Wednesday February 27, 2013

I think our baby is affected by the weather. Today was one of those grey gloomy type days and our little baby was not her usual cheery self. She didn't have a bad day at all, you could just tell that something was off. She was particularly cranky about 10 o'clock in the morning and so we did a lot of holding and switching positions to help her get comfortable until her 12 o'clock treatment. The noon treatment went well and even though she woke up early she was comfortable enough to stay on the mask without getting too upset. The rest of the day was not too bad, we did do a lot of playing and she had a great physical therapy session; she sat up on her on for almost 10 minutes! Rain or shine, warrior princess Ella continues to make great strides.

One Year of Nursing

Your prayers, your letters and your phone calls worked. We are so pleased to announce that we have been approved for 16 hours a day, 7 days a week of shift nursing for, get this - ONE YEAR! I can hear you shouting for joy and praising God. This is very exciting for us. We are in the process of working with the hospital to schedule nursing that will accommodate both our work schedules and also ensure that Ella receives her around the clock care. This process can take some time but we you know what, we will be bringing our baby home. Hallelujah!

Tuesday February 26, 2013

The first two days of this week have been going pretty good. Monday afternoon Ariella had some real trouble settling while wearing the smaller mask during her afternoon breathing treatment. She slept very little during the day, and eventually had to be taken off the mask because she could settle down. The evening treatment, however, went well and she did get some good sleep. Tuesday afternoon dad helped out with the treatment and things went much smoother. Last night our baby also had a restful night sleep.

We don't have much by way of an update in terms of how close we are to filling the shifts for nursing care at home, but we remain optimistic that our time here is quickly coming to an end.

Happy Birthday Charles

This weekend we celebrated Ariella's big brother's 10th birthday. Charles has been such an amazing support and an invaluable comfort to his little sister during this entire process. We are so blessed to have him and so amazed at the level of involvement and attention he has committed to his sister during this very difficult process. It would be very easy for a young child to become jealous or even resentful, of his sister's special-needs, but in fact Charles is done the exact opposite. He has been so kind and compassionate that he often inspires us. You know guys, no one would have chosen the situation for themselves, we certainly wouldn't wish the situation on anyone else and yet I can say we are so blessed. Our brother-in-law Daniel and his best friend Brian held the very first in a series of fundraisers for our little princess this weekend. They were able to raise more than $1000 that will go to Ella's charitable trust. We are so grateful for their efforts and for the contributions of total strangers. It is very easy to see the love of Christ working through others on our behalf.

Overall her baby had a very good weekend. Saturday was a quiet day but a good day. Not a lot of therapy happens over the weekend, instead the baby was visited by her grandmother and auntie. My sister hasn't seen her niece in over four months so it was great for them to spend some time together. Yesterday the baby had a really good morning but got increasingly tired as the day went on. Last night she had a little bit of trouble with her respiratory treatment. At one point she had to be taken off of the ventilator so that she could be suctioned again. However, eventually she did get comfortable and was able to settle down.

What a weekend; no snow accumulation in Hartford, Charles turned 10 and Ella's first fund raiser was a success. Praise God for great weekend.

Grandmabuela

 The bible says “grandchildren are the crown of the aged...” (Proverbs 17:6, ESV). In many cultures grandparents are revered for the wisdom they have collected over the years. Once upon a time to be a grandparent meant to have the respect of your community and the honor of passing on knowledge of ancestry to the younger generation through storytelling and songs. In some respects our society has lost some of the reverence and appreciation we once held for the seniors among us. We have traded the tales and lessons learned from our grandparents for updates on Wikipedia and the top 10 Google search results. Now please don’t confuse a penchant for a simpler age with a resentment of technology. Tech is an amazing resource; because of tech we have been able to reach hundreds of people with the amazing testimony of our special angel here on earth. And yet even with the words and the pictures presented clearly across the digital divide we have heard countless people say that there is nothing like seeing Ella in person. No, this is not an indictment of technology; rather this is a celebration of someone who reminds us that even as technology progresses on, the lessons of the past are just as valuable today as they were when she was learning them for the first time. Allow us to use technology to acknowledge a true grandparent, Ariella’s Grandmabuela (Grandma and Abuela combined), Aileen Rivera.

