For Your Viewing PLeasure

Like most of you who have already received your referral, I'm sure you remember where you were and what you were doing when the phone call came in about your beautiful child to be. I was one week post-op from a two level cervical neck fusion, in a neck brace and The Count was at work. I was trying to relax on my couch between phone calls from my anxious husband while my children were doing school work. When the first report of referrals hit the AWAA SN Yahoo Group I was done for. I was pretty relaxed most of the day up until that point. I remember Liz had a May LID and she received her phone call an 1 1/2 before ours and announced Mei Mei's referral arrival. At 3:22pm on October 5, 2007 we learned about Chu Meng now officially our daughter.

As I sat and learned of her medical condition I could feel my stomach knot and my mind/heart race. I was told she had an arachnoid brain cyst. I thought to myself "what the heck is that, I didn't check that off on our medical list." I knew of the process of how our agency worked. They looked at your LID, how long you'd been on the SN list, your medical check list, and most important they pray over each child's file. I was then told of the reason our family was chosen. I must say I was very quite the whole time just trying to absorb everything that was coming at me. How was I going to tell my husband our child has a brain cyst?

I called The Count at work and he hurried home so we could all review her file and look at her sweet face. That night I looked up her condition on the internet and found probably every scary website I could on arachnoid brain cysts. I must say I was pretty discouraged when I went to bed that night. The next morning I was able to talk to our local doctor and then over the LONG weekend a neurosurgeon at Boston's Children's Hospital. What we heard was very reassuring. After much prayer we knew that this was our Twink. We knew that there could be risks but also knew we served a big God. This verse came to mind MANY times throughout our processes of the unknown.

"Trust in the Lord with all your heart and lean not unto your own understanding. In all your ways acknowledge Him and He shall direct your paths." Proverbs 3: 5-6

On November 15th we received a brief update letting us know that she was still not walking but we were not worried. We were prepared for her not to walk until she had surgery. What a surprise it was to see her walking on our Metcha Day. We went to China with no expectations and we were blessed beyond belief for just trusting the Lord!

“Surely God is my salvation; I will trust and not be afraid. The LORD, the LORD, is my strength and my song; he has become my salvation." With joy you will draw water from the wells of salvation. In that day you will say: "Give thanks to the LORD, call on his name; make known among the nations what he has done, and proclaim that his name is exalted. Sing to the LORD, for he has done glorious things; let this be known to all the world. Shout aloud and sing for joy, people of Zion, for great is the Holy One of Israel among you." Isaiah 12:2-6

Now today we all know that Twink does not have an arachnoid cyst but has had a stroke. She is wonderful and we are so blessed to have her in our lives. It feels as though she has been with us much longer than 10 months. These were the pictures we saw one year ago today in the very order you see them. Enjoy! Oh and I hope you liked the video!

AWAA Associates

Well I was going to wait until Sunday to share this exciting news but The Count and I received an e-mail from AWAA (our adoption agency) asking us to be Associates! We are so excited. What this would mean is that we would hold a couple adoption seminars a year and possible a monthly/bi-monthly fellowship meeting. I still remember the first seminar we attended, it was one day after we found out our LID. The second seminar we attended a year later was awesome as well. I really like our local Associates and was excited to show them Twink's picture last November at the SCC concert.

What a gift from the Lord to be able to share information on adoption! To possibly bring more children to their forever family - only the Lord can do that but we can help.

Oh and there IS more sharing to come on Sunday! ;)

Improving Everyday!

It's been awhile since I've given any updates on how well Twink is doing so I thought I'd take a moment and share some things Twink is doing. It seems positive peer pressure is working to our benefit! :) Since school has start she is trying to do so much more in so many different areas. Twink is now able to walk up and down the stairs holding on to a railing or the wall (she used to crawl up and scoot down on her bum). She is feeding herself most meals with a fork or spoon, she is working on holding her own sippy cup (she still prefers to use it like a bottle), she can use a straw, she waves, she starting walk holding hands and when you ask for her hand she hold out her hand that the stroke left week. I'm not sure if school is working with her on that but that is the one she always gives me.

