Sunday, September 27, 2009

1000 divided by 2

Yup, if you did the math correct, you're right, this is post #500! That's amazing, I can't believe we've written that much. When we first started this blog it was way before Mia and we had a hard time writing 1 post some months, but now life is definitely all about Mia, ok, not all about Mia, but quite a bit, so it's a bit easier to write posts now that we have a great reason. And after she was born, we re-purposed this blog to be all about her, but more importantly, all about God, how He is merciful, gracious, and powerful (to name just a few). We've seen God's mercies new every morning, and we continue to be in awe of His power, we serve an awesome God! So, we just wanted to take a moment to reflect and say, Praise God! Thank you Lord! We are looking forward to the next 500 posts and the way that He will continue to transform our lives!

Galations 2:20, "I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me."

Thursday, September 24, 2009

Speech Therapy

Speech Therapy went so well today! I was so excited at Mia's progress. Last Sunday she would occassionally mouth mama, without the voice to go along with it, well at therapy they got her consistantly doing it today! They were just playing with her and bubbles and the therapist kept saying "pop pop pop" and Mia started opening and closing her mouth and then trying to do "pop pop pop" herself, it looks like "mama" too, so that was exciting. Please continue to pray for more progress like that!

And it's official, we've moved into the "new" class at school, the teacher also agrees that it fits Mia better, and I think it will work out great. Today Mia was sorting blue, green, and red pieces into blue, green, and red containers. She actually did pretty well with it, I was pleased.

Tuesday, September 22, 2009

LA

So we were off to LA today to see Mia's intestinal surgeon and everything looked great. We are now at a size 10, so we are about 1/2 way there, our goal is a size 13...so, we should be done in about 2 more months, since we are taking it real easy.

After we got home, Mia wanted to crawl up on the couch with her kitty, CindyCat...but she still can't quite do it, so I gave her a little push and she did get up there...one of these days though she'll get it and then we'll have to be super careful until she learns how to get down.


CindyCat, I'm gonna get you!


Oh, I so desperately want the CindyCat!


Thanks for the push Mama!


I love my CindyCat!


Nice Cindy!
Cindy, I'm giving you a kiss!


Hey, where do you think you are going???


Mama! Did you see how my CindyCat just left me!


I got this climbing thing going, why not...see my leg...I'm ready!


I guess Mom should jump in and save her before disaster strikes.

Monday, September 21, 2009


I love this picture, even if it is horribly centered, I just barely got her in it! Isn't she a cutie!

Today we started Mia's new class at school. It does seem to be a better fit for her, so I think we will be staying there, but I wanted to see what the teacher in the class thought after Thursday, if she agreed or not. It was a bit less structured than our other class, and so that was different for me, it will just take a bit of getting used to and getting to know new people. :)

This afternoon we went to our first speech therapy appointment and that went really well. It was mostly just playing with the therapist, so Mia could get to know her and get used to being around her. What struck me the most though, was that there was a lot of repetition of phrases. They would play with a certain toy and she would repeat the same phrases, like 3 times, over and over again. She said that after awhile, kids pick up on this and naturally start producing those same words/phrases. So, we'll see what happens. We have noticed Mia using her mouth more, like she wants to say something, but nothing comes out, so please continue to pray for her in that area.

Wearing the glasses is going great, for the most part she keeps them on, usually when she sees her reflection in something (like the fireplace or dishwasher), she will try to remove them, but otherwise they stay on. I noticed her trying to take them off the other day and I said, "Mia No.", in my strong firm parent voice (I have no clue when I developed that...hehehehe), and she fussed a bit and looked at me, but kept them on. So, she definitely understands!! Praise God!

Oh, and sleeping with her hip brace, she actually sleeps better with it than without! For the last several nights, she's been making it all the way to the morning, it is so awesome. I think it's because she can't get on her knees, it forces her to stay lying down and so then she eventually falls back asleep when she wakes up. I told Brad that we've found the secret to getting your kids to sleep through the night and if we have any more kids, we'll put them in the brace if we have to! Probably not, but it is kind of humorous to us that this is what it took to get her to sleep through the night. Praise God for uninterrupted sleep!

Thursday, September 17, 2009

More Therapy

So, Mia got evaluated for speech therapy today and we are now signed up to go twice a week. Today there wasn't a lot of therapy, just mostly talking about Mia's history and assessing the need, which we know she needs, next week the real work begins. It will probably be fun, her speech therapist seems like a very nice gal and she already seems to get along well with Mia and it's only been 1 day, so I'm encouraged and hopeful that we'll begin to make some more progress in that area. Please pray for that! Please continue to pray for more leg strength also as that will be what eventually gets us to walking.

