Well first of all I should just apologize now. If I have learned anything this year, it's that I suck at updating this blog! These kids of ours, keep me extremely busy! I have mixed feelings about this year. On one side, it was awesome! Robert was born and Caroline started taking steps on her own! Super exciting and we are extremely blessed.
On the other side, I hated 2011. HATED IT! Our daughter endured way more than most 2 year olds. We started out 2011 with a brand new break, 3 hospital stays, 11 weeks in a body cast, endless weeks in a hip brace, a medical walker, and 4 trips to Omaha. OI kicked us in the ass. BUT, she is walking and that is something we just didn't know if it would or could happen. So it's a double edge sword. 2011 sucked, but it was also a great year!
I am looking forward to a much quieter, break free 2012. Web and I have learned that we have so much to be grateful for. We both have our health, we have a roof over our heads, we have 2 healthy and energetic kids, and we have faith that we can endure whatever is handed to us.
I'm going to keep this short and sweet but we wanted to say thank you. Thank you for the prayers, thank you for thinking of our Sweet Caroline when she was having a tough time. Thank you for all the well wishes on Robert.
Happy New Year! I hope this year brings you many blessings!
Love to all!
Saturday, December 31, 2011
Sunday, November 6, 2011
And we're back
Well we have been on a whirlwind of a month but we are back from 2 trips to Omaha. I am mentally drained, physically exhausted and down right tired of OI. But Caroline has proven to us once again that she is the bravest girl we will ever know.
Her surgery was a huge success. 13 days after surgery her splint came off and 15 days after surgery she attempted walking with her new walker. She definitely needs to practice on the walker some more, but considering where we were a few weeks ago, no complaints here! And we are so proud of her!
Caroline and I also went back to Omaha for clinic. All the doctors were extremely pleased with how well she has been doing! She is gaining weight and height. All 4 long bones in her legs are rodded, PAM will be continued, we need to do more physical therapy and hopefully we won't be back to Omaha for another year.
5 trips to Omaha in 1 year is 4 too many!
I know I am missing a lot of info, but I am just so tired of talking about OI and Caroline's latest breaks.
She had a great birthday. And both Caroline and Robert were the cutest at Halloween.
Caroline was a lambie and Robert was a pumpkin. Web and I count our blessings every day.
We want to thank you all for your continuing prayers and positive thoughts!
Love to all!
Her surgery was a huge success. 13 days after surgery her splint came off and 15 days after surgery she attempted walking with her new walker. She definitely needs to practice on the walker some more, but considering where we were a few weeks ago, no complaints here! And we are so proud of her!
Caroline and I also went back to Omaha for clinic. All the doctors were extremely pleased with how well she has been doing! She is gaining weight and height. All 4 long bones in her legs are rodded, PAM will be continued, we need to do more physical therapy and hopefully we won't be back to Omaha for another year.
5 trips to Omaha in 1 year is 4 too many!
I know I am missing a lot of info, but I am just so tired of talking about OI and Caroline's latest breaks.
She had a great birthday. And both Caroline and Robert were the cutest at Halloween.
Caroline was a lambie and Robert was a pumpkin. Web and I count our blessings every day.
We want to thank you all for your continuing prayers and positive thoughts!
Love to all!
Wednesday, October 19, 2011
Change of plans
Just when you think you have your life somewhat, somehow calm, BAM, something happens. I know this is true with everyone And boy did we ever get a tough lesson this week. I was so proud of our little family. Robert was sleeping better, Caroline was walking with assistance and just a few weeks from being rodded, I was back on my diet, Web was feeling well and things were just smooth sailing. Then 3 days ago that all came to a screeching halt.
Every Monday morning, I go to my mom's morning group at the church. I thoroughly enjoy going, and try to make it every Monday no matter what. Over the weekend Caroline had a runny nose and I just hoped that she would be ok by Monday so we wouldn't miss it. Caroline goes into a room with children younger than her. I don't quite feel comfortable with her being in the class of her age group because those children are walking, running and doing what they should be doing and I didn't want to put Caroline in harms way, or put the ladies of the church in a bad situation of not being able to give Caroline the attention she would need. And let's face it, Caroline didn't know the difference at all.
This Monday morning was really no different than the others. My dad came to town Sunday and spent the night and he helped me with the kids in the morning. Caroline's nose was clear all was good in my universe! Even my dad and Caroline were practicing walking in the hall, which is something that we have been doing daily. We even had plans to pick up Caroline's new medical walker on Tuesday. Again, ALL WAS WELL IN OUR WORLD.
BAM! One of the nursery workers at the church came to the basement where I was in my small group and said, "Caroline fell and she is crying for you". Well this didn't cause huge alarm to me because she falls and goes boom and usually gets up, or wants mommy to kiss it. So I thought I would be going upstairs, kissing her owie and get back to my group. As soon as I walked in the door I knew that was not the case. She had "that cry". The one where I know something is hurting her more than the daily owie. I lay her down on the ground and immediately feel the heat on her leg and see the swelling. The ladies in the nursery are telling me she was just standing there, lost her balance, fell on her leg and just started crying. Of course, I do not blame these ladies at all. They could have been standing right next to her and it still would have happened. So, I pick her up, run down the stairs, put her in the stroller and realize Robert is missing! Not missing like you would think, our lovely mom's morning leader was taking care of Robert so I could participate in my small group without having to burp, feed, rock or whatever Robert needs. I thoroughly enjoy her help! I wish you could have seen the eyes of the moms in my small group. They were worried, sad, frazzled, trying to figure out what they could do to help me. And all I could say was, "find Robert".
These moms were rock stars. They helped me in ways they will probably never know and in ways that I could never repay. One mom gave me Ibuprofen for Caroline because for some reason I didn't have any in my diaper bag. A couple other moms were taking Caroline in the stroller outside to my car, and others were walking around the church trying to find Robert. I am sure we were quite the sight! And sadly, this whole time, Caroline is screaming and crying. Nothing any mom ever wants to hear.
So long story short, I call Web and tell him to meet me at the ER. I am sure he could hear Caroline in the background and know mama was not joking. This day will seriously go down in the record books. Not only did I speed the whole way to the hospital, but once we got settled, we called Web's sister, and had her pick up Robert from the hospital. He is only 9 weeks old and I didn't want him anywhere near the hospital germs. Never have Caroline or Robert been in a car with any other driver besides me or Web. So you know Caroline must have been bad, if I just let Robert go with Aunt Cori. Not that I don't trust her, but I have just never done it. We told her 2 scoops of formula per 4 oz of water, every 2 hours and we would be home as soon as we could. Bye bye.
5 long hours later in the ER, Caroline is medicated and splinted by the ortho resident because our ortho is in surgery. But he did see the x-rays in his surgery and advised the resident what needed to be done. After Web and I see the x-rays we immediately know to call Dr. E in Omaha and see if we can come earlier for rodding surgery because her leg is severely fractured. It's practically in 2 pieces. Before she is even splinted, we hear back from Omaha and Caroline has a surgery date of this Friday at 4pm. Record book. I mean seriously?? How do you even get something so quickly scheduled with one of the busiest orthos around? Well, you break your leg in half. Sad, but true.
There is so much more to this story, I will try to sum it all up in one sentence.
Caroline gets home, miserable, can't sleep, can't eat, wakes up miserable, can't eat, vomits, can't get comfortable, vomits, mom loses it, mom calls dad to make it better, dad calls ortho, ortho asks us to come in, ortho sees splint, ortho re-does splint, Caroline is comfortable, takes 4 hour nap, small bites of food, sleeps through the night, eats 3 meals today.
Longest, run on sentence EVER! But you get it. Our Sweet Caroline was miserable, and that made mommy miserable.
We leave tomorrow for Omaha with Robert and Mother in law in tow. I couldn't' bear to leave Robert. I felt like a bad mom as it was Monday being away from him for 5 hours then not being able to give him any attention when we got home. We are so lucky that Karen is able to join us to relieve us at the hospital and to stay with Robert at the hotel while Caroline is having surgery.
I feel like I have left out so much information. Well I know I have. I have so much going on in my head right now.
I want to scream every 4 letter word out there. I want to take away my daughters pain. I want to tell all my friends how lucky they are that they don't have a child with OI. I want to hug a mom whose child has OI, but I can't here. I want people to just feel what I am feeling for one minute so they know the pain I am in every time I have to lift my daughter and she cries out, just so they understand why I am not in a good mood. I just want to start last Monday over and wish Caroline had a runny nose and that we had to miss mom's morning. I want to not be rushing around trying to figure out what in the hell to pack for an Omaha trip that I am not mentally or physically ready for. I mean I was going in 2 weeks, I still had time to plan. I want to still be debating on what cupcakes to order for her school birthday party and her family birthday party. The thought that she will spend her 2nd birthday in a splint pisses me off. I mean she was broken on her 1st birthday WHY her 2nd!?! This will be her 3rd Halloween with a break. WHY?!?! I am not ready for this at all, but I know I can do it. I mean I don't even have the hard part of all this, Caroline does. Caroline is the one being put under, cut open, rodded, closed up, and splinted. Caroline is the one that can't take the bubble bath that she has asked me to give her, Caroline is the one that can't go to the park and swing and go down the slides like we do all the time. Caroline is the one that is suffering way more than me.
After reading all this, I hope you will pray for Caroline's surgery, for her doctors, for our travel and most of all for her patience (and mine). Telling a 2 year old no to all the things she loves is probably going to be the worst part of all of this.
Thank you for reading my venting! My next post will be positive. It will be of good news that Caroline's surgery was a success!
Love to all
Every Monday morning, I go to my mom's morning group at the church. I thoroughly enjoy going, and try to make it every Monday no matter what. Over the weekend Caroline had a runny nose and I just hoped that she would be ok by Monday so we wouldn't miss it. Caroline goes into a room with children younger than her. I don't quite feel comfortable with her being in the class of her age group because those children are walking, running and doing what they should be doing and I didn't want to put Caroline in harms way, or put the ladies of the church in a bad situation of not being able to give Caroline the attention she would need. And let's face it, Caroline didn't know the difference at all.
This Monday morning was really no different than the others. My dad came to town Sunday and spent the night and he helped me with the kids in the morning. Caroline's nose was clear all was good in my universe! Even my dad and Caroline were practicing walking in the hall, which is something that we have been doing daily. We even had plans to pick up Caroline's new medical walker on Tuesday. Again, ALL WAS WELL IN OUR WORLD.
BAM! One of the nursery workers at the church came to the basement where I was in my small group and said, "Caroline fell and she is crying for you". Well this didn't cause huge alarm to me because she falls and goes boom and usually gets up, or wants mommy to kiss it. So I thought I would be going upstairs, kissing her owie and get back to my group. As soon as I walked in the door I knew that was not the case. She had "that cry". The one where I know something is hurting her more than the daily owie. I lay her down on the ground and immediately feel the heat on her leg and see the swelling. The ladies in the nursery are telling me she was just standing there, lost her balance, fell on her leg and just started crying. Of course, I do not blame these ladies at all. They could have been standing right next to her and it still would have happened. So, I pick her up, run down the stairs, put her in the stroller and realize Robert is missing! Not missing like you would think, our lovely mom's morning leader was taking care of Robert so I could participate in my small group without having to burp, feed, rock or whatever Robert needs. I thoroughly enjoy her help! I wish you could have seen the eyes of the moms in my small group. They were worried, sad, frazzled, trying to figure out what they could do to help me. And all I could say was, "find Robert".
These moms were rock stars. They helped me in ways they will probably never know and in ways that I could never repay. One mom gave me Ibuprofen for Caroline because for some reason I didn't have any in my diaper bag. A couple other moms were taking Caroline in the stroller outside to my car, and others were walking around the church trying to find Robert. I am sure we were quite the sight! And sadly, this whole time, Caroline is screaming and crying. Nothing any mom ever wants to hear.
