The Warren Family

3am

2010-11-17T02:49:00.003-05:00

Well it's 3am. For some reason I continue getting roommates with issues. Last night I had a snorer, and tonight I have someone who requires the door to be open and someone has to sit with her. Thankfully, I slept all day.

I was admitted to the hospital yesterday because of a blood clot. I was put on Heparin and thankfully this was discovered before it travelled to my lungs.

Since the birth of Chloe I have been quite sick. Total exhaustion and just not feeling well. My hemoglobin dropped very low and I was admitted 2 months ago for a few days to receive IV meds. Since my release I have been seeing a hematologist who gives me IV venofer weekly. The clinic felt I would benefit from having a PICC line and it was inserted on Thursday. By Friday I was already showing signs of a clot, and I finally went to the doctor yesterday. This is my 3rd clot in 4 months, but my first deep vein.

When the previous clot was discovered they did an ultrasound and found that I have a large thyroid nodule. They did a biopsy which came back inconclusive. So, as long as I continue to recover well it will be removed on Thursday. They will check the nodule immediately and if it is malignant they will remove my entire thyroid.

The doctors suspect I may have an autoimmune disorderb which caused these issues to suddenly appear. I see a rheumotologist next week to confirm or deny those suspicions.

I don't feel as bad as I may sound. With a little patience it will all get better.

Tricia

Chloe

2010-11-03T22:09:00.003-04:00

It's hard to believe Chloe is already 4 months old. Having three little ones has been a challenge, but well worth it. Aubrey and Bailey love having Chloe in the house, and have adjusted well to the changes. Chloe loves her swing, and loves eating. Her doctor actually told us to cut back on how much she eats. This is such a change from when we had Bailey. It's difficult to know when enough is enough, especially when she wants to continue eating. She is now on solids and doing very well. She's had rice cereal, bananas, and sweet potatoes. Tomorrow she will try carrots or green beans.

Chloe looks so much like Keith. It's funny how different each of our children are. Bailey and I look alike, and Aubrey is a combination the two of us. Chloe spends most of her days at my parent's or Keith's moms house. She loves to smile and laugh, but she does not like being out of the house. She screams when we go to restaurants, parties, or shopping.

Bailey

2010-10-31T16:24:00.003-04:00

Bailey is doing very well. She is now 3 years old. She is walking very well, trying to talk, and is almost ready to start potty training. Bailey has been very healthy for the past year, which is good news for us. I think her last hospital stay was around December of last year.

Bailey is such a tough little girl. It is nothing for her to walk into a wall, fall down, or get a bad infection and keep going like nothing has happened. She can be very demanding when food is involved. But, is happy most of the time.

Bailey has started her 3rd year at The Achievement Academy. She moved up to another class and is doing very well. It was a difficult transition for us because we loved her past teacher and para's, but we had to understand that this is what was best. Bailey interacts well with her classmates, works hard to achieve her goals, and is exhausted when she gets home! We're really going to miss everyone when she turns 6 and graduates!

It's hard to believe where she started. First, we thought we were having a healthy baby. Then, after delivery we were told she has Down syndrome. Then, the following day we were told she had a heart defect. She came home, went into heart failure, had open heart surgery, had a feeding tube, had two eye surgeries, hospitalized many times for feeding issues, MRSA, and pneumonia. Now, she's like any other child. I love her so much!

Bailey has adjusted well to having a little sister. She only gets jealous when papa is holding Chloe. I can't wait to see my three little girls grow up together. Last year her teachers taught her how to hold a baby doll and be gentle. I owe them so much! That was a wonderful idea, and thanks to them Bailey hasn't thrown Chloe across the room.

Aubrey

2010-09-06T21:48:00.005-04:00

I haven't updated in a while. Actually, it's been six months. So, I'll start with updates on the oldest child and work my way down to Miss Chloe.

Aubrey graduated from VPK in June. It was very exciting, and yes, I cried. I feel I cry at every event she has. It's so difficult to watch her grow up. Once VPK was over, Aubrey started Summer camp at the Y. I remember dropping her off the first day and... crying. Can I blame all the tears on pregnancy hormones? She was such a big girl. She wore her backpack and walked from the car to camp all alone. I was so proud of her, but also sad because my little girl was finally growing up.

The last week of camp was called Camp Idol. They had an awards ceremony and talent show. Aubrey's "talent" was dancing. She and a friend danced to Lady GaGa's Poker Face. I guess I should be thankful she didn't go with her initial plan of Single Ladies from Beyonce. I can only imagine the dance she would have done then. So, during the talent show they gave out awards. Aubrey's ability to talk to anyone about anything paid off. She was awarded "Most Likely to be a Talk Show Host", and "Most Unforgettable Camper". We were SO proud, and yes, I had a few tears, but I wouldn't really call it crying.

Now we start the kindergarten journey. Aubrey's school was a B rated school, which I was satisfied with, but just before school started the new D grade was released. I then questioned if this was the school for her. So far, I am happy with everything. Aubrey likes her teacher, and I'll begin volunteering there this week, so hopefully I'll get to know her better. Keith and I are also involved in SAC, and the school is working to improve their D grade.

I am so proud of the little girl Aubrey has become. She loves her little sisters, and shows concern for others. She is beautiful inside and out, and she'll be the first to tell you! She's confident, smart, and strong willed. She is very much Keith's girl. They are more alike than either will admit.

