Hello! My goal was to send this email on Thursday, but here it is 10 PM on Sunday night and I am just now able to start the email update. It's amazing how quickly the weekend goes! I had so much I wanted to accomplish this weekend, but only achieved maybe 1/4. But that's ok! We have a Christmas tree up with lights, but no ornaments. My goal this week is for some fairy to come down from the sky and finish it up for me! Drives me nuts not having them on the tree!
We have been pretty busy this past week, with 3 doctor appts. We went to Caroline's pediatrician and she was not the happiest of children. They weighed her, and she is becoming quite the chunky monkey! She is now 7lbs 2ozs! She is right on target for 1/2 an ounce/day. So that is great news! However, when it came time to measure her length, she was not a happy baby. The nurse touched her left leg and let's just say the whole office heard Caroline scream. If I would have known the nurse was going for that leg first, I would have immediately stopped her and told her to go for the right leg. The right leg is doing great right now. Caroline stretches it out and it doesn't hurt her. But her left leg, not so much. Needless to say, by the time the doctor came in to see her we still had a cranky baby. Note to self, when they put Caroline on the long white table, they are measuring her, and I need to be ahead of the game and let them know which leg, if any, they can touch. Better luck next time.
We also went to the pediatric orthopedic, Dr Herndon. I went armed and ready. If you remember last time we were there, Web and I were not ready for what we were about to witness. I had everything imaginable; 2 bottles, extra blankets, Tylenol. They called us back to the exam room. Dr Herndon asked how Caroline has been the last month, we gave him our opinions on what we think our her latest breaks, latest accomplishments. He looks her over, and says no x-rays that day! We were shocked. He immediately told us that Caroline will have so many x-rays in her future and be under so much radiation that he didn't think it was necessary for this appointment. In one way, we were relieved! Yeah! We didn't have to see our sweet daughter being pulled in so many directions while we watch helpless. But, we were also a little upset because we wanted to know if there were more breaks or if there were none. I guess no news is good news. And as Dr Herndon told us, we will eventually learn what's broken and what's not. His main concern at this appointment was her left leg, above the knee. Well duh, I could have told him that. She hadn't moved it in awhile, plus the nurse just 2 days before tried to straighten it to take her measurement.
Of course, Web and I went armed with many questions as well.
When will she get rods in her legs?
When do we start physical therapy?
When do we start her on bisphosphanate?
He was happy that we had done our research, but he pretty much told us to slow down. He told us more than once, I would say at least 10 times, that we had to remember she is only one month old. There is no doctor that would give her any medicine at this age. He can't tell us anything about rods in her legs, until we see how/if her legs grow and how many breaks she might have in her first year. Plus there is no age where he says, "well you are now 3 you get rods!" Not so much. And as for physical therapy, we need to just do some movement with her limbs, but that's all for now. Again, reminder she is only one month old. It's so annoying though, because you want to do something to help her NOW! Not when she is 1 or 2 or 10 years old, but NOW! Dr Herndon told us that he doesn't need to see her again until March, unless of course, we notice something else, that we want him to see. But seriously what's the point of taking her in right now? He can't cast her, he doesn't want to take x-rays if it's not necessary, and we know when she has a new break, or what we think is a new break because Caroline tells us in her own newborn way. She won't move that specific limb. Don't get us wrong. We had a great appointment all in all. Was it what we were expecting? NO. Were we happy that we took home a happy baby? YES. We will just keep watching her limbs and see how she does. Of course, we are still waiting to hear from Dr. OI at NIH in Maryland. Hopefully we will hear from her sooner than later, Web and I would like to ask her the same questions and get working on some water exercises.
As for our 3rd appointment, it was for Web and I. We haven't stopped going to our therapy appointments, and I don't see an end in sight. Web has been great, he does research and talks to people at the OI Foundation. They even mentioned Web and I going to the OI Nat'l Convention in July. But not sure if we are ready for that. Caroline won't even be a year yet and we still aren't sure on the severity of OI. Of course, that goes back to the whole wait out the year that drives me batty because I want to know NOW. I have no patience. I was talking to our therapist about how mad I am at OI and how I am just so ticked off! I don't get to change my daughters diaper like other moms, I don't get to hold my daughter like other moms, I don't get to learn the "I am hungry cry", because my daughter is hungry 24/7. Our pediatrician thinks she is eating so much to ease any pain. Literally I have a bottle on me at all times. One morning, I timed our early feeding, I started at 7 finished at 10, changed her diaper, put her down for an hour, and had another bottle in her by 11:15 and she didn't stop until 2. No wonder she gained 1/2 ounce per day!! I told this all to our therapist and she goes, "Well that's because you are traumatized."
What? Traumatized? I don't think so. But then she explained it and she is so right. When you learn you are pregnant you are so excited, you go buy the crib, the paint, the bedding, the CLOTHES! You then expect the baby to be in your arms perfectly normal, but sadly that didn't happen to us. No, I do not have post partum depression. People have asked me that, and I don't have it, but I have been traumatized because what I believed would happen, didn't. And it just ticks me off. I am so mad that my sweet daughter can't wear any of the clothes I have bought her. I won't even tell you about the breakdown I had while driving down Classen Ave. one day when I couldn't find any clothes for Caroline that would work for her. Her legs don't like to be moved, so we can only put her in gowns that snap down the front. Nothing over the head because that could hurt her shoulders or her collar bones. I only had 3 outfits that she could wear. I called a very dear friend and she found some in Tulsa and they were literally on my door step the next day! She had them overnighted. I was grateful and thankful. Of course, I am stubborn and have a couple of outfits that I put over her head because the neck is big enough, and I have one footed pj that I put her in the other day, that wasn't too hard to maneuver her legs into. But I am sure the whole time Caroline was thinking I was nutso!
I know Web and I can handle whatever comes our way. I can't guarantee you that we will know what to do once it does come our way, but we will figure it out.
Well this note hasn't been the most positive I have ever written, but it has not been the easiest day. Caroline has been a very grumpy girl, with not much sleep, plus we have a sick daddy on our hands!
While I wrote this note, she woke up twice screaming! God Love her.
I hope you all had a great Thanksgiving! I know we did and we had a lot to give thanks for in so many ways!
Love,
Web, Kristine and Caroline
Ps, please feel free to pass this email along. I know some people have asked if it's ok and I don't care at all. The more people that know about OI, the better. Alos, if you don't wnat to receive these emails please just let me know. I promise you won't hurt my feelings! I know I can be a little overwhelming in them!
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