Update on a House.

Well, after much searching, talking, wondering, more searching, discussing, and even more searching, we have FINALLY not only found a house, but HOLY COW put an OFFER on it!!! SHEW!!!
This is it. We put an offer on it today, and it's a bank owned. So, if things go our way...PLEASE PLEASE PLEASE, then we can move in by the end of the month. 5 bed, 3 bath, 3000+ square feet, finished basement, 2 garage, fenced and complete backyard (which we'll fill w/ a garden), and a food storage room! I also like how the door is pushed back a bit, so when I decorate for holidays, it can be packed with decorations!
Above is our pretty backyard! The brown spot in the corner is just a patch of wood chips, so that's where half of the garden will go.
Look at that AWESOME entrance!!! I just LOVE IT!! I don't really know why, I just do!
Check out the master bath!! Awesome huh? Brad will love the tub!! The closet is right to the right of the shower, and it's a walk in closet about the size of the bathroom, which is about the size of...maybe 12x12.
The back door has the bench built in I've always wanted!! You can open that and put shoes in there, so now Grace will have no way of walking around with shoes on her hands! Hooks up top for jackets. And this door goes to the garage, not the backyard.
Laundry room with sink and room for an ironing board.
Living room! Beautiful!! TV will hang on the wall to the right of the fireplace, with the piano to the right of that, and to the left of the window will be Brad's great aunts (I think that's who it belonged to) cupboard for china...or whatever else. Above the fireplace will be a beautiful picture of the Temple!
Kitchen..oh la la! No fridge or oven, and the other things are black so we MIGHT buy black. Or just use our white fridge and by whatever for the stove. We don't know for sure that this is the forever house. Wherever my teaching credentials take us, as well as availability of services for Grace once she gets into school. Lovely wood flooring!!!
I love the island!!! I think I just like everything about this house!

Grace room is right across from ours, and her play/homeschool room will be to the right of her room. So she won't have to go down to the basement for her toys, which is convenient. Then 2 more rooms downstairs (Ryan and Kailyn). Ryan's is the size of two large bedrooms combined, so if we resell we will probably put a wall in the middle of his room, another door and a closet, and call it a 6 bed house. Seriously, you could put a shuffleboard in his room, and you could still live comfortably in it! Or a full sized pool table and his stuff!! WOW. Kailyn's room is like a queen's room for sure. She's got a large bedroom (could fit a cal king and still be comfortable), a HUGE walk in closet, and then a nook the size of the walk in closet with a window! Once she moves out that will become a sewing room.

The family room is quite big, so the TV might go down there (that's where Brad wants it) but then there won't be any furniture to watch it with!

The food storage room doesn't have shelving or anything, so I'll probably see if Brad could construct water storage shelves as well as food storage. The water storage shelves will store 55 gallon drums at a horizontal angle with a slight incline in the rear, and a spout on each one. And there's also an area under the stairs that I can take the door off and Grace can have a little secret nook for whatever she desires!

SO...fingers crossed, as is everything else, and I am trying to have low expectations. Our plan? Have the bank tell us tomorrow they accepted our offer, have an inspector come in Thursday and give us the report by Friday, if the report is fine we will close next week Monday or Tuesday. If there's problems, then I don't really know. Hopefully the inspection comes back with no issues. Fingers crossed!


Amanda

Grace Walking!

I finally took a short enough video that I could upload it to her blog!! Enjoy!




Amanda

Shopping with Grace

Well, if you've ever wondered what it's like to shop with Grace, then you've got your answer!

Shopping with Grace is like shopping with a super sticky legged octopus!

I don't know how she does it, but she somehow finds a way to touch about EVERYTHING we walk by! Stinker! I went to the Seagull Books store (which I LOVE) with her, and I think the only way I could have been safe there was if I tied her arms down to her sides! She wanted to touch everything, all around her, no matter what. Some of the things, like the stuffed animals, I let her touch, but definitely not the whole display of "17 Miracles" or the super expensive paper paged books! She was crazy in there! Fussing, whining, arching when she didn't get her way. But I still enjoyed going with her because it's so spiritual in there that there's no way I can't enjoy it with her! That baptism aisle is one of my favorites, along with the Young Womens and Duty to God aisles!

