This is going to be short and sweet. Mainly because I am too elated to think about all the other things associated with OI. Right now I am just going to be happy. I just got off the phone with Dr. Marini at NIH (Dr. OI) and because of the mutation, we are 98% clear of NOT being carriers! HOORAY! Of course, there is always the ugly 2% but we were never expecting a 100%. With genetics and all the cells in our body, you just can't be 100% sure!
Much more to come!
But THANK YOU THANK YOU THANK YOU for all your kind words, emails, texts, phone calls, prayers.
Love to all!
Monday, August 30, 2010
Thursday, August 19, 2010
update
I am not even sure where to begin. The last 2 weeks have been a whirlwind. Sweet C was put in a cast, we bought a house, moved, unpacked all boxes, and now she is out of the cast! This was all done in approx. 10 days! But once I set my mind to something I try to accomplish it. Unless of course, it's decorating. Just because the boxes are unpacked does not mean the house is in order. The other night I opened up every cabinet in the kitchen before I could find a mixing bowl! But we are loving our new house! And we are even happier that Caroline can now swim in her new pool! Talk about irony. We buy this house for Caroline because she needs to be in the water daily working her legs and arms, and our 1st day in the house and she is in a cast! Oh well! She is in the pool now and we are going to enjoy the moments that we have with her until the next body cast.
Yes, I said the next body cast. I am slowly realizing that this is our life. It's not "if" she will have another one, it's "when" she will have another one. Sadly that's just the way it is. Web and I would do anything we could to take this away from her, but we can't. And we would do anything possible to avoid any and all injuries, but we can't do that either. I am watching her like a hawk. She is wanting to be so mobile. It scares me to death.
I think on the last post I mentioned that they didn't see a fracture. Well when we were at the dr. this week and took the new x-ray he could clearly see where the break was and how it was healing. It's crazy to me that fractures can take 5-7 days to show up. But he could see how it was healing, and he didn't think we needed to keep her in the cast. But she is still healing and she is very hesitant with her leg. So Web and I are being extra careful with her, if that's even possible. Our next appt. with the dr, we will talk about walking equipment. He is hoping he can find an apparatus that will help her walk but not put all her weight on her legs. We are waiting to buy any of the fun walkers that you see at Target or Babies R Us, because a medical tool would be best. It makes me a nervous wreck thinking of her walking, but I can't wait to see her face when she does it for the 1st time.
As for NIH, we are still waiting to hear back from them on our next trip. I let them know that Caroline was out of the cast. They are going through some personnel changes and I have no idea when we will be there. I was also told that our blood work is not complete. This makes me super nervous. We were told it would take a couple of weeks and more than likely we would have the results on our trip the 1st week of August. Well here we are the 3rd week of August, and still no results. This makes Web and I think something isn't right. Like I have said all along, I have this feeling I could be a carrier. And this waiting is making me believe it even more. I guess we'll just wait for the call. It totally sucks.
I was telling some friends earlier this week that this was C's 2nd known femur fracture, 2nd body cast. I remember meeting Bella at NIH awhile back and her mom saying she had 14 femur breaks in 4 years and I thought my gosh, that's a lot, no way will Caroline have that many. Well here we are 9 1/2 months and she already has 2. At this rate, she will have many more than 14. It pisses me off to no end, that my Sweet Caroline will experience that much pain. She doesn't deserve it.
I still wish I knew what I did in my past life to bring this much pain to my child. Whatever it was, I would go back in time in a heartbeat and change it.
Love to all
Kristine
Yes, I said the next body cast. I am slowly realizing that this is our life. It's not "if" she will have another one, it's "when" she will have another one. Sadly that's just the way it is. Web and I would do anything we could to take this away from her, but we can't. And we would do anything possible to avoid any and all injuries, but we can't do that either. I am watching her like a hawk. She is wanting to be so mobile. It scares me to death.
