Monday, July 27, 2009

PLEASE PRAY!!

To all you sweet friends, family and strangers who have so generously poured out your prayers for our little Ethan and for our family... I ask that you pray - deeply, sincerely and filled with faith - pray for this precious 9 month old baby boy, Stellan, who's heart is very very sick... and has been since he was in his momma's tummy. He has recently taken a turn for the worse and doctors are not sure what "next steps" need to be taken. Some of you may be familiar with Stellan and his mom's blog, but if you aren't (I don't know them/have never met them but found them in the blog world a while back), please take a minute to carry this burden. I've posted the link below. His mom expresses feelings, emotions, frustrations that I can easily remember myself. And it was only by your prayers and God's grace that we endured... So, please...
Pray for this family.
Pray for this mom.
Pray for Stellan!

Monday, July 20, 2009

Jesus loves the little children of the world!

I wanted to give you an update on Alana Feliciano since a sweet reader wanted to know! I thought I'd give you a little update myself, and then copy/paste for you the most recent update her mom had left on their website. First, Alana's small bowel transplant took place a couple of months ago. There were many details involved and it can only be summed up to say, God's hand was in every bit of it. There were many struggles along the way as Hope (Alana's mom) would mention on their site, but God has surely sustained them and continues to do so. Alana was in the New York hospital with Hope for about 2 months. They are now allowed to be back home in Connecticut, however, she is still closely monitored via weekly hospital visits both in Connecticut and New York for any type of rejection and other lab work as she is on 20 different medications that can affect various parts of her little body. I know they would still covet your prayers for her complete healing! Here is the latest update from Alana's mom (yes the adoption went through without any problems and Alana is officially there's!)
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From Hope regarding Alana:
This past Thursday I met with two representatives from PSA HealthCare, which is a pediatric private duty nursing program. The women were very informative about the company and what to expect. I had many questions for them. My questions were all answered to my satisfaction. The company is asking the insurance company for 56 hours per week. I'm not sure if we will get the hours or if we will need them all. As a family we are discussing what times would be best and most beneficial to Alana and the family. I am starting to get excited about getting some help. Her care is tremendous and tiresome. After meeting with the two women on Thursday and getting to see a little how our family functions, they believe they have to perfect nurse for Alana. I hope they are right. I have been praying that the Lord send the right person to our home. Hopefully all the details will be ironed out in the next week. Please pray that all works out well. Alana has been doing pretty well. She still continues to cry a lot. Not sure what the issue is. Hopefully there is nothing wrong with her blood work. Any little decline in her labs can affect her in an adverse way. I do look forward to Mondays because she gets her blood work and I can see if she is doing ok. I get a little apprehensive between Monday and the next Monday. When she was in the hospital she had labs done everyday. So, we also knew right away if something was not right. This is the one thing I have had a struggle with, not knowing how she is doing inside her body and having to wait a week for the answer. Patience and trust has been the lesson for me. God knows what work needs to be done in me.


You can follow Alana's updates at http://www.caringbridge.org/visit/alana_kay

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Today is the second of a few more appointments Ethan will have to have to mark his ONE YEAR ANNIVERSARY since his cord blood transplant last August. I'm still have moments of shock that it's been almost a year since we were admitted into Boston Childrens Hospital for what would be 7 weeks of Ethan's transplant round of treatment. I'm sure I'll reflect more on that in a few weeks once we hit the actual anniversary date, but back to what I was saying.... Every year around Ethan's transplant anniversary, he will have to have several things checked to make sure no long term damage has occurred from the intense radiation treatments and chemotherapy he endured prior to the cord blood transplant. So he's already been to the dentist to check his teeth and bone structure, and all was well. Today he goes to have an echo done on his heart to ensure all is well there, and I'm confident it is! And in the next week or two he'll have an eye exam to check for cataracts or glaucoma (which are possible long term side effects). And he has his routine monthly blood work again on August 4th, up in Boston. We're already in prayer that those platelets are UP in number this time as opposed to last time. But really, all in all, from what we can tell on a day to day basis, ETHAN IS DOING GREAT! He's a 1 1/2 year old that DOESN'T SLOW DOWN! I'm telling you, I can barely keep up with his energy levels throughout the day! Wait, that's a lie. My energy level is no match for his! He's walking, babbling, understanding us, plays hard, eating better, loves to climb, loves music, gets into trouble, throws tantrums when he doesn't get his way, rules the roost, and still has a laugh and smile to melt your heart! So you see, he's your typical toddler!
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Who just so happens to be a cancer-surviving miracle....
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Ethan is precious.
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God is Amazing.
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And we're ever so thankful!
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Jesus loves the little children,
All the children of the world.
Red and yellow, black and white,
They are precious in His sight!
Jesus loves the little children of the world!

Monday, July 13, 2009

We're Back!

Oh my.... what a wonderful vacation we had. We went up to New Hampshire for the week and it was just bliss. We headed out last Saturday morning, which happened to be July 4th. And during our drive Adam and I reflected about how on July 4th of last year, we were being admitted into the hospital for a transfusion Ethan needed. It was a transfusion that lasted almost 8 hours, so we sat and waited with our little man, still not knowing what was going to be in store for us during the cord blood transplant phase of his cancer treatment. Amazing. It's the only word we could come up with.

Amazing that one year after that lonely July 4th in the hospital, we were heading out on our very first family vacation.

Amazing that we are one month away from Ethan's one year mark since his cord blood transplant in Boston.
Amazing that God has protected Ethan in ways we deeply hoped and prayed He would.

Amazing.

This vacation did so much for us. Not only did we enjoy stress-free time together as a family, but it was a much-needed refreshment for our spirits. To watch Ethan play at an amusement park, to take him to see a bear show and watch his excited expressions, to take him up to the top of a giant mountain and watch the wind blow in his face, to be able to treat him like any other healthy kid his age, to have sweet time together with my husband without work or other obligations getting in the way. It was perfect. Absolutely perfect.

And I'm so thankful to our friend who opened up her beautiful condo for us to use while we were there, enabling us to actually take this trip. Such a generous heart. Such a wonderful family! Thank you!
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And thanks be to God for all He's blessed us with. I'm such a moron sometimes. And I can easily sink back into discontentment, fear, or worry IN SPITE of all the blessings and generosity God has given us. You'd think I'd be an expert at leaving my cares with the Lord, but alas I am not. I often fall short. I still trust He's not through with me yet, though, so I have hope that one day I will be such a person. But in the mean time, I need a good splash of cold water in the face and remember just how far we've come.... by the grace of God.

I wanted to also let you know that we had Ethan's baby dedication last night at our church. When our pastor held Ethan in front of the congregation and said, "this is our miracle boy", try as I might I couldn't stop the tears. He prayed a beautiful prayer over Ethan's life and over me and Adam as we strive to raise Ethan God's way.

Amazing.
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