Musician in the making

I am so blessed to have this beautiful little girl as my daughter! :-)

Merry Christmas!

Scroll to the bottom and stop the music first.

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Gingerbread House

We decorated the gingerbread house yesterday. Ariannas brother and cousin were able to help too!

Even Robert got in on the action


Final product...pretty good for our 1st gingerbread house!

PB&J

I'm not sure about this.... Okay...I like it!

I am SO excited right now! Arianna has liked eating jelly plain for a few weeks. Then today she pointed to both jelly and peanut butter. Peanut butter being something she has never really liked. So I made a PB&J to see if she would eat it....well she is! Oh and this is a child who hates to eat bread so I'm totally shocked right now.

I'm amazed she is actually eating this since I just gave her a pediatric nutrition drink with like 325 calories.

I just had to come on here and share with ya'll.

Phone call from the pulmo

Finally I got the call from the pulmonologist. He told me they compared Arianna's chest x-rays to those in Dec. 07' and Jan 08'. He believes there is improvement from Dec 07' but not much from Jan 08', which is the time she was in the hospital with her respiratory episode.

There is clear signs of cardiomegaly, which means her heart is enlarged. Something she has always had and will have until she gets a valve placed.

There is also pulmonary edema (swelling) present, which is due to her heart function. Because she has no pulmonary valve that makes more blood go to her lungs, therefore causing the swelling. This will not go away until she has a pulmonary valve placed. He asked when her next heart surgery will be and of course I didn't like talking about that. I try not to think about those things. I told him what the cardiologists have said and he didn't say too much. Just that it will be up to the cardiologists when the surgery will be needed but we have to consider her lung function as well. If there begins to get increased pulmonary edema then we will have to start talking about surgery.

She also has hyperinflation in her lungs. He explained this to be something seen in people with asthma. This is the first concrete evidence to prove that Arianna indeed has asthma. We are to keep the albuterol inhaler for when she is sick but he does not want to put her on anything else at this time.

They also saw some high density in her right lung base which they cannot exclude the possibilty of a previous lung infection. Remember this x-ray was done with she was 100% healthy so that wasn't great news. We have always been told her right lower lobe is diseased and no one can tell us why or what is really going on there. :(

So with all of this news the doctors says Arianna is a child we really do not want to see get a chest cold/infection. He explained the need to keep her away from large crowds, sick people, and lots of hand washing. I told him how we stay at home and only go to family and friends houses that are healthy. We only take Arianna to small stores for quick trips but even that is kept to a minimum. He want to do everything we can to keep this little girl as healthy as possible. Even just the little head cold she had caused her sats to drop to 89 while sleeping. I am happy to say she did not need any oxygen with this cold, just a few puffs from her albuterol inhaler and she was good for the night.

Unfortunatly with the cold/flu/RSV season this means I can no longer do my hospital visiting. I'm really bummed about that because I've received a few calls the past week with little ones having heart surgery in the upcoming weeks. I love offering that kind of support to these families and I've been the only one visiting withing our support group. This is the hard part about running a support group when you have a child with so many illnesses. But Arianna is #1 in my life and this is what I have to do to ensure she is healthy and well. I'm hoping over the next year to get more people visiting at the hospital so it can continue year round.

Well I'm off to bed at 2:40am. Thats what happens when your daugher stays up till 1am the night before and actually sleeps in till 11:45am. It was nice sleeping in that late but not making it easy to fall asleep tonight.

Quick update

We are still trying to get over this nasty cold but I think we're almost rid of it. I, however, have lost my voice. I think Robert is liking it though. Arianna's runny nose is finally clearing up. I am so happy to say she did not need any oxygen with this cold. :) She did start coughing yesterday so I was worried how she would do while she was sleeping. The lowest her sats got was 89 so I just gave her 2 puffs of her albuterol and that helped her out.

I have still not heard from the pulmonologist and it's really beginning to piss me off. I know she is doing fine but it's been 5 weeks since her x-rays and I want to know if there is improvement on her x-rays. But since I can't talk I can't even call to complain again. I'll wait till tomorrow.

I've woke with major back pain and have been laying on the couch all day, with the exception of making Arianna some lunch. I really hate that I am going to have to deal with this for the rest of my life. :(

On a happy note....my grandmother from Oklahoma is in town for the holidays. Hopefully by tomorrow I'll be feeling better and able to go visit with her.

Just wanted to let you all know we are still here.

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Update at 6:30pm:

I received a call about 30 minutes ago from a nurse at the pulmonary clinic. She apoligized for no one getting back to me. She tried to blame the other clinic for them not having the x-ray but I began to explain to her it was HER office not the childrens clinic. Anyways she actually had the dictated report so she faxed that over to my moms work. My mom is so kindly going to pick it up for me tonight and bring it by. However, the nurse read the results over the phone.

They compared the x-ray to the previous x-ray and there is no significant changes. There is perihilar edema but no consolidation.

