Our Matching Skirts

So for a while now, like a week or so, I've had a skirt cut out for me that I was supposed to sew. But I'd been lazy because it was a gathered skirt, and I just never had the push to do it! But today, I finished it!! Grace was a lovely little one today and slept for 5 hours, which gave me the chance to finish mine...and because I had extra fabric, I made one for her too!! And the amazing thing about that is that I didn't use a pattern, and I rocked on her skirt!! I even added a diaper cover so the skirt wouldn't ride up while she was wearing it! Go Amanda!! So we are definitely going to be wearing our matching skirts on Sunday for church!

Our first try, and right when Kailyn said, "READY!" to get Grace's attention, she whipped her head around and looked the opposite way!
Our second try...she would rather look at the fireplace...
Our third try...well, I didn't know the picture was being taken!
And finally, a good one :) Aren't they cute!!!

Another Appointment Today

So we went to see a Developmental Pediatrician today. I will make this post quick, as I'm backing off on the super long explanations as I seem to be the only one that reads this post. Sometimes...well, actually every day, I say, "**tap tap** is this thing on?" as I continue to post things and my comments continue to be ZERO. Whatever.

He said with motor skills Grace is at 11 months. Leg motor skills she's at 9 months. Language and communication she is at 11 months. She will walk. She will be able to learn in school. No autistic tendencies. No cerebral palsy. She will walk in her own time. It would be better for her to not have a walker as she will than be able to learn the whole: cruising at couch with one hand facing forward and getting to her butt from cruising. She needs to learn how to safely get up to walking position before we can just plop her in a walker and have her walk. So there. Mom doesn't know anything and just wants to push her daughter because her pride is shot about the fact that kids younger than her daughter by like 4 months are already walking. So from this point on, no talk of a walker, no talk of "what if's", and no worrying about her. I'm going to tell myself she's a 9 month old, treat her like a normal baby, not think about her diagnoses anymore, and just live with blinders.

**Tap tap** is this thing on?

Amanda

Disappointment

So we saw Grace's PT and Infant Specialist today. I guess you can tell from the fact that I'm not typing WOO HOO that it was a stupid meeting. They did their therapy with Grace, of course. But you could tell, right when I brought up the walker experience I had with Grace, they were already thinking no. And I brought it up since they didn't say anything like, "oh wow, she did well?" And again, they don't want her to get dependent on it. They don't want me to push her because she's developing at her own pace, and we shouldn't rush her and have her miss this huge gap of development. And what if we can't get her to walk on her own because she thinks the only way she can walk is with the walker? and in the 6 months she's been in therapy, she's made leaps and bounds and progressed through 6 months of development, so we need to just keep letting her learn at her pace. they aren't "ready" to give her a walker. who cares what mom says. and i understand everything that they are saying, but they don't understand what it's like having a kid that sits there, watching her younger peers walk/run down the hall at church, and grace is left behind. they don't know what it's like to have their daughter look back at them like, "why did they leave?" i can see it in grace. she's learned that she will be left behind. she's learned that it's ok to be left behind, and rather than trying to follow and catch up, she just sits there. it totally sucks. this whole situation sucks. i hate that my kid is going to be the only kid in nursery crawling. guess it's my own pride being shot down, and whatever is what i have to say to anyone thinking, "get over it amanda. It's not that big of a deal." because it is. i have a way that i can help her be mobile, just like her other peers, and rather than help her, i'm going to twiddle my thumbs and think, "someday she'll get there. in her time." Fine, so what I'm expected to do is shield my frustrations, my anger, my disappointment, my embarrassment, my guilt, and everything else behind a fake smile and the phrase, "she'll get there." I should just start telling people she's 9 months old so they won't keep asking me why she isn't walking, or give me the "oh" with the head nod and sad eyes of pity. i think i will do that. we'll just do more hours of pt, more hours of couch cruising, more hours of hand holding walking, more hours of speech and sign language, and tell everyone she's 9 months old. gr...so what do you have now? A mommy who's picked her lip to shreds (yes, I pick my lip when i'm frustrated) a child who doesn't understand ANYthing that's going on, and a future that's uncertain but is dictated by the PT's, rather than the parent.


