Activities and the Zoo Part 2

05/21/12

Ok, part 2 of the fun day at the zoo!!

I just can't believe we had so much fun, and I'm so excited that it wasn't only us, but with my mom as well!  What a wonderful part of her journal!

 She really liked the pig, can't you tell.  Even though all he did was lay there, for some reason she was really tickled to see him!

 It was so hot that all the animals pretty much stood around not doing much.  But Grace still enjoyed walking around and making the noises of the ones she knows.

 The YAK!!!  He was like a zombie...didn't move at all!  And I think she's giggling at Daddy!

 This was super fun for her!  She got such a kick out of feeding the goats.

 Look at her...no fear!  She went right in there and let them eat out of her fingers.  I'll bet it's because from early on our dog licks her fingers or she sticks her hand in his mouth, so she's used to animal mouths!

 Now Me Ma is helping.  She didn't want to help but take pictures, but I wasn't taking no for an answer!  Not at all!!  Me Ma has a lot of fun things to do with Grace, and to do for her, and so she's definitely going to do it!

 Daddy and Grace loved going inside and petting the goats!  And there was an extra special activity they got to do!!!  And that was...

 SEE A NEWBORN GOAT!!!  Oh my goodness what a great experience!

 Another pet of the goats while Me Ma fed them, and then we were done with the goats.

 Watching the lion/lioness.  Grace LOVED these, and kept meowing at them, and then when I told her it was a big kitty, she growled really loud over and over.

 Grace got to walk by herself, which is a huge thing for me to do because I'm a stickler about her holding my hand all the time, wherever we are.  But I gave her some space, gave her some independence, and I think she liked it.  And Me Ma thought it was cute too!!

 Checking out the black bear!  He was the only animal really on the move, over and over so fast that she'd just get a glimpse.

Shew...at this point she was hot, tired and definitely DONE with animals!!!

End of Part 2!

Amanda

Activites and the Zoo Part 1

This will be a 5 part blog post because there are just so many pictures, and so many different activities, that I want to post them all separate so we don't get stressed from tons of pictures in one blog.

05/21/12

So, first off, random pictures, either of the morning, or of therapy.  This wasn't a good therapy day because Grace was pretty emotional from not having a nap (we went to the zoo).  These picture sets are backwards (because the zoo was before therapy), but for photo number sake, I'm going to just leave it how it is so it's not as confusing to load the pictures.

Look how cute they are together!  Grace busy brushing her teeth, and Me Ma loving on her every second she gets.  It was so darn cute!!

This was the first part of her therapy, and not only did Me Ma not like it very well, but Grace broke down when Rose, the therapist, accidentally pushed a little too hard on her thumb.  Darnit.  She is wrapping Grace's feet so that they don't fall off and she doesn't pull them off.  We are still trying to get her to learn how to push the pedals, but it's pretty hard for her to understand, so she just gets a little help.  After the therapist squooshed her thumb, that was pretty much it for positive atmosphere bikeriding :)

 Grace at therapy, and for this one, she's actually happy.  This didn't last very long, because of something that happened right after this.

 This is where it all went wrong, and screwed up the rest of her PT session.  They were swinging and all was going great because she absolutely LOVES the swing and watching herself swing, but then one of the black straps came unhooked behind the therapist, jerked the swing, and Grace went CRAZY!  Almost throw up crazy.

 After a while, I calmed her down by swinging with her, but the rest of the PT session, and her Speech session were still rocky.

 Here we are at the zoo!!!  These monkies were so nice to Grace, and came right up to her at the window...see below!

 See!!  It was so sweet to her and came and visited!!

 These little monkies were so adorable!  I just wanted to steal one in my pocket and take it home!

 See how cute?!  Wouldn't you just want to steal one too?

 Another monkey coming up to the window wanting to say hi.

 Isn't this the most beautiful picture?  Daddy daughter checking out the ginormous turtles that barely lifted their heads up!

 Grace was absolutely scared of this egg, but after some trickery with the wood chips, she stayed long enough for me to get a picture.  I also got in with her, which was pretty darn cute!!

 She didn't like the nest at all!!  But I quickly snapped a picture before she screamed to get out.

Checkin' out the awesome pig!!!  Isn't this beautiful how she's just laying her head there checking out the pig.

That's it for part 1!

