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.