Thursday, October 27, 2011
I'm Gonna Love You Through It - Martina McBride
I heard this song on the radio today and it instantly brought me to tears. It reminded of the unconditional love and support I received from Nathan after my car accident in 2006. It wasn't a cancer diagnosis (which has to been one of the worst things to experience) but in some ways it was similar in terms of the years of surgeries and therapies that I faced as a result of the injuries I sustained. But Nathan was there, and as the song says, loved me through it, every single part of it. I made it through those years of pain and suffering and rehabilitation, in large part, because he was by my side to hold my hand and help me through it.
And when I got the call that Kelsie had CF, I called Nathan, and while I was barely able to speak through the tears, I told him what the doctor had said. He immediately dropped everything at work and drove straight home, keeping me on the phone the whole way. It has been so hard for both of us, but we have helped each other through the days of grief, fear, anger, and sorrow. Now faced with the chronic nature of Kelsie's disease, we don't know what lies ahead, but we will undoubtedly face some hard times as we watch our daughter suffer through the afflictions of sickness. But no matter what, I know that we will love and support one another through the tough times and will celebrate and laugh our way through the good times.
I also know that Kelsie will personally go through pain and frustration as a result of her CF but I will commit myself to doing anything I can to help her through it. And I will always make sure she knows:
"When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it."
And when I got the call that Kelsie had CF, I called Nathan, and while I was barely able to speak through the tears, I told him what the doctor had said. He immediately dropped everything at work and drove straight home, keeping me on the phone the whole way. It has been so hard for both of us, but we have helped each other through the days of grief, fear, anger, and sorrow. Now faced with the chronic nature of Kelsie's disease, we don't know what lies ahead, but we will undoubtedly face some hard times as we watch our daughter suffer through the afflictions of sickness. But no matter what, I know that we will love and support one another through the tough times and will celebrate and laugh our way through the good times.
I also know that Kelsie will personally go through pain and frustration as a result of her CF but I will commit myself to doing anything I can to help her through it. And I will always make sure she knows:
"When you’re weak, I’ll be strong
When you let go, I’ll hold on
When you need to cry, I swear that I’ll be there to dry your eyes
When you feel lost and scared to death,
Like you can’t take one more step
Just take my hand, together we can do it
I’m gonna love you through it."
Tuesday, October 25, 2011
8 months!
Kelsie is 8 months old yesterday! I can't believe how time flies!
Weight: 18lbs 12oz
Length: 27 inches
Eating: breast milk and solids, she is still eating 5 times during the day (7a, 10a, 1p, 4p, 7p) and then once in the middle of the night. The volume per feeding seems to vary making it hard to know how much to put in her bottles when I'm at work. But lately, she has been taking 5oz with all 3 of her bottle feedings on days that I work. (which is crazy because she used to take 6-7 oz at 4 months of age and she was also sleeping through the night at that time too!) She is definitely satisfied with the 5 oz though and if she takes 5oz with all 6 feedings, she would be getting 30oz per day which is good for her age. I would love it if she would start taking more during the day so she could drop that night feeding but I don't know if that's going to happen anytime soon.
Sleep: Shes goes to bed between 7-8 most nights and gets up @ 7 or 7:30 She is still waking up at night, lately it's been a lot. She eats just once but the other times she just wakes up crying and one of us either runs in there and gives her the paci or I have to pick her up. I think the brace has a lot to do with it. She can't move around like she wants to and just can't seem to get comfortable. The brace also squishes her diaper causing pee to soak through her pajamas, so I know that isn't comfortable either. Ahhh the brace... I still can't stand it! Last night I tried putting her to sleep on her belly again and she actually slept all night! Well, she woke up at 5:30 but fell back asleep and I didn't have to feed her.
