Another Quick Update!

Grace is no longer crawling to get places, and.....SHE WENT POTTY IN THE BIG GIRL POTTY FOR THE FIRST TIME!!! WOW!! Good job Grace!

We canceled all her appointments accept her MRI since she's been doing so well. Definitely growing cognitively! She's starting to run too!

Amanda

Just a Quick Update

So, we're moving now! Actually, we started yesterday. Signed the papers, handed over the money, and at 2:30 pm we got the call..."You are now proud owners of a beautiful house!" Oh yeah! So we got a small trailer, 24 foot, and loaded that baby up twice! I unpacked as Brad and Kailyn were loading it a second time, so except for the food storage that was brought over, all the boxes from the first load have already been unpacked, put away, and the boxes broken down! Oh yeah! We had some family over to help, and Kailyn had some friends, so that made it even faster. Brad already took another load this morning from storage, so now, we're getting there! All that's left in the apartment and garage are the big things: our mattress, crib, chest of drawers, bookshelf, tv/desk/computer, and then in the garage there's the washer/dryer, 2 freezers, fridge and piano. That was FAST!

Tonight, around 2, we'll get the 26 foot truck, and Kailyn's 2 friends as well as 2 missionaries are coming over to help load up at the storage, which will hopefully all fit in one truck. Then off to Rex by 5:30, where there should be a bunch of people waiting to help unload from church as well as two or more family members. It's amazingly fast when you have a lot of people there to help you.

We've only had one mishap so far. Brad knocked over a 5 gallon tub of sugar...oops. So we'll have to replace that, but that's it so far!

Ok, time to take Grace to a friend that's going to watch her so I can bring the rest of the furniture out to the living room and deep clean!

BYE!

Amanda

Grace's PT Today!

WOW, I can't believe how well Grace has done in such a short amount of time! Today during PT she was definitely showing off for us, and I absolutely LOVED it! SHe finally did the "stink bug stand" like she's supposed to! This is shown in the videos below! I was so proud of her, and I think the best of the best was when she bent down, grabbed her toy while in squat position, and got back up to standing without much effort at all! Great job Grace!! In one of the videos, the first one I think, we are talking about a compression vest, which might help her feel more secure, thus helping her slow down as she's walking about. She just goes so FAST, and she's wobbly, unbalanced, and not really paying attention to her surroundings, so maybe the compression vest will help.
She was being a stinker in the above photo. I thought she was going to bend down without holding on, but alas, she held on.
Here she's on a roll walking and talking on her cell phone. Already a chatty Cathy!














This bottom video is the cutest!!! She's trying SO hard to run!! She gets going pretty fast, huh?


Amanda

Spina Bifida Clinic and Ronald McDonald

We stayed at the Ronald McDonald house, and it was such an awesome experience. While we were there, I asked about a "Bored Bag" for Grace, which is what they give out for the little ones. Well, the picture below shows the goodies. It was AMAZING how much stuff they put in there!! I couldn't believe it! They also had a full kitchen there, and cupboards PACKED full of anything you could think of. Then, there's volunteers that come daily to cook dinner, so that was nice too.

They also give out a gift on your first stay when you are checking out. It's a pillow and quilt made by a mommy of a little boy named Benjamin. He found out in '97 that he had cancer, had stayed in this exact house, and by Thanksgiving of '98, he had passed away. But while he was receiving treatments, he'd asked his mom to make little pillows and quilts for his friends, so they'll be happy. And to carry on his legacy, his mom still makes the pillows and quilts, but it's gotten bigger because she asks others to help out as well. That way, everyone will feel special because of the cute pillow and quilt!



I felt so blessed to be able to stay at the house and benefit from it's love within. And I'm so glad there's somewhere like that for people to go when their little ones are sick and can't be home.

Amanda

Spina Bifida Clinic

Well, we are home from the clinic. We stayed at the Ronald McDonald house, and that was such a humbling experience. Seeing all the pictures of the children that stayed in the home, and then seeing the sick children walking around the Primary Children's Hospital...it was hard to keep my emotions in check. Especially since I've got a friend who's young daughter passed away from Leukemia almost a year ago. Lots of choking back I had to do. Anyways...

Here's what gonna happen:

Grace is getting an MRI in December to update on her scoliosis and syrinx in her spine. At the clinic she got a renal ultrasound on her kidneys and they looked perfect.

