Tuesday, November 17, 2009

It Didn't Last Long

I went 4 days without feeling sick... and this morning, I became sick again! We've finally told our parents, and now we're free to share this news. So now, my blog is reopened to the public. I didn't post much over the past few weeks, but what I did post couldn't be shared until now.


Friday, November 13, 2009

FIrst of Many

Today, was hopefully the first of many OB appointments. I arrived at Watson Clinic, and visited with the financial counselor to discuss what my insurance company will be responsible for and what I will be responsible for. This is the first child we'll be having with this company and I was impressed with their coverage.

Then I headed to the 5th floor for my appointment. I checked in and waited 30 minutes. Not too bad. I entered the exam room, and weighed in. I actually weigh more at the beginning of this pregnancy than the end of the other pregnancies. Hmph! They checked my blood pressure, which was normal, and asked me to put on this cute 'lil gown.

Soon after, the doctor arrived. He reviewed my questionnaire, and began his exam. In addition to the prenatal exam, I also had my yearly. Somehow I missed that appointment a few months ago. Which, if you ask my mom, isn't very surprising. All seems okay. Then, he started the ultrasound. I think I held my breath the entire time. I've had 3 pregnancies, one of which resulted in a miscarriage during the first trimester. So, needless to say, I'm a little concerned. We saw the sac, but he was unable to find anything inside. I didn't panic... yet. He asked me to empty my bladder and meet him across the hall so he could use a different machine.

I think I was still holding my breath when I arrived across the hall. My OB began this ultrasound, and we were able to see a little heartbeat! Whew! I felt so much relief. He is measuring 8 days smaller that he should be, but Dr. B said this could be due to not ovulating like the average person. So, now my due date isn't June
30th. It will be July 7th (Happy Birthday Keith!).

After the ultrasound I went to Dr. B's office to discuss the appointment, and go into more detail about my history. We discussed prenatal screening, and also discussed some medical issues I have. We have decided to do prenatal screening for Trisomy 18 and 21. Anything I do will be non-invasive. I WILL NOT risk this baby! Dr. B understands that termination isn't an option for our family. We had a slightly uncomfortable conversation, but I feel it ended well. I made my opinions very clear, and I think he respects that.

We also discussed delivery options. Unfortunatly, my only option is a cesarean. Even worse, I may have to deliver under general anesthesia. This makes me so sad. I have an enlarged heart, and if the mid-pregnancy echo shows my condition has worsened, I will have no choice but to deliver under general anesthesia. Which will mean, Keith won't be in the room for delivery, and I will be sound asleep when this little one joins us.


Thursday, November 12, 2009

Time Moves Too Fast

This past month has been crazy!

A few months ago, Keith and I decided we'd like to have another child. For those of you on Facebook you may remember me making a comment or two about how it would be great to have another child. We were successful! We will be having another June baby. This has been a very happy and challenging time for us. We are so happy to be adding another member to our family, but this pregnancy has already been a challenge.

First, I get a survey from the doctors office. The survey asks if Keith or I has a relative with Down syndrome, then in parenthesis it says mongoloidism. How horrible is that??? I just about died. I couldn't believe that word is still being used. We're using the same doctors office we used with our other pregnancies, but I guess in the past I didn't pay attention to how that survey was worded.

Then, I have been sick. SO SICK! It just started with nausea, then turned to diarrhea. The doctor said I have a stomach virus that has been going around, but this has lasted over a week. I'm sure I'm dehydrated. My skin is dry, I'm thirsty all the time, and my mouth is dry. I have an appointment tomorrow, so hopefully everything will be okay.

I've also been very injury prone these past few weeks. First, I dropped something on my foot at work, which will probably result in toenail loss. Then, when trying to rush to the restroom I lost my balance, and fell onto the table. The force left a huge bruise on my side, and damage to my ribs. I took a trip to the ER after that injury. I was having a difficult time breathing, and we were concerned for the baby. Thankfully, my lungs were clear, but they did not check the baby.

I have an OB appointment tomorrow. I'll have to explain the bruise on my toe, the large bruise on my side, the terrible pain in my chest, and I pray this baby is okay. He has already been exposed to radiation (we protected him), which terrifies me. Thankfully, I've been able to tolerate the pain, and avoided medication. Bedtime is very difficult because I can't find a comfortable position, but I can deal with it. This little guy is worth every bit of pain I'm in.


Saturday, October 17, 2009

Bailey Part 8

These past two years have been a learning experience. I feel Bailey has taught me so much, and given me the opportunity to look at life much differently than I did before she was born. When we first received Bailey's diagnosis, I couldn't imagine the possibilities. All I looked at were her limitations. She wouldn't walk, talk, recognize her family. She would just lay around, and need constant supervision and support.

I was terribly mistaken. Bailey cruises, talks, signs, and recognizes her family, friends, and teachers. Bailey is very active, and yes she needs constant supervision, not because she's unable to care for herself, but because she gets into EVERYTHING! I love it! She keeps me on my toes, but I wouldn't have it any other way.

I also learned a lot from my new friends. I learned to fight like I've never fought before, and that Bailey deserves more than I was led to believe she does. I also learned what true friendship is, and I wouldn't trade that friendship for anything.

I couldn't imagine life without Bailey. I am so sad to think that babies like her are aborted, and people are missing out on the opportunity to learn so much about life. Plus, there are so many families waiting to adopt children like Bailey. I see I bright future for Bailey, and I thank all who have worked so hard to advocate for persons with Down syndrome. These people have allowed children like Bailey to live their lives to the fullest potential.


Bailey Part 7

When Bailey was born I felt so lonely. Nobody understood what we were going through. Everyone said, it's okay, and she'll be loved no matter what. But, Bailey wasn't the child she was supposed to be. How would our family and friends understand the grief I felt? I tried to have a happy face when people were around. I tried to act like Bailey was a typical child, but she wasn't. At that time I thought the only typical thing was that she pooped. Everything else was different. She didn't eat like other babies, and she slept much more than a typical baby.

Then I found Down syndrome message boards on the internet. The first person to reach out to me was a lady named Dawn. Dawn is amazing. She shared her fears and concerns with me. She shared the challenges she had faced with her son, and made me feel comfortable to talk about how I felt. I didn't feel ashamed talking to her, and never felt like I was being judged. Dawn visited us many times during our stays at St. Joe's. She would call almost daily to check on Bailey, and also took time to listen to me as I whined about EVERYTHING. Dawn also invited us to join her at a meeting one night, and it was such a relief to meet other parents like us and see other children like Bailey. I finally felt like I belonged somewhere.

Then, I met Beverly. Beverly's office was at a place where Aubrey participated in play groups and dance class. I remember my mom mentioning Beverly to me, and saying she had information for me. I had time one morning to go to Aubrey's play group. I was sitting there watching Aubrey play when this lady approached me. It was Beverly. Beverly had a huge bag full of information on Down syndrome. It had books, pamphlets, and information on services available to Bailey. Beverly has an adult son with Down syndrome who is an inspiration. That first time I met Beverly she described her son. As she described his accomplishments you could see the pride she had for him, and after meeting him I totally understand what she was talking about. He is truly amazing, and meeting him gave me so much hope for Bailey's future.

