Its praying time!

I'm not quite sure how to start off this blog entry. We have come so far and made it through so much with our little conquer, our special little miracle, however we are facing some circumstances that we haven't had to face in more than a year. Ariella has been sick for nearly a week battling what we assumed has been a regular cold or some other kind of bacterial infection, however with Ella nothing is ever really "regular". After several days of increased treatments she has not gotten much better. She continues to be very congested and is desatting during her nap time and overnight while she's sleeping, which is to say the oxygen level in her blood continues to drop periodically throughout the night into dangerous levels. As a result of all of this Ella is currently being seen at Yale New Haven Hospital where they are going to admit her for a couple of days. I need to stress that she is NOT in critical condition. In fact if we pushed the doctors would let us take her home tonight with a regimen of antibiotics, but Rachel and I feel that it is in Ella's best interests to be seen by the professionals who actually specialize in Muscular Dystrophy. This will give them a better sense as to the nuances that are associated with her particular form of (MD). Again, however I want to be clear, she is not in critical condition. To look at her and spend time with her you would have a hard time believing that she is sick at all. She is still trying to walk all over the place and talk and get into everything imaginable. The fact is though, she should have gotten better by now and she hasn't. The doctors at Yale did do an x-ray and the x-ray is clear, praise Jesus, the doctors have listen to her lungs and her lungs sound clear, praise Jesus, all indications are that she is not in critical condition. This hospitalization is simply a precaution; do not give up on your faith, do not give up on our baby and do not give up on each other. Team Ella, we will make it through this as we have made it through every other challenge that we have faced to date by your prayers, thoughts and commitment to our family. It is all of you that has carried us to this point and we believe that God is still working on our behalf. This is just another opportunity to see his hand in our life. Please check this site regularly as we will continue to post updates as new information as it becomes available. We love you all thank you so much for all that you do.

P.S. Ariella wanted me to express her congratulations to her Nana for her retirement. Mom, Ella says she is sorry she could not be there in person to celebrate you at your banquet last week, but she heard there were a lot of people there sharing their love and gratitude and that cousin Ticha and her team did a great job with organizing the event. This made Ella very happy. Ella also said even though she missed you last week she looks forward to seeing you a lot over the summer as you transition into your new status of retired and FULL TIME NANA. Love you Nana MUAH!!!

Ariella is walking on her own

We decided not to tease you on this one, we are so excited to share the amazing new developments from Milagros that we are just going to give you the videos right away.

This amazing wonder, this incredible blessing from God, our Ella is walking on her own. As you can see she is still getting comfortable with the notion of holding herself up, but once she gets going there is no stopping her. She is a force. She seems to prefer walking on the wood floor, although over the last several days she has been walking more in the living room on the carpet. To say that we praise God, doesn't quite communicate the enthusiasm with which we bless God for everyday and not just because the baby is walking. We certainly praise God for that, but we praise God because we recognize that without His grace and mercy we would have not made it this far. We would not have had the strength to maintain and we know Ella certainly would not have survived. We thank God because the love from His Spirit fills us with perpetual joy.

And if that wasn't enough, here is Ella getting down on some BBQ on Easter Sunday -

There is no denying this girl is a BOTTS!

Viva Las Vegas

 Hey Team Ella,

We wanted to share some fun pics with the team from our Vegas vacation. Ariella and Charlie had the opportunity to meet some of their family on the left coast. We have had the good fortune of spending the week with Great Uncle John (pictured left), Great Aunt Dorthy, Cousin Eric and his children Anthony (pictured below with Charles) and Alyssa (pictured below with Ariella), Cousin Scott, his wife Yessenia and Scott's daughter Sierra (pictured below with Alyssa and Ariella). We also adopted Cousin Donovan, so he is stuck with us now!

Family is the cornerstone of community; it does not matter how far away we are or how long it has been, family just fits. That is what it was like during our trip, we just all fit together.

 

MILAGROS!

Our little warrior is at it again folks. First a quick update regarding her recent illnesses. As it turns out Ella was not receiving the adequate daytime respiratory support necessary in order for her body to recover. Earlier this week we had a brief appointment with her pulmonologist, who reiterated exactly the kind of care she should be receiving while on her sick plan, we have spent most of the week nursing our baby back to health and she has been coming along nicely. In fact she is feeling so much better that she has reached yet another mile stone this week.










 SHE WALKED ON HER OWN!!!!!

Did you see that! She took two steps from the couch to the toy chest without any help. Thank you Jesus! She is getting so big and she is doing so much. Keep the prayers coming team, as you can see they are absolutely working.

We also thought you would enjoy a very special pudding video. I don't think this is exactly what Mr. Bill Cosby had in mind, or maybe its exactly what he was thinking about, when he made those pudding commercials back in the day.

  

The best part of this video is her grunting while trying to get at this pudding. I think its we can safety say that her appetite is back. 

 

We love you team Ella.  

In Memorium

It has been a difficult week for team Ariella; our little angel was diagnosed with a minor ear infection earlier in the week. Her doctor prescribed some antibiotics and we thought that would settle things. In the past, within 24 hours of being on the antibiotic Ella would bounce back, however this week that was not the case. In fact we observed that her oxygen level and heart rate were both dropping below normal levels on a regular basis throughout the week. After several days of being woken up multiple times a night from the alarms on her heart monitor going off we scheduled a follow-up appointment with her pediatrician. This time the doctor concluded Ella must also be suffering some sort of viral infection on top of the bacterial one in her ear. To say that this little girl is a warrior is sometimes an understatement. Here she is fighting off a viral and bacterial infection, but to look at her you would never know that she is fighting off two different simultaneous infections. She is such an inspiration and an incredible blessing. 

