What a crazy week! Caroline has been to 2 doctor appointments, and was a champ at both of them!
AND our Sweet Caroline turns 11 months old today! I can not even believe it. I can not believe this time last year, Web and I were seriously crying most nights wondering what Caroline might bring to our family. By this time, we knew she didn't have ACH or HCH and we just knew she was going to be ok. No way would she have "worst case scenario" as the high risk counselor told us she could have. But lo and behold, our Sweet Caroline had OI, the "worst case scenario" and our journey of unknowns began.
One of our dr appts this week was with a developmental pediatrician, Dr. Brennan. Who knew they even existed? He treats kids with osteopenia, osteoporosis, and OI. He is literally 20 minutes from our house. He has a dozen or so OI patients and he gives them PAM (pamidronate). This is great news! We asked him his criteria for giving PAM. NIH said they have to be at least 2 years of age. Dr.Brennan has 2 questions for the parents.
1. Does she have pathologic fractures? YES, right femur.
2. Does OI interfere with developmental milestones? YES, C is not crawling or standing.
So, we meet his criteria and we can start PAM asap. We did talk to him about the OI clinic in Omaha and he thought it was a great idea to get as much info from as many doctors as possible. He even said he would work with the endocrinologist in Omaha on treatment plan. Dr. Brennan also has a pediatric physiatrist/rehabilitation medicine doctor who works with OI patients. We meet with him end of October and hoping he can help Caroline learn to walk and crawl.
We also met with our orthopedic, Dr. Herndon this week. He was very impressed with Caroline's healing from her fractures this summer. He is still stumped about her hip dysplasia but we are hoping that the OI ortho expert in Omaha might have an idea. Dr. Herndon set us up with an appt next week at the orthotics clinic. We are trying to find a way for Caroline to stand up without breaking a leg bone.
As you can see it has been a hell of a week. Lots of appts, all for the good. Lots of info, all more confusing!
But we are going to keep up with the journey and maybe one day we might be a little ahead of the journey.
Lots of love!
Kristine
Thursday, September 30, 2010
Monday, September 20, 2010
Not much
I don't really have much to say, but felt like I should give some kind of an update on us. Caroline is doing well. KNOCK ON WOOD! She definitely is wanting to be mobile. She is constantly moving and pulling on her legs. It makes Web and I a nervous wreck. Yes, we want her to be a "normal" child who puts her toes in her mouth. Yes we want her to be mobile. But NO we do not want a new fracture. I have been reading some of the OI posts on the group site and a lot of the moms talk splinting their own children instead of taking them to an ER and casting them. I guess I can see how that makes some sense, but I can't imagine splinting Caroline myself. What if I did it wrong and her leg healed incorrectly? I guess that's a question we will need to ask Omaha.
We meet with a local dr. in OKC next Monday. We made this appt awhile back and he is hard to get into. I hope we ask the correct questions and get the answers we need. I also hope that he works with the Omaha team, or at least knows of the Omaha team.
We'll find out soon enough!
We did just come back from our family holiday. We went to Santa Fe and it was nice! I did learn that if I am going to drive with a baby for 2 full days, then we need to be gone at least 1 week, not 3 days. I felt that by the time I had everything unpacked, organized it was time to pack back up. Plus, we had to all deal with altitude and it was not east. Caroline and I were not fans. But we will have many more trips to Santa Fe and we can't wait to stay longer and really enjoy ourselves.
A lot of you have asked about Caroline's teeth lately and I honestly do not know. Her teeth have kind of stopped cutting. One tooth is about 3/4 of the way thru the gums. The 2nd tooth is about 1/4 thru the gums, and we haven't had any movement in weeks. It's like they are stuck. It's really starting to tick me off. I guess after Omaha I will try and find a dentist in OKC that has DI experience which will be another challenge. It's going to piss me off to no end if she has bad teeth. Yes, in the grand scheme of things it's just teeth. But like I have said before, Caroline has the sweetest smile and if she is going to be in casts, walkers, wheel chairs then at least she can have a pretty pearly white smile. For some reason, I just can't get past it.
I will send an update next week after we meet with Dr. Brennan in OKC.
Love to all.
We meet with a local dr. in OKC next Monday. We made this appt awhile back and he is hard to get into. I hope we ask the correct questions and get the answers we need. I also hope that he works with the Omaha team, or at least knows of the Omaha team.
We'll find out soon enough!
We did just come back from our family holiday. We went to Santa Fe and it was nice! I did learn that if I am going to drive with a baby for 2 full days, then we need to be gone at least 1 week, not 3 days. I felt that by the time I had everything unpacked, organized it was time to pack back up. Plus, we had to all deal with altitude and it was not east. Caroline and I were not fans. But we will have many more trips to Santa Fe and we can't wait to stay longer and really enjoy ourselves.
