Ariella taking steps without help

Somethings you just have to see to believe. I have given several updates to many of you in person; as a result I thought this would be a good time to do another post. Below you will find a video of our miracle warrior. I do, however, recommend you sit down before pressing play because this will take your breath away.


Our little conqueror continues to make great strides, literally, in her growth and development. She recently had a series of  visits with her medical specialists and everyone continues to be very pleased with her progress. At this point no changes have been made to care plan. She will continue to get the majority of her nutrition through her feeding tube for the time being, however, she continues to eat more orally week by week. She is also progressing nicely with her sign language. She can sign -
Mom
Dad
More
Please
Thank you
Eat
Baby
Cracker
Milk

So as you can see her communication is getting much better. We are so blessed by what God is doing in and through our special angel. It is really hard to put into words just how much of a blessing her effort is, she works so hard all the time. She competes at everything and is such an inspiration and motivation. We wish you all could experience her effort and determination. Please continue to pray for her and check in on our special miracle. She really is a gift from God.













A long over due update

"You can't stop somone who never quits." This quote comes from Kirk Cameron's new film Unstoppable. This is the theme for Ariella's life, especially over the last couple of months. Our little conqueror continues to fight and win. As you may recall it was only a short while ago Ella aka Milagros, took on pnuemonia and kicked its butt. More recently she has had a runny nose and a bit of a cough, we thought that she might be getting sick again, but after a couple of days of fighting, she no longer has a runny nose or cough. She is an amazing little warrior that willingly takes on every challenge that crosses her path. She gets crabby, and fussy, after all she is still a baby, but even in her crabbiest she still just wants somone to sing to her, or play with her, or hold her. She is such a special baby and she is growing so much. She has real likes and dislikes. Ariella loves for you to sing to her, she likes "itsy bitsy spider" and "where is thumbkin", she likes lots of flavor in her food, but doesn't like anything cold. She doesn't always like people reading to her becuase she thinks she can read all by herself. She is learning sign langauge, eats more through her mouth than she ever has before, drinks through a straw and turns all the way around while sitting up. She is a wonder, God's gift and we thank Him for her everyday.
 

Wednesday August 21, 2013

Greetings to Ariella's Family, Fans and Followers

As you may be aware last week our family went away to the Lake George area for a much needed vacation. Even now we smile when think about the fact that we were able to take our amazing daughter, who has surpassed so many expectations, on a week-long vacation. It is a testament to God's grace and mercy and our baby's unrelenting desire to keep fighting. Though it took significant planning on our part, as the parents, to check, double check and triple check our packing list to ensure we did not forget any of her medical equipment; it was certainly worth the effort. We packed-up the car last Saturday morning and left for upstate New York around noon. More than half of the trunk space was taken up by Ella's medical equipment, and as it turns out we needed every piece of it. 

We arrived at The Glenn Falls Inn, the bed and breakfast where were staying, a little after 3 pm and were thrilled to see that our accommodations provided us more than enough space to set-up all of Ella's equipment and leave plenty of room for everyone else to sleep and move about the loft-style apartment comfortably. I won't go into exhaustive detail about every aspect of the vacation, however, I will absolutely share some highlights.The vacation featured several trips to Six Flags Great Escape, where Ella got to swim and ride several rides and believe me when I tell you she loved every minute of it. She loved the water park and got to ride several of the non-water rides with her mom and baba (brother). However, Ariella was not the only one to enjoy our vacation. 

Grandmabeula was fascinated with the decor at The Glenn Falls Inn, as we all were, but Grandma really enjoyed the accommodations. Big brother baba, got to do a lot of rides and even swam in Lake George with his dad. Mom and Dad were able to get on some rides and most importantly enjoy watching their children have a good time. The entire family enjoyed a scenic boat cruise around Lake George. Yet, in spite of all the good times and great memories the vacation was not without its challenges.

Mom and Dad successfully learned to give the baby her respiratory treatments on the go. We learned that we could put the baby on her ventilator in her stroller and continue to enjoy the amusment park or the lake or the outlets or whatever it was we were doing, without having to run back to the room in order to give the baby her treatments. In spite of our diligence in keeping up with the baby's treatments we did, however, have a set back. First big brother Charles spent most of the vacation battling some sort of weird cold/allergies hybrid attack that didn't cripple him, but certainly slowed him down. Momma Rachel was also fighting off a cold the second half of our week away and in spite of our best efforts Ariella also got sick. She started to spike a fever the last couple of days of our vacation. We returned home we scheduled an appointment with her pediatrician who ordered x-rays for her at Children's Hospital. The x-rays revealed, that Ella had fluid in her lungs, as a result she was diagnosed with clinical pneumonia. The good news is she has been on antibiotics for almost three days and has shown significant signs of getting better. Additionally, the doctors don't think she needs to be hospitalized so she continues to receive her care at home from our home care nursing team.

