Wednesday, September 1, 2010

MRI Update

First of all, this first picture might be my favorite picture of Miss Wesleigh yet! I absolutely love it!

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Many of you have been asking about the results of Wesleigh's MRI. We went to the neurologist today to get the results. I didn't leave the office with the report I was hoping for. I unrealistically expected her doctor to tell me she was perfect and to have a good life. Instead, he told me that she has a tethered spinal cord and that we will need to keep an eye on her until she stops growing. Actually, what the dr. said was that every child with spina bifida has a tethered cord. How did I not know this? With all the research I did before going to China, no one ever told me that. In a way, I'm glad because it is possible that would have deterred us from accepting her referral. For those of you who might not know, Wesleigh's referral said she had a repaired meningocele. That is a very mild form of Spina Bifida which has the least amount of side effects. Today, I also found out that Wesleigh has a more serious form of SB. She has myelomengocele. This means that there was more nerve involvement than we previously thought. Bottom line, she's the same cutie bug today as she was yesterday and a label doesn't change that. I would be lying, however, if I said it didn't upset me.

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So...what does this all mean? Having a tethered cord means that her spinal cord is not "floating" like it should be. It is attached to her spine and as she grows, her cord will be stretched. This could cause her to start losing some function of her legs and bowel/bladder control. There is a surgery to detatch the cord, but it does not come without serious risks. This would be a last resort. Nobody is saying that she will need this surgery, or even have these side effects.
I am choosing to believe that she will be fine, and bottom line is, she will be. There are many families facing much worse diagnosis' for their children. This is not life threatening. I know that God has a mighty plan for her life. I will not lose sight of that.

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The good news is that I adore her doctor. He has been very kind to me. I pretty much argued with him a couple of times (very nicely). I even asked him, "Are you sure?" He is very patient and understood that I needed a little time to digest it all. I think he's pretty smitten with Miss WJ too. Can you blame him? This outfit is what she wore today so you can imagine the attention she received at the office. She was definitely a show stopper! If you have to spend lots of time with a doctor, it's nice if you really like him!

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The boys start their football games this weekend, so pretty soon, I'll have something else to post beside tutu's and bows. I really should be taking pictures of all the bruises those boys have been coming home with! Good Lord!! I can hardly stand it! I just close my eyes and hope for the best!
Hope you're having a great week!

24 comments:

Aaron and Erica said...

So sorry you did not get the news you were hoping for today. I will be praying for you as you process all of this new information. WJ is such a cutie and I love reading about the joy that she brings to your family!

3 Peanuts said...

Oh sweet Jen. I am sorry. I know this is not what you were expecting but after meeting Wesleigh Jane I DO KNOW that God has big plans for her. And I do know that you are the best Mommy for her. I love your positive attitude! Wesleigh seems perfectly normal in every single way and I cannot see anything holding her back. Hugs, love and prayers.

Oh my GOSH...and how cute is she? LOVE these photos.

vicki said...

I am so sorry. I know just how you feel b/c we just had a similar experience when we had Jenna's first post-China medical follow-up regarding her SN. And we found that what we are dealing with is not what we were expecting at all... my heart sank as well. But I told myself the very same things....that God spared us the details at referral b/c who knows if that may have deterred us and he certainly wanted her with OUR family.. Good news is, for both of our girls, God knew their conditions all along and had His plan for them that included US!
But totally feelin' ya if you want to email me!
Prayers coming your way.

Preppy Pink Crocodile said...

Oh I am so sorry it was a difficult appointment! But just look at that sweet face. God really does have big big plans for her. And she is now in the care of an amazing family and wonderful doctors. I love the tutu, pig tails and pink shoes- adorable!

DiJo said...

First of all, I love that little Tea Cup!! And, I know that God has big plans for that tiny package of joy and love! I know it was hard to get the report you got today. God chose Wesleigh Jane for your precious family at this very time. And, HE will equip you regardless of TeaCup's diagnosis down the road. Today, I will give thanks for the walking miracle that she is! And, of course that I get to be a part of her life, be it long distance!!