So long story short, I call Web and tell him to meet me at the ER. I am sure he could hear Caroline in the background and know mama was not joking. This day will seriously go down in the record books. Not only did I speed the whole way to the hospital, but once we got settled, we called Web's sister, and had her pick up Robert from the hospital. He is only 9 weeks old and I didn't want him anywhere near the hospital germs. Never have Caroline or Robert been in a car with any other driver besides me or Web. So you know Caroline must have been bad, if I just let Robert go with Aunt Cori. Not that I don't trust her, but I have just never done it. We told her 2 scoops of formula per 4 oz of water, every 2 hours and we would be home as soon as we could. Bye bye.
5 long hours later in the ER, Caroline is medicated and splinted by the ortho resident because our ortho is in surgery. But he did see the x-rays in his surgery and advised the resident what needed to be done. After Web and I see the x-rays we immediately know to call Dr. E in Omaha and see if we can come earlier for rodding surgery because her leg is severely fractured. It's practically in 2 pieces. Before she is even splinted, we hear back from Omaha and Caroline has a surgery date of this Friday at 4pm. Record book. I mean seriously?? How do you even get something so quickly scheduled with one of the busiest orthos around? Well, you break your leg in half. Sad, but true.
There is so much more to this story, I will try to sum it all up in one sentence.
Caroline gets home, miserable, can't sleep, can't eat, wakes up miserable, can't eat, vomits, can't get comfortable, vomits, mom loses it, mom calls dad to make it better, dad calls ortho, ortho asks us to come in, ortho sees splint, ortho re-does splint, Caroline is comfortable, takes 4 hour nap, small bites of food, sleeps through the night, eats 3 meals today.
Longest, run on sentence EVER! But you get it. Our Sweet Caroline was miserable, and that made mommy miserable.
We leave tomorrow for Omaha with Robert and Mother in law in tow. I couldn't' bear to leave Robert. I felt like a bad mom as it was Monday being away from him for 5 hours then not being able to give him any attention when we got home. We are so lucky that Karen is able to join us to relieve us at the hospital and to stay with Robert at the hotel while Caroline is having surgery.
I feel like I have left out so much information. Well I know I have. I have so much going on in my head right now.
I want to scream every 4 letter word out there. I want to take away my daughters pain. I want to tell all my friends how lucky they are that they don't have a child with OI. I want to hug a mom whose child has OI, but I can't here. I want people to just feel what I am feeling for one minute so they know the pain I am in every time I have to lift my daughter and she cries out, just so they understand why I am not in a good mood. I just want to start last Monday over and wish Caroline had a runny nose and that we had to miss mom's morning. I want to not be rushing around trying to figure out what in the hell to pack for an Omaha trip that I am not mentally or physically ready for. I mean I was going in 2 weeks, I still had time to plan. I want to still be debating on what cupcakes to order for her school birthday party and her family birthday party. The thought that she will spend her 2nd birthday in a splint pisses me off. I mean she was broken on her 1st birthday WHY her 2nd!?! This will be her 3rd Halloween with a break. WHY?!?! I am not ready for this at all, but I know I can do it. I mean I don't even have the hard part of all this, Caroline does. Caroline is the one being put under, cut open, rodded, closed up, and splinted. Caroline is the one that can't take the bubble bath that she has asked me to give her, Caroline is the one that can't go to the park and swing and go down the slides like we do all the time. Caroline is the one that is suffering way more than me.
After reading all this, I hope you will pray for Caroline's surgery, for her doctors, for our travel and most of all for her patience (and mine). Telling a 2 year old no to all the things she loves is probably going to be the worst part of all of this.
Thank you for reading my venting! My next post will be positive. It will be of good news that Caroline's surgery was a success!
Love to all
Tuesday, October 4, 2011
Waterproof mascara
The other day I treated myself to some new makeup. It wasn't necessarily anything I needed but I felt like I needed a little something different. I bought the usual, but they must have seen my exhaustion and they put eye lifting cream on me plus some new eye shadow. Of course, I fell for it, bought it, and came home with a gift with purchase! All in all, it was a good day!
As I was going thru my gift with purchase I noticed a mascara was in it. I was super close to throwing it out, but figured why not keep it. Then I thought long and hard on when was the last time I bought mascara that wasn't waterproof?
And I can tell you it was March 2009. How do I know that? Because that was when I found out I was going to be a pregnant bride. No, we didn't get pregnant, then decide to get married. (NOT THAT THERE IS ANYTHING WRONG WITH THAT!!!) But 2 months to the day we were going to walk down the aisle I found out we were pregnant with Caroline. Needless to say, I was an emotional basket case. And let's face it, in these past 2 1/2 years we have definitely had some heart ache, joys, scares, pretty much any emotion you can dream of, we have had it.
I have cried at our wedding, tears of joy, cried when we saw Caroline on the ultrasound machine, more tears of joy. And bawled when we found out at 32 weeks, there would be something different with Caroline. Tears of joy again, when she was born, and scared tears when we heard the words, Osteogenesis Imperfecta. Tears of sorrow, when she had her 1st break, plus tears of happiness because that day was also my 1st mothers day. Tears of being petrified when our Sweet Caroline was being wheeled back to surgery, tears of relief when they told us she was in recovery and the surgery was a total success. Tears of more excitement when we found out we were pregnant with #2! Tears of anticipation as we went to high risk appointments and waiting on the doctors to tell us #2 was going to be ok. Tears of joy when we found out it was a BOY! Tears of nervousness when we went in for delivery and knew 100% that Robert Joseph didn't have OI, or any form of skeletal dysplasia. And just recently tears of pride as we watched our daughter walk when we were told it may never happen.
It wasn't until last week, that I actually put away my waterproof mascara and put on my gift with purchase free mascara. You see the last 2 1/2 years have been many tears, both good and bad. But I finally feel like it is ok.
Why did I write about this now? Well, our Sweet Caroline will be 2 at the end of this month and when I think of all the things that she has gone thru in 2 short years I have a wave of emotions rush over me. I couldn't be more proud of the bravest girl in my world. Of course, I will probably bring out the waterproof mascara that day! And a couple days later, we will board a plane for her next surgery. And she will be my brave girl once again. And I will pull out my my waterproof mascara once again. But I will definitely bring out the freebie mascara as soon as we are home.
Love to all
As I was going thru my gift with purchase I noticed a mascara was in it. I was super close to throwing it out, but figured why not keep it. Then I thought long and hard on when was the last time I bought mascara that wasn't waterproof?
And I can tell you it was March 2009. How do I know that? Because that was when I found out I was going to be a pregnant bride. No, we didn't get pregnant, then decide to get married. (NOT THAT THERE IS ANYTHING WRONG WITH THAT!!!) But 2 months to the day we were going to walk down the aisle I found out we were pregnant with Caroline. Needless to say, I was an emotional basket case. And let's face it, in these past 2 1/2 years we have definitely had some heart ache, joys, scares, pretty much any emotion you can dream of, we have had it.
I have cried at our wedding, tears of joy, cried when we saw Caroline on the ultrasound machine, more tears of joy. And bawled when we found out at 32 weeks, there would be something different with Caroline. Tears of joy again, when she was born, and scared tears when we heard the words, Osteogenesis Imperfecta. Tears of sorrow, when she had her 1st break, plus tears of happiness because that day was also my 1st mothers day. Tears of being petrified when our Sweet Caroline was being wheeled back to surgery, tears of relief when they told us she was in recovery and the surgery was a total success. Tears of more excitement when we found out we were pregnant with #2! Tears of anticipation as we went to high risk appointments and waiting on the doctors to tell us #2 was going to be ok. Tears of joy when we found out it was a BOY! Tears of nervousness when we went in for delivery and knew 100% that Robert Joseph didn't have OI, or any form of skeletal dysplasia. And just recently tears of pride as we watched our daughter walk when we were told it may never happen.
It wasn't until last week, that I actually put away my waterproof mascara and put on my gift with purchase free mascara. You see the last 2 1/2 years have been many tears, both good and bad. But I finally feel like it is ok.
Why did I write about this now? Well, our Sweet Caroline will be 2 at the end of this month and when I think of all the things that she has gone thru in 2 short years I have a wave of emotions rush over me. I couldn't be more proud of the bravest girl in my world. Of course, I will probably bring out the waterproof mascara that day! And a couple days later, we will board a plane for her next surgery. And she will be my brave girl once again. And I will pull out my my waterproof mascara once again. But I will definitely bring out the freebie mascara as soon as we are home.
Love to all
Monday, September 19, 2011
He's still around!
First off let me just tell you that I am probably going to be typing this blog in hours, if not days.
As of right now, Caroline is about to wake up from her nap, Robert is just about ready to nurse, the air conditioning people should be here any minute, and Web should be home with Kelsey soon! So, needless to say, I just don't know when I will finish this blog.
But, there isn't much to say. We went to see Dr. Herndon last week and Caroline's hip brace is off full time! She wears it outside when she plays at school and when she sleeps. She was fitted for a walking brace which should be here in the next couple weeks. The walking brace makes me laugh, because don't kid yourself, Caroline took it upon herself to start walking! She had a push toy, stood up and walked! It was very exciting! I might have cried pretty much that whole day! Our PT also has her medical walker on order, so yeah! It's funny though. Web and I were so excited about her walking that we went out and bought her 3 new push toys! So, if you come to our house, be careful of where you are walking. Chances are you will trip over a new walking toy. I also was super excited that she can stand without her brace that I went out and bought her a kitchen! HA! So much for waiting until her 2nd birthday! Caroline had a mini birthday this past weekend. I now understand why parents buy toys at garage sales. I never understood it, but it totally makes sense now. I kept telling myself that we still have another child at home that can play with them as well! And let's face it. Our daughter is WALKING. I remember being told she might not walk. And here she is walking without her walking brace and medical walker. HA!
We go to Omaha in a few weeks and I can't wait for Caroline to walk to Dr. E. I am sure I will cry yet again.
Caroline walking happened on a big day! Robert's one month birthday. It was quite the celebratory house. Robert is doing great!
Gaining weight. He better be. He is nursing about every 2 hours! Whoever said nursing is a great bonding time with your child never met me. Sadly the whole time I keep thinking of other things I could be doing! So sad. I am hopeful that once he starts eating every 3 hours life around our house might be a little quieter and calmer? I am sure that is wishful thinking!
But, we are so blessed and so thankful for our family!
Love to all!
As of right now, Caroline is about to wake up from her nap, Robert is just about ready to nurse, the air conditioning people should be here any minute, and Web should be home with Kelsey soon! So, needless to say, I just don't know when I will finish this blog.
But, there isn't much to say. We went to see Dr. Herndon last week and Caroline's hip brace is off full time! She wears it outside when she plays at school and when she sleeps. She was fitted for a walking brace which should be here in the next couple weeks. The walking brace makes me laugh, because don't kid yourself, Caroline took it upon herself to start walking! She had a push toy, stood up and walked! It was very exciting! I might have cried pretty much that whole day! Our PT also has her medical walker on order, so yeah! It's funny though. Web and I were so excited about her walking that we went out and bought her 3 new push toys! So, if you come to our house, be careful of where you are walking. Chances are you will trip over a new walking toy. I also was super excited that she can stand without her brace that I went out and bought her a kitchen! HA! So much for waiting until her 2nd birthday! Caroline had a mini birthday this past weekend. I now understand why parents buy toys at garage sales. I never understood it, but it totally makes sense now. I kept telling myself that we still have another child at home that can play with them as well! And let's face it. Our daughter is WALKING. I remember being told she might not walk. And here she is walking without her walking brace and medical walker. HA!
We go to Omaha in a few weeks and I can't wait for Caroline to walk to Dr. E. I am sure I will cry yet again.
Caroline walking happened on a big day! Robert's one month birthday. It was quite the celebratory house. Robert is doing great!
Gaining weight. He better be. He is nursing about every 2 hours! Whoever said nursing is a great bonding time with your child never met me. Sadly the whole time I keep thinking of other things I could be doing! So sad. I am hopeful that once he starts eating every 3 hours life around our house might be a little quieter and calmer? I am sure that is wishful thinking!
