Thursday January 31, 2013

So Ariella has had a lot of extra secretions the last couple of days. It took her a while to fall asleep last night, but did finally get some rest at 11:00 pm. Today she got a good nap in during the day from 2-5 pm, however the extra sleep kept her up late again tonight. She didnt fall asleep until after 10 pm. But she is asleep. She also received a special new friend from the seventh floor social worker. Thanks again Brian.



Your efforts are making a difference

Hey Family,

So I want you to know your efforts are paying off. To date we had been contacted by all of the elected officials we listed, except for one. We want to thank Senator Blumenthal's office for being the first one to reach out followed by Senator LeBeau and than Rep Tim Larson and Congressman John Larson. We are so grateful for all of you that have emailed and written our elected officials. Perhaps in time we will hear from all of them. In the mean time keep praying for us. For those of you that continue to ask how you can help we will be putting up some information on donations and other ways you can help us. We love you all so much, you all make us stronger.

Tuesday January 29, 2013

Our angel continues to do well. Ariella had a good day, but started to experience some real challenges during the evening into her overnight ventilation treatment. Around 5 o'clock this evening she started to get kind of junky from her mucus and secretions. The later it got the more agitated the baby became and as a result her mucus and secretions got worse. By time her respiratory treatment came along at 8 she was full of a lot of mucus in her throat and lungs. Fortunately for us one of Ella's favorite respiratory therapists, Geronimo, was available to administer her treatment. He is very thorough and attentive with Ariella. He was able to remove quite a lot of the mucus from her lungs and once he placed her on the breathing mask she immediately went to sleep. We bless God and are grateful for Geronimo for helping our baby to fall asleep peacefully.

Sunday January 27, 2013

Hey Family, our little warrior princess continues to progress nicely. While she had trouble sleeping Friday night, Saturday night she slept well, without any issues. Her time off the ventilator continues to go well and we thank God for her progress. Having said that family I have to share something with you.


Rachel and I were having a conversation with a member of the hospital staff. This particular individual started to discuss discharge options with us. Now keep in mind we have had this conversation with multiple members of staff on several different occasions. This conversation, however, was not bothersome because we had already explored almost every option available to us, or so we thought. This individual revealed to us there was one more option, one possible solution to ensuring our daughter gets the care she requires; make her a ward of the state. Yeah you read that right, relinquish custody of our only daughter to the state of Connecticut, than as a foster child she would qualify for all treatment she would ever need. The individual even went on to say 'I'm sure that state would work with you to set up some kind of visitation schedule'. Are you serious, a visitation schedule for my own flesh and blood. Can you believe this fam, this backwards, nonsensical, asinine system actually suggests that a two parent, husband and wife household, both of whom are employed, both of who are educated, both of whom are pay taxes, both of whom are productive members of the society, should give up their child so the state of Connecticut can raise her. How do you like that for an effective system. The government is not willing to take our hard earned money that we would happily give it, in order to buy into the state insurance plan, but is perfectly ok with taking our child. So our money is no good, but our baby, yeah the state will take her. My fellow Americans, this is our system. This is something that is considered an actual option.

Folks this is not a wolf dressing up like one of the sheep and trying to slip in the backdoor when no one is looking, no this is the wolf knocking on the farmer's front door and asking him to unlock the gate so he can just walk right in. It is a sad day when our government tells two hard working parents who have been blessed with a child that has needs a little more expensive than they can currently afford on their own that their best option is to give their child over to the state and try again, because the state is in a better position to give her what she needs.

Let me be clear right here and right now.
NO, YOU CANNOT HAVE OUR BABY! It is not an option, I want the darkness to hear me clearly you will not over take this household, you will not claim this family, you will not win. Ariella Christina Botts is our daughter, she is our treasure, she is our blessing and you can't have her; not today, not tomorrow, not ever. She is God's gift to us and we will raise her according to God's Holy Word. This is our promise to our Savior and King, Christ Jesus. Ariella will come back home, In Jesus Name!

Don't Forget to Laugh


Ella wanted to remind you all how important it is to laugh; she and daddy were playing back in October.

Detailed information on how you can help.

