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.