Good Friday March 29, 2013

Today was a "good" Friday indeed. Our precious Ariella had a good day in spite of the fact that our lil momma got three different shots at her doctor's appointment. She is such an amazing little warrior, she is able to deal with so much and she takes it all in stride. She is so content all the time and rarely complains about anything. She is still a baby, however, so there are certainly occasions when she is fussy or just doesn't want to be bothered, but those occasions are few and far between.

As we reflect on what this day means and we consider the sacrifice that Jesus made for all of humanity more than two thousand years ago we so grateful that his death has made a way for us to have a full life, not just live. Because of Jesus' sacrifice, Ariella is defying convention.

As we look to God and celebrate what his son accomplished for us we also want to thank and celebrate all of you for your financial support and thoughtful consideration. We can't simply ignore what you have done and are doing for our baby. You all have been so generous it is difficult to put into words. Please know that we do not take your investment lightly. We recognize that you are making a sacrifice. Every time we open an envelope we pray that God would double or triple the return on your investment in our family. And I know that He will. I also understand that you are not doing it for that reason. We know you love us and love our baby.

Thank you for telling your friends and colleagues our story. Thank you for thinking about us. Thank you for caring enough to take time out your day to pray for us. Thank you for honoring our Lord and Savior by displaying amazing gestures of Christian love. We are still getting used to our new life and making room for all the supplies and devices needed to provide Ella's care, but we are adjusting because of you. Today is Good Friday in deed.

Monday March 25, 2013

Today we celebrated Ella's Mommy's birthday. What an amazing year it has been. We are so grateful to be blessed with such an amazing woman who has consistently and generously given of herself in order to make sure that this family has all that it needs. We were so excited to have the opportunity to express our love and gratitude towards Rachel. We celebrated by taking Ella out for her first family walk since she was discharged from the hospital. It was a bright and brisk day and while it got windy towards the end of the walk it was nice for everyone to have the opportunity to get some fresh air together. It was especially nice for me to provide my wife some time to enjoy her children without having to worry about preparing meals doing laundry or any of the other burdens she carries on a regular basis. Princess, your family loves you a great deal and thank the Lord that He has kept you with us for one more year. I am excited about what the future holds for you specifically and for this family in general. God bless you Rachel, happy birthday my love.

Friday March 22, 2013

As the week draws to a close we have made progress in some areas and continue to face challenges in others. We have one more week under our belt, which means one more week to get acclimated to our preciosa being home and adjusting to our new routine. Life at casa de Botts is still pretty topsy turvy though. At the beginning of the week we thought we had full nursing coverage during the week so Rachel and I could continue to work. However, we learned half way through the week one of our weekday nurses decided not to take our baby's case leaving us with a gap in care. Having said that, because our God is so good and never leaves us nor forsakes us; one of the other nurses, our friend Donna from CCMC, happen to not be working at the hospital the day we needed coverage this week and she is also available to help us out next week as well. So at least for next week we are covered, however the agency still needs to find someone willing to work with our baby every Thursday during the day so we can work. We trust that God will fill the gap.

HILARIOUS!

 

As we work to try and lock down our nursing schedule, which ultimately determines our overall schedule, we still need to make room for Ella's supplies and come up with an organized way or storing, accessing and reordering everything that baby girl needs. There are a lot of pieces to her equipment, some of it needs to be changed on a daily basis; for example her food bag, which is run through her feeding pump. Some of the equipment is changed on a weekly basis, like the circuits on the ventilator. While still other components needs to be washed and cleaned out regularly like the canister and tubing on the suction machine. Fortunately Ariella's mother happens to be one of the world's foremost experts on developing systems that promot efficiency and organization for a specific outcome. Rachel is amazing. Two years ago she developed a two year plan to help us get out of significant credit card debt. Because of her meticulous attention to detail and our commitment to the plan we actually finished ahead of schedule. If anyone can develop a plan to capture and reorder all of the necessary pieces to Ariella's machinery for her treatments its my Rachel.

Monday March 18, 2013

Ariella has been home for a week and as a family we are slowly starting to get our feet underneath us and get acclimated to having our little warrior at home all the time. We have been blessed to have some very skilled and compassionate nurses working with our baby while we are at work during the day and overnight a couple of nights a week so we are able to sleep. Though the schedule is still being tweaked we are grateful to have the support that we have. Our baby has been slowly adjusting to life at home. We have noticed that in particular for the last several days she's had increased secretions and required more suctioning than usual. At this point we are not concerned that it is anything more than just Ella getting used to being back home. Prayerfully in another couple of days her secretions will reduce and we won't have to suctioned her as much. That aside we are so blessed to have our dear Ella back home.

