Crazy legs!

Raegan here! You wouldn't believe how wonderful my legs are doing. I showed my Mommy how strong I am by standing up with my legs many times today! I laughed every time I did it because it felt so funny. My Mommy just squealed and giggled and kept yelling at the family to LOOK! so they did and they all clapped for me and it made me laugh even more.
My tummy is feeling much better, my Mommy switched my food one last time and she found the stuff I really like. No gagging for me anymore, (I think).
I had a wonderful time with Christmas. I got to talk to a big fat man all dressed in red the other night too, he was quite jolly and his belly kept jiggling. He smelled like cookies too, I just loved him, I hope he comes to visit us again soon.
I had fun playing with the noisy shiny stuff my brothers and sisters kept ripping off boxes and stuff that they got from under the sparkly tree. And to think they were just going to throw it away!

breathing difficulties

Yup, still on oxygen. I'm trying my hardest to get better but it is really hard. I am tired, but I keep showing my smiles so my family knows I am doing okay and not to worry. Mommy doesn't think I can hear her crying at night but I can and I know why even though I can't say, so I smile to tell her I'm okay.
 My parents have been able to turn my oxygen down though so I know sooner than later I'll be all the way!
I am not having to be suctioned out as much but I am still keeping my Mommy up at night, I just have so much snot in my nose I can't help it! I know we will both be happy when this is over, I can't wait for spring!
I had a wonderful Christmas. My favorite thing this year was looking at the Christmas lights. They make me laugh, the way they sparkle and shine is so cool, I wonder if the big people know this? They don't seem to stop and have time to really look at things it seems. People move way to fast, they need to learn from me and enjoy the moment! Get fascinated by Christmas lights!

Megan's tummy time

Well, since my Mommy switched my food I am doing much better. My tummy doesn't hurt as much and I don't have to yell at my Daddy all the time to come and make it feel better. I don't feel like throwing up either so I am happy. I'm smiling all the time so that my family knows I am happy too. Sometimes I just start laughing just to keep them thinking.
I had a wonderful time for my birthday. My sister Hannah is jealous because I am older than her. hahaha. Daddy fed me some yummy chocolate cake with coconut frosting, I wanted more but they wouldn't listen, geesh!
My babysitter Suzanne bought me a really cute and comfy outfit that my Mommy let me wear all day, I looked very pretty. I got to watch whatever I wanted on TV, so it was Boomerang all the way baby!
My Mommy let me spend a LONG time in the tub too, I loved it, I still didn't want to get out but she said I was pruning up way to much and she didn't want it to hurt, whatever, I just love the water, I think I am a mermaid and I like to flip my "tail" around in the water and splash and giggle and float. Pure happiness :)
I want to thank all of my friends who wished me a happy birthday, my Mommy read me all of your nice wishes and it made me feel very loved. Hugs and kisses to you all.

Tooths!!

Well I finally know what has been bugging me so much these past few weeks. Mommy got really excited when she seen it, said I was getting to be a real "Big Girl". I know it made me chomp on my fist and thumb something terrible so I am glad it has finally "cut through" as Momma says. She says this is only the first of many, are you kidding me?? Well I am going to have a fun time figuring out what the heck I am supposed to do with these hard white things. That should be fun!

Learning to surrender

I am tired. Trying to maintain a normal life while chronically sleep deprived is an impossible task. I hope my kids can forgive me and know that I did the best I could. My three kids that do not have RCDP are the ones I am talking about. They get overlooked a lot, They know when the babies are sick that they are the top priority but it doesn't make it any easier for them. They are good kids, kind, caring and empathetic. I know we owe this to our sweet angels, they have taught us so much. Including how to survive with no sleep! Why do colds always get worse at night. I think I need to change up my sleep schedule and take on a more vampiric approach. Sleep during the day that is, not drink people's blood. My mind can go strange places, I aplologize if it offends, hahaha. The constant hum of the oxygen concentrator becomes a hypnotic sound, always there, reminding me my little Easton is struggling. Like I need reminding, his constant coughing and suffering hurt my heart, I don't know how else to describe it. I can physically feel pain at the sight of his suffering, pulling at my gut and heart so much it hurts. I am learning to surrender. Surrender to my life and my situation at this moment. It isn't easy. I want to fight it, but it is a waste of energy. So I practice surrender, every chance I get, sometimes I can almost see it, taste it. I know it is good so why do I fight it, am I comfortable in my pain, or am I just tired? I surrender. I cry. It hurts so much to see a child suffer, to feel so powerless. To pray, to scream. I surrender. Thy will be done Lord.