Amanda

Reading With Me Ma and the New Desk is IN!

05/20/12

Grace got to spend some reading time with Me Ma while Daddy brought the new homemade desk in, and Mommy was the heavyweight that had to sit on top of the desk while he secured the bottom to the top.

 This is where I was the heavyweight holding down the top part.  Can you believe that this was completely homemade by Grandpa H and Daddy?!  This is so beautiful woodwork.

 Grace and MeMa reading together.  Me Ma absolutely LOVED being here and visiting with Grace!

 Grace is being so super cute in this picture.  Mommy was in the background and I think I was trying to dance with her or something...maybe chasing her?!

 Daddy daughter picture!!!  Aren't they so cute together?!

 Here is the desk, almost finished.  The doors for the top have to be put on, and then after that it's done.

Me Ma and Grace sitting downstairs reading some more.  It was easier to watch Grace if she wasn't upstairs because she was always right under foot wanting to help, but we just wanted to get it DONE!!  Thank you though Grace.  When you are older, you can help all you want.

Amanda

Haircuts with Me Ma

05/19/12

The first thing we did the day after my mom got here was give hair cuts!!  Brad's was just horrible, with the hair around his ears no longer around them, but laying about 2 inches over them!  Thankfully my mom was with us to help shape the hair around the ears, otherwise they might not have any ears at all!  Lots of pictures are coming, so I hope you are all ready!!

 Grace and I.  For once I look decent!!!  And isn't Grace the cutest?  We tell her, "Show us your teeth" in order for her to actually smile!

 She was done with her snack and brought it over to me asking for more.

 Being a super big girl and brushing her own hair.  Isn't that a massive amount of hair or what?

 Brother Ryan getting a hair cut.  Grace did so well not going and playing in the hair, but I think that's because she was seriously afraid of the loud noise of the clippers!

 ALL DONE!

 And Brad's hair is done, but getting styled.  I need to get onto him to style his hair every day!  It's better this way then being flat every day.

 Daddy daughter...that's her protector!  This was like...the 5th shot!  She would either blink, look away, or stare off into space :)

 Super cute, right?!

 And I had to show a real smile with some happiness inside of it, rather than the one on top that's more of "model" shot.

Grace and Mommy having a mommy daughter glance of love.  She's still super into sensory activities, which is why the brush is in her mouth.

Amanda

A Bike Ride

05/17/12

Grace and I absolutely LOVE going on bike rides, and of course Daddy does to, and what's so special?  He gets to pull Grace!!!

 Little miss Grace is so excited!  Luckily she's waiting patiently, usually she starts shaking the trailer so the bike will fall over!

Hi Little Grace!!  Isn't she ADORABLE?!

Amanda

Grace's pre-IEP Meeting, Sun oven Dinner, and Another nap on the Floor!

05/16/12

So this is the big day that I was waiting for.  Her pre-IEP meeting.  It wasn't nearly as much as I was worried about.  They wanted to know Grace's strengths, what syndromes/diagnoses she has, how she behaves at school/home/with other people, and wanted to know my concerns/what I hope to see.  They also asked about what her future would be like because of the gene deletion and it being so rare, but I couldn't tell them for sure so I just let them know with everything combined she will probably be needing help throughout her whole life.  And they said that I know so much, am so involved with her life, and am such a strong advocate for her that they were absolutely amazed, and said that I will need to join their team!  Wow, job offer in not so few words!  I'll have to keep up with that offer as I go through school, and maybe when Grace is in school I can teach in her class!

 Here's our outfits...Grace didn't actually make it to the meeting in this outfit because she went to school and got SOAKED at the water table, so she ended up wearing clothes that were kinda old and didn't quite fit anymore!

 Here's dinner in the sun oven...Sweet and sour chicken!!

 And this is how I found Grace quite a few times with her toddler bed side on.  She exhausts herself playing with toys, and then I come in once she's asleep and put her back in her bed.

Silly girl!!!  

