Update to all the med junk

So Arnas CT went well, she was given Versed only, she just looked like she was in la-la land, and just came out if it quickly. The ENT told us that she has a common defect in her middle ear, can't remember the name of it, but it will cause degenerative hearing loss, some day she will loose her hearing. But we can go ahead with hearing aids, I just hope she will leave them on.

Over the weekend Arna starts to feel sick, coughing allot and then crying afterwards. I took her to the doc on Monday and her Chest x-ray looks terrible. Her right lung is full of junk, but she was still moving air and saturating at 99. We got her a shot of antibiotics, which hurt like the dickens, and put her on oral steroids to open up the airways. She was been such a trooper and seemed to be feeling well, we went out for a walk yesterday and enjoyed the warm sunshine. Last night just after I got in to bed she started to de-sat in her sleep, down to 80, so I turned up the O2 and repositioned her on a Boopy to prop her up a bit, and she was doing better so I turned the O2 back down to normal and she stayed that way all night. This morning she is rearing to go again, and wants me to hold her so she can give me hugs and kisses, which she is now figuring out how to bite my lip(thanx Boofus). I left her in bed though, 6:00 is too early for her to be awake, she needs her beauty sleep. I am hoping she gets over this lung junk quickly, I really don't want to spend any time in the hospital.

A side note for those of you that don't know, I added a link for Jaxson's Blankies. If you or someone you know has a kiddo in needed of good cuddle blankie, please request one there. Lacey started it and has recruited my help and making blankies for sick kiddos. Most of them are out of state and Lacey just mails them off, but we did get to hand deliver one to Ben. He and his mom were in town visiting family when he got sick and admitted to PCMC. We were excited to give the blankie to his mom and then meet Ben as well. Please help in prayers to get them back home to NH, they miss the rest of their family.
Please visit the link sometime to see all the kiddos that have received a blankie, and maybe even make a donation to help us make more.

I will try to keep up on Arnas lungs the best I can. My parents are loaning me a computer to have at home since Matt needs mine allot lately.

Simple Joys

So I took the girls to the mall on Friday evening, I just had to get out of the house. Kenna thought it would be a fun idea to go ride on the carousel, i agreed. So that was the first thing she did upon arriving there, Arianna is a little to wiggly to ride with me holding her. Kenna was all smiles and it made me remember just why I love being a mom. I thought back to when I was young and all the things I wanted to do when I was a 'grown-up'. A doctor perhaps, maybe even a lawyer, or travel the world and discover some part of ancient history that could change the future. But that all seems to trivial to what I do today. I am a healer, a kiss can do wonders for a bump on the knee. I stand up for and fight for those that can not do it for themselves. And I travel the world in my own home, the couch can become many things, like a boat, a fortress, even an airplane. It can take us to far off lands to fight Dragons and rescue those in distress. I have become a horse that carries my young princess to find Prince Charming. I have found the Tickle Monster, it lives in my hands!!!
For all that my little wonderful children have helped me to become, I can not begin to express the joy that fills my heart. I will forever be taught by them, and I can only hope that in some small way I can teach them the simple joys that do not come by way of money and gifts. That true joy and happiness comes from within, from what we do for each other out of love.
Although I have my days when it seems Kenna is trying to push me over the edge of control. I have to remind myself that she is also trying her own wings, seeing just how high she can soar without my hands holding on to hers. She has had to grow up very quickly, and alot of it has been done on her own, since I have to spend alot of time doing some much for Arianna. I hope she can see that I love her very much, and what I do for both of them is very selfless, that she will take that in to her life and character.

Now that is my deep and profound thoughts for the day! ;)

So here is the most recent medical stuff that has been going on with Miss Arianna, she really has been a good girl this year.
She went in on Feb 19th for the 4 gland Botox, ABR hearing test, ECHO, and tear duct probing.
The botox is now just starting to work, and she has less spit to deal with. Her hearing has not improved to a level that the docs like so we will be trying hearing aides(and a big hugs of love goes to Erin and Zar, they gave us Charlotte's ears). Her tear drainage system is not even there in her left eye, and they opened up the right one.
We went in to see Cardio on March 2nd, and her doc feels that her ECHO looked good and to just keep the course we are on.
She also got her Synagsis shot that day, two pokes at the same time to make it pass quicker, she screamed in her own way, went blue in the face.
Next week we go back to the eye doctor and go in on the 13th for a CT scan to see if her brain can even process the input from the hearing aides.
Then the next week it's back to ENT clinic for more check-up's.
I can't say that I love all the traveling to the hospital, I just wish we could do it all in one day, it never works out that way.
I am truly grateful that Arianna has been healthy, we haven't even had to go in to her Peds office for anything more than a pimple like bump on her skull incision line, which turned out being psuedomones(sp), something you get from being in a hot tub, who knows how it came to be here but Kenna has some bumps to. We got that under control quickly.

I am also getting things ready for Kenna to start Kindergarten, that came upon me fast, I can't believe that she is 5 1/2, time flies to quickly.
Kenna and I have started "working-out" together, just a couple of goofballs dancing around the room, but we have fun doing it. And I have been helping Lacey with Jaxson's Blankies for Babes, I like to crochet and it is nice to do something for others.

So that's it in a nut shell, I will try to keep up in between all my other stuff.

The "Greatest" Grandma

This is about a month late but I wanted to share a very happy birthday with everyone. Matt's Grandma is just about the most wonderful woman in the world. She just celebrated her 89th year, and shows no signs of slowing down. She loves to play with all of her 30 some odd great-grand children. Kenna loves to visit her apartment, she has cool toys and always gets down to the floor to play with the kids. Arianna finds her way to kicking over the plants, but Grandma Ray just laughs and says, 'if she doesn't kill them, I probably will'.

I took this picture one evening when Grandma Ray and Grammy stopped by to say hi to the kids. It shows just how young at heart Grandma is.

Gotta Love a Gal with Spirit!!!

Happy Aniversary

Matt and I celebrated our 12 year aniversary on the 26th. I am now just getting around to posting cause I have been sick as a dog. We plan to do something to celebrate when we are all over this cold.

So, wow, I really can't believe how quickly the years have passed. I married a wonderful man, and he became a great father. I can only hope he feels the same.

Love ya tons husband!!!

Angel Charlotte

Our sweet friend Charlotte left us to be with the angels this morning. She got sick with RSV and it took her quickly. She was suround by her family when she passed, she will be greatly missed.

We came to know her and her wonderful parents through SOFT, Charlotte had a rare genetic disorder, Trisomy 16. She would have celebrated her fourth birthday in June. Arianna and Charlotte loved to play together, and pull eachothers oxygen out of their noses, who could really get upset when they were playing.

Our hearts are so very broken, but we know that she is now soaring with the angels, free of the limitations of her body.

Please pray for her family.

where do I sit and play mom?

So Arianna, with help from Kenna, has broken her swing. Granted the swing was not built to hold a 30 lb 2 year old, but I had hoped it would last a bit longer. Kenna was helping it to move, gave it one big shove too many and well now Arianna can lay back and touch the floor with her head. She is now hanging out in her wheelchair, cause I have nothing else to put her in. I think she is tolerating it for now. I just wish there were more seating options for her, the swing kept her entertain with its lights and music, they just don't make them for kids. Matt says he will start working on a design and then build one that will work for years to come, and use parts of the old swing, ie lights and music, he just can't get to it fast enough for me.
Question? Why is it that my kids will not nap at the same time? If Kenna just so happens to take a nap, which is rare, why won't Arianna take one too, or at least one longer than 1/2 hour. I would sure love to get in on the nap train once in a while.