Hi Family,

First off we want to say thank you for your continued support and prayers, they have become our life line. A couple of days ago we posted a comment asking for your help in contacting our local legislators to make them aware of our situation and solicit their support. We want to provide you all with some more detailed information on exactly how you can assist us. Below you will find contact information for our state and federal legislators. We have also provided some language you can feel free to use in your communication. You can simply copy and paste what we have provided below into your individual coorespondence or you can use this language as a guide to communicate our message in your own voice.

Connecticut State Representative Tim Larson
Legislative Office Building, Room 2403
Hartford, CT 06106-1591
(860) 240-8585
1-800-842-8267
Timothy.Larson@cga.ct.gov
https://www.facebook.com/CTHouseDemocrats  

Connecticut State Senator Gary LeBeau Capitol Office
State Capitol, Room 110
Hartford, CT 06106-1591
e-mail - http://www.senatedems.ct.gov/Cap/php-bin/form.mail/LeBeau-mailform.php
https://www.facebook.com/gary.lebeau.9
Legislative Aide to Senator LeBeau
Alex Peterson
860-240-0511, or
Toll-free: 1-800-842-1420

US Senator Richard Blumenthal
http://twitter.com/SenBlumenthal
https://www.facebook.com/SenBlumenthal
e-mail - https://www.blumenthal.senate.gov/contact/#
Office Locations-
Hartford
90 State House Square, 10th Floor
Hartford, CT, 06103
tel (860) 258-6940
fax (860) 258-6958

Washington D.C.
702 Hart Senate Office Bldg.
Washington, DC, 20510
tel (202) 224-2823
fax (202) 224-9673

US Senator Chris Murphy
http://twitter.com/ChrisMurphyCT
e-mail - http://www.murphy.senate.gov/contact.cfm
Office Locations-
Hartford
One Constitution Plaza, 7th Floor
Hartford, CT 06103
Phone: (860) 549-8463
Fax: (860) 524-5091

Washington D.C.
B40A Dirksen Senate Office Building
Washington, DC 20510
Phone: 202-224-4041
Fax: (202) 228-9604


US Congressman John Larson
http://twitter.com/repJohnLarson
https://www.facebook.com/RepJohnLarson
e-mail - https://forms.house.gov/larson/contact_new.html
Office Locations -
Hartford
221 Main Street, 2nd Floor
Hartford, CT 06106
Ph: (860) 278-8888
Fx: (860) 278-2111

Washington D.C.
106 Cannon House Office Building
Washington, DC 20515
(202) 225-2265
Fx: (202) 225-1031

"Hello My name is (insert your name here) and I am contacting you on behalf of Charles and Rachel Botts, residents of East Hartford CT. Charles and Rachel are the pround parents of Charles, IV (10 years old) and Ariella Christina (6 months old). I am contacting you specifically in regards to Ariella. Ariella has been recently diagnosed with a rare neuro-muscular disease, Nemaline Myopathy. If you were to research this particular disease you will find that there are both non-progressive types, which typically presents later in life as adults and progressive (often fatal) types, which presents very early in infancy. Precious little Ariella was born with this disease. She has been in and out of the hospital all of her life. Most recently she has been hospitalized for nearly a month. There was a time when Charles and Rachel thought they were going to loose their precious angel, but miraculously she has battled back by the grace of God and she continues to get better everyday. She is currently receiveing care at Connecticut Children's Medical Center. And while she has been well cared for, the time has come for her to go home, but Charles and Rachel are unable to do so becuase they cannot afford the requisite shift nursing their beautiful baby requires during the day while they are at work. They also do not qualify for any state aide. You see they are part of the faceless middle class. They are good people, they are active in the East Hartford community, members of a local church, they pay their taxes and even volunteer. But all that is for not becuase the don't make enough money to afford the shift nursing on their own and make too much to receive any help from the government and so their daughter continues to lay in the hospital at an increased risk of infection while she receives her care. We need your assitance in helping these good people indentify the resources they need to help their daughter. As it stands right now the best option for these folks is to leave their jobs, have their home foreclosed on and add themselves to the state welfare burden in order to get the help they desperately need. Please have someone from your office contact them. You can reach them at charlesbotts@gmail.com, they also maintain a blog dedicated to their daughter where you can read all about her story and meet this amazing little warrior, http://iammtc.blogspot.com/. Thank you for your time and attention."

