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

Ariella's Charitable Trust

We received a donation from a jewelry maker, DBTye Designs. It is an original and its stunning. We are so honored that such wonderful people are sharing their talents to help our baby. Please read the description and see an image below. This piece will be available at the silent auction during Ella's dinner on April 6th -

"I named this piece"Ariella" in honor of our little conquerer. This piece is made from demitasse spoons once belonging to the Waldorf Astoria Hotel as engraved on the inside. The attached bangles are sterling silver as is the doubles magnetic clasp. Next to the clasp is a sterling silver charm with the letter "A". The masterful artist lamp work beads were generously created for this event and donated by a very talented glass artist who wishes to remain anonymous. (Now that's the true spirit of giving)"

Monday February 18, 2013

Today was a good day. Mom and dad got to spend the night with our baby last night and have lots of play time this morning. Ella was all smiles in the morning and had a great physical therapy session. We also received some more training on her ventilator so that when do go home we will be able to use all of her equipment.

We were also excited because Ella was scheduled to have her swallow evaluated and if the test went well than we could start giving her solid foods. The good news is our little warrior does have a coordinated swallow, there are no issues there, however her swallow is still weak. This means Ariella is still an aspiration risk. She is able to swallow some of what she takes in through her mouth, but there is still a portion that gets stuck in her airway. These results were not what we were praying for, but there is still plenty for which to thank God.

Our baby is still growing, she weighs about 15 lbs and 4 oz., she can swallow, even if it is a little weak and she is making good improvement with with mobility and coordination. We trust God that Ella will be eating and running around with the family soon enough.

Sunday February 19, 2013

God has blessed us with another regular ole good day. Ariella's noon treatment went well, including placing the smaller the mask on her, which she absolutely doesn't like at all and getting her to nap. She woke up at a couple of different points between noon and four, however she went back to sleep after a little while each time she woke up. Mom and dad got some good play time in during the afternoon into the evening. After Ella's bath both mom and dad started and completed her entire respiratory treatment, including mom doing some deep suctioning, which was huge. And mom did a really good job with the suctioning. She feel asleep almost immediately once we got the large mask on her. We did have some trouble during the overnight treatments where the baby threw-up a little bit while receiving the cough assist treatment. Fortunately it was not a lot and mom was there to help out, but it also meant that we were all awake from about 4 - 5:30 am, actually mom was up earlier than that. Her vomiting also lead us to have a conversation with the doctors about limiting the use of the cough-assist machine while she is sleeping overnight. That aside our little warrior had a good day.

Saturday February 16, 2013

After a couple of amazing days it almost feels like a let down when Ella has a pretty regular day, but we bless God for regular and boring because we've seen what exciting can be and it's nice to have a regular day. Ariella woke up this morning with a fair amount of mucus and needed some good suctioning to clear it all out, but once it was gone had a good morning into her afternoon treatment. The afternoon treatment went well and we received a nice surprise, one of the baby's favorite respiratory therapist Craig a.k.a. Geronimo administered the treatment when she came off of her breathing mask at 4 o'clock this afternoon. She had a good evening with very little mucus and spent a lot of time playing and hanging out with her grandma with little to no disturbance. She had her night treatment and eventually feel asleep with no problems. Today was a good day

And you thought drinking was something

I am beginning to run out of ways to describe how amazing our God is and how far His grace extends. Just when you think God's grace through our little baby can't manage any more surprises, our warrior princess eats oatmeal! Yup oatmeal!

And just in case you didn't believe what you  just saw. Look again.

Today was a good day, she had a very productive morning, including physical therapy and of course her first attempt at feeding. With all the activity in the morning, she was left exhausted, but clearly for good reason. Her treatment went well in the evening and after some comforting from her mom and dad Ella did fall asleep. She had a great day family. We are so grateful for all of your love, support, kindness and most of all prayers. She is your baby too.

Save the Date

A purely discretionary fund has been set-up to help provide for Ariella's long term care. We are organizing a pasta dinner fund raiser scheduled for April 6, 2013. The proceeds of the dinner will be invested in Ariella's trust. Your investment will provide for -

1. Essential therapies to encourage muscle growth and development
2. Medical equipment to help with my mobility and life support
3. Research on my on the development of nemaline rod in general and my particular form of the disease specifically

More details are forthcoming, but please save this date. It will be held at St. Mary Czestochowa Church 79 South Main Street, Middletown, CT 06457; time to be announced. Additionally, if you know of any businesses that would be willing to donate items to be used in a silent auction that would be fantastic. Gift cards, discounts and the like would all be welcome donations. Please feel free to leave comments and questions on the blog.

