Wednesday, May 12, 2010

Still here...

Just in case anyone is still out there reading, we are still here. :0)

Things have just been super busy and I really haven't had a chance to sit down and collect my thoughts enough to compose a post. Plus I have just cannot seem to shake the blues I have had lately. I am still feeling so down because I have so many friends going through some tough stuff right now. I really don't like feeling helpless. I like to have an answer- be able to offer up some real help. But some of the things these precious friends are facing are the BIG kind of trails. The Giants. And, as I hurt along side of them I know that right now there just doesn't seem to be an obvious answer.

So all I can do is trust in God's perfect timing, and trust that He will provide all of the answers. I know He will. But waiting is so hard.

We have also been facing our own sort of trial, but today we were finally able to get a few answers. Ever since bringing Havyn home my mommy radar has been going off. Something just didn't seem quite right. Don't get me wrong, Havyn is precious and perfect in EVERY way and I wouldn't change a single thing about her. But at the same time, as her parent my job is to take care of her the very best we can- and figure out her needs. We expected her to have delays. Many children who have lived in an orphanage come home with them. We also had to consider that she was born 2 months premature so we expected her to have even more catching up to do. All those things taken into consideration, she was still having some issues and we were not sure exactly what was going on.

Havyn has pretty bad reflux. For those of you who have had children with reflux you know what I am talking about. Not fun. But along with the pain and constant spitting up (seriously, I feel somewhat of a walking burp rag) she struggles with her sucking on the bottle.

That was our first clue there might be more going on.

Then she also began to do some kind of odd jerky movements- sometimes sort of like tremors and she would stiffen up. She was evaluated by ECI (Early Childhood Intervention) and today we had a EEG done to see if there was any seizure activity going on. Praise God that was not the case. ECI and the neurologist both saw some possible signs of mild Cerebral Palsey. We cannot know for sure of course without an MRI, which we will have done in a few months on her first birthday. We could have done one now, but even if we knew now we wouldn't do anything any differently than love every second of her and work with her to catch up to her full potential.

She truly is amazing and we are so blessed to have her in our lives.

More than blessed.

Tomorrow we head to the Children's Hospital to have a swallow study done. Hopefully we can get some more answers there and help our beautiful princess enjoy her feedings a whole lot more.
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30 comments:

Christie said...

Amy,

Maybe this is why you were on my heart! Isn't it amazing how God works!?

Poor baby...I can't imagine how you are feeling. Please be encouraged to know that so many people (even one's you've never met) are praying for you.

Love you!
Christie

Amy Clemons said...

Praying for you girl. Hang in there.

Megan said...

Prayers going up for you all from Kentucky.

natali said...

Praying for Havyn and your family :))
Hugs
Natali

p.s. My mom had my twin sister and I at 37, and the doctors kept saying that we could have down syndrome and they wanted to run tests even before we were born. My mom's answer, No. That will not change the love we have for them.
We turned out perfectly healthy.
Yet, even in your situation, whatever answer they may give you, I know you, Amy, are going to love little Miss Havyn because of who she is and how much she means to you just because she is Havyn :))

StressedBlessed Mom in GA said...

Praying for clear answers to your questions. She is precious and very lucky to have you as her forever family - a family to advocate for her. Will be praying for you all.

Leslie

Mom to 9 Blessings! said...

Awwww she is so precious!

We will be praying for divine wisdom and answers to help her!

Praying for peace in your heart and love to fill every space of concern knowing God is able!

Love you bunches!
Jill

Kimberlie said...

Oh Sweet Amy! I will be praying for you. I am so glad that you listened to your "Mommy Instinct." So many times I have felt that something was not right with one or another of my kids. Friends would say, "Oh you are just a Nervous Nelly" or "that's so normal" and then I find out I was right. I believe the Holy Spirit guides us and let's us know when we need to go into "Mama Bear" mode.

As I said, I will be praying for you with all that is going on with your family and your friends.

Lisa said...

praying for answers!

Holly said...

I too will be praying for answers, wisdom and healing from Jehovah Rapha. I totally get the fight of the "blues" when you AND friends are going through things...but God is FAITHFUL...He is not only the God of the mountain-tops, but the God of the valleys as well.
I watched Letters To God, the movie, on Mother's Day and thought of Abby Riggs and cried. Please God...let this one LIVE a long life...please Lord. It is so hard to understand when little ones die. I cannot WAIT for Heaven when He will wipe away every tear from our eyes and HE will be our light. NO MORE DARKNESS!!!!!
Praying His love and light envelope you as you continue to walk forward.
Love,
Holly

Rebekah said...

I just started reading your blog, but I am definitely praying for your family and sweet little Havyn!

Shonni said...

