Discrimination

Today I experienced discrimination for my 1st time. At first, I didn't think of it as discrimination, until I looked up the word.

treatment or consideration of, or making a distinction infavor of or against, a person or thing based on

the group,class, or category to which that person or thing belongsrather than on individual merit: racial

and religiousintolerance and discrimination.

Yesterday, Web and I went to visit a mom's day out program at a very well respected church in our neighborhood. (I will avoid the name of the church just in case, but I am so tempted to throw them under the bus). It was great. We liked the director, we were only going to sign up for 1 day, and we told them everything about Caroline there is to know. Yes, she breaks, but she can crawl, sit, play, swing, feed herself, nap, etc. Yes, we have to be careful when it comes to changing her diaper or picking her up, but all in all she is pretty "normal". The director's attitude was simple. Let's see how it goes, and if they don't feel comfortable then they will talk to us and we will go from there. Done and done. I called her that afternoon and told her we would love for Caroline to go every Friday from 9-2. Of course, Web and I were apprehensive, but we felt confident that Caroline would do well. We even decided to wait until after her next PAM treatment, plus the director agreed I could come in and train the 2 teachers Caroline would be with every Friday. All was well. I asked a couple of friends about nap mats, and just this morning talked to a friend about labeling Caroline's clothes, bag, sippy cups, etc. We were so excited.

Well this morning, it all changed. Out of nowhere, we received a call from the director advising me that she had talked to her pastor and it was decided that they "were not equipped to handle her disability" and that they "can't afford" to bring in a 3rd teacher in the classroom. I was shocked. I just sat on the phone in pure amazement that this was happening. How could they do this to Caroline? She is totally innocent. She didn't ask to have OI. Yes, she has soft bones, but should she be punished like this? Well needless to say after I hung up, I got pissed. I called Web and told him while crying. After talking to him, I just started bawling. My sweet Caroline was being punished and I couldn't do anything about it.

I called the director back up and asked her again verbatim what was said. By this time, I was going to write a letter to this pastor and tell him what I thought. She could tell that this time I was past upset, and I wanted revenge. I want her to feel the pain I am in. Of course, I know this won't happen, but if she can just hear in my voice the disappointment I was feeling.

The thing that upsets me probably the most is this pastor. He has never met Caroline, never talked to us, and got all his info from a 3rd party. If he would have called me, I would have been more than happy to meet him and introduce him to Caroline. He won't even give Caroline a chance.

I wrote my letter and sent it to him with a picture of Caroline attached. I figured he should see the face of the little, innocent child that he was depriving of fun and learning.

So now what? Well Web and I have a lot to figure out. This was a private school we were trying to get Caroline into. OKC public schools are not good. But public schools, have to accommadate children with special needs. Web and I will fight tooth and nail to give Caroline everything she deserves. I will continue to write letters to people that are not educated in OI. I wish this was just a misunderstanding, it would make us feel better. We wish they could at least give Caroline a try. But like a friend told me today on FB, they should not have the privilege to get to be a part of her growth and development. They won't be lucky enough to know Caroline.

I know tomorrow is a new day, and this won't be as hard to swallow. But today sure did suck.

Merry Christmas!

It's been awhile since I last posted. It's amazing how a 1 year old mobile child will change your life. I used to be able to lay Caroline on my bed, and brush my teeth. I was able to put her in front of the TV in a bumbo pillow with some toys, while I took a shower. Those days are long gone. Not that I am complaining. I love it! But trying to get on the computer to update has definitely been difficult. I have had many friends call and ask how Caroline is doing. And I can tell you she is a different child! She is officially crawling forward. She will follow us wherever we go. She is trying to pull up and Web and I just hold our breath. Yes, we want her to continue being strong, continue being a mobile child, but we really don't want to spend our Christmas at Children's Hospital!

Some family members keep asking when she will walk? Well we hope not anytime soon. Her femurs are bowed.

Her left femur is bowed 70 degrees. If she were to stand up on it by herself without the standing frame or without her braces, chances are she will fracture. The PAM is helping her get stronger, and we are so happy about that, but who is to say it will help her enough to stand or walk? Plus, she has only had one infusion. We have many more in our future. Yes, she will walk, but chances are it will be with a walker or something similar to a walker that will help her be mobile.

That's enough about that, she is doing so well! Not only can she point to her ear, nose and belly. But she can point to her hair, stick out her tongue, play with her toes, wave bye, say "dog" and say "light"! It is so fun. I am constantly working on saying, "mommy or daddy". We'll get there sooner than later! She is definitely fun.

Tomorrow she and I are going to try a Gymboree class for crawlers. Last week we did the music class and she was not a fan of the drum. She was also not a fan of the kid that hit her in the head with the tamborine! After the new year, my plan is to start looking at Moms Day Out programs in town, and working with Sooner Start for physical therapy. We have a busy winter ahead of us, but we can't wait to see her grow in both mobility and developmental milestones.

We wish you all a Merry Christmas! I am adding a picture of Caroline with Santa. She is not a fan!

Love to all.

PAM update

Well, I am a believer. I cannot believe how awesome PAM is on Caroline. In the last month, she has come such a long way. She rolls from front to back and back to front. She can get in a sitting position from her belly, AND she is crawling backwards! HELLO. She has never even attempted crawling. She would get on all 4's, rock back and forth, but never did she ever move. We are so happy and so proud of her. She has proven once again that she is a strong and very independent child. She definitely gets her independence from me. This could be a good thing, or a bad thing. I guess it depends on who you ask! She is also getting teeth! She now has 3 on the bottom and at least 1 on the top. I tried feeling to check if there were 2 cutting through up top, but she isn't a fan of anyone touching her mouth. I am not sure if PAM has anything to do with her teething, but all I know is we went from 2 to maybe 4 in less than a month. Did I mention she has DI? I have not quite come to terms with it. I know we will have a lot of dental work in our future, but right now I am just going to worry about the here and now. I can't worry about 5 years from now.