It's great there is no consolidation since that has always been something we've seen on her x-rays. The perihilar edema is something new to me. I'm doing some research on this and I think I might know what it is and why she has it but I'm hesitant to post about it.

The nurse is leaving a message for the doctor to call me after his clinics tomorrow which is sometime around 1pm. I'll let you all know if I hear from him.

Prayer Request

There is a new family joining the CHD community. If there is one thing we all agree on it's the power of prayer. Baby David has been diagnosed with Tetralogy of Fallot and is due in a few weeks. Please keep this family in your prayers. You can check out his blog at http://prayforbabydavid.blogspot.com/

Sick

So Thursday after our movie I started with a sore throat and immediatly started blaming myself for going out. I know...like I'm not allowed to have a life right. Anyways. Then yesterday I woke up not feeling so good and by the evening I had developed a fever. :(

Arianna started with a running nose and a fever last night and none of us got any sleep. I am just so happy Robert never catches our colds.

Arianna woke up feeling really cranky but after the Tylenol got rid of her fever she has been running around playing. She did take a nap this afternoon so that tells me she wasn't feeling all that well. She still has a runny nose but not as bad as earlier.

I've been trying to rest up and take my medication to feel better. My fever is going down. Thank GOD! I'm starting to sweat it out so hopefully by tomorrow morning I'll be back to my old self. At least I'm hoping cause my sister is having her Christmas Party at her house tomorrow night and I've been looking forward to going to that all month.

Well...back to laying down and sweating this nasty bug out. :(

Speech Therapy

This morning Arianna had her speech therapy. Joanie was so excited about all her progress. Of course Arianna doesn't talk as much with Joanie but she was still excited. She thinks Arianna is probably right on track with her speech, maybe just a little bit behind. She is going to bring the assessment forms next time she comes. Speaking of next time, she is cutting her speech therapy to once a month!!!! I can't believe it. The past year we have been so stressed about her speech and now she is getting her speech knocked down.

I'm actually taking Arianna to my sisters this afternoon so Robert and I can go watch a movie at the cheap theatre. I don't see how people can spend $40 at the expensive theatre. I'm so looking forward to the little break. Then we plan on heading to Wal-Mart to do some Christmas shopping since we haven't done any yet. I know....it's horrible.

Hope you all are doing well!

Final results

I know this is normally about Arianna but I had to let you all know.....I PASSED!!! I'm so excited but a little bummed that I didn't make Honors. I know...my mom will tell you I'm anal when it comes to my grades. I'm going to retest to try and get honors or high honors. It will be good practice and I'm not as nervous about it this time. Besides I'm not planning on looking for work until January so it's no big deal. I'm just happy to be done! :)

Last week through pictures

Robert's close family friends from Ohio came down for Thanksgiving. Kathy was able to come and see Arianna for the very 1st time! Thank you Kathy for coming over.

Kathy, Arianna, and Nana Sarah

Cici (cousin) and Arianna out at the airfield watching their Daddy's fly.

My Grandma Betty from Oklahoma made this hooded towel for Arianna. Isn't it beautiful?!?!
Arianna decorating the Christmas tree. She only broke 2 bulbs. :)
On Wednesday the Grandma's and grandkids got together to bake Christmas cookies.

Ari baking with Aunt Lissa

Ari and Mommy

Nana baking with the great-grandkids

Ari with her Grams

Then on Thursday we went to Zoo Lights, which is basically the zoo all light up with Christmas lights, some jazz band was playing, and cookies and hot cocoa was served. It was our first time going and Arianna had a blast!

Arianna and her cousin Bryce

Mi familia...
Mommy, Daddy & Arianna

She liked the stroller for about 5 minutes then walked the rest of the way.

Arianna sitting on a pretend elephant.

Then......we saw SANTA!!! This is her very 1st picture with Santa. We can't go to the mall or anything like that so I figured she would be 5 years old before she got to meet Santa. I literally cried.... (I had to scan the polaroid cause none of us got the pic with our digital cameras)


Grams with all her kids

So we had a wonderful week full of friends and family. Tomorrow we start off with Arianna getting her RSV shots. :( I really hate her getting 2 shots a month for 5 months but it's what we have to do.

Then on Tuesday we have ST (speech therapy). I'm sure her ST will be very impressed with all her talking. I know we all are. She is talking in sentences more. She can now say "Thank you" and its the cutes thing. After everything I do it...."Thank you Mommy."

I should also get my final results tomorrow and I'm SO nervous. I really hope I passed. If I didn't I probably won't be jumping on here tomorrow....but if I did then you better believe I'll be posting. :)

I know I've been slacking alot in blog world lately. There are a few of you I need to check on and I will do that this week. I hope you all are doing well. It took alot just for me to get these pictures downloaded and posted. Hope you enjoy!

Arianna's 2nd Birthday Party!

On the way to her party

Having fun on the slide


She loves to play with Lissa her friend!

This was from Arianna's birthday party. She caughter her first fish with her Poppy.

Photo and video editing at www.OneTrueMedia.com