We got a wonderful report from the cardiologist today! They did an echo and everything looked the same. We will go back in August to see our cardiologist. At this point, they are ruling out her low sats as being a heart issue and throwing it back on those lungs. We see pulmonary in August so we will talk more about it then unless she gets worse. As of now her sats are back in the high 90's and she is doing well. She does have a fever that we are able to control with Tylenol but that is her only symptom.

I just have to brag about how wonderful Arianna did during her echo. This time I actually practiced the echo yesterday with her so I was able to explain to her what was going to happen. It was kind of sad because the whole time she kept saying, "no boo boo" and gave us a worried look. That breaks my heart that she is at the age to understand what tests hurt.

Since we are talking about Arianna's understanding I just have to comment about something else real quick. Last night we were laying in bed trying to wind down and I put the tv on Discovery Health. It was about a little girl with a genetic condition and she was going to see her doctor. I noticed Arianna got really still and was actually watching the tv. I decided to take this as an opportunity to show her that other little girls have to go see the doctors too and get all the same measurements (height, weight, etc). Normally she is shy about getting her weight and height checked, well not today. I was reminding her about the little girl we saw on tv that did all the same things and she just shook her head yes with a big smile on her face, but she still freaked out about the blood pressure cuff so they didn't do that one on her.

This afternoon we did some running around and by the time we got home Arianna's fever was creeping back up so we gave her some Tylenol and she took an hour nap. Of course that hour nap meant she was up till midnight. That is the reason I don't let her nap but my baby wasn't feeling all that great so I couldn't deny her some beauty sleep.

We did go out to eat for dinner tonight for the first time since October. I was very hesitant about it since we just had a confirmed case of the swine flu here in Arizona, but there was hardly any people at the restaurant and they stuck us in the back corner.

Sorry if I'm all over the place in this post. It's pretty late and my brain is only partially functioning.

Ramblings of a mother

I received the strangest message today from another clinic (one we have seen other specialists at including cardiology before surgery) saying Arianna has a cardiology appointment at their clinic on Thursday. I'm hoping this is because HER cardiologist is working their but I'll give them a call first thing in the morning to figure this out. If not, then we are headed to the other clinic to see a different cardiologist.

I wish I can say I'm not concerned anymore but I just layed Arianna down to sleep and checked her sats and she was in the mid to low 80's. Definitely not what my girl should be at. I put her on 1 liter of oxygen and will keep an eye on her very closely through the night. She had been fine all day, sats in the high 90's and actually eating a little bit ....so what gives?

Here's she is making blueberry pancakes for breakfast.

I will see what cardiologist says and then be putting a call into the pulmonologist. It's so frustrating because these two specialists always put everything off on each other. The heart guy will say its a lung problem, and the lung guy will say its a heart problem. It's so frustrating!!!

Who knows, maybe she really needs to get that next lung CT done that we've been putting off. Her last scan was already a year ago. Wow...time sure flys by.

I will let you all know if we go see cardiology. Have a good night!

The sickies have joined our house but it's just me who is sick, thankfully. I have no idea how Arianna has not picked this up, but I'm not about to start complaining. I'm excited to see immunology this year if she is doing this good. :)

I've been feeling yucky for the past few days. It's just a head cold and luckily no fever. Hopefully it passes soon.

I just wanted you all to know Arianna is doing amazing. Ever since the other night she has been satting in the high 90's and hasn't needed any oxygen. I feel a little silly going to see the cardiologist this week now, but I think we'll go just to be on the safe side.

Hope you all have a wonderful week!

What's going on?

This is the question that has all of us stumped right now.



In my last post I mentioned Arianna having lower than normal oxygen saturations. Well I've kept a close eye on her and decided yesterday she needed to be seen by the pediatrician.



Our wonderful pediatrician wasn't there so we had to see someone else. :( I was a little unsure about seeing this doctor because he was our pediatrician before we switched and the reason I switched was because he didn't take things very seriously before when she had low sats which ultimately landed her in the ER for respiratory distress.



Let me start out with the good news. Arianna gained 1 pound in just 1 month! I don't think she has every gained weight like that. So she is officially 25 pounds! :)



I gave her recent history to the doctor and he listened to her heart and lungs. Lungs were clear so there isn't any pneumonia or chest infection to be concerned about. However, he said her murmur sounded a little harsher than what was dictated last month. Okay, now I'm trying not to get too worked up about that because he hasn't listened to her murmur in about a year.



