Wheelchair Van Fundraiser

Greetings Team MTC,

Life with Ella the Conqueror has been as busy and full of blessings as ever. She has had to deal with a couple of different bacterial infections, but true to form she has come through. We find ourselves in a position to take important steps to improve our families mobility and overall quality of life. Please use the link below to our GoFundMe page that describes a new fundraising campaign to help our family afford a new wheelchair van. We cannot do this without your support. Please share the link with your personal networks. Every contribution brings us close to our goal.

We Are All More Than Conquerors

Visit our GoFundMe campaign 

More Than A Conqueror Update - 5.16.16

Peace and Blessings Fellow Conquerors.

Ella has been home for a little over two months and is doing really well. She is finally getting back to the form she was at when she left Hospital for Special Care. She is spending more time off of the ventilator breathing entirely on her own. Her physical strength is returning as well. This weekend she came really close to standing up from sitting in one of her chairs. Ella is such a remarkable little lady with an indomitable spirit. There is absolutely no quit in this little girl. However, life is not without its challenges. Ella does have some sort of respiratory infection she has been fighting off for the last several weeks. Her progress is slow, but some progress is better than none. And in spite of this illness she continues to fight and win day after day as she gets stronger and becomes less dependant on the ventilator.

Since coming back home Ella has returned to school and is loving it. Her classmates and teachers are as happy to have her back as she is to be back. In addition to going to school, Ella is also receiving in-home therapies to increase her strength and dexterity. She is seen by a speech pathologist and occupational therapist a couple of days a week at home. We are currently looking for a physical therapist that does in-home care, in the mean time she will be getting PT back at CCMC once a week.

As you can see Ella the angel warrior is doing quite well. We are not where we want to be, but we further along than we were. We covet and appreciate your prayers. They keep us encouraged and motivated to push Ella to do more each day.

We Are All More Than Conquerors

Ella update - March 10, 2016

We have been home for three days and it has been an adventure. To say that having Ella back home has been a bit of a transition would be a great understatement and yet I am still extremely grateful that my family is all back together under one roof. We are all trying to find our way in our amazing new home that is not quite unpacked or all the way organized. That all-important routine that most families fall into still seems to elude us but I know we will get there. Ella is so excited to be home in her pink room and play with her toys and read her books and get access to her family on a regular basis has been great. It is also great to be back under the compassion and care of our skilled home care nurses. We are so blessed to be partnered with an amazing nursing company and have great nurses working with us and caring for our baby I am certain it will only be a matter of time before her strength and mobility return.

We also had an important meeting with members of Ella's school yesterday and it looks like she will be returning to school starting Monday morning. It will be so great for her to see and interact with her school friends again as well as get some time outside of the house. Additionally our family returns to church for the first time in 3 months this Sunday. What a great celebration that is going to be. If you happen to find yourself anywhere near Manchester Connecticut this Sunday I invite you to attend morning service at Faith Tabernacle 110 Utopia Road Manchester CT at 10 am, it's going to be epic.

We are grateful for your continued prayers and concern please continue to keep Ella in your minds and in your hearts, we are back home but there is still so much work left to be done.

We are all more than conquerors

Thank you HSC

Well our time was somewhat brief, but over the past two and a half weeks we have made some great friends at the Hospital for Special Care. I'm not even going to attempt to name names, I will say though we have been incredibly impressed and fortunate to work with such a great group of skilled professionals. Your organization cares a great deal about the children under your care and we got to witness that first hand. Our family experienced the benefits of your skill and compassion. Ariella has made some great strides under the watchful care of the PT's, OT's, RT's, RN's, CNA's and Docs at HSC. Thank you all for making our baby stronger, more independent and most importantly well enough to return home. Your organization does great work and we thank God for the time that we got to spend together. From our Family to yours Thank you.

We are all more than conquerors.

Tomorrow is the big day

It is finally upon us; tomorrow Ariella comes home. It has been a long, incredible journey, full of plenty of highs and lows and thanks to the unwavering support of those of you that follow this blog our baby is much better today then she was several months ago. Mom and dad spent a good portion of the weekend getting our little angel's bedroom together. It is rather fortuitous that 2 years ago Grandma Denise bought our baby a twin bedroom set not realizing that her bed, at the time, converted to a full size bed, however that bedroom set now belongs to her little brother Daniel and Ella's current bedroom includes a twin bed. Thank you grandma Denise we now have a beautiful set for our baby's new bedroom.