Happy One Half Year Birthday

We want to send a bday shout-out to our sweet lil Ella. Yesterday our dear baby turned six months old. It's so amazing to see how she's grown and how she's gotten stronger and healthier over these last several days. Two weeks ago we weren't certain she should make it this far and here she is six months old, defying the odds and living a miraculous life. Your prayers are still needed, but be encouraged and know God is listening and moving and Ella is not only surviving she's thriving. Continue to keep her lifted up.

WE NEED YOUR HELP!

Everyone is asking what they can do to help....I have a real practical way you can help and it won't cost more than paper, ink and a few stamps. Write a letter to Senator Gary Lebeau and Representative Tim Larson. Tell them how grossly unfair it is that a family who has decent jobs, owns a home and lives a decent middle class life can't find a stitch of help to care for a disabled child. Tell them that the current system incentivizes poverty. The fact is I could let my homes foreclose, leave our jobs and get more help than if I stay a "productive member" of society. How about them apples? I'm not even kidding, please write the letter and send it ASAP. I want my phone to ring because they got so many letters they need to shut me up.

Thank you CWP

I also need to say a special thank you to an amazing group of people. My company, KRA whom I mentioned in a post a couple of days ago, was hired by the workforce invesment board responsible for workforce development service in north central Connecticut, Capital Workforce Partners (www.capitalworkforce.org). I would not wish this experience on anyone, not anyone, anywhere, ever. To watch your child go through what my wife and I have is indescribable and yet God continues to send friends and family our way that manage to buoy us right before we slip further into the deep. Capital Workforce Partners (CWP) is one of those life preservers. We are so humbled, so honored and so incredibly grateful for your over whelming generousity and kindness. We will remember your gesture of support and aide indefinitely. Thank you - Liz, Rose, Martha, Shelly, Alissa, Sandy, Julie, Shelly, Pamela, Mariam, Valere, Jim, Michael, Summer, Vanessa, Steve, Tony, Debbie, Dennis and Tom. God bless you all.






Wednesday January 23, 2013

Ariella's progress continues folks. Her four hour intervals off the breathing machine are going well. She gets stronger everyday and is even beginning to make noise like she is talking and singing again. As further evidence of Ella's progress in the right direction I captured our sweet baby playing with her favorite teddy while sleeping. You know it says a lot about a kid's temperment when they can play in their sleep. We love this little girl, she's the absolute best.

Bye bye PICU

Today Ariella the warrior graduated from intensive care and has moved up to the floors. I would be lying if I said this wasn't bitter sweet. In every way from a health stand point this is a good thing. Leaving the PICU means that Ella is currently not in critical condition. It means she will be around other children who are less sick than those in intensive care. And it means we are perhaps a bit closer to coming home. We are not getting ahead of ourselves, a lot has to fall in place in order for that to happen. Additionally, in light of Ariella's condition we have to be hyper vigilant about keeping her quarantined. Family believe me when I say this and I am not exaggerating, a small cold even a sniffle, means that Ella could land back in the PICU. Not to mention even the slightest infection carries with it the risk of aspiration and pneumonia. And pneumonia for a child with Ariella's challenges could mean respiratory failure and even death. We don't share this with you because we don't have faith or that we are being dramatic. We share this because we need you all to understand that a cold could kill our baby. So while we want to go home we are not leaving before we are ready and when we are home we are going to be on lock down until we get through this infection season. We need your support and understanding.

We are sad to say bye to the great medical care professionals in the PICU, many of whom have become like friends. We will miss the PICU. However we look forward to meeting more friends and continuing Ariella's great progress on the 7th floor. This is our first introduction to this team. But if they are half as amazing as the 6th floor or the PICU than we will be in good hands.



Monday January 21, 2013

Today our baby celebrated Dr Martin Luther King's birthday by trying out a new breathing mask. This one should help to keep the air out of her eyes and hopefully feel more comfortable for Ella over time. She also spent today off of the ventilator for two four hour intervals again. And once again she did very well during these trials. The more time she is able to maintain her vital sings off of the machine the better. Keep praying fam it's working.