After this, we went to another book store that sells super cheap used books. She LOVES the kid section because they have these adult looking chairs, so she'll see where the chairs are and ditch me, get up into the chair, and grab the nearest book. I was able to look at the homeschooling books without issue because she was over being my big little girl checking out the books all on her own! And then when we were ready to leave, she realized I was carrying my purse, so she cut me off so she could grab my purse! That was so cute watching her carry my purse all around!! But it got heavy quick for her, so she dropped as we walked!

Later, when we'd gone to the mall, we went to the clothing section, which is definitely the WORST place you could take her :) It was so cute though, that I don't even mind! I think every display that had the clothes stacked and nicely folded had one poor pile dropped onto the floor! She would yank out of our hands because she knew if we were holding her hand, she couldn't touch anything! So she'd yank, waddle away, and then dump something on the floor! But I was just so excited about her walking that I didn't even care :) It'll probably catch up with me later though.


All in all, not so fun to shop with her. The best place? Walmart. Why? THE CART!!! He he he!!!

Amanda

SNOW!

WOW, it's started snowing! Last night it started, so we took Grace out to check it out. She was less than thrilled...actually, she was scared. But we'll work her into it. Daddy took her out a second time to check it out again, and he showed her how to open her mouth to catch the flakes. Well, they both opened their mouths successfully, but instead of Brad getting cold snowflakes in his mouth, he got a cold Grace hand!!! YUCK!

Since it was snowing and Grace and I had been stuck in the house the whole day and she had 2 hours till bedtime, we all headed to the mall. They have a play area that Grace likes to play in, so we would wander a bit, then go play. Then wander some more and then play again. SHe had fun, we had fun, and by the time we left, it was bedtime! Score!

It's funny. Grace got a gift from her friend "Grandma" Angie, and it's the leapfrog A-Z song player. You put the plastic letter in the spot you're supposed to (the whole learning toy is magnetized on the fridge) and it will sing for you. Anyways, as I'm sitting her writing this blog, Grace will bring me a letter, (It's supposed to be E) and if it's not E, I tell her, "go get E" and she will walk back to the fridge and grab another, and then all the way back to me with an M, or a B, and back and forth. She's doing so well with walking! And now I just glanced down at her and she'd grabbed the pillow off the couch, laid it on the floor and was curled up laying on the pillow snoring for pretend (it sounds like she's clearing her throat and then says "shew" as her snore :) I'll have to catch it on tape sometime! She also loves to say "I love you," but her way of saying it is... "I wuuuuv ooooo!" And when it's time to go to bed she says... "ni ni?" I say, "Yes, Grace, it's night night time." And she will go walk to the bathroom for "teet?" brushing her teeth, and will way and say loud and clear "BYE! WUUUUUV OOOOO!" It's so stinkin' cute!

Hm..what else?? She knows how to open the front door! Well, not get it actually open, but she pulls the lever to where it's not in the wall anymore, and she can peek outside. Whenever we are going to leave, I tell her, "Grace, we are going out. Let's go out. Go to the door." And she gets SO excited, stops whatever she's doing, and either crawls to the door or gets herself up with support and walks to the door. Then she'll stand there at the door knocking on it or wiggling the handle while she says, "out out out." She's doing great with her words!

Amanda

Something on my Mind

When Grace was evaluated by a PT at Camp Hippo, his evaluation stated that he could tell she had scoliosis. But when we'd had her MRI done quite a few months ago, it was just an extremely slight curve, one that was barely detectable in an MRI. And now, just months have gone by and it's obvious enough that the PT can see it while she walks. I've tried over and over to try and feel her spine on her back, but I'm just not really sure how hard to push, and I definitely don't want to hurt her! SO my worry is that we've waited too long for another MRI, and that it's gotten a lot worse in a short amount of time. It wasn't really something that we had to worry about back then, but then we lost our insurance and couldn't have her MRI that same month like we were supposed too, and then it's gone on this long. I think what I'm worried about the most is the repercussions of scoliosis. It's bad enough that two parts of her brain that have to do with balance are smaller than they should be, but then for her to have scoliosis? He has also noticed how she steps higher with one leg than the other, and he's wondering if that's showing the scoliosis.