Other milestones Caroline has accomplished literally this past week. (No this is not PAM related)

Caroline can touch her nose, ear and belly when asked. And she loves to clap her hands. And if you say "Good Job Caroline", she immediately starts clapping. Cracks us up. I will change her dirty diaper and say "Good Job Caroline" and she starts clapping as I change it. Hilarious. I know Caroline is not the 1st child to do any of this, nor will she be the last. BUT for all of this to happen in the last month has been so fun. She is like a totally different person. She is like a little girl. She is no longer our baby. It's so weird and fun!

We hope you all had a great Thanksgiving. We were with Web's family and had a good time. Caroline got to meet a lot of her cousins and didn't disappoint in her smiles!

We have decided to stay home for Christmas. It will feel good to not have to pack a suitcase!

We wish you all a happy holidays! I have our Christmas cards ordered, and hopefully they will be sent before 2011! That's my goal at least.

Love to all.

Omaha in a nutshell

Our trip to Omaha was definitely worth it. Caroline tried to make it challenging by not sleeping, which made for some tired parents, but all in all it was a successful trip!
We met a lot of OI parents and their OI babies. It is absolutely amazing to me how not 1 kid/baby resembled each other at all. I guess there is a reason why they call OI children snowflakes, because not one is the same. But as parents we are all trying to get the best care for our child. It was amazing how many parents were told their child would not make it, but yet they are alive and well! It is truly unbelievable the audacity of some doctors. To give up hope like that, is just aggravating. I remember being told, "worst case scenario Caroline will have OI". Well we got it, but thank gosh we weren't told she wouldn't make it. I don't think I would have been nearly as strong as some of the moms that I met.

The OI clinic is definitely a good thing. You check in, sit in your assigned room and doctors rotate to you.
We 1st met with a nutritionist and I can not even tell you how proud she was of Caroline. We had to go through her meals from morning to night and she was so impressed with the food she eats. I guess making her food for the past 6 months has paid off! She is lacking in Vitamin D and Calcium but most kids are, OI or not. So we now give her a vitamin drop every morning in her juice, plus she is now drinking whole milk, so that will help her as well. But all in all, they were super happy with her nutrition. And those of you that know Caroline well, know she does NOT miss a meal. Sister wants her food on schedule, or she will let you have it!

We then met with rehab therapist. I think. I might be out of order, still a little blurry. The rehab therapist was supposed to be with the physical therapist to, but she had a sick child. This didn't make us happy, because Caroline needs PT big time. But we get the whole sick kid thing, but still disappointing. Again, the rehab therapist was blown away by how well Caroline is doing. She can reach, grab, feed herself, sit up on her own (when not casted), roll over, do most everything a one year old is supposed to be doing. We were hoping the physical therapist could tell us how to get her to go from laying down, to sitting up on her own. The rehab therapist gave us some pointers but suggested we reach out to a pediatric physical therapist in our area. I told them there were no PT's that had OI experience, and she said we would find that everywhere. But still call a peds PT, tell them she has OI, and they should still be able to help us out. So tomorrow we go back to our orthopedic surgeons office to HOPEFULLY, CROSS FINGERS AND TOES, take off Caroline's cast and I am going to ask him for his recommendations. Plus I have another feeler out there, PLUS she has 12 month shots next week with pediatrician so going to ask her as well. Hopefully by the time we are back from Thanksgiving, we can start her on some non water PT.

We then met with Dr. Esposito, orthopedic surgeon extraordinaire that everyone talks so highly about. We really liked him. He looked at our x-rays from Caroline's NIH trip back in April, plus the few x-rays that we had to take earlier that morning. (forgot to mention x-rays by 9AM, oye veh. you all know how I feel about those!) Caroline has severe bowing in her left (currently broken) femur. 70 degrees. 70. Take you imaginary protractor out from 9th grade geometry and imagine 70 degrees. It's amazing to me that this is her 1st break on the left femur. Dr. E told us she is a prime candidate for rodding surgery. Which we knew. Her right femur (which has broken twice) is barely bowed. It's pretty much straight but at the bottom of the bone is a slight curve. Her left tibia is 22 degrees and her right tibia is 33 degrees bowed. PLUS, our Sweet Caroline inherited the Partridge hip dysplasia and has that in her right hip. Dr. E said he has NEVER met another OI baby that had hip dysplasia. Glad my genes can stump him!
He did mention that we shouldn't do any rodding surgery until she has multiple PAM treatments, which is what our ortho in OKC has told us as well.
PRIORITIES:
1. PAM
2. Rodding
3. Hip
Chances are we won't do anything with the right hip for years. Like Dr. E said, it's really lowest priority. And let's face it. C won't be walking anytime soon with a 70 degree bowed femur. Can you even imagine putting pressure on that to walk? She would break it all the time. So we get her more PAM and see how much stronger her bones will get.
Dr. E also gave us some other news, that we were never told before. Well we knew she had osteopenia, but still. Caroline has stress fractures on her spine. WHAT??? How can that be? She NEVER cries when she is sitting, on her back, never holds her back. Well poor Caroline, doesn't know that the pain in her back isn't normal. She doesn't know any different. How sad is that? So here is this beautiful 1 year old who is in back pain, but to her she thinks it's normal. I talked to my dad about this in Omaha and he brought up how too much info could make you feel worse. And boy is he right. I could have gone the rest of my life, not knowing this info. They say, with the PAM treatments the fractures should heel and hopefully we should see less fractures. I guess time will tell. But I really could have done without that!