One of our sweet RCDP angels, Noah, has passed away. My heart is heavy. His passing makes me want to cling even tighter to my own little ones. Having these children in my life is glorious. My life before, I did not know of them, so I could live without. But now, after having been given such a wonderful and perfect gift, if only for a little while, is priceless. But when they are taken from me, if only in the eternal aspect of things for a little while, it still seems cruel somehow. To have to find a way to live without their smiles, laughter, and even their sicknesses. When one of our angels earns their wings so to speak, it makes me appreciate even more the time I have with these precious children. If I seem to be complaining about being tired, well I am. Things are what they are and I feel a variety of emotions, I acknowledge them all but try not to let them overtake me. But in times of loss, it is hard. My thoughts and prayers are with Noah's family. I pray that God will give them peace.

Easton's on oxygen...

My Mommy and Daddy had to put me on oxygen today. When I sleep they say my breathing isn't as good, whatever, I don't like it. stupid tubes, tapes, YUCK! I guess I will just have to get better so they will take these things off of me. I'm glad my Mommy and Daddy have all of the stuff at my house they need to take care of me and not take me to the hospital unless they "have to". I am so much more comfy here. I am getting really sick of my Mommy constantly sticking this tube up my nose and sucking out my snot. It feels weird! My sister Megan seems to be gettting better already and Raegan has been getting better since yesterday. It's my turn now so I'll try my best! My Daddy says I'm really tough so I know I can do it. Remember my parents in your prayers though!

Sickness...bah humbug!

Well the muchkin trifecta have been pretty sick this week. Lots of runny noses, coughing, gagging and suctioning going on. Their spirits have been awesome though, even through all the yucky these angels still find a reason to smile. It teaches me so much not to mention it just melts my heart. Cold are always the worst at night so I haven't been getting much sleep. I am grateful for the suction machine, and I will be even more grateful when I don't have to use it! If I never hear a cough again it will be too soon. I try to find the good in everything, I can find no good in a cough, no matter how hard I try, I hate them.
Raegan got her splints readjusted today. Her legs are getting straighter! She is being so patient with us as we try to figure out the best way to help her little body. I am amazed by her strength, and her humor. While the doctor was putting on her splints she complained, but when the doctor asked if she forgave him, she smiled. I simply love her.
I am looking forward to Megan's 9th birthday! I can hardly believe it has been 9 years. My little Megan, how she has stolen my heart. She simply lights up my life, she has brought me so much, I can not even begin to put it into words. She has opened my eyes to a whole new world, a whole new way of thinking. I am honored and truly blessed to be her Mother. I am looking forward to the next 9 years!

Trouble in Threes

They are like dominoes, when one goes down it sets off the other two. At least that is how things have been going since last night. Raegan's tummy was giving her some problems last night and she didn't want to settle down. Finally, around 10:30 she fell asleep. Easton starts having problems with his breathing around 10:31 (no kidding)! His runny nose keeps gagging him and making him throw up. Nice huh? Poor little guy. After an hour or so, I lost track of time, Easton fell asleep. Raegan must have known I had a free minute because she decided to wake up. Got her back to sleep again and Megan feels left out so she decided to throw up also, why let them have all of the fun? So around 6am, when they have all decided to stop teasing Mom with their tag team efforts, I fall asleep. Just enough sleep to keep me from dying, but not near enough to keep me from going insane! I know there will come a time when my babies won't need me anymore and that is what keeps me going. Knowing one day I won't hear their cries, they won't need me to stay awake and make them comfortable. They won't be here for me to hold and love, that is what keeps me awake, that is what keeps me going. Well that and the fact that they are so darn cute :)

Poor Megan

My tummy still hurts, a lot! I moaned and whinned all night long because I just don't feel good. My Mommy is really worried about me, she kept rubbing my tummy but it just doesn't help anymore. My new food hasn't come yet, I don't understand what the holdup is! I hope it comes today, and I hope it works! I'm not smiling or laughing and my Mommy knows I'm serious. Tummy aches are the worst! Please say some prayers for me and for my Mommy and the doctors that they will be able to figure this out for me. Thank You very much and I love you!

