Cryfest at Hobby Lobby

Well here we are. It's been almost 3 months since my last post and a lot has happened. Nothing really earth shattering, which has been extremely nice. But in the grand scheme of things we have been very busy! Robert is an 14 month old, walking, running, screaming, kind of talking, size 18-24 months wearing boy. He absolutely loves his sister, and loves pulling her hair. He loves his daddy, loves to give hugs, and slowly learning where his nose is on his face. Sadly, I'm the bad mama who gives him his allergy meds, deals with his nasty diaper rash, and makes him take a bath when he'd rather play outside. But he still can run up to me and reach out his arms and give the best hugs. He is such a sweet, handsome boy and I can't imagine him not in our little family. Here he is on picture day. Is he not adorable?!?!

Web and I worked out the kinks on having a child with a broken leg and a one year old who is jumping everywhere. Mainly you just each take a kid and pass each other in the hall! But Caroline being the smart child she is helped us by telling Robert not to jump on her special bones. I look forward to the day that Robert knows what that means and maybe just maybe we can hang out as a family of 4 on our next break! We took Caroline to Omaha in October for her annual clinic appointments and we received an EXCELLENT report! I told many friends that on our drive home Friday I literally felt like the weight of the world was not on our shoulders. That for the 1st time, I feel like we are finally doing things right. It was also our 1st time to be in Omaha without a cast! This was HUGE! The infamous Dr. E told us that Caroline had his poster child legs and he couldn't be more proud of her. Now I am sure he tells many families this, but it was so good to hear. He commented on how awesome her hip still looked and how her legs are super straight! Needless to say we were overjoyed! Here is a picture of Caroline with Dr. E and some of our awesome friends. As you can see, Caroline did not want to be in the picture, she wanted to play!

She is literally running out of Dr. E's arms! He couldn't be more proud! So. Why the cryfest at Hobby Lobby? Well our awesome nanny sent me a picture of Caroline this morning at her Tippy Toes class. Nothing unusual at all, she regularly sends me pictures or texts with updates. She knows I constantly worry, but that I try to put up a good front! Tippy Toes is her dance class that she goes to once a week. I sat in the parking lot, stared at the picture and the tears just started flooding my face. It was this week last year, that Caroline broke her right femur at church and Dr. E squeezed us in his schedule and she was having another rodding surgery. It was this week last year that she was 2 and still not able to walk. Now look at her! She is not only walking without the help of an aide, but she is DANCING! Like full on dancing. It is such a wonderful site. Yes, we have seen her dance before but for some reason today just really touched my heart. I have met some mothers recently that have been going through so much more than I can ever possibly imagine. And their faith and love in God has made them into a stronger mom than I could ever be. If I could have half their faith and love I'd be a lucky person. So as I'm sitting in the parking lot at Hobby Lobby, I think of all my friends and family these last few years that have been my rock, my sounding board when I just needed to vomit my fears and concerns, my shoulders, aka phone calls, when I just wanted to cry and I didn't care to hear their opinions and they respected that wholeheartedly. They just let me be me. Web and I are blessed beyond a shadow of a doubt to have the support system we have. So what did I do after my cryfest? I laughed my butt off at myself! I mean the person next to me probably thought to call the cops and have me committed! I even talked to one of my best friends, on the phone, in Hobby Lobby and didn't even tell her about it because I honestly couldn't believe it myself! In case you're wondering what is this pic that triggered such craziness? Here it is. And trust me I have much better pictures and videos of Caroline dancing but this one today made me the most proud.

Thank you all for catching up with our little family. Love to all!

