the continued support and interest in our amazing daughter. She is so full of love for life. We will keep you up to date once we have details on the 6 month bone marrow testing that they did on Wednesday this week. We should know more in 1 to 2 weeks.
In the past few weeks, Clara scared us all with an illness that could only be seen in her lab work, and she recovered quickly.
My parents came to visit for a glorious 10 days. We all rejoiced in the normalcy of the visit relative to their previous visits during chemo, PICU, pre/post-transplant, and daily nausea. We had adventures to Muir Woods, San Francisco, Ridge Winery, and a local restaurant. We sipped wine every evening in our front courtyard after Clara went to bed. We grilled fabulous meals or ate miraculous meals concocted from nothingness by my mother when we didn't plan ahead. Clara showed the beginnings of toddling and learned how to smell flowers and pant like a dog and say "isateht" (It's a tent!) while hiding under a blanket with Mimi and saying "shhh" while placing a finger over Mimi's nose. She loved to snuggle her Popsy although continued to think him a puppy throughout the trip. Barking or panting each time we said his name. She grew up quickly while they were here and created quite a bond with them. We have had a couple of Skype video calls, and you can tell she remembers them. She really couldn't care that Alan and I were here as long as they were around. It is painful that they will be apart for so much of her early life. Perhaps we will see them even more frequently next year and during much better circumstances.
Their visit gave me quite a break. Although, I was so fearful it wasn't going to be enough and felt quite a bit of guilt for wishing I could have more. After they left, we stepped back into our routine well - and it became clear that Clara was ready for a new, big step. Eating. She is discovering the world of new flavors and textures and the feeling of satiation of hunger due to her own efforts to eat. She has shown outward signs of pride in this new independence. And it seems to be going hand in hand with the physical milestone of standing on her own which she is very close to mastering as well as walking on her own. She is now standing without the aid of a piece of furniture and will even begin walking and taking a few cautious steps to her next destination.
With all this excitement and the attention these developments require of me, I haven't blogged at all! But we do have some home videos posted which you can view by clicking on the "Clara's Home Videos" link on the right hand side of the blog anytime.
We are also very heavily involved in what is called a "Rapid Wean" as we take Clara off of NG tube nutrition and force her to learn hunger and that only she can fix it. She is doing very well, but we also have to be very careful of dehydration. As a result, I have developed quite an extensive charting system through excel which I send to the Drs each day. Each day involves a new tab where I journal a bit about how the day went. So many of you have expressed interest in how the wean is going and I hope to be able to use that part of her charting to update the blog and keep you all informed. We cannot wait to have Clara without an NG. She has had it for 10 of her 15 months of life. And we are close to being able to pull it out for good.
We love you all and thank you all for the continued support and interest in our amazing daughter. She is so full of love for life. We will keep you up to date once we have details on the 6 month bone marrow testing that they did on Wednesday this week. We should know more in 1 to 2 weeks.
Friday, July 1, 2011
Day +170: Clara is recovering!
We just got her lab results, and it is good news!
Her white count is 4.4; up from 2.5.
Her ANC is 1700; up from 800.
The doctors are essentially no longer concerned about pursuing any further treatment and are trying to convince us to calm done and move forward with living outside a bubble.
I have asked for them to reinstate approval to taper her MMF on Monday per the original schedule. She looks so much better yesterday and today. And I assume the bumps are viral more now than ever before. So I want to get her off these immunosuppresants!!!
What great news as my parents arrive this evening. I'm feeling much better.
Thursday, June 30, 2011
Day +168: Clara is Sick
This post was started Wednesday evening:
We went into the hospital today for Clara's weekly lab appointment to check all her blood levels and electrolytes (these have been stable for a couple of months now) and also had her monthly IVIG infusion (immunoglobulin from the blood plasma of 1,000 people to provide her with the antibodies she isn't currently producing).
First, the bumps on her face and head finally have them concerned as they have spread from mainly being in her hair and hairline to looking like cradlecap throughout the top of her head, and dry, red, compact, itchy bumps (and sometimes almost like pimples or chicken pox on her nose) on her forehead, eyebrows, nose, upper lip and chin. It took two nurse practitioners and finally the attending to decide we should hold off on the taper of her MMF (which is scheduled for this coming Monday) until they see her next week. The attending that saw her today also saw her last week and was concerned that it was significantly more prominent/obvious from looking at her even across the room. I have been putting hydro-cortisone on her face to help hydrate if it is eczema or act as a steriod if it is truly the GVHD that has been suspected. What they saw yesterday was actually significantly better than about 5 days ago when I started putting the cream on her 2-3x/day. They want me to continue with the cream.
