Orthopedic Appointment

This morning was Arianna's appointment with the orthopedic doctor. After a really nice guy took two x-rays of Arianna I was getting really nervous. The doctor came in and put the x-rays up and you can REALLY see the scoliosis in her back. I was about to freak out but he told me he doesn't think this is acurate and believes she moved when they took the x-ray. I didn't see her move but then again the slightest movement can really make a difference in x-rays. She doesn't have a significant change in her scoliosis but I asked him anyways what degree he thought it was and he said according to this x-ray, which he's doesn't feel is accurate, he would say she has a 10 degree curve. Her last x-rays showed a 1 degree curve so I hope he is right and this isn't accurate. Of course we were not going to put her through more x-rays cause she has had too many already. The second film was a side view to check for kyphosis, which is a curvature of her upper spine, and he didn't see any kyphosis on the film! YEAH! That would be really bad and require surgery if she did. I asked him about her legs and before he even examined her he said she has tibial torsion because her toes point inward. I told him my concern with her ankles so he did an exam on her legs and ankles and agreed it is tibial torsion and ankle pronation. I read that tibial torsion can correct itself by the time the child is 3 years old, but when I asked the doc today he said it can take till there 10 years old. Guess I should listen to the doc and not a report online..right? He also diagnosed her with flat feet but said she doesn't need inserts for her shoes at this time but it will probably be necessary as she gets older. We will go back in 9 months and do this all over again to see how she is doing.

I do have so many pictures I want to post but I am just way too tired to do that tonight so I'll try to do it tomorrow.

Tomorrow we take Arianna to her first birthday party!

Normalcy

Tuesday I went to the mall to meet a dear friend of mine and actually took Arianna! This was the first time she's been inside a mall besides when we had the Heart Walk inside Tucson Mall, which was before it was even opened. LOL! She did so well just sat in her stroller and watched all the people. I did really well until we sat down at the food court to eat lunch. Arianna wanted out of her stroller and wanted to play with all the other kids at the play are. My friends daughter, Alyssa who is 6, was running around playing at the playland and I know Arianna wanted to go with her. It was just really nice to be out with a girlfriend and enjoying normal day things. I actually wasn't that paranoid either, well to a normal person they would think I was paranoid but I was better than I've been in the past.

Then yesterday Arianna was invited to a birthday party which is being held at a local park next Friday and since it's outdoors I'm able to take Arianna out for a little while. It's only a hand full of people too so I'm not freaking out either.

Then last night we all went to church!! I can't tell you how long it's been since all of us went to church. She did really well and even sat in the sanctuary for majority of the service. Wednesday nights have less people and only an hour long so we will probably start going to church on Wednesdays instead of Sunday.

So as you can see we are enjoying some normalcy in our life.

The Littlest Heroes Project

I just HAD to share this with you guys. This is an organization made up of professional photographers who will provide a free photo session of any child that has a serious illness. One of our TOF kids on the yahoo forum just had his session and his photos turned out amazing. I just put in an application for us and hope we can get someone to come out. There isn't a local photographer but one up in Phoenix who might be willing to travel, but not sure how far. It's crazy cause just this week I've been thinking about how the only professional pictures we have of Arianna are when she was a few months old and she has grown so much since then. We financially can't afford to go to a professional studio again but healthwise we can't afford to go to a local Wal-Mart for cheaper pictures. Then I find out about this organization and I'm almost in tears. So go to http://www.littlestheroesproject.org/ and fill out an application cause you know you want to! :)

Good Morning America

A dear friend of mine told me Good Morning American did a story on a child that has DiGeorge Syndrome and had a thymus transplant. Here is the link to this story and you can watch this amazing journey of baby Jayla. What an emotional story it is.

Weekend

I haven't been posting much lately because I've had a bad few days and I really don't want to get into it. In the meantime, I've been spending more time with my sister and nephews which has been great. Arianna was able to go swimming and loved spending the days with her cousins.