All told our vacation was a huge success. We certainly would have preferred that no one get sick, but considering that there was a point in time when Rachel and I were not sure we could ever take a vacation with our baby I have to say I am very proud of what were able to accomplish last week. Rachel is an amazing mother and wife. I am very blessed to have this incredible woman by my side. 

Go Team Botts!








Saturday July 27, 2013

On Saturday July 27th we celebrated our little warrior's first birthday and what an amazing day it was. The one thing that we had absolutely no control over, the weather, was absolutely perfect, all thanks to God. When we consider the fact that the week before her birthday was one of the longest and hottest heat waves on record and the days leading up to her party were non-stop rain, it is clear that only God could deliver a warm, but not humid summer day that featured a gentle breeze and lots of sun. Thank you Jesus.

Beyond the weather the birthday/miracle celebration was a day marked by the 3 f's; fun with family and friends. We were blessed to have folks come from Texas, Pennsylvania, New York and Massachusettes, in addition to all of the local nutmegers that were in attendance. The decor and design were coordinated and assembled by my godsiter and co-owner of Tolentino Sisters Event Planning, Laticia Tolentino. She did a great job of designing a theme and creating a number of orignial centerpeices and decorative features. The food was catered by our friend, Yadira Reyes, who did an amazing job, for those of your who missed it I just have three words for you; blueberry barbeque sauce, its as amazing as it sounds. Yadira has just opend her business, Home Cooked. Yadi's food was complimented by Titi Meri's world famous arroz con pollo. Gracias Titi. The catering was only matched by the incredible cake made by Ella's madrina Jessie. Ella's cake was nothing short of a masterpiece, it might be better described as a work of art. Jessica is also starting her own business, Cakes by Jess.  We are fortunate to have so many incredibly talented and gifted people in our lives.

We want to say thank you so much to everyone that was in attendance and to those of you that were unable to make it, but called or sent a card or gift. Thank you for the toys, clothes, gift cards, cash, thoughts, prayers and most of all your presence. We continue to say that all of the support and kindness our daughter has recieved and continues to recieve is why she has surpassed all expectations. We celebrate Ella's life and amazing progress as we also celebrate our increadible circle of friends and family that are full of faith.

Thanks, we love you all.















Ella's Eats Cake

We wanted to share some pics with you from Ella's bday celebration at home yesterday. 













Happy Birthday Ariella Christina Botts

Six months ago we were told you would probably not make it to see this day. Three months ago you had experts admitting they were wrong. Three weeks ago you started eating with your mouth and taking your first steps. One year ago your mother and I put our eyes on you for the first time and knew we were blessed more than we deserved. A year from now only God knows how much more you will bless and enrich our lives. 

HAPPY BIRTHDAY ELLA! FELIZ CUMPLEANOS ARIELLA!


Nos milagro especial



Wednesday July 17, 2013

With only a week before Ariella's victory celebration,aka, her first birthday party, we have been working hard to put together an event worthy of our miracle warrior. In typical Botts fashion we can't help but say thank you in advance to three key contributors that are helping to make Ella's first birthday party a hit. Madrina Jessie our baker, cousin Ticia our decorator and Yadira our cateror, thank you so much for everything you have already done and for what you are yet to do.

Being this close to Ariella's first birthday means we had to have another round of follow-ups with her specialists. To say that all of Ariella's doctors are pleased with her development doesn't quite capture how impressed they are at our conqueror's progress.  Each of her doctors were so impressed by her range of movement and versatility that in some cases they forgot they needed to examine her. In particular her neurologist once again reiterated how the initial diagnosis was clearly a mistake and her current development puts us on a completely different trajectory of  growth and development benchmarks. In fact when I showed him the video of our baby walking with her nurse Jennifer, he said "wow, look at that, she looks really good, I guess she will walk, actually she will walk". That's right the same man that had initially given our daughter a death sentence was smart enough and big enough to say - SHE WILL WALK. Thank you Jesus.

As we get closer to Ariella's first birthday, we are not simply celebrating her life, because it is quite possible that our baby could have lasted a year, but could still be in the hospital, she could be immobile, her health could be deteriorating, but that's not the case. We are not simply celebrating life, we are celebrating abundant life through Jesus Christ.

Thank you all for your constant support, continuous prays and financial investment. The upcoming celebration is as much a recognition and expression of gratitude for the village that has been formed to surround our baby with love, support, and financial help as it is a celebration of our miracle and all that she has overcome. Next week we celebrate the fact that we are all More Than Conquerors.