Sisters!

Megan is 9 and Raegan is 16 months old at the time of these pictures!

Megan's video

My sister Raegan keeps trying to get Mommy's attention! But aren't I the cutest little angel?! My Mommy says it is a three way tie between Me, Hannah and Raegan as to who the most beautiful girl in the world is to her......but I know it's me!

Fun with Megan

So cute with her new do!

Painted her little bitty teenie weenie toes to match her outfit!

Megan was very happy to have her picture taken

My sweet little angel Megan. 9 years old!

Megan 101

Megan and Easton use the same kind of pump, but they recieve different formulas. The pumps have a handy backpack they fit into with the bag of food that makes it very easy to travel with them. They are also rechargable with a battery that lasts all day.

This is the food Megan is fed. She is fed by ng tube all day, in small feeds. She can not handle big feeds, it makes her throw up everytime. She switched to this food just a few months ago due to many feeding issues she struggles with. She seems to be doing a little better on this.

Raegan 15 months

Raegan having a size comparison to her sister Hannah's barbie doll, she is so cute!

Megan and Easton's wheelchairs

A good look at their wheelchair with removable chair that can be transfered to a stroller base. This is their Hi-Lo base that can go from the floor level (almost) to a little over waist high level on me. The bases are very handy in this way and make getting to my babies much easier. There is also a backpack on the back that I love because it holds all of their individual needed items!

So proud!

Raegan worked really hard in vision therapy today and she even transferred a ball from one hand to the next (with a little help)! She tracked the ball up and down back and forth and all around! Then she got to watch her hand holding the ball. She loved to feel what she had been seeing! She was as proud as punch with herself today!

Favorite toys of my babies.

These are some of the different balls they love to look at and hold. The small pink and blue ones on the bottom are the same, they are reversible. The babies aren't quite sure about how they feel about them when I put them on their hands and feet! The big ball on the top left corner is a favorite also because it is easy for them to get their little fingers in and hold and big enough so that both of their hands can go on it at the same time.

The tangled toys change shape quite easily and are very easy to put into my children's hands, plus they love the soft squishy texture and the little nubs that tickle them! The water weenies are fun to watch them try to hold. Raegan really loves the sound of the slinky and the colors on her fuzzy caterpillar.

They really like these balls that light up and flash different colors

Raegan's favorite toys

Raegan likes colorful toys. She like them squishy and with different textures. Raegan loves to look at herself in the mirror! I put lots of toys around her to see if she starts to choose the ones she wants to play with, or if she just plays with them by chance of where I put them. So far she really loves her big orange ball the best!

Raegan's new world

Raegan is doing so well since she can wear her glasses now without them bothering her! She is finding and tracking and reaching and Smiling! She inspires me so much to try harder everyday. I can see her opening up to her new world of sight without distractions. I am just so in love with my little RayRay of sunshine!

Megan

Curling Megan's little ponytails, getting her even MORE beautiful for her day! Megan is 9 years old in this picture :)

Raegan

Raegan is sitting so well with her splints! Raegan is 15 months in this picture.

Haircut stage 3

To Hawk! Look at that cute smile, you can tell where the missing tooth is by the way his lip goes in on that side, it is hillarious when he starts sucking his lip in!

Haircut stage 2

To hawk or not to hawk, that is the question!

Haircut stage 1

Easton taking a bath getting all scrubbed up for his haircut! He just LOVES his baths.

Raegan with her therapy ball

Watch as Raegan looks for and then REACHES for her toy! Such a big deal for little RayRay!

Raegan playing in her ladybug chair

Look how hard she works holding up her head and exploring with her hands!

Tears

I find I am having a hard time not crying today. It is a melancholy day for me I suppose. Our Rhizokids who have passed on are on my mind today. Their lives here were so short, and yet so powerful. I can only imagine how many lives have been changed because of these sweet angels. I used to ask myself, and God, why all of the time. I don't do it much anymore, but it is on my long long list of questions I am going to ask God when I see him again. Sweet Fred, who I never had the priveledge to know, passed away less than a month ago, I feel so much sadness for his mother. We are all so far apart, I wish the we lived closer. If wishes were fishes we never go hungry right? I think that is how the saying goes anyway.
Well as I write this, Raegan is starting to cry. I would love to write more now but I guess I will have to finish this thought later, Time to go play with RayRay and enjoy my sweet little babies while I can.