a frustrated Amanda

Doctor Appointment Today!
SO today we went to go see Grace's geneticist and genetic counselor to get an update on paperwork, update on Grace's files, and to sign off on permission to share her picture and files to Dr. Dobyns (leading Microcephaly Researcher). I didn't really know what to expect at this appointment, and obviously, neither did Dr. Tezcan!
When we first walked in, they were stunned! She said, "is this Grace?" And we were like..."um...yeah." And she was just so happy to see how healthy she looked! She said, "I was NOT expecting to see a Grace looking like this!" And while saying that, she pinched the chubs on her leg. We discussed developmental aspects, and we shared with her the signs that Grace can do, showed her how she crawls (pretty fast these days) and about other developmental things we've seen her do. She asked about eating, and told her we were still working on transitioning to adult food, as she's having issues with the chewing rather than just sucking. We let her know Grace was on Pediasure for the extra calories and she goes, "oh, so how much of that does she get a day? One bottle?" And I was like..."Um...no...like...3-4 8 ounce bottles a day." She whipped her head around and went..."WHAT??? Are you serious???" So after that bit of excitement we realized that with Grace's low muscle tone (because of the 7Q36 gene deletion) we need to be VERY VERY careful that she doesn't get overweight, as she WILL NOT be able to carry herself crawling or walking. As she gains more weight, it will take away from space available to the muscle to grow, as well as making her too heavy! And even though we are feeding her that much, she was actually less weight than before! She's back to 19.5 pounds for some reason...
Anyways, she was super excited to see that Grace was crawling, and she didn't see any sign of autistic features (which I'm super excited about) and her communication skills (the little ones I miss like making eye contact, looking when her name is called) made Doc so happy! She and Kelly (genetic counselor--basically the translator for when we go over the genetic stuff) couldn't get over how well Grace was doing. From further checking, Grace has a high palate in her mouth, so they said to keep an eye on her eating and make sure no food goes up into her nose, and she confirmed my (and the PTs thoughts) that Grace will need braces to fix her feet, as they are curving inward. She was also measured for length and head circumference, but I didn't get those measurements, but once I email the doctor to get them, I'll add them to here!

One thing that I was worried about...among tons of others...was that when I take Grace's picture, sometimes her left eye's pupil (in the picture) turns out a pink to even yellow color, and I've seen in researching that that could be a sign of a tumor in the eye. But she checked it, didn't see a mass, and said it's probably because that's the eye with the dilation problem, so it's just catching the light at different angles and depths. Phew, that's good. We also discussed the idea of a walker, and I explained to her that both land and water PT's say to wait until she's older, that way we give her a chance to learn on her own. But I also let her know about our walker experience, and that I don't want Grace crawling while her peers are walking, and that I want to push her a bit to be upright and mobile. I even told her about the PT's worrying about her becoming dependent on the walker. She totally agreed with me, actually both of them did. They totally agreed that she should get a walker now, and actually have two other patients with similar issues that they gave walkers too, and they were fine in transitioning to walking. But they did say the mother's had to be really pushy to get what they wanted. She said it'd be great for Grace to see that she can walk rather than just crawl, and when she realizes it, she might be more willing to try on her own to walk. She definitely sees Grace walking independently (without a walker) in her future, just at her own pace. SO that's wonderful news, and when the PT and Infant Specialist come tomorrow, we will be discussing getting a walker for Grace! I'm so EXCITED!!!!

So a good day...and at the end, Dr. Tezcan said something that just made my heart melt...we were discussing that as Grace gets better, she won't need to be followed as frequently as she is now by Dr. Tezcan. And I said, "well, I'm glad we are seeing you now! I love that you guys see us as people, rather than just a number. You guys don't get us in and out, hurry up. I like that you take our time seriously, and are slow and patient with us." And she said, "oh, no, we don't see you guys as numbers at all. Grace is a wonderful child. Will I ever forget her? No. She will forever be remembered. She's been so influential in my life." And that's ALL I WANT GRACE TO BE!!! An influence to others!! WOO HOO!! In 16 short months, I know for a fact that Grace has influenced and touched someone else's life (other than just mine and the rest of her family!) Oh that's so wonderful. So all in all a wonderful doctor appointment. And here's a picture :)
Amanda

Project RIDE
So, this place is definitely one of the best places in the world! Project RIDE is a therapeutic riding facility for all people that have special needs of physical/mental handicaps. I worked there when I was in high school (7 years ago...WOW that's a long time!) and that was seriously my second home! Since I had a vehicle then, I would go there almost every day after school, and help clean out horse stalls, give horses lovins, grooming and tacking the horses up for the people getting to ride, and sometimes, I got to exercise the horses (that means RIDE them!!) I loved this place so much, and worked so hard because I loved it. Anyways, to the present time we go!