Second, we had a long discussion about how they made the decision to allow her to go to outpatient OT and a day trip to Napa/Sonoma (or anywhere else for that matter). They described her current immune status. Basically, once she passed Day +100, she passed the point at which she was at the greatest risk of life-threatening infection. This was great news to hear. We still have to be very cautious about all the things that they have talked about before. Those things aren't any less scary. She is still severely immuno-suppressed. However, they don't want her to live in a bubble. So, while she is still under isolation restrictions they are just a little on the more relaxed side of the continuum.
The hospital always called me later in the day regarding the results of her blood work and to clarify that we do not need to make any drug dose changes and to see if we have any questions. Her numbers have all been very solid and steady for a long while yet and her CBC has been rock solid as they say (her red cells, white cells and platelets).
Unfortunately, today they had bad news. Her white cell count is 2.5 down from 5.1 last week. Her ANC (absolute neutrophil count) is 800; down from ~3200. If you think back to 6 months ago, Clara had to have a 500 for 3 consecutive days to be allowed out of the hospital. In otherwords, she is at great risk. If she doesn't have neutrophils, she can't fight infection.
Most likely, she has an infection of some kind. This is why only her white count has decrease. Her red cells are still fine and her platelets have dipped from ~350 to 270. We have been assured that while that looks like a dip to us (we haven't seen her below 300 since her marrow was first producing platelets) 270 is completely within the realm of normal, healthy, platelet numbers.
Also possible is the leukemia is back. The nurse who called me with all of this information didn't really want to talk about that side of things as she is superstitious. I had to press her to explain somethings and that if she didn't want to talk about it for fear of "causing" Clara to relapse by speaking of it, she could forward me to an attending. She did discuss what I needed to know from the biology side and we are just hopeful that they are right - this is just an infection.
The fear is that just an infection can kill her. If she runs out of neutrophils to fight whatever this is, and we go to the hospital to get antibiotics and antifungals and such and it doesn't make her better, she could die.
SO, here is what we understand:
1) The IVIG that she got yesterday could actually be enough to help her fight whatever this is. Thank goodness it is a fresh dose of antibodies!
2) We are looking for actual signs of illness (fever, runny nose, cough, etc) before we have to take her to the hospital for further workup/treatment.
3) They are letting us bring her into the hospital Friday for follow up lab work only - just to see if her White Count and ANC have continued to decline or recover.
4) She is still allowed to do all the things they told us we could (eat outside at restaurants, go on day trips, etc). We just have to pack a thermometer to check for fever if we suspect one.
Here's the good news:
1) She doesn't look sick at all. In fact, last night she was so full of energy that I went to bed on a high because of how happy she was. She even decided she was so happy and healthy that she was walking between Alan and I as we sat on the floor. She took her first couple of steps on her own (kind of a falling couple of steps as she went from my arms to Alan's) and learned how to walk in a U-turn pattern as she would get to me or to Alan. She would say "gin" "gin" (again) each time she would reach one of us and as she would turn around to walk to the other.
2) This morning (Thursday) she looks fantastic. Her bumps are about 70% improved. Some are gone, others are less inflamed, she doesn't look nearly as dry. And she still obviously feels well.
3) We have NO intention of taking her out anywhere for fear of risking her getting sick on top of whatever she has. We will wait til we get the results from the lab work tomorrow. Perhaps the illness was actually her bumps being viral after all. And maybe the IVIG fixed it?
We will see. Stay tuned and thank you for your continued prayers!
We went into the hospital today for Clara's weekly lab appointment to check all her blood levels and electrolytes (these have been stable for a couple of months now) and also had her monthly IVIG infusion (immunoglobulin from the blood plasma of 1,000 people to provide her with the antibodies she isn't currently producing).
First, the bumps on her face and head finally have them concerned as they have spread from mainly being in her hair and hairline to looking like cradlecap throughout the top of her head, and dry, red, compact, itchy bumps (and sometimes almost like pimples or chicken pox on her nose) on her forehead, eyebrows, nose, upper lip and chin. It took two nurse practitioners and finally the attending to decide we should hold off on the taper of her MMF (which is scheduled for this coming Monday) until they see her next week. The attending that saw her today also saw her last week and was concerned that it was significantly more prominent/obvious from looking at her even across the room. I have been putting hydro-cortisone on her face to help hydrate if it is eczema or act as a steriod if it is truly the GVHD that has been suspected. What they saw yesterday was actually significantly better than about 5 days ago when I started putting the cream on her 2-3x/day. They want me to continue with the cream.