Development: Crawling, pulling to stand, will stand up while holding your hands for a minute or more, playing with her hands and fingers more, bangs blocks together, brings her hands together like she is clapping, laughs all the time, smiles or laughs when she sees pictures or video of herself, and smiles when mommy, daddy, or any of her other favorite people come around, "talking" in syllables, putting different sounds together, imitates noises we make, makes happy sounds when she is excited and waves her arms and kicks her legs, reaches for people when she wants them to hold her, still no teeth, no "mama" or "dada"... I'm sure I will think of more things that I'll have to add later. :)
Oh, so after I posted this I came home to learn that she said "dadadada" today. Its more of a whisper when she is moving her mouth up and down but still sounds like "dadadadada". After bath tonight, Nathan and I were chasing her naked butt around the bed to get her pj's on, and she said a big "da da" outloud. Such a proud moment for her daddy right now. :) (even if it doesn't really mean anything yet)
Weight: 18lbs 12oz
Length: 27 inches
Eating: breast milk and solids, she is still eating 5 times during the day (7a, 10a, 1p, 4p, 7p) and then once in the middle of the night. The volume per feeding seems to vary making it hard to know how much to put in her bottles when I'm at work. But lately, she has been taking 5oz with all 3 of her bottle feedings on days that I work. (which is crazy because she used to take 6-7 oz at 4 months of age and she was also sleeping through the night at that time too!) She is definitely satisfied with the 5 oz though and if she takes 5oz with all 6 feedings, she would be getting 30oz per day which is good for her age. I would love it if she would start taking more during the day so she could drop that night feeding but I don't know if that's going to happen anytime soon.
Sleep: Shes goes to bed between 7-8 most nights and gets up @ 7 or 7:30 She is still waking up at night, lately it's been a lot. She eats just once but the other times she just wakes up crying and one of us either runs in there and gives her the paci or I have to pick her up. I think the brace has a lot to do with it. She can't move around like she wants to and just can't seem to get comfortable. The brace also squishes her diaper causing pee to soak through her pajamas, so I know that isn't comfortable either. Ahhh the brace... I still can't stand it! Last night I tried putting her to sleep on her belly again and she actually slept all night! Well, she woke up at 5:30 but fell back asleep and I didn't have to feed her.
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| Woke up with my hair a mess and feeling good! :) hehe |
Oh, so after I posted this I came home to learn that she said "dadadada" today. Its more of a whisper when she is moving her mouth up and down but still sounds like "dadadadada". After bath tonight, Nathan and I were chasing her naked butt around the bed to get her pj's on, and she said a big "da da" outloud. Such a proud moment for her daddy right now. :) (even if it doesn't really mean anything yet)
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| I want to go outside! |
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| I just want to stand up and walk mommy! |
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| Nana said she walked in from the kitchen today and found Kelsie like this. Haha. It makes me laugh to see those little eyes peeking over. |
Sunday, October 23, 2011
Sleepy Sunday
We had a good day today even though we were all pretty tired. I worked until midnight last night, got home and helped Nathan put kelsie's brace on, which woke her up. I then had to feed her and get her back to sleep and then get the brace back on. But for whatever reason, she was so restless, and just didn't sleep well all night. So that meant neither did we. And after very little sleep, we wanted nothing more than to sleep in, but of course Kelsie was up and at em at 7:30 as usual. So I got maybe 3 hours of good uninterrupted sleep. But I still made it through the day. We went to church, went out to lunch, made a couple more stops, came home and spent some time outside and then cooked dinner. Kelsie only took 2 short naps and was exhausted by the time evening rolled around. So I fed her early at 6:30 and she fell asleep eating. Passed out as you can see from the picture!
Of course I should have taken advantage of it and gone to bed early myself but that is my time to get the things done I can't do while she is awake. And I am currently doing chest PT with one hand and typing with the other. I can now blog from my new handy little phone making the art of multitasking a little easier on this busy bee of a mom! :)
Of course I should have taken advantage of it and gone to bed early myself but that is my time to get the things done I can't do while she is awake. And I am currently doing chest PT with one hand and typing with the other. I can now blog from my new handy little phone making the art of multitasking a little easier on this busy bee of a mom! :)
Friday, October 21, 2011
CF News
There are some exciting new advancements in pharmeceutical development for CF and it is so encouraging to read about this research coming down the pipeline in the search for a cure. We will continue to pray that, one day, something will be found to treat and cure Kelsie's form of CF. By the way, she has the most common form of CF with 2 copies of the delta F508 mutation (the one mentioned at the end of the 2nd article.)