Another Month has Passed

2010-02-27T13:48:00.004-05:00

I think every time I update it's because someone is sick, or has been sick. So, I'll start off with pregnancy news, then end with my germ infested family!

As most of you know, this little one will be another GIRL! Poor Keith. I think we'll have to buy a boy dog, just to give him a little sanity. So, far this little one seems healthy. They did a thorough look at her heart, and everything looks fine. What a relief that was. The final odd from the NT scan are 1:300 for a child with DS. Bailey was 1:5000+ (can't remember the exact number), so I know odds really don't mean much. Of course, terminating wouldn't be an option, so we elected not to do additional testing.

Bailey is doing great! We have been using a gait trainer (walker) with her, and she is taking a few independent steps. She will, when prompted, say I love you. We are getting her new set of DAFO's next week, and hopefully a new walker and kid cart. It's nice to see the process of getting these items only took a short 4 months! Hmph! I've heard you shouldn't complain about things that are free; however, these items are for my child, so I think I have every right to complain. The DS clinic is in a few weeks, and I hope we're able to take Bailey. We've had a few medical issues with her, and I'd like to get a second opinion, and this clinic would be the perfect opportunity. Just last week we found ourselves in the ER again. This time with a double ear infection, tonsillitis, MRSA (AGAIN!), and pink eye. It's just so frustrating that she is sick almost every month. It's to the point that we're missing out on several events because she always seems to be sick. Plus she is missing school, and I hate for her to miss even a day, because she has accomplished so much since starting.

Aubrey is growing up. It's hard to imagine she'll be starting kindergarten soon. She's already talking about dating boys! That's scary! We received her pre-k graduation pics this week. She is writing sentences independently, and knows most of her sight words. Yesterday, we took her to the doctor and she has strep throat! So, she is now in her room "sleeping" (playing with Barbie).

My dad has also been sick, and this illness is causing me to ask you all to pray. He spent a few weeks in the hospital receiving antibiotic treatment and was on a pump for pain. He has since been released. He has a picc line and is receiving IV antibiotics at home to treat the infection. Once the infection has been treated, and his body is stronger he will have surgery. First, he will have surgery on his stomach. The infection in his stomach has caused erosion, which will require surgery. The doctor is hoping all goes well, however he has been honest with his concerns. Then they will treat a mass which is on his pancreas. We are not sure if it is benign or malignant, but we will find out as soon as possible. The primary concern is treating his stomach issues.

Keith is doing very well. He is now a VP! Congrats to him! He has been working long hours, then coming home to help with the girls. He's been great. Especially since I spent a lot of time away from home while dad was in the hospital.

It's COLD in FLORIDA! We're looking forward to Summer. I can't wait to spend time with the girls at some of the parks, aquarium, and zoo before this little one comes around. We'll have a lot to celebrate during the Summer. Keith, Aubrey, and Bailey all have birthdays, and in July the little one will be joining us. Then, the national DS conference is at Disney, which I hope we'll be able to attend. I guess it'll all be about timing.

I hope you all are doing well.

Tricia

Two Months... Really?

2010-01-15T15:15:00.003-05:00

Two months later and I update. Facebook is going to be the death of this blog!

We had an amazing Thanksgiving, Christmas, and New Year's. We spent time with family and friends. Thanksgiving was celebrated twice. We spent that day at my parents house, and that weekend we visited Keith's family in Orlando. We had a great time.

Christmas was crazy as usual. We attended several Christmas parties, however we did miss our Down syndrome party because Bailey was terribly ill. She spent several days in the hospital leading up to Christmas, and was almost re-admitted on Christmas Eve. It started as a cold, which led to dehydration, which ended with low O2 Sats. It took a couple of weeks, but she finally recovered. Christmas morning was spent at our house with Keith's mom and my parents joining us for brunch, and that evening we went to Keith's dads house for Christmas dinner. The girls enjoyed this Christmas.

We celebrated New Year's eve with Aubrey at Sea World. She and I napped in the afternoon, then we drove to Orlando to celebrate the New Year at Sea World. She was amazing. She was so good, and survived to midnight. She had her first lesson in waiting in line for the women's restroom at an event. She saw confetti fall from the sky, and counted down to the new year.

The pregnancy is going okay. I am exhausted, crampy, and still vomiting. Poor Keith is having to deal with this. I'm in bed at 8pm every night, and I am thankful for his patience. Please don't take this as complaining, this little one is worth everything. We did have a bit of unsettling news this week. I'm hoping it means nothing, and the odds are that it means nothing. I received a call earlier in the week that the preliminary results of the NT scan were normal, and they gave me an appointment for the beginning of February. However, yesterday, I received a call from the nurse stating that the final results were in and Dr. G wants to see me on Tuesday.

At first I was fine, but after talking to Keith I felt the need to know... now! I called the office, but I was sent to voicemail, and I have yet to receive a return call. I've had my share of teary moments since yesterday. I know if this little one has any complications we will face it like we always do. I'll update when we know more.

Tricia

It Didn't Last Long

2009-11-17T16:24:00.002-05:00

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.

Tricia

FIrst of Many

2009-11-13T15:05:00.002-05:00

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.

Tricia

Time Moves Too Fast

2009-11-12T22:31:00.002-05:00

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.

Tricia

Bailey Part 8

2009-10-17T20:54:00.003-04:00

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.

Tricia

Bailey Part 7

2009-10-17T15:23:00.004-04:00

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.