5 words I didn't ever want to hear

"Mommy, Will I ever walk again"? Seriously? I knew I would hear that question one day, but never from my 2 1/2 year old. Yet another validation that she will be brilliant and I will need to pay for tutors to help her in homework, because I will be of no help. Last week, Caroline was being your average 2 1/2 year old, trying to turn on a light, lost her balance, fell and broke her left tibia. If you look at it on an x-ray it's a very small fracture. But like our infamous Dr. Esposito, the great ortho man, recently told us, "a break is a break, and a fracture is a fracture. It doesn't matter the size, it still hurts". (Something along those lines, I might have had a couple margaritas beforehand and can't quite remember the correct quote!) But she is quite the strong trooper. She hasn't been on pain meds since Saturday, just a little Tylenol at night, because she has started bottom scooting and one leg crawling around the house. She can point to the exact location of the fracture on her leg, and she is very hesitant with it, and tells anyone that picks her up to be gentle. And poor Robert, he has no idea why Caroline went from playing with him, dancing with him, and taking a bath with him to absolutely no contact. He is all boy and wants to pounce on her. Web and I spent the majority of the weekend apart, each with their own child. When she said those words to me today, I just didn't know what to say. Of course, I told her she would walk again, but I was so sad that she even had to ask it. I know OI is much harder on me than Caroline. I totally understand that, but it absolutely makes me so mad and sad that we even have to have these conversations. So as I was putting her in the car seat after a special treat I kept my tears hidden and told her that yes, she would definitely walk again, and that soon she will be back to running and dancing at school with her friends. I must be accepting OI a little more though because I actually took Caroline to school today. I had our awesome nanny/1:1 aide come to the house yesterday to see what she thought about school plus to show her how to change her pull up because she is on the big girl potty now. She thought it would definitely be ok to take her to school and knowing she would be with Nanny Angel did make me feel better. I did go to her school yesterday and talk to her teachers and they both agreed that as long as Miss Angel was with her at all times that she would be fine. I told everyone to call me no matter what and I would pick her up in a heart beat. Another reason I took her to school is because when this happens when she is older, she won't be able to miss every time there is a break. Maybe a day here or there, but I really don't want to start in that habit. Of course, I hope the breaks are few and far between and we don't have to deal with that. (Our last fracture was 9 1/2 months ago, I was so hoping to make it a full year). We are truly blessed have a nanny that is not afraid and 2 teachers that care for her unconditionally. I hope next time Caroline asks me a question like that I will be a little better prepared. Probably not, but I can at least be hopeful. And hopefully by next week, she'll be walking with her walker. We keep telling her that as soon as she's ready to try we will help her, but she thinks as long as there is a splint on it, she can't do it Another obstacle we will need to figure out! Next week is Robert's 1st birthday and I cannot wait. He is such a handsome boy that loves to smile for the camera! We will celebrate with family and lots of cake! Thanks for everyone that has prayed for my sanity, sent gifts, texted, brought dinner, it's truly been a huge blessing. Love to all!

2 steps forward, 1 step back

Well, just when you think you have made progress, BAM, you go backwards. We finally, after fighting to get Caroline's PAM treatment at the infusion center at Children's Hospital, had our PAM treatment today. I didn't make a big deal about it, because I'm tired of OI. Caroline has been doing so well lately, that I'm afraid I'm going to jinx us. She is running. RUNNING. Needless to say, the less I talk about it, the better I think she will do. Weird? Probably. But I don't want it to define her or us. Today we went to the infusion center, and the infusion nurse got her IV started in 1 stick! Whoah hoah! So flipping excited. That only happens when we are in Omaha. And one of the main reasons we moved her infusions to the infusion center was because we wanted someone with experience. We had heard every excuse in the book on why other nurses could never get a good vein. I think the last one was red heads have such pale skin that it's hard to find a vein. Really? I have no words. So hooray! We went to the infusion center at 8:30 and the IV was in her at 9. All was looking good. Well fortunately, the doctor we are working with at Children's is using Omaha protocol, BUT, will not start the pamidronate until her initial blood work is tested. It took them 3 hours!! ARE YOU KIDDING ME? I'm getting worked up just typing this out. I was livid. After the first 1 1/2 hours, the infusion nurse came to us and told us that we had to draw more blood. WHAT?!?! By this time I am red. I called our wonderful Rose in Omaha and she calmed me down about the blood work. Told me that they could work in parallel and we could start PAM. Well our doctor here wouldn't do it. I immediately called and left a message. I'm talking to the nurse trying to figure out what happened. All while Caroline is playing so well, but I can tell she is so done with the toys. She wants to go home and play with Robert. She doesn't want to be there anymore. Long story short, 12:15 they finally start the PAM. 12:30 Caroline is crying because she wants to be home. Pretty sucky. I have an outline of the blood dilemma and there is quite a few minutes of missing blood. Blood was sent to the lab at 9:10 via the tube, but the lab claims they didn't get it until 9:50? So where was it for 40 minutes? Just floating around the hospital? At 10:25 they called to say they needed more blood, by 10:45 the new blood was sent. 11:35 we were given the ok, PAM arrived and PAM started flowing by 12:15. I mean talk about bad luck. We finally get the infusion center and an infusion nurse, but we get horrible, ineffecient lab processes. I made sure to voice my opinions. I was so mad, I was crying. And yes, I dropped the F bomb. I mean come on, a 2 1/2 year old with an IV in her arm for 3 hours with NOTHING flowing. UNACCEPTABLE. I plan on writing a letter to the hospital, but after typing this post, I know I need to calm down a little more!! Caroline is doing great and the PAM definitely worked! I asked her how she felt on the car ride home and she she told me her back didn't hurt her anymore. Which breaks my heart that it even hurts in the first place, but so thankful that the medicine works. And after seeing how well she is doing tonight, the wait was worth it. Robert is doing 100% awesome. He is so close to walking independently. It makes me so happy, but so sad at the same time. He is getting so big! He's not even a baby anymore. He sure doesn't have baby weight! He is all boy! He talks non-stop too. Funny, because he will hear Caroline talk and he tries to out talk her. And he chases her down the hall. He absolutely loves his sister. We are so excited for his 1st birthday next month! And of course, I am super excited to plan the party! This weekend we are going to be in Washington DC for an OI Conference. We are excited to meet more families and children with OI. And we get to actually put faces with stories. It will be so nice to be with other mothers that know what I go through every day. I love my friends, they are definitely the best, but they just don't know what I go through, think about, day in and day out. So it will be so nice to talk to moms that can relate.