But, we are so blessed and so thankful for our family!
Love to all!
Friday, September 9, 2011
Sleep Deprived!
I really don't even know where to start. My brain is mush. It is absolutely, 100% true that you forget what it's like being pregnant. I mean if you remember all the grossness of being pregnant, I'm pretty sure a lot of families would only have one child. And you also forget about the newborn stage! I absolutely, positively do not remember Caroline as a newborn. It was such a blur. Probably because at 5 days old we found out about her OI. We had a nurse come to our house to show us how to care for our child, I couldn't nurse because she had a broken arm and clavicle. And to top it off, I cried a lot! I was an absolute mess!!
So now here we are with a non-OI newborn and I feel like we are brand new parents again. It seems that every thing is different. Let me just tell you, Robert is an eater. This kid can seriously consume some milk. He is eating every 2 hours for approximately 45 minutes each time. That gives me about one hour and 15 minutes in the day to do something either with Caroline, switch out laundry, run to the bank, or here's a thought BRUSH MY TEETH AND FACE! And don't even get me started on my lack of showers these days. There is NO WAY I would have done this twice if my Sweet Caroline had been like this, right? WRONG. Web looked in her baby book and sure enough in my hand writing it says that Caroline eats all the time and wants to be held all the time. WHAT?! I do not remember that at all! How is that even remotely possible? How could I do this to myself? Sleepless nights? Dirty hair and clothes? Well, I did. So I guess that means the grass is greener on the other side, or whatever that saying is, because I wouldn't trade Caroline for anything. But man, what I wouldn't do to get a good nights sleep.
But enough of me complaining. We have a lot to be thankful for right now. We have 2 very healthy, growing children. Caroline is standing as much as she can with a brace on her legs. When we take her brace off, out of water, she can kind of take a couple steps! And I am getting closer to being able to work out again! HOORAY! I can hardly wait to get on the elliptical with my workout music and just zone out. Of course, that means I will for sure have to find time to take a shower and well that will be interesting!
If you think about it we would love some prayers our way right about now. On Tuesday, we take Caroline to the OKC ortho dr and by the grace of GOD and all that's right in the world, he better take off this brace. If it doesn't come off, I am scared of what I might do to the poor man. I am so over this brace. Taking it on and off every time we have to change a diaper. I am so over it! I want to be able to see Caroline walk with or without a walker. I want her to be able to stand beside the car when I need to load her brother in the car seat. It is quite the challenge right now with 2 kids that need to be held getting in and out of the car. Just her standing next to me would be a huge help! But gosh, she is so cute. She is using her words like crazy. Loves her new outdoor play house and slide. She is outgrowing her toys, because toys her age are pushing toys and I am so ready for her to PUSH and stand! Can I say that enough? So, like I said, PRAY that Dr. Herndon takes this brace off and puts on the walking brace. Otherwise, I would hate to be him next Tuesday! I might go crazy on him!
FYI, this post has been typed in 2 parts. I started yesterday and finishing today. Hungry Robert called!
Love to all!
Us
So now here we are with a non-OI newborn and I feel like we are brand new parents again. It seems that every thing is different. Let me just tell you, Robert is an eater. This kid can seriously consume some milk. He is eating every 2 hours for approximately 45 minutes each time. That gives me about one hour and 15 minutes in the day to do something either with Caroline, switch out laundry, run to the bank, or here's a thought BRUSH MY TEETH AND FACE! And don't even get me started on my lack of showers these days. There is NO WAY I would have done this twice if my Sweet Caroline had been like this, right? WRONG. Web looked in her baby book and sure enough in my hand writing it says that Caroline eats all the time and wants to be held all the time. WHAT?! I do not remember that at all! How is that even remotely possible? How could I do this to myself? Sleepless nights? Dirty hair and clothes? Well, I did. So I guess that means the grass is greener on the other side, or whatever that saying is, because I wouldn't trade Caroline for anything. But man, what I wouldn't do to get a good nights sleep.
But enough of me complaining. We have a lot to be thankful for right now. We have 2 very healthy, growing children. Caroline is standing as much as she can with a brace on her legs. When we take her brace off, out of water, she can kind of take a couple steps! And I am getting closer to being able to work out again! HOORAY! I can hardly wait to get on the elliptical with my workout music and just zone out. Of course, that means I will for sure have to find time to take a shower and well that will be interesting!
If you think about it we would love some prayers our way right about now. On Tuesday, we take Caroline to the OKC ortho dr and by the grace of GOD and all that's right in the world, he better take off this brace. If it doesn't come off, I am scared of what I might do to the poor man. I am so over this brace. Taking it on and off every time we have to change a diaper. I am so over it! I want to be able to see Caroline walk with or without a walker. I want her to be able to stand beside the car when I need to load her brother in the car seat. It is quite the challenge right now with 2 kids that need to be held getting in and out of the car. Just her standing next to me would be a huge help! But gosh, she is so cute. She is using her words like crazy. Loves her new outdoor play house and slide. She is outgrowing her toys, because toys her age are pushing toys and I am so ready for her to PUSH and stand! Can I say that enough? So, like I said, PRAY that Dr. Herndon takes this brace off and puts on the walking brace. Otherwise, I would hate to be him next Tuesday! I might go crazy on him!
FYI, this post has been typed in 2 parts. I started yesterday and finishing today. Hungry Robert called!
Love to all!
Us
Saturday, August 27, 2011
Walking!
My last post barely mentioned Caroline's latest achievements. I am learning that being a mother of 2 is a little more difficult than I thought it would be. I don't feel like I get to spend nearly as much time with Caroline as she deserves. And she is so much fun right now! It's like in the last 2 weeks she's come even more out of her shell and she is more talkative, more directive, more creative. It's like she is officially past the baby stage and now she is a little girl. It's so fun and exciting, but sad too. I love it when she says, "mommy pick me up". Because at least I know she still needs me a little bit! It's definitely better than hearing, "no no no!" all the time!
So I will tell Caroline's latest story, even though I wasn't there because I missed it. Probably changing a diaper, or something!
The other day, Web and Caroline were swimming in the pool. All of a sudden, Web says, "watch this"! Caroline was WALKING in the pool. HELLO! We have waited over 21 months for this and she does it while I am changing her brothers diaper?!?! I was so proud and so sad at the same time. I sat on the side of the pool, she walked over to me and I just cried. I couldn't even believe it! Our little girl, who we were told might not ever walk, they just didn't know, was walking. Yes, it was in water, but can you imagine what she will do once her brace is off? So now she is being super brave. She can stand with her brace on. And she can stand with her brace off! She is so close to walking out of the pool. It's both scary and exciting at the same time!
I can't wait to see what she will do in the next few weeks!
Robert Joseph is doing well. It's crazy how you forget what having a newborn is like. But more on that another time.
We are having fun being a family of 4!
Love to all!
So I will tell Caroline's latest story, even though I wasn't there because I missed it. Probably changing a diaper, or something!
The other day, Web and Caroline were swimming in the pool. All of a sudden, Web says, "watch this"! Caroline was WALKING in the pool. HELLO! We have waited over 21 months for this and she does it while I am changing her brothers diaper?!?! I was so proud and so sad at the same time. I sat on the side of the pool, she walked over to me and I just cried. I couldn't even believe it! Our little girl, who we were told might not ever walk, they just didn't know, was walking. Yes, it was in water, but can you imagine what she will do once her brace is off? So now she is being super brave. She can stand with her brace on. And she can stand with her brace off! She is so close to walking out of the pool. It's both scary and exciting at the same time!
I can't wait to see what she will do in the next few weeks!
Robert Joseph is doing well. It's crazy how you forget what having a newborn is like. But more on that another time.
We are having fun being a family of 4!
Love to all!
Sunday, August 21, 2011
And then there were 4....
Robert Joseph Browne was born on August 15th at 7:48 am. He weighed 7 lb 11 oz and was 20 1/2 inches long. He has dark brown hair and blue eyes that I hope will not change. We thought for sure we would have another red head, but it looks like the Partridge gene took over on Robert! I will spare you the details on my c-section but let's just say it's making me think twice if we want baby #3. And recovery is taking much longer than I had hoped so we'll see! Try not to ask me for at least another year!
My plan was to blog while I was in the hospital. And I definitely could have, I had down time but instead I just enjoyed catching up on some television. It's amazing how much different it is having baby #2. Yes, all the grandparents, family and friends come to visit. But there is Caroline who is being shuttled between home, PAM infusions, hospital visits, then back home. So Web barely got to spend any time with Robert Joseph at the hospital and I didn't get to spend any time with Caroline. Web would leave the hospital by 7:30/8:00 to put Caroline down and Robert and I would just be hanging out in our hospital room bored. I was definitely glad to be back home!
Sadly our trip home was interrupted by a call from the clinic where Caroline was getting her last PAM infusion. We were literally loading up the car and the clinic called to tell us that Caroline's IV had blown had she had been crying and they didn't think they should continue with her treatment. Apparently they had tried to stick her an additional 6 times with an IV! She was with her nana but for some reason the nurses didn't think to call us to ask us what to do because they knew Web was picking me and Robert up from the hospital. Needless, to say we told them to stop and we were immediately on our way to get Caroline instead of going home. Caroline was calm by the time we got there, but apparently she had been crying for 2 hours. There are no words to describe how I felt. It was borderline abuse and Web nor I wasn't there to console her. It was all I could do to not go postal on someone. We packed her stuff up and immediately left. Web told the nurse how we felt and we received a phone call from the boss woman that afternoon. She then proceeds to tell Web it wasn't 6 IV sticks it was 4. Um ok, well now we not only think you suck but we now have no trust in you because you have changed your story. The dr. called us the next day and we told him that we would be in Omaha in November and we would give her PAM at that time, and maybe in February we will be back at his clinic. Sadly, we have been told he is the only dr. in OK that gives PAM. I am going to research it a little more. I am hopeful that since Caroline is turning 2 we can decrease the months of how often to take it. So instead of every 3 months, do it every 4. If that's the case, then Caroline and I will be going to Omaha every 4 months. Shame on us for trying to do a lot in one week, but shame on the clinic for not calling us.
BUT, we are all home now. Definitely not the homecoming we planned. Poor Robert, didn't get any pictures of coming home. He is being such a good baby. Sleeping and eating extremely well. KNOCK ON WOOD. Caroline is a great big sister! She loves her Baby Bubba Robert! I am definitely feeling torn on playing with her vs. feeding him, changing him, etc. But hoping once I can do more post surgery, she and I can have some fun! Like SWIM! Caroline is actually walking and jumping in the pool! She is having such a good time and I can't do it with her. It's definitely one of my low points of being a mommy. But in just 5 short weeks I should be back to normal. Whatever that is!
Thank you all for the wonderful well wishes! We truly are a very blessed family.
Love to all!
The Browne Family of 4
My plan was to blog while I was in the hospital. And I definitely could have, I had down time but instead I just enjoyed catching up on some television. It's amazing how much different it is having baby #2. Yes, all the grandparents, family and friends come to visit. But there is Caroline who is being shuttled between home, PAM infusions, hospital visits, then back home. So Web barely got to spend any time with Robert Joseph at the hospital and I didn't get to spend any time with Caroline. Web would leave the hospital by 7:30/8:00 to put Caroline down and Robert and I would just be hanging out in our hospital room bored. I was definitely glad to be back home!