Sunday January 20, 2013

 
What a great day! Once again Ella has been off the ventilator twice today, for four hours intervals. Her eyes are so full of life and hope and faith and love and promise and wonder. Look into her eyes. Do you see the possibilities. Do you see the purpose. Whether you see that or not what you don't see is despair, or hopelessness or death. Someone forgot to tell Ella she is supposed to be decreasing and not increasing. Someone forgot to tell our little warrior she is fighting a loosing battle. Someone forgot to tell Ariella that she has an incurable muscle disease that is supposed to cause her organs to fail. Instead Ariella is acting like she knows her name means 'lion of God'. She is living like someone who believes God is able. She is living like someone who knows prayer works. Look into her eyes, what do you see. Do you see yourself stronger, do you see yourself full of more faith and more hope. Do you see God in her eyes, becuase that's what I see everytime I look into those eyes. I see God's strength.

"...for now I am honored in the eyes of the Lord, and my God has become my strength." Isaiah 49:5

The KRA Team

Our Pastor, Elder Lamar Belcher, Pastor at the Anointed Tabernacle of Jesus Christ, often reminds us to give honor to whom honor is due. He will often times say, "I have to say thank you." That's exactly how our family feels. There is just no way we can not say thank you. It's interesting in times of crisis you can really measure a person's strength of character. Either they will rise to the occasion or the overwhelming dark will consume them. During this most challenging time for our family my employer and my colleagues have far exceeded any expectation I could have possibly conjured. KRA Corporation, www.kra.com, has been nothing short of amazing. The innovation and compassion, I know I use that word a lot, but it fits, and humanity and generosity and love that has been shown to our family, I'm at a loss. The KRA corporate team based out of Maryland and the local team here in Greater Hartford has been and continues to be such a blessing. Thank you to our head of HR Ms Patricia Pinckney and our CEO Mr Knowlton Atterbeary for your leadership, vision and support. Thank you Kiesha, Kim, Chastity and Nicole for you comments on the blog. They are encouraging. Thank you to Meli and the New Britain office, much love. To the office that was second home for a while, stand up Enfield office, thank you guys so much. Keep them smiling out there Wendy. To the office where my career with KRA began, Hartford, I can't hear you, ya'll better get up and make some noise. I have always felt love in the Hartbeat. To shout-out everyone there would be too difficult. You all know I have love for you all (Mrs Fields I'm looking at you), in particular though I have to give much respect to my manager Mr Artie Owens, @artieowens. Thank you boss for listening, for understanding and for looking out. And certainly to Ms. Kim Staley. Kim you are more than a director, you are more than an executive, you are more than a leader. You are a friend and you have supported me and my family in more ways than I can say thank you. I am humbled and so very grateful. Almost three years ago you took a chance on a young corporate cast-off who had no workforce development experience and brought me in as a manager. I am grateful for what you saw in me then and for the constant encouragement and support. And finally, I know you thought I forgot, to the best office and an incredible group of folks I have the blessing of working with everyday. To our Unit Supervisor, Mari and the Manchester team; DQ, Bernie, Bev the blond bomb, Big Jeff, Judes (who we have adopted) and D. I appreciate you all so much. Thank you for listening to my daily updates on my daughter. Thank you for getting my back. Thank you praying and caring and everything you do to make my time at the office full of laughter and love. It's hard to be away from my Ella, but you guys make it bearable. Thank you KRA. God bless each and everyone of you and your families.

Saturday January 19, 2013

Well Ariella had another great day today lots of smiling, lots of playing and lots of looking around with those big beautiful brown eyes. The new change in her care today, and further evidence of her progress, was that she got to come off of her breathing machine twice today, for four hours at a time. This is a big deal folks; our beautiful little warrior had a collapsed lung five days ago. Today, in spite of her muscle weakness, she is breathing all on her own for nearly half the day. There is no God like our God, no one, not anywhere.