Fast forward to now, and we get to the point of the story. I feel like everything is brought into my life for a reason. And now that I have Grace, I see that I was meant to work at Project RIDE because I would have a child that has disabilities, and so I was brought the knowledge of this place. And because I knew of this place, I was able to get Grace on the list. But not only does the ability to have her on the riding list count, but the fact that I made two GREAT friends while I worked there!!! And now Grace gets to know and love them!
The first one is Jean and Grace. Of course Grace was more interested in the fan so she looks so silly, but as always Jean has a wonderful and loving smile on her face! She always gets so excited to see Grace!!
The one above this and below are obviously the same person, but I had to put the picture of Grace waving! I think it's so cute!! I just couldn't get Grace to want to face Mommy for the picture!
I love these ladies. They are so sweet. They were around when I was a teenager loving on their horses, and now I'm a mommy and they will be working with me when Grace turns 3. I love it because they've both said, "Come the day she turns 3 and we'll get her started!" I'm so excited!! They both love Grace so much, and I'm glad I have them both in my life, as well as Grace's life!

Amanda

16 Months old

I can't believe that Grace is finally 16 months old! It feels like just yesterday that I was holding a little newborn in my arms while we were sitting at the hospital, and now she's a big 16 month old! I would cry, but I'm so excited at where she is in her life, and how far she's gotten that I can't cry for her! I'm not sad about anything except her finding her independence a bit more each day.
Here she's acting nicely. She's cooperating, and I actually got a half smile! Yes, she isn't color coordinated, oh well! Our house's heater is set to 67 so we have to freeze until it can thaw us out!

And no smile here, but at least she's not arching!
Yeah, she wasn't having any of that! She was on the horses back for all of 3 seconds! By this point, she just wanted her piano.

And the piano is what she crawled for! She loves this thing...yet now that I've seen it fall on top of her as she's falling backwards (she didn't cry...just kept playing the keyboard) I won't let her play with it unless it's under the lip of the couch.

And here's the last picture...my FAVORITE!!! I love this one, if only I could have gotten a picture of her with the hat while she was on the horse but that was another thing she was having NOTHING of...the hat. Plus, it's like 3x too big for her itty bitty head!


Amanda

Grace's ATV

So Santa was so nice to get Grace an ATV for Christmas!! I was so happy that she got this, because I thought it would help her get around a bit better around the house. But who knew that it would take so much time for her to learn what to do with it! I thought she would figure it out quickly, but that's ok. I'm willing to help her along...(as I grit my teeth of course, but Mommy is doing better!) Anyways, the first ride she actually got upset and started crying, but this ride's gone much better. For whatever reason, she's being SUPER silly! I think it's because she loves SISSY so much, and whenever Sissy is around, Grace gets silly!






Well, there they are. This was at least a 5 minute video in total, but because most of the time is just her teasing us (finger on button but not pushing hard enough) that I cut all that out. So, she's learning!

Amanda

Nursery

Such a bittersweet time is coming upon us, speeding up faster and faster as the time dwindles away. In exactly 2 months, (59 days, or 1416 hours, or 84960 minutes, or5097600 seconds) Grace will be going to Nursery for the last 2 hours of church. Oh...my...gosh. I can't believe that the time is almost here. I'm...am I happy? Am I happy that my little girl is growing so fast that she is moving on to greater things? (Anything is greater than having to sit on Mommy's lap for 3 hours!) I don't understand where all the time went. I don't know what I'm going to do with myself for those two hours that she's having tons of fun with her nursery friends! I guess I'm gonna need another baby!

So anyways, today at church I decided to take Grace into nursery to see if we'd need some "practice days" before making the leap to big girl in nursery without mommy. (I knew my presence wouldn't be necessary. I guess a good thing about Grace's brain problem is that she has a lack of stranger danger. Not just a lack...it's not there! So for this ONE time, it's a good thing!) I wasn't needed, as I thought. She did great. She played, she climbed (kinda), she stood up at a child size car. Hey, she even got to meet the bully of the class (and I had to do EVERYTHING in my MOMMY BEAR power NOT to go growl at the kid for hitting her with a phone. She was fine, no damage, and she didn't cry.) That's another thing about her. Her pain tolerance is pretty high, so I guess that will also be good in Nursery, as she doesn't walk yet, which means fingers are GOING to be stepped on. (Hey, maybe that will help her get moving on those feet more) So I'm happy to say that the transition for Grace will be wonderful going into nursery...I just don't know how my transition will be. I've always had issues with leaving her in a class and leaving, because I'm just so proud of everything that she does, and don't want to miss a second of watching her. I love seeing her interact with her peers (which is RARE) and even more, I like seeing her interact with toys (which she rarely does for "play" purposes as much as "inspect and turn over and over in hand") I think she's going to be very good at making observations about things around her just because of how observant she is, and always has been.

