3 Year Old Pictures

I am so happy with how Arianna's pictures came out. Check her out!

Test Result

The genetic counselor called with our Ultra Screen results and it was perfect. Less than 1% out of 10,000. This was a huge relief. I know we're still not out of the woods but it brings me a little peace. Next step is getting the fetal echo to check on the heart. Hopefully we will get that scheduled in January.

Someone is going to be a....

BIG SISTER!!!!

We are expecting our bundle of joy on June 20th.

Baby - 12 weeks

The first 2 months were really hard and I spent most of my time battling morning sickness ALL day. I've feeling better but still not 100%.

We did the Ultra Screen this week and are waiting to get the results. Many people know the Ultra Screen as the "Down Syndrome Test." It take the amount of fluid in the neck along with blood work and gives you a percentage of having a child with Down's Syndrome but many people don't realize it can check for Trisomy 18 and Trisomy 13 as well. I was shocked when the stenographer told me it can also detect if you are at risk of having a baby with a heart defect. I know all this doesn't change the fact that we will have whatever God blesses us with but I was never given this option before so I decided to do the test. Plus I got to see my baby in the process!

We will definintly have a fetal echo done in the next month or so. I'm extremely nervous about this pregnancy. I had such a hard pregnancy last time that I don't know what to expect. So right now I'm asking for prayers for a healthy pregnancy and baby.

Another thing to add to our DiGeorge list

After having so many problems with our dentist I took Arianna to a new one today. He was really nice and way more thorough. Unfortunatly, she has gone from 1 cavity 2 months ago to 6 cavities.

I have been brushing those teeth like crazy so I know this is just a DiGeorge thing. Many DiGeorge kids have a lack of enamel causing cavities and other problems.

This is a really serious issue since she is a heart patient. She will need to undergo anesthesia and have her teeth x-rayed, cleaned, cavities filled, and hopefully nothing more. Hopefully, once this is done we can keep up on it and prevent future issues. We are now brushing more often, flossing and using floride. I didn't realize I could give a 3 year old floride so thats good to know.

Now we wait for the cardiologist to decide if this can done in-house or if it has to be done at the hospital. I have a feeling she needs to be at the hospital which means we might have a problem getting her scheduled. Apparently, the dentist only goes every few months and he is booked for December. Grrr! Hopefully, he will see the concern and make an exception. I have already told him the issues I've had with our last dentist and he reassured me we shouldn't have those issues and if I do to let him know personally. Nice to have a caring dentist!

Happy Birthday!

We had a very fun Thanksgiving this year. Arianna's birthday was on Thanksgiving this year! She woke up to this in her backyard....

Let's just say she was one happy birthday girl!

We had a wonderful lunch with family and then started the birthday celebrations.

I don't know how she did it, but she stayed up till 9 o'clock that night. She was so tired she slept through the entire night. :)

So I have to say this was one of the most emotional birthdays for me. I remember when she was born we would talk about "when she turns 3" all the time. We knew her birthday would fall on Thanksgiving and thought it would be great to host Thanksgiving at our house. Well that thought became a reality this week. I continue to be amazed at how far she has come. I guess every birthday is a bit emotional for me because it marks another year we've made it with our baby girl.

As for other news, Arianna has been excepted at the school district to receive speech therapy once a week. However, her pulmonologist does not want her attending any sessions at school during the winter. I'm still waiting to hear from the ST to find out how many children will be with Arianna. If it's one-on-one then I might allow her to go. If not, then I'll push for at-home therapy through another program.

Some of you may remember Arianna had a dental visit 2 months ago and needed to get a cavity filled and cleaning done at the hospital. I've been waiting for the insurance to approve this and finally I spoke with the dentist office last week and apparently I have to pay $400 for before they will do anything. I called insurance and they said everything is paid for and the dentist is trying to double dip. Apparently, the dentist office tried to get a professional hospital call approved for $88 and insurance denied it. Insurance has already approved this procedure to be done at the hospital so they will not pay for the doctor to drive there. So....this means they are trying to charge me $400 for the dentist to freaking DRIVE to the hospital!!!! You have got to be kidding me!!!! I'm waiting to talk with our pediatrician on Tuesday at Arianna's 3 year check up. I've already given her a call and she was going to call both my insurance and the dentist office. This is why I love our pediatrician! I'm hoping she has come up with a better answer than I have.