I don't know. I think, with everything else going on, that I'm just really worried about that little girl. Loving, no jobs, new home and new STATE for pete's sake! And new doctors that don't know a thing about her gene deletion! They'd never heard of it before. I mean, I can't hold it against them, it is rare, but still. At least act like you've heard of it...sheesh! I guess honesty before masking the truth, right?

That's not really it on my mind. Remember back when she had her spine surgery in April 2010. Remember what happened because of the surgery...she got the syrinx growing in her spine. The pocket of fluid, remember? Well, the last two MRI's she'd ever had showed an increase. It was amazing, at this point, to have to tell the technician that "yes, there IS an increase in size." She was just SO set on there not being a problem, but once I forced her to look again, that's when she actually saw the increase. Sometimes moms should just be the doctors! What could happen if the syrinx keeps growing, or, if it gets too big? Grace could lose her legs. Lose all mobility because the syrinx would press against the sides of her spine, irritating it, and could cut off whatever nerves she's got left headed to her legs. I'm also assuming it could effect her bowels/bladder in some way as well, seeing how the neurogenic bowel is already in place. I've done some reading up on these syrinx, and their testy things. It continues to grow because the fluid within the syrinx, (the syrinx is actually a cyst) continues to move, which pushes the sides out more and more. One of the conditions to watch for is a loss of feeling hot and cold in the hands and feet, which of course Grace has. Her feet can be ice cold and she won't even whimper. She's also got the gait that is improper, as well as ataxia. I just don't know what these doctors in Utah are thinking! We took her to Primary Childrens and the doctor said, "Well, we need to see you for a "first appt", and then we meet with you again to see if she needs an MRI." Are you freaking crazy?!! Of course she needs an MRI!! How many times do I have to say that MRI's were being taken EVERY 6 months to monitor the growth of the syrinx??? If it gets too big, it's going to damage my child, and it's going to damage her Independence, and let me say it will damage that Doctors reputation for sure!! I'll make sure of it. What doctor isn't going to be concerned with Grace's extensive background?! A shunt might need to be put in, which means another surgery. I'm definitely not looking forward to that, especially since I'm in a new state with no real support group close to me. The closest is 2 hours away...and they've got their own families, lives and things.

Now, this isn't Grace's back, but that's the idea anyways. See the white blob? It shouldn't be there. At all. Uh...deep breath. Sometimes a dose of normalcy would be nice.

Amanda

Grace Walking Up the Stairs, and Then Back Down.

Oct 13, 2011



Can you believe she can really do it? If I'd have given her more time, I know she would have gone higher, but someone was coming and we had to move. WOW!!


Amanda

Playing at the Park

Oct 13, 2011

Grace just loves going to the park, so why not go and work on some walking?






I love it when I get to see her walk. Isn't it just amazing?!!

Amanda

Walking Around

Oct 15, 2011

Grace is just always so super busy! Here's some pictures of her walking around, showing off to the world. When she's wearing her sweater is when we're at the Farmer's Market getting some yummy fruits and veggies to take home!

She can actually climb up these stairs by herself, but for whatever reason I can't upload the video so you'll have to just trust me!


And then of course we have to have a goofy one of Grace!! Cheesy face at snack time!



Happy Days!

Amanda

Grace's Airmail from Special People!

Sept 2, 2011

A super special friend sent Grace a super special gift on her super special day!!! Happy Birthday Grace from Keri and Jonathan!!!

Can you see the two she's holding? I am so glad I got this picture, so that now I always know it's for her 2 yr old birthday!

She was so excited to see the bright pink label on the box, and when I told her who it was from she lit up SO MUCH!!! I LOVED watching her pull everything out. I had to unwrap everything, and her favorite thing by far was the balloon!