Tricia

Bailey Part 6

2009-10-12T21:36:00.003-04:00

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

2009-10-12T16:15:00.004-04:00

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.

Bailey Part 4

2009-10-11T20:25:00.003-04:00

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.

Bailey Part 3

2009-10-10T21:36:00.002-04:00

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

2009-10-10T14:36:00.002-04:00

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.

Bailey Part 1

2009-10-09T21:00:00.005-04:00

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?

It's Been SO Long

2009-09-30T17:14:00.002-04:00

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.

Tricia

Random Stuff

2009-08-30T20:48:00.003-04:00

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.

Tricia

The Many Faces of Bailey

2009-08-26T21:42:00.003-04:00

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.

Photo and video editing at www.OneTrueMedia.com

Weight Loss Day 46

2009-08-26T19:47:00.002-04:00

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.

Tricia

The Past

2009-08-22T20:57:00.001-04:00

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.

Make video montages at www.OneTrueMedia.com

2009-08-22T13:42:00.002-04:00

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.

Tricia

Lawsuit: Footage shows school abuse

2009-08-13T22:30:00.002-04:00

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

Shared via AddThis

First Day of School

2009-08-10T21:26:00.002-04:00

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.

Tricia

Weight Loss Day 29 and School!

2009-08-09T21:00:00.002-04:00

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.

Goodnight!

Tricia

Eye Surgery

2009-08-08T20:50:00.007-04:00

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

Dog Found

2009-08-03T20:45:00.003-04:00

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

Tricia

Walking, Walking, Walking

2009-07-26T21:57:00.001-04:00

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.

Trish

Day 11

2009-07-23T20:30:00.002-04:00

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.

Tricia

Vote For Jackson

2009-07-21T21:11:00.001-04:00

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

Tricia

Good News!

2009-07-15T21:14:00.003-04:00

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.

Tricia

Updates

2009-07-14T21:15:00.004-04:00

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!

Tricia

Weight Loss

2009-07-12T22:31:00.003-04:00

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.

Tricia

Aubrey, 4 Years

2009-07-05T22:57:00.003-04:00

Pictures from Aubrey's 4 Birthdays.

Aubrey's Party

2009-07-05T22:49:00.003-04:00

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.

Aquarium

2009-07-05T22:40:00.003-04:00

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

Updates

2009-06-27T23:15:00.003-04:00

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.

Tricia

I Want to Have Down Syndrome

2009-06-19T14:42:00.002-04:00

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.

Tricia

My Nails Have Been Painted for 2 Years

2009-06-19T14:31:00.002-04:00

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.

Tricia

Alzheimer's Poem

2009-06-10T21:44:00.003-04:00

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.

Tricia

Labs and X-Rays

2009-05-16T15:37:00.003-04:00

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.

Tricia

Appointment Update

2009-05-12T21:16:00.003-04:00

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.

Tricia

We Have an Appointment With GI

2009-05-10T09:43:00.003-04:00

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!

Trish

Help, Advice, Something!?!

2009-05-09T21:34:00.003-04:00

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.

Trish

Happy Birthday Bailey!

2009-05-08T13:19:00.002-04:00

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.

Tricia

Diagnosis

2009-05-05T21:01:00.002-04:00

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.

Tricia

Sick

2009-05-04T21:18:00.002-04:00

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!

Tricia

Book Review

2009-05-01T16:37:00.003-04:00

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.

Trish

School

2009-04-30T17:37:00.003-04:00

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.

Trish

2009-04-30T17:27:00.000-04:00

I received this in my e-mail today and thought I'd share.

Tricia

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.

Fun Day

2009-04-20T15:28:00.004-04:00

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.

Tricia

It' a Beautiful Day

2009-04-09T21:23:00.002-04:00

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.

Tricia

Prayer Request

2009-04-09T20:55:00.002-04:00

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.

Tricia

Cracked Pot

2009-04-09T20:51:00.002-04:00

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.

Back to Reality

2009-04-08T22:39:00.003-04:00

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.

Tricia

Out Trip Home

2009-04-08T22:30:00.003-04:00

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

2009-04-08T22:12:00.003-04:00

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.

Tricia

Vacation Day 3

2009-04-08T21:35:00.008-04:00

So day 3 we arrived in Nassau. We had breakfast (notice a theme? we love to eat), and got off the ship at 10:00am for our excursion. We were greeted by a nice lady and asked to wait... and wait... and wait... while the others in our tour got off the boat. Then we walked... and walked... and walked until we arrived at a boat where we boarded and took a journey to another boat. Then, we made the transfer from one rocking boat to another rocking boat. It actually wasn't as difficult as I thought it would be... even with the children. The boat we just got on is called a semi-sub (similar to a glass bottom, but not as bad). So we climbed down to the bottom of the boat. We saw various fish and Aubrey really enjoyed seeing all the different types. She did want to see Nemo and a shark, but that didn't happen. Then we climbed back to the top of the semi-sub, transferred back to the other boat, and returned to the pier. After we got off the boat we boarded a bus for our city tour. We went to the Queen's Staircase, drove past the hospital, and visited two forts. Then, we returned to the ship. The girls and I took a nap. After dinner, Keith, Frank, Molly, and I went to the Newly Not So Newlywed Game, and Aubrey went to the Kids Club where they took over the ship during their Pirate Parade. That night Bailey started showing signs she wasn't feeling well... I just hoped we could make it home before she got took sick.

