Wednesday, April 28, 2010

Monday, April 19, 2010

Update on Drew & Finger Painting .... Gone Wild!

DREW:

Drew was taken off the ventilator today ... thank you, Lord!!!!!!!!

HE IS IMPROVING .... still not out of the woods but they "can see the clearing". Just amazing!!

Keep the prayers coming for this sweet 10 year old boy!

If you'd like to leave a note of encouragement for Drew & his family, please sign their guestbook at: http://www.caringbridge.org/visit/drewdotay

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This post was going to be about a perfect day together at the park with Lily.


Watching my daughter discover ...


Watching her climb all over the place & crawl around ...



Pushing her on the swing "way up to the sky & to the mountains", as she requests in her adorable English ...




Look at my sweet girl!


Thought I would share our happy day at the park.

Just us.

Having fun & feeling so blessed for "normal" days of life at home!

So sit down to blog & I set Lily up in the high chair to do some finger painting.



This will be fun ...




"Great idea, Mom!!"



Let me see how this stuff tastes ...



And quickly things got out of control ...



All while I blog ...



I know what your thinking: Mother of the Year! :-)



Enjoy each day & embrace each moment ... even when the kids touch the walls with paint all over!!!

Life is good!

Friday, April 16, 2010

Scrappin'


All is well here at home.

I have not heard any more news about Drew since the last posted update from his mom, Jen. Thank you, to so many that are praying & thinking of this sweet boy!

This morning Lily is with her Chinese babysitter & I am camped out at Chick-fil-A doing some digital scrapbooking. I am doing pages of Hannah from last year. I already finished Lily's 2009 scrapbook album & now I am catching up on Hannah's 2009 album.

Above is the page I just did ...

What a treasure this girl is to my heart! Thank you, Lord for the way she has danced through the storms in her life.

Happy weekend & All God's Best from HOME --

Thursday, April 15, 2010

Update on Drew

Here is tonight's update from Drew's mom, Jen.

If you would like to receive future updates, please join his caringbridge site: http://www.caringbridge.org/visit/drewdotay

"Drew is still in critical condition. We are still struggling to accept that this has happened. Although there were some lab values that improved overnight, his lung function remains the same. The improvement in his labs initially sent us soaring with relief, but it's Drew's lungs that have received the severe injury and that's what the doctors are focusing on. The doctors are encouraged that his lungs have not worsened and we are holding onto that. Staying stable is the hope right now with improvement hopefully soon. Drew started treatment for ARDS with 2 medications last night. The tests continue to trickle in as negative for infectious disease but there are still some pending, but unlikely to be positive.

Drew has the advantage of being young and healthy prior to his transplant and even being generally very healthy even post transplant. We are praying hourly that that his youth, health, along with prayer and the amazing doctors who are doing everything they can for him, can carry him through this. The severity of this is extremely painful to us and only made worse that we are not subjected to Drew's constant stream of laughter and chatter that usually accompanied trips to Boston for the last 4 months. They are sedating him a little more in order to help his lungs to rest but he still responds to us when we talk to him.

Many of the people that we have met on this journey have stopped by the ICU to see Drew including Frannie. Lori and Kadiesha from the CAT/CR, Nuessa and Caroline from 6W, Joanie and Brianna from 6E. Of course, his much loved primary care doctor Alli has also been a regular visitor. The transplant world is actually quite small and word about Drew spread quickly. The support from everyone at the hospital is amazing.

We don't know how to thank everyone for your prayers but ask that you please continue them. We believe they have helped Drew stabilize and pray along with you that they eventually help see him through this. We will try to update everyday but please be patient with us. They have told us again that it's one day at a time and tonight we will pray for tomorrow.

Thank you,
Proud Family of Andrew Liam D'Auteuil "

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Drew & his family are never far from my thoughts. It is just unreal how sick he is right now at Boston's Children's Hospital. It is like I am there in his room hearing all the beeps from the machines & the sound of the IV machine.


Aplastic Anemia & the treatment options are just a nightmare!

I also keep praying for Hannah to never experience recurrence of her Aplastic Anemia. Currently her blood counts are safe enough to go on & live a healthy life but recurrence is a possibility (and a fear that I fight off in my mind each day!). If her illness does recur, she will go straight to a bone marrow transplant.

I have not told Hannah about Drew's current fight because to her "a bone marrow transplant is a cure". No need to change that perspective at this point in her life. For many a BMT is a cure & I just continue to pray many, many, many times a day that Drew pulls through his current critical condition.

