Oh Boy!

What a wild ride this past month has been. Where to start? I could start with the coulda woulda shoulda's but I won't. I think we all know where that gets us. So ever onward and upward.
Megan has had a battle the last few months with bronchitis, it took her the longest time ever to get over it and she is still struggling a bit. She still needs oxygen at night, but she is fine without it during the day. She is happy as ever and smiles all the time. Since we switched her food, she has a lot less tummy problems and is spitting a lot less too. She is not gagging as much and that is a triumph!
Easton has had his battles with pneumonia. Very scary stuff for a rhizokid. He toughed it out though and is now oxygen free! Woo Hoo! He is such a fighter and does so with a smile on his face for his Momma. How can I put into words how much his smile means to me? Impossible, but if you're a momma then you understand and I won't have to.
Raegan has had her battles with ear infections, coughs, and sore throats. We had quite the setback with her eating solids through her mouth because of her not wanting to swallow, due to a sore throat. She isn't quite back on track yet, but she is eating all of her formula through her bottle without the need for supplementing at night through a tube. I am VERY happy with this, she is much prettier without a tube in her nose, and she much prefers it!
I have gotten a swing for the babies that has been so much fun for them:

They absolutely love to swing and now that they are oxygen free they can enjoy it even better, (without the tubes!) It was the best $60 investment I've ever made. Their smiling faces and their laughter is priceless.

We are now waiting for the weather to warm up a bit so that we can spend much needed time outdoors soaking up the sun (come on Vitamin D!)

Raegan has a bit of the sniffles (darn spring colds), so we are inside bound for the time while I try to help her fight this lastest irritation.

Raegan's therapy is going well and she makes improvements every day. She is getting very good at controling her head and she is also very proud of this, her huge smiles when she does it gives her away everytime. Her legs are getting straighter and she is becoming very good at batting and trying to grab object with her cute itty bitty hands. She laughs at herself sometimes and that is a priceless treasure for me also. She loves her floor gym and has a great time playing in it.

Megan is talking to me at the moment, and I'm not sure if she wants me to post what she is saying or not, so maybe I will leave that to her, I know she loves to play on the computer when I am not looking. Easton taught her and cheers her on! So be on the watch for posts from Megan and Easton as I'm sure they have plenty to say!

Megan's Struggle

I am very sick! My chest is really yucky and full of gunk. I cough A LOT. My head hurts and all I want to do is sleep, but all I can do is cry. Can you tell how sad I am? My cries can not be heard through a picture can they? My Mommy says they are so sad. I can tell they break her heart because I can see her crying too even though she tries to hide it from me. I'm on oxygen. I don't like the tubes but they help me feel better. My Mommy had to suction out my nose and throat and that makes me feel better too, but I DO NOT like it when she does it, I scream at her when I have the energy, but she keeps doing it so I'll get better. That is what she keeps telling me when she does it, my Mom says "I'm so sorry Megan" and then does it anyway! There has to be a good reason for her to hurt me because I know she hates it, I can see it on her face, but I hate it more. I have to admit I can breath much better when she is done though, but don't tell her that.

So after days and days of this stuff I am beginning to feel better. I'm still on oxygen but I've found my smile!

I'm not crying so much. I'm still coughing and gagging quite a bit, I know how much it begins to grate on my Mommies nerves, it is a horrible sound to have to hear ALL DAY and NIGHT! How much worse is it for me? I have to hear it while I'm doing it and it hurts the whole time, I hate coughing. Mommy spent a lot of time with the suction machine and me. It is a love hate relationship we have with my suctioning machine, but we both know it is one of the reasons I am getting better and I don't have to go to the hospital because we have it here and that ROCKS! I really do not like going to the hospital so my Mom does everything she can to keep me home. We have the best doctors who give us whatever we need to keep me at home too. There is no place like home after all!
My Mom has told me of all of the wonderful people who are praying for me. I am so thankful that my Heavenly Father has given me such wonderful caring people in my life. I benefit from each and everyone of your prayers and wishes. Your energy is amazing and it lifts my Mommy up so that she can do what she needs to do to take care of me, and I know that it isn't easy. So thank you to each and everyone of you that have cared.
My oxygen is now turned off during the day and is only minimal at night. I am not coughing or gagging much at all anymore and my Mom is getting some sleep at night again. We made it! Spring is here and I am looking forward to spending time outside, I love the sun :)