So adjusting to life with our baby is one thing, at the same time we are also working hard to accommodate all the additional equipment and supplies that are needed in order to support Ella's treatments and continued growth. Rachel likes to describe the babies nursery as a mini ICU. Now we have to find a place for all of the additional equipment, inventory of supplies and medications that support our little warriors progress.

We pray and look forward to the day where it won't take so much to keep her stable, but until that day we are so grateful to our God for utilizing the generosity of each and everyone of you and as well as the City of Hartford and Anthem Blue Cross Blue Shield in helping us to ensure that Ariella has everything that she needs to continue to grow big and strong. She continues to be a very good baby only complaining when she is uncomfortable or when we are suctioning her, which is more than understandable. Her eyes are still full of so much joy in life our home is full of more life because she's in it all the time.

Corrected E-mail Address

We need to apologize to all of you that may have tried to contact us regarding tickets for the fundraiser or for other general purposes using the e-mail address we provided in Ariella's brochure. The correct e-mail address for all things Ariella is -

iammtc837@gmail.com

Again please forgive us for this considerable oversight. The correct e-mail is active and checked regularly. Thank you all for your patience.

Upcoming Fundraiser

We are three short weeks away from Ariella's pasta dinner and are very excited. First of all we wanted to thank everyone for your willingness to donate to Ella's trust. We have been so humbled by the donations we have already received, you have helped our family avoid almost certain financial hardship as a result of Ella's most recent hospital stay. By way of a quick update we have met with an attorney who is willing to work with us to set-up Ella's trust. We are also in the process of setting up a Paypal account specifically for the trust so we can accommodate those who would be interested in online giving.

As it pertains to next month's pasta dinner fundraiser we are very grateful to those of you who have expressed a willingness to donate towards the silent auction, we really appreciate your generosity. At this point we have nearly 30 items for the silent auction, how amazing is that! Because we have so many items for this auction we think its best if you are interested in donating auction items that you do so at the next event, we hope to organize a couple fundraisers a year so long as Ella has the need of them. However, what we really need is for people to buy tickets for and attend the dinner and once at the dinner to bid on auction items. So many of you have expressed an interest in attending the dinner, but have not purchase tickets. As a reminder they are only $15 for adults,
$10 for children and for families of 4 or more each ticket is only $10, all children age 3 younger are always free. You can purchase tickets directly from Rachel or myself, Nilda Havrilla, Jessica Rodriguez, or Lisa Golia. If you are out of town we will be happy to mail your tickets out ahead of time or save them at the door for you, just let us know which you would prefer.

Your prayers, care and generosity have made all the difference in our little warriors life. We would not have made in this far without you and we can't go any further on our own. Thank you for generous investment and support. God bless us everyone.

Tuesday March 12, 2013

Ariella has been home for 24 hours and it's such a blessing. Yesterday when we got home everything moved so fast it felt like we were in a whirlwind. We got home around noon, which meant our baby had to receive her respiratory treatment. Because we had everything already setup and developed a solid plan ahead of time we were able to administer the treatment with no problems. Just as we completed her noon treatment the supervisor from the nursing agency, Allyson, who will be managing Ariella's case, arrived at the house. At the same time the representative from the medical equipment company, Heidi, who we absolutely adore, also arrived. Heidi was there to make sure we were all set with the equipment she delivered last week as well as make sure the nurses and supervisor were comfortable with the new equipment as well.

We need to tell you that truly the favor of God is all over us. First of all Heidi, who works for Professional Homecare Services, the medical equipment company, has been an absolute treasure. She has worked so hard to make sure that we have the best of everything we need to provide Ella's care. She has gone above and beyond to make sure that we're comfortable using all of the equipment. Furthermore, she spent almost three hours helping Rachel arrange the nursery last Friday when she delivered all of Ella's medical equipment. Just to make sure that we were optimizing the best use of space in our nursery. God bless you Heidi and thank you so much for all your love and support.

We also met the nurse who will be caring for Ariella during the day on Sundays, Mondays, Tuesdays and Wednesdays - Amanda. The name of the agency that will be providing the shift nursing is Interim. They are on the web so you should feel free to look them up. Amanda will be providing a large portion of Ella's care during the week while Rachel and I are at work. Amanda is a real sweetheart. She has a little girl of her own who will be turning one in a couple of weeks. Amanda is young and quite skilled, she is kind and very compassionate. Most importantly she is in love with our baby. We feel very comfortable with Amanda caring for Ariella while we are at work Monday through Wednesday. The other blessing is one of the nurses we met while at CCMC, Donna, who provided a lot of lactation support to Rachel is currently scheduled to work Friday afternoons. We love Donna, she is great. As of right now we are not certain as to who will be working Thursdays during the day and no one is scheduled for Fridays; we are hopeful that Interim will come through for us very soon to fill that gap in the schedule. In the meantime our employers continue to be very accommodating in ensuring we are able to provide Ariella the care she needs while maintaining our employment.

