Playing, Playing, and More Playing

I'm up entirely too late! I'm so proud of myself. I'm up past 8:30pm! Everything is going very well here. We took the girls to the zoo yesterday. Bailey rode the pony on the carosel, Aubrey rode a real pony, and they both played in the water. Today, the girls and I went swimming with grandma and grandpa. Grandma actually went swimming! Aubrey seems a bit unsure of the water, however Bailey was so comfortable in the pool she almost fell asleep. Aubrey has been fine in the past when we go swimming, but the last two times she's been extra cautious. I, of course, made sure the girls had sunscreen, but I didn't take care of my ghostly self. So, I'm a lovely shade of red. Keith spent today having some time for himself. He saw Indiana Jones, played video games, and watched basketball. I went swimming, cleaned Bailey's room, and went shopping. I saved $100.00 during this shopping trip! I hope everyone is doing well. Don't forget to take a moment to remember our heros during this Memorial Day.

Quick Update

These past few days have been very nice. We spent Saturday at a friends house in Deland celebrating their little girls first birthday. Sunday, I met a nice young man, his girlfriend and mom. They were very nice, and they enjoyed playing with Bailey.

Bailey is feeling much better. Aubrey is doing very well. Work is also better. I think everything is moving in the right direction.

Well, this is a quick post. I'll add more later.

Trish

Here I Go Again...

Well, I've had a few happy posts. So, I guess it's time for me to start going back to my old self. On Monday Bailey had three shots, then we went to the lab so they could do a blood draw which will be done at least every year. We get there, and wait and wait. Finally I hear Bailey's name and we go to our chair. I recognize the lady that is going to take blood from Bailey and she's the one we had last time that tried forever before asking for help. So, I'm holding Bailey and my mom is sitting next to us. I'm trying to keep Bailey still while this lady is holding her arm still and another lady is digging in her arm trying to find a vein. After hearing her scream and struggle to get free, for what seemed like a lifetime, I decide I'm going to ask them to let her take a break. But before I could ask for a break the lady holding her arm said, "well if she'd keep her head still this would be easier" Hmph! Seriously? Did she just say what I thought she said? So me, deciding to speak up for my child said, "Well, if someone were digging in your arm to find a vein you'd be squirming too". Needless to say, a nice lady named April came in and got blood on the first stick. Thank you April!

Good news, everything came back negative.

So, Tuesday comes along. Bailey's running a fever (102) and I call the doc on call. He says just to watch her and call back if she has trouble keeping her food down. Then, I think I have to be at work at 4:00am, but one of my employees calls at 11:00pm and says he isn't feeling well and can't work his shift. Seriously? This is the third time in 4 days someone has tried or has called in sick. So, off to work I go. 21 hours later, I'm still awake.

Now it's Wednesday. I worked until 12:30pm and I thought I was due for an audit, however the dates were mixed up in my e-mail so it's actually scheduled for tomorrow. Now, I have to be back at work at 4:00am Thursday! Argh! Bailey seems to get worse during the day, so we call her pediatrician and he asks us to bring her in. It's amazing how much worse she got in just 24 hours. So, we're to continue using Tylenol and call him tomorrow morning with an update. Also, I went to my pain management doc today. She is 100% sure that it is related to the problem I've had for several years now. Therefore, the only true cure would be surgery. I have a follow-up with her in six weeks and until then I'm wearing a machine that is supposed to relieve the pain (I'll explain that in another post when I learn more about it). Also, I was given another prescription for pain pills, and an anti-inflammatory.

So, it was 7:30pm and I was driving home and I get a call from work and the girl working says she's sick and needs to go to the hospital. Seriously? You're kidding me right? No, she really feels she needs to go to the hospital. Thankfully I was able to find someone that could work and cover the rest of her shift. Well, it's bedtime now.

Trish

Bailey's Montage

This is a montage of Bailey's first year. Please keep in mind before viewing that some of the pictures are from her open heart surgery and can be a bit graphic. You may not want to view.

Trish

Make an on-line slide show at www.OneTrueMedia.com

My Girls

These are just a few pictures from yesterday. I'll update more later. I didn't realize it would take so long for them to be uploaded.

Trish

Happy Birthday Bailey

My sweet Bailey,

It was one year ago today that I lay in the operating room as you were being brought into this world. It was one year ago today that I saw your beautiful face. It was one year ago today that I heard your first cry. It was one year ago today that Aubrey became a big sister. It was one year ago that I held you for the first time.

I never imagined the doctor would come in and say you could have Down syndrome. I never imagined that I would be dealing with something so difficult during your first few hours of life. I never imagined your little heart wasn't functioning as it should. I never imagined you would go into heart failure within the first 2 weeks of your life. I never imagined I would have a child that had to be air lifted to the nearest children's hospital. I never imagined we would be yo-yoing back and forth to the hospital for the first four months of your life.

I had no clue what Down syndrome really meant. I had no clue you would be able to learn everything everyone else will. I had no clue your heart would be fixed. I had no clue how ignorant I was. I had no clue you would teach me more in one year than I've learned my entire life. I had no clue this letter to you would make me cry.

So now you're a year old. You roll to get where you want to go. You express what you want with sounds (sometimes not the happiest sounds). You are my inspiration. You are my hero. I'm so thankful I have you in my life.

I promise to do all I can to protect you. I promise to do all I can the help you accomplish your goals. I promise to care for you as long as you need me. I promise to let you be independent when you're ready. I promise to fight for you when you aren't being given the opportunities you deserve.

I know I'm not perfect, but I'll do all I can for you and your sister.

Love,

Mommy

Happy Birthday and Nurse Appreciation Day

First, I would like to say Happy Birthday to my sister and grandmother! Happy Birthday! I love you guys! Kelli, you are an amazing sister and have be so supportive each and every day. I truly appreciate you!

Second, today is Nurse Appreciation Day. So it's another reason to celebrate. During Bailey's first year of life she's had more than her share of nurses, and each contributed something to the amazing outcome and recovery she has made. Whether it's a nurse in the doctors office, in the PICU, in CICU, or in outpatient surgery. They have all been amazing, and we appreciate everything they have done for Bailey.

Tomorrow will be Bailey's first birthday! It is going to be such an exciting day and we have so much to celebrate! Also, she's having her OPMS (Swallow Study) tomorrow. Please remember her during this as we're praying that she isn't aspirating. We've started feeding her solids and I know if they determine she's aspirating that will come to an end.

Today was my appointment with the doctor to follow-up on some problems I've had. I knew I would have to make a difficult decision to treat this issue, but it's still not something I'm looking forward to. It's hard to determine what you want in the future especially when I still feel so young. So, I have an appointment with pain management next week and hopefully that will give me a temporary fix.

Congratulations to Karyn and Chuck on the birth of their beautiful little boy, Jacob. I can't wait to meet him. He looks absolutely adorable.

Trish

The Power of One

"There are children all over the world in need of a family, love, and basic care. Many of these children have disabilities and are placed in mental institutions at the age of 4 or 5. In these places the children rarely live past the age of 10 and most die within the first year. Will you help to spread the word to raise funds and families for orphans with disabilities? Please visit Reece's Rainbow and see how your donation- however large or small- can help a child find a family. Look a little harder and you just might find the calling for one of them to be your own.

If finances aren't a way you can help, please look across their photos and say a prayer that each one will find their forever family soon. Reece's Rainbow is an International Down Syndrome Orphan Ministry which also advocates for orphans with other disabilites across the globe. Please "grab this button" and post it with a message to your own readers as well. It starts with ONE, but then grows exponentially. You never know, your own post may be one that finds a family for one of these precious children."


Grab This Button