Immeasurably More

From time to time, I check my blog and update information about Grace.

Yesterday, I was reading my "Please Pray" page, attempting to make any needed changes/updates.  When I read this prayer request:

Please pray "That a spot would open for Grace to get into The Little Lighthouse next year (2013)---she is number 7 on the waiting list"

It hit me.  I was praying that a spot would open next year.  God blessed us in His perfect time this year with a spot for Grace at TLLH.  His plan is perfect.  I was praying in a way that made sense in my plan and in my time.  I'm so thankful that God is able to do immeasurably more than all we ask or imagine.  (Ephesians 3:20)

He continues to teach me through my precious child. 

First Day

Grace had a first of school at The Little Lighthouse today!  I left a sleepy and confused little girl at school, and made it outside and almost to my car before I cried!  Her teacher Ms. Beth said she did great!  I got updates and even a sweet picture during the day.  I know Grace had so much fun and made new friends today.  Grace was SO TIRED when I picked her up!  Ms. Beth said she refused liquids today and didn't have a wet diaper, but she took 8 ounces of milk when we got home and had a wet diaper before her 2 hour long nap!  Tomorrow is dress up day for Halloween!  :)

Here are some pictures to remember the day!  Thanks for your prayers today!

Quick Update

I have a very quick, but very important update!  I will blog about this in greater detail later, but right now I'm getting ready to have my long week at work and I'm in the middle of making Grace's Halloween costume.  :)  I wanted to let our faithful friends who have joined us in prayer over the last two years know that

GRACE IS STARTING SCHOOL ON TUESDAY!!!!!!!!!!!!!!!!!!!!

Grace will be in the Green room at The Little Lighthouse, and we are beyond excited and thankful.  What an amazing answer to prayers and continued proof that He is able to do immeasurably more than all we ask or imagine!

Thank you for joining with us in prayer for this.  Please pray for Grace on Tuesday that this will be an easy adjustment and that she will make new friends.  Please pray for Chad and me (me especially) as we adjust to the new schedule.  I cried during our screening just thinking about her not being home with me all the time.  But we are SO excited about this amazing opportunity for our sweet girl!

Two Years

Tomorrow will be two years.  Two years since we learned of Grace's heart breaking diagnoses.  Wow.

The years have taken away the sharp sting of that day.  It is now mostly a dull memory.  It reminds me of God's love and grace for our family.  Even reality is beginning to dull.

God is good.  Even if these past two years were ones of grief over losing Grace had God chosen to take her to heaven He would still be good.

He has taught me that He is good.  Period.  Not based on our circumstances.  Even during the bad times.  Even if he doesn't choose to heal.  He is still good. 

Boots and Standing Update

The punkin is doing great with her boots and her standing frame!

She wears her boots during her waking hours.  Her foot gets out of the right position at times, so we have to adjust it back, but other than that, she is doing great.  She has learned to tolerate them so well and she can even crawl in them.

We got her standing frame last week, and she's up to standing about an hour at a time.  We are working on getting in it twice a day.  She likes standing in it.  She reads books and plays with her favorite toys while she's standing.  She doesn't like to pull up or stand without the support of her standing frame, but we are working on that too.  She did not do well in PT yesterday, which was disappointing.  :(

The only pictures of have of her in her standing frame are on my phone, so they are not good quality.

Special Boots

My sweet baby girl got her "special boots" (AFOs) today.  I think she looks precious in them!  They have ladybugs on them with teal foam and light pink straps.  Next, we get to start working on standing and walking!!!  We should get our standing frame next week, and our PT is ordering our walker!  I am SO excited about this next step in therapy and the independence this will give Grace. 

 

Psalm 13: 5-6

"But I trust in your unfailing love.  I will rejoice because you have rescued me.  I will sing to the Lord because He has been so good to me." 

Palliative Care

Palliative care.  Those words mean so much to me.

Having worked as a pediatric nurse with the palliative care team for my patients, I never dreamed I would need them.  That is until October 2011.  Then I desperately needed them.

As soon as we got Grace's diagnoses, we started meeting with Dr. Boyte and Jackie.  We talked about things no parent should ever have to even think about.  We discussed best possible scenario and worst possible scenario for Grace.  I don't know if I was just protecting myself or pessimistic or what, but I honestly believed the worst possible scenario would happen for Grace and our family.

We talked about our birth plan with the palliative care team.  We wept and our hearts were broken in front of them.  We ultimately with their help made the most difficult decisions of our lives.  We decided to focus on Grace's quality of life, do everything we could to not let her suffer, and to let her die peacefully if God chose to take her to Heaven.

Our palliative care team walked with us on this life changing journey.  They listened to us and got to know us and our heart's desires for our precious Grace.  They supported us in unimaginable ways.  And I'm sure they would say they were just doing their jobs.  :)

These precious people have become like our second family.  They were present on Grace's birthday.  They helped us truly celebrate her life that day and even during my pregnancy.

Grace's first picture

Since then, they have celebrated every precious milestone with us and our dramatic and feisty 18 month old!   

Jodee, Dr. Boyte, and Jackie with our new family

Today is bittersweet.  Today Grace graduated from needing to see the palliative care team.  This is a big step!  We are eternally thankful for Dr. Boyte, Jackie, and Jodee for everything they have done and for all they mean to our family as well as so many other families.  Thank you will never be enough.

Grace and Dr. Boyte today