Tricia

This cute dog was waiting for us went we returned to our room for bed. Aubrey destroyed it, because I told her she had a surprise in her room. She didn't realize THIS was the surprise. Instead she thought the surprise was inside the dog.
Aubrey and Michael at one of the forts.

This is the tail end of the Pirate Parade

Vacation Day 2 (Happy Anniversary!)

2009-04-06T21:06:00.006-04:00

So, on day 2 we left our hotel around 11:00am and headed to the port. It was a short drive, only about 10-20 minutes. We arrived at the port, unloaded our luggage with the porter, and parked. This process was easy. Then, we checked in, got the key to our room, had our boarding pictures taken, and then we were on the ship. We were greeting with champagne, and the girls were greeted with a glass of OJ. The ship was beautiful. Very clean and the staff seemed so friendly. Then, after just being on board for a few minutes we, of course, decided to eat. After lunch we found Keith's dad, Molly, Tim, and Michael. We visited for a few minutes and then all separated to find our rooms. Aubrey changed to her swimsuit and we went to the pool deck for the sail away party. After that we had dinner, went to a show, then Keith and Michael went to the bar and Aubrey and I had fun shopping and watching my dad play blackjack. Aubrey was so spoiled. The lady in the Del Sol shop painted her nails... each one a different color, then gave her two rings, then I got her a pair of sunglasses and a new shirt. After that, Aubrey passed the nightclub where they were playing loud music and dancing. She was almost spellbound. So, we went inside and listened to the music and Aubrey enjoyed dancing.

Aubrey in the kids pool.

Whew! It was very windy!

Bailey was excited!

Yes, she's spoiled.

Beautiful Miami as we're heading out to sea.

Our room... it isn't very large!
This is Aubrey's bed. We did fold it out at night, and she slept very well.
She was amazed and excited!

Vacation Day 1

2009-04-04T21:09:00.002-04:00

We began our vacation last Thursday. Keith and I both started our days at work. I took care of any paperwork that needed to be done before my return and left work around noon. I also met with the electrician at the house that is hopefully sold. When I arrived at the house the electrician informed me that the buyer had just stopped by and told him all the repairs that are needed. I, of course, made a quick call to my realtor to inform her of how unhappy I was that this lady took it upon herself to discuss repairs with my electrician. It isn't her house yet, and she shouldn't be there without her realtor. We determined all necessary repairs, called the sheriffs office to do another incident report (because we keep finding items which have been taken), called the insurance company to add more to the claim, then went home to finish packing.

Keith got home around 5:30pm and we loaded the car and went to my parents to get them and the girls. We all piled into the van, put a DVD in for Aubrey (I love our van!) and started our 5 hour journey to Miami. Bailey cried for over an hour. We finally stopped for a break and I was able to get her to fall asleep. We arrived at our hotel in Miami around midnight. We had two rooms, both with double beds. I called front desk and asked if they had a pack and play or crib for Bailey to sleep in and she said "yes, but we can't get one for you until tomorrow morning when housekeeping gets in". Well, that does me no good. So, in 1 double bed slept me, Bailey, AND Aubrey. I actually slept fairly well.

Trish

Ants

2009-04-04T19:54:00.002-04:00

It's dry season in Florida and the ants are back... and in the house!

Keith: (spraying the ants) I don't know where they're coming from.

Aubrey: I think they are coming from outside.

Isn't she great? I love her!

Closing

2009-04-04T18:57:00.002-04:00

The past few nights have been filled with dreams/nightmares of our upcoming closing of our nightmare home. We purchased this house in 2005, when the market was a sellers market. Well... let's just say we paid a bit too much for it. Now, several years later we've decided to sell it. So, we found a realtor, moved out, put a sign up and hoped for the best. Then I receive a call that someone broke into the house. Well, of course we had damage. A broken window, hole in the ceiling, all copper wiring removed (even the plug to the oven), wiring to the AC removed, and freon drained from the AC. So... we get an offer on the house. We start making repairs on the house, then find out the buyers have vanished. Then, a few days later we get another offer. So, final repairs should be made next week and we should close before the 15th... hopefully.

Oh! We're back from our cruise. I'll update later.

Tricia

World Down Syndrome Day

2009-03-21T22:37:00.002-04:00

Common Ground Park

2009-03-19T22:41:00.006-04:00

Several weeks ago I posted pics from opening day at Common Ground park. I now have more pictures that are a bit better. We've been back a few times and here are pics from those visits.

Pictures at Hollis Gardens

2009-03-19T22:15:00.006-04:00

These are pictures I took this past weekend at Hollis Gardens. In March of 2005 Keith and I were married there. It's such a beautiful place. Unfortunately, there were two weddings there this weekend, so it was difficult to get the pics of the girls I wanted. Thankfully, when Keith and I were married we were the only wedding of the day.

Disney

2009-03-19T21:45:00.004-04:00

These pics are from February, I'm just very behind at getting pics from the camera to the computer. A family friend came to town with his family. So, while Keith was home sick I took the girls and my parents to join the Gavin family at Disney. Here are a few pics.

Mom and Aubrey on Dumbo

Mom on the Carousel

Bailey Blowing Kisses and Aubrey in Back Pouting

School and Dad

2009-03-06T11:35:00.002-05:00

Last week I attended open house at Achievement Academy. It went great. I'm so excited that Bailey has the opportunity to attend classes there. She'll arrive at school each morning at 9:00am and her day will end at 2:00pm. It's so funny to think of our little girl going to school. She'll have circle time, arts and crafts, she'll learn her ABC's and 123's. She'll also receive her therapies there. School starts in August! We just hope she is one of the few children able to attend.