I think on the last post I mentioned that they didn't see a fracture. Well when we were at the dr. this week and took the new x-ray he could clearly see where the break was and how it was healing. It's crazy to me that fractures can take 5-7 days to show up. But he could see how it was healing, and he didn't think we needed to keep her in the cast. But she is still healing and she is very hesitant with her leg. So Web and I are being extra careful with her, if that's even possible. Our next appt. with the dr, we will talk about walking equipment. He is hoping he can find an apparatus that will help her walk but not put all her weight on her legs. We are waiting to buy any of the fun walkers that you see at Target or Babies R Us, because a medical tool would be best. It makes me a nervous wreck thinking of her walking, but I can't wait to see her face when she does it for the 1st time.
As for NIH, we are still waiting to hear back from them on our next trip. I let them know that Caroline was out of the cast. They are going through some personnel changes and I have no idea when we will be there. I was also told that our blood work is not complete. This makes me super nervous. We were told it would take a couple of weeks and more than likely we would have the results on our trip the 1st week of August. Well here we are the 3rd week of August, and still no results. This makes Web and I think something isn't right. Like I have said all along, I have this feeling I could be a carrier. And this waiting is making me believe it even more. I guess we'll just wait for the call. It totally sucks.
I was telling some friends earlier this week that this was C's 2nd known femur fracture, 2nd body cast. I remember meeting Bella at NIH awhile back and her mom saying she had 14 femur breaks in 4 years and I thought my gosh, that's a lot, no way will Caroline have that many. Well here we are 9 1/2 months and she already has 2. At this rate, she will have many more than 14. It pisses me off to no end, that my Sweet Caroline will experience that much pain. She doesn't deserve it.
I still wish I knew what I did in my past life to bring this much pain to my child. Whatever it was, I would go back in time in a heartbeat and change it.
Love to all
Kristine
Wednesday, August 4, 2010
body cast #2
Well we didn't make it to NIH. Late last night, Web and I decided not to go. Caroline wasn't doing well at all. Mommy and daddy weren't doing well either. Nerves were/are shot. We called them 1st thing this morning and they agreed that it would not be wise to travel with her. So United Airlines flight got lucky! No crying baby on that flight! Long story short. We called the ortho dr. this AM and pretty much demanded that he see Caroline today. He looked at her x-rays and didn't see a fracture, but he could tell that she was in a lot of pain. As you might remember, fractures can take up to 5-7 days to show up on film. She is obviously uncomfortable. So Sweet Caroline is in a body cast. But this time it's just on her right leg, not her left, but it goes up her chest. Poor thing is so hot. Nothing like layers and layers of cotton on her with 100+ temps. She will be in the cast for at least 2 weeks and we are hoping that this will heal her leg.
Our day has sucked. We are exhausted. There is nothing worse than an inconsolable baby. We just hope that tomorrow will bring us a happy baby.
I am leaving out on a lot of details right now, but I am just too tired. We have a lot to be thankful for, most definitely.
Caroline didn't break a rib, that could have punctured her lung, which could have hurt her in ways I can't even begin to think about.
I would like to think everyone so much for all your emails, texts, voice mails, FB messages. It means so much to us. Every one of them gets read, even though they might not get answered. Your prayers and positive thoughts are seriously getting us (especially me) through this crazy ordeal.
Thank you! Thank you! Thank you!
As for rescheduling our NIH trip, it will probably be some time in September. Hopefully we can get the blood results before then, but right now the thought of another child is the last thing on my mind.
Again, thanks for the prayers, please keep them coming!
Love to all!
Our day has sucked. We are exhausted. There is nothing worse than an inconsolable baby. We just hope that tomorrow will bring us a happy baby.
I am leaving out on a lot of details right now, but I am just too tired. We have a lot to be thankful for, most definitely.
Caroline didn't break a rib, that could have punctured her lung, which could have hurt her in ways I can't even begin to think about.