Your investment could save Ella's life and many others.

Tuesday February 12, 2013

We apologize for the delayed update. Ariella had a good day yesterday coming off of the heels of her bottle feed. Her therapies continue to progress nicely, both during the day as well as over night. We also received some encouraging news about the prospect of us getting the necessary resources in order to provide Ella the ongoing care and support we will need moving forward. While it is too early to say anything definite we can say that the outlook is very positive. To quote Ella's pulmanologist Dr. Lapin - "There is a light at the end of the tunnel and it is not an oncoming train." So keep praying and keep reading and enjoy the video.


Monte Caballo

Monday February 11, 2013

As I write this I can barely contain myself and I want to get to the punch line right away, but first things first. We made it through the snow storm largely intact. We want to think grandma abuela for being such a trooper and riding out the storm with Ella in the hospital all weekend. Rachel had an opportunity to check in with the baby twice during the weekend but today was the first time I got to put my eyes on her in three days. You really can't understand how gorgeous this little girl is by looking at the pictures and videos alone. I know I'm being completely biased, but my goodness Ariella is such a beautiful girl, God bless her. I must've stared at her for at least 15 minutes before I did anything else; it was so good to see her again today. We made some pretty good strides in learning more of her treatment procedures and schedule; mom even got in on the act tonight and administered the baby's chest PT and used the inexsufflator (cough assist) machine. Together we were able to get through the entire respiratory treatment and get her on her ventilator comfortable and sleeping. As good as her night was, family it was nothing compared to what she did earlier in the evening.

Our little miracle, our warrior princess, baby Ella, fed from a bottle on her own. In spite of all the different challenges this little miracle has to face she continues to do the unexplainable. Her mom has never given up on the idea that Ariella will eat from her mouth and one of the things we have continued to ask the doctors about is can we go back to trying to get her to practice on a bottle. Well on a whim Rachel decided tonight to try and give her a bottle. Very slowly and very cautiously my amazing wife gave our daughter some milk through a bottle, what we did not expect is that halfway through the bottle feed Ariella would take the bottle out of her mother's hand and began to suck from it all on her own. That's right you didn't miss read anything, this little girl who hasn't had anything through her mouth and more than four months sucked from a bottle tonight. She didn't drink a whole lot and she didn't drink for very long but SHE DID DRINK! What's more she wanted the bottle. Now this will be hard for most of you reading this to understand, but through the power of this blog I can help to paint a picture for you. For months we would try to prod and cajole and push Ella to try and drink through her mouth. At one point in time she actually seemed to develop an aversion where she didn't want anything to do with the bottle. We had received advice some different individuals to not push her too hard because eating should be enjoyable and not work and so we stopped trying for a while. And than the surgery, which led to this hospitalization. We had no expectation, no thought, Rachel just decided, you know what God, why not try a bottle tonight let's see what you will do. And did He ever show up. Our prayer has always been that Ella would be able to have dinner together with the family and look at what is happening. Its not just about the fact that she drank a little bit from the bottle tonight, its that she wanted to drink from the bottle. I think what God is teaching us and Ella through this second chance at life is that it doesn't matter how bad we as her parents or family want her to do something, it has to come from within herself. God has His plans for her and when she is ready together they will do what He has already seen her do in Heaven. In the mean time those of us that love her have to do what her Uncle/Godfather Troy has been trying to get me to do from the very beginning - "keep praying and believing and living in faith" and be patient while God and Ariella do what they do to. I praise Jesus for the amazing work being in done in our baby's life. She is a wonder. Thank you God. Keep praying folks, It Works.

Buried under, but still moving

So much like the rest of our friends and family in the Northeast we've been buried under for the last couple of days, trying to dig ourselves out a little at a time. Yet in spite of the crippling weather the hospital staff continues to shine bright. I have to once again salute the staff at CCMC for going above and beyond our reasonable expectation. Last night they carpooled, they collaborated and they didn't miss a beat. These amazing people worked together to make all of their patients did not experience any let down in service, including our precious. Ariella received all of her requisite care; she even had an opportunity to catch up with one of the nurses that remembered her from when we were downstairs but didn't have a chance to care for her at that time. We are so blessed to be surrounded by so many amazing people that love our baby so much.

Friday February 9, 2013

The snow is falling like crazy here in New England, blizzard is in full effect and in spite of all the craziness outside Ella still continues to do well inside. Today was a good day, respiratory treatments went off without a hitch and our baby was in good spirits all day. Please pray that the storm doesn't impact the hospital's operations and that God extend traveling mercies to the hospital staff that needs to be on the roads. As for the rest of you, I hope your home safe with the ones you love.