The main reason I wanted to post was because Arianna peed in her potty for the first time today. I really had no idea how excited I would be about this. She signed 'potty' like she does after she goes pee, but we still went and sat on the potty. After 10 seconds she peed and probably thought I was a nut the way I was getting SO excited. Like last time, I gave her some ice cream and she was totally excited. What better way to get her to eat more calories! I'll be going to party city tonight to get her some little toys to keep in the bathroom and every time she successfully goes potty in the toilet I'll give her a toy. I'm really excited about this whole potty-training thing!

We're getting Robert's kids tonight so Arianna will have her brother and sister to play with this week. She is really becoming quite the little girl. The only thing Arianna has this week is Sherri (EI) coming over on Wednesday. The 31st is her appointment with the orthopedic doctor which I'm really wanting to go see him cause I just noticed this weekend how Arianna's right ankle seems to cave in a little (ankle pronation). I am hoping he can do some x-rays and make sure everything is okay. I know it's nothing major but I want it looked at. Besides that we are actually going to the mall on Tuesday with a friend of mine, which will be the first time ever Arianna has been to the mall. WHAT AM I THINKING?!?!? No, I'm actually excited to get her out and be around people a little more. We went out to dinner last night and she was totally into looking at everyone and even saying hi and waving to another toddler. Hope you all have a wonderful week. I'll post more pictures this week after I buy some batteries.

Take Care!

Setting blog to private

I will be setting this blog to private and trying to send email invites to those of you that I really want on our blog. If you don't get an email from me it's because I don't have your email so please email me at nessa1880@yahoo.com and I will send you an invite to view the blog.

Thank you,

Vanessa

Potty-training

Two weeks ago we bought a potty for Arianna to start potty-training. I know she's young but I figured it couldn't hurt to get her used to the potty. The first 4 days I was putting her on it and signing 'potty' when I put her on it. She always follows me into the bathroom when I go to the bathroom and I just sign to her potty and she goes about doing her own thing. Looks like it has paid off cause tonight we were eating dinner, by the way she is eating really well, then she looked at me and signed 'potty'. I immediatly picked her up and went to the bathroom. She sat on the potty for about 1 minute reading a book and then she went poop!!! Sorry for the gross details but this is VERY exciting for me. Who would of thought I would be so excited over poop! LOL! Looks like she is ready for this potty-training business so I better start using it more.

Amazing video!!!

***Make sure you scroll to the bottom and pause the music***

I just found this article, and this article, about two other families who have had the same procedure.

Family in need of some prayers

I have a prayer request for a family I found from another heart family I keep up with. This is part of their post from June 23rd:

For new people on our page Susannah has hypoplastic left heart syndrome and there is a link in my contact info section explaining what that is. Ok so Susannah has a leaking tricuspid valve of which is part of her defect. Since she was born the leak over time has gotten worse. Over the course of the last few months it has worsened even more causing her lower than her normal oxygen saturations. By this it means that her valve isn't doing it's job of completely closing and regurgitating blood. So this in turn has caused a secondary condition of her heart wanting to pump pump pump and not relax. I'd like to add that the tricuspid valve is between the right atrium and right ventricle. The right side is the only functioning part of Susannah's heart so this is a very important part. Dr. Ringewald explained that we have two options which are to repair the valve or she will need a heart transplant.

A post from July 11th comfirmed that Susannah, who is 3 1/2, will need a heart transplant. Today her post was very heart breaking to read. She is trying to learn how to pray for her daughter. I never thougth about having to pray for a new heart, when you know another child has to die in order for your child to receive theirs. This is very hard on Brooke, her mother, and she could really use some prayers and kind words. She gave me permission to post her carepage site for others to view. The carepage name is: OurLittleSusannah.

Writing down my thoughts

I wasn't going to post this but I decided to anyways. I have never written a poem before but the other night I was up working on support group stuff and this is what transpired.

Recovery
By: Vanessa West

I remember the moment my life stood still,

when the sound of a heart beat was all I could hear.

Not knowing when, how, or why,

but trusting in my faith to get me by.

One day at a time

was all I could do,

Just watching, waiting, not knowing what to do.

You wish you could trade the place with your child,

just so you could see that precious little smile.