I think my one biggest fear for Nursery, well two really (but they are about the same topic) is that she CAN'T sit in a chair. She can't sit in the normal, feet hanging, no side support chairs because 1. her balance isn't that good, 2. she DOES NOT know how to catch herself from falling to the side when her feet are hanging, and 3. if she turned to look behind her she would fall. So, let me just snap my fingers and show all you readers what does work for my little one! Look below at the FABULOUS Cube chair!
I love this thing...with a passion! This is the best chair that any child could ever use! You can use it two ways...well, actually three. One is this way it's shown, where I feel most comfortable with Grace sitting deep in it, feet on floor, high side supports. The second way is to flip it over and have her sitting higher, feet would be hanging and her side supports aren't as high. But with that, I put a box under her feet, and that gives her more stability. And the third way is to lay it facing down, and the backside works great as a chair for mommy! I love these chairs...this is what they have at the SCOE office, and we use them for the play days. I will have to see what I need to do about renting one from them, because...$100 is too expensive for this! (But in the end, I'll do what I gotta do...and I just saw on Amazon.com that it's only $50...SWEET!)

Oh, I said there were two things I was worried about...the second was the type of food they eat, well, food in general. Grace's eating development is behind (as is everything...gr...optimism mommy, come on!) Anyways, she is still in the eating level that consists of smashing EVERYTHING she eats in her hands to feel the different textures. And because I understand that it's what she needs to do, I allow her to for the most part. But will the teachers understand? And will I need to vacuum the room every time when I pick her up because I KNOW the crumbs on the floor will be from her? Probably, but I'll do what I need to so I don't feel bad! Also, along with the eating comes the choking. Somehow, we need to teach her that she's not supposed to suck the food, but to chew it and swallow. And that crackers WILL NOT go down by being sucked down! I guess I've got two months to get her working on the foods they eat! Or just send my own soft food with her. (I know...stop worrying. She'll be fine.) One thing I love (actually two) is that 1. The nursery worker has 4 kids, so I know she'll do great. And 2. is that I just got a calling so they won't be putting me in nursery. (I asked the bishop :) ) I mean, I would love to be in there with her, but I would always be focused on her and not everyone else. I need to do the breakaway a bit. I need to get back into scripture study, and this will definitely help :) I'm so excited!!

Amanda

Grace's Doctor Appointments...

Well, as many of us hope, the new year will ring in a change in the times, in the ordinary, or in the mundane. And for us, that rings true. In many instances in our lives, what continues to happen after the new year is the same as always. Tons of therapies and doctors appointments, but there is a difference in some of the particular appointments coming up that I'm so excited about! Coming up on Monday, we get to head to Grace's geneticist for an update on Grace's progress, findings of mine and Brad's blood tests (which I already know show that Grace's genetic fault didn't come from us) and the most important thing! We are going to be signing a waiver to allow the leading Microcephaly researcher to have all of Grace's records and MRI films! I'm so excited because he's shown a lot of interest in Grace and wants all her information, and so I'm wondering what we're going to get out of sending him her information. I'm not hoping for much, maybe if anything just an idea of what we might expect as she grows up. Maybe similarities between her and other children that he's going to pick up on that will help us guess what her life might bring. Then on Tuesday, we go to meet Grace's Developmental Pediatrician for the first time. That's going to be an exciting appointment too (90 minute at least) because he's going to run some developmental tests on her to see where her range is for physical, emotional, cognitive, speech, and a couple other areas of development. I know from the land and water PT's that her physical is around that of a 9 month old, but more than anything, I'm hoping I can get this doc agreeing with me that Grace needs to be using a walker! Now, I know he will most likely say no, but in the end, isn't it the parents choice? And sad to say, I'm nervous about what people are going to think/say out of the house and in church. The hubby thought we'd only be using the walker in the home, but I'm definitely going to be using it everywhere, so that she can see what freedom feels like! (Look at me talking like I've already got the walker within my grasp!) Anywho, I don't really know what to expect from this appointment, but am going to bring all my questions...and her binder full of information.