So that's us in a nutshell. A 3 hour infusion took 7 1/2 hours. Robert is minutes from walking. And the whole family is off to our nations capital. NEVER A DULL MOMENT! Love to all

Blogging

Yes, I know. I need to get better at this. This morning at my mom's morning, another mom mentioned that she was awaiting amnio results. And how she was praying for the best case scenario not the worst case. And as she sat there and was talking about it with us, I just sat there shaking my head agreeing with everything she was saying and thinking. I remember our horrible appointment that dreadful day. The doctor telling us that Caroline has short limbs, and she was probably going to be a dwarf, and me constantly repeating, "but I'm just here for my high blood pressure". I had no idea why in the world he told me she had short limbs and why he sat us in a room with a genetics counselor for her to tell us "worst case scenarios". As I sat there listening to this mom, I just wanted to scream for her. I wanted to tell her it would be alright. I wanted to tell her it was ok to be mad at God. I wanted to tell her it's not fair and that she did nothing to deserve this. I wanted to tell her it was ok to be mad at her friends for having healthy babies and that you it was normal to feel alone in this fight. I just sat there and shook my head because everything she said I remembered. The waiting on the amnio results, the constant praying and praying and telling people that you just wanted best case scenario. And dreading the phone ringing because you didn't know who was going to be on the other line. You wanted it to be your results, but you also didn't want it to be your results because you just didn't want to face your future. All day I have been thinking about this mom, praying for this mom, praying for her unborn child, and praying for her husband. Because bless his heart. I remember Web feeling helpless. He wanted to be there for me, and he definitely was, but I wasn't ready to lean on him. He was definitely my sounding board and my shoulder to cry on but I just wasn't ready for his optimism, positive attitude, and his constant reminder that we would love Caroline know matter what. After mom's morning I did tell this mom she could talk to me if she had any questions, and that I have been in her shoes of the unknown. And that she couldn't blame herself, yada yada. But after she left, I stood there and thought, you moron, that's exactly what she doesn't want to hear right now. She just wants to vent, she just wants to vomit her thoughts, she just wants it to all go away. So if anyone is reading this blog, I ask that you please pray for this mom. NO ONE knows what she is thinking or feeling but her. And for the genetics doctor who told us "worst case scenario". I would like to share this picture with you.

Caroline practicing for her dance recital. Love to all

One Year Later...

