Bike ride!

Check out my baby girl on her bike! This was her first bike ride and she seemed to like it. We were only able to make it to the mail box and back home...as you can see it's right across the street so it wasn't that far.

I also have to tell you the new words Arianna can say: arm, knee, and eat! Today was the first time she said 'eat' and I was SO shocked. I was asking her if she was hungry then signed 'eat' at the same time I said it...and she signed & said it back to me! I started a list of words she can say and we are up to 26 words but only 18 words that someone besides myself could understand. I'm so proud of my baby girl! It's been a slow road with her speech but I know she will talk when she is ready.

Chef Rock from Hell's Kitchen

I get updates from google anytime something is posted about "Congenital Heart Defects" and "DiGeorge Syndrome". This was so interested I had to share it with you guys.

http://www.marketwatch.com/news/story/chef-rock-rock-signature-chefs/story.aspx?guid=%7B42C64A85-63C5-4327-9914-FCE1F5F88F1F%7D&dist=hppr

Pictures

Where did my baby go?

Drinking from her cool straw

Watching her favorite show...Wow Wow Wubbzy!!

It's so cute....she finally smiles for the camera.

I know I've slacked on the photo's lately so hope you enjoyed.

Our day has been rather good around here. It started off waking up by getting the sweetest little kisses from my baby girl! That just melts my heart when she wakes me up like that. :)

Then Arianna played in the playroom because we finally got a cable box in there that gets the Noggin channel. It's so funny cause we've had that room set up for her ever since we've moved in, with the same toys, but now that she can watch her shows in there she won't play anywhere else. I'm liking it ALOT!

Then I had to head over to the hospital to visit with a family in ICU. Today was my first time taking one of my Mended Little Hearts visitors along with me to show her the ropes. Unfortunatly, the mom just stepped out so we weren't able to visit with anyone but we did go to the cafateria and chat for awhile. I can't tell you how great it feels to sit down face-to-face with another heart mom and talk. I felt so normal and comfortable talking with her. And she has the cutest little 4 month old that I can't wait to hold.

So when I got home I decided to download all the video footage we've acquired since we purchased the camera. I'm actually downloading the surgery footage right now...not the best time of our life but I'm happy we have it on film to show Arianna when she's older. After watching all the infant videos it made me appreciate all that we've been through and see how far Arianna has come. It was just one year ago that she was learning to crawl and 8 months ago she was taking her first wobbly steps. It's amazing how time flys by. I can't wait to get all the footage on the computer and start putting them onto CD's. I would like to put together a couple CD's of different stages in her life, along with pictures and music but I'm not sure how to do all that yet. I really need to start scrapbooking but I'm not all that good at it yet and it can be rather expensive. Maybe Krista can let me borrow her Cricut machine since I've hear those are pretty neat! I'll have to safe up to get one myself.

Robert is feeling pretty crappy today and laying on the cough right now. He caught the same virus I had. :( I have some really cute pictures of him and Ari relaxing on the recliner but I'm not sure he'd like me to post those.

I did hear back from the pediatrician and of course Arianna is doing alot better today. Her sats when sleeping were in the low 90's but she still wants me to give her the Albuterol before bed and monitor her to see if that keeps her airways open all night. She wants us to keep that up through the weekend and see if that helps. We set up an appointment for Friday because the pedi didn't want us to get into the long week (Labor Day) and have problems arise. I love our pedi!

Arianna took a late nap at 4:30, which seems to be the norm for her lately. Ugh! So I tried to wake her up at 5:30 but she just laid on me and cried everytime I tried to make her wake up. Finally at 7:00 she woke up, so it's going to be a late night for my little rugrat.

Holding her own

After her nap she was still satting on the low side so I used her Albuterol inhaler and that made her sats jump up to 95%!!!

She did really well tonight without coughing or wheezing. Right before bed I gave her some Motrin because she cut another tooth tonight and she immediatly threw it back up along with some nasty mucous. I know that's nasty...but at least she got it out.

Once she was asleep I checked her sats again and she was running in the high 80's and sounded a little junky. I gave her another dose of her inhaler and that seemed to help. She's only satting at 90% right now while she is sleeping which is not where she should be so I'm still going to put a call into the pediatrician tomorrow and see how often I should be doing her inhaler and for how long. It seems to help her a little so that is reassuring. I'm just worried about going into the winter season now knowing her lungs are still so fragile. It wasn't even like she caught the full blown respiratory bug that I had and it's causing her this much trouble. I am really not looking forward to all that isolation again but it's a small price to pay for the health of my child.