Sadly our trip home was interrupted by a call from the clinic where Caroline was getting her last PAM infusion. We were literally loading up the car and the clinic called to tell us that Caroline's IV had blown had she had been crying and they didn't think they should continue with her treatment. Apparently they had tried to stick her an additional 6 times with an IV! She was with her nana but for some reason the nurses didn't think to call us to ask us what to do because they knew Web was picking me and Robert up from the hospital. Needless, to say we told them to stop and we were immediately on our way to get Caroline instead of going home. Caroline was calm by the time we got there, but apparently she had been crying for 2 hours. There are no words to describe how I felt. It was borderline abuse and Web nor I wasn't there to console her. It was all I could do to not go postal on someone. We packed her stuff up and immediately left. Web told the nurse how we felt and we received a phone call from the boss woman that afternoon. She then proceeds to tell Web it wasn't 6 IV sticks it was 4. Um ok, well now we not only think you suck but we now have no trust in you because you have changed your story. The dr. called us the next day and we told him that we would be in Omaha in November and we would give her PAM at that time, and maybe in February we will be back at his clinic. Sadly, we have been told he is the only dr. in OK that gives PAM. I am going to research it a little more. I am hopeful that since Caroline is turning 2 we can decrease the months of how often to take it. So instead of every 3 months, do it every 4. If that's the case, then Caroline and I will be going to Omaha every 4 months. Shame on us for trying to do a lot in one week, but shame on the clinic for not calling us.
BUT, we are all home now. Definitely not the homecoming we planned. Poor Robert, didn't get any pictures of coming home. He is being such a good baby. Sleeping and eating extremely well. KNOCK ON WOOD. Caroline is a great big sister! She loves her Baby Bubba Robert! I am definitely feeling torn on playing with her vs. feeding him, changing him, etc. But hoping once I can do more post surgery, she and I can have some fun! Like SWIM! Caroline is actually walking and jumping in the pool! She is having such a good time and I can't do it with her. It's definitely one of my low points of being a mommy. But in just 5 short weeks I should be back to normal. Whatever that is!
Thank you all for the wonderful well wishes! We truly are a very blessed family.
Love to all!
The Browne Family of 4
Thursday, August 11, 2011
tick tock tick tock
We can officially start counting down the days to hours. I can't believe we are almost here. I remember finding out I was pregnant on December 21st and thinking August was nowhere in sight! Here we are! Hot, humid and ready to have BBB. We are very excited, but yet I am very anxious, scared, overcome with crazy emotions. I cried pretty much all day yesterday thinking that this was it, no turning back. Caroline would no longer be an only child but be a big sister.
And yesterday she proved just how much older she is getting! She climbed the stairs all by herself! Actually, she didn't even tell us she was interested! How dare she!
Caroline didn't think she needed a nap yesterday, so by the time Web got home from work, I needed a 30 minute cat nap. Just 30 minutes to revive me for dinner. So, I went to our room laid down on the love seat and relaxed. Web checked the mail, brought back some catalogs and went back to Caroline. In those 2 minutes, Caroline was off! She literally was on the 4th step without any assistance or anyone watching her for that matter. Web yelled for me to come here, said I didn't want to miss it. So I assumed she was trying to pull up into a standing position. As of now, she gets on all 4's, but hasn't figured out how to pull herself up. Well there she was! Literally climbing stairs! Which means she is weight bearing without water! HUGE. She got all the way to the top of the stairs and said, "I DID IT"! Well more tears. I think I cried all evening just thinking about it. Actually I am getting teary eyed typing about it. We have spent the past 17 weeks praying, hoping, that one day Caroline will achieve this accomplishment. And not only did she do it, but she did it in a hip brace! HUGE again. Can you even imagine what she will do without the brace? I am happy and scared just thinking about it. And of course, Caroline's timing couldn't be better. I mean she would give me extra grey hairs 5 days before her brother is supposed to be here! And to think next week she will be getting PAM, which will make her in less pain, and stronger! There is no telling what she will accomplish. I cannot wait until her brace comes off!
Well that is all for now. As you can see, we have had a busy day and it's not going to stop these next 4 days. We have a lot on our plate; ie having a baby, PAM treatment, post-surgery on me. But if I have learned anything in the past 21 months, Web and I can do it. We might not know how we are going to do it, but we will figure it out!
Thank you all for your prayers!
Love to you all!
And yesterday she proved just how much older she is getting! She climbed the stairs all by herself! Actually, she didn't even tell us she was interested! How dare she!
Caroline didn't think she needed a nap yesterday, so by the time Web got home from work, I needed a 30 minute cat nap. Just 30 minutes to revive me for dinner. So, I went to our room laid down on the love seat and relaxed. Web checked the mail, brought back some catalogs and went back to Caroline. In those 2 minutes, Caroline was off! She literally was on the 4th step without any assistance or anyone watching her for that matter. Web yelled for me to come here, said I didn't want to miss it. So I assumed she was trying to pull up into a standing position. As of now, she gets on all 4's, but hasn't figured out how to pull herself up. Well there she was! Literally climbing stairs! Which means she is weight bearing without water! HUGE. She got all the way to the top of the stairs and said, "I DID IT"! Well more tears. I think I cried all evening just thinking about it. Actually I am getting teary eyed typing about it. We have spent the past 17 weeks praying, hoping, that one day Caroline will achieve this accomplishment. And not only did she do it, but she did it in a hip brace! HUGE again. Can you even imagine what she will do without the brace? I am happy and scared just thinking about it. And of course, Caroline's timing couldn't be better. I mean she would give me extra grey hairs 5 days before her brother is supposed to be here! And to think next week she will be getting PAM, which will make her in less pain, and stronger! There is no telling what she will accomplish. I cannot wait until her brace comes off!
Well that is all for now. As you can see, we have had a busy day and it's not going to stop these next 4 days. We have a lot on our plate; ie having a baby, PAM treatment, post-surgery on me. But if I have learned anything in the past 21 months, Web and I can do it. We might not know how we are going to do it, but we will figure it out!
Thank you all for your prayers!
Love to you all!
Thursday, July 28, 2011
Quick update
Well not much to update on, but a few of you have asked about Sweet Caroline lately.
We went to our local orthopedic doctor this week. He was happy to see how well she is doing and how well her hip is still in place. He still cannot believe it has stayed in place with no pins, plates, nothing. Just popped back in! Unfortunately, we have to keep the hip brace on for at least another 8 weeks for at least 22-23 hours/day. SUCKS. I so want her to walk. I want her to get on a riding toy and use her legs to push. I just want her to be the almost 2 year old that she deserves to be. She is so ready to be more mobile than she already is. I try not to pick her up as much so she can at least crawl and get some exercise. Of course, this is also the selfish side of me, because it is getting harder for me to hold her! Just yesterday she got in some yoga position, and had both feet and hands on the ground and her bottom was in the air! I held my breath. But she loved it. And there is nothing I can do to stop her. I would bet by the time we have BBB, she will be pulling up on her own.
We asked our ortho dr. if that was ok and he said we couldn't stop her! Which is so true. She is a determined little girl.
He also told us that kids that are in her position are casted or braced for about 6-12 months. And that seems like forever, but if you put numbers to it we are already at 4 months! When we go back at 8 weeks, he will more than likely put her in a walking brace and introduce her to a walker! FINALLY! I told him about BBB joining us in 3 weeks so the sooner the better!
He also wasn't mad that we were already putting her in the tub and pool. I think I told him, that she was advanced.
So all in all it was a good appointment.
We are still needing a nanny, more now that ever. Caroline has 8 more weeks in this brace, that means 8 more weeks that she needs to be picked up, plus a newborn. We have joined another website and hoping we can get some good candidates from them as well.
I am also on my weekly BBB appointments! This pregnancy has flown by. I am sure it's because my weekly countdowns have been about surgeries, casts, braces, not 1st trimester, 2nd trimester. But I promise as soon as BBB is born he will not be forgotten! I am sure he wouldn't allow that anyways. Caroline is slowly getting that mommy has a baby in her belly. That's pretty funny. Of course, I am sure it's because my belly is huge! I am large and in charge! HA!
Hope you all are doing well and trying to stay cool.
Love to all!
We went to our local orthopedic doctor this week. He was happy to see how well she is doing and how well her hip is still in place. He still cannot believe it has stayed in place with no pins, plates, nothing. Just popped back in! Unfortunately, we have to keep the hip brace on for at least another 8 weeks for at least 22-23 hours/day. SUCKS. I so want her to walk. I want her to get on a riding toy and use her legs to push. I just want her to be the almost 2 year old that she deserves to be. She is so ready to be more mobile than she already is. I try not to pick her up as much so she can at least crawl and get some exercise. Of course, this is also the selfish side of me, because it is getting harder for me to hold her! Just yesterday she got in some yoga position, and had both feet and hands on the ground and her bottom was in the air! I held my breath. But she loved it. And there is nothing I can do to stop her. I would bet by the time we have BBB, she will be pulling up on her own.
We asked our ortho dr. if that was ok and he said we couldn't stop her! Which is so true. She is a determined little girl.
He also told us that kids that are in her position are casted or braced for about 6-12 months. And that seems like forever, but if you put numbers to it we are already at 4 months! When we go back at 8 weeks, he will more than likely put her in a walking brace and introduce her to a walker! FINALLY! I told him about BBB joining us in 3 weeks so the sooner the better!
He also wasn't mad that we were already putting her in the tub and pool. I think I told him, that she was advanced.
So all in all it was a good appointment.
We are still needing a nanny, more now that ever. Caroline has 8 more weeks in this brace, that means 8 more weeks that she needs to be picked up, plus a newborn. We have joined another website and hoping we can get some good candidates from them as well.
I am also on my weekly BBB appointments! This pregnancy has flown by. I am sure it's because my weekly countdowns have been about surgeries, casts, braces, not 1st trimester, 2nd trimester. But I promise as soon as BBB is born he will not be forgotten! I am sure he wouldn't allow that anyways. Caroline is slowly getting that mommy has a baby in her belly. That's pretty funny. Of course, I am sure it's because my belly is huge! I am large and in charge! HA!
Hope you all are doing well and trying to stay cool.
Love to all!
Tuesday, July 19, 2011
I was not made to be a teacher.
Actually, I think I could teach. But I was not made to be a nursery school worker. Every Tuesday, I take Caroline to Mothers Day Out, but like I said last time, there is nothing Out about it for me. I am there with her the whole time. There were 8 other kids today and it literally sucked the life right out of me. I think nursery school workers are saints. I think they are probably under paid, and definitely over worked. I see these teachers literally just rotate kids between diaper changes, playing, giving them their sippy cups, all while hoping no one is escaping out the door! They are truly amazing people.
I so need a nanny but I am still not quite there to accept defeat. I really really want to be able to do it all. I have heard from a few people that are interested, but I can't bring myself to talking to them. I know I need to. I know I need to get some help, but I don't wanna. I also know I sound like a child when I say it like that. I wish this whole process was over. I am 35 weeks pregnant and you can ask my husband, not my usual cheerful self! But he still loves me. And I love him.
As for Caroline and her brace, she is doing well! If she had any control of the situation I am sure she would tell us to take the brace off. She has tried more than once to pull up in the brace! Not a good thing. We go back to Dr. Herndon next week and I am hoping we can take the brace off part time. For one then maybe she can start being mobile and I can maybe skip out on MDO and leave her, but mainly because I think she is just as frustrated with it as I am!
BBB is growing! We are still on schedule to deliver on August 15th at 7AM! BRING IT!
Love to all!
I so need a nanny but I am still not quite there to accept defeat. I really really want to be able to do it all. I have heard from a few people that are interested, but I can't bring myself to talking to them. I know I need to. I know I need to get some help, but I don't wanna. I also know I sound like a child when I say it like that. I wish this whole process was over. I am 35 weeks pregnant and you can ask my husband, not my usual cheerful self! But he still loves me. And I love him.
As for Caroline and her brace, she is doing well! If she had any control of the situation I am sure she would tell us to take the brace off. She has tried more than once to pull up in the brace! Not a good thing. We go back to Dr. Herndon next week and I am hoping we can take the brace off part time. For one then maybe she can start being mobile and I can maybe skip out on MDO and leave her, but mainly because I think she is just as frustrated with it as I am!
BBB is growing! We are still on schedule to deliver on August 15th at 7AM! BRING IT!
