2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

A San Francisco cable car holds 60 people. This blog was viewed about 2,500 times in 2011. If it were a cable car, it would take about 42 trips to carry that many people.

Click here to see the complete report.


Summer fun with Bella!

Well, Bella let mom and dad have it today… citing it has been a couple of months since we updated her blog. Needless to say, she isn’t happy!! So, here’s dad writing to help get back into his daughter’s good graces!

Bella’s summer has been full of some fun stuff, the new house of course, various updates to her room (pink) and even a NEW big girl bed! We were able to get Bella out of her crib and into a new “hospital” bed. Worried about the cosmetic appeal that her new bed would bring, Laurie and I went over various options… however, when it arrived, it was surprisingly pleasing! We’ve done our best to make Bella’s room inviting to her friends instead of it reflecting a hospital room… and so far so good! Since summer began, Bella has had several visitors… in particular she hosted a small little swimming get together with her friends Elie and Madeline, and hopes to have another get together real soon! She’s been swimming at least 2-3 times a week and loves the water, and in fact she’s becoming quite the little aquatic diva… We went to see the new Winnie the Pooh movie, and have watched several others in our upstairs movie theater. However, the best part of summer so far has to have been… Bella’s first trip to the Circus! Ringling Bros. Barnum & Bailey came to San Antonio a few weeks back and it was fantastic! Bella seemed to really enjoy all the sights and sounds, and we are thinking we might need to do that again when they come back!

As for the health notes, Bella has had a very healthy summer. Upon a recent visit to the Pulmonologist, there has been expressed concern with the lining of her lungs and the increasingly large amount of secretion buildup she seems to show on her X-Rays… to combat that, we have taken to a new session of breathing treatments to add to her existing regimen. This includes a great little machine called, “The Vest”. Basically, it provides accelerated Chest Percussion Therapy via an air chambered vest controlled by a compressor. This machine really takes Bella for a ride, she practically is jiggled silly for 20 minutes at a time… we’ve dubbed it “The Jeep”. (It literally looks like she’s riding on mountain trails with a jeep) She absolutely loves it, and it’s pretty funny to watch her facial expressions. Other than that everything else is pretty much the same!

We are sorry for the delay in updating this, but we promise to do better soon… in the meantime as always thank you for the prayers and thoughts, and most importantly for reading! Bye for now!

Princess Bella gets a new castle

Hello everyone! Sorry it has been so long since our last update! ….No, we did not fall off the face of the earth 🙂 Things have just been extra hectic in the world of Bella over the past 2 months! We found out towards the end of February that we were going to have to move out of our house in a month (March 31st)! This would be a stressful situation for anyone, but it was double stressful for our little family, trying to find a new home that would work for Bella’s needs in such a short period of time. Also, during this time period, we were celebrating Bella’s 4th birthday, which was a huge milestone and event, and trying to get ready for my sister’s wedding in April. We looked at tons of houses in person and at least 2,000 online. Nothing was working, and we had a lot of frustration. We finally let go of the stress and anxiety of finding a house, gave our worries to the Lord, and then, a few days later, we were led to the perfect house for our family! We were able to get everything done in those 30 days we had and moved Bella into her new house!

Bella has made the transition very well! She absolutely loves her new house and definitely has the best room in the house, with French doors leading out to the pool area… only the best for the Queen! Haha!  She has a big back yard to play in and lots of storage for room for all her medical equipment. When we looked at the house, we didn’t know that there was a pool at first.. that was just a bonus! The pool is so great for Bella. It gives her body weightlessness and allows her to move around a little bit better and more easily. She has always absolutely loved the water, but it has always been kind of scary and stressful to take her to a crowded pool full of people. Although kids don’t mean to splash her, it is a pool and water flying everywhere is just part of the environment. So, it is kind of dangerous to have her in there with lots of other people where water can  get down her trach and make her very ill. This issue has always deterred us from taking her to the pool often. Now, she has her own pool where she can go swimming with mommy and daddy every day with no stress! We are so excited about this for her! We are even considering starting aquatic therapy for her, which many people throughout her life has recommended.