In August of 2007, just 3 months after Bailey's birth, we went to the Florida Down Syndrome Conference. Keith and I absorbed the information given to us, and sat quietly to ourselves at lunch. I saw groups of people sitting around, and I wanted so bad to talk to them. But, I couldn't think of what to say. Then Keith started describing Bailey to someone, and a lady in the group next to us spoke up and asked if I had been on a website called Downsyn.com, because she recognized our story. I confirmed that I had been on there and she introduced me to the people sitting with her. There was one family who matched ours perfectly. They had a typical little girl Aubrey's age, they had a daughter with Down syndrome who was Bailey's age, and her daughter had the same heart defect as Bailey. Janice was the mom's name and she and I began talking. We realized our daughters would be having heart surgery at the same hospital and we exchanged contact information. Janice and I continued to communicate through e-mail and on message boards. We were already at St. Joe's due to complications with Bailey, when Janice's daughter was admitted to St. Joe's for her surgery. We learned a lot from Janice and her family because their surgery was just a few weeks before Bailey's. We prayed for each others families, and became good friends. Janice has helped me so much. Our little girls are so close in age, that it has been very helpful to compare "notes" with Janice. It also helps to have a friend to brag about accomplishments to, and to get advice on challenges. It's unfortunate we live across the state from each other, but we'll hopefully start meeting up more often.

Locally I heard about a lady beginning to form a Polk County Down syndrome group. I sent my information to her, and she quickly replied with meeting dates. We went to our first meeting. I felt a little intimidated when first walking in. We entered the room, and had Bailey with us. She had her feeding tube, oxygen, and pulse ox. When I looked at the other children everyone seemed so healthy. There was hope. Karyn, welcomed us to the group and I quickly felt comfortable and was no longer intimidated. Everyone was so interested in learning about Bailey, and they had similar stories to share with us. It was nice to hear that other people had very similar experiences to us. Karyn and I have formed a lifelong friendship. She, her husband, and children are amazing, and I consider myself lucky to have met them.

At the Polk County meeting was another outstanding mom. We met Rhonda and her family when we arrived. Rhonda's daughter is a few years older than Bailey. She is the person who really made me feel comfortable about the decision to enroll Bailey in Achievement Academy. Rhonda's daughter is beautiful. Aubrey's favorite part about our meetings is seeing Rhonda's little girl and playing with her. She often says that Rhonda's daughter is her best friend. Rhonda fights for everything her daughter deserves and she never gives up. I can only hope that I can someday be the mom Rhonda is to her daughter.

Amy is another amazing person, who I've had little contact with, but the assistance she has given my family is more that I can fully describe. She is the executive director of the DSACF. I don't know if she fully understands how much the tools she gives families affects their lives. We look forward each year to the Buddy Walk, and the Florida Down Syndrome Conference (next year it will be the National conference!). I've finally decided to start participating in as many monthly meetings as possible (Janice I'm hoping you're at some). The program they have established for health care professionals is amazing. This program is so important to me because it addresses the diagnosis issue many of us have. I can't explain how difficult receiving a diagnosis of Down syndrome can be, especially when health care personnel are insensitive. That day we received Bailey's diagnosis is one I will never forget.

I remember being at the first Down Syndrome Conference we attended. Keith and I were eating breakfast at the hotel, and I saw a table which had several people sitting there, two of which were young adults with Down syndrome. I couldn't help but stare. I thought these young adults were a couple, which was great, but I was led to believe Bailey wouldn't have that type of relationship. After that day, I continued on with my life and didn't think I would see those people again. Then one day I was sitting in church. We were standing and singing, Amazing Grace, of course. That song already makes me teary-eyed, but the events that happen during that song made me weep like a child. I was holding Bailey, I had her backpack with her feeding bag in it on my back, and I was struggling to sign the attendance book. I felt a gentle tap on my shoulder and a nice lady offering to hold the book as I tried to write. I looked up and it was the mom of the young man I saw at breakfast. I signed the book, thanked her, and then cried like a little baby. When the service was over, the lady introduced me to her son and his girlfriend. When I get home from church I realize this young man is the Eagle Scout I read about when Bailey was first born. The Eagle Scout who got all his badges without taking any shortcuts. During this year's conference this young man's girlfriend received an award. She sang a beautiful song and he stood by her side. There were few people in the room who didn't have tears in their eyes.

This is just a small sample of the people who have helped us through this journey. I appreciate ALL the people we have met. I can't imagine going through this alone. I appreciate all the advice we've been given, and I appreciate the comfort I've felt and the ability to share my concerns without being judged.


Monday, October 12, 2009

Bailey Part 6

I often feel ashamed for the thoughts and fears I had when Bailey was born. I can't believe I wondered if she would walk, talk, or recognize her family. I can't believe I spent the first several months of her life crying. I wasted so much important time with Bailey. I do still have emotional moments. Most of those times occur when I'm fighting for something Bailey needs, which is happening a lot lately.

It took time for me to stop comparing Aubrey and Bailey. I would think, Aubrey was rolling over already, or Aubrey was crawling already, or walking already. I wasn't being fair to Bailey. No child is the same as another. We work with Bailey to achieve these milestones, but we've made the decision not to pressure her. She receives therapies at school, which are important, and we work with her at home, but I have learned that I can't let it rule our lives.

Bailey and Aubrey have an amazing relationship. It is obvious when watching them play together they love each other so much. Aubrey holds Bailey's hands and tries to get her to walk. They sit together on the floor and play together with Bailey's toys. When Aubrey sees pictures of Bailey in the hospital she cries. Aubrey will teach Bailey so much about life, and Bailey has already taught Aubrey more about life than I ever could.

We will continue to face challenges and obstacles in life. I've been reminded lately of Bailey's challenges by recent evaluations and I've had struggles to get phone calls returned by "professionals". We will continue to fight for what she deserves, and she will continue to teach us to not judge others by what we see on the outside, and to love unconditionally. I couldn't imagine a greater gift than Bailey. We have two beautiful little girls, and I consider myself blessed.

Bailey Part 5

As Bayflight landed, we were informed that Bailey was in heart failure. I always thought of heart failure as an issue for the older people. Never did I imagine I would have a child who would be battling this at such a young age. The flight crew came to Bailey's room, and took her up to the helicopter. We were told the nurse would contact us once they landed, and we got on I-4 and headed to Tampa.

Bailey spent a couple of weeks at St. Joes. She had one minor heart surgery, and a cardiac cath. She was on a ventilator for a couple of days, and we were sent home with an NG tube to assist her in gaining weight and also due to reflux. We visited Dr. W's office every 2-3 days prior to open heart surgery. We saw him more than we saw her cardiologist. Dr. W made all the decisions concerning her medical care. He would advise us when we needed to take her to the hospital. She had numerous hospital stays for what we called "tune-ups", and eventually we had her on oxygen at home. During these hospital stays we spent every night with her. Not once did she sleep alone. I began to admire her strength, and I knew I had to be strong for her.

On Monday September 18th we arrived at St. Joe's for Bailey's heart surgery. I couldn't wait for this day to come, and now that this day was here I was terrified. This is the day Bailey chose to roll over for the first time. This was a milestone we had been working so hard for, and we celebrate by sending her in for surgery! We were surrounded by family and friends that day. I cry now as I think of how difficult it was to hand her off to the nurse. I was terrified for her. Surgery was successful, and within 5 days she was sent home on oxygen.