Dad had his appointment with the doctor Monday to receive his diagnosis. He's been sick since 2005. The diagnosis is Vascular Dementia. He was apparently hopeful that he had something that could be treated, but when he asked the doctor they told him there isn't a treatment option for Vascular Dementia. It's just so sad to think of him still having hope, and now, it's just been taken away. He will gradually decline, and I honestly thought I was okay with that, but now that we've received a diagnosis I find myself in tears each day. I'm sad when I think about my girls not having their grandpa around forever. I'm worried about how Aubrey will accept the progression of this disease. How she will understand what is happening. Now, I just pray for my mom to have the strength she'll need, and for my dad to remain as upbeat as possible and enjoy his family. They'll be joining us in just a few weeks on our cruise, and I can't wait to share this time with them.

Tricia

Down Syndrome Advocates Lobby on Capitol Hill

2009-03-04T21:10:00.004-05:00

I just thought I'd share this with those who aren't aware of the events in DC last week. A very sincere thanks for those who attended and were the voice for many families like ours.

Disability News

Trish

Dog hero

2009-02-28T14:54:00.001-05:00

The Animal Odd Couple

2009-02-28T14:40:00.001-05:00

2009-02-20T20:39:00.002-05:00

I guess it's ~~time to bore~~ update again. I'll post pictures soon ~~I'm just too lazy to walk to my car and get the camera~~ .

Bailey is doing great! She had her tube removed this week after ~~only a year of not using it~~ just a few months of not using it because her doctor wanted to be certain she was ready. We're so excited! Now, we don't have to worry so much about staph! She has PT, OT, and speech twice per week and has an EI who comes out twice per month. Speech is going very well. Which, I figured would be easy for her seeing that she comes from a family who loves to talk and eat. PT and OT are sometimes a bit of a struggle. She finds easier ways to accomplish tasks, which means she isn't doing things the right way. We also got great news that we can take her off Pediasure! We're moving on to Carnation Instant Breakfast, and I'm hoping it's cheaper. We don't have any health worries with her now. We see her pediatrician on a normal schedule, cardiology once per year, and GI every 3 months. She's growing so much and has an amazing personality. We have open house at Achievement Academy next week and she'll be starting classes in the Fall.

Aubrey is also doing very well. She's still going to class twice per week and dance class once per week. I've also looked into t-ball in the Fall. She loves to dance! She talks more than our entire family combined. She loves other children and has a boyfriend (Gasp!).

Today I went with Molly to a fundraiser for Morning Star School. I'm so happy she invited me to join her. I had such a wonderful time and the children were adorable. They had a silent auction, fashion show, and luncheon. The money raised today will cover 2/3 of the expenses to run the school for an entire school year. Isn't that amazing? That leaves tuition very reasonable for families. I'm still going to school, and I probably will still be a student when I'm 50 35. Keith wants to go back for his Masters, and I hope he isn't waiting for me to finish.

As you saw below, we're going on a cruise... with both girls... and some family members. I'm so excited. I don't know if I'm more excited to get away from work, or if I'm more excited to spend time with my family. Either way, we'll have a great time... I hope.

Trish

This Could be Great...

2009-02-20T18:28:00.001-05:00

or a mistake. But, I'm thinking it'll be great.

We leave the day of our anniversary. We're taking the girls with us. I'm so excited. This is our 3rd or 4th cruise, but it'll be the first time we've been with the girls.

Trish

Feeding Tube?

2009-02-19T20:27:00.001-05:00

Gone! They removed it today. It's time to celebrate!

More later...

Trish

Smart Dog

2009-02-16T20:57:00.003-05:00

An older, tired-looking dog wandered into my yard.
I could tell from his collar and well-fed belly that he had a home and was well taken care of.
He calmly came over to me, I gave him a few pats on his head;
he then followed me into my house, slowly walked down the
hall, curled up in the corner and fell asleep.
An hour later, he went to the door, and I let him out.

The next day he was back, greeted me in my yard, walked inside and resumed his spot in the hall and again slept for about an hour.

This continued off and on for several weeks.

Curious I pinned a note to his collar: 'I would like to find out who the owner of this wonderful sweet dog is
and ask if you are aware that almost every afternoon your dog comes to my house for a nap.'
The next day he arrived for his nap, with a different note pinned to his collar:
'He lives in a home with 6 children, 2 under the age of 3 - he's trying to catch up on his sleep.
Can I come with him tomorrow?'

I Can't Even Come up With a Title for This

2009-02-07T00:58:00.002-05:00

This is one of the reasons I have such a strong opinion about abortions.

http://hosted.ap.org/dynamic/stories/B/BOTCHED_ABORTION?SITE=FLTAM&SECTION=HOME

Why God Made Moms

2009-02-07T00:42:00.003-05:00

WHY GOD MADE MOMS: Answers given by 2nd grade school children to the following questions:

Why did God make mothers?
1. She's the only one who knows where the scotch tape is.
2. Mostly to clean the house.
3. To help us out of there when we were getting born.

How did God make mothers?
1. He used dirt, just like for the rest of us.
2. Magic plus super powers and a lot of stirring.
3. God made my mom just the same like he made me. He just used bigger parts.

What ingredients are mothers made of?
1. God makes mothers out of clouds and angel hair and everything nice in the world and one dab of mean.
2. They had to get their start from men's bones. Then they mostly use string, I think.