Love to all!
Tuesday, July 12, 2011
Baths, Baths, Baths
We broke the rules. Caroline is taking baths. We've noticed in the last couple of days that when we take the brace off to change her diaper, she kicks her legs and straightens them out. And she is much easier to maneuver to put on/off the brace. She is not nearly as stiff and sore as she was in the beginning. So the 1st nights bath was simple, I didn't wash her hair, barely touched her with a washcloth. We just wanted her to get used to sitting up without the brace and in water. By night 2, we were washing hair! She is loving it. She kicks and splashes and having a grand time! We might be putting her in the pool this weekend. Shhhh don't tell our doctors!
I am also in the hunt for a part time nanny. I have succumbed to the fact that I can't do it all. This has taken a huge toll on my pride and I am not too happy about it. But with BBB coming sooner than later and Caroline not walking I really have no choice.
So if you know of any PT nannies in the OKC area, PLEASE send them my way. I have a few feelers out there, so hoping to start interviewing soon.
Right now we have Caroline in Mother's Day Out, but there is nothing Out about it for me. I take her, play with her, walk her to the gym, play with her in the gym, sit with her at lunch, take her home right before nap time. Not only am I with her, but I am with 8 other 14-20 month olds. So as you can imagine, there is nothing relaxing about it. I am hoping that our PT nanny can be her 1 on 1 aide and I can stay home with BBB. If I can't find anyone, then we will more than likely have to pull Caroline out of MDO and that is not fair to her. She loves it. Loves the kids, loves the music, loves it all. I have no idea how long we will need a 1 on 1 aide but probably at least through the year because she isn't walking. And in November, we have surgery #2 and that will put her back as well.
I know I am all over the place right now, but I am a little overwhelmed with decisions for Caroline right now. And wouldn't it be nice if everything could be resolved before BBB? HA! I guess I can always hold my breath and hope!
I don't mean for this blog to be me complaining, but today was just one of those days of frustrations for Caroline. I do not think it is fair that she has OI, nor do I think it's fair that I have to go to Mom's Day Out and not enjoy Mom's Day Out! BUT I would absolutely do anything for her and when I see the excitement on her face when she is at school it's totally worth it. I guess today is just one of my pity days!
Love to all!
Oh yeah, went to dr. yesterday and BBB is doing fine and still measuring ahead of the game. Less than 5 weeks!
I am also in the hunt for a part time nanny. I have succumbed to the fact that I can't do it all. This has taken a huge toll on my pride and I am not too happy about it. But with BBB coming sooner than later and Caroline not walking I really have no choice.
So if you know of any PT nannies in the OKC area, PLEASE send them my way. I have a few feelers out there, so hoping to start interviewing soon.
Right now we have Caroline in Mother's Day Out, but there is nothing Out about it for me. I take her, play with her, walk her to the gym, play with her in the gym, sit with her at lunch, take her home right before nap time. Not only am I with her, but I am with 8 other 14-20 month olds. So as you can imagine, there is nothing relaxing about it. I am hoping that our PT nanny can be her 1 on 1 aide and I can stay home with BBB. If I can't find anyone, then we will more than likely have to pull Caroline out of MDO and that is not fair to her. She loves it. Loves the kids, loves the music, loves it all. I have no idea how long we will need a 1 on 1 aide but probably at least through the year because she isn't walking. And in November, we have surgery #2 and that will put her back as well.
I know I am all over the place right now, but I am a little overwhelmed with decisions for Caroline right now. And wouldn't it be nice if everything could be resolved before BBB? HA! I guess I can always hold my breath and hope!
I don't mean for this blog to be me complaining, but today was just one of those days of frustrations for Caroline. I do not think it is fair that she has OI, nor do I think it's fair that I have to go to Mom's Day Out and not enjoy Mom's Day Out! BUT I would absolutely do anything for her and when I see the excitement on her face when she is at school it's totally worth it. I guess today is just one of my pity days!
Love to all!
Oh yeah, went to dr. yesterday and BBB is doing fine and still measuring ahead of the game. Less than 5 weeks!
Wednesday, June 29, 2011
Yet another new countdown!
I cannot believe it's been 5 weeks since my last post. Not much had changed, so I guess there was nothing to update! Caroline was still in a cast and I was/am still pregnant and getting bigger by the minute. And that is no exaggeration. I feel huge. I am sure the 100+ degree temps is not helping!
So today was our "cast removal day". Caroline did great all things considering. I mean there was a saw was near her face and they cut off the cast. As soon as we went back to the room she immediately said, "NO". She knew exactly what was going on. I tried talking her through it this morning, and she said, "cut off", but I don't think she knew what cut meant. After that, we went downstairs to orthotics and she was fitted for a hip brace, then back upstairs to x-rays and questions. Being pregnant during this time definitely has its benefits. I can't physically be in the room during x-rays so I got to miss them. But Web did tell me it was not a pleasant experience. Imagine your legs being in the same position for 11 weeks, and all of a sudden a complete stranger is moving them and taking an x-ray. Needless to say she was not happy. We even had tylenol with codeine in her and she still wasn't happy.
But when it's all said and done she is ok. She is much lighter, which I welcome with open arms. My lower back was officially hurting.
So onto the bad news, because you know nothing is ever simple.
Caroline has to be in this hip brace, full time for a month. Night, day, all the time. Our dr. is afraid that if we take her out of it to bathe her or to let her swim she will start kicking her leg (of course she would) and that could hinder the hip healing process. Our dr. did tell us he is conservative and would rather be safe than sorry. After 11 weeks in a cast, we really don't want the hip to move out of place so we might as well suck it up and just deal with it. So, in 4 weeks we go back and hopefully at that time, she will just be wearing the brace at night time. Web and I have yet another learning curve on how to care for her, change her diaper, etc. But we've done it twice now, so what's a 3rd time? What's that saying, "3rd times a charm"? And nothing like up to the last minute. I am literally having BBB in 6 1/2 weeks unless he decides to join us earlier. So that will give us approximately 19 days of freedom. We started this journey mid April and when it's all said and done we will have about 19 days without a cast or a full time brace! What a wild trip! I guess we should just count our blessings that this has been a super, easy pregnancy!
/knocking on wood/
Thank you all so much for your prayers, kind words, cards, balloons, toys, and food! Web, Caroline and I absolutely could not have done this without your support!
Love to all! US
So today was our "cast removal day". Caroline did great all things considering. I mean there was a saw was near her face and they cut off the cast. As soon as we went back to the room she immediately said, "NO". She knew exactly what was going on. I tried talking her through it this morning, and she said, "cut off", but I don't think she knew what cut meant. After that, we went downstairs to orthotics and she was fitted for a hip brace, then back upstairs to x-rays and questions. Being pregnant during this time definitely has its benefits. I can't physically be in the room during x-rays so I got to miss them. But Web did tell me it was not a pleasant experience. Imagine your legs being in the same position for 11 weeks, and all of a sudden a complete stranger is moving them and taking an x-ray. Needless to say she was not happy. We even had tylenol with codeine in her and she still wasn't happy.
But when it's all said and done she is ok. She is much lighter, which I welcome with open arms. My lower back was officially hurting.
So onto the bad news, because you know nothing is ever simple.
Caroline has to be in this hip brace, full time for a month. Night, day, all the time. Our dr. is afraid that if we take her out of it to bathe her or to let her swim she will start kicking her leg (of course she would) and that could hinder the hip healing process. Our dr. did tell us he is conservative and would rather be safe than sorry. After 11 weeks in a cast, we really don't want the hip to move out of place so we might as well suck it up and just deal with it. So, in 4 weeks we go back and hopefully at that time, she will just be wearing the brace at night time. Web and I have yet another learning curve on how to care for her, change her diaper, etc. But we've done it twice now, so what's a 3rd time? What's that saying, "3rd times a charm"? And nothing like up to the last minute. I am literally having BBB in 6 1/2 weeks unless he decides to join us earlier. So that will give us approximately 19 days of freedom. We started this journey mid April and when it's all said and done we will have about 19 days without a cast or a full time brace! What a wild trip! I guess we should just count our blessings that this has been a super, easy pregnancy!
/knocking on wood/
Thank you all so much for your prayers, kind words, cards, balloons, toys, and food! Web, Caroline and I absolutely could not have done this without your support!
Love to all! US
Thursday, June 2, 2011
New countdown has begun!
Well we are back from Omaha. I am sorry I am just now updating, but there is never a dull moment with Caroline! And when she naps I try to rest, or do laundry, or clean up her new found love of play doh. Our Omaha trip couldn't have gone any smoother. Caroline enjoyed movies in the back, while Web and I just got to talk and relax. We met some awesome OI families at the Rainbow House the evening we got there and it was so nice to talk to families who are going through the same thing you are face to face. We could share stories, give examples, or just be a sounding board for your current frustrations and troubles. It was very nice. The next morning we were at the hospital and Dr. E was willing to start early, which made us feel better. The wait in the pre-op room is excruciating. You see kids being rolled by your room to go into surgery and you are just holding your child hoping yours is next, then also hoping she is not next because you don't want to let go. We gave Dr. E our requests for the new cast, shorter on the body, feet and/or toes free, and if at all possible her lower left leg free. He said he would do what he could. He also told us he wasn't sure if he was going to need to do the arthrogram. It depended on what the x-ray looked like.
C was given her happy juice, she wheeled away, I cried a little hysterically, got it together and went to wait. Waiting rooms suck.
Literally within an hour Dr. E was out and talking to us! He didn't have to do the arthrogram, Caroline was cleaned up and her cast was back on with all our requests! AND on top of that, it only needs to be on for 5 weeks! That's because of Web's 10 year college reunion, but whatever works! 5 weeks is better than 6! We met her in the hall after recovery, went to her room and the next morning we were on our way back to Oklahoma. It was such a quick turn around, but we are so happy with the results. On her discharge papers, it said to contact Dr. Herndon, our local ortho for cast removal in 5 weeks. And I promise you, we weren't off the hospital grounds, and I called the office and made the appointment. I needed a date to look forward to. So, on June 29th at 10 AM, Caroline's cast will be off! We will be able to put her in the pool and let her build up her muscle strength. I am trying to think of anything and everything to do in the next 27 days. Next week we are pretty full, the following week kind of full. Our weekends are definitely filling up. Anything we can do to make the time fly I am all for it! I personally think the next 27 days will drag. But we are finally on the downward slope, and so excited.
On another exciting note, her new cast has proven that she is definitely ready for it to be off as well. She is officially crawling with her cast. It's not the prettiest crawl, and she definitely tires out quickly, but it is improvement. And it's also helping her muscles in her free leg and her upper body. It's so nice to see her on her belly and not lying on her back.
All in all, we doing well!
Baby Boy is continuing to kick me constantly to let me know he is around as well, and not to forget him! I am sad to say, that sometimes I definitely do forget I am pregnant. Then I will feel a kick and the light bulb will go off. If anything, Caroline's surgery has definitely made this an easy pregnancy! By the time the cast is off, we will just have 6 weeks left! WOW! Hard to believe. Thank you all for your prayers, thoughts and positive thinking. It does not go unnoticed!
Love to all!
C was given her happy juice, she wheeled away, I cried a little hysterically, got it together and went to wait. Waiting rooms suck.
Literally within an hour Dr. E was out and talking to us! He didn't have to do the arthrogram, Caroline was cleaned up and her cast was back on with all our requests! AND on top of that, it only needs to be on for 5 weeks! That's because of Web's 10 year college reunion, but whatever works! 5 weeks is better than 6! We met her in the hall after recovery, went to her room and the next morning we were on our way back to Oklahoma. It was such a quick turn around, but we are so happy with the results. On her discharge papers, it said to contact Dr. Herndon, our local ortho for cast removal in 5 weeks. And I promise you, we weren't off the hospital grounds, and I called the office and made the appointment. I needed a date to look forward to. So, on June 29th at 10 AM, Caroline's cast will be off! We will be able to put her in the pool and let her build up her muscle strength. I am trying to think of anything and everything to do in the next 27 days. Next week we are pretty full, the following week kind of full. Our weekends are definitely filling up. Anything we can do to make the time fly I am all for it! I personally think the next 27 days will drag. But we are finally on the downward slope, and so excited.
