So I feel really bad, and it's been eating at me for awhile now. Sadly, I am just now able to sit down and write about it.
In my last post, I put in there that we met another little girl, Bella and her mom Courtney. Please know that talking and meeting another family that had OI was very beneficial. We were able to ask questions that a doctor or nurse couldn't answer without living with OI. For example, Caroline is slowly starting to eat solid food, with that comes some nasty diapers. Well according to everything we have read, we shouldn't grab Caroline by the ankles to change her diaper. Well trust me when I tell you that it sucks. It can be very dirty to say the least. So I asked Courtney what she did. And she said, that as she learned Bella's strengths and weaknesses she was able to grab 1 ankle to at least move it out of the way. So I have recently started doing that with Caroline. Not yanking or pulling up. No way could I do that, but I can at least move her ankle so I can avoid some messiness. I also asked Courtney about picking Bella up. Remember we have been told we can only pick her up behind her head and under rear. Well Courtney agreed that it was close to impossible sometimes to do that. So what she would do (of course, this is all as you learn your child's strengths and weaknesses) is put her arms around Bella's chest, not under her arms. We have started doing that with Caroline as well. Of course, we aren't allowing everyone to do this, because some people don't know their own strength. If we were to squeeze to hard around her chest, we could possibly break a rib and puncture a lung. That could be catastrophic. I asked her basic questions. Like does she play during recess? YES. Does she go on the monkey bars? YES. Does she ride a bike? YES (with training wheels and with someone with her at all times) Does she take tap/ballet? YES. Do they have a 2 story house? YES. Does she swim? YES, everyday. (They live in Southern FL, so it's possible everyday.) How did she learn to crawl? Walk? How did you let her do the everyday things that others don't have to constantly worry about? You name it, I probably asked it. So as you can see talking with Courtney and meeting Bella was very fortunate for us. Sadly, seeing her use a walker and hearing about her wheel chair and fractures was very disheartening, and very real. Especially when Dr.Marinin told us that Caroline was also Type IV. (We are still waiting on skin biopsy results, to give us more info on the severity.) I never thought of wheel chairs or walkers. Yes, I thought of braces and crutches, but never anything to the extreme of a wheel chair.
Whoah I feel better getting that off my chest. I really didn't want to sound ungrateful for meeting someone else that has OI. It was very educational and eye opening!
We did get Caroline's DEXA scan results back this week. We were floored and shocked. One would think by now nothing would scare us anymore, but then you get that call and your heart just drops. Caroline's score was -5. What does this mean? Well base line is 0. She is compared to other 5 1/2 month old females. -7 is most severe. So she is borderline severe, but more moderate. What do we do with this info? Nothing. It's pretty much just an FYI. DEXA scan measured her bone density. Caroline has osteoporosis, that pretty much sums it up. Once she gets older, we could possibly give her some of the research drugs and maybe the score would decrease, but it would not decrease her fractures, she would still have OI. So what's the point? Web and I have decided to table the discussion until she at least qualifies for the drug, and that's not until she is at least 2 years old.
Also as of now, we still do not have a tooth. I know most moms get excited when this happens, but I am petrified and don't want it to happen. I don't want brittle teeth! But I do know that we have so much to be grateful for! If I have learned anything this week, it's that we have a healthy, happy, alive child!!
Sunday, April 25, 2010
Sunday, April 18, 2010
NIH
Well we are back. It was quite the experience! Let me start off by saying that Caroline is awesome on a plane! She couldn't have been better and we had nothing to worry about! She took the bottle during take off and landing and didn't cry or fuss. I think the fellow passengers on the flights were just as happy as we were!