Bailey was a different baby after surgery. I had heard stories from other people about how much more active she would be and how her color would improve. They were right, she was an active little girl, and she was no longer our blue baby. She has remained healthy since surgery. We've had a few hospital visits for feeding issues, respiratory infections, and mrsa, but those visits are much better than the long hospital stays where we wonder if she is going to survive.

Sunday, October 11, 2009

Bailey Part 4

We were blessed to have the pediatrician we have. I didn't realize how amazing Dr. W was until we spent time with him as he cared for Bailey. We only had well baby visits for Aubrey, so this experience was different. We saw Dr. W the day following our hospital release. He requested all reports from the hospital, and he spent over an hour with us. He did more during that hour, than any doctor did during the 4 days at the hospital. Dr. W eased my fears and sent us home, asking us to return in a couple of days.

We were in Dr. W's office regularly. He checked Bailey oxygen levels, her respiratory rate, and her heart rate. It was obvious she was struggling, but we knew we had to let her grow. Dr. W increased her caloric count, and we worked hard getting her to eat. Bailey had to gain weight.

It had been over a week since Bailey was born. During that time we waited for tests results to confirm that she had Down syndrome. Every appointment we had with Dr. W I asked for results, and he never had them. When the phone would ring, my heart would drop. I knew that call would be coming soon, I just didn't know when. On May 18th my phone rang. It was Dr. W's nurse asking me to hold for Dr. W. He said Bailey tested positive for Trisomy 21, and asked if I had any questions. I said no, and quickly got off the phone. I cried.

The next two days were very difficult. Bailey stopped eating. We tried everything, but she would refuse and fall asleep. We woke up every 3-4 hours during the night trying to feed her. I just knew she'd get hungry and start eating, but she didn't. We called Dr. W's office Saturday morning, but never received a return call. Finally, we decided to take Bailey to the hospital.

We arrived at the hospital and they triaged Bailey. We were taken back immediately. Bailey was taken to the procedure room. Her little body couldn't be seen because she was covered in nurses and doctors. Is she really that sick? She just wasn't eating, but everything else seemed normal. We sat in the hall outside the door of the room. We watched through the door as they worked on Bailey. The doctor came out and explained to us that she was very sick. He had release forms for us to sign, and said they would be flying her to St. Joe's Children's hospital.

Saturday, October 10, 2009

Bailey Part 3

Again, I do not have these opinions anymore.

Dr. R came in after reviewing Bailey's echo. He confirmed that she did have a complete AV Canal defect, and she would require open heart surgery. However, we'd have to wait for her to gain more weight before they would perform the surgery. He said they usually do the surgery when children are 4 months old. He said this heart defect meant she had a large hole between the chambers of her heart, and one heart valve. When he left, we just held our little girl and told her how much we loved her.

This was supposed to be a time for celebration, and I don't believe I smiled during that time. We had a few visitors at the hospital, but it was difficult for any of us to find the right words. We were very honest with everyone. We weren't ashamed of Bailey, but we were very scared for her. During this time I'm not sure we thought much about Down syndrome. We thought more about her sick heart, and wondered if she would survive.

After spending 4 days in the hospital, Bailey and I were both released. They gave us instructions on what to look for if she went into heart failure. They said Bailey would turn blue, she would sweat, and become mottled. They gave us an appointment with Dr. R, and sent us home.

We arrived home and put Bailey in her crib. Her tiny body just laid there. I looked around her room and cried. This wasn't HER room. This room was for our normal child. This room was for the child we expected to bring home. The happy frog decor was for a healthy baby, and the baby I brought home was not healthy. I cried.

I felt so lonely during this time. Keith and I had each other to lean on, but nobody else understood what we were feeling. I felt ashamed for saying I wanted a normal baby, but I did. I didn't want to see her suffer. I didn't want to deal with open heart surgery. I also, didn't want to lose my baby. Was she going to die?

Bailey Part 2

Again, remember how I think has changed.

I was so afraid about what life with Bailey would be like. Would she ever walk? Would she ever talk? Are kids going to make fun of her? Will she get married? I cried... a lot! Keith was amazing. He was supportive, listened to my concerns, and did research. He would go home, find positive articles on the Internet and bring them to the hospital.

The Down syndrome diagnosis had not yet been made. However, through our research we knew there were a few common characteristics. We knew about the gap between her toes, the slanted eyes, Palmer crease, shorter limbs, and low muscle tone. We also knew about medical complications associated with Down syndrome. Those included, congenital heart defects, frequent ear infections, sleep apnea, thyroid problems, and an increased risk of developing leukemia.

So, knowing what I know, I started looking at Bailey from head to toe. She had the gap between her toes and her eyes were slanted, but that is all. Everything else seemed "normal". She didn't have a heart defect or any other medical complications. Maybe, just maybe, these "professionals" were wrong.

The next morning my thoughts that the doctors were wrong quickly diminished. Again, while I was alone, another doctor entered my room. Dr. R introduced himself as the pediatric cardiologist. Crap! All I could think about was how much I wanted this guy to leave my room. I didn't want to hear it. I was tired of getting bad news. I wanted that perfect child I had been dreaming of. Why can't she just be perfect? Dr. R began to describe the murmur he was hearing and said they would like to do an echocardiogram on Bailey. He said this would help them diagnose what could be causing the murmur. He left.

Like the previous visit with the other doctor I remained calm until I was once again alone. Then, I lost it. I began to cry hysterically. I couldn't believe this was happening. Keith came in soon after Dr. R left. I began to tell him what the doctor said. At that moment, he and I knew Bailey had Down syndrome.

Friday, October 9, 2009

Bailey Part 1

Please remember the way I think has changed, so take no offense.

In September of 2006 we discovered we were having another baby. In the past, we had been excited to find out we were expecting, but this time was different. This pregnancy happened just a few months after we had a miscarriage. We were cautious and a bit scared. We made the decision to keep quiet about the pregnancy until we were in the second trimester.

I went to all my prenatal appointments. I had the triple screen done, because "if my child has something wrong with her I want to know". The results were normal. I also had a few ultrasounds, and everything seemed normal. After each appointment I became more excited, and the worry eventually disappeared. When we told family and friends, they were all excited about the upcoming birth of our baby girl. Aubrey was excited too...

I saw my doctor for my final appointment during the first week in May. He had my cesarean scheduled for May 7th. We spend the few days leading up to Bailey's birth preparing her room. My dad painted the walls a beautiful bluish purple color to match her bedding. Keith assembled her dresser and crib, and I put the final touches on the decor.

Aubrey spent the night before Bailey's birth with my parents. So on May 7th Keith and I arrived at the hospital, excited about the birth of our second little girl. I was prepped for surgery, as our families began arriving to the hospital. Everyone visited me for a few minutes prior to surgery, then Keith and I entered the OR. My OB was the same as the one who delivered Aubrey. He remembered the nightmare of Aubrey's delivery, and teased me about the large tumor he had to deliver with Aubrey... we called it her twin.

He made his incision, and within a few minutes we heard the most beautiful cry. I thought, "she's okay", and I took a deep breath. Finally, Aubrey has a little sister, and we have another beautiful little girl. We were able to see Bailey before she was taken away to get cleaned up. I went to recovery.

Recovery is horrible. You lay in a bed with a nurse who stares at you until you are stable enough to be taken to the mommy baby room. Finally I was stable, and they took me to my empty room. Keith, our parents, and Aubrey were downstairs eating breakfast. I was enjoying a few minutes of quiet when a doctor and nurse entered my room. I assumed they were coming to check on me, but I was wrong.