On another exciting note, her new cast has proven that she is definitely ready for it to be off as well. She is officially crawling with her cast. It's not the prettiest crawl, and she definitely tires out quickly, but it is improvement. And it's also helping her muscles in her free leg and her upper body. It's so nice to see her on her belly and not lying on her back.
All in all, we doing well!
Baby Boy is continuing to kick me constantly to let me know he is around as well, and not to forget him! I am sad to say, that sometimes I definitely do forget I am pregnant. Then I will feel a kick and the light bulb will go off. If anything, Caroline's surgery has definitely made this an easy pregnancy! By the time the cast is off, we will just have 6 weeks left! WOW! Hard to believe. Thank you all for your prayers, thoughts and positive thinking. It does not go unnoticed!
Love to all!
Wednesday, May 18, 2011
8 more days, but who is counting??!?!?
ME! If I would allow myself I would be counting the hours and minutes. Next week I will probably go there, but for now, I will just count days. One week from today, we will be on our way to Omaha! Although I am not excited about the 8 hour drive with Caroline and a bladder that can't contain itself, I am super pumped about Caroline getting a clean cast! Bless her heart, she stinks! As of yesterday, she is officially a stinky baby. Baby powder used to help me control some of the smell, but we are past that phase. Yesterday, Caroline woke up soaked. Soaked to the point that I had to strip sheets and mattress pad! Had to give her an early morning sponge bath, which she was not happy about, plus put the hair dryer on cool to dry her up. The inside of the cast is totally soiled and there is nothing we can really do about it. I change her diaper as often as possible, even if she has had nothing to drink. Better safe than sorry.
I feel bad for the surgical nurses that have to clean her up next Thursday before her new cast is put on. Luckily they have masks to help with the smell!
Our hope is to have her procedure at 9am, under general anaesthesia (boooooo, I hate that stuff), and be in recovery by 11ish. There is no cutting in this procedure, just a big needle going in her hip to make sure all her tendons, muscles, tissues, etc. are doing what they should be doing, then clean her up and put the new body cast on. THEN, 6 weeks later we should be done and done! I cannot tell you how long this 6 weeks have been to me. I start having my own pity party, then I think of Caroline and what she must be thinking and feeling. Poor thing, she is trying every maneuver possible to get herself out of the cast. I am going to ask Dr. E if he could at least let her see her toes in the next cast, maybe even her feet? Then she could have a little grip when we put her on her belly and maybe, just maybe she could crawl a little. She has definitely tried to crawl, but she has no help with her lower body and it's just close to impossible.
It would also help me out tremendously! I am 26 weeks pregnant right now and her little 18lb+casted body is starting to wear on me a little bit! So if she could CRAWL to the diaper change all the better!
Well, that's really all I can think of for now to update. Many of you have asked if this was it for her casting. And as much as I would love to say YES, it's not. 6 more weeks. BUT, she is a trooper and a heck of a lot more patient than me!
I will update you all once we are home from Omaha. It will be a quick trip so chances are we will be home late Friday or early Saturday! Whoah hoah!
Love to all!
Thursday, May 5, 2011
1/2 way through the 1st cast!
As of today, we are officially 3 weeks into her 6 week cast. So we are 1/2 way there! It's amazing how you look at things from a date perspective. I could tell you what every day of the month is in May. If you say, "I wonder what day May 24th is?" I would say without a moments pause Tuesday. I am sure the 6 week mark I will start the hourly countdown!
I am sorry I am just now updating. It's amazing how much time it takes caring for a child in a body cast. Poor Caroline was so mobile and independent before her surgery. Now she can only sit up if we have her propped up and if a toy, sippy cup, food, etc falls she cannot reach it. So guess who gets to reach for her? Yep. Me. She does try, and if I step away for a minute, she will scream and let me know. The girl has got a great set of lungs! She also hates being stuck in the house. Every morning she says, "ready, go". Sometimes I just put her in the car and I make up errands. Instead of putting letters in the mailbox for the mailman to pick up, we'll drop them off at the post office. Or, I will go get a Sonic or McD's drink! Anything so she can GO. I did learn that she fits in a Sam's shopping cart! It was one of the best days! We went up and down every aisle. This week I stayed pretty busy with my own doctor appointments, so we didn't make a Sam's trip, but it will definitely be on next weeks agenda. Needless to say, we will be stocked up on toilet paper and paper towels!
Besides being bored out of her mind, C is doing great! I would say 5 out of 7 nights she is sleeping through, with a little help of Tylenol Codeine. When she doesn't it's mainly because Web and I have messed up her nightly routine, aka OKC Thunder basketball games! She is not a fan of Web being gone both day and night. One night when we were home and she was uncontrollable, she wouldn't let me near her, she only wanted her daddy. Which was fine by me. Guess who got sleep that night?!? We introduce her to new toys or books almost on a daily basis. But who can blame us? She is BORED OUT OF HER MIND!
We did find a stroller that works, so that has helped me during the days. Anything to keep her occupied. Any and all ideas are definitely welcome!
We go back to Omaha 3 weeks from yesterday! May 25th. We are driving this time. 8 hour drive, with a 27 week pregnant mom, who constantly needs to go the bathroom, and an 18 month old who is in a body cast. Should be fun times! On May 26th, Dr. E will take off her smelly cast, do an arthrogram (http://arthritis.webmd.com/arthrogram-joint-x-ray), then if all is well put a new cast on her. I have thought about paying a nurse under the table to clean her smelly body, even more so than they usually do! Trust me, it would be worth it. We are 3 weeks into this cast and she stinks. There is no way around it.
BBB is doing well! I think, hope, pray, fingers and toes crossed, that today was my last high risk appt! All looked well. We are 24 weeks pregnant and he is measuring 25 weeks. Hooray! His heart looked great today. The high risk dr. suggested maybe coming back in 4-6 weeks to make sure he is still growing and on track. But he said that is up to us and our regular dr. I guess if she wants us to do another one we will, but as of now I am going with the thought that we are DONE! Thank goodness. Not that I feel any more at east, because as we all know anything can happen, but at least I can say we did what we were supposed to do.
That's all I can think of for right now. If you are still praying for our little family, our biggest prayer is comfort for Caroline and a healthy baby boy!
Love to all.
Tuesday, April 19, 2011
Leaving on a jet plane!
I am so happy. I never thought we would be able to leave early. On our original plan, I was supposed to be sitting in this hotel room with Caroline's one leg splinted, Web was supposed to be back in OKC with Kelsey, and we would be preparing for surgery #2. But like I said in our last post, my timeline has seriously been interrupted!
We were released from the hospital yesterday, 1 day earlier than planned! Caroline didn't need the IV morphine drip anymore. Her pain meds were all orally, so it was hard to justify us staying another night. Not that our nights are easy. Caroline is TICKED OFF. Poor girl, she usually sleeps on her belly, with her legs tucked into her chest. She is so mad that she can't roll over. The last couple nights at the hospital we were literally up with her for hours while she fought the cast. At one time, she was pulling down on the cast thinking she could take it off. Poor thing. It's the absolute worst thing in the world watching your child cry out in frustration/pain. At one time during the last nights at the hospital when I was holding her and we were both crying, I was trying to talk myself into having a conversation with Dr. E about removing the hip spica and saying forget the hip. Who cares if she has a limp? But then I realized that was really selfish of me. So then I thought, ok maybe we can remove the bar between her legs. Because it literally sits right where Baby Boy Browne (BBB) is and he was letting me know he was not comfortable the other night! Imagine a 17 month old crying because she's not comfy, plus a 22 week old fetus moving around in your belly because he's not comfy, plus a mommy who is in desperate need of sleep crying because she has no idea what to do! I am sure the night nurse was petrified to come into our room!
But silver lining. Caroline slept 6 hours in a row last night! Woke up for an hour, frustrated, then went back to sleep for 3 hours! I told Web this morning that she is preparing me for middle of the night feedings for BBB. We are so happy that we get to go home today as a family! As soon as we get home, we plan on hitting Toys R Us, and getting Caroline her own car so she can be transported around the house, plus be outside. It will make all of our lives easier.
As of now, the plan is to be back in Omaha in 5-6 weeks, have her cast removed, put a dye in her hip to make sure the hip is still in place, then sadly put her in another hip spica cast for 6 weeks. Then we will have approx. 4 weeks with Caroline without a cast, then BBB will join us! Never a dull moment! Oh yeah then sometime later in the year, the 4 of us will be back in Omaha for right femur surgery. Oye veh.
We would like to say thank you again for all your prayers and gifts. Web and I don't even have the words to express how grateful we are to you all. I know I owe tons of calls to many of you, and one of these days I will definitely call you back! Please know that your gifts of love and prayers did not go unnoticed. You can especially tell by looking at our bellies! I have never eaten out so much, that I can't wait to get home and just make a salad and put some chicken on the grill!
Thursday, April 14, 2011
Roller Coaster Ride!
Well I can definitely say today has been one hell of a ride! First let me start with yesterday, our flights, connection, rental car, hotel, every thing was fine. I let Caroline take as long as a bath as she wanted. I figured it was her last one for 6-8 weeks so she could get as wrinkly as she wanted. I also let her stay up later than usual, because I knew she would be sleeping for the next 24-48 hours. Spoiled little girl. Web and I were asleep by the 10 o'clock local news all was well. Then around midnight we hear this loud beep, then another one, then another. Web and I get up and realized the fire/smoke alarm is beeping, and that the battery must be low. Nice. So Web takes it apart, but the main piece keeps beeping! He is so frustrated and tired that he goes out in the hall and puts it on top of the vending machine! We hear a faint beep for awhile but eventually it stops. The best part is it was still there this morning! HA!
This morning we get to the hospital and I am a basket case. Bonafide lunatic that won't stop crying. I cried to the nurse, to the doctor, to the other nurse, to the anesthesiologist, Web, just crying. Huge tears just rolling down my face, no control. I was petrified that she wouldn't wake up from her anesthesia and we wouldn't be bringing her home. I have watched way too many episodes of General Hospital and Grey's Anatomy. I trusted Dr. E 150% so it wasn't the surgery itself, it was what could happen. We felt totally comfortable with the whole surgical staff, I was just a crying mom. No one judged me, they even gave us time to ourselves once they wheeled her away but at that time I just wanted them to start so I could hold Caroline again.
The nurses must have known how freaked out I was because we got personal updates probably close to every 30 minutes.
Before surgery started Dr. E mentioned that he might go ahead and do her right tibia, and come back and do the hip and femur in approx. 4-6 weeks. Um, no, I thought, that doesn't fit into my plans. I am here for 2 weeks, 6-8 weeks cast is off, I have 2 months with Caroline to play, then Baby Boy Browne joins us and we progress forward! This absolutely did not fit into my timeline. But as I am learning as a mom, nothing is really in my timeline!
He told us he would see how strong her bones are and we would go from there. So as we sat in the waiting room, we had no idea what was going to happen. We tried thinking of "what if" plans, but then just thought we should wait and see what happens.
About 4 hours into the surgery, Dr. E comes out and I think, sweet, done. Not so much.
He was able to pop Caroline's hip back into socket and wanted to see if that worked, plus still do the right tibia. Excuse me? Pop her hip back in? We couldn't do that before? Well no. Because for one, Sweet C, doesn't like anyone touching her legs and two, her bones are so fragile that no one has ever wanted to try in fear that they would break the femur. So since she was under and if he broke it, he could fix it, so he tried. And sure enough, bam it was in place just like that. Now this doesn't at all mean she is "cured". It just means we are going to give it the old college try. He put in the right tibia rod, popped the hip in place and put her in a pink, hip spica cast. I chose pink. Web didn't even bother to argue that one, knowing he wouldn't win! 2 hours later, C is finally in recovery. Best thing ever, getting to see her after 6 hours. More tears, more new nurses thinking "oh geez, she's a cryer". My eyes have never hurt so bad.