Wall Street Journal: “At Last, Cystic Fibrosis Drugs Seem Near”
October 20, 2011
Drug makers are edging closer to new treatments for cystic fibrosis that could stop the destructive impact of the disease, says an article in The Wall Street Journal today.
"We really believe with these new drugs that we should be able to add decades to the lives of patients in a very short period of time," Robert J. Beall, Ph.D., president and chief executive of the Cystic Fibrosis Foundation, says in the article.
The drug that’s furthest along is a pill from Vertex Pharmaceuticals, which on Wednesday filed for regulatory approval of its drug Kalydeco (VX-770). If approved, it will be the first drug on the market that targets the underlying cause of CF.
The CF Foundation played a significant role in the development of the potential drug, which is for people age 6 and older who carry at least one copy of the G551D mutation of cystic fibrosis.
The story also highlights 8-year-old Capri Faulk, who has CF and participated in the Kalydeco clinical trials. Since starting on the medicine in 2009, she has added 24 pounds to her 49-pound frame, and can play outside with her brother and sister without getting exhausted, her mother Nicole Faulk says in the article.
"I had hopes and dreams for her, and I was scared they would be robbed from her and from me" until the new drug came along, she said.
Link to Wall Street Journal article
Vertex Submits Application to FDA for Approval of VX-770 – First Potential Drug to Target Underlying Cause of Cystic Fibrosis
October 19, 2011
Vertex Pharmaceuticals, Inc., announced today it has submitted an application to the U.S. Food and Drug Administration for a potential new CF therapy, VX-770 — under its new proposed trade name, KALYDECO™.
If approved, it will be the first drug on the market that targets the underlying cause of cystic fibrosis. Therapies available to people with CF to date only treat symptoms of the disease.
The company is seeking approval for the drug in people with cystic fibrosis age 6 and older who carry at least one copy of the G551D mutation of cystic fibrosis.
KALYDECO (kuh-LYE-deh-koh) was discovered in a collaboration between Vertex and the Cystic Fibrosis Foundation, which provided substantial scientific, financial and clinical support throughout the development process.
“The CF Foundation is thrilled that KALYDECO is on track for possible FDA approval in 2012,” said Robert J. Beall, Ph.D., President and CEO of the CF Foundation. “This is a significant step forward in our collaboration with Vertex and is further validation of the CF Foundation’s drug development strategy. We remain committed to accelerating the development of similar targeted medicines that will benefit all people with cystic fibrosis.”
Vertex has asked the FDA for priority review of the potential drug, which, if granted, could shorten the review from 10 to 6 months. The FDA grants priority review status for several reasons, including in situations where a potential drug is considered a major treatment advance.
Results released earlier this year from Phase 3 clinical trials of KALYDECO in people with the G551D mutation of CF showed that those receiving the drug had remarkable and sustained improvements in lung function and other key symptoms of the disease, compared with those on placebo.
As FDA review of the potential drug gets underway, Vertex has set up a program to provide KALYDECO to people age 6 and older with the G551D mutation who are in critical medical need and could benefit from the treatment prior to potential approval.
The expanded access program is designed for people with CF who have highly limited lung function and meet other criteria. (Information about the program is available at CF Foundation-accredited care centers.)
KALYDECO is currently being evaluated in combination with another oral drug in development, VX-809, in people with the most common mutation of CF, Delta F508.
Vertex plans to begin the second part of the Phase 2 KALYDECO and VX-809 clinical trial this month and will evaluate the two drugs over a longer period of time.
Wall Street Journal: “At Last, Cystic Fibrosis Drugs Seem Near”
October 20, 2011
Drug makers are edging closer to new treatments for cystic fibrosis that could stop the destructive impact of the disease, says an article in The Wall Street Journal today.
"We really believe with these new drugs that we should be able to add decades to the lives of patients in a very short period of time," Robert J. Beall, Ph.D., president and chief executive of the Cystic Fibrosis Foundation, says in the article.
The drug that’s furthest along is a pill from Vertex Pharmaceuticals, which on Wednesday filed for regulatory approval of its drug Kalydeco (VX-770). If approved, it will be the first drug on the market that targets the underlying cause of CF.