Second, we had a long discussion about how they made the decision to allow her to go to outpatient OT and a day trip to Napa/Sonoma (or anywhere else for that matter). They described her current immune status. Basically, once she passed Day +100, she passed the point at which she was at the greatest risk of life-threatening infection. This was great news to hear. We still have to be very cautious about all the things that they have talked about before. Those things aren't any less scary. She is still severely immuno-suppressed. However, they don't want her to live in a bubble. So, while she is still under isolation restrictions they are just a little on the more relaxed side of the continuum.
The hospital always called me later in the day regarding the results of her blood work and to clarify that we do not need to make any drug dose changes and to see if we have any questions. Her numbers have all been very solid and steady for a long while yet and her CBC has been rock solid as they say (her red cells, white cells and platelets).
Unfortunately, today they had bad news. Her white cell count is 2.5 down from 5.1 last week. Her ANC (absolute neutrophil count) is 800; down from ~3200. If you think back to 6 months ago, Clara had to have a 500 for 3 consecutive days to be allowed out of the hospital. In otherwords, she is at great risk. If she doesn't have neutrophils, she can't fight infection.
Most likely, she has an infection of some kind. This is why only her white count has decrease. Her red cells are still fine and her platelets have dipped from ~350 to 270. We have been assured that while that looks like a dip to us (we haven't seen her below 300 since her marrow was first producing platelets) 270 is completely within the realm of normal, healthy, platelet numbers.
Also possible is the leukemia is back. The nurse who called me with all of this information didn't really want to talk about that side of things as she is superstitious. I had to press her to explain somethings and that if she didn't want to talk about it for fear of "causing" Clara to relapse by speaking of it, she could forward me to an attending. She did discuss what I needed to know from the biology side and we are just hopeful that they are right - this is just an infection.
The fear is that just an infection can kill her. If she runs out of neutrophils to fight whatever this is, and we go to the hospital to get antibiotics and antifungals and such and it doesn't make her better, she could die.
SO, here is what we understand:
1) The IVIG that she got yesterday could actually be enough to help her fight whatever this is. Thank goodness it is a fresh dose of antibodies!
2) We are looking for actual signs of illness (fever, runny nose, cough, etc) before we have to take her to the hospital for further workup/treatment.
3) They are letting us bring her into the hospital Friday for follow up lab work only - just to see if her White Count and ANC have continued to decline or recover.
4) She is still allowed to do all the things they told us we could (eat outside at restaurants, go on day trips, etc). We just have to pack a thermometer to check for fever if we suspect one.
Here's the good news:
1) She doesn't look sick at all. In fact, last night she was so full of energy that I went to bed on a high because of how happy she was. She even decided she was so happy and healthy that she was walking between Alan and I as we sat on the floor. She took her first couple of steps on her own (kind of a falling couple of steps as she went from my arms to Alan's) and learned how to walk in a U-turn pattern as she would get to me or to Alan. She would say "gin" "gin" (again) each time she would reach one of us and as she would turn around to walk to the other.
2) This morning (Thursday) she looks fantastic. Her bumps are about 70% improved. Some are gone, others are less inflamed, she doesn't look nearly as dry. And she still obviously feels well.
3) We have NO intention of taking her out anywhere for fear of risking her getting sick on top of whatever she has. We will wait til we get the results from the lab work tomorrow. Perhaps the illness was actually her bumps being viral after all. And maybe the IVIG fixed it?
We will see. Stay tuned and thank you for your continued prayers!
Sunday, June 26, 2011
Trip to San Francisco!
We took Clara on her first adventure more than 20 minutes away from the hospital since August last year!!! We went to the Golden Gate Park where she got to see LOTS of cars, people and puppy dogs. The day ended great with her drinking chocolate shake from a straw like a PRO! And the ranch dressing on the sweet potato fries wasn't too bad either!
Didn't take a single picture...shame on us. We will get better at this adventuring out of the house soon.
Didn't take a single picture...shame on us. We will get better at this adventuring out of the house soon.