Raegan

I am doing so good with my new splints. Mary, my therapist, said I was doing so good in them she just couldn't believe it! She said they give me stability in my spine, whatever that means, I just laugh at her. I wore them all through my therapy session and did much better with sitting on the ball than I ever have! So I smiled while I was sitting on my yellow ball, I have not done that before, I am happy :)

Megan

My tummy is still not better. I have been so close to throwing up today but my Mommy keeps turning my food on and off to try to keep me from losing the food I need so much. I don't know why my stomach acts up so much, I really don't like it. My Mommy is worried because I have lost some weight. I don't have as much energy either so I am not laughing as much. It makes my Mommy sad when I don't laugh. I want to make her feel better but she needs to make me feel better first. She called the doctor for me and got my formula changed to something called Elecare. My friends Jordyn and Abbie are on it and their Mommies say it works really good for them. I am glad my Mommy found this support group, I think it helps her take much better care of me. She is much happier, which means so am I! I sure hope this new food takes care of my tummy hurts. It makes me cry and cry. Such sad heartbreaking cries my Mommy says, but I can't help it. I like it when my Mommy rubs my tummy though, it makes it feel so much better and I always give her a smile when she does. I'll let you know in the next few days if the new food is working or not! fingers crossed :)

Easton

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Vickie

Time for the insomnia to set in. Easton is having his surgery on the 20th. Well that is when it is scheduled anyway, rescheduled from November because he had a cold. I tend to worry. Not that it can add an inch to my height I know, but I do it anyway. I know that every surgery could be Easton's last. I try not to think negatively, but I feel I have to prepare myself. I wake up in the nights leading up to his surgery just to watch him breath. To hear him breath, to see his chest move up and down. I sleep with him in my bed so that I can reach out and feel his foot, his hand, his leg. Feel the warmth of him and know that his heart is still beating. I take nothing for granted. Every smile means the world to me. I wish I could bottle up his smiles and his laughter. They light up my life like a rainbow straight from heaven. I don't know how I will ever live without them, without him, without my Easton. It is so painful to even think about, and yet I worry. I beg God, like a little child, to have my way. I pound my fists and kick my legs and scream, and a small voice whispers...Thy will be done Lord. Peace comes over me because I know His way is best. Yet, before the surgery date has come I will have many more arguments with God, trying to convince Him that my will be done, just for a little while longer. And so I worry...Cleaning his teeth, what a big deal right? Why should it have to be such a problem. My poor little guy, I would take your place if I could, if only for a little while, just so you wouldn't have to suffer so. I am listening to his breathing as I type, I love the rhythmic sound it has, Easton's own little snore. Such a beautiful sound. Worry has become a constant companion of mine these past few years, I imagine it gives me some sense of power, some sense of control over a situation that I honestly have very little. Besides taking care of these babies, I believe it is what I do best! I try to keep my sense of humor about me, I try to find laughter wherever I can, it saves my sanity....I think. Maybe writing all of this into this blog will help me get it all out of my head and then I can sleep..? That would be nice :)

Raegan's party pictures

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Raegan's first year!

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Raegan got her new splints!

My Mommy took me to a place called Shriner's yesterday. I like it there, I think it smells nice, and the people are really funny to me. This doctor that I have seen before, that I don't like very much, came into see me and I yelled at him. Last time I seen him he hurt my legs when he put this pink tape stuff on it. It smelled bad and he had to peel it off of my legs, but when it came off it looked just like my little legs! Anyway, he was a lot nicer this time. He put these funny looking things on my legs, they have pads over my knees because they think that will keep me from pushing out of them..they don't know me very well. So I laughed at the doctor while he was putting them on. I cried on the way home cause they were hurting my ankles so when we got home my Mommy put on pants and socks and now they don't hurt so much! My poor Mommy had to take me to get my splints while she was sick, I felt bad for her, I tried to tell her I didn't need them yet, but she wouldn't listen to me, she is so stubborn that way, I guess that is where I get it from!