Please also pray for Drew's parents: Jen & Pete and his older twin brothers: Kevin & Ryan. A precious family fighting to see their youngest son & brother smile again!

I end with this prayer from my friend, Cindy, from church:

"Lord I pray that when Drew and his family pass through the waters, You will be with them. And when they pass through the rivers, it shall not overflow them. When they walk through the fire, they shall not be burned, nor shall the flame scorch them. For You are the Lord their God. Isaiah 43:2-3"


All God's best from HOME --

Tuesday, April 13, 2010

Please Pray


My heart is so heavy this week.

I've made friends with other moms whose kids also have Aplastic Anemia & a few of us email every week or so.

We vent to each other. Share our fears. Share our joys. Share that we can't believe we are all stuck in this boat together with kids with this crazy terrible disease.

Well, one of the kids, Drew, had a bone marrow transplant (BMT) 4 months ago & has been sailing along defying all the odds of possible BMT complications.

Just this Sunday he started to come down with something so his mom took him to the ER at Boston Children's Hospital. He was admitted & by Monday morning he was on a ventilator in the ICU. Just stunning considering on Saturday he was outside playing with a friend & even still looked good when his mom took him to the ER on Sunday.

Would you take a minute & please just pray for Drew & his family?

This precious boy was born smiling & I pray that his parents see his smile for years & years & years & years to come.

This is a picture of Drew & his mom, Jen, on his 100th day celebration post-BMT.

Thank you for your thoughts & prayers!!

Sunday, April 11, 2010

Multi-tasking

Some days I multi-task better than others.

This week I was getting my hair colored at the salon.

Problem was I needed milk, half & half and I needed to get home while the night was still young.

It takes HOURS to get this hair of mine colored. I have "very-gray-once-was-brown" hair, thanks to the genes on my Mom's side.

Well, the grocery list was calling & there was a store right in the same shopping center as the hair salon.

So, yes. I did it. I shopped with cape on & hair color all over.

Life is short ... fortunately so was my shopping list.



No one even really looked at me funny .. imagine what could I accomplish if I keep up this new art of multi-tasking?

The possibilities are endless!

Wednesday, April 7, 2010

All is Good

I haven't blogged in a week & here it is again Wednesday ... anything but a "Wordless Wednesday" for me!

All is good.

Hannah got labs drawn yesterday (because I am paranoid -- do you blame me?!). Her doctor said we could start going once a month to have her labs done but I just couldn't wait that long to know what her counts were doing. Especially since we lowered her medicine again (per her doctor at NIH). Her counts were what they were about 2 weeks ago (aaah, sigh of relief!) & now we can wait another month to check her counts ... but I am going to take her in 2 weeks ... just to make sure!

We had a great Easter weekend. Really just super relaxing. I felt so incredibly thankful to just be home. We did not make big plans or do anything extravagant but it was super relaxing. The girls had a great time coloring eggs on Friday at my friend's house (thanks Wendy!!!), Hannah made an awesome Easter cake, we all went to church & then had a family dinner at home & did a mini Easter egg hunt in our backyard on Sunday after church.

Lily continues to light up the house with her personality & her endless sense of humor. On April 1st, Hannah was really into the whole April Fool's thing and Lily did not miss a beat. I swear, at 2 & 1/2 she seriously understands everything!! I came into the room & Lily said to me, "Mommy, doggie go poopy upstairs ...I show you!" And she proceeded to walk half way up the stairs & then turned around & said "April Nool's!!"

Yes, she said: "April Nools".

Does it get any cuter??!! Adorable.

Lily has been ready to potty train since about August but I have been super lazy & have preferred to just change diapers (pathetic, I know, but there were bigger problems in my world!). At this point, I am finally getting with the potty training program & Lily is proving herself more than ready! The past two days she has been on task about running to the potty for her "more serious" potty business.

Easter was particularly special this year. Last year, Hannah's counts were too low to go to Easter service at our church. I can't describe what it felt like to sit there with my two precious daughters & my husband. What a day!

I am so thankful to the Lord for His grace & goodness to our family. I know that before Hannah's illness I took each day as a gift but somehow life is just sweeter after all we have been through. Celebrating the resurrection of Jesus had new meaning to my heart this year.

"Let them thank the Lord for His steadfast love, for His wonderful works to humankind. For He satisfies the thirsty, and the hungry He fills with good things." Psalm 107:8-9

All God's best from HOME


Coloring eggs at Miss Wendy's place.

Easter Egg Hunt at Home


Decorating our Easter Dessert

The Big Reveal!

Playing with bubbles from the Easter basket



Potty Time & Loving Life!