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.

Make an on-line slide show at www.OneTrueMedia.com

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.

____________________________________________________________________

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

Happy Birthday!!!

Today is Arianna's birthday. I can't believe she is already 2 years old. I haven't had time to post videos or pictures but we had her party on Sunday. Here is a picture I did take of her today.

I'll post more when I get some time.

The early interventionist came over today and we went to the little park by our house. Of course I forgot the camera but she had a blast like always. At the end of our visit I asked if we could take December off and she said yes. Have to admit it's great to know Arianna is doing so well we can take a whole month off from seeing her. :) She'll call me after Christmas to schedule a visit in January.

The only therapy we will have in December will be her speech therapy. We don't see her ST until December 9th and that will be an entire month without therapy, due to our therapists schedule, so she will be pleasantly surprised to hear all the new words.

As for myself...we'll I'm studying away trying to get prepared for my final on Friday. I'm a complete wreck about it at the moment. The hardest part is waiting 2 weeks for my results. At least that gives me time to clean my office. For those that have seen it know it really needs to be done.

You won't believe it...but....I went roller blading today with Arianna. Of course she stayed in the stroller but I pushed her around the walking trail at the park twice. Yeah for me!! For a kid who really doesn't like the stroller, she loved it. She was actually crying when I told her it was time to go. Guess the wind in her face felt good (Sorry Kathy, I know Isaac doesn't like the wind) Looks like I finally found a way to exercise, get out of the house, and do something fun with Arianna. Just don't expect any pictures of this ordeal cause I will never let it happen. Can you believe I was using the same old roller blades I got when I was little. Good thing my feet haven't grown. :) I'm going to try and go out again tomorrow. Arianna's early interventionist wanted to meet at a park anyways because we are having such great weather.

Fun at the park!

Since we are isolated again we decided to head out to the park for some fun outdoor time.

Ari with her Daddy

Sitting in a tree for the first time. She even ate a few french fries while she was up there. It was so funny cause she kept asking my mom to put her up there and of course my mom wasn't going to say no. LOL! You need to realize where she is sitting is about 6 feet off the ground. :)

Ari with her Mommy!

Ari touching the leaves. She loves when her Daddy lifts her up like that.

Make an on-line slide show at www.OneTrueMedia.com

Videos

I thought I would post a video so you can hear a little bit of her talking. She says "da-do" for angel and it's just so cute!

Make an on-line slideshow at www.OneTrueMedia.com

Look at You Now

Thanks to Steve for posting this on his blog. This is a wonderful video filmed at the Cardiac Unit at Children's Hospital at Vanderbilt.

This is Mark O'Shea singing "Look at You Now."

***Scroll to the bottom and stop the music so you can hear this song***

Nutrition appointment yesterday

I finally finished with the course I was taking but still have to take the final. Needless to say I've been taking it easy the past few days...I really just needed a break.

But we did see the nutritionist and OT yesterday. This is really the scale I go off of because she is completely naked and accurate everytime. Are you ready....she officially weighs 22lbs 2ozs! That is a 1lbs 2ozs weight gain in 2 months! Her height was 33.1 cms which is a 3 cm gain in two months. This puts her just below the 10th percentile for weight and 25th percentile for height. It's so nice to have my baby higher on the charts finally. :)

Thats about it going on here. We spent a nice relaxing day at home. Arianna fell asleep at 5:45pm and woke up about 9pm ready to play. *sigh* Looks like she'll be up for awhile. Oh well...good thing she can sleep in since tomorrow brings another relaxing day. Daddy on the other hand has to be up at 4am for work so I better go spend a few minutes with him before he's off to bed.

Venting

Okay...I just need to vent for a second. We took Arianna this afternoon to get her first round of synagis and the nurse giving the shot was sick. Can you believe this? First I need to expain that this is not a doctors office just an office they rent out since their main office is in Phoenix. She was going on and on how she started getting sick on Thursday and Friday it was horrible. Then tells me the coughing started back today. I gave Robert the look and he just shook his head. So when I got home I called their main office and told them about this and they were very upset. The director told me she is very thankful I called because they never get feedback on their Tucson clinic. I told her I know alot of new parents don't speak up and wouldn't even know who to contact to address this. Arianna is the oldest child they are seeing for Synagis so I feel responsible to look out for these families in a way....I know it's silly but I do.

Nothing but good stuff in this post :)

Helping mama clean.

She loves helping me in the kitchen.

This was the only way I could get her to eat for 2 days.


Too cute!

As you can see she is doing just fine. Her runny nose stopped the following day. However, I woke up with a little head cold probably just due to the weather change. Can you believe I actually pulled my jacket out last night.

Tomorrow I take Arianna in for her first round of Synagis. I know she won't be happy about that but it's for the best.

I almost forgot to tell you all....this weekend Arianna's talking has really taken off. I keep a list of words she can say for the speech therapist and I just added all her new words in it tonight and she can say.....65 words!!!! She can say seven 2-word sentences and one 3-word sentence, which is "help me up" (when she wants to help me cook). I really think keeping this word list for Arianna has really helped me out. I'm starting to work on putting the words I know she can say into sentences and have her practice saying them. I'm also starting to teach her more signs again because I've really backed away from it lately. It's amazing in one afternoon she picked up 4 new signs. This kid is amazing! She is really into saying different letters so we are working on saying and signing letters with her right now. She's also doing really good with her colors. It just amazes me how much she picks up.