A lot of you have asked about Caroline's teeth lately and I honestly do not know. Her teeth have kind of stopped cutting. One tooth is about 3/4 of the way thru the gums. The 2nd tooth is about 1/4 thru the gums, and we haven't had any movement in weeks. It's like they are stuck. It's really starting to tick me off. I guess after Omaha I will try and find a dentist in OKC that has DI experience which will be another challenge. It's going to piss me off to no end if she has bad teeth. Yes, in the grand scheme of things it's just teeth. But like I have said before, Caroline has the sweetest smile and if she is going to be in casts, walkers, wheel chairs then at least she can have a pretty pearly white smile. For some reason, I just can't get past it.
I will send an update next week after we meet with Dr. Brennan in OKC.
Love to all.
Tuesday, September 7, 2010
Omaha or Bust
Well I did it. I finally had the balls to call Children's Hospital in Omaha. We have an appointment for an OI Clinic visit on Thursday, November 4th. I also made an appt. for the afternoon of Thursday for Caroline to receive her 1st PAM treatment via IV. However, we do have the option of canceling it. If we keep it, we spend the night in the hospital, released 1st thing Friday morning and we will be on our way home. Done and done. Bring me home out of Omaha and out of the hospital. I am 85% positive that we will do the PAM treatment, but mentally I like knowing that we have an out. But as I read more and more testimonials from moms with OI kids I know that it is the right thing for an OI baby. But I still get ill thinking about Caroline hooked up to IVs getting a drug. I don't think I will ever get used to it. Her 1st 2 years, they will have us do the treatments every 8 weeks. That's so many times! But hopefully we can do them in OK and not Omaha every time. No offense but Omaha sounds boring to me. At least NIH was near the capitol and things to do! Omaha in November=snow! But I know we will survive!!
I was reading more testimonials today and a lot of the moms were talking about helmets for their kids. It's so sad. If an OI baby falls on their head, bumps their head, etc they can fracture their skull and have to wear a helmet for months, if not years. Makes me want to vomit. So today I have been extremely careful with Caroline, probably more than an usual! They are also talking about wheel chairs and which ones are best and light weight. Needless to say, it's been a depressing day on the OI site. This is why I hesitated joining one because I didn't think I was ready to hear this information. Guess I was ready to read it, but not ready to accept it. Maybe one day.
Thanks for all the calls, emails texts about our blood test results! And NO I am not pregnant yet! You people crack me up!
Love to all!
I was reading more testimonials today and a lot of the moms were talking about helmets for their kids. It's so sad. If an OI baby falls on their head, bumps their head, etc they can fracture their skull and have to wear a helmet for months, if not years. Makes me want to vomit. So today I have been extremely careful with Caroline, probably more than an usual! They are also talking about wheel chairs and which ones are best and light weight. Needless to say, it's been a depressing day on the OI site. This is why I hesitated joining one because I didn't think I was ready to hear this information. Guess I was ready to read it, but not ready to accept it. Maybe one day.
Thanks for all the calls, emails texts about our blood test results! And NO I am not pregnant yet! You people crack me up!
Love to all!
Friday, September 3, 2010
Omaha?
I don't even know where to begin. As you know this week we got 100% fantastic news. Web and I are 98% NOT carriers of OI! Yeah, prayers answered. But that same day we found out more information than we know what to do with. I finally joined an OI support group. It's a bunch of parents of all types of OI children. Anywhere from OI Type I mild to OI Type 2 Severe. So I read just about anything and everything you can imagine. I rarely get off the site without tears in my eyes. The main reason I got on the site is because we are having serious bathtub issues with Caroline. I think we found another one that will work for now, but I digress.
When you join the support group you introduce yourself, your spouse and your OI child. Give description on how many breaks, when you found out about OI, care you have been giving your child, and how long you have been giving your child pamidronate (PAM). So I give our info, mention NIH, and that Dr. advised us that new babies cannot take PAM and that we will start it when she is 2. Let me just tell you that the responses started coming in like a dam broke. No one likes Dr. Marini (Dr. OI), all these kids started PAM as early as birth, and reminded me that NIH was research hospital not remedy hospital. One mother told me that she has a 17 month old that had multiple in utero fractures like Caroline, has been on PAM since she was 3 days old and has only had 1 fracture! There are so many other stories, it's truly unbelievable. I literally received 19 emails from parents about this 1 subject. Apparently there is an OI expert team in Omaha, NE of all places. They have OI days, one day out of the month and you meet with a nurse practioner, physical therapist, occupational therapist, endocronologist, and orthopedic surgeon. Apparently this ortho surgeon is one of the best and kids from all over the WORLD come to him in Omaha. But he also works with surgeons across the country and will help them with your child if needed. So as you can see the day we found out we were not carriers, we also found out that maybe we were giving Caroline the wrong course of treatment. It's all so confusing, upsetting and heartbreaking. To think that we could have been given Caroline the drug earlier, and maybe prevented her the pain she has experienced literally breaks our hearts into pieces.
What do we do? Well after many calls to Omaha this week we need to schedule our appt with this OI team and see what they can do for Caroline. I have also found a dr. in Bethany, OK that administers PAM and I am hopeful that we can do all her PAM treatments in OK and not Omaha. Omaha is not free like NIH and we will have to pay whatever insurance doesn't cover. Right now we aren't sure if they cover PAM or not, but we are crossing fingers. Of course, we will provide Caroline any and all treatment she deserves, but still hoping insurance can help!