As of right now she is holding her own so we won't put the oxygen on unless she drops into the 80's. I'm just so happy this time around we know she has lung issues and have all the things at home to treat it. It's better than letting it get worse over time then being put in the hospital for a week.

The lady came out to check our equipment today and everything checked out fine. We got a new lead for the pulse oximeter but she didn't bring extras. UGH!! We can only get 2 a month per our insurance which is SO stupid. So basically the reading we were getting yesterday were probably correct which means something is going on with her little lungs.

I did talk to the pediatrician that was working yesterday, not our doctor, and she told me to do the Albuterol treatments every 4 hours if she was wheezing. Of course she is no longer wheezing but be is still satting on the low side. I checked her when she was taking a nap this afternoon and she was at 87% so I hooked up the O2. Then when she was eating dinner I checked her again, since this is the only time she is sitting still and she was satting at 90%. She normally sats around 94% so this is a little concerning. I would understand if she was coughing and showing symptoms of a cold but she is not. So we'll keep up with the O2 during naps and at night. I have completely misplaced the cloth tape I need for her face so I'll be running out to get some more.

Our pediatrician is in tomorrow so I'll put a call into her first thing in the morning and see what she wants me to do.

Thanks for checking in on my girl. I finally bought some batteries so I'll post some pictures later!

Quick update

***So after I updated I laid Arianna down for her nap and checked her pulse ox...86%...then dropped to 82%. This is a huge difference then her normal 92% so I waited and waited and it kept bouncing all over the place but never above 88%. I checked it on myself and I had a reading of 95% which is normal since I'm still feeling congested. So I nicely ask Robert to bring in the HUGE oxygen tank from the garage and by the time he gets it in our room the stupid machine isn't reading correctly. UGH!! I called the home health people to order more pulse ox leads because we are out of new ones and the lady thought it would be better to have a clinical visit to make sure the machine is working properly. So tomorrow someone should be coming out to check our equipment. This still doesn't help us today thought.

Earlier I put a call into the pediatricians office to ask about her Albuterol treatments. You know how many puffs and how often since we've only used it while she was really sick back in February. I tell her the symptoms she was having and how our pulse oximeter wasn't working correctly. I told her Arianna normally sats about 92% while sleeping so I know if she has any respiratory issues that would make her sats drop below 90%. She sad we should put her on oxygen while sleeping until we get our pulse ox fixed.

Let me tell you what...she was PISSED when we put the cannula on her. She was sleeping and the second we put it on her she was screaming as if I was hurting her. Needless to say she did not get a good nap and asking super cranky right now. ***



I'm finally feeling better but it looks like Arianna caught the same virus as me. She is coughing and wheezing so we started her Albuterol inhaler this afternoon. She is still playing and running around so it's not affecting her too much. She's been taking really long naps during the day and staying up till midnight so it makes for a very long evening around here. Everyone tells me to just wake her up after an hour....yeah right...you try and do that and she how she acts. Poor baby just needs her beauty rest.

Mommy yuckies

As you can tell from the title of this post, I'm not feeling all that great today. I tried to sleep in a bit but Arianna just loves me too much and didn't want to let that happy. I just love how much she loves me! :)

Amazingly, Robert has really stepped up and helped me with Arianna today. Not that he doesn't help out but he's going above and beyond what he normally does. Honestly, I think that's because he want to go RC flying tomorrow. Men always have their motives. LOL! So I'm sitting here in peace and quite for the 2nd time today and it feels kind of weird to be home alone. Early he took her to the grocery store and right now he took her to the park to meet a buddy of his...doing some guy stuff. I could get used to this! :)

All in all it's been a quite afternoon with Arianna taking a 3 hour nap on the couch while we were able to sit and watch an entire movie!!! That's a miracle in itself. LOL!

Arianna started with a cough a few nights ago while she was sleeping so I'm beginning to wonder if maybe this is something she passed on to me. She started with a little coughing this afternoon but I immediatly laid my hands on her and prayed that she wouldn't get this head cold. We know how yucky that would be for her. At least we have the oxygen tank still just in case we need it, but I'm hoping we don't.

I'm beginning to feel yuck but thought I would come on here and post since I had the time. Hope you all are having a wonderful weekend.