I thinks thats about it for us. I hope everyone had a wonderful Thanksgiving.

Mended Little Hearts BBQ

This past weekend was our Mended Little Hearts BBQ. We had such a wonderful time!

All but 3 are heart kids.

Aunt Lissa & Ari in the jumping castle. Definitely Ari's favorite!

Ari & Sofia

Heart Buddies!

Halloween 2009

I know I'm a little late but here are some pictures from Halloween.

All the kids before heading out

Alyssa & Arianna

(notice Arianna's mouth full of candy)

H1N1 Vaccine

After being on the fence about the vaccine, we took Arianna on Monday to get it. I'm SO relieved to have it done! She will need one more shot next month to be 100% protected so I'm just hoping they get another shipment in before then.

After weighing the pro's and con's we believe Arianna getting the swine flu would be worse than the shot. I know many of you are on the fence about it and I hope you come to the best solution for your child.

Train

Every time we go to Reid Park we always see the train go around the lake. We have always been so paranoid about germs that we have never let Arianna go on it. Well this weekend we changed that!






I can't tell you how good it feels to do normal things with my daughter. There is alot of hand washing involved but we do it.

Trip to Apple Annie's!

This saturday was our Mended Little Hearts trip to the pumpkin patch. We had a blast! We got to meet a new heart family which was really nice.

Photo and video editing at www.OneTrueMedia.com

Ortho appointment today

First of all...it's 1:40 am so if this post doesn't make sense...sorry

Today we went to Arianna's orthopedic appointment.

First we did the x-ray and then played Candyland for about 10 minutes before the doctor came in.

He looked her over and said he can barely tell by looking at her that she has a curve. He seemed very laid back.

Then he tells me she hasn't changed and still has an 18 degree curve. I quickly reminded him that her curve was only 10 degrees 6 months ago. Man this doctor irritates me!!!

At this point she is in no risk but if she gets over 20 degrees he wants to put her in a brace. :( At this rate he expects her to be over 20 degrees in about year.

He mentioned it's possible she won't get worse but didn't sound very sure about that.

Then the Hanger guy came in and checked on her orthotic inserts and her feet and said they look perfect!

For now we enjoy the next 6 months and will worry about the brace at our next appointment.

Sorry for being so short and to the point...I'm exhausted and have to be up early for feeding therapy. Speaking of which, Arianna finally weighs 26 pounds!!! We have been working on that for 6 months. :) Her height is 36 inches, which is a 3 inch growth over the past few months. I'm so proud of her growth!

Okay....good night~

Long time no post...sorry!

I can't believe it's been this long since I've posted. Guess I'm addicted to using Facebook these days. :)

So let's see....what has been going on...let's get the not so good stuff out the way first.

Arianna went to the dentist last week and found out she has her first cavity. :( I feel like it's totally my fault and that makes me feel horrible. Because of her heart condition she needs to have this done in the hospital under anesthesia. I HATE putting her under again. It's been SO long since she has had to be put under. This will be the first time I have to explain to her what is going to happen and I'm not looking forward to that. Anyone have any suggestions on how to explain that to a 2-year-old that understands everyone???

I'm just going to post alot of pictures from the past few weeks...starting with today. Let's just say I was outnumbered. GO COWBOYS!!! (Even if Romo sucks!)

Ari & Tata

Ari & Kyoni (sister)

Cyrus(brother) , Ari & Ciara (cousin)

In this picture we made Ari a ninja mask out of toilet paper..lol!

Ari & Shawn (cousin)
Cyrus, Ari, Shawn, Bryce (cousins)

Had a great night when they all stayed the night!
We made these cute pumpkins out of navel oranges and filled them with fruit salad! YUM!

Trip to the children's museum

Photo and video editing at www.OneTrueMedia.com

Friends

We had such a fun day with some friends from our Mended Little Hearts support group. Liz, who is a CHD survivor herself, has a little boy who is 2 months older than Arianna. The kids get along so well!

First we went to lunch and that was fun as we had to keep running our newly potty trained 2-year-olds to the bathroom every 15 minutes. lol!