The stuff nightmares are made of

I woke up with the sound of Raegan crying around 4:am, her ususal night feeding time. I stumbled into the kitchen to warm up a bottle for her when I heard Megan start crying. Usually, when Megan starts crying in the middle of the night it is either because she is hungry or she wants her tummy rubbed. I knew she wasn't hungry so I decided Raegan could whine for just a minute more so I could rub Megan's tummy. The tummy rubbing wasn't seeming to help her though she just started crying harder and almost screaming now. It was dark in the room since I hadn't turned on any lights because Easton was still sleeping. But I noticed on Megan what looked like a crusty eye, like maybe an eye booger or something so I touched her eye to get it off and her whole eye and around it was covered with ants! I almost screamed and freaked out. I cleaned her up really really good and moved her into bed with me. I've been keeping a dilligent eye out for any ants around her for the past 15 or 20 minutes, but I see no strays or survivors of my rampage. I made it a point to smoosh everyone I could find. I love all of God's creatures big and small, but NOT on my baby's eyes!!
 So needless to say we are calling an exterminator in the morning. I've been dealing with these darn ants ever since I moved to this sand pit that this house is on, but NEVER have I had to deal with them bothering my little angels. What the heck?? Now, when I close my eyes I see the ants swarming out of her eye and it just makes my skin crawl! Can you imagine how terrible it would be to have ants crawling all over your eye and not be able to do a thing about it but cry!! My poor baby couldn't even get her hand up to her face to get them out or itch or anything, I'm sure it was driving her crazy!
I try my best to be there for anything and everything my children need, I am their hands, feet, eyes and mouth. I can not believe I let this happen. I feel so horrible. Usually Megan sleeps with me, but she has been so noisy lately that she has been waking Raegan up so I put her in another room that is very close to me but not WITH me. I'm so sorry this happened to you Megan. Mommy will get rid of these darn pests and you will never have to go through that again! I have declared war on the ants that dare to enter my house!!

so very grateful

Easton here, my Mommy is sleeping so now is the best time to sneak onto the computer and say a few things that have been on my mind! First, I want to tell Claire not to tell on me! I have had the best couple of weeks. I wasn't too worried about my surgery but my Mommy sure was. She tried not to let it show but I pick up on these things pretty easy. I know everybody really gave a LOT of smiles and prayers, I could feel everyone of them and it gave me the energy I needed to overcome what the doctors and my Mommy was so worried about. Don't they say the sixth time is a charm? Well, something like that!
 Everything is pretty much back to normal now, my mouth doesn't hurt near as much is all. I keep sticking my tongue through the new hole in my teeth, it feels cool. My Daddy thinks I'm funny looking when I bite my lip now cause only one tooth is biting, makes him laugh, so it makes me laugh too. I'm pretty much getting spoiled, whatever I ask for my Mommy gives me whether she really feels like it or not. For example, my Mom thinks I need to sit in my chair for a certain number of hours a day. I don't! So usually when I start to complain my Mom just says something like "you're okay, just a little longer" So I've learned if I turn up the juice on my complaining I can get her to move me whenever I want! I always give her a big smile to let her know I love her and to tell her thanks, but I feel like I am more in charge now. I guess it's cause I'm getting bigger, Mommy is letting me make more of my own decisions. I like it! So I've decided to not be so onery to her all the time, I give her lots and lots of smiles and even giggle and laugh quite often too. It is catching...whenever I smile and laugh I notice everybody around me starts to do the same thing, and that makes me very happy.
 I have also been showing Mommy how well I can get to where I want to go by myself too, as long as it isn't too far away! It is becoming a fun game we play. She puts me where she thinks I want to be and then I spend the next few minutes working as hard as I can to move so that when she comes back she has to look for me! Kind of like hide and seek Easton style. So she finds me and moves me back to where she thinks I need to be again, and it starts all over until I pass out from exhaustion. My Mommy says it is great exercise too, whatever that is I don't know but I know I like it!
 I haven't been picking on my big sister Megan as much lately either, I'm trying to be a better little brother and not such a pest. I love to kick her whenever I can get close enough to her, well I don't kick her too hard because it makes her cry, just enough to annoy her. I can't help it, I'm a boy! I have to pick on my older sister don't I? It lets her know how much I love her. Raegan, on the other hand, I can't pick on, she looks up to me so much. I love it when Mommy lays her by me. I always look at her and smile so she knows I love her too. Raegan loves to lay by me and just look at me for some reason, I guess it is because I am so darn handsome and she is just trying to take it all in. All the ladies love me! I love it when they rub my head cause they think my hair is so darn neat too, feels very good! A good head rubbing makes me smile everytime, I think everybody needs one to remind them just how AWESOME life can be! Thanks again for your smiles everybody, and keep smiling!