Amanda

Fun Park Day

Today I want to start eating better and working out, of course slowly at first.  My goal?  To be able to run a 5k in August!  I would love to be able to push Grace in a 5k, do well, and feel absolutely wonderful in the process!  but anyways, we walk/jogged one mile to the park we love to play in, Grace and Daddy were at the little swings while I went super high on the big swings!  Oh that felt wonderful to have the wind blowing against me as I hit 0 gravity and feel like I'm flying.  Grace absolutely LOVED watching me swing too!  Then she and Daddy came to the big swings, where I pushed them for a while and then got too cold to want to swing anymore.  We walked to another park, which was the park where they have the free meals Mon-Fri.  We played there for a couple minutes, Grace went down two slides, one which had 2 turns in it!  But her nose was running pretty bad and I realized once I put her in the bike trailer that she was shivering like crazy.  So home we came, and now she's playing her piano while I update!  Below are pictures of the first park we went to.  They are both right next to each other.

The one above is the main park, but the swings aren't showing.  They are to the right of everything.

The picture above is the spray park that we have yet to go to.  It needs to be a bit warmer before we go there!

Good day so far!  Nap time soon so Mommy can do some homework, and then who knows what the rest of the day will hold for us!

Amanda

Out With the Old, in With the New!

Once again, I've changed Grace's heading :)  I just love coming up with new sayings!  So...here's the old one...

...and here's the new one!!

Isn't she just the most cutest girl in the world?!!!

Amanda

NECAP Testing

We were given the opportunity to have some testing done on Grace to see where she is all around on her development.  The scores were not what I was thinking, but I'm learning to be a realist when it comes to her development, and see that it's at her speed, not mine.

Here's the scores:

It will be the area, and then the developmental age

Social  20.5 months

Self Help  15 m

Gross Motor  16 m

Fine Motor  19 m

Expressive Language 18 m

Language comprehension  18 m

Numbers 18 m

General development 19 m

Situation Comprehension  13m

She's 33 months old.

Amanda

A Good Day

Today has been pretty nice.  Though the weather has been a bit colder, that's been fine with me!  Toddler school went great, and I believe that's because there were only 9 kids, including Grace.  See, I told you the smaller the group the better she does!  Then we went to DI to waste some time, didn't buy anything (FOR REAL?!) and then over to the park for the free lunch.  She did great eating because I didn't give her a snack.  I wanted to be sure she ate well.  And she sure did too!  3/4 of her pepperoni pizza, 1/2 her brownie, 1/2 her chocolate milk, and all that was left were her canned peaches and bread stick!  After eating all that she went to play, played with a little boy WITHOUT getting pushed down, came back for bites and sips here and there, and just had a great time!  We swung on the swing together, and I lust loved seeing her feet and legs kick super high up in the air, with her giggles and screams ringing out as we went higher and higher!  Off to home, and now it's naptime.  The only eventful thing was when she got both her legs stuck between the rungs of her bed and couldn't get out!  A bit of crying for that, which exhausted her the rest of the way!

What's going on the rest of the day?  Finger painting in just a diaper, her teacher coming over between 4:30-4:45 to discuss how Grace is doing in Toddler Class, and then off to the farmer's market!!  YES!

Amanda

EQUINE THERAPY!!!

What an awesome announcement!!!  If all goes well, we will be starting horseback riding therapy next week!!!  AH!!!  I'm so excited!  Her PT said she'd hold a spot for her on Tuesday morning, so I still have to get a hold of her to see what time, where and for how long, etc.  I'm SUPER excited!  Also, her doctor better fill out the paperwork ASAP because I have to have it turned in before Tuesday, and he isn't back into the office until Monday.  And I heard there's transportation available, but do you REALLY think I'm going to sit around and let someone else take my child?!  NO WAY!  I'm going to be there every time to root her on!  5 weeks once a week.

Amanda

Oh a Day

It was just a normal day after the whole pushing incident today.  Played outside, made a meal in the sun oven, played with the hose outside, went shopping to waste time, had dinner, and then little miss went to bed :)  Not much more I can say to that.

I do have some fun things to report!

I've been wondering what I'm going to do with Grace as sort of a community activity as she gets older, and here's the list I've come up with:

1. Girl Scouts (daisy groups starts at Kindergarten 'age 6 for her.')
2. 4H
3. Special Olympics (starts at age 5 and she won't get picked on there because every single child there is accepting and knows that everyone else is special)
4. Gymnastics (age 3)
5. Ballet (age 5)
6. Swimming Lessons (age 5)
7. Horseback riding lessons (age 5)
8. Soccer (age 8 because it's second grade, which for her she is going to be a year behind because of her age, so she won't play until she's 8).
9. T-ball (age 6...again with the birthday being 1 day after deadline so she goes to school a year late)
10. Tae Kwon Do (if this pushing keeps up, she'll be starting at age 5)
11. Kinder-Ready Camp (age 5.5)

Some of these are multiples for ages because we will choose between them depending on what she wants to do.  Also, some of the ages seem a bit old for her, but that's because I don't think she's going to be developmentally ready or understanding if we start any younger.

