Kauiai was Ab-Fab

We did it, and we survived the flights. Let me tell you flying with a kid on oxygen and in a wheelchair is no easy feat. But we had great help and admiration from many flight attendants and many other passengers. Arianna did so well on all four flights, never once complaining. I however was a bit cramped sitting in the middle seat, Arna got the window because she was in a car seat and for safety and evac purposes that was the best place.
The island was beautiful and warm, so lush and green. Our hotel room had a great view of the ocean and you could hear the waves crashing! The beaches are pristine and the water was warm enough that Arna took a dip. We mostly played in the pool so that we could keep the water out of her nose, how do you explain to docs that your kid aspirated sea water! Kenna is a natural in the water, I had a local tell me she would be great on a surf-broad, she wasn't to keen on the idea yet. We had a Monk Seal that liked to hang out on the same beach with us sunning himself, Kenna loved to just watch him.
We took a hike with Arna in a pack on Matt's back, she laughed to whole 2 1/2 miles. It was on the cliff coast line, the only way to get to ship-wreck beach and the great shell hunting. Kenna only complained on the hike back, she had got her shells and wanted to be back in the car.
We got Kenna to snorkel at Lydgate park, very calm waters due to the man made wave break. We ate fabulous local food, my fav was the Kahlua Pork.
Kenna found a coconut and we tried to bring it home, but it had bugs and the USDA would not let us take it, that's ok Kenna still thought it was cool to have one for a little while.
We did some shopping and a lot of relaxing and enjoying the company of our family. I say a huge thank you to Marilyn, this truly was the greatest gift for us all. to be able to celebrate the birthdays of two very special women in our lives. Thanks for the trip, we will never forget!

I have many pics and videos to share, and will do as soon as my computer gets fixed.

Upon arriving home I learned that sweet Lily had gone to be with Jesus and her big sister Charlotte on Sunday morning. Our hearts are broken, and she will be missed. Thank you sweet girl for sharing your sweet spirit with us all. Please pray for comfort and peace for her parents and family.

I am lame with this

I saw today that I have not updated since Nov, and that is just wrong. So much goes on and I just don't want to miss it, and I forget that I should share it with you all.

So in December, Arianna had surgery on her eye, they found an impacted sac connected to her tear duct system that could have lead to serious and unknown infections. The new duct tubes are working well, and her eye is looking great. She did get a small infection and over it quickly with meds.
We had a wonderful and quiet Christmas, our first in this house. It was great to decorate, hated putting it all away.
The new year has been good, no illnesses!!! I was, however, beginning to get concerned with Arianna's weight, she is really thin and long and bones started to poke out. After a visit with our ped we found that she is under weight by about 3 lbs( she weighs 32.9lbs). And with a full blood panel we found that she is anemic, has low blood glucose, low vitamin D and her calcium is low. Her ped is working with nutrition to get all the right stuff into her. I have been slowly increasing the amount of food she gets, its hard when she doesn't tolerate high volumes of fluid in her tummy.
She is burning allot more calories everyday, she is crawling like a pro. I am have a hard time keeping up with her. I will try to catch it on video and post it soon. She has also learned that you can stand up in a crib, not good for me. I am now totally scared that she is going to fall out on her head. The bed we would like to get for her is still under development, and we don't know when it will be available. My neighbor has offered to help Matt design and build something that will suit her needs and grow with her.

In just two weeks we will be heading to Kauai as a family. My MIL is taking hers boys and their families to the island to celebrate her 60th b-day and her mothers 91st b-day. This is going to be fun. Kenna has been talking about this trip for two years, and as the departure date approaches she is getting more and more excited, she can't wait to see the ocean.
I on the other hand am getting a bit nervous, not because I am flying, I am good with that. It is the traveling with Arianna that has got me on edge. All of the things that must be packed and all of the new rules for flying with liquids and such. I spent an hour on the phone with the airline and with TSA just to get all the info for her meds and food worked out, and the proper documentation for her oxygen concentrator. i have had to have both her ped and pulmo docs with letters stating why she must have all of her stuff, not that TSA will really read it, they just want you to have it. I will have to bring all her food in my carry on luggage to prevent it from freezing. Our flight goes from SLC to LAX with an 1 1/2 hour layover, and then five hours to Lehuie. I hope I can keep the kids happy and entertained.
I will post as many pics as I can of our wonderful vacation!

Hope all of our friends are doing well. Please know that I do think of you all often.

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.