“The days will be rough”, one heart mom told me,

but how am I suppose to let this all be.

The day finally comes and there’s no place to hide,

I have to give over this precious little child.

The hours drag on as you wait for some news,

just to know your baby will be with you soon.

The wait is over and all you can see,

is your precious little baby as pink as can be.

I remember the day one heart mom told me,

“You’ve made it across to r-e-c-o-v-e-r-y!!!”

Early intervention

Today was Arianna's visit from the early interventionist, Sherri. She just loves playing with Sherri and always excited about the fun things she brings over. Today Arianna got to play with playdo!!!

Arianna said 'roll' for the first time while rolling out the playdo!

Kathy, this ones for you. She was watching Yo Gabba Gabba!

Sherri let us borrow this table she had in her van. We are going to cut the chair and table legs down because they are too tall for Arianna. She already had fun sitting on it eating her lunch.

It's 5pm and Arianna is the most cranky child ever. She is still working on cutting another tooth, hasn't had a nap, and downright unhappy. I'm hoping she can make it for 2 more hours than falls asleep for the night. If she takes a nap now she'll be up till 11pm!!!

Video after dinner

Of course as soon as I bring out the camera she shys up but wanted to post this anyways. She just had dinner and was sitting under the table acting like a dog. Silly girl!

Sign language

This weekend I was trying to figure out how many words Arianna can sign. I started a list and was amazed that she can sign 58 words!!!! It just blows my mind when I really sit here and think about it. She speaks less than 10 words which you really can't tell unless your used to her language, but this is still good. I'm having to learn new signs everyday to keep up with this little girl. I honestly didn't think she would be signing this much but she is so eager to learn and picks up a new sign weekly. It's so cute cause when your talking to her and she's having a hard time understanding what your saying, she will look at your hands and wait for the sign. It just clicks better with her when she sees the sign. We got 9 more Signing Time cd's so these will really help with her signing as well.

This morning we went to my friends house for a playdate with her daughter. The girls had a blast! Arianna fell off a playgym and hurt her little neck, but after some Tylenol and her paci she was out as soon as we got in the car. I've been trying to get some more video of her being crazy but have yet to be successful since she stops everything she's doing when I bring out the camera. Hope you all are doing well.

Visit to the doctors office

We took Arianna this afternoon to get her varicella (chickenpox) vaccine. I was really nervous about it so Robert went with me. Thanks honey! Arianna was already cranky on the way to the doctors because she is working on getting another tooth, so I knew she would be a mess after the shot. She cried and wasn't very happy when she had to go back in her carseat. We stopped and got her some french fries and a shake but she was only into eating 2 french fries then fell asleep. She is sleeping right now and I'm constantly checking on her. They said to keep an eye out for any fevers or rash, which can be anytime up to a month after vaccination...WOW...thats a long time to look for side effects. I guess it just takes a long time for the immune system to react to the vaccine. I'm still very anxious even though everyone tells me I shouldn't be. I have cried more today than I have in awhile, which I'm trying to understand why. I know I should be jumping up and down with excitement that Arianna was able to get these vaccines but I'm just more nervous than anything. I keep getting nervous that she is taking such a long nap, her breathing is shallow, etc. What is my problem?!?!?! Why can't I just enjoy life and not worry about all these things!!! Even the nurse giving the shot kept reassuring me that Arianna has good t-cell function and I should really try to find peace with that. It's hard because we're not just dealing with her immune system but her lungs and I know right now her lungs need to heal. No, I don't want to keep her in a bubble, but I also don't want to have her in the hospital every month. Everyone comments on how well she is doing and that is contributed to her being home most of the time. It's like people don't get it sometimes. They think just because she is doing well at home she would do well out in public. I get her out from time to time. We go to the pet store, Target, walgreens, families houses, restruants (okay only a few times), but I'm just not comfortable taking her everywhere. Why do I still feel so different? Why does my heart ache so much for my little girl? Why am I sitting here crying, when I should be happy that Arianna IS doing so well. I don't expect any of you to answer these questions I guess for once I felt like I need to get my true feelings out.