This weekend will be one year since the big one, the scary one, the necessary one, the "are we sure we are doing the right thing for our daughter" one. It will be one year exactly since Caroline had her 1st major surgery.
The left femur, left tibia, right tibia, right hip. 8 hours in a waiting room, pacing, crying, reading, shopping (in the gift shop), anything to pass the time. And then the wonderful Dr. E told us she did good, no blood loss, no blood transfusion. Relief. And her hip popped in place. He told us we had a long road ahead of us. 12 weeks in a spica cast, then at least a couple months in a hip brace, but he thinks she should walk. WALK?!? Seriously? WALK?!? 6 months later we rodded the right femur.
Well, one year later and she is walking, dancing, hopping, trying to drive a 3 wheeler bike! We couldn't be more proud!

Here she is walking on her very 1st Easter Egg Hunt at school!


Web and I were so proud of her and she had so much fun!
Also during this time, we were pregnant and had Robert Joseph! I swear we love him just the same. He just doesn't get as much "air time". So here he is at Easter. He was extremely happy just laying around!



We have so much to be grateful for and yes, I still hate OI every day. And I am not even close to coming to terms with it. But every day when I see our Sweet Caroline walk, run, dance, it puts a huge smile on my face!
And now she is trying to teach Robert how to walk! What an awesome sight to see. However, I don't think I am quite ready for our 8 month old to start walking. Even though he is definitely pulling up on his own and trying to walk the furniture.

Thank you all so much for your thoughts and prayers this past year. They have not gone unnoticed.
Love to all,
Kristine

CHOCOLATE!!

Yes, I know I suck at this. And it's not for lack of things to say. Trust me, every day I drive in my car and I think, "oh I should write about that". I even talk out loud by myself in the car about what I'd say, but then I get home, unload the car, the kids, put things away, etc, etc and next thing you know it's dinner, bath, books, bed, then I try to have a conversation with Web or we watch the Thunder play. Then the next day comes around, I am in my car and I think of something else to blog about! I wish there was a recorder that I could use in my car, that would transfer to this blog. Not that many people read this. But it would probably help my mental stability! In the last few weeks, Caroline is 100% walking independently, she is talking more than ever, having imaginary play time (more on that later), Robert has 3 teeth now, trying to pull up to a standing position (6 month old, ps), and eating NON STOP. I swear this kid will eat us out of the kitchen. It's so much fun to see our children thrive.
Caroline has not had any setbacks, KNOCK ON WOOD. She is doing awesome. She loves school, plays well with the other kids, out talks all her friends at school, loves our new nanny. So what could I possibly have to blog about all these days I am driving in my car? Well, I'll tell ya.

OI. I swear those 2 letters consume my brain. There is not 1 hour a day that goes by that I don't think about it. Yes, she is doing great. I've already made that clear and yes, I count my blessings. But there is so much more to it. She is the oldest kid in her class, but the shortest. Her dwarfism is really starting to play a serious role in my every day thinking. I guess it's because I see her with kids her own age and I see how small she is. It's also hard to grasp, when you have a dad that is 6'5, brother that is 6'4", husband that is 6'2". Shortness does not run in our family. And it is especially hard when she tells me she can't reach the door handle because she is not tall enough. It breaks my heart that her friends in school can reach things that she can't. We even had to see if she could get in the chairs at school that she'll be using in her next classroom. It's not easy, and it will take her awhile to adjust to them, but my strong headed daughter will do it. But it just pisses me off that she even has to deal with it. I hate OI. There is nothing about it that puts a smile on my face. Yes, I smile every time I see an achievement, like climbing onto the couch, or walking up the stairs, or climbing into her car seat, but I still hate it. I hate it that she will be a dwarf. I am pissed off about it. But, I am also pissed that I let it get to me. When am I going to come to terms with it all? When will I just say, "Ok, this is it"? Will I ever? Sometimes, I do not believe so.