You think that's it? Well, no, it's not! Then a week after all these appointments, we go to the Spina Bifida clinic in Oakland for a 3 hour (at least) appointment with ALL OF HER DOCTORS!! At first for this appointment, all the parents that have been invivted to come have sort of a "round table" discussion about their children, ask each other questions, things like that. Then each family unit goes into their own doctor's office (just like going to see your own doctor) and there is a list on the door of every doctor that will come see you. And one by one, they come in, mark on the sign that they are "in", answer all your questions and share their thoughts with you, leave and mark "out", and then the next one comes in. And that just continues until everyone has seen you! I'm so excited!!

Now you think that's it? Nope, you're wrong! It's not! In February we go see her Optomologist to have her eyes checked again (hopefully she hasn't stopped using her left eye completely...) and will discuss a surgery date for straightening the eye. Now, this is definitely going to be an issue, as I'm all for the surgery now, while Hubby is definitely against it. My argument? I would rather have the surgery now, so that if it goes back to looking wrong, we still have a chance to fix it before she gets too old and another surgery would be pointless. Hubby's argument? Grace isn't old enough to tell us if the surgery has helped her see more clearly or worse, so how do we know if it's even helped? But the surgery isn't to help her see better...I mean, it is, but it's mainly to straighten the eye so she will use it more. So in a sense, it will help her see better because then she'll use both. But it's not like, "her eye is turned in, she can see perfectly!" No. We don't even know if she can see out of that eye at all! So...put that on the back burner till February and we are in the room with the doctor as mediator.

Well, as of now, I think that's it. But I am going to see who we should talk to about orthotics, as Grace's feet turn outward, she has barely a heel on either foot, and she tends to lift her right foot like she should to step, but drags the left, so I want to get that checked out. She will most likely need casting, braces, and shoe inserts, so we'll see how soon we should be starting the ball rolling on those things. Especially if we get approved that she can use a walker, than she will definitely need the leg/feet help.

Amanda

Sewing Projects for Grace and Beyond

So I've really gotten into enjoying sewing, whether it's clothing for Grace or toys for her. It's just so fun! So, my most recent sewing activity is this...

The picture is cotton fabric, but I will be using vinyl so they can be used it the snow. These bean bag chairs are what are thrown into the back of the pickup for all the cousins/grandchildren when we travel around the hills of Montana, and the ones up there are pretty trashy. So, I will be making probably about 6 of them to replace the old ones, and will take them up there when we go in July.
And then this ball is something I'm going to make for Grace, and if it turns out, I'll make one for all the other little ones that I know!! Looks fun to make!
I guess you can say this is my 2011 sewing list...starter list anyways! So the picture above this is 2 washcloths :) Aren't they cute!
And here are some sheep :) I just think they are so cute!!
And then this beautiful bear for little Grace to love on. I think she'll LOVE to have this. And I am going to add my own touch by sewing a little fabric heart and putting it inside when I stuff the bear. Aww so sweet! Ok, well I'm going to go watch a movie now, so I'll have to add onto this and check off stuff as I go!


Amanda

Grace Eating

I've been pretty excited about how well Grace is leaping and bounding in terms of her eating! Just like...last week...she was having to have everything pureed in our "Ninja" blender (AWESOME!) but this week alone, she's had a half of a ham/cheese sandwich broken into bite size pieces, eggs (scrambled) with small chunks of ham, and just tonight she had ravioles with broken up dried prunes!
These are awesome for Grace! There are about 20 ravioles in a pack, and each are about the size of a quarter, and she ate all but 4! So I would definitely recommend these for children that have issues with solids, because they just break apart in her mouth with minimal tongue/teeth use.




She's also, somehow, gotten over her tomato allergy, which is a HUGE relief to me. I'm wondering if it just went away with age. So that's wonderful because now she's able to eat all the things she absolutely loves, especially lasagna.

Here she is feeding herself while watching us take the Christmas tree down. I love that she can just hang out in her chair, rock herself with her feet if she wants, and drink her bottle. And whats more is that when she's done, she's able to get herself out! Woo hoo! And don't you just love the shirt! It's her hippy shirt!

Here's our little one eating her scrambled eggs... I just love taking pictures of her succeeding!


Amanda

Grace Walked!