Why did God give you your mother and not some other mom?
1. We're related.
2. God knew she likes me a lot more than other people's mom like me.

What kind of a little girl was your mom?
1. My mom has always been my mom and none of that other stuff.
2. I don't know because I wasn't there, but my guess would be pretty bossy.
3. They say she used to be nice.

What did mom need to know about dad before she married him?
1. His last name.
2. She had to know his background. Like is he a crook? Does he get drunk on beer?
3. Does he make at least $800 a year? Did he say NO to drugs and YES to chores?

Why did your mom marry your dad?
1. My dad makes the best spaghetti in the world. And my mom eats a lot.
2. She got too old to do anything else with him.
3. My grandma says that mom didn't have her thinking cap on.

Who's the boss at your house?
1. Mom doesn't want to be boss, but she has to because dad's such a goof ball.
2. Mom. You can tell by room inspection. She sees the stuff under the bed.
3. I guess mom is, but only because she has a lot more to do than dad.

What's the difference between moms and dads?
1. Moms work at work and work at home and dads just go to work at work.
2. Moms know how to talk to teachers without scaring them.
3. Dads are taller and stronger, but moms have all the real power 'cause that's who you got to ask if you want to sleep over at your friends.
4. Moms have magic, they make you feel better without medicine.

What does your mom do in her spare time?
1. Mothers don't do spare time.
2. To hear her tell it, she pays bills all day long.

What would it take to make your mom perfect?
1. On the inside she's already perfect. Outside, I think some kind of plastic surgery.
2. Diet. You know, her hair. I'd diet, maybe blue.

If you could change one thing about your mom, what would it be?
1. She has this weird thing about me keeping my room clean. I'd get rid of that.
2. I'd make my mom smarter. Then she would know it was my sister who did it not me.
3. I would like for her to get rid of those invisible eyes on the back of her head.

27???

2009-02-05T20:50:00.004-05:00

I got in the van this morning and the temperature reading was 27 degrees! Here? In Florida? Then, I saw icicles!?! In Florida? It's just too cold!

Bailey had a swallow study last week and it went very well. Hopefully, she'll have her feeding tube removed in the near future. Since my last update she's had another staph infection. Once the tube is removed we won't have to worry as much about staph. She's still having speech, PT, and OT twice per week. Speech is going very well, but PT isn't. She loves to scoot and roll, but has no interest in crawling.

Aubrey is doing fine too. We've been battling a cold on and off, but who hasn't? She's sweet one day, and a little trouble maker the next. She can spell her name, and knows her address. I'm so proud of her! She has a valentine/boyfriend. Melissa, if you're reading this... Colby is her valentine!

Keith and I are doing okay. The company Keith works for has been doing layoffs for several weeks. Since Keith is the only engineer in his office, I feel he is safe, but I still continue to worry. Unfortunately it will probably be a while before the economy stabilizes, which is sad. I hate seeing so many people lose their jobs. People whose families depend on them for financial support. Work is going okay for me. Our salaries are frozen due to these tough times, but at least we haven't started laying people off yet. Our COO and CEO took pay cuts, and travel by air has been restricted. School is going okay. It's tough, but I need to survive this term.

I have pictures from our recent trip to Disney and I'll post later. We really enjoyed visiting Bob and his family. It was nice seeing them again.

Trish

Buddy Walk

2009-01-30T12:37:00.003-05:00

We're already raising money for this year's Buddy Walk. Please see the side bar to donate or visit www.firstgiving.com/littlebailey

Trish

Heading to Disney

2009-01-24T23:45:00.002-05:00

Well, in a few hours we'll all be waking up to spend the day at Disney. We have a friend of the family in town with his wife and kids, and we'll be joining them. Aubrey is SO excited, she even cleaned her room! It's so nice to having something great to use when you need a room to get cleaned. I'm exhausted, and should be in bed, but I think I'll just toss and turn once I get there. I arrived at work Friday at 4:15am for an audit. We had a meeting at noon, I left at 5:00pm and returned at 7:00pm and didn't leave again until 2:00am. 20 hours working... salary sucks! I need to go back again tomorrow night, but I'm not sure if I'll make it. I need to study for a test coming up Wednesday, plus we have the Disney plans for tomorrow, and I also have to be at work at 4:00am on Monday. Monday I'll be transferring to a new location. Hopefully I'll be there for a bit longer than my past locations. Plus this one is closer to home.

Goodnight.
Trish

Common Ground Park

2009-01-17T11:02:00.006-05:00

Common Ground Park is a park for children of ALL abilities. This park opened at 3:00pm yesterday after being under construction for approximately 1 year, and a cost of $1.9 million. We were there for the grand opening. It was so exciting! The park has a butterfly theme, and $585,000 were raised for the park from a butterfly sculpture auction. You'll see some of the butterflies in the pictures below. Several companies donated funds and services for this project.

Bailey is so excited. A park for her!

It was hard keeping up with Aubrey. There is just so much to do.

This sandbox is huge! Next to it is a rock wall. Not your typical rock wall, I'll have to post pictures of it later when we visit again. There were just too many people there, so I couldn't get all the pictures I wanted.

The park is designed with different levels of difficulty. A map is located at the entrance. The map shows all areas of the park and the levels of difficulty at each area. They also have recordings at the map that tell you about the park and the name each area and level of difficulty. The tunnels above are large enough for children with wheelchairs to get through.

