Here we come.....

So after much prompting by friends and family I out in our Make-a-Wish paperwork. I got the call on Monday that they would be more than happy to give Arianna anything she would like!!!! We are planning on Disney World, I know that with all the work in the world we would not be able to do this trip on our own. I can't tell you how happy this makes me! We will plan the trip for the spring, winter time is just tricky for us.

Arianna will be going in on the 1st of December to have her tear ducts reconstructed, should be an out patient deal. Pray she agrees with that.

We had pics of the girls done last week, they turned out so good, considering both girls seemed to get cranky five minuets into to the shoot. I will see if I can post a pic or two with my photographers permission. the libaray comps wont let me copy it to my blog.

well thats it for now!

Where has the Time gone

I noticed that I have not updated in a month, that is far too long. Being that I don't have a computer or Internet at home I don't get many chances to do so.

This is what has been going on.....Arianna is doing well on her new neb meds, her lungs look the best they have ever been in her life, amazing. Her heart is looking good. I came down with Strep last Tuesday, and was down for two days. On Thursday I felt better and thought I would do some laundry. I walked into my scrapbook room after changing the loads and stepped into squishy carpet. Our water main broke. Two days without water. Then Kenna came down with strep on Saturday and Arianna followed on Sunday.

It has been busy and crazy in our home, I wish i had more fun and exciting things to tell you all.

Please pray for Lilly our newest Trisomy family member.

Happy Brithday big girl

My sweet Kenna turned 7 yesterday, and lost tooth #7. can't believe the years have gone by so fast.

We had multiple parties. one with Matt's family last Sunday, one with her friends and cousins on Saturday, and one with my family yesterday.

Kenna asked me if we were celebrating her birthday tomorrow too? I told her that once we celebrate on your birthday date you don't get any more parties or gifts. But my sister put gum in my gear by forgetting her gift for Kenna, so I guess we will celebrating again!
I made her cake yesterday, from scratch, it was yummy. Who knew cakes didn't have to come from a store or box.

I love this kiddo very much and am so happy she is mine. She has given me so much joy, as well as thunder from her strong heart and temper. I couldn't ask for more!!

She hates them....

So Arianna got worse since my last post. Her lungs took a turn for the ugly, and she got an ear infection while on anti-biotics. Her doc gave her two rounds of Rocefen and called her pulmo doc and cardio doc. Her pulmo doc added Tobi treatments to go along with her Vest, and increased those to 3 times a day. she is going to add pulmozyne treatments when we are done with the Tobi(only a two week round). Well this kid hates to have the mask on her face and to be held still for the 1/2 hour it takes to do Tobi, she yowls like a cat the whole time, I guess the benefit is that she gets more in her lungs while she does it. Then to be put in her chair for the Vest for another 20 mins, well it makes for a long hour. I have to get up at 5:30 to start all the treatments so that she can still go to school, and yes I kept her home for two whole weeks like the docs wanted. No more fevers and she is just ready to roll, loves to be at school. Glad to say that it has all been worth it and she sounds a ton better in her lungs!

My hat and heart goes out to all you moms of CF kiddos. I still don't know how you do it!

On a side note....A wild fire is burning in our valley, thanks to the effort and hard work of our firefighters only four homes were destroyed and no one was injured, well one fire fighter was bitten by a horse he was trying to move to safety. Send your prayers to those that are continuing to fight and those that have lost. I have many friends that live in the area affected, in fact we almost bought a house there, I am glad to know that they are all safe at this time!!!

Where to start?

Well, I am without computer and Internet at home so I am forced to visit the Library and use theirs. Which today i am to hold in my chuckle, I checked my e-mail and I have somewhere in the range of 300 unread messages!!! I will get to emptying that in time, most of it is junk. I do wish I could do this at home, you can only use the computers here for 120 mins.

Now to the kids. Arianna has been in school for a week, although she took two days off for an extended holiday weekend, she has a cold. I did however send her back today, she is 8 days out from her last fever and is on anti-biotic. I must say I hate Omnicef for what it does to her tummy, she has had me up every night for at least 2 hours. First it starts with a blowout of red poo, which I must clean up and do a clothing change. Then she wants to cuddle until the gurgling in her tummy stops. I am so worn out, but I don't sleep well during the day, Matt has been great to let me get into bed early.
We went in to she her eye doctor yesterday, she has had a really gooey eye for two months and the eye drops just don't seem to be helping like they once did. So the doc wants to get us into the plastic surgeon for eyes, and have him construct her some tear ducts and drainage system for her left eye. This sucks only for the fact that we have gone a whole year without any surgery and only an overnight stay in the hospital, I was feeling blessed and lucky. I can only hope this will be and in and out kind of thing.

So now for Kenna. She will be turning 7 on the 19th. I still can't believe how fast her life has passed me by. She is so grown up, but still likes to cuddle up with me. She is doing well in school and has gotten 100% on all her spelling test so far!! she is one smart cookie. We have horses that live next door and she loves to give them treats from our garden and is learning how to care for a horse. she hopes this will lead to a horse of her own(we'll see).
She has painted a picture of humming birds at flowers to enter in her schools Reflections contest, she can't be more excited and knows 'I will win mom, my picture is the best'. She is already a winner to me.

I know there is so much more that i should update on, but I can't seem to think of anything right now. Guess there will be another installment soon.

So I met with the grandparents of Thiago, he is still in Uruguay. What a special and uplifting visit for us all. They fell in love with Arianna, and the grandpa couldn't put her down.

I feel such love and sorrow for this family, in Uruguay they are not getting the care and much needed surgery due to the fact that Thiago is not suppose to live. He has a cleft pallet and harelip that needs to be repaired, and they wont do it. I made some calls to our wonderful plastic surgeon, and they gave me the info needed so that the repair might be made by the Hershey Smile Foundation. The family will travel anywhere in S.A. so that it can be done.

I was able to send a few needed medical supplies with them, makes you feel good when you can help out, even in this small way.

I will post a pic of this cutie as soon as I have my computer back.

Pray for this family that them may get the care they need.

Looking forward to tomorrow. We are meeting a family for Uruguay, they found us online and are in town visiting family and doctors. The genetics doc that works with SOFT called me and asked if we could meet them. They have an 18 month old boy with Trisomy 13. I am hoping that they find what they need in meeting Arianna.

I will post pics of the cuties together when I can.