Thursday, April 1, 2010

10 Months of Hope

"Hello friends! My mom insisted we take pictures today with my Birthday Lamby. I keep telling her that is boring! I am a mover and a shaker these days. I wanted to go outside and swing. That is my new favorite thing to do these days. Did you know the sun shines in Erie, Pa? I just learned that this week!"

"That Lamb just sits there and I have stuff to do and ladybugs to eat"

"She thought that if she put me in my "cage" I wouldn't be able to get away, I told her she was wrong! This is my, "haha, I am TROUBLE with a capital T look!""


"That big brother of mine makes ALL of us laugh! God knew what he was doing when He gave us that boy...he puts the F in Funny!"

"I decided to just stop for a millisecond and let her have her way. She puts up with a lot from was the least I could do. Here I am, 10 months old with my Birthday Lamby!" PS "Thanks for this pretty dress, Auntie Kate, I love it"

We can hardly believe it but Hope is now 10 months old, seriously, it is not an April Fools joke!

This month's Birthday Lamby pictures proved to be a much greater task that previously. Hope is now FULLY mobile and well, Birthday Lamby is NOT so she left Lamby in the dust! :)

Here is what Hope is up to these days:

She "cralks"...kind of a half walk/half crawl. She gets in the "downward dog" pose and walks on hands and feet! It is HI-larious! Video to come (as soon as I figure out how to do that)

She says "Bye Bye" and waves

She nods "yes"

She says "mama" and "dada"

She still prefers mama! :)


She says "uh-oh" as she drops EVERY last thing from her high chair tray

She plays "pat-a-cake"

She has two teeth. the bottom front left, and the top front right!

She still prefers nursing to all other forms of nourishment, but not if anything else is going on as she is curious about everything.

She is terrified of cats, dogs, and plants.

She weighs 16 1/2 pounds

She is wearing 6-9 month clothes and a few 12 month things that were handed down to us.

She LOVES music, especially Beyonce's All the Single is so funny!

As I sit here tonight and type this post I can barely believe all of this myself. two years ago I was still in the thickest part of grief, unsure that we would ever have another baby. One year ago, we were waiting on pins and needles for our baby girl after several "scares" during her pregnancy, and ten months ago our sweet Hope Amelia was born. The next day we were thrown into another kind of grief when we found out she had Epidermolyis Bullosa and we were not sure what her future would hold. Weeks later we found out that she in fact had Dystrophic EB, the deepest layer of the skin was involved. We prepared ourselves for a lifetime of bandages.

Six weeks later the blisters she had at birth healed and we no longer had to wrap her feet or ankles. We have never again had to bandage a part of our girl. She has defied every odd. She wears normal clothes, diapers and shoes, she even wears scratchy, yet amazingly beautiful tutus. She crawls and crawlks with NO damage to her skin thus far. She squeals with delight and throws fits like every baby her age. She knows only love and has taught us so much about gratitude. We have no idea what tomorrow holds, but for today, she is thriving and bandage free and we are brought to tears at the thought that God has brought us this far. When people ask about her EB and how she is doing, God is my only answer. It is all Him. We just wake up every day, count our blessings, pray and enjoy our kids! We are learning gratitude on a whole new level.

And as grateful as I am that she is doing beyond well, I am also sometimes guilty of feeling very guilty that we were cut this break. There are so many kids out there with EB that deserve the same break and yet they and their families live day in and day out with a kind of pain we cannot even fathom. Tonight as I tucked Hope in to bed, I said a prayer for those families. I pray so often for a cure for EB. It is a HORRIBLE disorder. I don't know if Hope will ever have "issues" with hers, but I know that I am blessed. I don't know why, I know we do not deserve this blessing anymore than anyone else, but we are on our face grateful that Hope is doing so great.

I guess what I am saying is thank you all for your prayers for our girl. I have to believe that God heard. I do not pretend to know why despite prayers for other EB babies, they are not as healthy as Hope. I am not God, but I trust He knows what he is doing, as you continue to pray for Hope and for our family, please also keep other EB families in your prayers, hopefully one day there will be a cure for this debilitating and often deadly disorder.

DISCLAIMER: I do realize that these pictures prove that her mattress needs to be lowered. I hadn't worried about it because she doesn't really sleep in there yet and we are returning the crib, as it is the replacement for our recalled one and I cannot stand the color! It also only has two mattress levels...this one and SOOO low it is tough to reach her. We are hoping to take care of this this weekend. We are VERY safety conscious and assure you all that we will not put our girl in harms way. Thanks for your concern for her safety! :)


Mommato4miracles said...

Rejoicing with you on the healthy beautiful little darling that you hold in your arms. She is gorgeous, and that smile is just infectious!!! Praying that she continues to have "no issues" with her EB, and that she continues to thrive.
Happy 10months Hope!!!

Anonymous said...

I hope she is OK

Alicia said...

I am so glad she is doing well. I can understand what you are saying about the other EB families as I follow some of them and it is very sad. I am happy that you do not have to share that grief for now or maybe ever. I love how she smiles in her photos. She is beautiful. My prayers are with you and your grief and with your family.

Cheryl said...

She is beautiful. Thanks for your insightful posts.

She looks so big'll have to lower the mattress in her crib...I am paranoid because my son lost his life in his crib. Not by falling out, but I guess I am just sensitive to safety in the crib now.

Thanks for bearing with me and my paranoia lol!

With love and hope,

Anonymous said...

thanks you share..................................................

Laurie in Ca. said...

Oh Kristy, what a blessing and miracle our Hope has been these past ten months. She is just so adorable and precious and such an answer to prayers. I sure wish I could reach through the screen and give her a hug and kisses. Enjoy each blessing and on this Good Friday, Jesus paid it all, once and for all, for us. Amazing love. I love you girl.

Love and Hugs, Laurie

asplashofsunshine said...

ADORABLE! Such a happy little girl! Hey, no more disclaimers on your own blog. If people wanna complain, then they can go somewhere else. :)

Stephanie said...

Happy 10 months Hope!!!
What a big girl!!! And doing so much!
Hope is the sweetest Princess!
Have a wonderful Easter.

LeeAnn said...

Love this! It's fun to get Hope's "perspective" on her day. She is beautiful and blessed! Praise the LORD!!

Julie said...

Too funny you mentioned the disclaimer, cuz I was going to mention that she looked like she could totally fall right out!! COngrats on all the good news about her!!!

Kelly L said...

Very sweet little girl - God has truly blessed you.

Love to you

Mama E said...

Oh I love that spiky pony!

Megan said...

I prayed for your baby soon after she was born but lost track of your blog and wondered how things were going with her.

I am amazed at how well Hope is doing now and praise God for her healing.

I can relate to some extent to the guilt you feel at having a healthy girl after such a scary diagnosis. At 5 months old, my now 15-month-old daughter was diagnosed with a very serious form of epilepsy that is devastating to development and can mean a lifetime of uncontrolled seizures and a multitude of other problems. She has beaten the odds and has been seizure-free for more than nine months. She is delayed but is making regular progress and I have great hope that she will catch up with her peers. I don't know why she responded to treatment where other children with the same disorder have not. It makes me praise Jesus, that much I know.

When I think of my new-found friends whose children are still battling the seizure monster, I try to turn the guilt I feel into action and advocate for more research and early recognition of the signs and symptoms to shorten the time between onset and treatment. And I pray. I pray for healing, pray for peace, pray for wisdom, pray for strength.

Remember that the "good stories" can give those who are still in the trenches reason to hope even when the statistics are grim.

Holly said...

Aww! Cute photos! I love the Birthday Lamb! :P