The Children's Inn at NIH is great! This is where we stayed and they have done such a great job with the facility. The whole campus for that matter is so nice. The grounds are awesome, and it was so nice to take a walk around the campus when we 1st got there to unwind. There are sidewalks everywhere, a fantastic playground for kids, and tons of activities for children. Our 1st night they had movie night and gardening night. The kitchens are updated, laundry rooms have nicer washer and dryers than our own home! And all of the facilities are free for your use. A lot of the people that stay at the Inn are there for weeks if not months, and I am sure they appreciate the ammentities. HOWEVER, if we could change one thing it would be the rooms. The beds are in desperate need of being replaced. As well as the linens for the bed and the towels. I don't think Web and I slept at all during the 1st night and the 2nd night we were so emotionally spent I think we maybe got an hour or 2. I already know where we will be making our 2010 tax deduction, directly to the Children's Inn. It is such a phenomenal place and the families deserve better beds!
Ok now to the nitty gritty. Our visit with the doctors. Every doctor, nurse, tech, volunteer was extremely nice. They know that everyone that walks into the hospital is there for one reason and that's for their loved one to get the best care possible. We were immediately greeted with kindness and everyone showed us where to go. We started at 7:30 and went nonstop.
The good news, Caroline is STRONG! We met with the physical therapist, Holly and Dr Paul. They pulled, twisted, all of Caroline's limbs and they were so happy with her! On a scale of 1-10, she scored 7-9 on every muscle group! They were shocked that she could hold her head up, sit up (with assistance) and had great neck strength. She still has a way to go, but again they were so happy with how she could pull herself up while on her tummy. Caroline showed off as well! The day of her appt she was able to touch her toes, right arm to right leg. Not quite the left, Holly showed us an exercise to practice and as of now, she can grab her left toes with her left arm! Huge! She can also put her right foot in her mouth! Great milestones! Holly showed us more exercises and told us that the water will be the best exercises for Caroline. We were even given an xxxsmall vest to use in the water. It's pretty darn cute! Good thing is we can do a lot of the exercises in the bathtub for now. Because we don't have a pool, or a membership to a pool! It's on our to do list!
Not so good news, Sweet Caroline has Type IV OI. This was not what we wanted to hear and it totally took us by surprise. We were expecting to hear she was mild Type I. Caroline had a skin biopsy done and we will be told if her Type IV is mild, moderate, severe. So what's the difference? Well in laymans terms, Type I=good quality of collagen, less quantity. Type IV=poor quality of collagen, normal quantity.
Unfortunately, or fortunately, however you want to look at it. We shared a room with a 4 year old little girl, who has OI and her mom. Bella has Type IV OI on the more moderate to severe side. In her 4 short years, she has had 22 KNOWN fractures, and of those fractures the majority are her femur bones. She uses a walker, and sometimes a wheel chair. But her mom lets her lead a somewhat normal life. She takes tap and ballet, plays on the playground, rides a bike with training wheels. Bella is slowly learning "rules" of OI. She can't jump off a swing like her friends but she can slowly get off the swing. Bella is currently in the research program where she gets a research drug, pamidronat via IV. This drug increases density of the spine, but does NOT prevent breaks or decrease your severity of OI. She has to come to NIH every 3 months for a week. I cannot imagine that lifestyle for our family. We have no idea if we want to do the research drug. Luckily we don't have to decide that for awhile, because Caroline has to be at least 2 years of age. I just hope and pray that her Type IV is mild, but who knows.
If you want to read more about Type IV, please do so. http://www.oif.org/site/PageServer?pagename=fastfacts.
I am still trying to wrap my head around it.
In the end, are we glad we went? Yes, we learned some great exercises for her, plus got to meet a doctor that has been working with OI for over 25 years.. We go back in August for more x-rays, physical therapy, etc. We are still waiting on her skin biopsy results, and once those are back then Web and I can be tested to see if we are carriers or if this was a spontaneous mutation.
I know that I am forgetting tons of information. But I think I have touched on most of it! We continue to pray for Sweet Caroline! She is such a beautiful little girl!