Next week we are starting our new class at school, it will be a trial run for a week, just to see if it fits Mia's needs better, but I have a feeling that it will. So pray that we would transition easily (for Mommy and Mia) to a new teacher. We've only had 1 teacher our whole time there and we LOVE her, so change can be hard, but we are excited to get to know a new teacher and are sure that she'll be just as great as our Miss Carmen. :)

Hip brace wearing is going really well, she has been sleeping pretty much through the entire night with it, she will occasionally wake up around 4-5ish, but today she made it until close to 7, so praise God for that progress! We have a few more months before our next check up and I'm hoping her ball and socket will be just where they are supposed to be and that we won't have to do this anymore...I can always hope and of course pray, right?!

As always, thanks for praying!!!

Tuesday, September 15, 2009

Every Girl Needs A Horse Of Her Own, Right?


Some dear friends of ours were trying to find a home for their rocking horse, apparently the kids who used it had grown out of it and there wasn't much space, so they asked us if we'd like to house their horse and of course we said yes, because every girl needs a horse of her own, right? Anyway, the horse is beautiful, one of their family members hand crafted it themself! Amazing! So, Mia has been enjoying her new rocking horse, little by little she gets more and more used to it. Today when I put her on it, she tried to get it to rock herself. :) Here's a picture of both darlings!

Monday, September 14, 2009

Holland

I've been preparing to share about Mia at Bakersfield Christian High School in October. As a result, I've found myself going through old emails that were sent out by our dear friends, the Norsworthy's, during those first few weeks. In one of those was a beautiful piece that my sister-in-law Rachel found about a woman named Emily Kingsley who had a child with Down Syndrome. Let me share this with you.

WELCOME TO HOLLAND

by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


Just this morning I was thinking about how I've been blessed in such a different way than other Mommys. Many mommys don't realize exactly what it entails to go from crawling to walking, it's quite a process. I would have never known these tiny intricacies of development if we hadn't landed in Holland...like that you first pull to stand and get down by falling on your bottom, but then learn to get down using one knee. I've been able to find so much joy in Mia's progress with these tiny details. Some days are still hard, I would be lying to you if I said I never wanted to be in Italy, but I'm learning to appreciate Holland. More so, I think most days I love being in Holland, in all of its differentness, it is truly beautiful.

Sunday, September 13, 2009

Black and Blue

Yup, you guessed it, Mia had her first major bump today. Nothing compared to heart surgery, but something we would rather of not had happen. The side of her face landed on our tile floor and she's got a black and blue mark between her eye and her ear. Not fun. It doesn't appear to hurt in the least though, she was more unhappy with me trying to put some ice on it so it wouldn't swell up.

Wearing the glasses is going fairly well. Does she keep them on? Yes, for the most part. Usually if she rubs her eyes and notices that they are there then she'll want to pull them off, but otherwise she just does her thing with glasses on. We think she looks very smart in them!

A week or so ago, her Grandma Cheri got Mia this Elmo piano book where it has a keyboard that goes along with some songs on each page. I wasn't paying super close attention to how it worked, but the other day I noticed that she was playing a song on the keyboard, Mary Had A Little Lamb, I was in shock! Not only do we have a potential chess star, but a piano star too! Then I realized that there were red lights on the keyboard that lit up to tell you which key to push, so I thought ok, she's getting some help, but still, she's pushing exactly the right keys and not missing one at all...I thought, she's still got tons of genius potential there...then I played with it and realized that the only keys that work are the ones lit up, you can press all the other keys all you want and they won't make a sound...ok, so she's normal. Hey, but normal is good! :)

This week is fairly routine with school and physical therapy. Thursday we are getting evaluated by a speech therapist. Please keep praying for wisdom on how to help Mia learn to produce sounds, I so know that she can if the Lord is willing. Help us to be patient.

Friday, September 11, 2009

Glasses and more!



We just got back from getting Mia's glasses, yay, they finally arrived! As soon as the gal put them on Mia she got real still and looked at herself in the mirror, she probably could finally see clearly! She hasn't fussed a bit, probably because she can see! We'll see how things go over the next few days.

We also got our flu shot this morning and hasn't appeared to have had any reactions to it. Since this is her first flu shot ever she has to get another dose in a month. :( But after that, she should only need 1 a year.

Last night at Back To School Night, there was some talk about moving Mia to a higher functioning class even though she isn't walking yet (they don't usually get moved before they start walking...), anyway, that was exciting to think that she might need to be challenged more in a different class. So, nothing definite has been decided, I think we are going to wait until her speech evaluation next week and then make a decision.

Hope you have a blessed weekend!!!

Future Chess Star???



In case you are wondering, those are pieces of grilled cheese sandwich, one of our favorites, we call them "cheese balls". She would much rather play with them then eat them, but I love how she so deliberately moves them around the table!

Thursday, September 10, 2009

Tomorrow, Tomorrow...

Things have been low key at our home these days because both Mia and I have been under the weather, we just have a slight cold that doesn't seem to want to go away. And I'm sure part of it is allergies too! I think Mia is completely on the mend as of today, maybe tomorrow for me??? I hope. As a result, we played hooky from school today, it was kind of nice because it seems like we are always on the go, sometimes we just need a breather. I think that's why God tells us to take that one day of rest.