The doctor said something I will never forget, he said "some of the nurses seem to think your daughter may have Down syndrome, and after looking at her I believe they may be correct". He described the gap between her toes, and the slant in her eyes, and all I could think about was the tests that said everything was fine. At that moment I felt my life as I knew it was over. I remained very calm until they left, then I broke down. I wish I had asked him why he felt the need to tell me this while I was alone. Why couldn't he have just waited for Keith to come back? This was the most difficult thing I have ever been told, and I had no support. I was devastated.

Soon after, Keith returned. I can't imagine what he was thinking when he came in and saw me crying. This was supposed to be the happiest day of our lives, and here I am crying. I didn't know what to say. How do I tell him that Bailey isn't perfect? How do I explain that those hopes and dreams we had for her aren't going to happen?

Wednesday, September 30, 2009

It's Been SO Long

I almost forgot my password!!! Keith had to remind me this blog existed by telling me I've been neglecting it!

Wow, what has happened these past few weeks. Has my life been THAT boring, I haven't posted anything, or has it been THAT exciting I haven't had time. Well, if you looked at my Facebook page you'd realize it hasn't been that exciting. I need to do a Disney montage from our vacation. I can't believe I haven't put pics on here yet.

Bailey is doing very well. She used a walker today at school and walked! I am SO proud of her! We are in the process of getting a walker for her to use away from school, but that process is taking much longer than I expected. She's been full of personality lately, and I see her beginning to have Aubrey's personality.

Aubrey is also doing very well. She loves cheering. They're beginning to learn stunts, and I'll post pictures soon. She's learning so much in Pre-K. I've been told that kindergartners are tested just 30 days after school starts, so I'm very happy we got her into this program. She has learned so much in the past month. She knows all her months, days of the week, and can count to thirty. After thirty, it becomes thirty ten, thirty eleven, thirty twelve...

Keith and I are great. We work, a lot! We really enjoyed our week at Disney, and wish we didn't have to return to reality. Keith continues to work very hard, and I'm just trying to survive at work. I'm still seeking that dream career, that IS NOT management. I've been managing people for 15 years, and I'm over it!

Well Keith and Aubrey should be home soon, and I need to start cooking dinner. I'll post pics soon.


Sunday, August 30, 2009

Random Stuff

Friday confirmed my weight loss... 18 pounds! So, of course this weekend I went crazy eating everything I could, then tomorrow it is back to the same 'ole boring stuff. The doctor was very excited for me, and he'll see me again in 2 months. So, my goal for the next 2 months will be 25lbs. That's around 3 pounds per week. Fairly reasonable.

We have 1 week before vacation! We are so excited. We're spending a week at DISNEY... yes we're vacationing less that 30 minutes from home. We're so adventurous! I can't even count the number of times we've been to Disney since Aubrey was born; however, we usually just drive over for the day. This time, we've decided to rent a vacation home near Disney property. It's a fairly large house with a pool and jacuzzi. Which will mean a little privacy, plus we'll be able to prepare meals in the house rather that eating out every meal. This will also allow us to have more space than a hotel room. Which we'll need after spending an entire day together in the heat. Yes, we love each other, but it's nice to have space when needed. I'm so excited for this vacation. We really need some time away from work!

Aubrey had a game yesterday and the boys ended up losing. Her squad looked miserable. They were hot and sweaty, and bugs were everywhere! I just keep telling myself that it'll start cooling off soon. She still enjoys cheering. I wasn't sure she'd survive, but she has.


Wednesday, August 26, 2009

The Many Faces of Bailey

Updated pics of Bailey... this is a work in progress, so there's more to come. Also, you'll be seeing one of Aubrey in the near future.

Weight Loss Day 46

18 down and much more to go! Today I had an appointment with Dr. G (thankfully not THAT Dr. G) and so far I've lost 18 pounds. At this rate it will take me 367 days to get to my goal... that's a LONG time! I actually go to Dr. N on Friday, he's the doc monitoring my weight loss, but I thought I'd go ahead and update. I will say I've cheated much more than I should, so I'm happy with this loss. I always hear it's good to go slow, and that's what I'm doing. On Friday I'll see Dr. N and he will recheck my potassium, which has been high. My blood pressure today was NORMAL! That's an improvement.


Saturday, August 22, 2009

The Past

I did a montage from the game today, and came across the one I made when Bailey turned one. It's amazing how much she's changed over the past two years. I think I'll update this with more pics, so we can see even more amazing changes. Our little girl is growing up.

For those who haven't seen this before, it does show pics from her heart surgery, so please be prepared or feel free to make the decision not to view.

These are pics of Aubrey from this morning. If you're a member of her team and would like to see pics of all the girls please send me an e-mail. I didn't want to post everyone here for privacy reasons. The girls were amazing! I was so proud of each and every one of them.


Thursday, August 13, 2009

Lawsuit: Footage shows school abuse

This made me scared and terrified of the future. I hope we never experience anything like this. I can't imagine seeing either of my children treated this way.
This child, who is unable to communicate, was dragged by two adults from his classroom to isolation. In this video you are able to see blood on the floor and walls of isolation. This same day, the young man in the video broke his finger. The teacher has been terminated, but not due to the abuse seen in the video.

Lawsuit: Footage shows school abuse

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Monday, August 10, 2009

First Day of School

Bailey barely survived her first day. She was asleep before we left the parking lot. Poor little girl won't nap at school, and the increase in her usual activity wore her out. Now, it's over an hour past bedtime and we still hear her in her bed. So, tomorrow may be another exhausting day for her.

She has her same paras as last year, but she does have a new teacher. Miss Grace is very nice and we look forward to spending an exciting year with her.

I need to get laundry done. Goodnight.


Sunday, August 9, 2009

Weight Loss Day 29 and School!

Weight loss is still going okay. I have had a few moments of weakness, but I've been impressed by my strength. I never imagined I would survive 2 weeks, but I've made it almost an entire month! I return to the doctor this week, and I hope to report success. I continue to eat fruit and yogurt for breakfast, a Healthy Choice steamer for lunch, and a healthy dinner. I still drink water... lots and lots of water. Sometimes I add flavor by using a Crystal Light packet. I have more energy, and clothes seem to be fitting better.

Bailey returns to school tomorrow. She's in bed, and I'm packing all her bags. We have school supplies, extra clothes, diapers, DAFOs, Leg Immobilizers, lunch, and her Benik Vest. Bailey's lunch will be provided once public school starts, but until then we need to pack lunch for her. We were able to leave her nap mat at school during Summer break, so thankfully we don't have to take that too. Plus, all the items we take tomorrow can stay in her assigned cabinet (it's SO big), and we just replenish as needed. Well it's time to move on to something else.



Saturday, August 8, 2009

Eye Surgery

Bailey had her eye surgery yesterday and hopefully it was successful. She had her first eye surgery over a year ago, and after a few months we noticed it didn't work as well as we had hoped.

Here's how our day went...