The Children's Inn at NIH is great! This is where we stayed and they have done such a great job with the facility. The whole campus for that matter is so nice. The grounds are awesome, and it was so nice to take a walk around the campus when we 1st got there to unwind. There are sidewalks everywhere, a fantastic playground for kids, and tons of activities for children. Our 1st night they had movie night and gardening night. The kitchens are updated, laundry rooms have nicer washer and dryers than our own home! And all of the facilities are free for your use. A lot of the people that stay at the Inn are there for weeks if not months, and I am sure they appreciate the ammentities. HOWEVER, if we could change one thing it would be the rooms. The beds are in desperate need of being replaced. As well as the linens for the bed and the towels. I don't think Web and I slept at all during the 1st night and the 2nd night we were so emotionally spent I think we maybe got an hour or 2. I already know where we will be making our 2010 tax deduction, directly to the Children's Inn. It is such a phenomenal place and the families deserve better beds!
Ok now to the nitty gritty. Our visit with the doctors. Every doctor, nurse, tech, volunteer was extremely nice. They know that everyone that walks into the hospital is there for one reason and that's for their loved one to get the best care possible. We were immediately greeted with kindness and everyone showed us where to go. We started at 7:30 and went nonstop.
The good news, Caroline is STRONG! We met with the physical therapist, Holly and Dr Paul. They pulled, twisted, all of Caroline's limbs and they were so happy with her! On a scale of 1-10, she scored 7-9 on every muscle group! They were shocked that she could hold her head up, sit up (with assistance) and had great neck strength. She still has a way to go, but again they were so happy with how she could pull herself up while on her tummy. Caroline showed off as well! The day of her appt she was able to touch her toes, right arm to right leg. Not quite the left, Holly showed us an exercise to practice and as of now, she can grab her left toes with her left arm! Huge! She can also put her right foot in her mouth! Great milestones! Holly showed us more exercises and told us that the water will be the best exercises for Caroline. We were even given an xxxsmall vest to use in the water. It's pretty darn cute! Good thing is we can do a lot of the exercises in the bathtub for now. Because we don't have a pool, or a membership to a pool! It's on our to do list!
Not so good news, Sweet Caroline has Type IV OI. This was not what we wanted to hear and it totally took us by surprise. We were expecting to hear she was mild Type I. Caroline had a skin biopsy done and we will be told if her Type IV is mild, moderate, severe. So what's the difference? Well in laymans terms, Type I=good quality of collagen, less quantity. Type IV=poor quality of collagen, normal quantity.
Unfortunately, or fortunately, however you want to look at it. We shared a room with a 4 year old little girl, who has OI and her mom. Bella has Type IV OI on the more moderate to severe side. In her 4 short years, she has had 22 KNOWN fractures, and of those fractures the majority are her femur bones. She uses a walker, and sometimes a wheel chair. But her mom lets her lead a somewhat normal life. She takes tap and ballet, plays on the playground, rides a bike with training wheels. Bella is slowly learning "rules" of OI. She can't jump off a swing like her friends but she can slowly get off the swing. Bella is currently in the research program where she gets a research drug, pamidronat via IV. This drug increases density of the spine, but does NOT prevent breaks or decrease your severity of OI. She has to come to NIH every 3 months for a week. I cannot imagine that lifestyle for our family. We have no idea if we want to do the research drug. Luckily we don't have to decide that for awhile, because Caroline has to be at least 2 years of age. I just hope and pray that her Type IV is mild, but who knows.
If you want to read more about Type IV, please do so. http://www.oif.org/site/PageServer?pagename=fastfacts.
I am still trying to wrap my head around it.
In the end, are we glad we went? Yes, we learned some great exercises for her, plus got to meet a doctor that has been working with OI for over 25 years.. We go back in August for more x-rays, physical therapy, etc. We are still waiting on her skin biopsy results, and once those are back then Web and I can be tested to see if we are carriers or if this was a spontaneous mutation.