Grace will also be getting a pressure test on her bladder with dye input to make sure she doesn't have neurogenic bladder as well. This will also show if the kidneys are being damaged, which we didn't see so probably not.

Grace will be getting SMO's... Here's a picture below... Since she can't stand without support, and she walks with her feet pointing out, and has a slight roll to her feet (this is all normal with spina bifida AS WELL AS her gene deletion), the SMO's will help stabilize her ankles, give support, and teach her how to balance better so hopefully she can stand without support.

Today we talked with Neurosurgery, Neurology, Urology, PT, OT, Genetics, and...I think that's it. PT said she's doing great, and that children like Grace would put PT out of business!! He was just so ecstatic with how well she's doing. OT has given us a list of supplies to buy since she's so far behind developmentally...darn...no colors, animals, or writing other than vertical lines and scribbling. Here's whats on our wish list for her:

The chenille stems. These we will use to work on stringing beads. The beads are below.. These are what we start with because they are more firm than just a piece of string.
Since Grace is SO sensory tactile, the OT said to do AS MUCH sensory AS POSSIBLE. Shaving cream, whipped cream, finger paint, pudding, jello, etc. Allow her that as much as she wants to do in hopes that it will decrease her need to smear her meals all over her.
Chunky puzzles. Aren't as difficult to maneuver as the puzzles we have for her with the tiny handles, and they are simple shapes. We are to only use circle, square and triangle, and then move on when she's mastered that.
These are the Melissa and Doug beads we have to start her stringing with the chenille stems. This will help with hand eye coordination, fine motor, and it's a common milestone she should have already reached.
Stacking is HUGE all throughout this age and children are tested up to the age of 5 on stacking. And since she just HATES having things stacked in front of her, these were given as an activity to buy since they connect as they are stacked, so that they won't fall off as easily if she were to push them over. Also, we are to teach her that if she wants to knock them down, then she has to push a truck into them. Gives her following direction ability, hand eye again, and hopefully will make her less likely to knock them down.

Another chunky puzzle without knobs. This one is a bit more advanced, but it's another one we could get to help her with holding larger objects in her hands.


All in all, a trip completed. I'm exhausted, so we've put Grace to bed and am watching hulu till we get too tired to keep our eyes open! The house offer we counter offered after they counter offered us went through, so we go to Rexburg tomorrow to do the walk-through with the inspector, then hopefully by the middle of next week it will close, and we'll move in by next Weekend!!

Amanda

Dr. Appointments for Grace and our hectic schedule!

Wow. Today's been a day. Finding out about the house, finally doing the offer thing, and then having to come home and schedule a ton of appointments for Grace was too much for me! I cried! It is just exhausting making all these appointments, wishing she didn't need them, and then getting turned down for multiple appoints per day. Anyways, here's the schedule. It's kinda crazy.

Be sure to remember this is ALL in Utah!

November Friday 11th: Spina Bifida Clinic 8 am

• neurology
  
• urology

December 1st: Shriners Hospital for orthopedics at 8 am. Then 1:15 bladder pressure testing and 3 pm appt with Urology

December 5-8th:
5th: Nuerosurgery at 9:30
6th: MRI 12 pm
7th: Genetics 9:30
8th: Orthopedics 4:20 pm

I told you it was crazy. Luckily, we can stay at the Ronald McDonald house for the 11th one so we aren't getting up at 4 am to drive down there. Same with the 1st, and then the 5th-8th. That's a blessing for sure! The MRI is finally for her spine, and all hopes that everything is fine.

So, add that to everything else going on! We are never stopping! Our Elder Hildreth comes home December 16th, which, conveniently, is our anniversary, but the house is my gift so that's ok. Plus, I'd rather see him home safely than go somewhere else. Party with family some time after he comes home, Kailyn finishes school the 22nd, then we high tail it to CA for family time there!! Then I start school Jan 4th!!! Woo Whoo!! And Grace starts going to preschool then too! As well as all her other stuff...PT 2x week, OT 1x week, Speech 3x week, equine 1x week, and possibly swimming therapy 1x week. I'll be going to school MWF, from 10:15-3:45, so I still get to see Grace every morning, and I won't be home too late. I'm taking 7 classes, 4 online, 3 in class. Shew! Then I will be going to Mommy group for special needs children, and possibly starting a special needs music group too!

Remember, fingers crossed that the bank accepts without issue. And that would have been nice if it was by tonight, but tomorrow is fine too!

FINGERS CROSSED!!!


Amanda

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