Now, before you go jumping for joy, let me explain. Today she had Warm Water Therapy, which I'm SO happy for! We missed the past two weeks because she's been sick, and was so happy we were able to get back there. Anyways, after the session I went into the facility to change her, and on our way out, what did I spy but a walker that would fit her size! I'm not one to use things that aren't ours, but I just couldn't resist. I KNOW that if she had a walker, she'd be up and moving with all the children her age, but no matter what I say to people, their response is always the same, "she's too young. We don't want her becoming dependent on the walker. We wouldn't give her one until she's at least 2 1/2 years old." So basically what they are saying is that they won't give her one so that way so can be SUPER obvious that she's behind her peers, and so everyone can wonder what's going on with her and why a 2 1/2 year old is still crawling. Right. Sometimes their theories and practices are SO stupid. Anywho, back to my little story. So we (Grace and I) went over to the walker and I put her in it, not really thinking she'd do it, but secretly in my mind screaming "DO IT!!!" and she did!! She walked with it like she'd done it all her life! It was one of the walkers that go behind her!! I was so excited I jumped up and down!

This is the walker she walked with...well, not the exact one, but you get the picture. It's a reverse walker, which means it wraps around the back and is open in the front. It's funny though, they (her land PT) told me they don't make walkers Grace's size...yet...this one was! Hm, interesting. Now I understand what they are saying about giving her a chance to learn on her own, without just pushing her to walk like the kids her age, but I really just want her to walk!

I talked to her water PT after our little escapade with the walker, and asked her when she thought Grace should get a walker. Gr. Wasn't what I wanted to hear. She was the one that said she wouldn't give a child a walker until they were at least 2 1/2. Her way of looking at it, which is definitely how I need to start seeing her, was that Grace is at the development level of a 9 month old. I need to start picturing her, developmentally, as a 9 month old. She's just started cruising at the furniture, which is a 9 month development. It's so hard to see her that way though because she not that young! It's a crazy concept...to picture my daughter younger than she really is, and almost half her real age at that. It's frustrating. I don't really know if anyone can comprehend how...how confusing it is. Whatever...she walked!!

Amanda

Grace's Dress

Well, I've spent numerous hours at my sewing machine making tons of different things, but one thing I've been working on recently are dresses/outfits for Grace.

Here's what I've made so far: advent calendar pouches (25 of them for Christmas, or V-day, or B-days, etc), felt finger puppets (pig, monkey, hippo, giraffe, lion, fish, octopus and will be adding on dog, cat, sheep, cow, penguin, panda, mouse, duck, chicken, bear, and baby chick.), a size 4 dress for Grace to grow into, a WAY too small dress that I did without a pattern for Grace (I need a newborn girl to give it too!), 3 who who owls, whatever sensory squares I sell, and 3 pairs of pajamas for Christmas).

Anyways, so I found on someone's blog about making a pillowcase dress, kept that in the back of my mind, and when Grace went down for nap, I got to work on it. And about 20 minutes later I was done, but of course I had to wait 2 hours for her to get up before I could try it on her! Here's the pictures of the dress. (of course the pillowcase is about 10 years old so it's not a very cute fabric, oh well.) And I will definitely have to stitch the ribbon in place because my hubby just saw that she'd taken out the ribbon, the dress had fallen down her chest, and she was playing with the ribbon. Silly girl!



And below are the two other "Who who" guys I made :)

He's unstuffed...Grace couldn't wait until I stuffed it to get out of bed after her nap, so he's still skinny. But here's the fat one! I didn't put legs on these two because I got frustrated with turning the legs right side out after sewing them, so I gave up and said, "no legged owls are fine!"

Seizures
(I like to update alot if you haven't noticed. I'm using this blog as my journal for Grace, so I try to update whenever there's something going on, or something on my mind.)

I often wonder when I will be able to tell what's going on with my child completely. But I probably never will, as I've seen with dealing with my 16 year old step daughter. I NEVER understand what's going on with her! But anyways, I say this in regards to seizures. Grace, for the past week or so, has been doing something that I can't really understand, and am worried that they are mini seizures. It looks like what she did before with her first set of seizures, but is different in a sense that it doesn't go on again and again right then. They are throughout the day, at weird times, and they don't correlate to a fever. So I've wanted to email her doctor and see if there's anything to worry about...but I dread the idea that they will want to do an EEG again...blah...she hated it, as did I. So, we continue to relax, or at least try to, watch her as she does her erratic movements, and if they last longer than 5 minutes, than we'll call 911. I guess that's all we can do. Or at least that's all we can do until they realize they really are seizures and can put her on seizure control medication. But we won't go there until it's necessary. (Which I hope it never will be)