Seizures

Raegan had another seizure today. It lasted about 2 minutes and started in much the same way as her first one did. I was changing her diaper, she jolted and then just went blank. He arms stayed a little elevated and just kept quivering, as did her legs. She had the most horrible blank stare on her face, that was the worst to look at. It was my babies face, and yet I couldn't see my angel in there at all, just a blank stare. I wanted to scream, I wanted to cry. Raegan has the most mobility of all three of my children with RCDP. She has the greatest potential to do more with her body than her brother or sister, so to see her go through this is particularly heartbreaking. I can only hope it doesn't get worse. It seems cruel almost to me, the times these children have to suffer, the times I have to suffer because I just feel so very powerless. They are always so happy! They are always so grateful for what they have, they smile at everything they are given. I would take this away from my sweet RayRay if I could, I would suffer physically for her in a heartbeat and never think twice about it, unfortunately it doesn't work that way. I have to develop longsuffering and patience and trust. Trust that this will all be worth it, and explained to me someday. My faith sees me through everyday, but it honestly saves my life on the bad days. My prayer is for a cure to be found, but until then I will settle for my babies simply being comfortable and happy. When you think about it, who could ask for more?

Laughing Munchkin Trifecta

Everybody is doing so incredibly well these past 2 weeks. I have never seen Raegan happier or smile more than she is now! Easton is laughing and smiling and moving all over the place. He is back to blowing kisses and laughing when you blow them back. Megan is happier than ever too, she laughs so much! She has me wondering what the joke is, I hope it's not on me!
 I have made Raegan some glasses out of Bendaroos since I couldn't find anything that would really work well with her face and that she didn't complain and constantly try to take off. So I popped the lens out of her glasses and wound Bendaroos around them and she wears them all day! Her personality has changed so much and she doesn't complain nearly as much during therapy, incredible! Downside is I have to tape them to her face to get them to stay so she looks pretty silly but she doesn't seem to mind at all, the only thing she seems to care about is that she can finally see without being uncomfortably distracted. They are a good temporary fix until I can find a more permanent solution.
 Easton finds is hillarious to sqirm all over the place lately. I am not sure if he has a destination in mind or if he just enjoys the moving but it sure is fun to watch him, and even funnier when I pull him back to where he began so he can start all over again, he seems to find this very amusing.
 Megan is still spitting enough to supply a small country with enough water to keep them out of drough for at least a good year. It's just too bad I can't bottle it and sell it as some sort of "fountain of youth" thing. Megan sure gets her giggles blowing bubbles, and the bigger the better. We go through so many bibs and cloth diapers a day. But she seems to enjoy it so much, her way of playing I guess.
 Raegan in staying by herself and finding ways to entertain herself so much more lately since I fixed her glasses too. It is awesome! I can surround her with toys and she is actually making decisions now on which ones she wants and even tries to reach for them! Doing this always brings her so much joy and she rewards me with her lovely giggles and two-toothed grin. I could just melt!

 I do believe this is the longest we have gone in the winter time without anybody having the sniffles, knock on wood! It has been a great time to catch up on some much needed rest and housework. And with Raegan and Easton thinking that 1 in the morning is the ideal time to play with Mom, I can use all the catch up sleep I can get!

Easton's smiles

I have been hesitating to write this post as I am not sure what I am going to say, Easton did very well for his surgery and even better on his recovery. That is the simple part, well it seems simple anyway but it isn't. I have been dreading this surgery for months, it has been postponed twice due to Easton's health. I cried the day I made the appointment, I hated doing it, knowing it could mean the death of my child. But I have learned to do what must be done, somehow, I keep doing it. I even had my good friend Wendy there with me at the hospital in case things went bad. Best case scenario was that Easton would be out of the hospital in 2 or 3 days tops, I could live with that, I had done it 5 times before. Only once did he get so sick he was in the hospital for a week and it took me 2 months of nursing him back to health at home before he fully recovered. We opted out on doing his hernia surgery because the doctor just didn't think he stood a good enough chance of making it through the surgery. They did have a hard time intubating him, and extubating him, but other than that, he reacted and recovered much the same as a "normal" child would. The moments leading up to him being released from the hospital "early", which it wasn't really, seem very surreal to me, almost as if I was dreaming, much the same way I felt when I first had him and realized what his life might be like because of his condition. I fainted the first time I saw him, passed right out, first time anything like that had ever happened to me. I felt like that again on the way home from the hospital after this surgery, watching him sleeping, he was so beautiful at that moment, I thought I was going to faint again just from the pure beauty of the moment. I don't know why this surgery went so well when we were all planning on it not. Funny the curve balls life can throw at you sometimes. Just when you think you got it all figured out, Whammo! I got Easton home and he made it through the night with no problems, the next day I did pass out from pure exhaustion. I didn't realize how completely worn out I was not only physically but mentally and emotionally as well. The surgery was over, my precious son was still alive, he was home safe with me, and life was good again. I am so grateful for everybody's prayers and smiles. The support and comments I got from everybody was far more than I had ever dreamed of, it was fabulous. My faith was renewed in people, and in strangers, once again. Everybody is well once again, and life is back to normal, so to speak, my normal anyway. I am saddened by the loss of one of our precious rhizokids, Fred. He passed away the day after Easton's surgery, a sweet victory and a bitter loss all in the same week for our little group, God bless us.