We then met with Dr. Lutz, the endocrinologist and he was so happy at Caroline's OI. Weird huh? He mentioned that she doesn't have the facial features that some OI kids have. This is mainly because she eats! She has muscle and fat! GO CAROLINE! Eat all you want! He said to get her started on PAM asap, and he is going to contact our local dr. here in OKC and that Omaha doesn't need to see Caroline until next November. Done and done.

Off to the hospital we went, C had her 1st IV and finger pricking for blood work. Not sure who it was harder on. Web and I or her! But she was a trooper, got her PAM and the next morning we were back at the airport on our way home. As you can see, it was such a whirlwind of a trip! We are so thankful that we were able to go, and thankful that we were able to meet other OI families. This was our 1st time, and definitely not going to be our last. I guess this seems long, but I promise it's in a nutshell!!
Love to all.

Caroline is 1!

What a great birthday Caroline had! Yes, she was in a cast and I had to literally do some things last minute, but with the help of Nana babysitting the majority of Friday, I was able to accomplish everything. Including a new outfit! As you can see in one of the new pictures I posted! She was the perfect birthday girl. She played the part like a trooper. All her friends and family came and I will talk about her 1st birthday to Caroline for as long as she will let me!

We just got back from Omaha yesterday and we are still gathering our thoughts from the trip. It was very informative, but also very eye opening. We met other families of OI kids and we learned that literally not one child is the same. Everyone is different. It's funny on the OI Yahoo website everyone talks about their OI baby being a "snowflake" and I never quite understood what they meant. But now I get it, not one OI baby is the same. We met 2 different 7 year old girls who both had OI and they are complete opposites physically. But they are both so sweet and so nice. They loved playing with Caroline! It's hard to believe they are living with the same disorder. The girls have been coming to Omaha for years, go to the OI camps and act just like 7 year olds should act. It was very humbling. We also met a 2 year old that is still wearing 3-6 month clothing, and a 9 1/2 month old that is still wearing newborns. Makes my breakdown of Caroline wearing 6 month clothing at 1 year seem stupid. It was also humbling to the fact that we just take so many things Caroline can do for granted. Caroline can hold her head up and sit up without assistance. A lot of these babies can't. Caroline has NO respiratory issues, a lot of these babies do. But what they all have in common is they are the sweetest babies and most resilient babies you will ever meet. You hear stories from the moms of the fractures, surgeries, hospital stays and you just close your eyes, take a deep breath and release. Then you think GOD for giving us our Sweet Caroline.

Once I have digested more of the information from the weekend I will post again. We met with so many people in one short day, that I am still not sure we got all our questions answered, but I know we did a good thing by taking her there.
Thanks to everyone for Caroline's perfect birthday! She had a blast! And Web and I did too!
Love to all!

B.A.D. Luck

I am warning you all now. I am in a BAD mood, I am bitter, and I am mad at GOD. So if I ramble, change the subject and it's hard to follow, rant about something entirely off base, I am sorry. But today has sucked. Today will probably go into the top 5 of the worst days ever. Yes, this sounds like a pity party for me. But actually it's all about Caroline and how she does not deserve anything that happened to her today. So again, I am sorry.

Actually I do not even know where to begin. Today started off like any other day. Caroline woke up happy, she drank all her juice, Web left for work, then Caroline and I started our morning routine. I had a dentist appt at 10, nana was coming over at 9:30 and the morning was beginning. In mine and Web's bedroom we have a Caroline area. She has a bumbo pillow to sit in and a couple of toys to play with. It's ideal. Perfect for me, so I can brush my teeth, do the morning routine, without watching her like a hawk. She was watching Matt Lauer, I was making the bed, all was well at the Browne home. Then all of a sudden, Caroline had spit up all down her onesie and she was gagging and could barely breathe. She had no idea what to do, this has never happened to her before. She is super healthy besides the OI, of course. I immediately pick her up and she is crying hysterically. I think it's because she threw up. What one year old wouldn't be crying?! After about 15 min, she is still crying uncontrollably. I try everything, rocking her, singing to her, walking her, you name it I tried it. She wouldn't take a bottle or her cheerios! So you know something is right, because Caroline never refuses cheerios! I call my dentist and cancel, call nana and cancel, call our pediatrician and schedule an appt at 9:55. I lay her down in her crib so I can get dressed, throw the hair in a ponytail. She is still crying, ps.

As I am about to walk away from the crib I notice her left leg isn't moving. Her right leg, she is kicking, but left leg isn't moving. I call Web, tell him about her leg, but also about throwing up. He decides to come home and go with me to dr's office. After I get some pants on Caroline, I realize her left leg is swollen and hot. This isn't good. But Web and I still have in our head that she threw up and it can't be a fracture. That's not fair, and there is no way on earth it could have happened! SERIOUSLY! She was sitting in her boppy pillow, watching Matt, playing with her monkey toy. She didn't fall over, roll over, she was even on a solid surface!!!! We load up the car, and I keep telling Web that there is something wrong with her leg. We then start wondering if we should skip the pediatrician appt, and just go straight to the ER. Last minute, we decide to go to ER.
Caroline is still crying.

We get to the ER at 10, they immediately bring us back. And here we go. Yes, she has OI. Not sure if she has fracture. Yes, we have been here before. No she didn't eat anything. We always like the dr's in the ER and they are very thorough, but when your daughter is screaming you just want to skip the questions and move on to x-rays. After much sitting and waiting we take the x-rays and wouldn't you know it? They don't see a fracture, but her legs are really messed up. SHE HAS OI. Yes, her legs are bowed, yes she has OI, yes we have seen them. They call ortho dr on call. I stretch the truth and tell the ER dr. that our ortho, Dr. Herndon likes to see her and wants to know what is going on, not the on call resident. HA! Good news is the on call resident was in the OR with Dr. Herndon. They sent him the x-rays and asked us to meet him at his office at 1 so he can cast her.