Amanda

Update on Health


One of the huge things that we've been watching with Grace is her neurogenic bowel and the chances of it happen with her bladder as well. This is because of the tethered cord, and the surgery she had to repair that tethered cord. She's always had the neurogenic bowel, and for this we were treating with Miralax, and still have to at times. (We've noticed that since we have her on the Pediasure with Fiber, she hasn't needed the Miralax as much!) So anyways, Grace she's a Urologist every few months to check the functions of her kidneys, bladder, and urinary tract, as well as getting ultrasounds done every couple months to check on her bladder and kidneys. What they are looking for there is a swollen bladder and/or dilated kidneys, which means the bladder isn't working right, and the kidneys are infected from not releasing the urine fast enough. We just had to take Grace in for another ultrasound and I emailed her Urologist to see how things were going, and we got the great news back that the kidneys look beautiful and the bladder was empty! WOO HOO!! I have been getting a lot of good news about Grace! So that's wonderful to hear, because I wouldn't want to catheter her to release the urine. I know some people that have to do that and it's just such a stress on them, but also the child as well. It's very uncomfortable to get cathed all the time! Plus, the chance of infection goes up so much. Good girl Grace!


Amanda

Grace Can Eat!

So we've had a lot of issues with Grace's eating adult food, because rather than chewing and swallowing, she sucks everything like it's a bottle nipple. So we've resorted to putting everything through a blender before we feed it to her, adding a bit of baby food to give it some consistency, and then feeding that to her. But I'm a bit pushy, and want her to have to work a bit for food. I don't want to cater to her feeding issue, or she'll likely be 15 and still eating pureed foods! Now, I'm not saying we haven't tried adult food before, but it gets really tiresome to have a child that chokes at every meal, numerous times. No one likes to see their daughter tear up and heave from food stuck in her throat. This is why we've been so lax on the food issue. But, then comes the mommy that wants her to be closer to her actual age instead of developmental...

We went to my work yesterday (well, my old work as I am now a SAHM) and I got to see all the less than one year olds sitting up at the table eating chicken noodle soup, ham sandwiches broken apart, and applesauce with a spoon. *Dang that comparing*. But I guess this time, it's less of comparing and more of, "lets just give it a try and see how it goes. If it doesn't work, no biggy." I've gotten used to the idea that she's a bit behind and will get there someday. So we went right home and I made ham and cheese sandwiches with extra mayo (gotta pack on those calories!) And she did GREAT!!! Of course, she did choke a few times, but was able to clear her throat on her own (she's got a great gag reflex!) She ate half of a ham and cheese sandwich, and that was the fastest I've seen her put down adult food! WOO HOO! So we tried it again with dinner too. Fishsticks with ketchup, and she ate 6 of them! WOW. She also ate quite a bit of a Granny Smith apple too. She LOVES fishsticks, especially if they are dunked in ketchup every time she bites. Ahh, what a wonderful thing to see. What a wonderful site to witness, when a child, my child, has gone a step further in her progression towards being on solid food for good. We have also kicked the bottle. Well, not completely. But for the most part, she's now drinking her formula/pediasure/Silk milk in her sippy straw cup! I just love watching her drink with a straw. We only do the bottle now at night, and when she wakes up in the super wee hours of the morning. I love it. I love when I'm so in tune with my little one that I can see where she's progressing, but also where she's needing a bit more help from digressing.


Amanda

Grace playing with Rudolph
December 10, 2010

I know these posts are kinda everywhere (date wise), but I just love showing off my little girl so I don't care what date they are from! So this gift came from Great Grandma and Great Grandpa, whom we call Dado and Papa. Dado was wondering if Grace liked the singing Rudolph, so I just had to show the video of her loving it! I like the part where she crawls off and looks back, because that's her way of showing, "follow me!" We play that game a lot with her. And her saying her gibberish was her way of saying, "follow me!" We always crawl away from her, wait a second, and then say "follow me Grace" so that's where she got it from! What's funny is that this is one of around 3-4 videos! We have caught her playing with it at different times and will grab the camera. The part of this I like the best has to be her showing affection, which is a HUGE thing for her. She has to always be prompted to give kisses, or hugs, or things like that. It just doesn't come naturally for her :) So I LOVE seeing her do it in this video, and not only once, but twice when she crawled and wanted Rudolph to follow!! Thank you Dado and Papa for the wonderful gift!