Check out momma's stretchy jeans and her sleeping buddy. Cutest baby ever.

Amazing

So we mentioned in yesterday's post that Ella was working with a new physical therapist that specializes in cranial-sacral massage, her name is Denise. Denise is not the first cranial-sacral therapist Ella has seen. Prior to this hospital admission our baby was being seen by Dr. Sharon Vallone, a chiropractor that specializes in cranial-sacral therapy
(http://www.kidspaceadaptiveplay.com/). Dr. Vallone is great, she has a special place in our hearts. Because of the work Dr. Vallone has done and the success Ariella has had with cranial-sacral massage in the past we were very excited to hear the hospital was making this service available. It turns out Denise had another session with Ella yesterday and on my goodness this woman is a gift from God. All of the PT's have been great; Josh and the ladies that work with him are very good, Denise has taken the progress they have made and combined with her skill in cranial-sacral massage has catapulted Ella to the next level. She is making great progress with being comfortable on her belly and being able to hold her head up from various positions. There was even an occasion yesterday where Denise was positioning the baby to sit up on her own, and when she let her go, for a few seconds our baby was holding herself up. That is awesome and we bless God for it, but she has kind of done that before, however, yesterday when she started to lean forward because she can't keep herself all the way up just yet, she put her hand down in front of herself and for a second pushed herself back up. Now she didn't stay up and she didn't push herself all the back up, but this little miracle with a rare muscle disease who was supposed to have died a couple of weeks ago WITH ONE ARM PUSHED HERSELF BACK UP. You can try and tell us there is no God if you want to, but we have seen too many miracles manifest themselves through this amazing little warrior for us to ever doubt HIM.

New Treatments

Hi Folks, Ella's progress continues to move forward. We are working another doctor on the pulmanology team, Dr. Collins, who we absolutely love, and she has some new ideas for Ella's care. Specifically she is getting an additional treatment from a respiratory device called an inexsufflator or cough assist machine. You can check out this YouTube to learn more about the cough assist (http://youtu.be/oUMyb9h2-2w). Dr Collins is hopeful that the cough assist will help Ella move around her secretions to the degree that she grow to clear them on her own or at least to get to the place where she doesn't need to be deep suctioned and will only briefly suctioned through her mouth.

Treatment aside Ariella had a really good day. We had some trouble getting her on the breathing mask for her afternoon session, but once she got settled the rest of the afternoon wet well and she had a really good night.

Her good night carried over into a good day today. She had a really productive physical therapy with a therapist that is trained in cranial-sacral therapy. This is a kind of chiropractic massage that is intended to move the cranial-sacral fluid (spinal fluid) to parts of the body where there is restriction because the fluid does not make it to those body parts on there own. Because of Ella's condition her spinal fluid is restricted to flowing freely to all parts of her body which leads to restricted mobility. The theory behind this kind of therapy is if we can bathe those body parts in spinal fluid we can increase her mobility.

10,000+ Page Views!

WOW can you believe this. Thanks to all of you, the blog has just gone over 10,000 page views. This an amazing feat and we are so grateful to all of you that have taken such a keen interest in our precious little warrior princess. Please continue to check the blog regularly and we will make certain there is new content and valuable information so you can keep up with our baby.

Enjoy this video of our sweetie pie playing in the booster seat that the hospital was able to find for us. We can't believe how grown up she looks.

WELCOME TO HOLLAND

Our-kids.org

WELCOME TO HOLLAND

by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

We Are Victorius

Lord we thank you today for the strength to resist the temptation to get into the dark.

We resist the urge to lay down and drown in the deep suffocating silence of depression.

God we thank you that you are fortifying our hearts and reinforcing our minds. 

Our spirits are strong and we will not give in.

We refuse to lie down and be broken.

We will fight.

We will fight through praise and joy.

In the same way that Ariella fights with a smile and with laughter, we fight with her.

We fight through our prayer.

We fight by not giving-in.

We will be the light in this world and we will rage against the onslaught of despair and depression.

We will not depend on a system that is so severely fractured and broken that it's only recourse is to take from a family the shining light and life of the child they love and want to raise.

We will not volunteer to give our child over to a system that does more to break families up than bring them together.

We will not we will not bow down to our enemy.

We will not surrender our heritage and future to the darkness of this world.

We will stand strong.

We will be your humble servants and we will endure.

We will be the voice crying in the wilderness; we will let others know that there is one God and He loves us. Lord Jesus we will shout your name from the mountaintop and we will not be quiet about it.