By the way, that first photo is absolutely darling of her. You captured her perfectly!!!! What doctor wouldn't be smitten with that little cutie!!

Love,
Di

Football and Fried Rice said...

Oh, Jennifer - so many things. First - can I say THANKS for more pictures of Wesleigh Jane in "my favorite" hair do :) Seriously - COULD NOT be any cuter. The pictures of her on your porch in that outfit? Gorgeous!!

I really appreciate your candidness about Wj's spina bifida. I remember talking to you and the MOST I took from our conversation was how well equipped you ALREADY were to be Wesleigh's mother. How amazing it was that God had given you the confidence, strength and love that you'd need for her...that hasn't changed.

Sending Hugs your way!

Sara

p.s. I KNOW exactly what you mean about the bruised bodies. I have (2) of them - even with all the padding they wear. {{sigh}} Unfortunately, they are kind getting too old to allow me to take their pictures shirtless, etc :) modesty! I hope it lasts!!

MississippiZen said...

Hi sweetie .... give me a call if you get a chance, I have many friends with children who went through the TC surgery as most children with Raegan's condition also have TC. I know it was not the news you were wanting and I understand how hard it is to hear but if you are like me, you just want to know everything so you can do the best for her and make her quality of life as perfect as it can be.

love you and Wesleigh and will be here to talk anytime.

Margie
PS .. Wesleigh is just amazingly precious .... can't wait to get our girls together again :)

Christy said...

Jen,

I am so sorry the news was not what you wanted to hear but we both know that this is not life threatening and she WILL be fine!!! God has plans for this little one and she will be all that God intended!! We are in the same boat with Finley. Her referral said repaired meningocele as well- nothing about a mylo. I too worry about her being teathered and I totally know this is a possiblility that we need to be prepared for. I just have to trust that God clearly chose Finley for our family for a reason and He IS in control!! It is the same with WJ-- God is in control!!!

Big hugs,

Christy

Number 6 and no more counting! said...

so sorry you have been going though this. Please know you are in my thoughts and prayers!

And, I can see why Miss W was a "show stopper"! adorable!

Lea
xo

Lindy said...

Praying for you and your sweet girl. I know how well she has done with her walking since she's been home. I hope everything else goes as well for her.

Those pictures of Richard throwing her up in the air are some of my favorites, although they make me nervous. LOL

elliotts said...

I have really enjoyed following your blog and all your posts of your beautiful children. My husband and I are almost logged in with China. We had our I-800A fingerprints on Monday and Tuesday this week...we are alsp switching to the SN route...we have reviewed 2 files of children and unforutnately have had to turn them down in fear that they are too 'sick' for us to handle. It has been very diffifult. My hope is that once we officially have a log in date, we will have a good match for us instead of the other way around in us trying to match ourselves with a child. (Because if it was up to me, I would bring all the children home!)

Hugs to you as you make the best decsisions you can for that beautiful little girl. Know we are all here for you.

Diane

Kat Shank said...

I can't even imagine what you're going through. But I know I've heard many times 'God doesn't give you anything you can't handle'. And even though we share little in common, I so look forward to seeing these pictures of this little princess... so, for that, I send you big hugs from me and all my critters.

Tricia said...

I am praying for you all Jennifer.

Anonymous said...

We'll take it one breath at a time and enjoy EVERY moment with her. He's got the grand plan and we'll follow in faith. I know you and you will keep laughing and loving with Miss W!!! I think your heart is guiding you correctly and she'll be just fine. Lauren McG

Keisha said...

I'm so sorry that you didn't get the news you were hoping for. However, I AM glad to see that you have the RIGHT attitude about it! You're so right.. OUR GOD is Mighty & He IS our Healer!
I pray that this will NOT affect Miss WJ in the least! Keep your chin up & keep the Faith!
I just wanted to leave you with a few short lines from a song our group will be performing Sun. night. You may have heard it... if not.. GO LISTEN!!! LOVE you!