Well, that's what I'm looking forward to :)  Also Faith in God with her and Young Womens Personal Progress, but that's a bit far in the future.

Amanda

Park Play

For the most part, we had fun at the parks "free meal" activity.  Grace didn't want to eat much of her beef enchilada, apple, milk or berry ice pop, but would rather go play.  The playground was full of tiny rocks, which Grace just LOVED feeling, pushing her hands through, and rubbing between her hands.  That's pretty much all she did, but sometimes she'd stop and watch the kids play.  It was so sweet looking at her, way out there away from me.  The bad moment?  When a darn kid pushed her.  I mean, come on?!  She's tiny, she doesn't look mean, she doesn't even touch you, but you still have to push her?  I'm so tired of kids pushing her.  I'd love to teach her to push, but she's got such a sweet spirit, and I don't want to tamper with it.  But back to cute stuff...it was so cute to have her sit next to me taking a break, and for her to say, "play?" and when I say "go ahead," she's off and running!  And every few steps she'd turn back and say, "Bye mommy!" and wave to me.  See, a sweet child.  Not one that deserves being pushed.

Amanda

Late night

Well, this evening was a late night for many reasons.  I put Grace down at 11, and at 10 she was still up while I was doing some sewing, so I quit for the night, got a movie ready, some milk and some mozzarella sticks, and grabbed her and got comfy in bed!!  She devoured the cheese sticks, which was the obvious reason she didn't go to sleep...sorry girly!  She was so sweet, nuzzling into my arm and wanting to hold my hand :)  Soon enough she went to bed, and I headed back to my craft room.  Now here it is 1:20 pm on Thursday, and I finished making about 5 12x12 scrapbook pages with pictures!  I;m so bummed though because the new 12x12 plastic sheets I bought don't fit into the scrapbook I have, and they didn't even have enough spacers to make more room for the additional sheets?!  So now I have to call the company...

Well, now I'm going to read my new "soup in a bag" recipe book while Brad watches a movie...I LOVE having the computer in the bedroom so we can watch movies!!

Amanda

A COLD Day!

It's only 48 degrees here right now...BUR!!  But we are just going to bundle up and go to the community lunch program!  She had school today and did wonderfully, as usual.  She just wouldn't keep her hat and gloves on, that little silly girl!  We are taking sissy with us to lunch since she's back from work for a day.  She works about an hour away and so she comes home on her day off to visit because she misses us!  I swear!  It's her words!  So we'll see how she reacts to the cold!

All is good with Grace's health.  She is still denying a lot of food and drink, but she had about 8 tiny bites of cereal and about 7 TB milk with laxative, so I'm on the fence.  Not too worried, not perfectly ok with how we are doing.  The biggest problem with this is that she's not voided for about...since Thursday, and so I am worried she will get impacted.  But we'll see what happens. 

Amanda

Grace's Awesome Progress!

I totally forgot to write that Grace did absolutely great getting her IV at her sedated hearing test!  She didn't even cry or whine!!  I know that's progress I'd rather not have her working on, but since it's something we all have to deal with then...  Anyways...they had tons of light toys and had her so distracted that she didn't even notice!  Good girl Grace!  You are so strong!

Amanda

Community Activity

I'm so excited because while we were on a bike ride, we found a huge group of people gathered at a park right next to our house and they were picnicking and getting food out of a truck.  I found out that all through summer the city send trucks to parks and children get free lunches.  And if parents want to eat they are only $1 meals.  I'm really excited because this is every day.  What an awesome way for Grace to get exposed to crowds, and hopefully find some friends as well.  I'm going to have to be strong about going up to people and meeting them.  I need to get over my shyness and get this girly some friends.