Another set of special friends sent something else too!! Dado and Papa!! They sent her such a cute baby doll that cries, drinks her bottle, laughs and blinks it's eyes. Their friend made a hat and slippers for the baby, which Grace LOVES to take from the baby and try to wear herself! Doesn't happen though!


Aww, feeding the baby. She LOVES feeding the baby, and also sharing it's "milk" with herself!
I asked her to put the hat on the baby, so she tried and tried...finally...

She put the hat on the baby!

And then her silly morning look...patch and all :)

Then the last special friend is "Grandma" Angie!!! Keri's mom sent Grace a couple gifts too!! Shoes, a hard page book, and a soft book! She was SO excited to see the gifts!! She of course put her hands right into the shoes and walked them across the floor...silly girl!



Thank you all that sent airmail. It is enjoyed daily, and love the memories they bring us!


Amanda

Going Swimming

Sept 1, 2011

Here's Grace's pictures in her super cute two piece! I just LOVE this outfit, but am sad that she's probably not going to fit into it by next swimming time!!!


How stinkin' cute, right??? I thought so too!! And she just enjoyed swimming every day SO much!!

Amanda

We're Alive! I promise!

So, yes, I know it's been almost a month since my last post, but I swear I have good reason. First of all, we're all alive and well, and no, we haven't frozen in the cold...yet. I would love to just post for hours and hours...right now, but I can't you see? Grace has therapy in 2 hours, so for that two hours, she has to be entertained. So that's me! And after therapy we leave to head to Rexburg to see our house that we're putting an offer on, and then to go walk the BYU campus that I'll be starting at in January. And after that? I don't know what's going on after that! But probably something that won't let me post. Here's a recap of things that have been going on...

• Grace's speech therapist recommended 2-3x of speech therapy a week once we move to Rexburg
• We move to Rexburg THIS MONTH!!!
• We get out of this horribly tiny apartment!!! I get to have SPACE!!!
• Grace has had two hearing tests in the past week...each saying she passes...which means her speech delay and communication...I mean lack of comm, isn't because of hearing loss, but because of her brain malformations.
  
• Grace will be getting AFO's for her ankles so she can FINALLY stand up on her own w/o leaning on something, or holding onto someone.
• We go to the Spina Bifida Clinic in Salt Lake next Friday for an all around checkup, and that's when an MRI of her spine will be ordered FINALLY
• Her scoliosis has gotten worse...Her PT can tell just from watching her walk.
• Her head is 17 inches around...still below 0% for her growth. 0% for her weight which is 22 pounds, and her height is 31 inches, giving us a 0% for her height. She's pretty much stopped growing. Her last measurements were...at 22 months she was 22 pounds and 32 inches, so she lost an inch on her height.
• I got a serger from a friend :) She gave it to me because she couldn't use it any more (poor eyesight) and we had talked about how I was going to buy one. (WHAT A SWEET FRIEND!!)
• I can't wait to move to a new ward. After more than 2 months I still have no callings, Grace has no play dates or friends, and I only know 2 women from the ward.
• Grace said PUSH yesterday during therapy!!! It was actually PSH, but who cares!
• It hasn't started snowing yet..thank goodness.
• I'm still keeping up with Institute, though sometimes I'd rather sleep in.
• I can't wait to start sewing, cooking, canning, and preserving again. And don't forget dehydrating.
• I finished my first cross stitching project, and am already starting my second one!
• Grace can pretty much walk non stop until she falls down or loses her balance, and then she'll crawl. I tried uploading video forever but it is too big. It's on my Facebook though.
• Grace is getting so much better at her sounds. She can make the vowel sounds, and we are working on consonants.
• Grace can count 1,2,3 but doesn't necessarily know what they mean yet.

I can't really think of anything else. I wish I had hours and hours to blog, but now she's done eating breakfast, on the floor now, and that means fingers always trying to tap the keyboard along with me.

Until...until I have some free "Amanda" time...