LIfe would be so much easier if we could just skip the ER, but oh well. What's 2 co-pays in 1 day?!?!? UGH.

By the way, at this time she has had Tylenol with Codeine and not crying. But when she sees Dr. Herndon and his assistant, Anthony the tears were back on. All in all, Caroline cried for 5 hours today. 5 HOURS!
When Dr Herndon touched Caroline's leg she screamed bloody murder, so he didn't hesitate to cast her. She has a full body cast on her left leg. For some reason this cast is thicker than the others, and at 1st he said to come back in 3 weeks, but changed his mind to 2 weeks. I hope in 2 weeks it comes off.

The 2 things on my mind were Omaha trip next week and of course, her 1st birthday.

After talking with Dr. Herndon, he had no problem with Omaha. He said to go and get her started on PAM.
When we got home I called Omaha and they also said there was no problem with her coming in a cast. We probably won't gain all the benefits of physical therapy, but we can at least ask questions. A very good friend suggested that we upgrade our tickets to 1st class, but since we are flying Southwest that's not an option. So this afternoon I booked Caroline her own seat. No she won't sit in it, but at least Web and I can have the 3rd seat to lay her down and let her relax. Sitting on an airplane with a baby is hard enough, let alone one in a body cast. I hope none of y'all are flying to Omaha next week. If so, wear ear plugs. We will be THOSE parents on the plane with child.

Then there is her 1st birthday. I think about it and bawl my eyes out. This is so not fair. Caroline has had fractures on mom's day, dad's day and now her birthday. I have been working so hard to make this day special for her. So what do we do?
Well we still have the party. It's not fair to her to deprive her of her 1st birthday party.
We find a way for her to sit in her high chair. This is the 1st break where she is eating big people food, so it was a challenge, but I think we figured something out. She can't sit up without human support.
BIrthday outfit won't work, and it was so cute! If you saw her invite picture on FB, then you saw her outfit. Miss October with a tutu. TOOOO CUTE. Here's the deal. Caroline is petite, she only weights 16 lbs. She pretty much wears 0-6 months on bottom and 9-12 month on top. Well what the hell am I supposed to put on a one legged body cast?!
Tomorrow I shop. I think I have a onesie that will work, then I need to find a tutu. Because a tutu can cover a lot of her cast for pictures. I don't want her 1st birthday to be about her cast, but her smile!
I know Web and I and Caroline will survive but it really just pisses me off. My plan on Sunday was to take her to a pumpkin patch and have her pictures taken with pumpkins, but now we can't do that because she can't sit up on her own. This body cast sucks.
As you can see, today sucked.

Almost 1!

Today we went back to the orthotics clinic. I was a nervous wreck, but did much better than I expected. We got there and they brought in her standing frame and braces. As soon as Caroline saw them (the doctors) she started crying. They didn't even touch her legs, did nothing, but she immediately broke down. She is super smart like that! The doctors asked if I had brought her socks and shoes. Ummm, no. No one told me she needed socks and shoes. Why would I bring them? Heck she doesn't even own shoes that aren't dress shoes and cute. Needless to say I was not happy. NO ONE told me to bring any. So we have to go back next week to fit her in the standing frame. There is no way to do it without her in tennis shoes. But we were able to try on her orthotics without tennis shoes. She hated them. Well she hated the doctors touching her legs. I am not even exaggerating when I say she would immediately start crying when they walked in the room. They aren't too ugly, I have definitely seen worse.
Tomorrow Caroline and I are going to find some tennis shoes that are wide enough to fit the braces in. I am not happy that she will be in tennis shoes all the time. I am going to need to find some dress up shoes that are wide so she can wear them with the braces as well.
All in all it was an ok day. The standing frame didn't look all that fun, but we will see what she thinks of it next week.
Next Monday we also go to a physiotherapist that will hopefully show us some techniques to help Caroline crawl, walk. Then in 2 weeks we leave for Omaha! This has been a crazy month of dr. appts!
I will update again next week!
Love to all!

Fayetteville Or Bust!

Web and I are going to take the plunge. We are going to leave Caroline overnight with someone else. Web and I are going to leave our sweet angel and not look back. We are going to celebrate a friends wedding. And let me tell you, if this friend wasn't super, duper special I would have gone on my own or just sent a gift in the mail! But she and her fiance mean a lot to us and we are going to leave Caroline in capable hands. She will be with her grandma Saturday and Saturday night, then nana on Sunday. We have it all figured out. Of course, they know how to feed her, change her diaper, hold her. We have all had lessons. And of course, we trust them. Yes, I know Caroline will get a cookie at lunch, when I only give her 1 at dinner. Yes, I know she will be rocked to sleep, when I insist that she just get laid down and put to bed. I know these things, and I am ok with it. But what happens if she breaks? Well don't kid yourself. I have a list. Who to call, where to go, what to take. We can't just leave without tons of info, even for one night. We have certain doctors that need to be notified, she can only go to Children's Hospital (she is in their system as OI baby), and a note that says Caroline has OI, do not call Children's Services for abuse. It's all too much really. And we are just going to Fayetteville which is only a 3 hour drive, but still it seems so far away. Some of you might think we are crazy that this is our 1st time to leave Caroline. We have spent time away from her separately, but never both of us. We will be fine. Caroline will be fine. We will be fine. I think if I keep typing it we will be fine!
On another note, I just wanted to say thank you. I received so many emails, texts, phone calls from my last post. My pity party lasted longer than most, but I think I am doing better now. Of course, next Wednesday we start the whole process over again when we get the standing frame and the AFO's. But I am hopeful that she will not be nearly as fussy as last time and we can all leave there without tears. That is my hope. And I am also hopeful that she will learn to walk!
So again thank you all very much!
I will update you all next week when we are back from the orthotics appt!
Love to all!