We are finally settled in and got to celebrate our 1st holiday in our new home this past weekend, Easter. It was a wonderful day for our little family. Bella, Jeff and I went to church in the morning to celebrate our risen Savior, some Italian for lunch, then we came home and had Bella open her Easter basket filled with lots of special goodies suited just for her! Later that afternoon, Bella got to go on her first Easter egg hunt ever! The Easter bunny hid eggs all over Bella’s new yard and she got to go hunt them with mommy and daddy! After that, per Princess Bella’s request, we watched Tangled as a family (I think Bella has seen that movie about 100 times so far…) Overall, it was the  perfect relaxing holiday where we all got to spend some wonderful quality time together and reflect of the incredible sacrifice Jesus made for all of us! We are so thankful for the gift of eternal life that he has made possible for us and we want to honor him everyday by appreciating all the small things in our lives!

This poem truly touched me when I needed it most.. it is as if Bella wrote it herself

I could not sleep last night… I laid down at 11pm and tossed and turned with my eyes wide open all night.. my mind raced in every possible direction. Feelings of anxiety, worry, uncertainty, stress.. were completely overcoming my mind. At 4:00 am, I decided there was just no hope for me to fall asleep.. so.. I just got up, turned on the computer to clear my head, and almost instantly came across this poem.. it is just what I needed and I felt that I have to share it with all of you!

“I Do Talk to You”

I know you can’t hear me… but I do talk to you.

And I can hear everything you say to me too.

I hear when you laugh, when I do something funny.

I hear you yell “Hooray” when I try so hard.

I hear you tell others how you’d never trade me for the world even with all the trials I came with.

I hear you thank God for what a blessing you have been given.

I hear you encourage me when I can almost do it.

I hear you cry, too, when it gets a little harder

And when you ask God “Why?!” your baby.

And I know you know I understand somehow.

And you know I listen when you talk to me too.

But, I want you to know, mom………

I do talk to you.

-Jessica Soukup 1998


It seems God knew just what I needed and led me directly there when I got up, showing me everything is going to be okay. It is almost as if Bella wrote this poem herself for me! A true sense of peace fell over me, a tear of joy for my special angel rolled off my cheek, I climbed back into bed and went immediately to sleep!

God is good, ALL the time!


Bella’s Big 4th Birthday Week… (the day and the party!)


I cannot believe my little angel is 4 years old! What a miracle! Each birthday celebrated for her is a huge milestone because, as I have mentioned before, she was never expected to live past 6 months. What a big girl she is now! Her actual birthday fell on a Tuesday this year. We had a wonderful, laid back, fun-filled day with her because she had a gigantic, extra special party planned for her on Saturday at Morgan’s Wonderland. On her actual birthday, she went to school, where everyone in her class greeted her by singing her Happy Birthday. Bella does not smile a lot, but when she does, it melts your heart and is a huge treat! While the children were singing her happy birthday, she got a huge smile on her face! This was the first time most of her classmates and teacher had ever seen her smile after being with her almost a year. So, I know it was extra special for them! I also know Bella must have felt the love for her in that room that led to her huge grin! I wish I would have been there to share in that magical moment!

After school (which we let her sneak out of a little early… after all… it WAS her birthday 🙂 ) me, her Daddy and her Grandmommy took her to the San Antonio zoo. It was her first time to ever go to the zoo, and she really seemed to enjoy all the sounds of the animals and strolling around outside. In fact, she was so soothed by the atmosphere, that she fell asleep halfway through the experience!! LOL! But it was ok… she only missed a few of the small animals and then woke up and perked right back up for the grand finale.. AFRICA! We watched the hippos for a long time and finally the gigantic elephants! They were dancing for her!

After all that excitement, she seemed pretty worn out. So, we brought her home, opened presents including her fabulous dress for her party (pictures to come), sang happy birthday, and had some cake. Bella was so tired that she just wanted one little taste of the icing. After all this, it was finally bedtime.. which she fell instantly to sleep as soon as her head hit the pillow! WHEW… WHAT A BIG AND SPECIAL DAY FOR A SPECIAL AND BIG 4 YEAR OLD!