We continue to be richly blessed throughout this entire process. Thank you Jesus for continuing to place such amazing people in our lives to help us raise your special child. Keep praying everyone, it works.

HOME!

The day is finally here, after spending 65 days in the hospital Ariella is coming home. There is no way we can effectively describe this feeling. It is a swirl of excitement, apprehension, anticipation, joy, enthusiasm and just a bit of fear. Not fear as in we're scared to bring her home, more fear of the unknown. For the foreseeable future our lives are going to be completely different. There will be strangers in our house all the time taking care of our baby. There will be several nights a week when my wife and I will have to sleep apart because one of us will have to administer Ella's respiratory treatments over night. Every time we leave the house we will have to think about how long we will be out and what kind of medical equipment we will have to bring with us. We recognize that this is nothing new and there are many families that have to do this and have been doing it for a very long time. But we haven't and to be certain it will take some getting used to, but through Christ Jesus we can do all things. As Ariella's Nana Ruth Davis likes to say "God didn't bring you this far to leave you" and we know He hasn't.

As we prepare to transition over the next couple of hours from hospital to home we need to express our gratitude to the Connecticut Children's Medical Center staff and volunteers. During Ariella's stay at CCMC she heard live music from some very talented musicians. She received massage, occupational/physical therapy treatments, our family received a free photo shoot and during our baby's Christening someone generously donated the hospital's catering. While we won't go so far as to say there were times we forgot we were in a hospital, I will say CCMC did as much as they could to make our stay as comfortable and as safe as possible. We mentioned it briefly in another of the more recent postings, but it bears repeating. The hospital went to great lengths to ensure that Ella remained healthy during a very difficult flu system. To keep a child with a compromised respiratory system healthy and progressing during a brutal winter takes and act of God and the commitment of the entire hospital team. We do not take any of your efforts granted.

A final word for the team from MS 7. As we were preparing to move from the PICU to the seventh floor, a month and a half ago, we were somewhat crestfallen because we had come to love the PICU staff and recognize the unique level of care and support that our baby was receiving. In addition we had been so well taken care of by the team on the sixth floor during our previous hospital stays there was certainly some trepidation on our part when it came time to leave and move upstairs. Truthfully our expectations of the 7th floor staff may have been unreasonably high. Having said that I am happy to say we were more than satisfied with the care and support Ariella received from the nursing, respiratory and pulmanology teams. There were a few individuals that stand out and took extra special care of our baby; Mavia, Kristen, Lady, Shirley, Antoine, Heidi, Cindy, Becky, Theresa, Lisa, Dr Lapin, Dr Bleckner, Dr Collins and Dr Bhandari. Special shout-out to Lyndsey and Kim for hooking us up and Jodi for coming to mom's rescue. We are very grateful for all the care and support we have received at CCMC. You are wonderful people. Our lives, certainly Ariella's, have been made better from our time together. While we will certainly miss your smiles and care and concern we are so happy to say God Bless you and keep you, may Heaven's face smile upon you. WE ARE GOING HOME!

Saturday March 9, 2013

The week is quickly drawing to a close and we are 24 short hours away from bringing our baby back home. By in large Ella had a very good week, her therapy sessions continue to be very productive; above all thanks be to God she has stayed healthy. The hospital has been very cautious with our precious little lady and managed to keep her germ free during a flu epidemic.

We are also glad to report that we have nearly finished with all the preparations needed in order to safely bring our boo home. We have received all of her medical equipment and have setup her room in such a way to accommodate all the equipment. This way Ariella can get her respiratory treatments in the comfort of her own room.

Ella is still conquering

I hope you have not tired of reading about the latest and newest exploits from our precious lil lady because I don't get tired of writing them. Ariella has already done so much in such a short amount of time. In the last two months she has beaten back death, learned to sit up, and grew an interest in trying to eat. Ella is rolling over onto her side and even holding herself in the side laying position for several seconds at a time. One of her biggest strong holds has been her inability to hold her head up from when she is flat on her stomach. Well you can now add holding her head up from all fours to the list of major milestones. This little girl works so hard and pushes herself to such great lengths, you can't help but be inspired in her presence. What an amazing gift from God.