We woke up at 4:00am! We showered/bathed, and I gave Bailey her breathing treatment. We packed goodies for the day and started our journey to St. Pete. The drive was nice. It was just me and Bailey. We listened to music, sang, and she danced. We arrived at the hospital at 6:00am, checked in, and we were immediately taken to her room. They checked her vitals, changed her clothes, and gave her antibiotics. Then we were taken to isolation(she's MRSA+). We met with nurses, anesthesiologist, and saw Dr. C. Then they took her back. She cried, and it broke my heart. She NEVER cries.

I waited in the conference room and within 45 minutes Dr. C came in to say all went well. So, I went downstairs, had a bagel and drink, then came back up. I waited in her room hoping to see her soon. Recovery is usually 30 minutes, but it had been an hour. The nurse came in and said I have been requested in recovery. Now I worried. When I entered recovery Bailey was being held by the nurse. Apparently the anesthesiologist was prepared to sign her out and send her to the short stay unit, but Bailey decided it would be fun to desat. So, once her oxygen levels became normal we went back to the SSU, and were soon released to go home. Now, I think I'll be a little more concerned if anesthesia is in her future. Until this episode, I was treating this surgery like any other day... no big deal.

When we got home she and I went to Subway for lunch, then we met Keith at Achievement Academy for orientation. I can't believe school starts Monday. It seems like she just got out. She has a new teacher. We will miss Miss Jody, but we're excited to get to know Miss Grace.

Here are a few pictures from this morning. One day post-op

Monday, August 3, 2009

Dog Found

Loved this story, so I thought I'd share.


Sunday, July 26, 2009

Walking, Walking, Walking

Please click on Memory Walk and/or Buddy Walk on the sidebar for information on how to join us, or how to donate. These two items are very important to our family. More info later... it's bedtime.


Thursday, July 23, 2009

Day 11

Weight loss is still going okay. I have had 3 diet cokes since the beginning, but that is much better than the 10 per day I usually have. Eating less is becoming easier and easier. The challenge is on weekends and evenings. I just try to keep myself occupied. I follow up with Dr. N in a few weeks. I did have an appointment with Dr. P this week, and I HAVE lost weight. I'm waiting until my appointment with Dr. N, who is monitoring my weight, to give updates on the loss since I did my beginning weight on his scales.


Tuesday, July 21, 2009

Vote For Jackson

I'm helping my cousin out... Go Vote For Jackson!
These are some of the most adorable cows!


Wednesday, July 15, 2009

Good News!

Good news! Bailey had abnormal labs recently, but we repeated them today and they're normal! Yay! And... she didn't cry. She's SO amazing! I have pics of Aubrey and Bailey swimming at Grandmas and Papas and I'll add those soon.

Weight loss is getting easier! I know it's only day 3, but I've accepted I have no choice but to do this. I think I'm actually starting to like water. We went to Panera Bread, and I made the choice to drink water. Yay me! I had a simple turkey sandwich and only ate half of it. I usually get a creamy soup with my sandwich, but I didn't tonight! I won't weigh until I go to the doc again, but I will share the results... good or bad.


Tuesday, July 14, 2009


Wow, I was able to log in and start this post while trying to log into Facebook, and Facebook still hasn't loaded.

Day 2 has been difficult. STILL no soda. That has been the difficult part. I ALWAYS have a Diet Coke in my hand. It's my accessory, and now it's been replaced by Zephyrhills. So sad. If I were a normal person, like Shelby (yes, I called you normal!), one wouldn't hurt. But... that is my addiction, so I guess cold turkey is the best way to go.

Still no Facebook...

So, I hung in there. Apples and grapes for breakfast with wheat bread, a healthy choice steamer (very good) with wheat bread, and chicken and squash again for dinner. Oh... and a snack of apples, grapes, and cranberries.

I survived day 2... 2 more years to go!


Sunday, July 12, 2009

Weight Loss

Today (Monday) I began one of my biggest challenges in life. I'm sharing it here, and will continue to post about it, because I'm hoping to have some encouragement. Plus this makes me feel more accountable, and since I have a hard time following through on things, I need that accountability.

About a month ago I was reading the newsletter from the clinic my family goes to for medical care. A doctor from this clinic wrote about his weight loss program. The timing couldn't have been more perfect. It was after the holidays and I was feeling fatter than usual, and it was after a few very stressful months with family medical issues. I mentioned the article to Dr. P, my primary care, and she had nothing but good things to say about Dr. N and told me to contact his office. So I did.

I've struggled with my weight for at least 15 years. I was fine until I graduated high school and everything went downhill. I think my motivation at times has been when I'm single and I feel I have to try to look good all the time. When I'm comfortable with someone, as I am with Keith, I feel good as I am and I don't work as hard as I should to continue to look good.

Now, my motivation is my health. Which is the reason I should be motivated. I need to be healthy. I need to be healthy for me, I need to be healthy for my husband, I need to be healthy for my children, and I need to be healthy for my parents. Each of those people depend on me, or will need to depend on me sometime in the future. I can't imagine life continuing on without me. I can't imagine not being able to watch my girls grow up, I can't imagine not being able to help my parents as they grow older, and I can't imagine Keith being alone with all our responsibilities... or even worse, I can't imagine him finding someone else. I'd find a way to make his life miserable if he did something like that!

I have tried many diets in my life. I've tried Nutrisystem, Jenny Craig, Atkins, Pills, calorie counting, and many more. They have all been successful while I was on them, but when I ended the diet I gained more that I originally weighed.

Over the past few months I haven't been feeling well. Mostly due to sinus issues. I've had numerous tests during this time, plus Dr. N did some tests prior to the start of my weight loss program. The results haven't been great. It seems every time a test is done, I can expect a call to address the issues found. I'm only 34 and I really shouldn't be dealing with health problems at this age. I need to lost half my body weight to be at a healthy weight! That's sad!

So, today I started. For breakfast I had a fruit cup with yogurt and walnuts. For lunch I had a Kashi meal, a slice of wheat bread, and dried cranberries. For dinner I had a chicken breast and squash. For a snack I had grapes. I ONLY drank water today... which is very difficult. I'm a soda drinker day and night, and I miss my soda. So, I have survived day 1 of many.


Sunday, July 5, 2009

Aubrey, 4 Years

Pictures from Aubrey's 4 Birthdays.

Aubrey's Party

Here are a few pics from Aubrey's 4th Birthday party. She had SO much fun. These pics are a few weeks old, but I'm way behind on organizing my pictures.


These are a few pics from a recent trip to the Florida Aquarium.

Saturday, June 27, 2009


I have so many pictures to add! I need to upload them to the computer... which may be sometime during the next year or two. We've celebrated Aubreys birthday, and we've had hospital visits, we have bathroom pics, we have rash pics, we have bump on the head pics. Since I've waited so long to put them on the computer, it's going to take even longer to organize them.

Aubreys party was great. She had friends from school join us, and we celebrated with noise makers, silly string, bubbles, leis, and lots of other messy things. It was great! It's so hard to believe she's 4 already! She was so amazing today. Very helpful. We cleaned house ALL day! So we rewarded her with a trip to Baskin Robbins. She loved it!

The hospital visits, rash pics, and bump on the head pics all come from Bailey. Our most recent hospital visit was last week when her temp reached 105.1. I've NEVER seen our thermometer get that high. We were able to get her temp under control and we were sent home. We're doing breathing treatments and giving her meds to hopefully get this gunk cleared up. She's been sick since the first week in May! The rash pics are from today, that's a new symptom she decided to add recently. And the bump on the head is from our Down syndrome picnic. I was sitting in front of her on the picnic table and she decided to lean to the side and fall off onto the concrete floor beneath us. Thankfully, I reacted quickly and caught her before she made hard impact. So, the result was a bruised and scratched head.