After counting down the days until her party for the last month (yes.. we actually made a “countdown calender”), the big day finally arrived on Saturday! Lots of our family came in town to share in this special day including Grandmommy, Grandaddy, Aunt Sarah, Uncle David, Mopsy, Hey Hey, Great-Aunt Kathy, Great-Uncle Bob, and cousin Rob. Also, several friends came in town from other cities for the big celebration. Lots of Bella’s friends from school and out of school, teachers and teaching assistants, therapists, and many others that love and support our little girl showed up for her special day. It will be a day that will never be forgotten… a day when Bella’s family and friends, with and without special needs, all came together to have some fun and were able to play side by side without any obstacles. The day was filled with laughter, smiles, and silliness. What a wonderful memory was made for everyone when all the kids got to ride the carousel and the train together without any difficulty or special arrangements! Also, it was so touching to see everyone playing on the jungle gym together and just enjoying each others’ company. The kids just got to be kids, labels such as “special needs,” “different” and “not capable” were forgotten and our little birthday princess felt more love and inclusion than ever before! I wish I could know what was going on in her mind that day… but… the smile and serenity plastered on her face said it all!

Everyone that came colored a special page for Bella’s birthday book, and we had such a good time looking at everyone’s works of art! We will cherish this book forever and look at it often, reflecting on the amazing experience and love shown. We had some pizza, sang some songs (nice improv Daddy while waiting on the train), ate some cake and played A LOT. Miss Teen Texas was there, and they were all very sweet to Miss Bella… I guess they realized that Bella’s was the  real Queen 🙂 Morgan’s Wonderland’s staff and volunteers were so helpful and made the day extra, extra special! Thank you to everyone that helped out, especially Jenny and Isabel! YOU GUYS ARE AWESOME! Keep up the good work!! We will never forget it. Also, Morgan’s Wonderland put up “Happy Birthday Bella” on their huge marquee that shines over the highway and it flashed in her honor all day!… what a special little girl! Lots of our guests that came were so giving and donated to the park in our little girl’s honor.. Thank you all for your generosity! Helping keep this park open is the very best gift that anyone could give to Bella and so many other kids like her! You have no idea how much that meant to us!

I think that due to all the family, friends, helpers, love, and Morgan’s Wonderland’s effort/ priority to make an environment of inclusion and ZERO obstacles, that this was the very best day of our little Bella’s life thus far! Thank you everyone from the bottom of my heart! We love you all and will cherish this day forever!

If you have not heard about this magical, one of a kind place, you HAVE to check them out at http://www.morganswonderland.com   It is the most special place in the world to our little girl!!

Bella wants me to send her hugs and kisses to everyone and give you all a very special thank you from her! Xoxo

Bella’s 4th Birthday today… Please leave her a message!

Hey everyone! I can’t believe it is here… Bella turned 4 years old today! Please feel free to leave a birthday message for her as a comment, and we will be sure to read her each and every one of them! Thank you to everyone who has shown her so much support throughout her life! What a miracle… 4 years old today!

Sweet Bella is about to be 4… what a MIRACLE!

Well, another year has passed and another milestone approaches for our little miracle! Bella will be turning 4 on Tuesday, March 8th. I cannot begin to describe the joy that this little angel has brought to each second of our life over the past 4 years. She has taught me more than anyone else could ever possibly teach me. She has touched so many that know her or even know of her, and she and her story brings hope to those who feel there is none!

When we were graced with our beautiful little Bella on March 8, 2007, she was not like other children. She had severe medical issues and many abnormalities. Over her first few months on this earth, her prognosis continued to get worse. We were told by her physicians that she most likely would not be able to live past 6 months of age… she just had too many complications. We decided we were going to cherish every second with her and enjoy her while we had her. We celebrated weekly birthdays (full out with cake, icecream, decorations, … the works, whether in the hospital or at home) the first 4 months; then monthly birthdays the first 2 years and now 1/2 year birthdays. Bella continued to grow and would rotate between severely ill and perfectly healthy during her 1st year. Bella has fought so many things over her short life thus far… BUT no matter what challenge and “impossibility” is put before her, she always conquers it and comes out stronger. All of the doctors tell us “we don’t know what you are doing with her, but whatever it is, keep doing it!! ….because there is no medical reason why this child should still be surviving and thriving the way she is.” I can tell you the reason for her living so much longer and healthier than expected and it is one word… GOD! He definitely sent his angel Bella here to this earth to teach all of us so many things. She is a gift and we cherish every second we get with her! Any time any of us get down, get frustrated and think things cannot get better, we need to look at this little miracle for some inspiration and remember that God WILL always take care of us! It is all in His plan!

Now, Princess Bella will be 4 years old! What a blessing for our family! She is so healthy and happy right now! And… she is getting to have her birthday party next weekend at the greatest place on earth… Morgan’s Wonderland! It will be a day that I don’t believe anyone will ever forget!

Previous Older Entries