In addition to the health challenges Ariella has been dealing with this weekend left us with some additional difficulty.  Saturday night, March 15th at approximately 9:30 PM Ariella's great-grandmother, Ann Marie Loving, passed away. Grandma had been fighting a variety of ailments for the last six years and at 89 years of age the Lord decided that grandma's fights were over and called her home. Additionally, Sunday we commemorated the 11th anniversary of the passing of Ariella's Tio Quito. Loss is never easy and I'm not sure that it gets a whole lot easier with time. However, I am certain that while Ella never got to meet her Tio and will not likely remember her great grandma these two individuals have still played an important role in Ella's life because of the impact they have had on our lives. 

In spite of the challenges with Ariella's health and the pain of the loss that we feel from the passing of loved ones we are all more than conquerors and Ariella is living proof that God's mercy does not run out. Just look and see for yourselves. 

This little girl doesn't know the meaning of the word quit or it can't be or that's too hard. All she knows is try, and try and try again. To be clear, this is the first time we have witnessed Ariella transition from laying to sitting!  All she has ever experienced is God's faithfulness. Team I know it is sometimes hard to accept that there is a benevolent, kind loving God that lives among us and only wants what's best for us when we see so much evil happen all the time. I don't know why bad things happen to good people. I can't explain why things happen the way they do, but every time I look at Ella, every time she has another first my faith grows a little more and I pray that as you read these posts so does yours. Her strength comes from generations of people that have overcome various circumstances and challenges throughout their lives. She is God's reminder to us all that there is nothing too hard for Him. And if that was not enough encouragement here is a little more, Rachel's employer and insurance company have agreed to extend Ariella's home-care nursing benefit for one more year. We have one more year to keep Ella home under the care of our nursing team to help her stay healthy and get strong. All praise and glory belongs to Jesus Christ.

Today, in spite of the pain you may be feeling or the trouble you may be experiencing put your trust in Jesus. We dedicate today's blog to Felix Oscar Rivera and Ann Marie Loving. May we all find comfort and peace that only Jesus Christ can bring. 

An update on the conqueror

Grace and peace Team Ella,

The winter in the northeast has been unforgivingly cold and almost ceaseless, but our little warrior continues to push through adversity with her typical fearlessness. By way of a quick update we have not heard a definitive word from our insurance company. We believe that the extension will be granted for one more year, however, we do not have anything in writing as of yet. Keep praying, we believe God.

On another note, we have been experiencing some great fun with our very special Ella. We wanted to share with all of you some of her most recent exploits. In the video below, watch closely you may see her do something remarkable.

Did you see her stand up by herself. What an amazing wonder our little milagros is.

Your help in 2014

As our special angel continues to grow and progress many of you have asked, is there is anything more you can do to help , or if there is going to be another event. To be honest we have been hesitant in asking for any additional assistance because we have been so richly blessed by your generosity that we have not had a great need, until now. As you may recall Rachel's insurance made an exception when they allowed Ariella to receive at home nursing care in order for us to be safely discharged from the hospital almost a year ago. The provision that Anthem Blue Cross Blue Shield made was that we would be eligible for 16 hours of nursing care a day, for one year. We have been blessed with an amazing team of nurses who are lead by Jennifer, whom many of you have met, that provides Ella's care and support during the week so both Rachel and I can continue to work. Having said that we are coming up on one year since Ariella's discharge from the hospital and what an amazing year it has been, full of miracles and milestones and while Ariella is certainly much further along than anyone could have predicted, she is not at the place where she can function without the nursing care that she currently receives. We need your prayers as Ella's medical team puts together the case to extend her nursing care support for another year. This is critical folks, without this exception we are left with two basic options.

1. One of us quits work in order to stay home with the baby and provide her necessary medical care, which we cannot afford.
2. Enroll her in a traditional daycare where she won't receive any of the medical support she requires and pray she doesn't ever get sick or experience any medical emergencies. 

As you can see neither of those options are very good. While we feel confident that there are good sounds medical reasons to extend the benefit one more year, we need your prayers that God would touch the hearts and minds of those that will review our case that they come to the same conclusion.

Additionally we also have a more immediate need. As you can see Ella is becoming much more mobile, due in no small part to your constant prayers and encouragement. Additionally, we have been able to introduce a number of mobility tools, including different kinds of pediatric transportation toys, to encourage Ella's free movement and lower body strength, however we are starting to experience a spacing issue. The floors on our first floor are not completely finished and there is carpeting in our living room which limits her mobility. Additionally, the floor boards on both levels of our home are very loose, which can make it difficult for Ella to get a full night sleep without being disturbed by even the smallest noise of someone walking around. What we need is a flooring expert who can finish the floors on the first floor so that Ella has a nice even surface to move around on and fix the floor boards on the first and second floor so Ella can sleep in peace. This would go very far in ensuring our home environment is accessible for our angel as she continues to grow.

If folks know of any flooring professionals, particularly in our area, that would be willing to work with us and help us improve our living space to accommodate our daughter's needs that would be great. You can have them contact us directly at  860-670-6998. Thanks Team for all that you do, we would not have made it this far without your prayers, generosity, compassion and love.