The CF Foundation played a significant role in the development of the potential drug, which is for people age 6 and older who carry at least one copy of the G551D mutation of cystic fibrosis.
The story also highlights 8-year-old Capri Faulk, who has CF and participated in the Kalydeco clinical trials. Since starting on the medicine in 2009, she has added 24 pounds to her 49-pound frame, and can play outside with her brother and sister without getting exhausted, her mother Nicole Faulk says in the article.
"I had hopes and dreams for her, and I was scared they would be robbed from her and from me" until the new drug came along, she said.
Link to Wall Street Journal article
Vertex Submits Application to FDA for Approval of VX-770 – First Potential Drug to Target Underlying Cause of Cystic Fibrosis
October 19, 2011
Vertex Pharmaceuticals, Inc., announced today it has submitted an application to the U.S. Food and Drug Administration for a potential new CF therapy, VX-770 — under its new proposed trade name, KALYDECO™.
If approved, it will be the first drug on the market that targets the underlying cause of cystic fibrosis. Therapies available to people with CF to date only treat symptoms of the disease.
The company is seeking approval for the drug in people with cystic fibrosis age 6 and older who carry at least one copy of the G551D mutation of cystic fibrosis.
KALYDECO (kuh-LYE-deh-koh) was discovered in a collaboration between Vertex and the Cystic Fibrosis Foundation, which provided substantial scientific, financial and clinical support throughout the development process.
“The CF Foundation is thrilled that KALYDECO is on track for possible FDA approval in 2012,” said Robert J. Beall, Ph.D., President and CEO of the CF Foundation. “This is a significant step forward in our collaboration with Vertex and is further validation of the CF Foundation’s drug development strategy. We remain committed to accelerating the development of similar targeted medicines that will benefit all people with cystic fibrosis.”
Vertex has asked the FDA for priority review of the potential drug, which, if granted, could shorten the review from 10 to 6 months. The FDA grants priority review status for several reasons, including in situations where a potential drug is considered a major treatment advance.
Results released earlier this year from Phase 3 clinical trials of KALYDECO in people with the G551D mutation of CF showed that those receiving the drug had remarkable and sustained improvements in lung function and other key symptoms of the disease, compared with those on placebo.
As FDA review of the potential drug gets underway, Vertex has set up a program to provide KALYDECO to people age 6 and older with the G551D mutation who are in critical medical need and could benefit from the treatment prior to potential approval.
The expanded access program is designed for people with CF who have highly limited lung function and meet other criteria. (Information about the program is available at CF Foundation-accredited care centers.)
KALYDECO is currently being evaluated in combination with another oral drug in development, VX-809, in people with the most common mutation of CF, Delta F508.
Vertex plans to begin the second part of the Phase 2 KALYDECO and VX-809 clinical trial this month and will evaluate the two drugs over a longer period of time.
Baby proof
Now that Kelsie is on the move, we are faced with the challenge of babyproofing our house. We looked at the indoor play yards to fence her in but they are expensive, bulky, an eye sore, and just not entirely practical. There are stationary entertainers and playpens but she cant spend the whole day in those or she wouldn't have the chance to move around and work on her development. And we don't really have a space that needs a gate at the moment. As long as I keep her in my sight, at least. Thankfully, there is a big open area between the kitchen and living room so I can just spread out some toys out and keep my eye on her. When she gets out of my sight, I just go move her back to where I can see her. This works pretty well most of the time. Of course the most important thing we have to do is keep the area clean and free of danger. She is certainly reminding us of what needs to be put away or modified!
She has been trying to pull up on furniture all week and she has succeeded. She will even take several steps when she is standing up holding my hands.
I just can't believe how fast she is growing up! I am trying to just soak in all of these little moments and milestones!
She has been trying to pull up on furniture all week and she has succeeded. She will even take several steps when she is standing up holding my hands.
I just can't believe how fast she is growing up! I am trying to just soak in all of these little moments and milestones!