Amy, I am so glad to hear from you. Being a mother is not easy...
and;your little darlin' was given to you, because you are HER MOTHER. I am so sorry for what you are going through. I think of you and pray for you..if you just need to talk, please feel free to email me
shassoldt@msn.com
I love you and your family and that little darlin. May the LORD give you grace and strength and help you find out how to help your new daughter.
loves,
Shonni

G. Lopez . . . . . . . . . . . . . . . . . . said...

Will be praying for you and your family! Blessings!

mjohnson said...

Praying for your precious baby girl. Wisdom and answers through the doctors and peace that overflows for Mama/Daddy & family.

Jocelyn said...

having 2 kiddos with some different medical challenges and constant worry and questioning, i understand... it's a tough thing when there are so many variables, so many questions about experiences and influences in their early life... it's like a puzzle you are trying to put together. but, it's a puzzle worth working!! praying for havyn and some answers.

Sophie said...

Precious little princess, she truly is a blessing. Your friends are fortunate to have your support, we all go through ugly stuff but God puts the right people in our lives to help carry our burdens.
Praying for wisdom for the doctors and a positive outcome with Havyn's test results.

One Big Fat Sugar Mama said...

sending you a big hug. xoxo

Jenny said...

Amy~

I'll be praying for your sweet girl! She is so precious as in all your kiddos.

I want to say "Thank You" for allowing me to read your blog. Your posts have allowed me to reflect upon my relationship with God and to be able to openly pray (something I was insecure in doing). My husband and I are in process to bring home a beautiful 2 yr old girl from Ethiopia. Frustration levels are high, but we know it's all in God's timing.

Blessings,
Jenny

Mom 4 Kids said...

She is such a beautiful child! I hope that you find help for her feedings and discomfort. We had a reflux baby and it is so heart breaking to see them struggle. Happy thoughts coming your way!

Angie said...

A huge sigh of relief that it wasn't seizure activity. Praying that you find an answer to her reflux.

trustandobey said...

Amy,
I am sorry to hear of your little one's setback. As a mom, what happens to our children, happens to us, too. But I will be praying that she will be given a clean bill of health and an answer for her tummy trouble. I am praying that you are able to put all of your worries squarely in God's lap and leave them there. And, in exchange, take His peace that passeth all understanding. I know you want to do that, but it can REALLY be a challenge sometimes.(This I know first hand.)
Lisa

The Philpots said...

Sweet, sweet girl. She looks like a trooper! We're so thankful for the positive news!!! God is good!

~ Lisa @ AbidingThere~ said...

she is perfect in every way. xo

Mo said...

Amy-
We are going/have gone through the same exact issues with Micah. I will keep you in our prayers too. As we have gone through these same things there is one thing I wished I would of know sooner that made a HUGE difference. Will you e-mail me if you'd like me to share. I don't want to post it for all to see necessarily.

blessings,
Mo

Anna said...

My husband and I just brought our daughter home from Russia 6 weeks ago. She has mild to moderate CP and was born 10 weeks pre-mature. She is currently in occupational and physical therapy, and has come a long way, but we also wonder what delays/struggles are a result of CP, and what are a result of being born pre-mature and being institutionalized for 17 months.
We were scared when we first heard of our daughters diagnoses, but like you, it didn't change the fact that we were still meant to be her parent's. My husband and I continue to dwell on Jeremiah 29:11. God gave us that verse at the beginning of our adoption, and it has continued to carry us through today.

Rhonda said...

Awwwww....Amy, I am so sorry you have had the blues lately! I pray that you can find some answers out soon! Love you all very much!

Rhonda

Christi Ucherek said...

Praying for you, for Havyn, and for your entire family! She couldn't have been given a more loving, amazing family to love her REGARDLESS of the outcome at the dr. office!

Love you girl!
-Christi

Dardi said...

Sweet baby, sweet Mommy...thanking God that He has placed her in a family that will find out what she needs to keep blossoming into the beautiful person God has created her to be. Praying for your endurance as you walk this road seeking the needed answers to bring Havyn relief. I wish I had known what was happening, but I'm pretty sure our whole conversation the other day was about me...next time tell me to shush!! :o)

Mrs. Michelle said...

She even looks beautiful with those wires all taped to her head. I am so blessed to be her Auntie Michelle.

Jacksmom said...

Just catching up and this was the first post I've read. I am so sorry. There are varying degrees of CP, so you're doing what is right, loving her with all you have, and doing everything in your power to help her have the best chances at normalcy. I'll be praying for you all as well.

Rachel said...

hi, im a mom of 6, 3 of which have cerebral palsy if you have questions or need to talk.
my email is
seoultrainonanairplane@hotmail.com

or our blog is http://josiecomehome.blogspot.com