Ortho Clinic

I hate the ortho clinic. I have officially decided I do not like it there. And Caroline doesn't like it either.
Web and I took Caroline with absolutely no idea what to expect. We knew that our orthopedic dr. is ready for her to stand and so are we, so we had 100% faith in the appt. And I guess when it comes down to it, we are doing what's best for Caroline. But I am so sad that she has to wear braces on her legs. Not only am I sad, but I am pissed. Caroline is such a trooper. She was all smiles and happy to be there. Until we had to have her fitted for her new braces. My gosh, that girl can cry and scream like no one's business. Thankfully the CO that worked with us, has the patience of a saint. Caroline sat in my lap and he had to plaster both of her legs to make her braces. They are actually called AFO's, Ankle Foot Orthosis. Caroline kicked her legs, kicked the CO's hands, plus kicked the CO's tech assistant! She was not wanting anyone to touch her legs. I have no idea what will happen in 2 weeks once the actual braces go on her legs. I am sure that will be another battle. And of course, once that was done, we had to lay her down and they had to take measurements of her so they can make her Mark 2, or what we will call her standing frame. This will be built around her size and we will use at the house to help her stand on her legs. Which she is wanting so badly to do. And her AFO's (braces) will do the same thing. They will help her stand and walk and of course, that is what we want for Sweet Caroline. I thought I would handle this better, but I am a basket case. As soon as I got home and put her down for her nap, I went into my bedroom and just cried. I cried because I am sad Caroline will be stared at. I cried because she doesn't deserve braces. I cried in frustration because there is nothing I can do for her to take it all away. I am so damn pissed off at OI, I can't even see straight. This is harder for me than the casts because I know that these will be on her much longer. Oh and then we had to pick out a pattern for her AFO's, and of course, they were all UGLY. So not only does she have to wear braces, but the pattern is ugly. Well it was the cutest pattern they had, but STILL. I mean for the love of GOD and all his disciples, if you are going to make a cute child wear ugly braces, the least you can do is have better patterns! So I cried about that too!
As you can tell, today has not been a good day. Matter of fact, it just sucks.
BUT some good, miraculous thing happened today. As I was in my bedroom crying my pity party, the doorbell rang. At first I was mad because I forgot to hang my "DO NOT RING, BABY SLEEPING" post it sign. Then I was mad, because I had to answer the door. But then I was excited because I saw UPS truck! Wonder what I ordered?!? It wasn't what I ordered, it was what I received. A very, very wonderful friend that lives in Tulsa and went to college with me sent the most perfect card and the most perfect devotional book. I couldn't believe it literally arrived as I was crying about Caroline. it's like one of those stories that your minister tells during the Sunday morning sermon. I opened the card and it had the best words of encouragement anyone could ever give me. I am crying just thinking about it. I haven't had a chance to look at the book in depth, but from what I can see there are devotions that you read every day. I can't wait to start it! So, hard lesson learned today.
Yes, my daughter will have braces and yes she will be stared at. And yes, the wrath of Kristine will more than likely strike some sweet, innocent stranger when they stare at Caroline. But I will just look at the card and the words of encouragement that I received today and be thankful for my family and my Sweet, Sweet Caroline.
Love to all.

11 months old today!

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

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.

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!

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

HOORAY!

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!

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

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!

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

Spontaneous Mutation

Spontaneous mutation, spontaneous mutation. Those 2 words are in my head, all day long. I will be driving, reading, talking on the phone and in the back of my head all that I hear is spontaneous mutation, spontaneous mutation. Almost that if I say it enough, then it will happen. It will be the answer we are praying for every day. I was even talking to a friend on the phone the other day and told them this is way worst that waiting on Caroline's skin biopsy results. A. We knew it would take months. B. We had no date to expect the results. and C. Let's face reality, we knew no matter what the results were still going to tell us she had OI. No we weren't expecting the severity of it, but still we knew she still had it. With the blood results, we were told we would know when we are there next week. So, we have a deadline. We will know next Thursday if Caroline's OI was spontaneous mutation, or either Web and I are carriers. SCARY. I even emailed NIH contact this week to double and triple check that they received our blood. She said yes, and that our personal tech was already testing. YIKES! So I lay in bed at night staring at the ceiling and all I can say is spontaneous mutation. Like GOD will finally get tired of me saying it all day long, and just raise up his arms and say, "FINE! Just make it spontaneous mutation. SHUT THIS GIRL UP!" Of course, I know that won't happen, that this is all science that I do not understand. Testing that will make no sense to me when they explain it. All I want to hear are those 2 words, spontaneous mutation. You will probably be saying it by the time you read this blog! HA! So keep saying it, praying it, chanting it, signing it, whatever you think will work.

It's crazy to think that Web and I started this crazy journey of OI almost 9 months ago. It seems like it should be longer than that. But it also seems like we have so much more to learn. I am dreading our trip next week. Not the flying part, Sweet Caroline is a pro at flying. But the full body x-rays suck. Suck more for Web and I. But I am excited to meet with our physical therapist again. Hoping we can get some advice on crawling and walking. Poor daughter, she is wanting to crawl so bad, she gets on all 4's, looks up at Web and I then decides not to try. It's almost like she is saying, "Thanks, but no thanks. I like this view and will be just fine laying here." Most babies you can hold under their arms and they can stand on your legs, or by now at 9 months they are holding themselves up on a coffee table. Not Sweet C, not even close. Her femurs are so bowed, I don't know how she will ever be able to stand. It's so frightening to think about. So hopefully the therapist can give us some good tips and we can start reaching some milestones! Tired of reading all the baby books and seeing how far behind Caroline is doing.