After lunch we went over the Beads of Courage event that was going on. This is such an amazing non-profit organization. They are in over 60 hospitals throughout the U.S. but of course not in our local hospital. Ugh...I'm going to try and see if I can help change that. ;)

Kyle & Arianna watching people make the beads with fire. Arianna was more scared than excited

This was really awesome to watch

Then they got to pick out their own beads to make a bracelet.

Okay...even I had to get in on that action. :)

We had such a blast we didn't even realize we were there for 2 1/2 hours. Of course Arianna crashed on the way home so she is wired right now. Tomorrow we have to get up early so we can go to our monthly Mended Little Hearts gathering at the Tucson Children's Museum. I'll post pics when I get home.

Roseola is gone!

Thank God! Arianna was sure testing me all week long. One of the symptoms of roseola is irritability...yeah that's also a symptom of being 2-years-old. lol! I'm just glad my baby is back! :)

Not much is going on lately. We are going to enjoy a week without therapy appointments or doctor appointments.

I just realized I never blogged about Arianna's Holter monitor results. Sorry. I got an email from her cardiologist and the monitor came back normal! :) We will continue our 6 months check ups as usual.

Roseola again!

Arianna's fever broke today and out came the rash. She has roseola again! Good thing she is no longer contagious cause we are headed to Robert's brothers for a BBQ this afternoon. I didn't think kids got that more than once but I guess my kid does. I was beginning to get concerned about her swollen eyelids so I'm glad to find out its just roseola and not something with her heart.



Hope you all are having a wonderful Labor Day weekend!

Arianna has been doing alot better but still battling a fever. She went to bed at 4pm and still asleep. I don't blame her. I took a nap but it was not a planned thing...my body just shut down. Hopefully she gets a good nights rest and wakes up without that darn fever.

Sick

Last night Arianna woke up in the middle of the night throwing up. After a horrible night of waking up every 30 minutes because she was gagging we finally decided to just get up.

The morning was rough but her bath definintly helped. She didn't eat much of anything and barely drank until the evening. She spiked a temp and the highest it went was 101 since we are keeping on top of the Tylenol.

She actually went to bed at 4:30 after a nice bath and woke up at 9pm to have a pedialyte popsicle and very small amount of milk. She quickly went back to bed and has been doing alot better tonight.

We had to cancel her early intervention appointment today so we'll have to reschedule sometime soon.

I'm thinking it was just a 24 hour bug...wouldn't that be nice! :)

Well just a little update on Miss Arianna.

Immunology appointment today

Today was our annual appointment with the immunologist. Arianna had labs drawn a few weeks ago so we have been waiting to get the results. I knew we were going to get a good report but I wasn't expecting this....we were discharged from immunology!!! Can you believe it?!?! Arianna's immune system is functioning like a typical 2 year old. :) I just about feel out my chair when he told me that. We just have to get an annual CBC done, which her pediatrician can do, and if something looks suspicious we can go in to see him. Othewise...NO MORE IMMUNOLOGIST!

When she was born I was told how sick she was going to be and how she would probably need IVIG therapy every 4 weeks for the rest of her life. A common cold would put her in the hospital and who knows what else would happen. We have come along way since those day.

So I'm sitting here today just overwhelmed with emotions. Arianna WILL go to school and have friends and do all the things a healthy child should do. Yes, we still have to worry about her heart and lungs but we don't have to feel so isolated anymore. No I won't go around you if you have the flu or a cold but I will no longer live in a bubble.

So today was a GOOD day! :)

After that wonderful report we got to take Arianna's Holter monitor back to the hospital. I'm not sure how long it will take to get the results but I'm assuming sometime next week.

I hope everyone has a wonderful weekend...I know mine has started out great!

Holter Monitor

We got it on! Just have to make it another 16 hours till it comes off. She is actually fine wearing it as long as I don't take her shirt off but I had to get at least one picture.

So thanks to a wonderful heart mom in our Mended Little Hearts group I have Arianna wearing a monkey leash to hold her Holter monitor. :) It works like a charm!

Photo and video editing at www.OneTrueMedia.com

Arianna is helping me make NICU care bags for the heart families!

I just love her SO much!