Amanda

Grace's Physical Therapy Evaluation

Observations/behavior:
She did not seem to process/follow any specific motor commands except for to "walk". Overall muscle tone appears to be decreased with normal to hyper-flexibility of peripheral joints and appears to have some milk L thoracolumbar scoliosis.

Most of his evaluation is in PT talk so I REALLY can't understand it, but I'll write the jest of what it's saying...

Recommendations:
Recommend skilled PT intervention to address deficits in strength, balance and gross motor function.

This is also certified as a chronic condition needing 6 months or more of skilled therapeutic intervention.

Amanda

Grace's Speech Therapy Evaluation

09/21/2011

We had Grace evaluated at Camp Hippo, which is where she goes on Wednesdays from 8-11 for PT, OT, and speech therapy. This evaluation is from her speech therapist, Michelle.

Language:
Auditory Comprehension has an age-equivalency of 8 months.
Expressive Communication has an age-equivalency of 1 year 1 month.
Total Language Score resulted in an age-equivalency of 10 months.

Grace could:

• shake/bang objects in play
• actively search for source of sound when source is not visible
• look at objects or people the caregiver calls attention to
• understand a specific word or phrase for family members, pets, objects or social routines
• use more than one object in play
• demonstrate appropriate use of objects in play such as a ball, and identify body parts on self.

Grace could not:

• complete age appropriate tasks such as anticipate what will happen next
• respond to no-no
• follow routines or familiar directions with cues
• identify familiar objects from a group of objects
• understand inhibitory words
• understand verbs in context
• understand spatial concepts
• understand pronouns such as me, my, and your.

Expressively, Grace was able to:

• babble two syllables
• demonstrate a vocabulary of at least one word
• extend toys or point to objects to show others
• use 5-10 words.

Grace was not observed to:

• produce a variety of consonant sounds
• initiate a turn-taking game or social routine
• imitate words
• produce different types of consonant-vowel combination
  
• babble short syllable strings with inflection similar to adult speech
• name objects in photographs
• use more words than gestures to communicate
• ask questions.

Oral motor:

• demonstrated decreased lingual and labial tone, causing drooling, inefficient feeding skills, and decreased speech intelligibility.
• does not have appropriate labial seal, causing difficulty drinking from a straw and loss of food from the mouth during chewing and swallowing.
  
• Due to decreased lingual tone and strength, Grace has difficulty forming a cohesive bolus, causing residue to be left in oral cavity.
  
• Difficulty moving food from side to side of mouth
• Munches food with front teeth rather than molars.
• Decreased feeding efficiency and speech intelligibility.
  

Pragmatics:
During a structured activity with her peers, Grace was observed to require maximal physical and verbal cues to refrain from over-engaging peers, turn-taking, and initiating/maintaining eye contact with peers. Services would be most appropriate in a natural environment where peer-to-peer opportunities are provided. Grace's pragmatic skills are not within normal limits and are a concern at this time.

Recommendations:
Results indicate an auditory comprehension/receptive delay of 1 year 4 months, and an expressive language delay of 1 year. Based on results Grace should participate in speech therapy once weekly for 60 minutes...

This is certified as a chronic condition that necessitates 6 months or more of skilled therapeutic intervention.

Shew...that's it for speech. Basically, she should have been getting speech that whole time in CA.

Amanda

Grace Talking, walking, and MORE!

Grace is doing so much better at walking! The picture below shows her climbing the stairs by herself! Yep, I said it!! She can do side stepping climbing on the stairs. My baby girl isn't a baby anymore!! And we are still patching, which is why her eye is covered.

Below is Grace at the park. It's a special needs park, so that's pretty sweet! Her dad helped her get onto the hippo of course.