Well that's all for now. I will update next week once we learn the next path GOD has planned for us. I really hope it's the original plan I already had in place!
SPONTANEOUS MUTATION!!

Genetics 101

Oh how I wished I had paid better attention in Science class. Heck when it comes down to it, I couldn't even tell you my science teachers names! Hated the subject. Wanted nothing to do with the subject. So imagine how I am feeling when the leading doctor of OI calls with morning with Caroline's skin biopsy results. "Her structural change in collagen leads us to believe she is for sure Type IV. Position 589, mutation chain is 1000 long. We checked her alpha 1 change and the clinical outcome is broad." HUH? And that's just from the notes that I took. I wish I had it recorded. And I wish someone could have seen my face. When we visit with Dr. OI in August, I am going to need a picture. Probably multiple pictures.

All in all, we learned that Caroline is for sure a Type IV OI patient. We already knew that deep down, yes we wanted the clinical testing to be wrong and her be Type I, but oh well. I mean let's face it, things haven't exactly gone as planned from day one, so why would things start going our way now?
We did learn some interesting facts. There are only 25 other individuals with Caroline's mutation. Think about that. Out of all the people in the WHOLE WIDE WORLD, Caroline and 25 other people have the exact same mutation. That to me sounds HORRIBLE. But actually it's a great number. It's a lot as I was told today. That means there are 25 other people that our doctors can reference. Dr. OI told me today that some patients don't have any other cases out there, and they start from scratch, so good news!
Not so good news, with the type of mutation Caroline has, more than half are classified as Type III OI. (this is lethal) The other half are mid Type IV to on the brink of Type III, also called III-IV. So technical huh? Mid 4 is the best of these 25 individuals. Laymans terms? Caroline could possibly be on the more severe side of Type IV. We were really hoping for the milder side. But as Dr. OI told me today, Caroline will declare herself as she gets older. And if we stay with NIH, then they will try to keep the severity down.
So now what? The infamous skin biopsy results are in, what do we do now? Well, Web and I get blood work done. We are hoping to do it early next week here in OKC, then have it overnighted to our personal lab tech at NIH. (was told we had one today, pretty cool huh?) She will then test our blood, and HOPEFULLY we will know if C got this horrible OI via spontaneous mutation or if Web and/or I gave it to her.
Of course, I believe she got it from me. I mean, I am 35 years old and already had hip replacement. Hip dysplasia runs in my family. If she is going to get it from one of us, more than likely it will be me. I hope to GOD I am wrong. As you know Web and I want more babies, but that decision is not in our hands. They are hoping to have the results to us by our next appointment.
So as you can see today has been a crazy morning filled with crazy emotions. Yes, we are glad we got the results. No, we are not happy she has Type IV OI, but it is what it is. I guess now we can't put off doing our online research. I kept telling myself I didn't want to read about things that might not pertain to Caroline. But now we know she has Type IV and we can read all the gory details.
I'll continue to keep you updated. Thank gosh I have this blog so I can vomit my feelings. Much cheaper than a therapist!
Love to all!

Home Sweet Home?

I am not doing well on keeping this blog updated! One of these days I will get better. One of these days, Sweet Caroline might let me have a minute to myself so I can update! She is starting to love sitting in her pack and play and playing with about every toy known to Babies R Us. She still isn't sitting on her own, but a little help with the Boppy is great! And it gives me time to do the basic things, like laundry, brushing my teeth, making the bed. It's amazing how sitting on their own helps out in so many ways. I literally had to read the last post to see what I talked about last. Sad, isn't it? CRACK! is healed. Sorry, but every time I type the word CRACK! I think of Whitney Houston saying, "CRACK IS WHACK!" Anyhoo her left femur is healed! She has her toes in her mouth constantly and she isn't hesitant with her leg. It took longer than 7-10 days, I would say closer to 14 days before she really let me touch her leg. Thank goodness for dresses. Otherwise, she would be in a onesie every day of her life. So good news, right now we are fracture free. We are back to doing tummy time too. She isn't crawling yet, but that is fine by me. We have no idea what will happen once she becomes mobile, and I really don't want to know what will happen. So hoping maybe we can skip the whole crawling, and move straight to walking. Of course, then with walking we will have to work with braces, stabilizers, or maybe even a walker. We just aren't sure right now. So really it's a no win. BUT we can't wait to watch Caroline learn her own limitations and tell us what she can and cannot do.
Enough about all that. I had a great time at girls weekend! It was exactly what I needed. Once I was on the road, I was fine. Of course, I think I called Web from the road about 10 times thinking of things he needed to know. Like I really needed to call to tell him Caroline ate apples at lunch. But as soon as I made it to the lake it was awesome! We celebrated and had so much to be thankful for. One of my bestest friends became engaged and she was able to tell us all in person. SO MUCH FUN! Of course, with telling us, she got 12 opinions on where, what, how, when she needed to get married. Opinions I am sure she listened too.
AL was a huge success as well! Flying by myself with Caroline was super easy. And a shout out to all the people that boarded behind me and had to help me close the stroller! With Caroline in one arm, my carry-on and purse on the other arm, I couldn't break down the stroller, so I always had to ask the person behind me to help! It's amazing all the things you need to pack for one week for an 8 month old. And a lot of the stuff I needed, I bought once I made it to AL! But she was the best dressed baby, and was loved by so many people while we were there. My grandma absolutely loves her! She thinks Caroline loves the south and should live there full time. If only! Caroline would be the cutest little souther girl!
On a sour note, Caroline's dream house might not happen. We are hopeful, but just not holding our breath. Apparently there is a drainage problem at the house, and the house flooded! We are meeting with some experts this week to let us know what we should do. We were supposed to move this week. Good thing we procrastinated on packing! I am so ready to get Caroline in a pool everyday. We put her in a pool at the beach, and took her to a pool yesterday and she loves it! Loves being in the water and splashing around. Hopefully this time next week, we'll have better news. I guess it's better to learn about the drainage problems now than later when we actually own the house. That could have sucked. And luckily we have not sold our house, and we are not homeless!
Caroline still has not cut a tooth. We are still hoping that she won't have DI. I think about it daily. She has such a cute smile and it would be such a shame for her teeth to be gross. I guess time will tell.
We hope you all enjoyed your 4th of July Holiday! We had a blast!