Tired

It's 11:25 pm and I'm sitting her feeling pretty tired and ready for bed. However, Arianna took a 2 1/2 hour nap tonight from 6pm - 8:30pm so she is still up and going. I tried to keep her little bum up but she wouldn't wake up so I had to let her nap. I was hoping she would stay asleep all night but that didn't happen. My parents came over tonight so how could I keep her from wanting to wake up and play. She was so silly tonight it just blessed my heart to watch her play.

Oh yeah, I woke up this morning with a sore throat. Hopefully its just from having the AC on too low cause I really don't want to pass anything on to Arianna. She's already had a bad week. :(

Feeling better!

Arianna had a fever last night and I gave her tylenol about 2am and this morning she woke up at 10am with NO fever! I know some of you are thinking, "She woke up at 10am, what a lucky momma!" Just have to clarify that she went to bed at midnight. :( I'm not sure if that second dose of benadryl just wired her up or what?!?!? But today is a much better day. Thanks for all the kind words over the past couple of days. You ladies sure know how to make me feel like a normal crazy heart mom!!! :)

MMR Reaction?

I'm beginning to thing this is a reaction to the MMR vaccine. Yesterday we noticed some red dots on Arianna's back which I thought it was just from a heat rash. Well this morning she has them on her chest, stomach, back, bottom, and arms. I called the pediatric nurse again and she says this is common to have a rash 7-12 days after the vaccine. She knew how scared I was for Arianna to the MMR in the first place so she was really sweet to me. She told me to get some Bendryl and see if that helps the rash. I told her if she still has the fever and rash by tomorrow I wanted to bring her in to get looked at since it will be 11 days after the vaccine and I really don't want to get into the weekend like this. I know...crazy mom...but it's my baby and I need to be reassured she is okay. It's not like she has a normal immune system and she is at a higher risk of getting these viruses. But I put my faith in God that she is okay and this will all clear up on it's own.

All over the place with this post

Arianna still has a fever but is finally playing and acting more like herself. This was us earlier this afternoon taking a nap. She actually slept for 4 hours!!! Dad thought it would be cute to take a picture of us with my camera phone....too bad he forgot to shut the volume off and woke us up, but only for a second.

We were passed out!

I'm not sure but this fever could be due to the MMR vaccine she had last week or the fact that she is cutting another tooth. Who knows?!?! It's just weird because Arianna's sister and my sister are both sick today as well and all 3 of them have different symptoms. We spent Sunday together for my birthday, which was yesterday, so who knows what is going around. Here's a birthday picture I just LOVE! She is really into blowing out candles so I can't wait for her 2nd birthday!

And guess what I got for my birthday....

An iPod!!!!

I have been wanting one for a few months but didn't think I would actually get one. I feel so spoiled now. Now when I get irritated I just put on my headphones and tune everyone and everything out :) I can't wait to dowload some of the teaching CD's I've been listening to. Since we can't go to church that often I get my sermons in this way.

I also wanted to share with you my birthday verse. I know I shared this with you all before but for those who didn't see it. Check out http://www.birthverse.com/ and see what your birthday verse is. Here is mine:

Romans 8:18 NIV

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.

AMEN!!!

Okay, I know this blog is normally about Arianna but I have a prayer request for myself. This Monday I went to see an orthopedic doctor for my back. I have dealt with back pain since I was a teenage and hip problems since I was born. I had some x-rays taken a few weeks ago and my primary doctor diagnosed me with something called 'Pars Defect'. Basically the pars is the articulating part of your vertebrae and I was told that I have two fractures there. So I went to the orthopedic doctor who did an evaluation and reviewed my x-rays. He told me I indeed have a bilateral Pars Defect on the L5, spondylolysis (basically meaning break), and spondylolisthesis (slipped disc). Here is a diagram to show you exatcly what it is:

I was not very happy with this news at all but hopeful when the doctor said this can stabilize over time if I start taking care of myself. He is sending me for physical therapy 2x's a week for 6 weeks to help teach me the exercises I should and should not be doing. He did tell me to stay off my elliptical which really sucks because that is the only exercise machine I own. The main thing I have to do is build my core stregnth, which we all know I need to do, so this just gives me more of a motivating factor. If the pain gets worse then the doctors said the only treatment option would be surgery and that is not what I want to do. So, for those who pray please be in agreement with me that this will stabilize and we can keep the "s" word as far away from me as possible.