Wednesday, June 22, 2011
Clara has a boyfriend!
Our old college buddy, Matthew Bennett, and his newlywed wife, Christene, came for a visit. Clara fell in love. We had a hard time telling her he is now taken.
Monday, June 20, 2011
Big news! The "end" is in sight!
Clara and I went into the hospital today for her weekly checkup. I have been asking about several things for a while now and last week made sure to emphasize a few so that the issues would be discussed by the team, decided, and that I would finally get answers by today. I have those answers!
(Question #2)I also asked for permission to take Clara more than 20 minutes away from the hospital - for a day trip to Napa when my parents come for a visit in early July. The answer was yes! While she is still highly at risk for infection and illness, I am assuming this means they are relaxing the isolation restrictions. I was too excited to question whether or not this means we could also run errands (grocery store) or go into a restaurant etc because I am pretty sure that is all still off limits. I think they just know she is strong enough and that we are still mindful and cautious about what she is exposed to that they trust we won't go crazy. I'll have to ask for more details on that next week.
(Question #3) Clara is also finally allowed to go to OT. She has been making GREAT progress with what she and I are doing on our own. I can't wait to see what she does with some coaching from the feeding experts! Perhaps by the time she is needing less oral meds, we can pull the tube because she will be eating so well on her own!
- Clara's skin continues to get descriptors of "pristine" and "great." She continues to have bumps on her scalp, in her hairline, on her forehead, and recently in her eyebrows and on her eyelids. It has been responding well to lotion and so eczema is not out of the question. However, I think they really don't know what these bumps are, but truly don't think it is GvHD. I still have my concerns.
- She will be done with tapering 1 of her 2 immuno-suppressants (MMF) no later than August 28th but possibly as early as August 14th assuming she continues to do well and not show signs of GvHD.
- Once we are done with the MMF, we will begin tapering the 2nd immuno-suppressant (Prograf).
- The Prograf will be tapered by 10% each week which means we can expect to be done with all immuno-suppressant drugs around the end of October/beginning of November!
- Several things "happen" once we begin tapering the Prograf.
- We will no longer have to go into the hospital weekly (possibly only 1x/month).
- Her central line (this was Question # 1) can come out because we will be drawing labs so much less frequently. This is a procedure done under general anesthesia. So, they will draw a marrow sample at the same time to check for leukemia and for how much of her marrow is hers versus the donor's cells.
- She will require fewer electrolyte supplements and therefore fewer meds to give by mouth.
(Question #2)I also asked for permission to take Clara more than 20 minutes away from the hospital - for a day trip to Napa when my parents come for a visit in early July. The answer was yes! While she is still highly at risk for infection and illness, I am assuming this means they are relaxing the isolation restrictions. I was too excited to question whether or not this means we could also run errands (grocery store) or go into a restaurant etc because I am pretty sure that is all still off limits. I think they just know she is strong enough and that we are still mindful and cautious about what she is exposed to that they trust we won't go crazy. I'll have to ask for more details on that next week.
(Question #3) Clara is also finally allowed to go to OT. She has been making GREAT progress with what she and I are doing on our own. I can't wait to see what she does with some coaching from the feeding experts! Perhaps by the time she is needing less oral meds, we can pull the tube because she will be eating so well on her own!
Wednesday, June 15, 2011
NG tube weaning
I hope you all are enjoying actually hearing from us again. It has been fun having the time to blog here and there. I realized I had been avoiding blogging because I knew you all would like to see pictures and videos. The reality is: I haven't wanted to take pictures.
It was depressing for a long while, and still is sometimes, that Clara still has a tube taped to her face. There is so much "normal" to report in her development. But if I took pictures, the tape that I know how to look past most of the time stands out horribly and blocks half of the cute face that I see. When you want to brag about your daughter, and then are literally faced with the image of what she is still struggling with, it is hard. I know you all would say we don't care. And while I was proud of her, I was frustrated by how little progress I had made with her and her eating.
That has changed significantly over the past two weeks. Clara swallowed food for the first time two Thursdays ago. I had decided that, since we don't see OT and they keep telling me to just keep exposing her to new flavors and textures, I needed to actually get back to what many people know to be my MO and begin researching for myself to determine what steps needed to be taken to ensure progress.