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| Look mom, I pulled up all by myself! |
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| She pulled hard to get those bags! And look at that balance! I saved her before she fell backwards! |
Wednesday, October 19, 2011
CF 8 month check up
Kelsie went for her 8 month CF follow up on Wed and everyone was just so pleased and impressed with how well she is doing. She weighed 18lbs 12oz which is 75th%. Her length is 50th% making her weight for length 78th% which, to our surprised, is even better than it was last time. The doctor and dietician are just so surprised by her amazing growth. Everything else on exam looked good too. And lungs are clear. We know God is taking care of her little body and we are so thankful and give Him praise for her health so far. Nothing else in terms of treatment changed so we will just keep on truckin along with what we are doing and pray that we make it through this cold and flu season without any problems!
Tuesday, October 18, 2011
Just another manic Monday
Since learning to crawl and stand Kelsie has developed this new little personality about her. She is all over the place and doesn't want to sit still anymore. When i try to put her to sleep, she just wants to sit up and fidget, reach for everything, play with my face, my hair, anything except sit still. She also has learned that when she cries for me and I don't rush to pick her up, that she can just crawl to me. And she has developed quite the new "cry" that sounds more like she is just mad and throwing a fit. Anyway because she has been such a handful the past 5 days, I decided I had to get out of the house yesterday. So we went to the mall and as usual I came home more tired than when I left. But we enjoyed it nonetheless.
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| on the move! |
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| i pull my hair when i'm stressed! mom hates this habit! |
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| I'm getting so big |
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| So proud of myself! Standing up holding mommy's hand. |
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| Hey daddy, whats up? |
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| Just shopping with mommy |
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| my sweet girl. <3 |
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| Sitting out by the fountain, I ate lunch while she fell asleep. |
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Monday, October 17, 2011
My resistant napper
Oh the past few days have been rough!! Since learning to crawl, Kelsie has decided she will protest falling asleep to the best of her ability! In fact the only way I have been able to get her to sleep is by driving her around or nursing her to sleep. So it's just been all around frustrating and exhausting! Don't get me wrong, while exhausting, its also been a lot of fun watching her succeed at reaching these big milestones and discover the new things she can do. But the sleep issues have just left me to wonder...
Is she trying to drop a nap but can't quite figure it out? I think this is most likely. And since crawling is just so exciting, maybe she just doesn't want to sleep because shes afraid she will miss something - sleep? C'mon mom, it's so much more fun to explore!
But then there are those other unknowns that make me worry. I mean, it's not her typical, I don't want to sleep cry.
So is she sick? She has been sounding congested lately and has been pulling at her ears - but maybe she is just pulling at them more because she is so tired, she does that sometimes too. Temp? 99.6 yesterday but nothing more than that.
Or maybe it's her stomach, she was constipated for a couple of days, then has been gassy and having a lot of loose stools for the last couple of days.
Maybe she isn't absorbing as well and we need to go up on her enzyme dosage?
And she got her first diaper rash too, so maybe that has something to do with it. She screamed when I wiped it the other night, and it really seemed to be bothering her. Clearing up now though.
What if she isn't getting enough milk and is just hungry? Needing more calories because of how many she is burning off everyday now. I can't really just try to feed her anytime she is fussy though, because she would end up overdosed on enzymes.
We haven't been doing a great job of getting her full extra dose of salt in her every day (1/4 tsp of salt is a lot for a baby) so what if her sodium is low and she is feeling more dehydrated and thirsty - ok, I know that is irrational, we've got wet diapers and slobber, so yes, she's hydrated.
So maybe she is teething? I don't see or feel anything but still possible.
Maybe the hip brace has caused poor sleep associations? Since we put in on her after she has fallen asleep, maybe she remembers waking up uncomfortably restrained and is now afraid to fall asleep.
Or maybe I am just a first time mom who worries about all these little things? Yeah, I think that's definitely part of it!
Regardless, I know it will pass eventually!
Is she trying to drop a nap but can't quite figure it out? I think this is most likely. And since crawling is just so exciting, maybe she just doesn't want to sleep because shes afraid she will miss something - sleep? C'mon mom, it's so much more fun to explore!
But then there are those other unknowns that make me worry. I mean, it's not her typical, I don't want to sleep cry.