Thank you!

Fever

Last night Arianna spiked a fever before bed so I continued to watch her through the night. She woke up alot and was very cranky. Even with the Tylenol her temperature went up to 102 which made for a worried momma. Thankfully when she woke up this morning she wasn't burning up and her temp is at 99.6. I'll keep the Tylenol going until she is back to normal. I checked her pulse ox and heart rate last night and she was satting at 91% and had a heart rate of 125. At least I can check this at home without having to go into the doctor.

Sorry for the lack of picturs lately I still need to go buy batteries for our camera but I promise to get some this week.

Eagle River boy gets his new heart

Shawn Stockwell is a 10-year-old boy who waited a very long time for his new heart. I just have to share this news piece with you all because he is such an amazing young man. He was actually 9-years-old when he got his new heart and on his 10th post transplant day turned 10-years-old! He is still struggling alot and just the other day they almost lost him but he is fighting every single day. If you could add him to your prayer list that would be great.

Trista, Shawn's mother, is the coordinator for the Mended Little Hearts in Alaska and is a remarkable woman. She is such an inspiration to me and I look forward to meeting her and Shawn one day.

***PLEASE SCROLL TO THE BOTTOM AND STOP THE MUSIC SO YOU CAN HEAR***

MMR

Today Arianna had to get her MMR vaccine. She cried so hard that she feel asleep once she got in the car. She feel asleep before we had time to get her lunch. Her arm is so sore and even has a little bruise on it. She hasn't showed any signs of a reaction so I'm really happy to have this behind us. The only shot she'll need at her 2 year check up is her Hep A. The nurse did ask if we've seen cardiology recently and what they thought about this upcoming RSV season. I told her we need to talk to pulmonary so she'll pass that information on to our pediatrician this Friday. Our cardiologist thinks she would be fine if she did get RSV this season but with her pulmonary issues we want to see what her other doc thinks.

I can't believe I'm going to say this but we don't have a doctors appointment for the next 2 months!!! I think Arianna needs to have a repeat renal ultrasound in October then we'll do a follow up visit with Urology but that is it. I can't believe we have finally made it to this point. And we also have cut back her OT sessions to once a month! Our baby girl is doing so well. I am just so thankful for all of you that have prayed for her and followed our journey. It hasn't been easy by far but I feel like I'm finally seeing the light at the end of the tunnel.

I've been keeping very busy with our support group. I even did our first Accredited Visitor Training last week and plan on getting several of our members into the hospital visiting families in the ICU after surgery. Next month I'll be getting really busy with presentations, meetings, and training hospital visitors but it's all worth it.

21 Party!

We were so excited to hear our church was celebrating some birthdays and anniversaries at church last night so we decided to go and let Arianna eat some cake to celebrate her big 2-1 (notice we skipped the 2-0!) I was totally bummed because as soon as we got to church I overheard someone ask the pastor how she was feeling....then heard something about coughing and flu and I was ready to leave. We decided to try and stay through praise and worship but as soon as the pastor started talking she announced she was dealing with a respiratory illness, then the gentleman who was sitting by her keep blowing his nose, and the lady in front of us is the pastors in-laws and she started coughing so we packed up and left. Besides there was tons of people there because of the birthday and anniversary party and ALL the kids were in the sanctuary which meant they would end up in the cry room and we can't have that. So....we decided to take Arianna to Sonic and have an ice cream!!!

Enjoying her yummy vanilla ice cream

This is exactly how I gained all my weight!

I forgot to tell you all that because of this wonderful weight gain Arianna is FINALLY on the charts at the 5th percentile for weight! She is at the 10-25 percentile for her height. As you can tell I am extremely excited about this. She looks so healthy and finally filling out. No rolls or anything but she fills out her size 3 diapers alot better.

With all this exciting news about her weight gain she has slowed way down on her eating because she is getting more teeth. I can't wait till all these teeth are out. I have been really good about taking the paci away from her during the day even though she signs for it all the time. I try to only give it to her during naps and in the car but since her teeth have been bothering her I let her keep it today while we went to the grocery store. I have to say that was the first time she stayed in the cart the entire time. Normally by the time we get to the check out she is crying to get out. I am planning on getting really strick with the paci rules when she turns 2 but in the meantime I'll let her have it if it helps.

