Tuesday, April 29, 2008

Being Chatty

So, I always think I can be better. A better mom, a better wife, a better daughter, a better sister, a better friend. So, as I'm talking to one of Bailey's therapists on the phone she decides to tell me that I should make more of an effort to be at one of Bailey's therapies. As if I cared more I would make a point to be at her therapies. That just killed me. I want to be there more for her. I want to be at her appointments. I'm already disappointed that I couldn't make her cardiology appointment and had to reschedule. I also have to work and keep my job. Does she really think I'm sitting at home eating bonbons while my parents take Bailey to therapy? Her reason for wanting me there is so she can show me how to feed Bailey. I totally understand that, but that is why my mom is taking her. If I want any detail or example of activities done in therapy my mom is very detailed in her explanations. So, enough of my whiney post.

The girls are doing great! Aubrey had a few loud moments tonight, but we worked on signing and hopefully Bailey will be learning soon too! Bailey fell asleep in my arms tonight... at 7pm! That's a bit early for her. She's usually an 8:00 kinda girl. I guess therapy wore her out today. So now, Keith and I are watching American Idol, and I'm sure he can't wait for it to be over so he can watch Basketball. I'll be leaving in a few minutes to do a security inspection at work. So, I must go get ready.


Monday, April 28, 2008

Almost a Year

In just 9 days our little girl will be one. This past year has been one of strength building. It's been very challenging and yet so rewarding. As I sat here one year ago, getting the nursery ready, spending the last few only child days with Aubrey, I never imagined our World would be changed as significantly as it has. Now, I look at our beautiful little girl and I'm so proud of her. She is so determined and works so hard for things we take for granted.

I cancelled her appointment today with the cardiologist. We're going to reschedule it for sometime later in the month. The appointment crept up on me. I need a calendar! Or a replacement for my misplaced planner! I'm lost without it.


Surprises and Thanks

Aren't children just amazing? I love every minute of my day that I get to spend with our little girls. Bailey was just wonderful today. Aubrey was just wonderful today, too. I spent the morning with the girls at church, then Keith had Bailey the rest of the day and I spent some time with Aubrey. We went to the park and she skated for a while, then played on the playground. Then, we went to Lake Morton to see the beautiful swans. After that it was dinner time so we had dinner then she and I went to the grocery store where she managed to remove her skirt and panties in the bakery. Quite an embarrassment! She, of course, wasn't embarrassed at all!

Bailey has an appointment tomorrow with the cardiologist in Orlando. I don't believe there are any issues, but it's always a bit stressful for me when she sees him. Unfortunately, I have to work tomorrow and I'm not as flexible as I was before the new job, so I won't make this appointment. Thankfully, my parents are able to jump in and take care of her appointments. I'm very fortunate and thankful that I have them. Hopefully they realize how appreciated they are. Maybe things will become more flexible for me and I won't depend on them so much to take her to her appointments. She has at least 2 days of appointments each week, and often she has more.


Saturday, April 26, 2008

Quick Update

This one will be quick. Aubrey is screaming because she's awake. We had a great day today. I took the girls to the park for a pet fair or festival, I can't remember what it was called. We so cute dogs, big dogs, small dogs, foofoo dogs, horses, and snakes. So much fun! Aubrey rode a pony, and I believe that was the highlight of her month. She loves to ride.


Tuesday, April 22, 2008

Let's Celebrate!

Bailey has a tooth! Yay! She loves bananas! She loves green beans! She loves cereal! We're one more step closer to losing the tube! Sorry for all the exclamation marks!


Monday, April 21, 2008

Cody Lee Robinson
December 4, 1995 - April 20, 2008

Please keep this young mans family in your prayers.


Sunday, April 20, 2008

On Friday, I spent most of the day working and that night I spent a few hours finding some last minute items for the Down syndrome Association of Polk rummage sale. The sale was a success. I believe we raised several hundred dollars for our group. That money will go toward events and helping other families.

Later that day I thought it was my turn for an ER trip. Everything is okay, but I have to follow up with my doctor. This problem has been going on for several months, and I've had several tests. Other than a problem I'm already aware of, nothing else has shown up. So, needless to say that trip and $100.00 copay was a waste. Although I was reminded that I can take pain medication and I received a new prescription. However, I'd much rather be treated than given something to relieve the pain.

Did you see the new pics to the side of this blog of my little girls? Aren't they cute? I love them so much!


Cody Needs Your Prayers

Here is the link to Cody's blog. I mentioned a few weeks ago that his cancer had spread to his liver and lungs. Please keep his family in your prayers, as things are not looking good for this young man. I know this has to be a difficult time for his family.