We also have more good news to share, God willing we expect to bring Ariella home this coming Monday, March 11th. To God be all the glory. We are so excited and so blessed to have reached this place in our journey and yet we still need your prayers. As excited as we are to bring Ariella home we have to share with you our frustration over the situation. You may recall from a previous posting we made everyone aware that we were approved for 16 hours of shift nursing 7 days a week. It has taken several weeks to staff the shifts that we need coverage in order to bring Ariella home and provide her the support and medical care she requires. It seems as though we have many of the shifts filled although not all of the critical shifts that we need in order for Rachel and I to continue to work. Moreover we don't actually get to meet the nurses that will be coming to our home to provide care for our special little lady until the first day they show up for work. We need your prayers that God staff the shifts with nurses that have His heart and share our affection and commitment to our daughter. I am certain that everyone we meet will be more than qualified; it's just a little uneasy as parents to welcome someone into our home and family to provide care for the most vulnerable member of our household without any previous introduction. Pray for our peace and God's guidance through this process.

We are so thankful for everyone's generosity and support during the last couple of months and we certainly will continue to lean on you moving forward. We are so blessed that Ella's village continues to grow day by day. God bless you.

Pasta Dinner Fundraiser

Fundraiser Pasta Dinner for

Ariella “God’s Lioness” Christina Botts

     

April 6, 2013

St. Mary of Czestochowa Parish

79 South Main Street, Middletown CT

Dinner Seating hourly from 5:00 -8:00 pm

Adults (ages 18+) - $15

Children (ages 4 - 17) - $10

Young Children (3 and younger) - free
Families of 4 or more - $10 each (for every one older than 3)

There will be a silent auction featuring:

Original handmade jewelry

Free airport parking

Dj service for weddings or special occasions

Live Bands
Coffee Maker

Gift certificate to stores and spas

And much more...

Please come support a very worthy cause. Your investment could save a life.

Donations can be made out to Rachel and/or Charles Botts for Ariella’s Trust Fund.

"One Protien Chain at a Time"

Sunday March 3, 2013

Our baby had kind of a challenging weekend. Her Saturday started off well, she got a special visit from her daycare provider who is also like an adopted abuelita, Nana Carmen. Carmen got to spend some good quality time with the baby Saturday morning. However, as the day went on our little warrior started to have some challenges, including increased secretions and some brief dips in her sats. The difficutly continued into the night and the eight o'clock treatment ended up taking almost two hours to get Ariella comfortable and her secretions to a level where she could sleep peacefully. The rest of Saturday went ok and Sunday was a better day. After meeting with some of her doctors Sunday morning we came up with a plan to watch her closely and work hard to get back on top of her secretions. The rest of Sunday went well and by time it came for her to go to sleep for the night, her secretions were under control and she went on her overnight mask with no problems.

This weekend was also about getting the house prepped for Ella to return. After receiving some good advice from the homecare company  representative we decided to move Ella's nursery from upstairs to the down stairs guest room and we reclaimed the master bedroom. This was a considerable undertaking that meant moving very heavy bulky furniture around and repainting both rooms. Well thanks to an amazing group of guys we were able to complete the work this weekend. We want to say a big thank you to Tom Havrilla and the team from the Anointed Tabernacle - Big Mike Johnson, Reggie Penson, Tyjuan Hutchinson and Warren Handy. I have to say a special thanks to Big Mike for working with the big group on Saturday to get the bulk of the work done and then coming back Sunday to help Dad finish off the project. Becuase of the support from these men, our home is basically ready for precious Ariella to come back. We are so grateful to you guys. Love you brothers.

Friday March 1, 2013

Well, Ella decided that 4 o'clock this morning was a good time to wake-up; she and her mom had themselves a little early morning party. As you can imagine she did not stay awake from 4, but that did set the tone for the day. She had her usual parade of therapy sessions in the morning, which positioned her to get a good nap in during her 12 o'clock treatment. She remained in relatively good spirits throughout the rest of the afternoon into the evening, however she hit a wall around 6 pm and got very irritable. Dad tried playing with the baby, reading to the baby, even holding the baby, but not much worked. In an effort to not send Ella all the way over the edge, dad gave her a nice bath at 7 and began her respiratory treatment by 7:45. While it took some doing to get her night mask on properly, without any leaks and at the same time comfortable, our baby did settle down and finally knock out before 8:30 pm. One more day in the bag, one day closer to going home...

Christmas in February, Ella opening a gift.

Friday February 22, 2013

What a great day. Finally after getting a good night's sleep, our baby was all smiles this morning and throughout the day. Her therapy sessions continue to be very productive, we are seeing great progress in Ariella being able to sit up on her own for significant stretches of time. We have also observed her holding her head up from being on her stomach; not necessarily while being completely flat, but when she's inclined laying on her daddy's chest she does hold her head up, these are great strides the warrior princess is making.