Cardiology Appointment

This morning was Arianna's cardiology appointment. It had been 3 months since our last appointment, which is the longest we've ever gone between visits. Arianna had a blast playing in the playroom in the waiting area...yes I let her play in there. This was a first and I have to say I'm very proud of myself for letting her go in there. I still used hand sanitizer like very 3 minutes but she'll just have to deal with that for another year until I can calm down....if that's even possible.

First thing we had to do was a weigh in and the tech was going to put her on the baby scale and I had to tell him she was too big for that and can stand on the big girl scale all by herself. Okay...drumroll please...... Arianna weighs 21 pounds 12 ounces !!!! Of course she had a diaper and her clothes but either way she made her big 2-0!!! We will be celebrating tonight with some yummy cake!

We waited in the room for a very long time and Arianna got bored with all her toys. The nurses were all great and keep bringing her stickers, crayons and pages to color, and stopping in just to say hi. Originally a different cardiologist came in and he took one look at her chart and said, "I've never seen Arianna before." I said, "No, we see Dr. Klewer." I was really looking foward to see our cardiologist. You see we got to a childrens clinic that has multiple PC's and they normally schedule 2 or 3 to come at a time. I always schedule when Dr. Klewer is there and he is really good about coming in to see us. So after I told the other PC that we see Dr. Klewer he asked if I wanted to see him instead and of course I said yes. But the look on Arianna's face when see saw Dr. Klewer was priceless. This man stands over 7 feet tall and Arianna just loves him. He is SO good to her and does everything at her pace. He gives her the stethscope and she puts it right on her chest. She sits very quitly on my lap and just looks at him directly into his eyes with such trust its incredible to watch. I'm so happy this will be her doctor for a very long time.

It has been 9 months since her last echo so we had one today. I have to tell you I was a little worried about how she would do since she is older and doesn't sit still.

Waiting for her echo

My mom brought her Ipod with her and thank goodness because she didn't like that gell on her but the second we put Dora on for her to watch she calmed right down. She did really well and the echo took only 5 minutes.

The results of the echo were great! The very first thing he said was he could see a little bit of the pulmonary valve?!?!? What?!?! This valve was something the surgeon made out of her heart muscle and was told at our last echo that is had completely disappeared, which was expected. I've been praying for a miraculous healing and for God specifically to create a pulmonary valve. The second I heard this news I knew it was the work of His hands. This is just the beginning of good news for my baby girl!!! The rest of what I'm going to say might be confusing but my heart momma's should understand. I just hope I can explain it correctly but I'll give it a shot. She shows mild pulmonary stenosis with a pressure of 1.9 in her pulmonary arteries (normal is 1.5) I did get alot of information today so I hope I got it all right.

I think that about covers it all. Then I started crying when our PC told us we didn't have to come back for 6 MONTHS!!! I have been waiting for the day that we could go 6 months without a cardiology appointment and that day is finally here. I can't believe we don't have to go back till Febuary 2009...that's next year! We get to celebrate her 2nd birthday, Thanksgiving, Christmas, and the New year without having to worry about her heart. Of course, if something comes up we can go in but I just know she will do great and won't need to see anyone. Besides we have an amazing pediatrician who will keep up with us in the meantime.

Finally out of our bed

Arianna has been sleeping in her new BIG girl bed for 6 days....all through the night!!! She wouldn't sleep in a toddler bed so we put the twin mattress in our room and she LOVES it. I am still amazed that it's been 6 nights with her sleeping in her own bed. There is hope that she will be in her own room one day. It was so weird the first night I kept waking up checking to see if she was breathing. I'm so used to getting hit in the face all night that I was a little worried when I didn't feel anything. But she is doing great and we couldn't be happier.

As you can see she got new Dora sheets for her big girl bed. Thanks Mom she loves them!

Having fun at the park!

First time Arianna really got to play at the park. She had a blast! We'll be doing this alot more often. I'm getting better about letting her touch things as long as I have hand sanitizer to use right away. It's been baby steps for me. But you will be happy to hear we did take her to Mc Donalds the other day and even stayed and ate there. Of course no playing in the play area but she had fun sitting and eating her french fries.

I was thinking about you Kathy when I took this picture. You always tell me to take her to the park. :)

**Does anyeone know where I can get a good pair of size 4 shoes with arch support. The ortho reommend this for her flat feet.**