Click visit and his page name is codylee

Wednesday, April 16, 2008

I'm so Fortunate

I have two of the most amazing little girls. Aubrey is the best big sister and daughter ever! We're "trying" to play Candy Land. It seems to be helping with color recognition, but she doesn't understand taking turns. Aubrey has been SO happy lately. She was even in a good mood this morning when I woke her at 6:00am.

My grandmother is out of the hospital, but I believe they are going to be looking at nursing homes for her. I think she has a nurse helping her now until something can be figured out.


Sunday, April 13, 2008

D is for Down syndrome

Click on the link to view the montage.


View this montage created at One True Media
D is for Down syndrome

High Expectations

Sometimes I wonder if we expect too much from a 2 year old. Is it too much to ask her to sit at the table until everyone is finished with dinner? Is it too much to ask her not to sit on her little sister? Is it too much to expect her to keep her voice down when indoors? Is it too much to expect her to eat what we're eating, instead of pizza? She's just so beautiful and wonderful. If she would let me hold her and love on her all day I would. I'm very blessed to have two amazing little girls in my life.

Last night we visited Aunt Kelli, Mike, and Peyton in Orlando. They spent a week at Universal Studios, and last night was their last night in town. We had dinner at Margaritaville then arrived at home later that night. Today, the girls and I went to church then we visited my grandmother in the hospital. She was admitted Friday afternoon. She's been very weak over the past week and now, to complicate things even more, she has a kidney infection. Her heartbeat was irregular Friday night and they thought they would have to move her to a different area of the hospital, but ended up making the decision to keep her where she is.

Now, the girls are sleeping so I have a little free time. I posted last week about a little girl named Emma. Here's the link to her page if any of you are interested in reading about her and her journey.

Well I hear "Mommy" coming from Aubrey's bedroom, so I guess my rest has come to an end.


Wednesday, April 9, 2008

These past few weeks have been full of sadness, death, and illness. So, needless to say, this is a depressing post that you may not be interested in reading.

The daughter of Barnes and Noble CEO passed away on Monday. She was a young woman that spent the past year fighting Leukemia. She also had Down syndrome, and as you can see in this post from her blog, she is an inspiration for all people with disabilities.

It is with deep sadness that we have to tell you of the passing of Melissa Ann Riggio, 20-year old daughter of our CEO Steve and his wife, Laura, and sister to Laura and Christina. Melissa passed away peacefully this morning, Monday, April 7, at 6:00 a.m. at University Hospital of Columbia and Cornell in Manhattan. She was surrounded by her parents, sisters, aunts and uncles, and cousins. There will be a funeral service on Friday in New Jersey. Details will be forthcoming. As so many of you know, Melissa was diagnosed with leukemia last summer and since that time she fought long and hard to overcome the disease.

Last June, she graduated from Bernards High School in Bernardsville, New Jersey, where she was crowned Prom Queen. Melissa was so grateful to the many people who reached out to offer their support by donating blood, platelets, and sending cards and letters. Through it all, Melissa remained strong and optimistic. She was an inspiration to everyone who had the opportunity to know her.

Although Melissa was born with Down Syndrome, she lived a full and extraordinary life. Melissa worked at the YMCA in Bernardsville and recently talked about entering a post secondary program so that she could become a counselor at the YMCA. She loved to read and listen to music, and she loved to write. Melissa was a poet and songwriter. Melissa was taking voice, drama, and dance lessons as she also aspired to become a singer one day. Some of Melissa’s songs were recorded by singer/songwriter, Rachel Fuller. In her song entitled, "The Ring," Melissa expresses her thoughts on being a woman and her purpose:

I’m in the Ring outside
I’m following my belief
I’m looking at the sky I saw
God following my heart
I’m an ordinary woman
The Ring is falling down my way
The wind is blowing me away
The Ring is falling down, Down my way
The wind is blowing me away
And so I came back to The center of the Ring
Am I just a broken angel?
God has sent me here to heal
To be an ordinary woman.

Something that really stands out from her writing is "God has sent me here to heal". That is so true. I think on May 7, 2007 the lives of everyone around us changed when Bailey was born. She's made me look at life in a different way, other people in a different way, and look at myself in a different way. http://www.nationalgeographic.com/ngkids/0612/ This is an article Melissa did for National Geographic.

Then there's Cody, who within the past two weeks found out his Cancer has spread to his lungs and liver. He has Ewing's Sarcoma and has been through a horrible chemo regimen that has made him so sick. His mom was informed of research that is being done and she's been told that Cody meets the requirements. His mom posted on her blog today that he was terribly sick, vomiting and tired, and it is so difficult to be unable to help.