Connecticut Children's Medical Center

This post is long overdue, mostly because I'm just not sure how to put into words the eternal gratitude my family and I have for the staff at CCMC. How do you say thank you to the people who have committed themselves to the preservation of your daughter's life. How can you possibly articulate the overwhelming compassion, care and commitment that you feel from a group of strangers who's only connection to you is that they have committed themselves to making babies better and your baby is among their sheep fold. I wish I had the resources to bring all these folks together for some sort of recognition dinner. I wish I was in a position where I could introduce each and everyone of them to all of you who have taken the time to read up on my daughter's progress and pray for her. I wish I was the producer of some awards show where I could honor these folks and give them their day in the spotlight. Since the only mechanism that I have at my disposal at this point is this modest blog post I will take the time to say thank you and hope that these angels that live among us appreciate how grateful our family is for their professionalism and compassion. We have to thank the hospital administrators, security folks and catering for all of their support and assistance throughout this journey and in particular helping to make Ariella's christening a possibility and huge success. We want to thank the hospital's social workers, especially Priscilla and Jenny, who not only helped to facilitate the Christening, but continue to be a great resource for our family. We have to thank the occupational therapist that are working with our daughter to make sure she continues to get stronger and use her muscles in the hopes that she can do the unthinkable. We have to thank the respiratory therapist that worked so hard to clear up our baby's lungs and rid her of her secretions helping her get back to a place where she can breathe on her own once again. We certainly have to thank the doctors that care and serve as God's hands in healing our baby. I don't know how to best describe how wise and skilled and intelligent and insightful these folks are. Thanks to Dr's Achadi and Ionita from neurology, to Dr Lapin from pulmonary, to Dr Valdez from ear nose and throat, to Dr Rue from cardiology and certainly to the team of attending doctors in the PICU; Dr's Fisher, Comeau, Silverman, Banasiack and Zucker, the head of the PICU. You all have given our daughter another chance at life thank you all so much. There is one additional doctor I have to mention in particular. Dr Wael Sayej is a Gastro-internologist or GI doctor at CCMC, he was one of the first doctors to see our warrior princess and has cared for her every step of the way. Dr Sayej was there when left the hospital for the first time with an NG tube in Ella's nose so she could feed and get the nutrition that she needed. He performed both of her surgeries to insert the G-tube into her belly and than to switch the G-tube to the Mic-key button. Dr Sayej was even there the day after we got her diagnosis to hug us and cry with us. That's right this brilliant medical professional was human enough and loves our daughter enough to be vulnerable and show his emotions. To this day he continues to check on her, even though she is not technically his patient he and his cologne, which you can smell coming down the hall, hahahaha, still visits with our baby. And folks Ella is smitten with Dr Sayej. She smiles with him and reaches for his hand. She is definately one of his biggest fans. As you pray for the team here at CCMC please say a special prayer for Dr Wael Sayej and his family.

Rachel and I understand that there may be other facilities in the northeast or other parts of the country with more resources and perhaps access to more research and data on her particular condition. Believe me we are looking into some of that, but I am certain we will not find a group of nurses that are more skilled and more caring and do more for our daughter then the folks that we have had the tremendous pleasure of meeting, working with and living with for the better part of Ariella's life to this point. Our first introduction to these amazing people was the nursing staff and pca's on the six floor where Ella spent her previous hospital admissions. Lauren, Rachel, Nicole, Karen, Eddie, Cliff, Chayra, Diana and others thank you all so much from the very bottom of our hearts with all that we can muster. We will forever be grateful for the sacrifice and compassion that you have shown our family during this very very challenging phase. You breathe life and hope into us and into our little Ella. We will be saying thank you to you folks for a very very long time.

Now the sixth floor nurses are not to be outdone by the nurses and rt's in the PICU. To auntie Jenna, Ashley, Lynn, Agnes, Crystal, Seegee, Justin, Ken, Shirley, Geronimo and the rest of this amazing team God bless you all. A week ago my wife and I received about as bad news as any parents could and these angels, these saints, these heroes saw us through some very dark days to the point where our daughter is actually rebounding and living a miracle life.

In a time where Athletes are liars and cheaters, entertainers are selfish and full of pride, even our public servants seem to fail us; if you are looking for heroes, if you are looking for the kind of people that can be true role models you don't have to look much further than the frontline staff at Connecticut Children's Medical Center. To the nurses, personal care associates, respiratory therapist, occupational therapist, hospital administrators and doctors; on behalf of the Botts family and all of our family and friends we say thank you all so much. God bless you and your families.

Friday January 18, 2013


This is the third day in a row that our precious little warrior, Ariella, has had a good x-ray. The momentum continues. Today featured long stretches with our baby off her breathing machine. She got to sit in her favorite bouncy seat, she was hanging out with her Grandma-buela, interacting with the staff and she was even smiling and laughing. The little rascal even started to try and pull her IV out... again. She pulled it out once before, I guess she figured we wouldn't catch on to her antics. Additionally Ella has been on a different kind of breathing machine. This one is smaller and more mobile than the first bipap machine. We are still waiting for a smaller face mask that will fit over her nose and mouth only as opposed to the fire fighter mask that covers her entire face. Ariella still has a long road ahead of her and at that same time we praise Jesus everyday for each of her victories.