However if it weren't for a group of incredibly special and talented people I don't know if our house would be in the condition it is in in order to welcome our little conqueror home. My mother, Ruth Davis and stepdad Ike Davis along with very very close friends and family Uncle Philip Reeves and Auntie Theresa Reeves, Auntie Karen and Auntie Gretchen have spent and continue to spend countless hours painting, building walls, shaving doors, hanging doors, restoring doorways and trim, and more. So much needed to be done in order to make this house feel like a home and my parents along with our extended family have made that possible. I truly cannot say thank you enough mom and Ike,  Phil and Terry, Karen and Gretchen, you have given of your time, you have traveled hours over the highway and because of you when Ariella returns tomorrow she will come not just to our new house but she will come to her new home. Thank you all so very much.

This by no means marks the end of this blog we will continue to provide regular updates as to how ella is adjusting to life at home and how we are adjusting to providing the care and support that our angel needs in order to thrive and be everything that God has called her to be. Please continue to check the blog regularly for updates photos and pictures.

We are part of an amazing team. My daughter is alive today due in no small part to all the support, encouragement, love, prayers and affection that each of you have shown us in your own unique way. It is my prayer that no one has to experience what we have had to endure but if you should find yourself in an extremely difficult situation I would further pray that you feel and experience the love and support that my family has felt an experienced over the last two and a half months.

I don't doubt that God is real because I have experience is unconditional love through the amazing support I have received from all of you - Team Ella.

We are all more than conquerors

Making great strides...literally

As I promised I wanted to provide some more updates. Our little angel has made some great improvements over that last couple of weeks under the care of the team here at HSC. Her OT, Ms. Dawn and PT, Ms. Carrie have done amazing work with the little conqueror.

It's Official we are going home...

I know the updates have been rather sparce this week. We are grateful for your patience and understanding. This has been a busy and full week all the way around. Ella had some more special visitors, Danielle and her mom Ms. Shavonne stopped by and brought Ella more fun puzzles to do. Thank you Shavonne and the rest of the Sims family for your generosity. We also want to thank Susan and Bill Yeske for their visit last week. Bill has had a trach for more than 15 years. It was nice for Ella to meet a big person with a trach and see how wonderful life can be with a trach.  

Ella's update - February 27, 2016

A great morning that kicked off a great day. Ariella continues to do very well with her time off from the vent. This morning we spent some time out of her room playing and reading books in the common area. Today was another full day where we had some special visitors along with lots of playtime and activities. Pastor Josh and Mrs Kirsten stopped by and played bubbles as well as brought Ella a special gift. Today was also a special day because Ella spent most of the day with mommy bonding and playing together. The other good news to come from this weekend is that we have a tentative discharge date. We are working towards being able to return home next Monday March 7th. Ella is healthy enough to go home and mom and I have completed all of the necessary training. While I certainly do not want to outpace God's will and timing I am absolutely focused on getting us home on or before next Monday. You all have been praying so faithfully and so strongly with us and I would ask that you continue to hold us up, we are very close, very very close. Thank you for faithful support. 

We are all more than conquerors.

Ella's update - February 26, 2016

What a great day. Ella had a day filled with friends, fun and progress. The day started with an hour off of the ventilator and no breathing support at all. Our warrior maintained herself quite well during that hour. She had several visitors throughout the day including our friend Cindy who came and dropped off some puzzles and played with Ella long enough to let daddy shower. Thank you Cindy.

Nana and Poppy also drove down from Massachusetts to spend some time with Ella. Their visit coincided with Ella's second hour trial off of the ventilator. This gave her the opportunity to go outside with her to visit the fish pond. Though we were not outside for very long it was great to get some fresh air. The day ended with a special visit from Leila, Dasha and Princess - three friends from church. And the ladies brought a very special present with them a bear named Super Ella. When Ella received her bear she started to hug it and say "this is like a super me". Our angel is super. Everyday she gets stronger, everyday she does more, everyday she takes a step closer to getting back to where she was before this episode occurred. 

To illustrate exactly what I mean you can see or rather hear for yourself just how well she is doing. Enjoy the video clip below that demonstrates how well our baby is doing. We are all more than conquerors.

Ella sings "Let It Go"

Ella's update - February 25, 2016

So in addition to all the great progress Ariela has made over the last week, she also took time to plan a surprise party for her brother. Charles is a teenager now and turned the big 13. Ella was very excited to have the opportunity to decorate her room and celebrate her brother's birthday. It was that much more special becuase Charles got to take a walk with his younger brother and sister through the hospital floor.