Then there's Meredith and Michael. These are two amazing people Keith and I had the privilege of meeting at the Down syndrome conference last year. They have just adopted two adorable children with Down syndrome. The little girl they adopted, Emma, has an unrepaired AV Canal (the defect Bailey had repaired when she was 4 months old). Emma had a cardiac cath this week and the cardiologist has determined that it is in Emma's best interest not to have her heart repaired. As Meredith says, this is just one opinion and they will be talking to the surgeon and their local cardiologist. As of now, the doctor feels it is best to continue medicating Emma and hoping for the best life span and quality of life.

I guess before Bailey I lived my life with such ignorance. I've met so many people since we were blessed with Bailey, and with these people come different obstacles they have had to face in their lives. It makes all the times I complained of a little headache, cold, or stomach pains seem so silly.

Please keep all these families in your prayers. Also, some personal information. My mother-in-laws mom passed away last week. Please keep Molly and her family in your prayers. They've been through such a difficult time already with her mothers illness. Also, my dad has been going through so much lately. As many of you know, he's been having some undiagnosed medical problems and once again he seems to have hit a wall. Just when you think you'll get some news, whether good or bad, you find out the tests are inconclusive. It's so difficult watching him go through all this. I think he's had every possible test and procedure, I just can't see them having anything other tests to perform.

Well, enough here. Thanks to those that read this entire post. Sorry for such a downer. I've just had all these people floating around in my head and I thought a few extra prayers would help.


Sunday, April 6, 2008

Things are Good

Well Thursday was my last update, and what I thought was a full day wouldn't have been if I didn't make a trip on the wrong day. I thought I had something planned in Maitland that afternoon, so I took a trip there. When I arrived there was nobody to be found. Thankfully, mom was able to access my e-mail and see that I had the dates mixed up, by two weeks. It seems I'm mixing things up like that all too often. Then, my training required me to work third shift, so Thursday was that night. It started off rocky. I could see that the person that was supposed to be showing me some of the third shift duties didn't plan on doing that. Finally, after figuring things out on my own and showing her that I have half a brain (well, besides the fact that I can't keep my schudule/appointments straight) she decided to be a bit helpful and things ended up being okay. We were fairly busy which made the time go much faster that I expected. The last two hours were rough because I hit that 24 hour awake mark.

Friday I received a call that our Montero was ready to be picked up. So, when Keith finished work we went to Tampa to pick it up. Well, we had to get a new tag and a certified check before picking up the car. So, now were finally back to being a two car family and not having to borrow a car.

Bailey and Aubrey are both doing very well. They're both asleep right now. We went to the park tonight and Aubrey flew her new Curious George kite, with the assistance of her daddy.

I hope everyone is doing well.


Thursday, April 3, 2008

I Won't Ramble This Time

Well finally, it's morning time and I'm awake and not at work. I'm required to work one 3rd shift during my training, so tonight will be that night. I hope I'm able to stay awake until 8:00am tomorrow. I'm sure I'll be exhausted, but it's just one night.

Bailey had her ears checked on Tuesday. Everything was great. It seems she is hearing fine. They have recommended another test to test her 8th nerve and up. I don't know much about this test because I haven't had time to do research. The doctor said she did very well hearing voices, but she didn't do as well hearing tones. This is probably normal for her, and she'll be just fine. The doctor said it could just be due to her developmental delays, but they just want to do the tests to be sure. Oh, Bailey also got her first bite from another child yesterday. (Sorry mom and dad, I had to share) She's okay though, and it just looks like a really bad insect bite. It made her day at Chuck E. Cheese's come to a tearful end.

Aubrey is still an active two year old. She still amazes me every day. We are having problems with her telling us what to do. She says, "Mommy, calm down", "Mommy, focus". Now, the power just went out and Aubrey is saying... "No, come on TV. I want to watch Mickey Mouse. Goodness gracious, the TV is bad mommy, the TV is bad. Oh my!"

Well, I must go now. I have a busy day planned.


Wednesday, April 2, 2008

Take Twenty

Well, I've typed three messages, but I deleted them all. I wanted to talk about Bailey's appointment today, I wanted to talk about a friend of a friend that is losing their child to Cancer, I wanted to talk about how there's always someone out there who has it worse. But, I erased every message because none of it sounded right. So, here I am at midnight, needing to wake up in just a few hours for work, and rambling. I'll update on appointments tomorrow. Everything is going good. Molly, you and your family are in our prayers.