Like Bailey, I have been sick for a few months. I have an appointment next week with ENT, and hopefully we can come up with a treatment plan and get this bug out of our house. We'll also continue to work with Bailey's doctor to see if we can relieve some of her symptoms and determine a cause.


Friday, June 19, 2009

I Want to Have Down Syndrome

Aubrey asks each day what we have planned for the next day. So, this morning she asked what we have planned for tomorrow. I told her we have our Down syndrome picnic tomorrow. Then she asked if she has Down syndrome, and I explained to her that she doesn't have Down syndrome, but her sister Bailey does have Down syndrome.

Then she asked if Bailey's friends have Down syndrome, so I named all of Bailey's friends who have Down syndrome. Then she asked if the people on TV have Down syndrome, so I explained about the little girls and boys we see on the Baby Signing Times DVD who have Down syndrome. Then she asked if she has friends who have Down syndrome, and that's where I made a mistake. I said "yes, Taylor has Down syndrome". Then Aubrey started crying, and saying she wants to have Down syndrome.

I tried to explain to her that it's something you're born with, and that those who are born with Down syndrome need people like her to help them advocate for their needs. Then I had to explain what advocate means, and finally it was time for her to go to daycare! Whew!

I want her to understand what Down syndrome is, and I also want her to feel free to ask questions. But, I'm not sure how to handle it. I've wondered for the past two years what these conversations would be like. Now that I've had one, I wonder what future conversations will be like, and how to handle them.


My Nails Have Been Painted for 2 Years

So, my grandmother ended up in the hospital over the weekend. She, too, has Alzheimer's or some other form of dementia. This is the first time I've seen her this confused. First, my dad commented about how nice her nails look, and she said "well Ronnie, they've been like this for the past 2 years". Then she asked me if I still live on Airport Thruway, and that road is in a different state and is also where my sister lives, not me. It's interesting to see these changes. She has moments where she's completely okay, then she has moments like those I just discussed. I'll continue to be thankful for the moments we have, but she changes each and every time I see her. It's becoming more and more difficult for her to walk. Which is something I've read numerous times about Alzheimer's. She is also easily irritated, and is often confrontational. This is such a sad sad disease.


Wednesday, June 10, 2009

Alzheimer's Poem

Dear Dad
byJulie Western-Zuge

Dear Dad...
How can I tell you now,
Just how much you've always meant,
Just how proud I've always been

How can I tell you now,
That you have always been my hero,
Everything I want to be

Here you are, this shell of the father I once knew,
Whose face is more dear to me each passing day
Even in your pain making me proud, still

Your sense of humor endears you to all around;
I see the women who can now barely function,
The smiles that light their faces when you stop to kid with them.

What a man you are,
Still the greatest man I've ever known,
Still my biggest hero

Here you are, a victim of life's most hideous disease,
Yet you go on making others feel special,
Making a difference in so many lives

Dear Dad, can I ever be so great as you?
Can I ever let you know how much you mean?
You are one of God's most precious angels

And I thank Him for each day
He allows us to go on having time together,
As this cruel disease slowly steals you from me.

If you'd like to join us for the Memory Walk, or if you'd like to donate please click on the Memory Walk button on the side bar.

These past few years have been very difficult for everyone involved, especially for my dad. Nobody deserves this, especially someone who hasn't even reached the age of 60. I know as each day passes he will continue to face challenges brought before him. He will continue to be the great man he has always been. I can only hope he realizes just how much he is loved and needed.


Saturday, May 16, 2009

Labs and X-Rays

Yesterday we had Bailey's yearly labs and x-rays done. I thought I would arrive early and finish early so Bailey could be at school when it starts... 9am. So we arrived at Watson Clinic for her x-rays and we were finished within a 5 minutes. Great! However, I did question them about the x-rays because last time I remember they had to lay her on the table to do additional x-rays, but the tech said we were finished. So, off to the lab we go. We arrive at the lab and they try to convince the supervisor to allow them to do a finger stick. The supervisor tells them that Dr. W always wants his labs done in the arm. Well, they get the first vial from the arm, and then the flow of blood stops. So, they become successful in convincing their supervisor to allow a finger stick for the remaining vials. Bailey is just wonderful. Very few tears, and she even smiles as we sit for 30 minutes hearing all the stereotypes of children with Down syndrome and their moms. Finally, we're finished.

Then, we head to Dr. W's office for a weight check. As we're walking to the scales Dr. W sees us and say, "glad you're here. We need to do more x-rays of Bailey's neck". Apparently something didn't look quite right, and had they done the additional x-rays I questioned them about (which were also ordered), Dr. W would have been able to determine if there really was a problem. So, we finish doing the weight check, and she still isn't gaining weight. She's lost 1.5 pounds in 3 months. They're going to recheck her Monday morning.

So, we head back over to the clinic, finish the x-rays, and Bailey arrives at school 2 hours late! I go to my doc appointment, get diagnosed with bronchitis (so happy I went so I can start meds and get rid of this cough). I actually feel great, I just sound like crap! Then, I go to work and continue to worry about Bailey's x-rays. Sometimes I wish doctors wouldn't tell you there could be a problem. Just wait until there's a problem to tell me.

Finally, around 3pm I get a call from Dr. W's nurse. The x-rays look good! Whew! However, there are some issues with her white blood count and they are going to do a repeat CBC in a month. So now, we hang out and wait again. She has been sick a lot lately, so hopefully we just need to keep her healthy so those counts return to normal. We constantly have infections (staph, mrsa, bronchitis, weird fevers). So, we'll see what happens next month.

Well, I'm going to enjoy the rest of my quiet time. Keith is at the movies, and Aubrey and Bailey are both sleeping.


Tuesday, May 12, 2009

Appointment Update

Well, I guess it's my fault for being an "I need answers" kind of person. I always think there should be an answer and cause for everything, but now I wonder if I should just accept that some things are a mystery. I hate not getting answers.

We went to Dr. K today and I gave him the entire history of the past few weeks. He seemed concerned that today she had only had one wet diaper, but he had no explanation. He seemed concerned that she would only drink chocolate milk from a bottle for babies 0-3 months, but he said her throat is still irritated and that could be the cause, but why can she eat toast which is rough around the edges if her throat is hurting so badly. He's concerned that she rarely has a bowel movement, but he told us to give her an enema and MOM.

So our instructions are to get IV fluids if she goes 8 hours without a wet diaper... well that will happen daily, unless she drinks enough chocolate milk. Give her an enema tonight and tomorrow morning, start giving reflux meds again, and if she has to get IV fluids to get them to give her Prevacid in the IV. I questioned him about her possibly aspirating, but he really didn't comment on that. I explained the coughing and watery eyes, but he didn't seem concerned.

We can't keep taking her to the ER or admitting her for fluids. We can't keep giving her chocolate milk through a bottle. There has to be some reason for this, and there also has to be an end in sight. I can't get anyone to tell me when we'll start worrying about this. Should we continue with chocolate milk for a few days, weeks, months... how long?

This isn't normal for her. She eats and drinks anything! She's also lost 1.5 pounds since our last appointment 2-3 months ago. He said it may be due to being in the hospital, but she weighs the same she did when we were admitted.