It looks like tomorrow Mia will get her glasses! Yippee Skippy!! As Daddy would say...this is assuming they got them done and overnighted them back in time, we will see, but I am hoping that tomorrow is the big day. Tomorrow I am also taking Mia in to get a flu shot. So pray that everything goes smoothly there and there are no adverse reactions.

Speech therapy, what a long drawn out process, but I am getting smarter! So, I had heard really good things about a place in town that does speech therapy and wanted to see about getting Mia evaluated there. I called and the gal told me, "I just want you to know that we aren't an "in-network" provider, so you might have to pay more to see us." My heart dropped, bummer. Because we've experienced not using an in-network provider and have decided to never do it unless we have to. So, I got on the phone and called our insurance and asked them who is a speech therapist we can go to??? They tell me to go online and look myself, are you kidding me??? Ok, so I amuse myself and do this, and search within a 50 mile radius of our zip code and guess what, there are no in-network providers! Well, that's exciting to me because that means we can go to an out-of-network provider and they treat them like an in-network provider. At least that's what they told me. Well, I call insurance again, just to make sure that I haven't missed something because I want to be absolutely certain. Yup, there are none in Bakersfield, the closest one is in Visalia. So, now we have to file some paperwork and we have to do this every 90 days that we continue therapy. Bureaucracy. And then she tells me, "oh, and even though we don't have an in-network provider, you will get charged less than using an out-of-network, but you still could get charged some." So, we'll see what happens after our first statement shows up, but if she needs it, then we are going to do it. So, next week Thursday we get evaluated and then we'll go from there. Pray that the therapist would have insight and wisdom into Mia's situation.

I have a cute video of Mia eating her favorite "grilled cheese balls" and as soon as Brad shows me how to put it on here we'll get that done!

Thanks for continuing to pray! God is great all the time!!!

Tuesday, September 08, 2009

Mia has been doing really well, she is adjusting to her hip brace and she actually made it through the night for the first time in a long time. Hopefully we will hear about her glasses soon, in the mean time we are doing school and therapy like usual. We will be seeing a speech therapist soon, you can pray that she would develop her voice.

Today for the first time at lunch and dinner Mia used two signs to tell me "more food". That was exciting to see her communicate with me. And she initiated it all on her own, praise God!

Saturday, September 05, 2009

No Glasses

So yesterday we were scheduled to pick up Mia's glasses and head to LA for a helmet fitting, but when we went to get her glasses they were the wrong frame! It was a total error on the part of the company who made them, so they are going to rerush the order for next week Wednesday, so maybe by then we will have some glasses. In the mean time we didn't feel the need to go to LA and that made us very happy!

Thursday, September 03, 2009


Yesterday we went to LA to see the craniofacial clinic at UCLA. Even though we've decided to stick with Children's Hospital LA and their plastic surgeon for any future skull surgeries for Mia (which we aren't planning at the moment), we still thought it might be wise to continue to be seen by UCLA because the craniofacial clinic is more than just the skull surgeon, it's also alot of different doctors assessing areas of the head, like dentists and ear, nose, throat doctors...it also includes the genetics team, so anyway, we were there yesterday. We didn't learn too much new information and were hoping to get some answers concerning Mia's snoring at night (yup, she snores), but it looks like we will have to make a separate appointment to assess that. The one good thing that came out of our visit is we got a prescription for Mia to be evaluated by a speech pathologist here in town and for her to then possibly start speech therapy. She still isn't talking and only makes a few soft sounds occassionally, but she does continue to learn more signs and so we keep working on those with her.

Tomorrow we go back to LA because she gets her glasses tomorrow and we are going to get her helmet fitted for them. And then hopefully we won't have to go back for awhile! Three times in one week is too much.

Today at school they are doing a unit on "All About Me" and so they have these cute, creative activities for the kids to do, well, today was making a foot and a hand print. Mia just thought it was so silly that they were painting her hand red and her foot blue, she giggle when they painted her foot because it tickled. It was really cute. I'm excited to compare the prints to the prints taken when she was born because I forget how little she was sometimes.

Mia is making more and more progress with leg strength. At therapy we work on walking behind a machine that we push. She isn't strapped in to anything, she just hangs on the handles and pushes it around. She's come a long way in the past few months, so keep on praying for more strength and balance and I know we will get to walking one of these days!

Tuesday, September 01, 2009

LA

Today we went to LA and saw Mia's intestinal surgeon. Her bottom is looking great and so we have now moved up to a size 9. We will be at a size 9 for two weeks and then we will be back again to see how she is doing. Remember that our goal is around a size 13, so we probably have another couple of months of stretching to go. Tomorrow we go back to LA again for another doctor visit, just a check up with the craniofacial team, and then we have another possible appointment on Friday...it's a busy week for us, the good news is after this week we won't have to be back until her next intestinal visit, that makes us excited! We would much rather drive to fun places like San Francisco then to LA. :) Enjoy the pictures below from our trip, and by the way, Brad is doing great recovering! Thank you Lord and thank you all for praying!
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