Oh yeah and daddy gets some quality alone time with his preciosa tonight. Can't wait.

Happy Birthday

Just a quick post to say happy birthday to two very important people in Ariella's life. We woke up this morning very happy to give both titi Miranda and Madrina Jessica this great birthday gift.....two consecutive days of improvement! Happy birthday Madrina and titi! We also want to say happy belated birthday to our Pastor Lamar Belcher, who's bday was yesterday. To celebrate check out today's x-ray, even better than yesterday's



Wednesday January 16, 2013

This will not be a very long post. Much of what I would write tonight I shared in the previous entry "This is what a conqueror looks like". I will say though tonight the baby became very uncomfortable with her mask. However, her momma worked with the nurses and respiratory therapists to ensure that the mask fit well and that Ella was in a good position. Rachel is no joke. We pray she has a good night's sleep and that tomorrow's x-ray looks as good as today's...if not better.

In the mean time momma and I got to love on our baby without her mask for a bit today. Look at how beautiful she is, even through all this.









This is what a conqueror looks like

Sometimes a picture really is worth 1000 words. Below is a picture of two x-rays of Ariella's lungs. The one on the right is the x-ray from yesterday morning. To look at it you would think that there is something wrong because you can only see one lung. The left lung, which for the most part has been functioning properly, under the x-ray is nice and dark, that is a good thing. It means air is moving through the lung and it is clear. However, the lung on the right is whited out and barely visible. That is a bad thing. Yesterday the air sacs in the right lung were blocked up and almost completely filled with mucus. That was yesterday's x-ray. Today's x-ray is the one on the left and what do you see, that's right you see BOTH LUNGS BEAUTIFUL AND BLACK. In less than 24 hours God worked through the Bipap machine and inflated Ella's right lung almost to full capacity. So far today she continues to do really well. I will write more later, but I had to get this out to all of you immediately. Please don't stop praying, don't stop calling on Jesus for a miracle. It is working.

Tuesday January 15, 2013

The momentum continues, Ariella had another really good night, good sleep with not too many disturbances. However, once again her x-ray this morning was not very good, she continues to be very blocked up in her right lung to the point of collapse. As we considered the options before us we decided on the least invasive method and moved forward with the bi-pap. As you may recall from previous entries, bi-pap is a type of respiratory treatment that forces air into her lungs along with some added pressure when she exhales. This treatment is a lot like the cepap that she has been on all week. Some of the differences are that the bi-pap allows us to increase and decrease the amount of pressure the baby is receiving much more quickly and precisely. We can also help the baby breath if she starts to go into respiratory distress. The bi-pap is also portable, which gives us lots of other options. While it is too early to tell whether or not this technique will help to pop open Ella's lung and push out the secretions, early indications are that she is tolerating the treatment quite well.

The diagnosis

As you may recall from an earlier post, two Fridays ago Ariella had surgery to switch out her temporary feeding tube for a Mic-Key button and at the same time we also had a muscle biopsy done in the hopes that we might learn what the underlying cause to all our sweetie's symptoms might be. Well last week we got an answer, according to our neurologist Ariella has a condition called Nemaline Rod Myopathy. This is an extremely rare genetic condition that effects about 1 in every 50,000 births. This disease interferes with how the proteins in the muscles are formed. In a healthy body the proteins that make up the muscle tissue interlock and weave into a strong pattern that allows the muscles to expand and contract such that they can regulate things like breathing and heart beat. In a Nemaline body the proteins don't interlock and weave the way that they are supposed to instead they form tiny individual strains of sorts that look like little sticks that never touch, very much like the fingers on your hand. If you don't deliberately cross them your fingers would never touch. Well the problem with this is that because Ella's proteins don't interweave her muscle won't expand and contract in order to help regulate some of these key functions.