But today, today she was just a 2 year old with a vivid imagination. She and daddy went to the grocery store and she came home with a princess balloon. Shocking, I know. Well she sees a balloon and immediately thinks, birthday party! So, she and I sit on the living room floor and we have an imaginary birthday party, with imaginary drinks, imaginary cake, and imaginary friends. But for some reason she gets out the gold fish and an unopened bag of chocolate chips! We are having so much fun, and it's time for nap time. I don't know about y'all but the time change was not my friend today with getting her to nap. So I accepted any bribe she would bring to the table. She asked if she could have a birthday party with her lambie and her kitty cat. OF COURSE!! So she takes her milk and the unopened bag of chocolate, and her princess balloon. Well, of course, I tell her the balloon cannot go to bed with her, because the string could hurt her while she is sleeping. And she was fine with that, but HAD TO have the chocolate. Well fine, what harm is that? Plus, I would come back to her room in about 20 minutes once she is sound asleep and get the chocolate out of her crib. Oye veh!

Well, guess who forgot to go back and check on her?! Yep, she managed to open up the bag of chocolate, eat some, get it all in her hair, body, floor, lambie, kitty cat, you name it.





(Aren't you proud I figured out the pictures) I immediately yelled for Web to bring the camera. I was in heaven! My daughter who we have been told from day one would have limitations, boundaries, etc was being a 2 year old! I was teary eyed when I bathed her. (shocking, I know) When she got out of the tub, I hugged her and told her how proud I was of her. HA! I wanted to shout out loud, "LOOK!! My daughter made a mess! My daughter is just like yours!"

Now onto our other child. Poor kid. I promise, we love him just the same!
He is crazy and so ready to be mobile. I wouldn't be surprised if he's not walking by June. The kid is so close to standing on his own. My mom told me that I skipped crawling and went straight to walking, I can totally see him doing that. Here is probably one of the cutest pics of any 6 month old you'll ever see!



And yes, we have sibling love all the time! Caroline tells Robert every day that she loves him. It's pretty cute.


Well that's us in a nutshell. LOL! Probably way more than you ever planned on reading, huh? Hopefully my next blog won't be 6 weeks later!!
Love to all!

Lessons of an OI Child

What I learned today. I figure this year is going to be a year of lessons with a 2 year old who wants to be a 2 year old and a mom of a 2 year old with OI. This morning we went to our 1st play date with one of my dear friends from Tulsa who recently moved here. She is in a play group and invited me to join them at this fun place in Edmond where you can paint, play with playdoh, stamp art, pretty much anything creative. Of course, in the room next door was any toddlers dream of a huge playset, sandbox, slides, pirate ship, everything that they would want to play with, but everything a mom of an OI child dreads.

Caroline had her walker but she is also walking independently a lot, so there is not one second I can turn my head. Caroline wanted to do everything that the other kids are doing. So imagine me, holding our sweet Robert who wants to be with his mom 100% of the time, and Caroline climbing stairs trying to be just like the big kids. I was so proud of her, but literally held my breath as every kid came up to her. They wanted to know why she had a walker, why she walked funny, why she needed my help to go up the stairs. Questions that I would expect from children. Questions that I could answer. She uses a walker to help her walk, she walks a little funny because she is learning how to walk, and she needs my help because I don't want her to fall and get an owie. Kids get it, moved on. Kids just don't care at this age, they just move on. Thank goodness.

Then there are some parents. "Brittle bone disease? What does that mean"? Me: "Her bones are brittle, they can break easily". /BLANK STARE/
I also see the moms that are staring at Caroline and I, walking hand in hand, and whispering about how she is walking. Probably saying to themselves, "thank God that's not my child" or "That poor mom she has her hands full" And to those moms I say, "SCREW YOU". At least my child isn't throwing sand at some sweet innocent child! At least my child is not hitting someone! At least my child says, thank you and no thank you! (These were not the play date moms, ps!)

For the love of Gosh. I know this is something that I will always have to deal with, and I promise I will try to get better with it. But unfortunately, I can have a major sarcastic attitude sometimes and I am worried about what I could say to a mom one day when I am at my breaking point! Hopefully, I will have one of my friends with me that can pull me back.

I absolutely cannot wait to take Caroline on her next play date. I know she will have a blast and I know that I will not take that opportunity from her. I will try to take her to everything I can. She deserves to be just like every other 2 year old out there. And I promise I will work on my sarcasm!

On another note, my 5 month old is teething! How is this possible? How did he grow up so quickly? He is also getting on all 4's and crawling backwards! CALGOOOOONNNNNN!!!!!!!

Love to all!