I know that I am forgetting tons of information. But I think I have touched on most of it! We continue to pray for Sweet Caroline! She is such a beautiful little girl!
Wednesday, April 7, 2010
Wingin' It
So I really suck bad at keeping up with this blog. I need a verbal blog. I am in my car a lot and I can always come up with things I want to talk about it, but of course, by the time I get home, it's bath, bottle, bed time. I always tell myself tomorrow I will update. Well here we are almost one month since my last post and I am just now updating! Oh well! One day! Maybe that can be my 2011 New Years Resolution, to be able to update once/week. I don't even know where I left off, I guess I could go back and look but that would mean learning how to save this post and come back to it. And since I have yet to figure out how to add more pictures, I will just update with where I think I left off.
Let's see, dad had his open heart surgery! It turned out to be a quadruple bypass, plus repair his mitral valve. The mitral valve was unexpected, and the surgery lasted longer plus it was way more evasive than just a simple bypass. Scary that bypass surgeries are so common. Dad did great, came home to OKC with us and sadly we had a set back. Dad was part of the 10-15% group that got fluid on his lungs. So after another surgery at St. Francis, plus another weeks stay there, he is officially home. The doctors, nurses, techs at St. Francis were awesome! They practically became family on the 3rd floor. We knew them by name and they knew us by name as well. Especially me, because when I was not in Tulsa to visit, I called relentlessly. If I couldn't get dad on his room phone or his cell phone, I made a point to call the nurses station and they would go into his room to check on him for me at that time and tell him to call me. I am sure they just loved that! Needless to say, there is a lot more to dads recovery, but I am sure he would prefer that I leave out all the gory details! He is doing well, and Caroline and I love visiting him. Just wish he lived closer!
On another note, we leave for NIH on Sunday! I can't believe it. Seems like we were just postponing our trip in February to April and thinking that it was forever away. And now here we are. We have our flight and hotel info. Plus we received our itinerary for all the doctors appointments. I am not going to lie. It's going to be rough. We get in Sunday night and start at 7:30 Monday morning. Now 7:30 is average for most people, but Caroline usually is taking a bottle at that time in her pj's while watching Matt Lauer. Not only do we start at 7:30 but we go all day long. Admissions, check-in, rehab appt, x-rays, meet with OI organizer of the program, lunch, physical therapy for 2 hours, THEN we meet with the doctor (Dr OI) at 4:30. We will be so drained by the time we see her. I am going to make our list of questions tonight, so we hopefully don't forget to ask her everything. During the appointment with Dr OI, they will do Caroline's skin biopsy. Just the words skin biopsy freak me out. I hope to gosh it doesn't hurt her. Then we get dinner, go to bed, just to start over again on Tuesday. At 8AM is her 1st appointment and it's a DEXA SCAN (where they check for her mineralization and check for osteoporosis, etc) No idea how long that will take. As of now, that is the only thing scheduled for Tuesday. I am thinking that Web and I might have some DNA work checked on us as well. Web and I are anxious to see if we are carriers. That will help us determine the rest of our family. Tuesday night we are back in OKC. So it's definitely a quick trip. I am not really scared of the doctors appointments, more just ready. I want to show them Caroline and I want them to show us more things that we can do to make her stronger. I hope we gain a lot of knowledge during the PT appointment.
I have made lists of things that I think we will need for Caroline. I have to pack the usual suspects, diapers, wipes, bottles, formula, clothing. But we also found out we need to bring our stroller. So add that to our list, which means we need to bring our infant seat because Caroline can't sit straight up in the stroller yet. She is soooo close to sit up on her own, but not quite there yet. Web and I will probably get charged an add'l $100 for all the stuff we are bringing on the plane! Oh well! It's our 1st time to fly with a baby, so better to be prepared than not! I already looked at the TSA website and read about bringing bottles on the plane!