So is she sick? She has been sounding congested lately and has been pulling at her ears - but maybe she is just pulling at them more because she is so tired, she does that sometimes too. Temp? 99.6 yesterday but nothing more than that.
Or maybe it's her stomach, she was constipated for a couple of days, then has been gassy and having a lot of loose stools for the last couple of days.
Maybe she isn't absorbing as well and we need to go up on her enzyme dosage?
And she got her first diaper rash too, so maybe that has something to do with it. She screamed when I wiped it the other night, and it really seemed to be bothering her. Clearing up now though.
What if she isn't getting enough milk and is just hungry? Needing more calories because of how many she is burning off everyday now. I can't really just try to feed her anytime she is fussy though, because she would end up overdosed on enzymes.
We haven't been doing a great job of getting her full extra dose of salt in her every day (1/4 tsp of salt is a lot for a baby) so what if her sodium is low and she is feeling more dehydrated and thirsty - ok, I know that is irrational, we've got wet diapers and slobber, so yes, she's hydrated.
So maybe she is teething? I don't see or feel anything but still possible.
Maybe the hip brace has caused poor sleep associations? Since we put in on her after she has fallen asleep, maybe she remembers waking up uncomfortably restrained and is now afraid to fall asleep.
Or maybe I am just a first time mom who worries about all these little things? Yeah, I think that's definitely part of it!
Regardless, I know it will pass eventually!
Friday, October 14, 2011
New milestones!
Kelsie has officially mastered crawling this week and now she is on the move! She started taking a few alternating "steps" with hands and knees on Monday, and she has taken a few more at a time each day. Today she is pretty proficient with it and already moving around rather quickly! And she is learning how to pull to stand up too and is trying to pull up and climb on everything. She even pulled up holding my hands today and took about 3 steps! This girl will be walking before we know it!
Wednesday 10/12
Today, Friday 10/14 - a lot of progress in 2 days!
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| I went in to her room after she woke up from her nap and this is how I found her |
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| I can stand up too |
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| Yes, its a long way down, so please don't decide to get out |
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| What'd I do? |
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| On the move and pulling up on everything |
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| Just having fun with mommy :) |
Some more favorite pictures from the week:
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| One of her funny faces :) |
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| LOVE this face!!!! |
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| I think she's outgrown this mat, haha, or maybe can just use it as a fun tent now? |
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| Ah, yes, I made it out! |
Monday, October 10, 2011
Sleeping with the abduction brace
Now that Kelsie is in another hip abduction brace, we have had to figure out the sleeping situation all over again. The first few nights were definitely an adjustment for all 3 of us. Obviously, it is very binding and restrictive for Kelsie, limiting her ability to toss and turn in her sleep as she is so accustomed to. She has always been a side or belly sleeper, so just getting used to sleeping on her back is an adjustment in and of itself. And add to that trying to sleep in a hard piece of plastic with your legs spread apart...yeah, it just doesn't sound very inviting for a restful nights sleep.
So the first 3 nights with the brace, she ended up in our soft, cushy bed. She hasn't been able to fall asleep with the brace on, so we have just left it off until after she is sound asleep and chest PT has been done (because it is easier to hold her and pound on her back without it on anyway). For the first 3 nights, each time we laid her down after putting on the brace, she would try to roll over, realize she couldn't, wake up and start crying. So we would bring her to our bed because we thought it would feel more comfortable for her, and we would be there to soothe her back to sleep when she woke up. And she actually slept ok as long as she was in our bed, but neither of us wanted to make a habit of that, so we contemplated how to help her sleep in her crib! Yesterday we went to Babies R Us in search of something to make her crib mattress a little softer and more supportive. Of course, they don't really sell anything like that because of the SIDS risk. So I came up with the idea of putting her contoured changing pad in her crib. We added a little more cushion by putting her old bassinet "mattress" on top of that and then covering it up with the cover. This actually seemed to work REALLY well! We put the brace on right after she fell asleep last night at 7pm and she slept until 4am, woke up and ate, was back asleep within 15 minutes, then slept until 7am. And this was the first night we didn't take the brace off for chest PT or for her feeding. Yay us. :) We're gettin the hang of this...