I made several determinations. She wasn't as close to eating on her own as I thought (which relieved a large amount of pressure associated with "she's so close"). She was getting to a higher likelihood of having difficulty digesting table food the longer she stayed on a formula-only diet. She was not struggling with any of the aversions to food nor did I have concerns with her swallowing ability (at least not nearly as severe as what was described in what I read). The biggest piece: she needed to be in her highchair for every feeding (within reason) with food and/or eating utensils in front of her so that she would begin associating those things with fullness.
It began working. She has had some staple favorite foods for a while that she had seen enough times and that she had enjoyed gumming on. I continued to give them to her and add a new something here or there as she showed interest in what I was eating or simply to offer her diversity through foods that were similar in some ways to what she was familiar and comfortable with. I showed her how to paint with her food on her tray and then lick her fingers (she trusts her own finger more than a spoon coming at her face). We "painted" her fingers or a toy with a new food or new taste. We would gasp with surprise and then she would lick it.
In the past two weeks, I have continued offering her new foods and am having to spend less time praising her and actively encouraging her throughout every step of the meal. She may tire of a particular food and I will have to bring out another but she plays with food for a full 20-45 minutes 3-5 times a day. She gets excited about being put in her high chair. She says "na" if I offer her a banana. She loves the sight of an eggo waffle headed to the toaster. She can sign "all done." She loves strong flavors and doesn't like mealy textures like applesauce or oatmeal or too many dry crumbs in her mouth at once.
All in all, she is liking food. Slowly she is learning to swallow the food. Hopefully within a couple of weeks, she will be consistently eating and drinking enough that I am just providing supplemental formula based on what she didn't eat but was required calorie-wise for that feeding.
She is getting a little bit less camera shy and beginning to put on smiles for me instead of going stoic. Perhaps I will be able to pull out the video camera soon without her seeing and stopping whatever activity I was trying to capture. It is fun to share her with all of you and I look forward to doing so more and more.
It was depressing for a long while, and still is sometimes, that Clara still has a tube taped to her face. There is so much "normal" to report in her development. But if I took pictures, the tape that I know how to look past most of the time stands out horribly and blocks half of the cute face that I see. When you want to brag about your daughter, and then are literally faced with the image of what she is still struggling with, it is hard. I know you all would say we don't care. And while I was proud of her, I was frustrated by how little progress I had made with her and her eating.
That has changed significantly over the past two weeks. Clara swallowed food for the first time two Thursdays ago. I had decided that, since we don't see OT and they keep telling me to just keep exposing her to new flavors and textures, I needed to actually get back to what many people know to be my MO and begin researching for myself to determine what steps needed to be taken to ensure progress.
I made several determinations. She wasn't as close to eating on her own as I thought (which relieved a large amount of pressure associated with "she's so close"). She was getting to a higher likelihood of having difficulty digesting table food the longer she stayed on a formula-only diet. She was not struggling with any of the aversions to food nor did I have concerns with her swallowing ability (at least not nearly as severe as what was described in what I read). The biggest piece: she needed to be in her highchair for every feeding (within reason) with food and/or eating utensils in front of her so that she would begin associating those things with fullness.
It began working. She has had some staple favorite foods for a while that she had seen enough times and that she had enjoyed gumming on. I continued to give them to her and add a new something here or there as she showed interest in what I was eating or simply to offer her diversity through foods that were similar in some ways to what she was familiar and comfortable with. I showed her how to paint with her food on her tray and then lick her fingers (she trusts her own finger more than a spoon coming at her face). We "painted" her fingers or a toy with a new food or new taste. We would gasp with surprise and then she would lick it.
In the past two weeks, I have continued offering her new foods and am having to spend less time praising her and actively encouraging her throughout every step of the meal. She may tire of a particular food and I will have to bring out another but she plays with food for a full 20-45 minutes 3-5 times a day. She gets excited about being put in her high chair. She says "na" if I offer her a banana. She loves the sight of an eggo waffle headed to the toaster. She can sign "all done." She loves strong flavors and doesn't like mealy textures like applesauce or oatmeal or too many dry crumbs in her mouth at once.
All in all, she is liking food. Slowly she is learning to swallow the food. Hopefully within a couple of weeks, she will be consistently eating and drinking enough that I am just providing supplemental formula based on what she didn't eat but was required calorie-wise for that feeding.
She is getting a little bit less camera shy and beginning to put on smiles for me instead of going stoic. Perhaps I will be able to pull out the video camera soon without her seeing and stopping whatever activity I was trying to capture. It is fun to share her with all of you and I look forward to doing so more and more.
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