Once we meet with Omaha team and decide this is what we want to do, then we will have to pay for our flights, hotels, rental car, everything. It will be like vacation expense, but without the rest!
Now some of you may be wondering why we haven't made appt. with Omaha, and I will take the blame. Yes, I know that this is the right decision for us to go there meet the doctors and more than likely start Caroline on PAM. But there is a selfish side of me that doesn't want to see her in a hospital every 8 weeks hooked up to IVs, and hoping that she won't have any side effects. The most common side effects are high fever and bone pain. I am also being selfish as the only appt in October would be a few weeks before her birthday and I do not want her in pain or fussy on her 1st birthday. Web and I didn't get a real mom's day or a real dad's day because we were at Children's Hospital and I really want her 1st birthday to be special and with pictures!! If we go in October it would be her first PAM treatment and we have no idea how she will handle it. Selfish of me? Yes. I should not even be worrying about her birthday, I should call Omaha without hesitation and book our appt, but I just couldn't do it this week or today like I had planned. I keep telling myself November will be best, but seriously when is a good time to see your child with IVs hooked up to them?
This has been an exhausting week to say the least. We got a great high, then got thrown for a huge loop.
I am sure next week I will come to a decision. If it were up to Web, we would already have the hotel booked, but I am just not there yet. Again, I want nothing but the best for Caroline no matter where it is, or how much it costs, so please don't think I am bad person. Just a mom that can't stop worrying about her daughter.
Thanks again for all your prayers and positive thinking!
Love to all,
Kristine
When you join the support group you introduce yourself, your spouse and your OI child. Give description on how many breaks, when you found out about OI, care you have been giving your child, and how long you have been giving your child pamidronate (PAM). So I give our info, mention NIH, and that Dr. advised us that new babies cannot take PAM and that we will start it when she is 2. Let me just tell you that the responses started coming in like a dam broke. No one likes Dr. Marini (Dr. OI), all these kids started PAM as early as birth, and reminded me that NIH was research hospital not remedy hospital. One mother told me that she has a 17 month old that had multiple in utero fractures like Caroline, has been on PAM since she was 3 days old and has only had 1 fracture! There are so many other stories, it's truly unbelievable. I literally received 19 emails from parents about this 1 subject. Apparently there is an OI expert team in Omaha, NE of all places. They have OI days, one day out of the month and you meet with a nurse practioner, physical therapist, occupational therapist, endocronologist, and orthopedic surgeon. Apparently this ortho surgeon is one of the best and kids from all over the WORLD come to him in Omaha. But he also works with surgeons across the country and will help them with your child if needed. So as you can see the day we found out we were not carriers, we also found out that maybe we were giving Caroline the wrong course of treatment. It's all so confusing, upsetting and heartbreaking. To think that we could have been given Caroline the drug earlier, and maybe prevented her the pain she has experienced literally breaks our hearts into pieces.
What do we do? Well after many calls to Omaha this week we need to schedule our appt with this OI team and see what they can do for Caroline. I have also found a dr. in Bethany, OK that administers PAM and I am hopeful that we can do all her PAM treatments in OK and not Omaha. Omaha is not free like NIH and we will have to pay whatever insurance doesn't cover. Right now we aren't sure if they cover PAM or not, but we are crossing fingers. Of course, we will provide Caroline any and all treatment she deserves, but still hoping insurance can help!
Once we meet with Omaha team and decide this is what we want to do, then we will have to pay for our flights, hotels, rental car, everything. It will be like vacation expense, but without the rest!
Now some of you may be wondering why we haven't made appt. with Omaha, and I will take the blame. Yes, I know that this is the right decision for us to go there meet the doctors and more than likely start Caroline on PAM. But there is a selfish side of me that doesn't want to see her in a hospital every 8 weeks hooked up to IVs, and hoping that she won't have any side effects. The most common side effects are high fever and bone pain. I am also being selfish as the only appt in October would be a few weeks before her birthday and I do not want her in pain or fussy on her 1st birthday. Web and I didn't get a real mom's day or a real dad's day because we were at Children's Hospital and I really want her 1st birthday to be special and with pictures!! If we go in October it would be her first PAM treatment and we have no idea how she will handle it. Selfish of me? Yes. I should not even be worrying about her birthday, I should call Omaha without hesitation and book our appt, but I just couldn't do it this week or today like I had planned. I keep telling myself November will be best, but seriously when is a good time to see your child with IVs hooked up to them?
This has been an exhausting week to say the least. We got a great high, then got thrown for a huge loop.
I am sure next week I will come to a decision. If it were up to Web, we would already have the hotel booked, but I am just not there yet. Again, I want nothing but the best for Caroline no matter where it is, or how much it costs, so please don't think I am bad person. Just a mom that can't stop worrying about her daughter.
Thanks again for all your prayers and positive thinking!
Love to all,
Kristine
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