Another big part of this was that we were able to put her back her sleep sack. She has been sleeping in these sleep sacks since she outgrew the swaddle mes and I just love them! I certainly cannot sleep without my covers and this kind of serves the same purpose for her. We bought the next size up (sz Lg) and it fits right over the brace! So exciting! And with the sack on, the brace is covered, making it so much easier for me too. Before, the exposed velcro on the back was very scratchy when I tried to hold her and it stuck to everything! And it simply covers it up so I don't have to see how pitiful it looks on my baby! Its still harder to hold her because the back of it is so hard and bulky, but the sack makes it easier.
Doing chest PT, book in hand. I had her in this position doing her side (we have to do both sides, her back and the front of her chest to help clear the secretions from each area of the lung). And as a side note, this is the only time in my day where I actually get to read! I can pat with one hand, and hold a book in the other. :)
Here the sleep sack is unzipped and you can see her poor leg sticking straight up in the air. But she obviously doesn't seem to mind...out cold!
We're hoping for another good night! So far, so good. She's been asleep with the brace on since 7:30. I was so frustrated with the brace the first few nights but I know I have to get used to it. She has to wear for at least 4 more months, after all. And as much as I hate it, I am going to make sure she wears it like she is supposed to. Its the only thing we can do to help prevent her from having surgery. That, and pray. Pray that her hip heals and grows like it needs to!
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| Here you can see how the brace looks from the back. This was the 2nd night, she woke up once, wanting to roll over and Nathan was able to flip her without waking her up. She slept ok like this until she woke up to eat and then wouldn't go back to sleep. The next time he tried to put her on her stomach, she woke up. |
So the first 3 nights with the brace, she ended up in our soft, cushy bed. She hasn't been able to fall asleep with the brace on, so we have just left it off until after she is sound asleep and chest PT has been done (because it is easier to hold her and pound on her back without it on anyway). For the first 3 nights, each time we laid her down after putting on the brace, she would try to roll over, realize she couldn't, wake up and start crying. So we would bring her to our bed because we thought it would feel more comfortable for her, and we would be there to soothe her back to sleep when she woke up. And she actually slept ok as long as she was in our bed, but neither of us wanted to make a habit of that, so we contemplated how to help her sleep in her crib! Yesterday we went to Babies R Us in search of something to make her crib mattress a little softer and more supportive. Of course, they don't really sell anything like that because of the SIDS risk. So I came up with the idea of putting her contoured changing pad in her crib. We added a little more cushion by putting her old bassinet "mattress" on top of that and then covering it up with the cover. This actually seemed to work REALLY well! We put the brace on right after she fell asleep last night at 7pm and she slept until 4am, woke up and ate, was back asleep within 15 minutes, then slept until 7am. And this was the first night we didn't take the brace off for chest PT or for her feeding. Yay us. :) We're gettin the hang of this...
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Here the sleep sack is unzipped and you can see her poor leg sticking straight up in the air. But she obviously doesn't seem to mind...out cold!
We're hoping for another good night! So far, so good. She's been asleep with the brace on since 7:30. I was so frustrated with the brace the first few nights but I know I have to get used to it. She has to wear for at least 4 more months, after all. And as much as I hate it, I am going to make sure she wears it like she is supposed to. Its the only thing we can do to help prevent her from having surgery. That, and pray. Pray that her hip heals and grows like it needs to!
Thursday, October 6, 2011
Fall Festival
We took Kelsie to our hometown Asheboro Fall Festival on Sunday. My sister went with us and we had such a good time. We spent our time trying to pick out the best food and perusing the vast homemade merchandise on display from the various local vendors. Kelsie absolutely loved it! She was outside AND around lots of people, both of which make her very happy. She even managed to fall asleep in the stroller (even though it was her feeding time) despite being in a noisy crowd of people. And then she slept the whole way home. Some days are just good like that. :) The adults had fun too. And Nathan and I even topped it off with some fried oreos before we left. I love fall.
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| Fried oreos are actually pretty amazing- its combination of 2 of my favorites, funnel cakes and oreos |
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| My sweetheart |
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