As you can see, we have been super busy! But like I have told some people if it's not one thing, it would be another. So we can handle this. We can get through this. And when/if life starts getting a little less complicated, I am sure I can find something to keep me busy!
Well this is all for now. I hope you all had a great Easter with your family! I am changing the picture to our family Easter photo. I PROMISE to update this blog once we get back from NIH! Thank you all for your continued prayers and support of my dad and our Sweet Caroline.
XOXO
Let's see, dad had his open heart surgery! It turned out to be a quadruple bypass, plus repair his mitral valve. The mitral valve was unexpected, and the surgery lasted longer plus it was way more evasive than just a simple bypass. Scary that bypass surgeries are so common. Dad did great, came home to OKC with us and sadly we had a set back. Dad was part of the 10-15% group that got fluid on his lungs. So after another surgery at St. Francis, plus another weeks stay there, he is officially home. The doctors, nurses, techs at St. Francis were awesome! They practically became family on the 3rd floor. We knew them by name and they knew us by name as well. Especially me, because when I was not in Tulsa to visit, I called relentlessly. If I couldn't get dad on his room phone or his cell phone, I made a point to call the nurses station and they would go into his room to check on him for me at that time and tell him to call me. I am sure they just loved that! Needless to say, there is a lot more to dads recovery, but I am sure he would prefer that I leave out all the gory details! He is doing well, and Caroline and I love visiting him. Just wish he lived closer!
On another note, we leave for NIH on Sunday! I can't believe it. Seems like we were just postponing our trip in February to April and thinking that it was forever away. And now here we are. We have our flight and hotel info. Plus we received our itinerary for all the doctors appointments. I am not going to lie. It's going to be rough. We get in Sunday night and start at 7:30 Monday morning. Now 7:30 is average for most people, but Caroline usually is taking a bottle at that time in her pj's while watching Matt Lauer. Not only do we start at 7:30 but we go all day long. Admissions, check-in, rehab appt, x-rays, meet with OI organizer of the program, lunch, physical therapy for 2 hours, THEN we meet with the doctor (Dr OI) at 4:30. We will be so drained by the time we see her. I am going to make our list of questions tonight, so we hopefully don't forget to ask her everything. During the appointment with Dr OI, they will do Caroline's skin biopsy. Just the words skin biopsy freak me out. I hope to gosh it doesn't hurt her. Then we get dinner, go to bed, just to start over again on Tuesday. At 8AM is her 1st appointment and it's a DEXA SCAN (where they check for her mineralization and check for osteoporosis, etc) No idea how long that will take. As of now, that is the only thing scheduled for Tuesday. I am thinking that Web and I might have some DNA work checked on us as well. Web and I are anxious to see if we are carriers. That will help us determine the rest of our family. Tuesday night we are back in OKC. So it's definitely a quick trip. I am not really scared of the doctors appointments, more just ready. I want to show them Caroline and I want them to show us more things that we can do to make her stronger. I hope we gain a lot of knowledge during the PT appointment.
I have made lists of things that I think we will need for Caroline. I have to pack the usual suspects, diapers, wipes, bottles, formula, clothing. But we also found out we need to bring our stroller. So add that to our list, which means we need to bring our infant seat because Caroline can't sit straight up in the stroller yet. She is soooo close to sit up on her own, but not quite there yet. Web and I will probably get charged an add'l $100 for all the stuff we are bringing on the plane! Oh well! It's our 1st time to fly with a baby, so better to be prepared than not! I already looked at the TSA website and read about bringing bottles on the plane!
As you can see, we have been super busy! But like I have told some people if it's not one thing, it would be another. So we can handle this. We can get through this. And when/if life starts getting a little less complicated, I am sure I can find something to keep me busy!
Well this is all for now. I hope you all had a great Easter with your family! I am changing the picture to our family Easter photo. I PROMISE to update this blog once we get back from NIH! Thank you all for your continued prayers and support of my dad and our Sweet Caroline.
XOXO
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