And one last thing....Arianna went potty in her toilet today!!! I haven't pushed potty training because she's been working on her speech more lately. Well the past few days shes been telling me when that she needs to go potty...yes she can say "poye" so we go sit on the potty. I walk away for a minutes cause she likes her privacy...isn't it funny already and she needs privacy...and she runs up clapping and saying "yeah". She is growing up so fast. *sigh*

Arianna started with a little runny nose today. Go figure...you go to the doctor for a check up, healthy, and you end up getting a runny nose. I just hope that's as far as it goes.

Tomorrow Arianna gets to go spend the afternoon with her Grams and Bepa and I'm excited to get a little break. I honestly can't remember the last time I was home without her. I will be using this time to study, study, study, so it's not a real break but close enough. I feel like a horrible mom for being excited about having my daughter spend a few hours away but I guess all moms go through it. She is just such a hand full lately. So Mom...you better be ready. ;)

Pulmonology appointment today

Today was our appointment with the pulmonologist. I have to brag on how good my little girl was. Normally she cries through the measuring process but not today. She was a total angel. She weighed in at 21 pounds 13 ounces, which is up 13 ounces in 2 months. Not too big of a gain but it's a gain so I'm taking it. :) Her height was 33 inches, which is up 1.1 cm in 2 months.

Then the resident doctor came in to get a history....normally I don't mind when I have to talk to them but today was just irritating. I understand everyone needs to learn but sometimes I just wish they would read the patient history before assuming what was done/or wasn't done. This was our conversation:


Resident: So when is she having heart surgery?
Me: She had surgery when she was 6 months old.
Resident: So she's done? (seriously I thought it was only non medical people who asked this.)
Me: No...she will need a pulmonary valve in the future.
Resident: So when will that be?
Me: Not sure. Cardiologists don't give you a timeline.
Resident: So she had like a shunt put in? (her exact words)
Me: This is where I explain she had the full repair but she needed me to go in further details to explain everything they did to her pulmonary valve. Guess for curiosity sake.
Resident: Just looked at me with this "WOW" look on her face.

Not sure if she gave me that look because of everything I knew or if it's because I'm just a heart mom and she's the freakin resident and I had to explain everything when all she needed to do was take a few minutes to review the chart. Sorry it just really irritated me today.

So after our brief conversation she did her physical exam on Arianna and I was so proud of my little girl. She did everything the doctor asked, including opening her mouth which she never does.

The pulmonologist comes in and he was so sweet and pleasant to her. He picks her up and puts her on the table and starts his exam. The entire time she is all smiles and lets him do whatever he wants to her which including making her lay down and she normally cries when they do that. The resident kept saying she's amazed that shes only 23 months old cause she is so well behaved. Yup...that's my little girl. YEAH RIGHT...only for them. LOL!

So the doctor said she sounds good but wanted to get a chest x-ray to compare to the previous 2 films which had some changes on them. Since Arianna is healthy at the moment (crossing my fingers it stays that way) I took her immediately to the other clinic for x-rays. The doctor should be calling me next week with the results.

We are to follow up with him in 3 months, earlier if she gets sick. He is a little concerned about the fact that her August cold caused her sats to drop in the 80's and be put on O2 at night. He really doesn't want to see what a winter cold will be like for her so he told us to be cautious and not take her anywhere populated like the mall, stores, etcs. They did check her O2 sats when we were there and she was satting at 96% which is what I've been getting at home.

I did ask about taking her up to the mountains and possibly on an airplane (not sure if we can even afford it, but in June is the Mended Little Hearts convention in Florida and I really want Robert and Arianna to come with me). He said we can take her for a trial run up the mountain but we have to bring the pulse ox and oxygen. He just stop at the first rest stop and check her sats, if she's good then we can go to the next one, so and so forth. If she can hold her own at 7,000 feet then she is good to go on a plane. He said if she does require oxygen at that level it's okay cause we could always arrange for oxygen on the plane. (Kathy your the first person I thought of when he said this.) He also suggested maybe taking a train ride to Florida but I'm not so sure about that. He did say even though her sats may be borderline at a higher elevation while resting we have to take into consideration that physical activity will make it worse.

As for me....I've just been busy studying. I'm hoping to take my final in two weeks. I'll be so happy to have this course over with and look forward to working as a medical transcriptionist starting next year!

Arianna LOVES her big brother!

This is what I came home to this afternoon....

Arianna covered in marker.

Then we went to the little playground by our house.

By the time we left she was able to go up the stairs and side down all by herself. I had my camera with me that can also take video, so the quality isn't that great but I just had to share.

Make an on-line slideshow at www.OneTrueMedia.com

~Happy Halloween~

Here's some video I took last night. Make sure to scroll to the bottom and pause the music so you can hear her little voice. Don't mind the very end of the video, I was taping over Robert's airplane stuff (and yes he gave me permission.)

Make video montages at www.OneTrueMedia.com

She was so tired my baby girl fell asleep trick or treating

She did wake up once we got back to Aunt Lissa's. She made out with alot of candy and had a blast! I have to say Halloween is quickly becoming one of my favorite holidays. Having kids sure makes this holiday so much fun! :)