So now what?
Now we wait. She has an epidural which is helping with pain management, plus valium and tylenol. She wakes up asking for Elmo, and when the nurses give her medicine she says, "thank you". Nurses love her manners! I think it will definitely work to her advantage later in the week!
Dr. E wants us to stay approx. 5 days in the hospital. Take more x-rays at 6 weeks and find out if her hip stayed in place. If her hip stayed in place, then we have the following options:
1. Take her out of cast, put her in a hip brace either at night or full time.
2. Keep her in a cast for another 6 weeks to prevent any mobility.
Of course, I would love #1. My sweet little 18 lb 4 oz baby is heavy with this cast on! I mean HEAVY.
Or, hip pops out of place and we are back to square one. Surgery on the hip and right femur.
No matter what, we will eventually need to rod her right femur, but as of now that's pushed out. Dr. E explained that one rodding surgery recovery is a lot easier than 4 plus a hip, so not to worry on the right femur. Plus it's not nearly as bowed as her left femur.
As you can see, we have been on a hell of a ride today. Our emotions have been all over the board. We went from this being the short, left side only surgery to both sides, with hip and only one surgery! We have had to cancel flights, change days with the kennel for Kelsey, re-arrange transportation, plus love on our Sweet Caroline.
I can say it is 9 pm, Caroline is asleep, Web is at the hotel and I am going to sleep for the next 3 hours before it's time for valium again. I am sure I am missing more info, and I am sure tomorrow when I read what I wrote I will be appalled by my spelling and run on sentences, but I feel like my lack of sleep is a good excuse! Thank you all for prayers, texts, emails, calls, everything. We have never felt so much love!
Wednesday, April 6, 2011
Getting closer
One week from tonight, Web, Caroline and I will be in Omaha at the Comfort Inn Suites trying to sleep. Well Caroline will be asleep, because she won't know any different, but Web and I will probably be staring up at the ceilings. Actually, I will be keeping myself busy by packing an overnight bag for the hospital and Web will be playing solitaire on the iPad. Whatever we can do to avoid the inevitable. I know I won't sleep because we have to be at the hospital at 6, and I will be looking at the clock every hour on the hour making sure we aren't late. I still have images of what that morning will be like. I have images I haven't even shared, and I won't share. Just in case, plus they are sad. I have no idea if I have everything that we need. I know that her Easter basket plus all the goodies that go in it are in a box and ready to be mailed. I know that the hospital room has a DVD player, so Caroline and I will be watching plenty of Elmo! Or Mo as she likes to call him. Other than that, I really don't know much else. I have no idea what to expect, but I have talked to some moms that have gone through this similar experience and I know Caroline will benefit from the surgeries tremendously. But still the thought of her being under general anaesthesia for 4 hours, then another 6 makes me want to vomit.
Good news to report! Last week Caroline had a DEXA scan. She hated every second of it, but what 17 month old wants to lie still while a big machine is going over them?
We got a call from the doctor and he was so pleased with her results. I will spare you all the medical jargon. It can be too cumbersome. But long story short, her lumbar area shows a 75 % increase in her Bone Mineral Density (BMD)!!! 75% increase in one year! Hello! This is unbelievable. Now a spine is usually going to do 4 times better than femurs, but considering she can pull herself to a standing position I would say her femurs have an increase too! HOORAY! Seriously, this is great news. All the PAM treatments that we were hesitant about in the beginning are working! All the IVs that I have cried about, and Caroline has cried about have been worth it! Our doctor would like to think that her z score which was originally an -5 in probably more like an -2. But since we don't have all of the information from her 1st DEXA scan and this was a different machine he can't guarantee the -2, but he can guarantee a 75% increase on the lumbar area! He is very hopeful that when Dr. E does the rodding surgery next week he will see strong bones! Which as you can imagine will only help him in the surgery.
We will do another DEXA scan in 6 months to get a better z score, plus we will be able to compare apples to apples, since it will be the same scans as this last time plus same machine.
Web and I are so happy. We deserve good news.
I will try and update one more time before we leave. If I don't, then for sure once we have one surgery complete!
Thank you all again for your continued prayer, positive thinking and just thinking about us. We appreciate it all so much.
Love to all!
Tuesday, March 29, 2011
Gray hair and sleepless nights
Well another sleepless night. I am losing count of how many nights I am not sleeping. And I can't even blame it on my pregnancy! I feel fine. Baby is doing great, I am 19 weeks pregnant and knock on all the wood in the house, I couldn't feel better pregnancy speaking.
But there is that ugly topic of Caroline's surgery. I literally cannot stop thinking about it.
I imagine me handing her over to the nurses, and crying in Web's arms as they take her away. Or I imagine me and her in the operating room, and I am singing my personal song to her as the medicine goes in her and she falls asleep. I imagine sitting in the waiting room staring at the clock and Dr. E telling us everything went ok. I then imagine him telling us, "see ya next week for the next surgery." It's never ending. I imagine all the things I need to do before we leave. I imagine all the things I can do for her while we are in the hospital. I imagine all the things I can do for her while we are at the hotel waiting for surgery #2, which will take longer. I then imagine surgery #2 and staring at the clock for an additional 2 hours. It's literally all I think about. Then I will be driving down the road and I will turn around and see her smiling face playing with Elmo, and I will think that for at least 6-8 weeks she won't be back there because she will be in a body cast and I will miss that so much. She and I love being in the car together and love running errands. Even if it is just up the corner. It's always the 2 of us, me and Caroline. We put on music and dance in the car. I am absolutely going to miss those random moments. But with all that being said, I also know that this surgery will help Caroline. She will walk. She will be able to do things that other kids can do.
Recently I was in Tulsa for a girls night out. Web called me on Sunday and asked me when I was coming home. I had tons to do that day, visit with friends, go to QT, you know important stuff! He told me that Caroline was standing! WHAT?!? How could that be? I was literally crying on the Creek Turnpike. How could she be doing that? Her left femur is 70 degrees bowed. How is she not breaking? So I sped through my day as quickly as possible, without being rude and got home. Of course, Caroline didn't stand for me. She didn't stand for me the next day either. I thought Web had made it up. Or maybe he thought he saw her pull up and stand, but maybe it was just her in her plank position. So Tuesday, I am in our closet putting away clothes, I turn around and sure enough there is my Sweet Caroline standing up holding onto the side of the bathtub! She was so confused. She saw one of her bath toys and was trying to reach it, but she was also trying to not twist and hurt herself. You could see the confusion in her face and couldn't definitely hear her frustration. I quietly went to her and showed her how to get down. OH.MY.GOSH. Caroline pulled up on her own and was standing there! It was such a sweet moment but such a scary one.
Caroline will walk. There is no doubt in my mind.
Hence the gray hair and sleepless nights. I can't wait for Caroline to have this surgery so she can show the world all that she can do. But I am scared out of my mind for her to have this surgery. I guess parenthood is a lot scarier than I ever thought it would be, but I wouldn't trade it or her for anything in the whole world.
Love to all!
Tuesday, March 15, 2011
Thinking caps on please!
Ever since we booked Caroline's surgery I have been reading the OI Facebook posts and the Yahoo OI posts all day everyday. Trying to learn as much as possible for post op care in the hospital. We are happy that we are doing this surgery while Caroline is young and she won't remember anything, and hopefully not dangle it over our head when she is older! But how is she supposed to tell us when she needs more medicine? Or if she is in uncomfortable? I guess we'll just learn that new cry like the other cries we know.
I need some advice though. We will be in the hospital for a total of at least 8 days. There are only so many movies, cartoons, bubbles, one can watch or play with. I need toy advice. I read that I should bring something new for Caroline daily. Something to help distract her during the day. Like a surprise.
I need 8-10 ideas. She will only be 17 1/2 months so activities are limited. Plus she will be hospital bed bound. Chances are she won't be able to sit up, but more leaning on a pillow. Also, I would love these ideas to be easy to pack for the ride home, plus cost efficient! We will be there Easter Sunday and of course, I will be bringing her Easter basket. I have already purchased basket ideas. This Easter we are going with a pool theme! Pool towel, pool toys, bathing suit. She will be doing tons of aqua therapy once the cast is off.
So please. Thinking caps ON and send me your ideas!
On another crazy, exciting note, my blog is now being published on 918moms.com and 405moms.com! WHAT?!? How can my "therapy" writing that my friends had me start go "viral"?!?! Well, people know people, who know people. So check out the websites! Tons of savings, information, directories, BLOGS, etc. You name it, more than likely it's on there!
Love to all!
Thursday, March 10, 2011
Decisions, Decisions
This parenting stuff is not easy. I feel like we are constantly being pulled into tough decisions and we will never know if we are making the right one or not. But I guess you just hope and pray that you get it right. Well, that plus crying and begging to GOD that you are doing the right thing! I don't know how many times I have told GOD I would switch places with Caroline if he would let me. I still get angry thinking that this is NOT her fault.
This past week we finally heard back from the dr. in Montreal, he agreed with both doctors on a different level. Yes, she needs to be rodded in all 4 leg long bones, but we also need to address the hip now instead of later. He really is a smart man. He knew exactly how Caroline's legs were placed when she was born, plus knew that she was breached. He asked Web what she was doing with her legs, ie trying to pull up and the dr. said that she will walk! WHAT?!? No one has ever told us that Caroline would walk. We have always been told, "we'll see how she develops" or "she'll let us know if she can walk". NEVER, EVER has anyone said she will walk. I was overwhelmed with emotion. I cannot believe that I will get to see my little girl walk. I think deep down, I have always been preparing myself to see Caroline in a wheelchair but to think she can walk? Truly a miracle. Of course, she will probably need help with a walker, especially for long distance but that is ok by me.
After all of this, we have finally decided that we are going to take Caroline to Omaha for her surgery. Dr. Esposito, who is in Omaha, is on board with Dr. Fassier's assessment and he will be performing the surgery. He will do her left femur and left tibia on April 14th, we will hang out for a week in Omaha, then on April 21st he will do her right femur, tibia, AND hip. This will be a longer surgery and it all makes me super, duper nervous. Caroline will be under general anaesthesia for 6 hours! But we trust our doctor 100%.
We meet next week with our local orthopedic and will "break", no pun intended, the news to him. We are hoping he will be co-operative with her post-op care. I am sure he will be but anxious to talk to him about it. We love Dr. Herndon, and don't want to ruin any relationship we have already built with him.
So as you can see, we have been busy making important decisions for our Sweet Caroline. We absolutely know we made the right decision but we have so many other emotions going through our head. I don't think I will ever get another good nights rest!
Baby #2 is moving right along. I swear sometimes I forget I am pregnant. Then I try to put on a pair of pants that are a little snug in the waist and remember! Now that the nausea and headaches are gone, it's harder to remember! Well at least for now. We go to the high risk dr. in 10 days and we should find out what we are having! We tried this week but its legs were crossed, which tells me it's another girl. But Web is still holding out for a boy. We shall see!
Love to all!
Friday, February 25, 2011
Emotional Week
This has been a crazy emotional week. Caroline had PAM this week and we tried a new regiment. The Omaha protocol is 1 day every 2 months. Our dr. here in OKC, is 3 days every 3 months, and in the end it's double the amount of PAM. After Web and I talked about it endlessly, prayed about it, plus me not sleeping at night thinking about it, we decided that was best for Caroline. We want to get her bones as strong as possible before we put her through surgery. We are hoping we can do one more treatment (3 days) before surgery but more on that later.