American Sign Language

Picnic tables for the kiddos. This area is also has music playing. When we were here it was playing Head, Shoulders, Knees, and Toes!

This is a music area.

She loves it!

The park is only 10 minutes from our house! We plan to visit again over the next few days. Hopefully it will be less crowded, and warmer! I'll get more pictures to show then.

1:00am Updates That May Not Make Sense

2009-01-10T01:00:00.005-05:00

It's 1:00am and I'm still awake. Aubrey has a birthday party to go to at 10:00am tomorrow...err... today! Hopefully I can find the energy to roll out of bed, get myself and the girls clean, and be at the party at 10:00.

I spent much of the morning working on medical bills. Bailey isn't even 2 years old yet and she's had insurance through 3 different companies, which has made for some confusion. So, because of the confusion I've received several late notices. Some of those are from doctors I haven't even heard of. Oh well.

Florida won! Isn't that great? So, that means we have a happy home. I knew this game would be challenging, and I wasn't looking forward to game night, but it wasn't bad at all. Keith had a few moments of yelling and screaming, but who didn't?

I'm back in school. This term began on Wednesday. I was concerned that money would be too tight for me to return this term, but we worked it out. Thankfully, I'm able to use the same book from last term, I just had to get another lab book. I'm also only taking one class which will make things easier for me. It was really difficult last term taking two classes and working anywhere between 50-60 hours.

Work is going okay. I thought I had an opportunity to get closer to home, but that fell through. I know it will happen when the time is right, but it just isn't happening quick enough. I'd love to just be 5-10 minutes from home. Then, I could probably spend more time at work and show up there throughout the night to check on my employees without the dread of the long drive.

Aubrey and Bailey are both doing very well. Aubrey was coughing some this week, but it never seemed to bother her. Bailey has been staph free for a few weeks. Isn't that exciting! We've had a few issues with Aubrey and her desire to talk back. She refuses to do anything we tell her and she talks to us like she's a teenager. She's only 3!

Keith is doing okay. He'll be having his wisdom teeth removed on Monday. I'm sure he won't be feeling well after that. I had such a difficult time when I had mine removed many many years ago. The company he works for laid off several marketing employees and engineers. One of which was from his office. That leaves him as the only engineer in his office, so I'm hoping that means job security. These people are more victims of our economy. I remember a year ago when I was laid off. It was so difficult having to start over. I found it impossible to find a replacement job with the same position I held and my salary was also cut in half. I couldn't imagine having to find one now.

Well, I'm going finish watching Squid Invasion.

Goodnight.

Our Cheerleaders

2009-01-08T21:02:00.006-05:00

For those that know us, they know that Keith is very passionate about football. Especially, the Gators. Bailey and Aubrey also share the same excitement for the team. Here are a few pictures that were taken before tonight's game.

There was a time I had pictures of cheerleader Aubrey, but those are missing. But, as you can see she is a gator fan.

Aunt Kelli Visits

2009-01-02T21:59:00.004-05:00

My sister, Michael, and Peyton visited this week. Here are a few pics. Enjoy!

Make photo slide shows at www.OneTrueMedia.com

Build-A-Bear with Grandma Molly

2008-12-31T20:36:00.007-05:00

Molly was nice enough to invite us to a day at Build-a-Bear. The guys went to the FSU game, while we spent the day at the mall. It was really great spending the day with Molly. We hope to do it again soon.

The bear is stuffed, and it's time to promise to take good care of her.

Grandma Molly helped the girls clean their bears.

And dress them.

Perfect! Aubrey loves her bear!

Then it was time to wait for the guys to return from their football game.

This is Buster, the ~~horse~~ dog.

Hmm... a purse to search through.

Lip gloss! Can I eat it?

December pics

2008-12-26T22:01:00.002-05:00

These are just a few random pics from December.

Aubrey and Taylor.

Aubrey, Bailey, and Santa!

I think Aubrey is getting serenaded by Grant! I'm SO jealous!

Decorating the tree with Daddy.

Hard work!

2008-12-26T21:52:00.002-05:00

This took two days for Keith and my dad to assemble. Keith said it was made of sweat and blood. Lovely, eh? But, it's true. Keith was hit in the head with a piece of wood, then he drilled his finger, plus it was 80 degrees here in Florida! It's just too hot to be December.

Outside fun!

2008-12-26T21:36:00.003-05:00

Santa gave the girls a play set. Today, Keith and my dad finished assembling it. I guess Santa ran out of time.

It has two windows.
A swing just for Bailey

A slide.

A picnic table.

and a swing for Aubrey.

And a rock wall and rope ladder that somehow disappeared in the pictures.

Our Families.. more pics.

2008-12-26T21:25:00.005-05:00

Time to clean up! We have to get ready for the grandparents and uncles!

See she doesn't always look half asleep.

Bailey loves opening gifts! She's becoming a pro!

Bailey loves her air baby.

and tissue paper

Our Families

2008-12-26T21:07:00.003-05:00

Keith and I invited our families over for Christmas Dinner. Here are a few pics. There will be more to come in the next few hours.

Aubrey and her Uncle Bret playing with the puppets.

Aubrey, Uncle Bret, and Uncle Michael playing with the puppets. The girls really enjoyed spending time with their uncles.

Santa Came!

2008-12-26T20:43:00.006-05:00

The stockings are ready. Where is everyone? Still sleeping?

Ahh... there are our two sleepy heads. Good morning sunshine!