CRACK!

Happy Friday! Thank goodness the weekend is here. This has been the longest week ever. In more ways than one.
As you know from my last post, we went to Children's ER they didn't see a fracture. So I called our ortho's office Monday morning, and our dr. was in surgery all day. Tuesday he was in his Bethany office, but a PA was able to look at her x-ray. He thought he saw a fracture and thought it would be a good idea to bring Caroline into the office 8AM on Wednesday morning. GREAT. As you can imagine our emotions were on a roller coaster. Here it is 5 days after her bath and now they think there might be a fracture?!?! Yes, they can show up 5-7 days later, but still, we just missed 5 days that her leg could have or should have been in a cast! What kind of parents are we? Of course this is what I was thinking, Web kept saying there was no way she was going to get another body cast. She was kicking and touching her BOTH her feet. So then I bucked up, positive thinking only. Then Web got upset thinking about his daughter in another body cast. It was quite the Tuesday night. And of course, in the back of my mind all I kept thinking about is my 12 college girlfriends going to our lake house this weekend, plus our trip to Mobile the following week. How could I even think about leaving my Sweet Caroline for the weekend in a body cast? How could I fly with her? Not that it would have been tough physically, but emotionally. All the stares we would have received, I know I would have lost it! So Wednesday morning rolls around and we are there right on time. We go back, Dr Herndon looks at the x-ray comes back and doesn't see a fracture! THANK YOU LORD YOU ANSWERED OUR PRAYERS. But he did see Caroline's hesitation in her leg, so he assumes there is more than likely a crack. UGH. CRACK? No one told us about cracks. Good news is he doesn't cast cracks. So we just let Caroline heal on her own and we all have to be extra careful with her left leg. Little movement. And Caroline is pretty darn smart. She keeps it tucked in on certain positions. Dr. Herndon thinks 7-10 days she will be better. PERFECT! Right on time for me to fly to Mobile and she can meet her great grandma! Hooray! (and other family members that are dying to get their hands on her!!)
On another note, I am FREAKED OUT! I am leaving for my 1st time EVER without Caroline. 2 nights without her. I had a mini cry fit this morning. When dad was in and out of the hospital earlier in the year, I never missed a night with Caroline. No matter the time or place I was there for her. What if she doesn't remember me? What if she fractures? You name it I was thinking it. But I know she is in good hands. Web is an excellent daddy who loves his daughter so much that I know they will have a great time. And I will be with a great group of ladies that will keep me entertained.
We dodged a bullet with the crack and we are so grateful! Have a great weekend everyone!