I would like to think everyone so much for all your emails, texts, voice mails, FB messages. It means so much to us. Every one of them gets read, even though they might not get answered. Your prayers and positive thoughts are seriously getting us (especially me) through this crazy ordeal.
Thank you! Thank you! Thank you!
As for rescheduling our NIH trip, it will probably be some time in September. Hopefully we can get the blood results before then, but right now the thought of another child is the last thing on my mind.
Again, thanks for the prayers, please keep them coming!
Love to all!
Tuesday, August 3, 2010
pissy mood
Well I created this blog as a platform for me to put out my thoughts, like a therapy. My friends asked me to do it and it has been a lifesaver. I have not always been positive, but getting my feelings out there has always made me feel better, almost lighter. So, I am hoping that happens today. I am in a super pissy, bad mood. And I mean SUPER. Yesterday our day started off just like any other day. Web was getting ready for work, Caroline and I were laying in bed watching Matt Lauer. Web kisses us good bye, wishes his girls a great day and our day has begun. As Web is downstairs eating his yogurt, C is sitting up next to me. She leans forward, falls to the left and lands on her side. This happens a lot. When she is on soft surfaces she can not sit up as well as hard surface. But Web and I are always next to her and we immediately pull her back up, she laughs and we continue playing. Well yesterday not so much, she screamed bloody murder. Her face was as red as a tomato. It was so loud, that Web ran up the stairs and immediately knew something was wrong. We debated back and forth all morning on what we should do. I immediately thought we should go to the ER, that's what Dr. Herndon would say to do. Go to the ER. Web didn't want to go, because she was kicking both her legs. Which she was, however, she was still crying. We finally gave her some Motrin, she calmed down some and Web went to work. Well not 15 minutes later she started crying again. I would say 80% of the day yesterday she cried. The other 20% she was eating or sleeping. Web finally broke down, called Dr. Herndon, and sure enough, we were headed to the ER. Bless Web. He hates taking his daughter there. We both do. But for him, it is even tougher to see his daughter in the ER. For me, it's almost like a relief, because we can at least see what the problem might be on an x-ray.
As always, we have to tell the staff at Children's what to do for her. By this time, we know it's her right femur/hip. No intern, it's not her left, or her arms. Yes intern, we have done this before. Please intern, can you just set us up with radiology. Finally the x-ray tech comes in. No, I am not pregnant. Yes, I will hold her legs. Yes, we have done this before. Yada Yada. I could seriously write a book. I know they are being thorough, but come on already and just take the x-ray. The intern comes in with her boss, and he doesn't see a fracture. But he isn't sure because her x-rays are tough. Did you know she is bowed on her left femur? YES. WE DO. So, radiology is paged, our ortho is paged and we wait. Both dr's come back in and they think, as do the radiologist and our dr's office, that she just injured her already dislocated hip. Whoah. No fracture! No body cast! Hooray! So what can we do for her? NOTHING. Motrin is all. So, you mean to tell me our daughter gets to just be in pain? YES.
Remember, this is our dr's. 1st time to have an OI patient with a dislocated hip. This is new, and he has no idea how to make it better for her. We can't do surgery and pop her hip back in because it would break her femur. It's a vicious cycle, that has no end in sight.
Our Sweet, Sweet Caroline is in pain and there is absolutely nothing we can do about it. It's the hardest thing watching your daughter cry anytime we move her. Bath time, changing her diaper, high chair, playing, laying down, she cries out. I for one, knows how she feels since I have had hip pain before. It's not fair, and it really pisses me off. However, once we get her comfortable, she is ok. It's just getting her to that point. And I hate having to give her Motrin every 6 hours for who knows how long.
So what do we do? We are supposed to leave for NIH tomorrow morning. Well, we go. We would like to apologize now to all the passengers on United flight 7391 tomorrow leaving OKC for Dulles. We will be the parents with the screaming child on the NON STOP 3 hour flight. We are hoping our rehab dr. and our physical therapist can offer us some advice on how to treat her dislocation and maybe, just maybe they know of another case on how to treat her hip and her femurs.