Are you wondering about the sensory issues? Well......we are getting there! LOL She does not like the thought of getting in the tub but once in there she is fine. She will play and laugh until it is time to wash her hair. She hates that with a passion. She is better about me washing her little body! :) She does not cry anymore and will stand up for me. She also does not mind having lotion put on. She likes to rub it in except on her arm that the stroke affected. It must feel different. She does still hate to have her teeth brushed. We are working on it. As far as brushing the hair, it's getting better. She lets me put a clip in or one pony but not two. If it's two then it's a fight!

As far as speech, this is where we get frustrated at times. She is very good at getting her point across but some times it is hard not knowing what she is thinking. Right now she says uh-oh, ding-dong (belly button), uh-m (for no), up, cracker, meow and hi. A couple of these words you have to ask her to say and she'll say them but we hear the rest a lot. She has said the following during speech therapy or early on - mama, dada, goat, tree, hello, kitty, boat, and car. Now I'm sure I missed a few but this gives you an idea of what she has been working on. (I can also look back for future reference) Some of those words have come out clear as day, some not so clear. Car comes out like she should be in Boston! ;) We do not live in Boston. LOL She is using more signs to communicate. She is doing very well with them too. I think we are going to work with her a bit more with it. I must say Twink understands EVERYTHING we say to her. I get rather frustrated when people imply that maybe she does not. Our daughter follows directions better then our 4yr old daughter! Just because she can not talk does not mean she does not understand. I think this is going to be my biggest struggle until she can talk. Trying to get people to understand that she does understands!

We have hit a turning point with her recently. She has started to just blossom. She is loving, playful and her tantrums have lessened. She loves the children SOOOOO much and really looks forward to them coming home from school. The first thing Spitfire usually asks when she gets off the bus is if Twink is home and if she is still awake. :) She will usually then tell me that she loves Twink so much. It just melts my heart.

I know this is getting long and I will stop for now but I wanted to share what our baby girl is doing. I know I usually post about all her medical stuff and it can get overwhelming but I wanted to just tell you all the good going on. We thank God everyday for her. She is ours thanks to Him! :) Oh check back this weekend we have some thing exciting to share! :)

**Edited to add that Twink is trying very hard to jump. It is sweet to see. She likes to dance. I'll try to catch that on video because it is really sweet. Oh and did I tell you this child can eat! She eats everything and anything. She LOVES food. I actually have to cut her off because she can eat more than I can. Ok no more for now!

More Info

For those of you with questions about submucous cleft palates you can find you answers on this site and here is a picture of what one looks like. Note this is not Twink's mouth. Twink's looks longer and thinner but you really can not look for very long without her closing her mouth. So I hope this answer those questions I've been getting. :)

Submucous Cleft Palate

OK, our speech therapist just left and now I'm sitting here in a daze. When she first started seeing Twink she had told me that it was possible that Twink had a submucous cleft palate. She told me that there would be no know way of knowing until Twink started talking more. If she tried to do an oral exam on her she would freak out so we didn't push it.

Well today Twink was playing with me and she opened her mouth wide enough for her to do an exam. She did see what she believes is a submucous cleft palate. So she is sending a referral to the cranio-facial team and I'm sure we'll have an appointment scheduled within a week or two. I know they are a busy office and I hope we don't have an appointment until November or December! LOL Never a dull moment and you can usually count us in for a medical appointment. :)

Running SOOOO Slow!

OK this is driving me CRAZY! I seem to be only having trouble with my blog and no one else. Thank you Liz for the comment and the e-mail! LOL Your right no music here. I wish it were that easy. Does anyone else have any other ideas why MY blog would be running slow/sticking and then be fine? I have some awesome things to share throughout the week and do not want this mess to interfere. Please help me if you can! :)

Prayers for a Friend Please

My childhood friend son is having some testing done in Boston the next couple of days. Please check out their story at My Italian Darlings and keep them in your thoughts and prayers. They are a strong family but are dealing with so much right now. Her sons name is Zach. Also their daughter just sprained her arm so just remember the family as a whole. Thank blogging buddies.

P.S. Is my site running slow to all of you or is it just on my end?