Moreover, there are progressive and none progressive forms of this particular myopathy. The non-progressive usually presents in adults and older youths; it can oftentimes be managed and supported through therapy and other treatments. However, in young children and infants the disease is often progressive and the younger the child the more progressive. And in rare occasions like Ariella's when the child is born with it, the disease is fatal. The doctors cannot give us a timeline because it is different for every child it could be a matter of days or a matter of months the only thing they can say with any certainty is that whether it is through respiratory distress or heart failure our angel will die.

This is the report that we have received from the doctors, however I must share with you another report. The report of The Lord Jesus, in His Holy Word He says in Jeremiah 29:11, "For I know the plans I have for you, declares the LORD, plans for welfare and not for evil, to give you a future and a hope." The Lord also says in Psalm 119:17 "I shall not die, but I shall live, and recount the deeds of the LORD." I am reminded of a gospel classic by Ron Kenoly, "Whose Report Shall You Believe", the chorus of the song says - "His report says I am healed, His report says I am filled, His report says I am free, His report says victory."

Ultimately I believe that with God nothing is impossible and furthermore that the only way our daughter can be cured of an incurable genetic disease is for God to work a miracle. And so while we wait on God to do what only He can we also prepare ourselves for what very well maybe the inevitable. We enjoy everyday that God gives us with our daughter and we make the most of each moment.

Whether God saves our daughter or chooses to bring her back home to Him in heaven, either way WE love and trust God. Rachel and I dedicated Ella's life to The Lord and we believe His thoughts and plans for her life are good and perfect. We are more than conquerors today because we have learned that whether Ella lives on Earth or lives forever in Heaven, God is still God and He is always good. As for me and my house we will believe the report of the Lord.



Monday January 14, 2013

Ariella's momentum continues, she slept quite a bit last night, good peaceful rest. She woke up this morning a little agitated, but calmed down after her morning respiratory treatment. During this morning's consultation with the medical team it was decided that we would give the intermittent positive pressure breathing (IPPB) treatments another shot. This kinda of treatment is different than the cipep that she gets through that breathing tube at all times. The IPPB forces more air pressure into her lungs over a shorter period of time with the hopes of popping open the air sacs in her lungs. We decided this was worth trying again because even though Ella's disposition today has been great, her x-ray was not. Her right lung looks very cloudy, which means it is blocked-up. The IPPB gives her a good chance of opening up her lungs without sending her in further distress the way the bipap potentially could. While it is too early to tell how effective the IPPB is, look at the kind of day my baby is having.

The IPPB treatments will continue throughout the rest of the day and we will evaluate how she is progressing in the morning. Keep praying, it works.

Sunday January 13, 2013

According to our team here at CCMC, the best hospital in the state, our princess had a very good night last night. She slept well and maintained good vitals. She followed up her good night with having a good day. We have decided not to proceed with switching over to the bipep machine at this point because she is maintaing good levels using the cipep only. Her lungs still have fluid in them and she is still not able to clear her secretions. But there is a risk that the bipep could send her into further distress aside from some of the possible benefits. As long as she is hanging in there we are going to let her work through it. As an added benefit to the day Ella and mommy even got in some precious snuggle time. What a beautiful pair. I am by far the most blessed man in the world.



The Dedication of Ariella Christina Botts

According to Holy Scripture in the first book of Samuel chapter one, a woman named Hannah, who was unable to bare children prayed to the Lord and made a vow that if the Lord would bless her with a child she would commit the child's life to the Lord and raise him according to God's law. After a period of time the Lord did bless Hannah with a child, a boy, whom she named Samuel. When Samuel was of age, Hannah kept her promise and brought Samuel to the temple and presented him to the High Priest Eli. Samuel would now live out his days in the temple being raised to keep God's holy law and serve the Lord and the Lord's people. As Hannah did all those years ago we too fulfilled our vow to the Lord and yesterday before a host witnesses from our friends and family we committed our beautiful daughter's life to the Lord. We promised to raise our daughter according to God's Holy Word and to live a Godly life before her, one that honored our Lord and Savior Jesus Christ and that brings glory to His Name. We also charged our friends and family to hold us accountable; not to let us stray even in our darkest times. We also charged her Godparents; Troy Jackson Botts, Jessica Rodriguez Espejo, James and Earlene Daggs to ensure that Ariella is raised according to God's holy ordinance and that they stand in place if anything were to ever happen to Rachel or I.

We are so grateful for the love and support our friends and family have shown us and for your commitment to help us raise our daughter according to God's Word and His perfect will.

