We Survived

Well now that Christmas is over I am happy to say that we made it though without a trip to the hospital. We did however go in to see Dr. Palmieri on Wednesday just to check on the lungs. She said her lungs sound good but she was very concerned with the obstructive apnea spells she continues to have, we counted at least six while she was checking her out, so she made a call into Dr. Grimmer and bullied him into seeing Arianna today. So we went in to his office this morning and he took a look at her airway with a camera down her nose, really cool, Kenna was really fascinated by it. It looks like her languial malaysia is compounding and getting worse. So he moved up her FEES study to the 8th of January. If all looks well and she doesn't have serious aspiration problems she may be in for surgery to remove some tissue in her airway and possibly her tonsils. We will just have to wait and see.

Thank you everyone for all your prayers, I truly believe that small things can create miracles. Without your support I would not be as strong. Thanks again.

Julianna

Not Again

I know, I know it has been too long since my last post, but we have been running in circles around here. So here's what's been happening. I took Arianna in for her 18 month check-up on Monday, can you believe she's that old, anyway things were great, her weight gain is good, her length is right on track with normal kids, and her head is growing well. But, her lungs were soooo gunky, Dr. Lisa said 'just humor me and let's get a chest x-ray'. And of course it looks bad real bad, she has pneumonia again, how you ask, well let's travel back to last Tuesday. We started to do some therapeutic oral feedings, and she loved it, did so well her OT and speech therapist were so proud, we only did two feedings in four days but she somehow got some in her lungs. So kiddo no more food, just tube feeds again. We now have a FEES study scheduled with her ENT in February. But back to the lungs, we got a shot of Rocefen on Monday and Tuesday and are now on Augmenten. On Tuesday we went to carido down in Orem, boy did I get lost, we were in the stadium parking lot at BYU when I should have been just west of Univ. mall, we were over 45 mins late, oh well. Dr. Day thinks things are going good and wants an echo done in two months, but she will not have to be sedated(yeah!).

On Wednesday was Kenna's ballet concert, she was so cute, but did not do much more than bounce and wiggle, it was great. We took her out for ice cream afterwards, I am glad I brought a change of clothes cause she was covered in chocolate sauce. I still have a ton of Christmas shopping to do, but I really do not want to take Arianna out in this windy weather, whatever I can do to keep her out of the hospital I will. So if there aren't that many presents under the tree and Arianna is home I am okay with that. We have to go get her Synagisis shot tomorrow morning. I don't think there has been a day this week when I didn't have some appt to keep, I am getting burned out, lets hope Santa gets me a day off for Christmas.

I will be praying for health and happiness for all of our friends this season.

Julianna

Our Family

This picture was taken on September 8th at the wedding of Scott & Jesse Snell (Matt's brother). Kenna and Arianna were flower girls, although Matt carried her down the isle. Kenna did not seem to want to smile for any of the pics, she was really tired by the time the wedding started at 5:00 p.m., kids just don't like waiting for anything, even the bride.

I am very grateful that this year is almost over, let's hope that the next one will be very quiet on the medical front. We started 2007 with a major cranial repair surgery, and the middle with many health problems and G-tube surgery. It will be nice to have a calm quiet Christmas, if that is at all possible with a four year old!

I am not sure how I could have made it though the last 18 months with out my wonderful husband, he is a wonderful dad and will do anything for his girls. He takes wonderful care of Arianna and all her needs, and every night he reads books with Kenna before we tuck her into bed. I at least get a few minutes to myself. I have enjoyed the past 11 years with him and look forward to so many more. He was my big bear to cry on after I suffered 2 miscarriages and helped me to feel like myself again. Although there are days when he makes me crazy, and I him, we can always find a way to make each other laugh and feel loved again. So, I say thank you to the love of my life, without you I would be incomplete.

I am grateful for my beautiful girls, and for the love the share with all those around them. For sharing their beautiful spirits with us. They have both taught me to have a lot more patience and respect for that which I can not control. I have learned to be both mother and healer, I would not trade a day of my nursing duties, I do enjoy the knowledge that I have gained for some day I may help others than my own children. Thank you little ones for all that you have taught me.

And thank you to all of you that love and pray for our family, your kind deeds and words do not go unnoticed, we love the extended family that this life has afforded to us.

Merry Christmas All. My the Lord bless and keep your families. We love you all.

Julianna

The Ears Have It

Well now we are fighting an ear infection, oh joy! She spiked a fever of 103 on Tuesday again, but this time we just went into the docs office. Her right ear was red and bulged, and smelled kinda yucky, so my little Kenna tells me, she likes to sniff ears like a doggy. So we are now on omnicef, yeah now we have red poop, she is feeling a bit better. She is also pushing in her lower 1 yr molars, still nothing on the top yet but she also doesn't do a lot of chewing to help bring them down. We have started working on her oral skills with a chewy tube and an oradent, she likes them most when we put a bit of toothett paste on them. Luckily she doesn't have a lot of issues that come along with teething, she is just a happy go lucky kiddo.
We got a ton of snow this morning, Kenna was outside at 7:00a.m. in her jammies, coat and snow boots while Matt was snow-blowing, she loves to walk behind him and kick the snow back onto the sidewalk, Matt just laughs. The snow blower ran out of gas and Matt couldn't get it to re-start so he was out there with a shovel, after about ten mins or so I walked over pulled the cord and the thing fired right up, it just needed as woman's gentle touch, or to cool down, who knows.
I still have not put up our Christmas tree, although I have made room for it in our tiny living room. Kenna asks me everyday if we are going to put it up, but I need Mat to get it down from the attic, maybe tomorrow......

New Pics

These are pics from the Festival, Arianna is infront of the SOFT Angle tree

and a sleepy little girl after the Festival at her Noni's house.

We spent Friday at the festival of trees, I took pics of the tree with Arianna, yes I will post them. She had a great time and was awake the whole time, she loved the music and dancing. We went to a Christmas party on Saturday, myself and my sister-in-laws were the musical entrainment, Kenna sang with us too. Arianna was smiling when she heard mommy singing. She is getting better neck control and spent a good twenty mins in her saucer, she loves the praise we give when she can right herself when she flops backwards.
Kenna was sooo happy with all the snow we got yesterday, about 10 inches. Her and Matt made a snowman in the front yard, it has chocolate for his eyes, nose, mouth and buttons. Real cute. We have still yet to put any decorations up, except for the lights on the house, maybe this week I will get something done.

Well things have been ok since we got home. Arianna is still really junky in her lungs, we have an appt to see her pedi today. I have tried using the nebulizer to help break things up but it doesn't seem to be helping much, she is on OraPed to help open her airway, it makes her pretty cranky. I increased her O2 to 3/4 liter and it has helped her not work as hard to breath, she isn't pooping out as fast now.
We are going to go to the Festival today, as long as she is feeling good. I know that there are a ton of people and germs, but I hate that we all miss out on life. I always have hand sanitizer with me and I don't let just anyone touch her.
I have had a request for new pics of the girls, and I am working on it just have patience with me I only have dial-up and it takes forever for it to down load.