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.

One Year Ago Today

One year ago today I heard the words that no parent wants to hear, the words that no parent should have to hear.  The doctors told me that my precious first born baby girl had what appeared to be the most severe form of Nemaline Myopathy possible.  As my angel struggled to breathe under the weight of her ever collapsing lungs, as the alarms sounded every time she lost oxygen saturation, as I watched the ventilator tear the tender skin under her tiny nose until every movement made her cry out in pain, I wept.  I wept as they told me that she would likely never reach one year old, I wept as they said even more clearly that she would probably never even leave that hospital, that we should Christen her as soon as possible to ensure she was blessed before she died. 

I wept at the thought of telling my mother that after losing her grandson and her son; that she would also lose her granddaughter; that I had failed at my first job as a mother…birthing a healthy baby.  I wept as I held my husband on the floor as he screamed out to our God begging him to save our baby; I wept holding my stepson on my lap telling him that the sibling he waited 9 years for was going to leave him. I wept at telling my husband’s ex-wife that now more than ever, we needed to work together for her son’s sake and I wept as she hugged me in total sympathy…the type of sympathy that only another mother can offer.

I wept as I weaned my breasts from providing the lifesaving nutrients they offered to my baby because I could not bear the thought of pumping to wean after her death. I wept every night in prayer as my stepson held God to his word; he said “God your Bible says you are a healer and that your children should ask and they shall receive.  I am your child and I am asking, please heal my sister.”  I wept that after weeks in the hospital, he never stopped praying and he again addressed the Lord saying… “I will not stop asking until you heal her, so just know, I am waiting” 

 There are countless scriptures that say some form of “and God heard my cry/prayer/supplication.”

 Well you all know this, but let me make it plain.  My God, the one and only true living God, God of all creation, of Heaven and Earth, God of the just and the unjust, MY Jesus, heard my cry and He heard your cry and He heard Charles’ cry and Charlie’s prayer and he DID heal my daughter and He blessed us with the care we need to KEEP her healthy.

 

 

[Psa 116:1-6 KJV] 1 I love the LORD, because he hath heard my voice [and] my supplications. 2 Because he hath inclined his ear unto me, therefore will I call upon [him] as long as I live. 3 The sorrows of death compassed me, and the pains of hell gat hold upon me: I found trouble and sorrow. 4 Then called I upon the name of the LORD; O LORD, I beseech thee, deliver my soul. 5 Gracious [is] the LORD, and righteous; yea, our God [is] merciful. 6 The LORD preserveth the simple: I was brought low, and he helped me.

 

 

Ariella still has Nemaline Myopathy but because of my God and because of the care He has placed in her life,  Ariella was home within three months being cared for by the best nursing team possible.  Not only did my baby leave the hospital but she did turn 1 in July, she started signing words in November and she started WALKING in December, she still is fed by a tube and still needs breathing treatments and suctioning of her lungs to keep them inflated but by GOD she is here and she is thriving.

 

The only words that will be declared over my children are God's Words. 

 

[Jer 1:5 KJV] 5 Before I formed thee in the belly I knew thee; and before thou camest forth out of the womb I sanctified thee, [and] I ordained thee a prophet unto the nations.

 

[[Jer 29:11 NLT] 11 For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope.

 

[Jhn 10:10-11 KJV] 10 The thief cometh not, but for to steal, and to kill, and to destroy: I am come that they might have life, and that they might have [it] more abundantly. 11 I am the good shepherd: the good shepherd giveth his life for the sheep.

 

 

One year ago today I heard the words that no parent wants to hear, the words that no parent should have to hear, BUT THEY WERE WRONG!

 

 

 

Merry Christmas and Happy New Year

Happy New Year and God's blessings Team Ariella. What a wonderful holiday season it has been for the Botts Family. Though our house seems to have been under constant attack with various individuals in the house being sick at some point over the last several weeks, to God be the glory we are all doing better and getting healthier. Our specail little warrior in particular has had a rough holiday season. Ella came down with an infection of some sort early in the month of December. She was experiencing symptoms that we thought were the result of teething, however, after two visits with her doctor it was decided to put her on anitbiotics. Well after less than 48 hours on the antibiotics Ella started to do much better. Less coughing, no running nose and she was sleeping better. We competed the 10 day regime of antibiotic and baby girl was doing great. Less than two weeks later Ella got sick again, her fever was less severe, but she was coughing a lot and had a constant runny nose. Becuase her fever was low grade the doctors were of the opinion that it was not bacterial this time, but viral and we would simply have to let it run its course. Well with a child with a compromised respiratory system letting anything run its course can be a challenge. However, the family pulled together, we increased her breathing treatments, as we do everytime she is ill, and to God be the glory after about 10 days once again our warrior has battled back. She is such inspiration and an amazing testimony to what an unrelenting spirit can accomplish through God's grace. She is MILAGROS!

Ella eating daddy's cake

This holiday season brought us many gifts including some special milestones. Ariella is beginning to walk with less assistance and even came very close to taking her first steps on her own. She still is unable to transition by herself. That is to say she is still not getting up on her own, she cannot sit-up or stand-up yet, but the therapist continue to come to the house weekly and give us new and different exercises to try. However, with all of the different exercises and support we have been providing her Ella achieved yet another mile stone during the holidays, she stood on her own without any support - for more than a minute! Praise God, the girl who was supposed to be bound to a wheel chair, stood up on her own. God is great, folks I can't tell you how moved and excited we were to see her accomplish this incredible feat.

Ella standing for more than a minute unassisted

Ella close to taking her first steps

A Christmas Miracle

In an attempt to not overwhelm our readers with one really long blog, we decided to post a couple of blogs to make reading them a little easier.

In addition to the amazing physical milestones that Ariella has achieved during this Christmas season, the holiday also provided us with yet another testimony. As we were waking up Christmas morning and finishing up Ariella's morning treatment we noticed that something was wrong with the electricity throughout the house. There were literally entire rooms with absolutely no power, while other rooms had power, but only in certain spots. Ariella was sick all through Christmas, including the week leading up to the holiday, which meant we had to increase of the number of treatments she received on a daily basis. Once we noticed that power in the house was an issue we immediately went into strategy mode. If we in fact did lose power we would have to take Ella to the hospital because she can't miss any of her treatments. There are three main power outlets in Ariella's room, one of which is used as the main hub for all of her medical equipment. Family can I tell you how awesome our God is, of the three outlets in her room, two were without power, only one worked and yes because our God is so kind the only outlet that worked was the one that powers all of her medical equipment. It took our utility company most of the morning and early afternoon to repair the issue, but because of God's grace Ella was able to get her afternoon treatment without any problems. Once again God spared us from having to be in the hospital on Christmas.

Ella rocking daddy's hats

Ella rocking daddy's hats