Sunday, May 10, 2009

We Have an Appointment With GI

We will be seeing GI on Tuesday, and I will request another swallow study. She has had several in her life because of aspiration, but the last showed clear. Since we had the cold/bronchitis issue maybe that caused some other problems! Thank you all for that advice! We suggested at the hospital that we thicken her liquids, but that idea was dismissed by the staff there. But she is, like Leah said, getting watery eyes and spitting it back out with force. I really could have used an umbrella these past few days! She even refused fruit and applesauce. Well, we'll see what they decide on Tuesday. She'll also be returning to preschool on Monday and I'll get with the speech therapist there and see if she can start working on these current issues.

Yes Em, Dianne called yesterday morning to give me the good news. I'm so happy for her, and thankful that you were able to go up there. Dianne said she was a bit upset that she didn't have family around. So, thank you! I can't believe she was in labor that long... I'm so thankful for cesareans!


Saturday, May 9, 2009

Help, Advice, Something!?!

Let me first start by saying we arrived home from the hospital about 2 hours ago.

Now... the long story and I'd love advice if anyone has some to share.

Over a week ago Bailey starting running a low grade fever. Then, last weekend it started getting higher 102-103. On Monday we went to the doctor where he said "it's viral, she'll get better". Monday night she stopped eating and drinking and her last wet diaper was at 8:00pm.

Mid morning Tuesday I call Dr. W again and he sends us to the ER for fluids. We arrive at the ER where they do a CBC, urinalysis, chest and abdominal x-rays, and examine her eyes, ears, throat, breathing, etc. Abdominal x-rays showed constipation, so she received an enema (she pooped then, and hasn't pooped since). She was also diagnoses with bronchitis and pharyngitis. They gave her fluids for 4 hours, and sent us home with an antibiotic.

Wednesday we follow up with Dr. W. She's looking okay, but she still isn't drinking. He said to keep an eye on her and update him Thursday. So, on Thursday she still hasn't had anything to drink so I call him and he gives me 4 hours to get her to drink 4 ounces. So, I gave her a dose of Motrin to relieve any possible pain and start trying to get any type of fluid in her. No luck! So, we go to Dr. W's office. He looks at her and says she's looking okay, but he is concerned that she isn't drinking. He's still leaning towards viral, but is more concerned about dehydration. She still has tears, but her wet diapers are getting less frequent. So he decides to admit her.

We arrive at the hospital, get settled in, and then our nurse comes in to introduce herself. Well, she's the nurse I wrote a letter to the hospital complaining about from our last visit. She, of course, remembered us and I see that if my issue was addressed (which her supervisor said it would be) it didn't cause any changes to be made. She was still very difficult to deal with and very rude. Well I didn't make a request to change because I knew we'd only have her a few hours before shift change and thankfully we didn't get her any more. So they started IV fluids and antibiotics. We also continued the Motrin for pain.

On Friday, she still wasn't drinking. The doctor started discharge paperwork and said if we could get her to drink something they would discharge her. The problem that had us confused was that Bailey would eat with no problems, but when she tried to drink she would spit it back out at us. We tried water, apple juice, gatorade, milk, chocolate milk and nothing worked. We requested ice cream, and she ate that. The nurse said that counted as a liquid and they could release us, buy I didn't feel comfortable bringing her home if that was the only "liquid" she was consuming, so we stayed another night.

Today, my goal was to get her to drink. They reduced the amount of IV fluids going in her body and I ordered salty and acidic foods. I just knew this would work! So, I pour gatorade and she refuses, I try milk and she refuses, I try apple juice and she refuses. I even tried coffee and got nothing! We were using a sippy cup and a cup with a straw because she uses those 2 items at home. Then a nurse suggested we try a bottle, so we tried that with gatorade and got nothing. Then we try chocolate milk in the bottle and she drinks an amount which we are satisfied with. Then, we order a meal for her and get regular milk. We put that in the bottle and she refuses. Then, I refill it with chocolate milk and she drinks it. So we think obviously the current issue isn't medical and we decide to come home. Knowing if we need to get fluids in her we can use a bottle filled with chocolate milk. We came home and had dinner. I tried giving her juice and she refused. I did not give anything else, so hopefully she'll be thirsty in the morning.

Now, I want to understand what her problem is. Why is she doing this? Has she regressed? Did we really screw up in our desperation by giving her a bottle with chocolate milk? What do we do now? Is this going to keep happening?

I'm exhausted. Goodnight.


Friday, May 8, 2009

Happy Birthday Bailey!

Well Thursday was Bailey's second birthday. She continued feeling that drinking wasn't a necessity. However, Dr. W felt that she needed fluids and admitted her to Lakeland Regional. We had plans to celebrate her 2nd Birthday tomorrow, however those plans have now been cancelled. We hope to be out soon.


Tuesday, May 5, 2009


Well, the last wet diaper she had was last night. She also had no interest in drinking anything today. Dr. W made the decision for us to take her to the ER. So off to the ER we go. They were able to get us right back, which is great. I hated even going there because I didn't want to expose her to the germs at the hospital, so getting on back was good news. The doctor we had was the same we had when she went into heart failure. He was, once again, great. He checked everything. Urine, negative. Abdominal x-ray showed constipation so we gave her an enema. She was dehydrated, so she received several hours of IV fluids (he says enough to get her through 1-2 days). Chest x-ray showed bronchitis. CBC was okay, but we'll get a repeat in a few weeks with Dr. W. Urinalysis, negative. Bronchitis was a bit of a surprise, since she's shown no symptoms. However, she has now completely lost her voice, and has been sneezing and has a nasty cough. She is still smiling, and has an amazing appetite. We follow up with Dr. W tomorrow, and the doc today said she can return to school Thursday, but we'll get the final okay tomorrow.

I also got an opportunity to thank the doc for everything he did when she went into heart failure. I thanked him for saving her life, but he said he had nothing to do with it. He said she was in Gods hands, and I say we were blessed to have this staff on duty that very scary day.


Monday, May 4, 2009


Bailey has been running a low grade fever for a few days now. Over the weekend it did get to 102-103 on occasion. It's now hovering around 101. She has NO symptoms. She's been smiling, giggling, laughing, eating, drinking, etc. She was a bit more quiet tonight than usual, but other than that she's seemed fine. I did call Dr. W today and he asked us to bring her in. I brought her in, thinking it was possibly a UTI (she has a history of them), but his main concern was the flu... good news, she doesn't have the Swine Flu! Her lungs are clear, ears look good, nose and throat look good. So now, we'll just wait. I'm sure it'll pass, but I hope it does soon. We'll be celebrating her second birthday this week! Plus she's missing school!