We will not die, but we will live.

We will not go quietly into that good night.

We will let the light of your spirit burst through us and we will consume the dark with the fire of your light.

We will overcome evil with good and together we will stand united.

We will let all others know that it is by your blood, through your word, and in your name that WE ARE VICTORIUS.

Super Sunday

Hello everyone. So I know many of you were as excited for the Super Bowl as I was. Rachel was sweet enough to suggest I go join some friends and watch the game with them instead of staying at the hospital, but there was no way I was gonna leave my ladies and go to a Super Bowl party. Instead we had a mini Super Bowl bash in Ella's hospital room. Check-out me and my lil precious enjoying some BLT flavored chips. Yeah that's right BLT FLAVORED! So football aside Ariella had a good day and has been sleeping peacefully because we were able to get her overnight respiratory treatment done before 8 pm and we also did not have any trouble with placing the breathing mask on her. Once we got her on the ventilator she passed right out. We definitely need to be sure we get her over night treatment done on time moving forward, it makes a huge difference.

On another note I need to share something else with you all. I cannot say for certain I understand why it is we have been selected to carry this cross. It's easy to say something like, 'we are the best parents for Ariella' or 'she will bring us closer together and closer to God' and that may very well be, but I can't help but it think, there must have been an easier way to achieve that goal. But all that is besides the point; since we have been chosen to go through this I might as well share some of the lessons we have picked up along the way. The most important piece of learning this journey has taught us so far is that no one knows your child better than you and therefore you are the boss. God bless the men and women who dedicate themselves to studying the human body so that they can attempt to help preserve our health. Bless them for investing all of the time and resource and effort to become doctors, nurses, therapists, etc. These are incredibly intelligent people with lots of knowledge and ability. They are experts in their fields, but they are not the expert of your babies. You are the expert of your child/ren and if you are not comfortable with the direction that your child's/dren's care is going you change course. This may sound intuitive or even obvious to some of you, but I can tell you before this experience it was something I would have not considered. In some respects I was probably the ideal patient or parent of a patient because I put a lot of confidence in men and women with more education than me, when in reality no one has more education when it comes to our children than us. Rachel has understood this from day one and as a result Ariella's care is based on her specific needs.

Children are God's most valuable blessing and every parent is entrusted to treasure them for the little bit of time that we have them because every parent also understands they do not stay children and they do not stay ours for long. They grow up, they move out, they fall in love and then they belong to someone else. While they are ours we must treasure them and that means telling someone who went to school for a lot longer than you, who knows more about medicine than you that you disagree with their plan, if you do, and that you want to do something different. You are the boss of your children and no one on earth knows them better than you.

Saturday February 2, 2013

After having a couple of rough days Ella had a pretty good day today. There were a couple of occasions when she was very junky and we could hear the mucus building up in the back if her throat, however instead of simply suctioning her has we had been, we tried holding her and placing her in different positions and that seemed to help. It is also clear that she has started to grow accustomed to being held more and more. It is almost to the point where the only way to soothe her is to hold her. I am guessing we have grandmabuela to thank for that (smile). Well we bless God that we are able to hold our baby. It was tortuous when we were in the PICU and could not squeeze our baby. Thank you Jesus.

She also had some difficulty falling asleep last night. I got the opportunity to administer her entire respiratory treatment in the afternoon and started her evening treatment. Both treatments went well, however in the afternoon I was able to place the breathing mask on Ariella without any issues; she fell asleep right away for her afternoon nap. However when it came time for her to be placed on the ventilator over night we were not able to place the mask as easily and as a result we had to play with it several times, which only served to further aggravate her. Eventually we got it right around 10 pm. It is clear that the placement of the mask is essential to her comfort. She slept well for the most part. It took her a little while to fall back to sleep after her 4 am treatment, but all in all had a good night.

Friday February 1, 2013

Today was a good day folks. Our lil momma had kind of a tough morning, but got a really good nap in during the middle of the day. Mom and I got some good cuddle time when Ella when she got up from her nap. She also had a very productive occupational therapy session today.

As it pertains to discharge we are still moving forward. Nothing has been finalized or approved, but there still continues to be, at least the appearance of, some activity that could lead to us getting the support we need for Ella.

On another note we want to shout-out Lou and his staff at the Comerio Restaurant in Hartford (http://comeriohartford.com/docs/meal_menu.pdf). Lou thank you so much for making sure my wife and I got dinner tonight. Folks please patronize this man's restaurant. They make great food. Comerio is located on Park street in Hartford. Please check them out.