Easton's new haircut

My Mommy cut my hair! I think I really like it because people seem to be rubbing it a lot more whenever they are around me. I made it as difficult for her as I could, I like playing with my Mommy like that, I laugh and laugh because I think it is so much fun. My Mommy acts like she is getting onto me but I know she is just playing because she is laughing too. My Mommy says I grow hair like crazy, I know I have A LOT more hair than my Daddy and he is jealous!

Raegan

I am on an eating roll! I am eating everything that my Mommy and Daddy will give me. I have gained some weight this week my Mommy says. I don't know how much but she says I am really starting to hurt her arm when she is holding me. I love it when my Mommy holds me! I don't think I will ever get to big for her to stop do you? Now that my tummy problems have been fixed I am a very happy little RayRay. I make everybody laugh with the silly things I do. I am starting to make talking sounds my Mom said. She is way excited about it. I have been talking forever so I don't know what she is so excitied for :) I have been trying a lot of new foods lately. Something callled pumpkin tastes really good, when Daddy puts the white stuff on he  calles "whooped cream" it is very good, makes me smack my lips, which always makes my family laugh. I like mashed tatos too, with LOTS of butter. But my favorite will have to be the really cold stuff that my sister Hannah always eats, Ice dream, or something like that.....

Easton

I have been in the best mood! I'm moving all over the place too. My Mommy had me on my mat on the floor and I decided I wanted to go look out the window, which is about 4 feet away. My Mommy left the room for a little while to go and do something with my bratty sisters and when my Daddy looked in on me I heard him hollar for my Mommy to come and look at me. I almost made it to the window, they had some stuff in the way! I made it a good 3 feet though! I keep suprising them with how strong I am, I think it is funny. My hair needs a cutting too! Tell my Mommy and Daddy! I can't wait for Christmas Eve, my big sister Megan is turning 9. I am excited for her! I love the shinny Christmas decorations too.

Megan

My tummy is not getting better, it is getting worse. I worry my Mommy because I keep throwing up. She keeps giving me baths though and I love those! Some of my spitup got in my eye and now my eye hurts a little. My Mommy and Daddy keep washing it out and it feels kinda good when they rub it too. Mommy says she is going to switch my food I eat to something else. I hope it helps me to stop throwing up, I really don't like how it makes me feel, and it wakes me up at night. I'm not eating as much either lately and I have lost a little weight, but a little on me is a LOT! I hope my Mommy and Daddy can get this figured out really soon.

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Everybody is much better!

Megan and Easton are no longer sick, what a relief! It took a few weeks but we made it through. They are happy, laughing and giggling once again.
Raegan has had her ups and downs with her tummy for the past few months, ever since she quit breastmilk. We have finally got that figured out too! She is a much happier baby, laughing by herself, playing with others better, more interested in the world outside of her. Raegan's vision is doing really good too. She is starting to reach for things, and she loves to explore with her hands, different textures are really fun.
 Megan's 9th birthday is approaching! She will be 9 on Christmas Eve, I can hardly believe it, where has all of the time gone? Sometimes I feel like we are frozen in time, not changing to much but when I look at her now, She has changed so much! Megan loves to talk! that is for sure. She always has something funny to say to, I just wish I knew what it was all of the time. I can figure out what she is trying to say most of the time though. Too cute :)
 Easton is still the handsome silent type, with that gorgeous sly smile of his, I never know what he is thinking! But he is happy and playing once again. His favorite thing to do is scooch and then have me drag him back. He laughs and laughs over this. And of course, he loves to hang upside down still. I think he thinks he is a bat or possum or something like that :)

November 11, 2010

Megan and Easton are not doing very well today. They have been sick for over a week now. They are congested. A lot of suction is what that translates to me. Thank goodness I have a suction machine, it helps keep them so much clearer. Raegan is still sneezing but no real sickness. Her transition to goat's milk is complete. I am now starting to add heavy whipping cream to give her some much needed fat. Wouldn't every girl love to have that problem! Raegan should be getting her splints from Shriner's any day now. I am excited and apprehensive at the same time. I know she won't like them, but I also know that they will be good for her in the long run, so it is a toss up. I will see how she does and let her help me decide what is best for her, that is what I have done for Megan and Easton and I will do the same for my little RayRay.