The love Gracyn has for Addi is apparent, but it's been hard to do this post because my heart has been heavy. I have spent so many nights praying for Gracyn, praying for me, praying for our family. This weekend God answered my prayers. Gracyn and I had an amazing day. Gracyn has not had an amazing last few months. On the attachment front we're still working through some challenges. She's attached to me, no doubt, but it's still not the healthy attachment I know she should have. If I give her a lot of affection, she wants more. I know this sounds weird, but after cuddling for a period of time, it escalates to needing me to touch her face, her hands, her feet, and then when it's time to move on to something else, she often times breaks down. For a while I've had to more or less monitor the amount of affection "input" if you will to teach her some balance. It can be overwhelming for me.
On the sleep front, Gracyn still has a really hard time adjusting from sleep state to awake state. She's doing better moving from the car seat to the house if she dozes off, but if awoken before she's ready, watch out! I know a cranky sleepy toddler, but this is still borderline "catatonic confusion". Crying spells can sometimes go on for upwards of a half hour.
On the learning front she has definitely made progress. She's starting to recognize two syllables instead of shortening everything to one. Her approximations of words are becoming more recognizable. She's now in the school system and receives physical therapy, occupational therapy, and speech therapy. Speech is the biggest area of concern. That said, here goes the hard stuff. . .
Due to the circumstances in which Gracyn came to us, our Pediatrician (a Mom to two daughters born in China) recommended we get Gracyn's DNA tested. We took her in for her blood draws and it was gut wrenching. I had to hold her down for fifteen minutes. Her first vein collapsed so they had to bandage that up and start again. She HATES the bandages more than the needles. they needed at least six or seven viles of blood, and her blood kept clotting off. It was a nightmare. That said, I think waiting for the results might be worse. We're testing for chromosomal abnormalities. Our Pediatrician is specifically checking for Fragile X. It had never crossed my mind before, but after reading about it, I found myself nodding my head over and over again as I went down the list of symptoms. Doesn't mean she has it, could purely be a coincidence or a combination of her SPD (Sensory Processing Disorder), post-traumatic stress, and developmental delays.
In addition to the DNA testing, we've been trying to get an MRI and CT Scan done. Unfortunately Gracyn keeps getting sick the day before and they won't sedate her unless she's healthy. Why the MRI and CT? When I bathed Gracyn for the first time in Taiwan, I noticed the shape of her head was abnormal. It was thought that she just had "flat-head" from sleeping on one side too much. My maternal instincts have always told me there was more to it. The neurologist asked one simple question: "Does she have trouble swallowing?" Yes, doctor she does. In fact while she can chew and swallow steak without a problem, she's always choking on liquid. Because of the swallowing issues and the speech delays, the doctor felt it was worth doing the MRI and CT because there could be something impacting the part of her brain that controls her oral motor skills. Remember the comment about spitting from above? I think that applies here too.
Whew. . .that was a long post. If you had time to read all of it, know that I spent the time sharing because you are my support system, I trust you, and I am asking for your prayers.
Now, here's those pictures I promised of my beautiful girls!!








16 comments:
THANKS so much for sharing this post! I NEEDED to hear alot of this :) BIg hugs to you and your whole family! I will be anxious to hear about how the testing all goes and am praying. Noah had some testing done in MAY at the charity hospital (though we have insurance it is the ONLY place here with a geneticis) we STILL have NOT had the results nor do we know which fragile X tests were done. I am FRUSTRATED. Anyway, praying you get your results soon! Waiting is horrible! LOVE the pics of your GIRLS! I bet you LOVE saying that :) I can't wait to Jeremiah is home or even close to home and I can say BOYS
hugs
Tami
Ug. Oh, mama. Yes, you do have a lot on your heart right now. Thinking of you and your beautiful girls.
I wanted to email you privately but didn't know your email address. hmmm. Bailey had genetic testing also and was shown to be a carrier. Her MRI was normal. I'd be interested in the results of her testing. I hope you get some answers. It's hard and I can't express enough how I know what you're going through. I could go on and on but a lot of it is something I'd rather not be on a public blog. Whatever happens, you have 2 beautiful little girls. :)
Holli
Know that Gracyn is loved by all of us; from her time in Taiwan until know, she holds a place in all of our hearts. Our prayers are with you.
What beautiful pictures you post - I love them all...thank you for sharing -
First, let me say that I loved the photos, esp. the ones of the girls on the grass together. Secondly, thank you for sharing what's been heavy on your heart. It certainly sounds like you've been carrying quite a load there. I commend you for taking your cares to the Father, who knows and loves Gracyn thoroughly. Know that we're also praying and hoping for the best along with you.