Friday, May 1, 2009

Book Review

I laughed, cried, and couldn't put it down. This book made me feel "normal", especially since we are approaching Bailey's 2nd birthday and those thoughts of her birth and first 2 years are in my mind constantly. Lately, I've been happy, overwhelmed, stressed, and doubting my abilities as a mom and wife. This book, as well as the Gifts book, have been so helpful in allowing me to understand my own feelings and uncertainties. Thankfully, we didn't have issues with Bailey being a preemie like Thomas, but we did have to endure several months of hospital stays due to her heart issues. Like the Soper family, the diagnosis of Down syndrome for us was not received until after birth. It was comforting to know another mom felt the same emotions I felt when Bailey was born. The excitement of a new child, the sadness due to "mourning" the child you didn't have, and the stress and overwhelming feeling of having a child with medical complications. I love seeing Thomas and his siblings grow to love each other. I loved seeing websites which were very familiar to Kathryn Soper during her research were the same as those I used. The help I received from downsyn.com is more than I ever received from the medical community. I will be forever grateful for the families on that website for the advice and support they gave, and continue, to give. I also enjoyed reading the last few chapters which make reference to the Gifts book, and the process she went through in gathering stories and getting the book on the shelf. I remember going to Barnes and Noble while Bailey was in the hospital. We were looking for something that would give us hope, and Gifts did just that. So, Kathryn Soper got me through birth, diagnosis, and first year... now, I can only hope we'll see something about the toddler days.

Thursday, April 30, 2009


Bailey has been attending school for 1 week and 1 day. I meant to post something sooner, but life at our house has been a bit more hectic than usual. I'm going to try to post as much as I can now, but it seems both of the girls are PMSing at the ages of 3 and 1! I tried quiet time, but that didn't work.

So, on Wednesday we all drove to school and took Bailey to her classroom. She was very eager to join the class while we were there, but when we left she became a bit upset. The tears came and went throughout the day, but it really wasn't too bad. That day they did an Earth Day celebration where Bailey planted a plant to bring home (it's dead already) and got the most adorable Earth Day shirt. She did not have any interest in taking a nap on a mat... and she still has no interest!

She continues to get better each and every day, and I love seeing her excitement when I pick her up. She still isn't interested in napping. They tried rocking her (which works until they put her down), placing her in a pack and play, and using her mat on the floor. It's so funny because at home she can fall asleep anywhere... even her exersaucer!

I've been working for two weeks to find a child care center/vpk program for Aubrey. Finally, today, I think I found the one for her! I was very impressed with the staff, the security features, the programs offered, and the class sizes. I plan to call tomorrow and get her enrolled to hopefully begin next week.

In 7 days Bailey will be 2!

I think Bailey is teething. She's fussy, had a slight temp last night, is chewing on her fist, and is drooling!

Work is going okay. It's been a bit of a crazy schedule. I go in before school to do paperwork or whatever I have time to do, leave to get Bailey ready for school and drop her off, then return to work to finish everything I need to do for the day, then pick Bailey up at school which sometimes completes my day, or I take her to either my parents or Keith's moms house and return to work. School will be out in June for 2 months, so it'll be interesting to see what we end up doing then.

I received this in my e-mail today and thought I'd share.
Thoughts of a Mom

By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Monday, April 20, 2009

Fun Day

So, today I finally got my car repaired. Had a battle with Bailey's therapists on why I'm discontinuing therapy, why they haven't sent the requested paperwork to her school, then I finally got copies myself and took them to the school myself. Then, went to Target and Sports Authority to get Bailey's school supplies, and now we're home and I'm calling and researching child care facilities. This is such a hard thing to do. I have a few contacts who are trying to assist me in this job, because I don't want the girls to be harmed wherever they go, and I'm researching the state inspection reports. I worked overnight last night, took a 2 hour nap this morning, and somehow I'm still awake. Well... I'm no longer on hold. Gotta go.


Thursday, April 9, 2009

It' a Beautiful Day

We closed on our house today! I'm so excited to be rid of that nightmare! I miss it sometimes, but I don't miss the $$$ mortgage, the smelly bathroom (no, not that type of smell!), and the not-so-safe neighborhood. However, I will miss the spacious bedrooms. I do love where we are now. I love that we have 3 fenced acres for the girls to play in, I love that we have the ability to eventually purchase it if we'd like, I love that we're saving money, and I love the security I have here. I feel like a huge weight has been lifted.

There's more... yes, I have more good news! Bailey will be starting school in the next few weeks. Bailey?... yes Bailey! I'm so excited that she'll be attending classes at Achievement Academy. She'll be in a class of 10 students with 1 teacher and 1 para.

Well, I guess that's enough excitement for today.


Prayer Request

When Bailey first received her diagnosis and we began frequent stays in the hospital I had the pleasure of getting to know someone going through a similar situation with her daughter, Julia. Today Julia went into respiratory distress. Please keep their family in your prayers.


Cracked Pot

I received this from a friend today and thought I'd share. Enjoy.

An elderly Chinese woman had two large pots, each hung on the ends of a pole which she carried across her neck.

One of the pots had a crack in it while the other pot was perfect and always delivered a full portion of water.

At the end of the long walks from the stream to the house, the cracked pot arrived only half full.

For a full two years this went on daily, with the woman bringing home only one and a half pots of water.

Of course, the perfect pot was proud of its accomplishments. But the poor cracked pot was ashamed of its own imperfection, and miserable that it could only do half of what it had been made to do.

After two years of what it perceived to be bitter failure, it spoke to the woman one day by the stream. 'I am ashamed of myself, because this crack in my side causes water to leak out all the way back to your house. '

The old woman smiled, 'Did you notice that there are flowers on your side of the path, but not on the other pot's side?'

'That's because I have always known about your flaw, so I planted flower seeds on your side of the path, and every day while we walk back, you water them.

For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are there would not be this beauty to grace the house. '

Each of us has our own unique flaw. But it's the cracks and flaws we each have that make our lives together so very interesting and rewarding. You've just got to take each person for what they are and look for the good in them.

Wednesday, April 8, 2009

Back to Reality

So, we returned from a nice vacation and it was back to reality. Priority for us was to deal with Bailey and see what was going on with her. On the cruise she wouldn't eat or drink. She would store everything in her mouth, but never swallowed. We went to her pediatrician on Tuesday(last week) and he determined she had MRSA again. We did not do a culture, but he was confident. Then on Wednesday we ended up in the ER with Bailey because her temp went to 103 and wouldn't break. Thankfully, we were taken to peds immediately, and seen quickly. They did do a culture, opened up the wound and drained it, and decided not to admit her, but have us return several times over the next few days. So, we returned and everything continued to improve. Then, I received a call from the hospital confirming the culture came back positive for MRSA. We are continuing to watch her, but she is still showing improvement.

Well because of the MRSA issue, her eye surgery will have to be rescheduled. This will be her second and hopefully last eye surgery. They'll be doing it at All Children's Hospital in St. Pete. The doctor tried glasses in her office, but saw no improvement in her vision/crossing. Please pray for success.

Aubrey is battling a cold, I've already won my battle, and Keith is starting his. Bailey... well she's still without symptoms.


Out Trip Home

And finally, we returned home. We really enjoyed our family trip, and we enjoyed spending time with each and every person who joined us. I regret that we didn't get to spend as much time with everyone as I had hoped, but it was nice just having dinner together as a family.

Vacation Day 4

So day 4 brings us to Great Stirrup Cay. This is the private island for NCL. We got off the ship around 11am, boarded the tender, and arrived at the island soon after. Aubrey and Keith were already there and playing on the beach. I took the stroller, thinking it would be easier, but we did have a few difficult moments. However, I don't regret taking it. We went for a swim, Aubrey played for a while, then we went to the BBQ and tendered back to the ship. I think I was wrong in the previous post... I believe this was the day the girls and I napped. Later in the evening Aubrey went to the Kids Club and Keith and I went to the adult joke show and the adult quest game... very interesting. I saw more body parts than I care to see.