Amanda

Head Start and Infant Toddler Evaluation

So we had the evaluation today that is an "exiting exam" to see if she's improved enough to not qualify for developmental preschool.  I want her to qualify because i can see all the things she's not doing in her age group (yes, I see every single positive as well but you just gotta be a realist when it comes to getting things your daughter needs to excel).  The evaluation gave her negative scores in three areas, but two of them the school district won't count towards the decision between being accepted or not.  I swear they better except her, or I'm going to appeal for sure. 

I also called Head start today to see if we could get her in to that when she's three, but they said she can't start until next year because she's turning three the day after the deadline.  So now she's going to be a year older than all her peers.  And even though she's a year behind developmentally, I still want her at the same area with her age group.  But maybe that's just me wanting th picute to look perfect...and it's just not going to be the case.  So I will be homeschooling her once she turns about 3.5 years old, and get her ready for pre-kindergarten.  I think it's going to be a long time until she's fully ready, developmentally, to go to kindergarten, so it's never to early to start.  I'm thinking that I might home school her completely if it looks like she's not going to comprehend the school atmosphere and falls behind.  I don't want her forgotten by the school system and then her falling any more behind then she already is.

That's pretty much it on that note.  We have to wait a couple months to see what the school district says...fingers crossed.

Amanda

Grace is on the Mend

So finally Grace woke without a fever, and she drank 1/4 of her cranberry juice this morning.  She had about 15 yogurt drops, but didn't want anything to do with spaghetti for lunch.  She did drink about an 1/8th of a cup of milk, so I'm not too worried about her not eating.  Off to bed she went, and she still doesn't have a fever.  I'm so glad to see she's wanting to eat again.  I hate that I have to hear her stomach growling but she is still pushing food and drink away.  I'm hoping she will keep getting better.  Her color is a lot better too.  Yesterday she was a ghost for sure.  Her doctor called to make sure she was doing alright...I've never heard of a doctor checking up on a patient, so I'm very grateful he did so.

Amanda

Change of Plans and Poor Grace

Well we were going to go to Idaho Falls but we hung around the house instead because Grace isn't doing too well.  After nap and not eating breakfast, lunch, or drinking anything but a few sips, I was tired of it.  I took her to the doctor.  No urinary tract infection, drainage in the throat, very slight swelling on lymph nodes, and one ear that is kinda cloudy.  We don't really understand why she isn't eating or drinking, or why she's had 3 days of 101 fevers.  So the doctor told me to give her her favorite drink, which is milk, which is what we've offered to her almost every half hour for these past 3 days.  So instead, he said get her ice cream and popsicles, as many as she wants, and let her eat them as long as she wants, whenever she wants.  He's hoping this will get fluid back into her.  But she even denied ice cream?!  So we have to go back either tomorrow or the next day, depending on how she's looking and acting.  So she's down for bed, and I'm going to do homework so I don't worry about her!

Amanda

A Beautiful Day

Well, Grace still has a slight fever, so she got some more medicine.  But we are still planning on going to Idaho Falls for grocery shopping.  We desperately need fruits and vegetables.  I think that might help her not get sick as much.  The sun is shining, the wind is just soft enough that we don't get too hot outside, and it's so nice Grace and I have already planted four strawberry plants in one of our huge pots.  We have 7 of them, so 2 will be strawberries, 2 will be blackberries/currants, 2 will be bushy flowering plants, and one will be...I don't know yet!  Grace had fun out there helping, as well as playing with Scottie.

That's it for now.  Off to Idaho Falls!

Amanda

Fever

I swear Grace never gets a break.  She woke up at 9:30 (super unusual) with a 101 degree fever.  Darnit!  And she was finally going to get to go to nursery at church for the first time in weeks!  I guess she'll have to wait until next week.

Amanda

Spina Bifida Clinic update

Physical Therapy: At age three start putting her in gymnastics or ballet to give her a more structured but fun therapy activity.
Urology: She has neurogenic bladder as well as the bowels (which we already knew about). So that means she isn't completely emptying her bladder. So medication will be necessary to help her bladder continue to grow because if it doesn't, it will be extremely small as she gets older and will cause serious issues.
Orthopedic: NO ANKLE BRACES!!! Dietician: add fiber to her daily intake of Miralax (benefiber) to help with voiding and overall health.
HEARING TEST: NO HEARING LOSS AT ALL!!!

 

Oh and her double eye surgery to correct her "lazy eye" is June 14th.  So back to Utah in two weeks.

 

 

Amanda