Close call

Well what a weekend. 1st of all let me start off by saying Happy Late Fathers Day! I hope everyone had a great day! Web and I counted are blessings. We were so happy to have Sweet Caroline to celebrate and having my dad ALIVE was icing on the cake. My dad even came to OKC to celebrate with us. We were supposed to meet him in Tulsa, but plans changed for us. Just when you think life is slowly moving back to normal, a collision of sorts happens.
We started Fathers Day weekend early at the lake. Web loves the lake. If it were possible, some way some how, he would find a way for us to live there full time. I love the lake as well, but not nearly as much! Especially with a 7 month old! Days of laying out on the boat, drinking an adult beverage, listening to music is a thing of the past. We were all at the lake by Thursday evening, had some dinner, and called it an early night. Our plan was to take C out on the boat in the morning and see how she did on it. We wanted to do it before the weekend rough waters started. Of course, nothing goes as planned and by the time we got around Friday it was noon and already 93 degrees out. Not going to take her out. So we decided we would take her out that evening. Once the sun was going down and the random boaters out on a Friday were home. C showed us that once again, her parents are nervous wrecks all the time. Well, Web more than me. Yes, I am a nervous wreck, but for some reason on this boat ride I wasn't scared. Sweet girl had so many pictures taken of herself, that she now knows to smile on cue for the camera! Well I think so. Others might disagree, but she seems to smile for my camera! We all had a great time on the boat. Me, Web, Caroline, Nana and Pop. Everyone was happy to see that C was having a good time. Of course, we didn't want to "rock the boat" (horrible pun I know) and cut the boat ride short. C had on layers of sun screen, and had to have a bath. Unfortunately, C doesn't have her bath tub at the lake. And she still isn't sitting up on her own. So, Web kept his bathing suit on, and got in the bathtub with her.
Everything was fine. C was laughing, kicking, splashing having a good time. Web was keeping her upright. All was ok. She was smiling. Then all of a sudden out of nowhere, we hear the loudest, piercing scream. It was so loud. I immediately grabbed her out of the tub. She is still screaming. I asked Web if he noticed anything while they were in the tub together and he felt nothing. So what could be wrong? Once she did calm down, Web tried to get her to sleep, but she wouldn't co-operate. She stayed up until 10 PM that night. Never has she stayed up that late. Web noticed that she was not using her left leg. It was immobile. She had it tucked in and wasn't going to let us touch it. GREAT. Here we are in Cherokee County and our daughter isn't moving her leg. We decided to let her sleep, and reassess in the morning. 6 AM C is crying. She is miserable, we are miserable. Poor Kelsey was miserable! After much discussion, we decided to pack up and go back home. C needed an x-ray. It's funny, we both knew that was the answer. But it took us 2 hours to leave. We didn't want OI to win. Mother's Day weekend and our 1st anniversary were ruined by a broken femur, why in the world did Father's Day have to be ruined as well? It wasn't fair and we were not happy. Once again I found myself cussing out OI.
By 8AM we were on our way back home to OKC and the Children's Hospital. I gotta say that place is pretty efficient. I was still at the front window finishing paper work and they called C's name to go back to an exam room. Of course, you have to deal with the tech and tell them C's story. Then a resident comes in and she thinks we need to x-ray her whole body. No, we don't. We know our daughter. Her arms and right femur are ok. It's her left leg. But she is a resident and I am sure bored, since we were 1 of 3 exam rooms full. Why would we want to expose C to more radiation than what is necessary? So she was going to "discuss" it with the attending on duty. You do that Dr. Resident, because no matter what anyone says, we were not going to let them do a full body x-ray. The attending dr. came back, understood that we knew what we were talking about and ordered left femur only. DUH. We finally get to x-ray and sadly we knew exactly what to do. 2 x-rays done and we were back to our room waiting.
Well get this, the attending dr. couldn't see a fracture. She did however mention more than once, that C's x-rays are pretty hard to read. Well no shit sherlock, she has OI. Her femurs are bowed. She has had more than 15 fractures in her short life. I swear if I ever have to work, I am going back to radiology school. I think I can read her x-rays better than doctors! The attending decided that she needed the on-call orthopedic dr. to look at her x-ray. He was not a pediatric ortho, but still he looked at her x-ray and didn't see a fracture either. So yeah! And I should point out, that C was moving her left leg a little more, but definitely still hesitant. Also, fractures can take up to 5-7 days to show up on x-ray. The dr. told us to contact Dr. Herndon (C's ortho) Monday morning and we were on our way home. Yeah! And we were only at the hospital 2 hours! We were so elated that she didn't leave in a full body cast. All I kept thinking about in the hospital is how unfair this was to us. Web wanted to spend his 1st father's day at the lake. I have a girls weekend at the lake planned for the following weekend. We have been planning it for 4 months! Plus, we are leaving for Mobile, July 1st. How was I going to do any of it, with C in a body cast? I know my friends would have understood if the girls weekend was canceled. But how unfair to me! I want this weekend. I need this weekend. And my grandma's 90th birthday is July 3rd. She has yet to meet her only great grand child. How was I going to explain not going??!?! Yes, she knows she has OI, but still she wants to meet her. And I want see her too! It just wasn't fair!
So we dodged a bullet. Well at least so far. I am pending a call back from our dr. once he looks at her x-ray. C is slowly moving her left leg. Not much, but more than yesterday. Web and I are extremely grateful that she is not in another full body cast. The thought of her taking more steps backwards in her development makes me ill. She is slowly sitting on her own, but definitely needs more daily practice.
All in all, Web had the best father's day! His daughter was healthy and no matter where we are, as long as we are together as a family, it's a good day. No, we weren't at the lake, and yes it was super hot and water would have been nice, but we are still pretty lucky parents! Love to all!

Improvement

Hey! Well it's been 2 weeks and Caroline had definitely made great strides on her motor skills. On the last post, I mentioned that she would not kick her right leg. Well a few days after that post, she was kicking it! It's been great watching her in the bath kicking and splashing like she used to do. She is also putting her toes in her mouth again! I can't believe in 2 weeks she has gone from laying on her back not being able to do anything, back to where she was when she broke her leg. It's like development on speed! It's been very fun watching her progress. She can sit up with a pillow behind her. She is just dying to sit up on her own. She tries all day long. I recently bought some toys that she can play with sitting up, and she is liking them so I am hopeful that will help in her strength to sit up. I guess we'll see. I also got her in a pool for her 1st time. In the beginning, she was a little apprehensive, but she finally figured it out. We plan on putting her in a pool daily, so she better get used to it!
Web and I have put in an offer on a house for Caroline. Actually we call it Caroline's house, because it's everything she needs. Pool for her therapy. Carpet in her room. Actually carpet in all the bedrooms. And her bedroom is directly across from ours. We can see her crib from our bed in our new room. Poor thing, won't be able to hide from us! But we need to be close to her, especially when she starts standing up and walking. Unfortunately or fortunately, however you see it, she has yet to roll over since the break. Seriously, she is the smartest child. It's like she knows that's how she got the cast last time and she won't even try it. So, Caroline won't be crawling anytime soon. I can barely get her to do tummy time without throwing a fit. Oh well. I'll just remember the good developments right now, and worry about the others later!
I think I am going to check out a Gymboree class next week. Just to see what they are teaching babies, and maybe enroll Caroline. I would be doing the class with her, so we would definitely know her limitations. I am also starting a moms bible study next week. It's geared for moms. Bringing GOD into your everyday teachings/lessons to your children as they grow. Plus, I am hoping it will improve my spirituality with GOD. There are many times when I want to curse him for putting Web and I through this unknown with Caroline. I know, people say that we were chosen by GOD, yada yada. But sometimes, when your daughter is crying and you have no idea how to console them because they are broken you just don't believe it. So hopefully this bible study class will be the ticket! At least on the right track!
Web and I hope you are enjoying your summer! Ours started rough, but we are doing much better! We can't wait to move into our new house and swim! Party at our house, if you all are ever in OKC!
Love to all!