He is concerned about her lower saturation's and thinks this she needs to be seen by cardiology next week. Unfortunately, our cardiologist will not be doing clinic for another 3 weeks so we will have to see someone else. We are scheduled to go in Wednesday morning so please keep Arianna in your prayers.



He also said we can give her oxygen if she is satting in the low 90's or 80's. So last night I gave her some O2 for a few hours. Right now she is borderline needing oxygen as well. She even has a slightly elevated temp at 99.7. What is going on?!?!

I've noticed she is a little more mellow today and sitting down more. I know I shouldn't get all worked up but as I'm typing all this out I'm realizing I am kind of freaking out. I'm not ready for her next heart surgery yet. Okay, I better not even go down that road of thinking.



I will leave you all with this cute bath picture of Arianna my mom was able to capture the other night.

***UPDATE 5pm***

After I posted Ari needed some O2 and she decided to take a 2 hour nap, which I happily joined her. :)

When she woke up I took the O2 off and she was satting at 87. I decided despite what the pediatrician said, to go ahead and give her the Albuterol inhaler and sure enough her sats jumped up to the high 90's. So I guess this is a lung thing. I'll keep up the Albuterol and hopefully that will keep her satting high. We will still go see the cardiologist next week just to be on the safe side.

Well I am not feeling in the mood to cook at all so looks like it's pizza night!!!

Sunday

Sunday started out way to early for me. Arianna decided to wake up at 6:30 and was not about to go back to sleep. I got up and made a yummy breakfast pizza. First time I've made this and I'm hooked. Then I got to work out and get ready all before 10am. Wow...that's pretty good for me. I even was able to attend church and listen to a wonderful sermon.

After church we headed out to the park. Can you believe it was 90 degrees here today. Yuck! Just wait till summer when its in the 110's. On my on my.

As soon as we got to the park Arianna ran straight for the playground. I put her on the big kid swing all by herself for the very first time.

After lunch we did a little fishing....
but didn't catch anything so Arianna decided to feed the ducks instead.

She was completely tired by the time we got home but somehow managed to keep her awake till 7pm. She woke up around 9pm crying and kicking in pain so out came the ibuprofen.

On a different subject, I've been monitoring her O2 sats the past week and she has been running a little lower than normal. She does not have a cold or anything so I'm a little conserned it might be heart related. If she has a really active day she gets kind of mellow around 5pm and her sats will be 90-92. That is very concerning to me. We don't see her cardiologist until August but if this keeps up I might give him a call.

Now its 1am and I still can't sleep. What is wrong with me? Okay, don't answer that.

Children's Heart

A new reality series, by Samaritan's Purse, dealing with children with CHDs is premiering this week. For those that have Daystar, I know it will be on that network. I'm not sure what other networks are carrying this series. This is a link to the website about this series...www.childrensheart.tv

We got the orthotic inserts!

This is what Arianna got today!

I have no idea what type they are but these are suppose to help her ankle pronation and flat feet and HOPEFULLY the knee pain. They are a hard mold that will hopefully shape her foot over time. We have to break her into them so it's an hour a day, then we add another hour, etc, etc. Arianna didn't seem to be bothered by them at all which was good. The guy from Hanger really liked her shoes so looks like we won't be getting any stylish shoes any time soon. There is just enough room for her foot and the insert and that is the most important thing.

If these don't help the knee pain then I have no idea what we'll do. She was complaining about her knees all day today which breaks my heart. Ibuprofen is a regular in our household now.

On another subject, we have put Arianna's bed back in our room because she is still sleeping in our bed and it's getting rather crowded. I am happy to say she has slept in her bed all night for the past 3 nights. One day when she is ready we will try the big girl room out again but I'm in no rush. I actually sleep better with her in our room. :)

Oh yeah, I can't believe I forgot this. We took Arianna to eat at Quizno's after we got her orthotics today. This was the first time since October we ate out somewhere. Okay, it's not a fancy restaurant but it felt SO good to be doing something normal and outside the house as a family. I was completely paranoid the entire time but it was still nice. She is not eating very well so only ate cheetos.