Santa left this for me!?!

I think they love everything. But wait! There's more!

What's so exciting?

Yay! A Barbie Jeep! What more could a girl want?

Christmas Eve

2008-12-26T20:22:00.005-05:00

We decided to make a Disney Princess Gingerbread House

Before we got up from the table the house fell over. So sad.

This face... so pitiful.

Words

2008-12-23T21:45:00.002-05:00

Leah has given me permission to post this on my blog. Thank you Leah, I couldn't have said it any better.

Most who know me also know that if they use the "R word" around me, or any derivative of it, I'll probably say something about it. I may, or may not, be nice about it, depending upon my mood at that particular moment. Some people I know, even family members, think it's silly for me to be irritated about it. "It's just a word...figure of speech, I don't mean anything by it." I even had one family member call her own son that, while Angela and I stood right there. Still...they think I'm overreacting.

No..I'm not. When you use that word, you're using my child as an insult. You're saying to be like her is a bad thing. That whomever you're calling a "r-d" surely would never want to be like Angela, or any other person who carries a MEDICAL DIAGNOSIS of mental retardation. That, my friends, is some incredibly insensitive thinking.

You wouldn't call people a "n-word", or a "fa**ot", or any other socially unacceptable slang term because you know they're wrong. They are words that can get you fired from a job, or sued for racial verbal harassment. Yet the "r-word" lives on. It's sickening.

Imagine my child walking through school. She will never hear one of her classmates call their friend of color a "nigger, and in her extremely racially diverse school she'll never hear someone call a friend from the middle east a "towel head", but it is EXTREMELY common for her to hear someone walk by and refer to each other as "retard".

Why is this ok? Why is it ok for you to model it for your children and why is ok for your kids to do it at school? Why is it ok to have what my daughter is be the butt of a joke every day of her life.

You may say, "Oh get over it. Grow a thicker skin." But if you're one of the people who use that word, what will you do the first time you hold your own new baby with Down Syndrome? Or your new grandchild, niece or nephew? Or you meet your boyfriends brother with Down Syndrome. Will you still use it anyway, regardless of how hurtful it is? Will you tell your own child "Grow a thicker skin child! You're going to be hearing this your whole life!!!!"

My child doesn't need to grow a thicker skin. She's been through more in her short 11 years than most adults will go through in a lifetime. What she needs is for people to be as respectful of her as they are of those of color or different religions. After all, the only difference between her and you is one tiny chromosome.

John Halgrim

2008-12-22T21:37:00.002-05:00

There is an article about this young man in our paper today. He was an amazing person. It's nice to see his wish granted.

Why Can't I Say Something?

2008-12-22T20:48:00.003-05:00

We had a sales meeting at work last Thursday. It was a "fun" meeting. A few games, a little serious stuff, and a gift exchange. There are 4 of us sitting at a table. Two of the people sitting with us have met my little girls, so I would think they would be a little more sensitive. One makes a few comments using the R word. How they and others are R's and then they both start making short bus comments. I become very sad. I wish I could stop wanting to cry when I hear these things, but I just think about Bailey and how she will face comments by people as she grows up. I know people use these words, I know people make jokes. No, I don't feel it is acceptable, but I know it happens. However, I would think people would be a little more sensitive around me. This isn't the first time this has happened at work. I've heard comments made several times before. Never by my employees, but usually by my equals. Last December I lost my previous job because it was purchased by another company and they did mass layoffs. I think I was spoiled there because I knew everyone very well and they were all there to see what we experienced with Bailey's birth and multiple hospital stays during those first few months. They witnessed our fears and struggles, and I think that made them more aware of just how strong Bailey is and how strong other children like Bailey are. Now, I just need to find strength to speak up when this happens.

Trish

Help Bring Dasha Home

2008-12-22T19:26:00.002-05:00

Please click on the Donate button on Dasha's blog to help!
Grab This Button

Confused

2008-12-21T22:13:00.002-05:00

We had another trip to the ER due to Staph on Friday night. This time it is at the sight of her button. A few weeks ago it was on her bottom. The incidence a few weeks ago was treated very aggressively. Every member of the family had to wash with special soap, we had to scrub the entire house, plus Bailey was medicated with multiple antibiotics and ointment.

Now... we have it again, and they've confirmed it is MRSA. The ER doctor was very positive it could be treated with Septra, however that method has yet to work in the past. Her pediatrician also called the hospital and explained her past. In tears I explained to him this would get worse or happen again, and I was treated like the crazy lady. The ER physician contacted her pediatrician, and I spoke with him on the phone. He also agreed with the method of treatment. So, here we are two days later and she now has a large oozing bump on her button.

I just hate that she has to continue dealing with this, especially since we aren't using the tube anyways!

Trish

The Mom Song

2008-12-21T22:11:00.001-05:00

The Mom Song from Northland Video on Vimeo.

Help Bring Kellsey Home

2008-12-21T13:40:00.003-05:00

Isn't she beautiful? Click on the button to learn more about her adoption.

Tricia

A Conversation With Aubrey

2008-12-17T21:26:00.002-05:00

Me: Is Santa bringing a gift for mommy?

Aubrey: No, you're too big to sit in Santa's lap.

Keith: Aubrey, I think you mean mommy is too old.

Aubrey: Mommy, don't kill daddy.

Me and Keith: Laughing uncontrollably.

I'm not sure where that came from. I guess Keith will probably be sleeping with one eye open tonight.

Trish