Our God is Greater..
Our God is Stronger...
God you are Higher than any.. other.

Our God is HEALER..
Awesome in Power..
Our God..
Our God!

Linda said...

I am just so very grateful that God placed Wesleigh Jane in our family! What a joyful and courageous spirit she has-like her mother. He will continue to provide everything that she needs and everything that you and Richard and the boys need to love and protect her. Even the doctor is not saying she will have problems, and we add to that God's promise to do "exeeding abundantly above all that we ask or think, according to the power that works in us." We are, of course, here for anything and everything we can offer--most importantly our prayers--but our heavenly Father--well, He's all-powerful, all-loving and never changing! He will never let us down.

Holly said...

Jen,

I have been following your blog for so long, but I have never posted any comment before. Please know that my family and I have been praying for Wesleigh, you, your family, and all orphans around the world. God will protect her and your family even more than ever before.
19 years ago I was at age 18 when the doctor told me I would never be able to have any kids because I had servere endometriosis. I went against my doctor's advise of having a comple hysterectomy. I was in college and passed out several times in class. I dropped out of school, did 3 IVF cycles, and finally God blessed me with a beautiful set of twin girls. I was even more surprise when I got pregnant again naturally when the twins were 3 years old. I was thinking about adoption a lot of time when things were hectic, and I didn't know what to do. God has continued to provide everything that I need and I am sure He will do the same for you. I now have three beautiful daughters under the age of 7. I am now back to school to finish my premed degree.
I am from Vietnam and moved to the United States when I was diagnosed. I saw a lot of kids died on the street because they didn't have food nor medical care. I am very thankful to all families in the States and around the world for pouring their hearts for international adoptions. Thank you very much from a bottom of my heart for being WJ's mom, and loving and providing her with a beautiful family. I know WJ will be very happy and sucessful because she now has you and Him, the powerful loving Father.

Holly Nguyen

Shannon Sauceman said...

Will be praying for little Miss Wesleigh. What a cutie!!

Beth said...

But she does....a wonderful loving family!! And that is what will give her strength in the future. And she is the same little cuties she was yesterday and the day before.

snekcip said...

Oh where do I begin! First and foremost. God has His hands in this beautiful story. Those are words of man, God has the final say and He alone has woven Wesleigh's perfect tapestry in this life! Thank you God for your awesome work on this child's lifestory. We praise You, we thank you for all that You have done and will continue to do!

Secondly, this has got to be some of the BEST pics of Ms W by far! I truly love the shot of her dad and her. Truly beautiful!

Debbie said...

I'm so sorry that you got news you did not expect!!! Jeremiah 29:11 says it best as God knows the plans for both you and Wesleigh. It will all turn out okay because God chose you to be her parents and her to be your daughter. Love the outfit!!! Where did the tank top come from??

Anonymous said...

What a true blessing Wesleigh has been in just a short period of time. I can't wait to see the beautiful young lady she will turn into. No physical problem can overcome her sweet, joyful spirit. We have God's promise that He will never leave or forsake us and we can count on His presence as we walk through life. Our Father loves our little girl more than we can and has her right where she needs to be. Our prayers are with all of you. I am anxious to see how God works in this situation. God is good.... all the time!!!

Love,
Pawpaw

Sammons said...

She is certainly already a little miracle! God, our Great Physician, oh how he loves to show doctors and tests who's in control. He has made her perfect and she is undoubtedly just that! I know she will continue to blow the minds of all who watch her grow and thank you Lord for bringing her to the family that was meant to be hers all along!

Sunny said...

That sweet angel is a part of your family for a reason. I think you are a great mom and you know best how to love and care for her. Also, loving her hair! I may have to copy this look, too!

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