Of course I made it all the way thru your post. Hope you get the results back soon from all the tests. You are in my thoughts and prayers.
Love the pictures of the girls!
Sandy
Beautiful girls. I have thought a lot about Gracyn since you posted that Addi was on the way. I've been curious about the adjustment and am so glad to hear that she is doing well. On the other hand, I'm so sorry that you've had so much other stuff on your heart as well. You know that you have my prayers. I love that you have asked.
Be blessed,
Courtney
Oh, so much for one Mama to carry with her in the day to day....the abundant joy of Addi, the day to day adjustments of having 3 on board now :) ......creating special time for each one, yourself and hubby....remembering your lovely Mom....healing from birth....recording & sharing your reflections and the gorgeous photos of your family with us all............gosh,
and then you do it with such amazing strength, grace, humility, honesty and always always with tremendous respect and LOVE!! Of course you have our prayers.....you always do!!
Tiff, Gracyn is an incredible little girl and I truly believe that her gifts to the world will be as big as her HUGE heart and radiant smile....maybe bigger. They may be unfolding more slowly due to her difficult past, but like a flower, she too is blooming.....and it takes my breath away! Should it come to pass that she faces additional hurdles, please know that we stand with you and her.....
Though it may not have been your intent, thank you for reminding us all to embrace each day. I hope the coming tests are not too difficult for sweet G and I pray the outcome is positive....either way I know she will be fine as she holds the love and has the support of your beautiful family, always!!
The photos....gorgeous!
BIG HUGS!!
P.S. I hope you are able to somehow find some time for yourself in there too.....Mama often is last I know, but still I can hope!! :)
P.S.S. Someday I promise I'm only going to leave a short story, as opposed to my usual novel! ;)
Tiff,
These are just precious...I dream of being able to capture such touching photos. Maybe Addi is just what Gracyn might have needed. What better way for a little girl to connect or reconnect with her own needs, than by expressing her love and instincts through caring and nurturing those of her baby sister. (?)
I'm sorry that you've been holding all of this inside and have had to go through this during such an adjustment period all of your own. Being the mother of 3 "littles" under the age of 4 can be insane enough, just by itself! LOL... You truly are a trooper!!!
I'm sorry that Gracyn had such a horrible experience with her tiny veins collapsing and blood clotting, and now with being sick and having to wait for yet the MRI.
Waiting for results has got to be the worst... When I can get it together, I would like to email you privately.
Please know that you are in my thoughts,in my heart and in my prayers. ((Hugs!))
I love the pictures of your girls. They are so beautiful.
My heart was saddened by what you are going through. This should be such a joyful time for your family. I do understand how difficult this testing is for you. We went through evaluations and testing for autism in our oldest when we had a new baby at home too. You and your family are in my thoughts and prayers. Try and be good to yourself during this stressful time.
Praying for you, Gracyn, and the doctors. She is So gorgeous in those pictures. God knit her together and He knows what she is facing. He is not surprised by any of this and He already has a plan for her, which included You being there to find the best ways to help her!
Such beautiful pictures of your girls. There's nothing like having a sister, such a gift for them to have each other. I'm so sorry for what you are going through with Gracyn. My heart just breaks for you. You are a strong Mama who will get through this no matter what the outcome may be. I'm keeping you all close in my prayers. Love you Tiff.
Ok, Breathe in, breathe out. You've let it out and now just breathe. know that you and your family are loved and you are such a special loving mother. I know the "neurological" route you are on, in a different sense, but none the less, definitely something that makes you appreciate every small progess. Milana has the "chore" habit, which we are breaking her of slowly by giving her moderation. Milana also has a very flat back of her head... may effect all kinds of things. Milana also couldn't swallow ANYTHING when she came to us unless it was super mushy or through a straw and she still sputters. Milana also just adores babies...just finds them everywhere we go and runs up to them. Of course they are two different little special beings... just wanted to let you know, I hear you. I send my prayers, hugs, love, support and a big old bowl of ice cream and brownies if they wouldn't melt. Just keep plugging away... the rewards come when things are the hardest. Love ya, Sara
God bless you all, especially sweet Gracyn. I pray that all is well and/or very fixable for her. She is a gift!
I'm probably wrong, but your face looks familiar and I noticed the date of your Gotcha Day is so close to ours...Were you possibly at Immigration at the San Francisco Airport on 9/5/08?
Hey, I'm kinda proud of myself for recognizing you, even though we've never met and I only saw you for a few minutes! So cool to have found you! All of your kids are adorable! Yes, Lilli is aboriginal. Her birth mother is Puyuma, her birth father is Ami. We adopted from The Home of God's Love in Luodong. Where do you live? We are in the Portland, OR area. I'll be reading more of your blog too!
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