To say that Aileen has endured much over the course of her time on this earth would be like saying black people in the Jim Crow south had a tough time. Aileen has endured a great deal of loss, pain, disappointment and regret, but to know her is to know a woman with a wicked sense of humor, an opinion for everything and a really big heart, a heart that she guards with her life because it has been broken too many times before.  However, when Grandabuela met her granddaughter for the first time all the fortification around her heart came crumbling down. Immediately Ella knew her Grandmabuela and Grandmabulea loved her grandchild unconditionally with her whole heart.

Unconditional love - in Greek the word is agape. In the oft quoted bible verse John 3:16 “For God so loved the world…” (KJV) the word for love there is agape. Because God loved us unconditionally He gave His son so we could have life. Grandmabuela has agape for Ariella. Because Grandmabuela loved Ariella without condition she did not hesitate to give up her independence, the comforts of her home and her city to move into a 10’ x 8’ hospital room so that Ariella would not be alone and her parents could continue to work. That is what love does. It does what needs to be done and it doesn’t ask questions. And furthermore she does it with a smile. Grandmabuela loves to be by her grandchild’s side every day and Ariella loves that her Grandmabuela is there.

We are people of faith and as a result we work very hard to see God’s hand in all that happens. Some days are harder than others, but somethings are blatant. Almost four years ago Aileen was forced into early retirement at a time when she had no desire to stop working. That early retirement set her on a path that has allowed her to be by her granddaughter’s side for the vast majority of her hospitalization. Even before now, Grandmabuela supported Rachel through much of her maternity leave at home, through countless doctor's visits and therapy sessions. It is not certain how we would have made this work if Grandmabuela was not in the position to love and support our baby the way she is able. I cannot say for certain what we would have done, what I can say is that Aileen has made our lives exponentially more manageable.

Thank you Grandmabuela for honoring the grandparents of yesteryear and reminding us of how invaluable good grandparents are. Thank you for loving Charles, IV and not marginalizing him in all of this, but loving him all the more. Thank you for encouraging your children to spend more time together, to ensure our marriage is healthy and strong. Thank you for investing in us, both your finances as well as your time. We will never be able to give back to you what you have poured into us. Thank you for letting me be “your boy”. I know I am not him, but I hope me is enough. Thank you for being strong for your daughter at a time when a little girl needs her mommy the most. Thank you for your agape Grandmabuela. We pray God’s peace over you, let the pain of the past be the rain in your present that brings forth a mighty harvest of joy, peace and love in your future.

Thank you Grandmabuela

We Love You    

Thursday February 21, 2013

Ariella had a good day today after considering she and grandma survived a night where their sleep continued  to be interrupted by one thing or another. There was a generator test that caused a lot of noise, in addition the baby's ventilator alarm went off several times throughout the course of the night. However, once she got through the night and was up this morning Ariella had productive therapy sessions.

Wednesday February 20, 2013

Good evening folks, thank you for continuing to read up on our amazing little warrior. Ella was up very early this morning. Grandma reports that she was up around 4 am, playing and hanging out while still on her breathing mask. This little girl is something else, you can never tell what will happen with her from one minute to the next. Our guess is she was up so early because she knew she was going to have a very busy morning. Ariella had treatments with physical therapy, massage therapy, speech pathology and occupational therapy all before her noon respiratory treatment. But in true warrior fashion Ella did great with all of her appointments. She was in good spirits this evening, but very tired, as you can imagine. Mom was able to administer her entire respiratory treatment - way to go mom! Ella went to sleep tonight without much difficulty and is resting peacefully. Praise God for another good day.

This is the chair Ella sat in for the swallow study

Ariella administering her own suction treatment