So the tech today mentioned how much she loved the monkey backpack and how she wished she had some for her pediatric patients....so we our going out right now to buy some backpacks for the cardiology clinic at the hospital. It's working so great for us I want every family to have the option of using this for their child. So I gotta run...

My BIG girl!

Arianna has been kicked out of our room again..lol! Since she is doing so many new big girl things (potty training is going great!) I have decided to try putting her back in her own room. Last night was the first night and she woke up twice. The second time she woke up I let her stay in our bed because it gets ridiculously bright in that room in the morning. So we went out and bought her some pretty purple curtains, which she loves, and put them in her room tonight. Hopefully it will help. I know it will take time but she is going to be 3 years old in 3 months and my goal is to have her sleeping in her own room by then. We'll see...

I just love this picture so I had to post it. She was reading the ASL (American Sign Language) alphabet poster.


So the story behind this picture is that my mom bought Arianna a glass tea set, which she loves. Well as you can see I put a towel down so she could have fun playing with water. Well after she was done I went to pour all the water out and on my way back I slipped on some water and broke all 4 cups!!! I felt horrible and still can't find the same set to replace. Go figure it wasn't the 2-year-old who broke her glass tea set. lol!

Tomorrow we are going to get the Holter monitor for Arianna. She has to keep it on for 24-hours. I'll post pics tomorrow.

Cardiology Update

I am finally getting around to blogging about Arianna's cardiology appointment. I know some of you already heard a little bit about it on Facebook.

Well the night before her appointment we practiced doing an EKG because it's been since she was 5 months old since her last one. Arianna was a little apprehensive at first but at the end she was asking to do it again and again.

Practicing with some stickers and string

The night before Arianna's appointment we made cookies for the doctors and nurses. Arianna just loved handing them out to the nurses. Sorry the pictures are blurry.

We waiting for an hour and a half before the doctor came in and it wasn't even our doctor. Last time we had this guy come in our room I told him I wanted to see our doctor and that was that. Well I asked about Dr. K (our doc) and he said it could be awhile till we see him so I decided to go ahead and let him proceed with the visit. It doesn't hurt having 2 docs taking a look at her. He has never meet Arianna so he read over hear chart then did his exam.

He said her heart murmur sounds the same as is written in her chart from 6 months ago. Thank God! He wanted to get an echo but I told him "our" cardiologist wanted an EKG done at this visit so he decided to go ahead with that instead.

She did okay at first since we practiced but after 3 or 4 minutes she was ready for it to be over.

After the EKG was done the doctor reviewed the strip and said her QRS wave was a little bit longer than normal. However, children with a tetralogy repair never have a "normal" EKG anyways. I guess the QRS wave looks alot worse on paper than it measures out to be. That being said he wants Arianna to have a 24 hour Holter monitor done to see if she is having any arrhythmias because that is common in tetralogy patients. I'm actually really glad they are doing this because there are no major signs of arrythmias and alot of children with tetralogy have died from them. I'm still waiting for someone to call me about getting the monitor so I will probably give them a call tomorrow to make sure they haven't forgotten about us.

So we were leaving the clinic and about to walk out the front door when I hear someone yelling my name. It was the cardiology nurse. She said Dr. K (our doctor) saw Arianna's name on the board and he wanted to say hi to her. :) That made my day so we rushed back to clinic and spent a few minutes with OUR doctor!

Arianna just LOVES this man...and so do I! He asked how her summer was going and what she was doing. She told him about bowling, swimming and her cousins. lol! I told him about the EKG and the Holter and that I'll be emailing him when she gets it off so he could take a look at it. At this point there is no need to stress about anything since this is just a precautionary test.

As far as other things going on, we meet with the school district this week to have our transition appointment for preschool. Basically it was all about getting her paperwork in order and telling them about her medical issues. Now don't get too excited...she probably won't attend preschool but we wanted to see what the school would offer her for therapy since she is being cut off at 3 years old from the Arizona Early Intervention Program. We have to go back for testing in the next few weeks so see if she even qualifies for special education preschool. Right now we are just looking at possible speech therapy being the only need for her. :) Which by the way, this week was her LAST speech therapy session! So I'm not sure if she will even qualify. We will just have to wait and see.

Friday we see the immunologist so that will be interesting. I'm praying for a wonderful report!