Luckily the IV took in 3 times, instead of 5 like last time. The nurses are so nice. They try so hard not to hurt to Caroline. This last time they finally decided to use a longer IV and it worked! Who knew our 15 month old would beed an IV fit for a young child? But her veins are long. Whatever works is my opinion. Caroline did well the 1st day, but definitely by the 3rd day she was done. There are only so many things you can entertain an 15 month old with while sitting in a hospital bed with an IV in her arm. Think about your child, friends child, could you see them sit in one spot for 4 hours, 3 days in a row? Exhausting. By the 3rd hour on the 3rd day I thought I might lose my mind. Poor Caroline, was trying to crawl off the bed! But like I said it is definitely worth it. You should see her right now. She is literally in a plank position trying to figure out how to stand! UGH. There is no stopping this child.
Now surgery. We are still waiting to hear back from the Dr. in Montreal. He has been in Haiti, and got back to the office late this week. My plan is to call him 1st thing Monday morning if I don't hear from him today. My gut is telling me what I think we should do, but I want to hear from him 1st. We definitely need to get the ball rolling because baby #2, will be here before we know it and I would like to have C's surgery done and done!
Speaking of baby #2. We received the test results from my blood work and all looked good. You know it's going to be ok, when the nurse calls over the dr. So yeah! We'll take that good news!
Also, Web and I are super excited to meet a new OI family! We are having them over for dinner Saturday night. There little one isn't here yet, he will be born next month. (the day before my birthday, ps.) We hope we can be some positive influence in the journey that lies ahead of them. It is far from easy, but with good friends, family, prayer, and a little bit of luck they will do just fine!
Love to all!
Thursday, February 10, 2011
SURPRISE!
We're expecting baby #2!!!
Can you even believe it? We are due August 22nd, right in the middle of the hottest month of the year. But oh well! Web and I couldn't be more excited. We know that Caroline will be the best big sister EVER! As you can tell in the new picture, she is already! Her shirt says it all! HA!
Of course, nothing Web and I do is boring. I am considered AMA. AMA? Advanced Maternal Age. Apparently you turn 35 and you are considered AMA and you need to see a high risk doctor. Science is crazy. It goes back to turning 50 you need your colon checked. Lucky for me I really like my regular OB and we trust her 100%. Shout out to Dr. Strebel who reads this blog! We went to our 1st high risk appt on Monday and everything looked great. We go back in 6 weeks, then 4 weeks after that. The baby is measuring 12 weeks which is exactly how far along we are. Yeah! It's weird though. I don't feel nervous about this pregnancy at all. And no, I have no "feeling" of what we are having. I pray Healthy, Web prays healthy boy!
Also we found out we were pregnant on 12/21 and Caroline broke her femur on 12/30. I am already a blubbering fool when Caroline hurts herself, can you even imagine how I am when my hormones are out of whack?!? PLUS, I couldn't be in the x-ray room when she broke, so Web had to do it all. January has been a crazy roller coaster ride!
As for Caroline's surgery we have no clue. We are waiting to hear back from the doctor in Montreal. Once he looks at her x-rays we are hopeful he can give us his opinion on her hip. So it's a waiting game right now. We are still on the schedule in OKC to have surgery on April 4th. I pray we don't have to do surgery on her hip. And we can just do the rodding in her legs. But we need a 3rd opinion.
Life at the Browne house is as always fun, busy times!
Love to all!
Sunday, February 6, 2011
A little normalcy
This week has been a weird blessing. Our Sweet Caroline got sick! She actually had a non OI related illness. We have never experienced this before, and as weird as it seems it felt good to be "normal". Caroline has never been sick. I have taken pride in knowing that our daughter has never had a cold, runny nose, cough, ear aches, stomach issues, nothing. But believe me she has had her fair share of doctors appointments! Poor girl has had more x-rays than the average man.
So last Monday I took Caroline to the day care at church so I could go to Mom's Morning. Have I ever mentioned Mom's Morning before? I really like it. It's a bunch of mom's with all age range of kids, we read a book, discuss, share stories, prayer requests, journaling, etc. Our last book was 5 Love Languages of Children. Caroline was too young to figure out her love language, but I got to practice on Web. Definitely "quality time". This semester we are reading Love and Logic Magic for Early Childhood. It's a really good book. We are about to start the "Uh Oh" song at our house, but might need to change it to "Oh No" because Caroline says uh oh ALL THE TIME. Anyways, so Caroline was there for 90 minutes, then later that day she had her 15 month well being appointment. So somewhere in that time, she picked up the dreaded, but welcomed STOMACH FLU!
Oye veh, what a mess. Tuesday night, Caroline started a cough/cry. I just ignored it, because I know her pain cries vs. her non pain cries. Web gets up to check on her and he goes, "um you better come in here." She had thrown up all over the place, lunch and dinner. TMI, I know. We stayed up with her most of the night while she was sick. Of course, this had never happened to us before so we got out the computer, checked our doctors website and realized we had NO pedialyte, NO Gatorade, nothing bland at all. So the next morning, Web had to clear the drive and head to Wal Mart. Poor guy. He got stuck in the middle of the street and we had to call the Nichols Hills Fire Department to help him! Long story short, the stomach flu hit our whole house. Just like dominos. I think we are all on the up and up though!
Like I said, I know this is TMI. But it just felt good this week to be "normal". We didn't have to deal with a fracture, a splint, Motrin, rodding, hips. We just got to be a mom and dad with a sick kid. And it just felt good!
Friday, January 28, 2011
Is it February yet?!?!
SERIOUSLY! This has been the longest month EVER. Sorry it's been so long since I last posted, but Debbie Downer AND Negative Nancy have been around and I tried to spare you all! This month has sucked. Besides the school issue, plumbing issues (I will spare you details, but let's just say I am bff with the c0-owner of Plumb Crazy Plumbers, he lived at my house for 2 days straight), plus Caroline's 2 week cast lasted 3 weeks. Apparently as you get older your bones take longer to heal. Who knew once she turned 1, we would need 3 weeks immobilization? It's kind of like when you turn 35 and all of a sudden your egg count decreases, or when you turn 50 and you HAVE TO have a colonoscopy. I would love to be in a room with all the medial professionals who decide which age to put with certain diagnosis'. But I digress.
So, poor Web had to take Caroline to the ortho by himself on her 2 week removal appt because I was hanging out with my new bff's. They did another x-ray and Dr. Herndon could see healing but thought as soon as they took the cast off she would start being mobile and would probably break in the same spot again. And she would be mobile. She crawls in her cast! She drags the bad leg, and crawls with her good leg and both arms. Quite impressive. She even tries to sit in it. While Web was at the appt, Dr. Herndon took an x-ray of her right hip and could see the displacement clearly. You know how you have a ball and socket in your hip? The ball fits nice and snug in your socket? Well Sweet Caroline's ball is ABOVE her socket. Nice, huh? Dr. Herndon tells Web, "well it's time to fix her hip this spring, and while we are in there, let's rod her left femur. Expect her to be in a cast for approx. 3 months". As you can imagine, Web was at a loss. He tried to ask the right questions, but let's face it; he just went to the appt. to take off a cast! Not to discuss surgery that could put her in a cast all spring and summer!
Web calls me on his way home and tells me the cast is still on, we need to do surgery in the spring. At the same time, my bff's are explaining to me that they need to cut off our water again! CALGOOONNNN!!! I lost it. I hung up with Web and just started bawling. Yes, we knew Caroline would need this surgery, but this was the last thing we expected on this day. And why 3 months? Rodding surgery should only be casted for 3-4 weeks.
I inquired with some OI parents and got an earful. "No WAY should Caroline be casted for the long". "Leave your ortho, he has no idea what he is talking about!", etc etc. Well needless to say, this made me feel like the worst parent on earth. Why would Web and I put her through this? Well, finally a mom spoke up and told us that her child who was 2 at the time, had hip and rodding surgery and was casted for 10 weeks. (doesn't 10 weeks sound better than 3 months, even though it's practically the same amount of time?!?!) And she had surgery with THE OI surgeon. THE doctor who invented the rods that are placed in some OI children. SO HA! If he had him in cast for 10 weeks then yeah, we aren't that bad of parents. I emailed that mom individually and thanked her for being so nice and understanding and giving advice. I know the other parents were just going by there experience, but why so mean?
We went back to Dr. Herndon with questions in hand! And we are happy to say Caroline's cast came off this time! 3 weeks=long time.
The reason the cast is on for so long is because of the hip. He wants to do this one time and he has to keep her immobile to make sure all the screws and wires don't slip. It's a very tough surgery especially with her bones not being as strong as non-OI children. The femur surgery is a no-brainer. She would be out of the cast in 3 weeks, but we have the fun hip to deal with!
The bad thing is our ortho, who we absolutely adore. Love him. He does not use the latest and greatest telescope rods. He uses the old school rush rods. He doesn't like the telescope rods. He says he has more issues with them and has to go back in and repair the rods more often than the rush rods. And many of the other ortho dr's in his practice are doing the same thing. Using rush rods over telescope. There are advantages and disadvantages to both. Needless to say we are going to get 2nd opinion. We are playing phone tag with the OI orthopedic surgeon in Omaha. Yes, we would go to do this surgery in Omaha. We would go in a heartbeat, if it's the best decision for Caroline. But does he have experience with hips? From what I understand his focus is on rodding. So, we are kind of at a stand still. Caroline's surgery in OKC is scheduled for April 4th, but we can cancel that at anytime if we choose to go to Omaha.
This parenting thing is NOT easy.
I pray every night, that Web and I will make the best decision for our daughter. Do we want her in a cast for 3 months? Hellll to the noooo. But would we rather do it now, where she won't remember down the road? YES. It will be a long spring and summer. And if anyone is in the OKC area, we would LOVE visitors. Because I might just lose my mind staying in the house for 3 months!
Tuesday, January 4, 2011
update
I wish I wasn't such a Debbie Downer. It seems that this year has not started off the way we planned. Quick update on the school: I talked to the senior pastor and I would never want Caroline at that school. He told me that he was informed that Caroline would NEVER walk and she had a short life expectancy! And I needed to check my christianity to put my child in harms way and to put other children at the day care at harm. Needless to say, words were said, emails exchanged. Once he was better educated, he said he would talk to Web and I, but he also need to talk to their "doctors". After talking to a very well informed member of the church, they don't have doctors, they have lawyers. She was also not surprised by his behavior. So, not sure what we will do for school for Caroline. We have another private school we are going to try, but if that doesn't work out then I guess we'll look into public schools. Makes me wish we had UNION in OKC.
On another sad note, poor Caroline hurt herself on Thursday, December 30th at 4:45 PM. Needless to say, the ortho office was closed for the long holiday weekend. We took her to the ER 1st thing Friday morning, and sure enough same song and dance. No, they didn't see a fracture. No shizzle. They never see a fracture. So the ER dr was advised by oncall ortho to call our ortho's office 1st thing Monday and do another x-ray. Well that's all fine and dandy, but what are we supposed to do about the pain our daughter is obvious in? So the ER dr. attempted to splint her. And he did try, but later that night Caroline screamed out in agony again. The splint must not have worked, because Caroline was in worst pain than before. I tried to re-splint her but that didn't work out well. Poor thing. I think I traumatized her for life. I tried to straighten her leg and literally she turned cherry red and her eyes popped out of her head. I will never for as long as I live, forget that face and forget the pain I put her in.
Needless to say, we let her immobilize her leg how she wanted and we just let her be. By Saturday morning, Web and I were spent. We couldn't hold our daughter, or change her diaper without causing her pain. Longest, worst weekend ever.
Monday morning, we went to the ortho office, they took x-rays and sure enough, there was a visible fracture, they put her in the one legged full body cast and we were sent home. We have 2 weeks in a cast. I am hopeful that we can still do PAM on Thursday. Once we do the PAM she will for sure start feeling better. Last time we did it, she was in a cast but it was in Omaha where they do PAM treatments all the time. They have access to put an IV in her hand, so I am sure everything will be ok. I mean we do deserve one good, positive break?
So, that was our holiday weekend. Not the best start to 2011. Hoping we can have a do over this weekend.
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