It is so nice to share

Well Megan and Easton are feeling much better. Easton still has a bit of a cough but he is all smiles. He lost a little weight with this sickness so we are on the job to fatten him back up! Megan is smiling and laughing as usual. Still drooling enough to fill up Lake Mead.....
 Raegan on the other hand is not doing so well. She was up most of the night with coughing fits. She absolutely does not like her nose being sucked out with the suction machine but she tolerates it very well. I only use the bulb syringe attachment so she really doesn't have to much to complain about. Although I did put it to my nose once to see what it felt like and it was a bit of a rush. Having the air sucked out of your nose is quite a different experience. So, I guess I am as proud of her progress as I always am! We did have a trip to Shriner's with Raegan last week that I am still needing to blog about. When I have more time to sit and type I will, but for now Raegan is very demanding. A bit like her sister Hannah when she gets sick!

Fight!

We are in a battle to beat the respitory illnesses! Megan started the fight with some badmouthed germ, always dissin her and puttin her down. She fought diligently for the whole day but was worn out and that nasty little bug got the best of her. Easton decided to come in for the save but got taken out as well. Poor little Raegan is just a bystander but alas, she was also attacked.
So we have a chorus of coughs and a trio of drippy noses to contend with now. Yo, you'd better watch out you nasty bugs with your bad attitudes and your bullying, my trifecta are superheros, with awesome, kick your butt superpowers, they just take after the Yankees and prefer to come from behind! Meanwhile I'll just keep the suction machine on my hip! I'm pretty bad too ya know! I liken my self to Laura Croft. hahahaha, Oh, that one brought me to tears, goodness!
Thank You for all your well wishes and concern and prayers. They are very powerful and make all the difference to the world to me and my little munchkins. Love ya! xoxo

Megan's woes

Megan gave me a bit of a scare when she decided to get sick yesterday. Not much if your child doesn't have immune problems but a big deal if they do. I know when Megan is really not feeling well because she won't smile. Despite my best efforst to eek a smile out of her it just won't happen if she is feeling sick. So needless to say she spent a lot of time in the tub yesterday with hydro-steam therapy, it always seems to do the trick. And so it is the case this time. She is not completely out of the woods yet but she is smiling and that tells me she is on the upward mend! Megan is back in the tub today for some more therapy in hopes that we have "nipped this in the bud" as good ol Don Knotts would have said it.

Acceptance

I am finding there are many stages to acceptance. Accepting what my life is at this moment seems to come and go also. I am also finding that I go through the many stages of acceptance with my children many times over. With each new thing they face I go through the stages again. Even when nothing dramatic happens I go through the stages. I have been struggling with sadness the past few days. Just about anything and everything brings me to tears. My mind has been weighing heavily on the losses our little rhizokids group have suffered in just the past year. I have only been involved in this group for the past 2 years. It took me 7 years to start seriously looking. I was paralyzed by fear, one of the stages of acceptance. With each loss I look at my own three little RCDP children and I think about when it will be my turn. If it wasn't such a selfish thought I would so wish that I would be taken before my children just because I have felt the fringes of death with them, I am afraid of the pain and suffering it will bring. So I cling tighter to them at times, and I bury myself in housework at times, I lose myself in a movie or story sometimes. But it seems lately it is getting harder and harder. I am trying to stop running from my demons, but this is one I do not want to face. No parent should have to bury their child! It is unnatural. There are days when my anticipated grief really does get the better of me. I know what to say to myself, I've heard it all before. Live for the day, you never know what the future brings......yada yada. Not to dismiss these saying as naught, because I know that they are completely true. But there are days, when knowing your children will die before you if all goes right, when sadness just gets the best of me and I give in to it's dark embrace. I am thinking of making an "in memory" video to try and give me some focus on this scary subject. There are days, quite a lot lately, when I feel like I am on a rollercoaster of ups and downs all the while waiting for the ride to be destroyed, knowing it could happen at any moment. I am trying really hard to learn to live in the present. In the now, as the book I am reading says. Life is a very interesting journey is it not?

A+ grade from the dentist!

Easton was all smiles when the dentist gave him the thumbs up on his surgery checkup. No more swollen, painful or bleeding gums! He is starting to handle his teeth brushing a lot better now too now that it doesn't hurt so much. After canceling 2 times for is much needed tooth surgery, he is a much happier munchkin now that it is finally done!