As you can see, I am pissed. I am past pissed. I hate OI. I hate everything about it. I don't think it's fair that she has to go through this at all. Yes, I know there are worst problems out there, and some mothers go through way more than I hope I ever have to go through. But I am allowed to be pissy. I am allowed to be mad. I was thinking this morning, that if OI had a face I would punch it. Well, OI does have a face and it's my daughter. And then that pissed me off even more! It's never ending.
AND on top of all that, we have a teething baby. She has cut her 1st tooth and every day I look at it to see if it has DI. Of course, it's just cut and it's too soon to tell, but let's face it. She'll have it. Then that will piss me off! UGHHHHHHHH!
I hope none of you are on our flight tomorrow! We probably won't be at our best! I was really hoping this post would put me in a better place about all this, but so far not so much. Maybe I should just go outside and scream on the top of my lungs? That would be a sight. I am sure the neighbors would love that!
Love to all
As always, we have to tell the staff at Children's what to do for her. By this time, we know it's her right femur/hip. No intern, it's not her left, or her arms. Yes intern, we have done this before. Please intern, can you just set us up with radiology. Finally the x-ray tech comes in. No, I am not pregnant. Yes, I will hold her legs. Yes, we have done this before. Yada Yada. I could seriously write a book. I know they are being thorough, but come on already and just take the x-ray. The intern comes in with her boss, and he doesn't see a fracture. But he isn't sure because her x-rays are tough. Did you know she is bowed on her left femur? YES. WE DO. So, radiology is paged, our ortho is paged and we wait. Both dr's come back in and they think, as do the radiologist and our dr's office, that she just injured her already dislocated hip. Whoah. No fracture! No body cast! Hooray! So what can we do for her? NOTHING. Motrin is all. So, you mean to tell me our daughter gets to just be in pain? YES.
Remember, this is our dr's. 1st time to have an OI patient with a dislocated hip. This is new, and he has no idea how to make it better for her. We can't do surgery and pop her hip back in because it would break her femur. It's a vicious cycle, that has no end in sight.
Our Sweet, Sweet Caroline is in pain and there is absolutely nothing we can do about it. It's the hardest thing watching your daughter cry anytime we move her. Bath time, changing her diaper, high chair, playing, laying down, she cries out. I for one, knows how she feels since I have had hip pain before. It's not fair, and it really pisses me off. However, once we get her comfortable, she is ok. It's just getting her to that point. And I hate having to give her Motrin every 6 hours for who knows how long.
So what do we do? We are supposed to leave for NIH tomorrow morning. Well, we go. We would like to apologize now to all the passengers on United flight 7391 tomorrow leaving OKC for Dulles. We will be the parents with the screaming child on the NON STOP 3 hour flight. We are hoping our rehab dr. and our physical therapist can offer us some advice on how to treat her dislocation and maybe, just maybe they know of another case on how to treat her hip and her femurs.
As you can see, I am pissed. I am past pissed. I hate OI. I hate everything about it. I don't think it's fair that she has to go through this at all. Yes, I know there are worst problems out there, and some mothers go through way more than I hope I ever have to go through. But I am allowed to be pissy. I am allowed to be mad. I was thinking this morning, that if OI had a face I would punch it. Well, OI does have a face and it's my daughter. And then that pissed me off even more! It's never ending.
AND on top of all that, we have a teething baby. She has cut her 1st tooth and every day I look at it to see if it has DI. Of course, it's just cut and it's too soon to tell, but let's face it. She'll have it. Then that will piss me off! UGHHHHHHHH!
I hope none of you are on our flight tomorrow! We probably won't be at our best! I was really hoping this post would put me in a better place about all this, but so far not so much. Maybe I should just go outside and scream on the top of my lungs? That would be a sight. I am sure the neighbors would love that!
Love to all
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