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