Then we came home and had our OT come over and work on some eating with Arianna. She is not eating very good at all lately but of course she ate like a champ for Janet. Agh..this girl made me look like a lier. Our OT gave us some really cool cookbooks for preschoolers that we can borrow. The authors are Mollie Katzen and Ann Henderson. The two books we have are "Pretend Soup" and "Salad People." It is so cute cause it gives you the recipe and tips for grown ups and then goes through a step by step pictorial for the kids to follow along. Our hopes are that Arianna will enjoy the preparing of food and want to eat more. She also thought it would be cute if we got aprons and hats so she knows its time to cook THEN EAT when we pull them out. You will not see any pictures of me in those hats so you can stop thinking about it. :)

That's about it for tonight. I have more to share tomorrow.

Happy Easter!

Okay, I know I'm a little late but I finally got some pictures to share. I still have pictures from the zoo to share but I'll post those during the week.

Hope you all had a wonderful Easter!

Photo and video editing at www.OneTrueMedia.com

Preschool?

Arianna had speech therapy yesterday and we are happy to hear our ST thinks she may no longer need speech if she keeps progressing this way. She is saying 2 to 3 word sentences regularly.

Then we had our early interventionist come today and do our annual assessment/goals to prepare for preschool. Thanks right you read that correctly. My baby is going to be 3 in November and we're looking into getting her an at home preschool teacher. This program through TUSD is called Direct LINK. Her therapists are going to do her standardized testing on her in June and hopefully she qualifies for the program. So keep those fingers crossed!

Not sure if she will still need therapists when she turns 3 but if she does we'll try to get her current therapists approved through our insurance or see what TUSD can provide.

Arianna is doing great! Her brother has been here the past 3 days since he is on spring break and Arianna is loving every minute of it.

We are still waiting for her inserts to come in but hopefully we'll hear something next week.

Thanks for checking in on us!

Holland Moms

At the new church I attended this past Sunday I snagged a book with a list of different groups who meet outside of church. I came across a group called, "Holland Moms" and immediately knew what kind of group this was. Some of you might have already read this, but for those who have not please read this poem.

WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This group is filled with women just like myself who were expecting to go on that trip to Italy but ended up in Holland.

I was a little unsure about going since it was at a restaurant but sometimes you have to just take that leap of faith and do things that are outside your comfort zone. Well I'm so glad I did because I had the best time. We stayed for 2 1/2 hours and the time literally flew by. They meet once a month for dinner to talk about whatever is going on in your life. We talked about feedings, surgeries, doctors, therapy, respite care, you name it. My favorite thing about this group of women is they are all Chrisitian women. I am already excited to go again next month! :) Plus, getting out of the house for some me time felt SO GOOD!

Good news!

We went to see Arianna's orthopedist first this afternoon and he was surprised to see her back so soon. I gave him the run down of what's been going on and within a minute we had like 5 people in our room plus 4 more standing outside the doorway. He was twisting her legs in all these positions that looked really painful but she didn't even care. He made comments about how weird her legs were and that bothered me. He could of kept those comments to himself. He keep going on and on about it telling everyone how weird it is that she bends like this, etc, etc. I wanted to tell him to shut up....but I didn't.

His verdict is that she only needs inserts for her shoes to help with the pronation and flat feet. He believes the knee pain is coming from all these things combined. The x-rays of her knees looked good, but I won't believe that until I get the report myself which I forgot to get today. Darn it! The man from Hanger came in and talked to us quickly and said her inserts will be ready in a few days. :) Hopefully this will give her some relief.

Then the orthopedist said something that really upset me. He was looking at Arianna and said, "She definitely will need surgery of some kind I'm just not sure what kind though." I asked what he meant. Was it because of her scoliosis because I know that is a possibility but later down the road. He said "No, for either her back or knees but I'm not sure which." He then said her knee exam looks normal. Okay...isn't that a little contradicting? I don't know what to think. I guess I'll be getting his report as well to see if he comments more about this in his report.

After that appointment we went upstairs to see Arianna's primary care doctor. I explained what was said at the ortho appointment and she was also confused about the surgery comment. She is going to look over the report when it's transcribed to see if there is something else going on he is not telling us.

The blood work came back.....NORMAL!!!! I am so excited! Her bone marrow is producing red blood cells, no rheumatoid arthritis, no anemia. What a wonderful way to end our afternoon at the doctors.