Mouth Treatment is sooooo Good


Ella getting her mouth cleaned. That's right my baby actually likes brushing her teeth, she is such a proper little lady.

Saturday January 12, 2013

The baby had a good night last night into this morning, however this morning she had an elevated heart rate and her blood saturation, the amount of oxygen in her blood, was lower than normal. As a result of the discomfort she started to have some anxiety. The doctors administered some medication to help her reduce her anxiety and I got a chance to pray over her. Throughout the day she managed to rest a bit and this evening she has been bright eyed and even gave me a couple of smiles to let me know that she was doing much better. I got a chance to bathe her along with her nurse and she fell asleep about 30 minutes ago. She is resting very comfortably in her new clothes with her new bow. She also received a visit from her BFF Faith.



New outfit

Ariella slept most of the day, but tonight mom and the nursing team were able to dress my lil momma up a bit. She's so precious.



Friday January 11, 2013

Ella had a tough night and the nurses did quite a bit of aggressive suctioning this morning. She is resting peaceably now and we are hopeful today that we will receive a new device that will help with her respiratory treatments it's called a Bipap. This device will continue to force air into her lungs so that the mucus breaks up and the bronchioles in her lungs can fill with air.

Thursday January 10, 2013

Ariella had a rough night last night the medication that the doctors have been giving her has been drying her up but she's so dry that she has very thick mucus this morning that is chocking her. The nursing staff is doing a great job of suctioning her to keep her clear and make her as comfortable as possible. She was getting her breast milk overnight but they have stopped feeding her milk and will increase her IV fluids to help balance out the amount of fluid she has flowing through her body and lungs, this will help her heart rate and hopefully loosen up mucus.

PICU (pediatric intensive care unit)

Peace and Blessings Friends and Family,

Rachel and I wanted to share the latest happenings concerning our dear Ella. I am sorry that we are not able to respond to every phone call and text message, we hope this way helps everyone feel included. We are so grateful for your interest, support and most of all prayers to God for our special little lady.

To bring you up to speed, Ella was born with very low muscle tone and as a result was never able to successfully feed through her mouth. Her body also develops more mucous and secretions than she is able to manage through swallowing. Over the last several months she has made some improvements in her development, she holds her heads up a bit, she can push herself up from a sqaut and she can even grab toys and move them back and forth between her left and right hands.

Ella is so strong and so determined. Through all of her developmental improvements we have contiued to search for answers. Last Friday Ella had a scheduled surgery where she was going to receive a Mic-key button,(an easier to manage feeding tube) we also scheduled her to receive a muscle biopsy that would hopefully gives us some answers. The surgery went well and she seemed to recover after a couple of hours of observation. I will say more about the amazing care she has received from the staff at Connecticut Children's Medical Center in a later posting - let me just say these folks are amazing blessings in their own right. We brought our baby back home Friday evening, however she did not sleep very well Friday night and never really settled down Saturday during the day. After several attempts to help our baby manage her new increase in mucous and secretions we took her to the CCMC emergency room.

The emergency department triaged Ella very quickly and had us placed in trama room 1 where we received treatment right away, it was there that Ella was diagnosed as being in respitory distress. They started her on oxygen right away and shortly thereafter started a respitory treatment called CPEP, which is meant to force air and pressure into her lungs, thereby inflating them which would hopefully clear up the mucous secretions that currently blocking the air sacks in her lungs.

From the emergency department we were admitted to the pediatric intensive care unit, or PICU where Ella has remained since Saturday. She continues to receive respitory treatments as well as medication to dry up the extra mucous, she is also suctioned almost hourly. Suctioning is when a respitory therapist uses a small vacuum tube to forceably remove mucuous from her lungs and throat by inserting a small tube down her nose and throat, mom and I have our own suction machine and have done this on Ella many times in the past.

Her x-rays this morning showed that the upper portion of her right lung and lower portion of her left lung still have clogged air sacks. They are trying a new medication to loosing the mucous as well as increasing the frequency of her respitory treatments, which include PT or physical therapy. This is when the respitory therapist using a small recussion cup taps the baby's chest to loosen the mucous. It sounds worse than it acutally is, she loves it.

Continue to check the blog often for new information and stories of encouragement and inspiration. Through Christ Jesus Ariella is more than a conqueror and so are you.