In addition to planning a surprise party, Ella has also been doing very well with her therapies and rehab. In fact Ella has successfully completed 4 separate trials of being completely off the ventilator. This is called a trach mask trial. During theas trials Ella has had increased secretions, which is normal, but still a little nerve racking. Other than some coughing and more secretions she has passed with flying colors. 

Though Ella's muscles continue to get stronger we are struggling with her feeds. She has had a couple episodes of vomiting and her stomach is not emptying very quickly. The doctors here are trying a couple of different things to help maintain her nutrition and also speed up the process of emptying her stomach. This was a problem at Yale while we were in intensive care as well. For now she is doing ok, but this maybe something that we have to address after we are back home.

Every day that Ella does well is a day closer to being released and sent home. Keep praying, we are all more than conquerors. 

Even more #beards

Uncle Greg has joined the team. Ella is so excited to see all these beards. Keep the pics coming. #BeardsformyBaby

More #beards

Uncle Troy has joined the team #BeardsformyBaby

Ella's update - February 23, 2016

To say they things are going well would be a slight understatement. Ella is making great progress. She continues to receive occupational and physical therapy daily along with speech pathology. She has been introduced to a new device called a prone stander that allows her to stand up with assistance. This has been exceptionally beneficial, not only for her muscular development, but also for her psychology. Ella has become more comfortable with her trach and more importantly she is open to allowing us to do the necessary maintenance and interventions to ensure that it stays clean, sterile and functional.

Additionally, in typical Ariella fashion she is winning the hearts of her nurses and therapists. One of her nurses, Miss Lucy, is responsible for the beautiful braid that you see in the picture. We are grateful for a dedicated and compassionate team of health care professionals that are going to help us us get our baby back home very soon. Continue to pray that with each day she grows stronger and we grow more competent so that we can all be home soon. We are all more than conquerors.

Ella is making even more progress

Ella's update - weekend addition February 20-21, 2016

Hello #TeamElla, well we made it through one more weekend which means we are that much closer to getting home. Unfortunately Ella did not get to do much in the way of moving around this weekend, however the entire family was the hospital all weekend so she got to spend lots of quality time with her brothers. She even had a special visit with Titi Nilda and Mima, who came bearing gifts. Among the presents was a beautiful butterfly bracelet from our friend Netmari. Ella was very excited to receive such a beautiful gift. Thank you Netmari for such a beautiful gift.

Mom and dad did a lot of Ella’s treatments this weekend including caring for her trach. There is not much of a learning curve in providing her respiratory treatments, however, doing them with the trach in place does take some getting used to, but with each day we get more comfortable. We continue to progress forward.

We are all more than conquerors.

Getting thicker...

Time is quickly coming to a close. As Ella continues to improve and mom and dad get trained the warrior will be home and the #BeardsformyBaby campaign will be ending. If your are growing your beard let us know. Tweet a pic of face fro to @wearemorethan and don't forget #BeardsformyBaby.

Ella's update - February 19, 2016

Hello Team Ariella. We are in full rehab and training mode. Ariella is seen by an occupational therapist and a physical therapist everyday in addition to lots of play and activity with her respiratory therapists and nurses. Meanwhile mom and dad are learning trach care and will be trained very soon on how to operate and maintain her new ventilator. 

Training is going well and things are moving along in fact dad did his first trach change earlier today. The procedure went quite smoothly  however our angel continues to have stomach problems and immediately following the trach change because she was so upset and anxious she ended up vomiting all of her morning feed. This was a bit of a concern for the doctors given that at the time of the train change  her feed been finished for almost two hours. There should not have been nearly as much formula in her stomach as what she threw up. The doctors are thinking that it may be taking her too long to digest the formula she's receiving in its current concentration. She is currently on Pedialyte and the doctors decided to dilute the concentration of formula she is getting in her feed in the hopes that they can settle her stomach over the weekend and have her evaluated by their dietitian on Monday. In the mean time her energy and spirits continue to pick up and get stronger with each day. She had a special visit with two of Daddy's friends from his job Auntie Jen and Auntie Melinda played the cupcake game with Ella.

In terms of discharge at this point it is still premature to get a sense for when exactly we will be able to come home, but everyone has been pleased with how mom and dad's training has progressed to this point. We get the feeling that our stay may not extend beyond a week. Continue to pray. We are all more than conquerors.