And I just love getting pictures in motion of little Grace!!! Isn't this awesome?!!
And I absolutely LOVE this face picture of her while she's walking!!! Mouth open, arms balancing her. Just adorable!
And we are experiencing the feelings of fall. I loved the smell of the drying leaves, and she had a blast kicking them!!
That's so sad that I can't upload these videos either. I guess they're too big, and so they never load, it just keeps sitting there. Dangit. But at least we have the pictures. I haven't taken any pictures of her at her three hour therapy session yet, mainly because I forget to take the camera! But I'm really hoping I'll remember this week. I'd love to show off what she does!!
Here's Grace trying on a super cute hat from Bear World!! I just LOVE IT!!
And our first snow of the season. It came and went in a matter of a couple days. It was SO fun, but Grace HATES the snow, so now we have something to work on with OT.
And this is just a super cute picture of Grace having snack!! The milk...it's soymilk. We've found out once and for all that she is DEFINITELY allergic to cows milk. She gets a bazillion spots all over her body that itch like crazy, and she gets HORRIBLE diaper rash. Poor thing. You'd think with all the milk I drank while pregnant, she would have come out with spots like a cow!

Oh well, such is life.

I love you Grace!!

Amanda

My Walking and Talking Girl!!

10/13
Once again, Grace amazes me with her walking and talking. With just one 1 hour session with her in home physical therapist, Grace now knows how to get up to standing from sitting, by herself, without support!! WOW! We now have a fully mobile daughter!! Does she still choose to crawl. Yeah. But does she get up when we ask her too? Heck yeah!! Woo Whoo! You're doing great Grace. Once again, pictures and videos are the only thing that can do justice, but alas, the internet connection is too slow in our apartment...so we'll have to wait till I can get to the library, which might be Saturday at the earliest.

Amanda

Bear World

Sept 8, 2011

We went to Bear World and had a blast! Grace loved all the animals, and her sissy got to feed baby bears, so I pretty much think it was a great trip! I'll let the enormous array of pictures do the talking!

Grace enjoyed trying on the different hats with Daddy, and I enjoyed snapping the pictures!!!
Grace got to ride a bear!!! No, I'm just kidding. She looks scared, doesn't she? Yeah, she kinda was, but one I showed her how soft the FAKE bear was, she was happy.
Watching the baby bears play when we first got there. They were so cute!
Grace really liked this white elk, but as you can see, it wasn't very fond of us. It walked right down the middle of the water the entire time so we just couldn't really reach!
Oh the pig...do you see how I'm doing hand over hand with Grace? Yeah, the pig scared her!! But I didn't want her to not try, so once I helped her, she had a new problem...she didn't like how it felt!
This deer was so sweet to Grace, until of course it figured out we didn't have any food. And then it took off from us so fast to go find the next hand that might have some food!
Grace loved this baby deer! She really wanted to stick her hand through to pet it and let it lick her, but we didn't let her since they wanted the baby to stop licking everyone!
By this point Grace was VERY tired. She'd not had a nap at all, and this is in the afternoon when we were visiting the baby bears!
There was a scavenger hunt, like an easter egg hunt, and among other little treats, Grace found 2 PUMPKINS! They had treats inside, and she won a small bear, which is on the counter, and 1/4 lb of fudge! Good job Grace!!!

All in all, a wonderful day. I loved watching Grace's face as she saw all the animals, and it totally made it worth it. She also went on a roller coaster.

She was REALLY not sure about the roller coaster. She pretty much white knuckled it the whole way, but she was a trooper!

Amanda

Snow Day!!

10/6
Well, I can't believe I can say we had a snow day!! Grace's first snow day EVER! I mean, she's gone to the snow to play, but we've never lived in it. So of course I was so happy for Grace to have her first snow day ever!!! And she was so excited as well!! Of course I loved seeing her all bundled up in her jacket, thermals, and all the other get up! But it didn't last long. 2 days or so and it melted away to sunny days once again. But it will be back :)

Pictures later.

Amanda

Here we Are

Well, obviously I've been WAY too busy to update about Grace. Life gets hectic and when there actually is time to post, it's way past midnight and time to go to bed so I can do it all over again.

Yesterday we went to Bear World. It's absolutely PACKED with bears, wolves, deer, elk, and all sorts of other animals.

Hm...Grace is done eating, and even if she wasn't, there's a TON of updates to do, and a double TON of pictures to put up. So I'll have to wait till some day in the future when Brad watches Grace for a few hours so I can just do this and not worry about her.

Amanda