Amanda

Grace's Cruising at the Couch!
December 20th, 2010

So a huge thing for us is Grace's mobility. Seeing how she not only has the Microcephaly and the Tethered Spinal Cord (which both cause issues with mobility) she's also got Hypolasia of the Cerebrum and Partial agenesis of the corpus collosum, which also add a HUGE hurdle for mobility. The micro causes a delay in development, the repaired spinal cord issue caused her to have to retrain all her back muscles as well as restrengthen them, the cerebrum issue causes balance issues, and the corpus issues causes a difficulty in taking a normal step. Just imagine you having to get up to standing from sitting in a chair. We would just do it. Easy. But Grace has to think... "I want to get up. So, I have to put my feet on the floor. Then I have to put my hands on my lap to push off my legs. Then I have to lean my weight forward so I have to use my back muscles. Then I need to start my upward movement so I need to put my weight on my feet, then start to stand. I need to make sure my legs are ready to hold my weight. Then stand. I need to be sure to balance correctly." That's how it is and will be for Grace. So in working with the Physical Therapist, we've had months of pivoting her waist so that she realizes "Oh, if I want to move to the right while standing at the couch, I need to first lean my weight to my left leg/foot so I can then lift my right. But just lifting it won't work because I will just be rocking side to side then. I also have to move my right leg to the right, then bring the left leg to follow." Sounds easy, right? Well, finally, 3 months later, she's finally able to pivot herself. I say finally not because I'm stressed she's not doing it, but see and hear the frustrations coming from her when she can't go where she wants to go! So, here's the video! Of course it's super long, but it's so fun capturing these moments that are so special to us. Every little milestone, even if it's giving a face when I say "no" are huge things for us!

Painting with Ms. Allyse
December 7th, 2010

Ms. Allyse is such a wonderful person, and Grace just lights up every time she sees her! Ms. Allyse comes over every Tuesday to work with Grace on a number of different things. Mainly sign language and how to interact with people, as Grace doesn't know how to "play" with toys, people, etc. We've noticed that while she does interact with toys, it's to observe them rather than to play. She will turn them over and over in her hands and chew on them. But what we want her to understand is that a block will fit into it's similar shape, or that the teddy bear will sing when you push it's ear/tummy/foot etc. We want her to understand she can interact with things, so Ms. Allyse comes to work with Grace on that as well as TONS of other things. One thing I like is that she brings such fun things for Grace to do. On this particular occasion, Allyse brought all the materials needed to make a Christmas Tree hanging picture. It was so fun watching Allyse and Grace work together because they click so well! Every little thing Grace does makes Allyse just light up!

So here's Grace getting ready to paint...of course we don't want paint getting on her, so she's dressed with a wonderful plastic coverall!

And here's a video of the fun! Of course it's definitely adult guided activity, while I would love for her to do more child guided fun, but for this activity, it's more for mommy anyways! (Grace was in it for the fun of having paint on her hand while mommy was in it for the memory of her hands being oh so small!)




After we made the handprints, mommy got to decorate the tree with sequins while Grace finished up her session with Ms. Allyse. So, all in all, a wonderful day!

Grace's Who Who
I had a lot of fun making this for Grace!! It was so fun deciding which fabric to use for the body and legs :) Of course, this is the first one I made, and I know now not to fill it too much with stuffing, as "who who" now has a permanent forehead crease!
Here's my little superstar giving you a sign...can you guess what it is? BLOW KISS!!

Here's another sign...is it a tough one to figure out? I think it's Hi.
This is definitely hi. She likes to watch herself wave sometimes!! I also think her hairstyle is just beautiful, don't you?! Blonde and bed head, what could be better?
Here's Grace zoning out on me while picking at who who's eyes. At least they are sewed on...she will NEVER get those babies off! I just love sewing her toys and clothes. I'm getting better as the days go on, and it's all from teaching myself, and definitely from messing up and restarting so many times! I have two more of these owls cut out and I am just needing to sew them together, stuff them, and they are ready for the spotlight! They are more boyish colored, but that's ok! I am planning on making a whole family of owls for her, and we can make it into a counting/color game. Fun stuff!

Amanda

Merry Christmas!

I have to say that this was the best Christmas in a long time. One reason is probably because Grace is old enough now to interact with people...and presents! Though she didn't understand the idea of "unwrapping" the gifts, she loved playing with them. And I just loved her Christmas outfit! This year, I was sure to get a lot of pictures, as last year there are all of three pictures.

Here is little Grace, playing with the finger puppets I made her. She's got a giraffe, hippo, monkey, lion, two fish, an octopus, and a pig! CUTE! Anyways, we celebrated with the family on Christmas Eve, since Ciara and her little family wanted Christmas day with her in-laws.

Grace with her big Brother Skyler!! How sweet! They were playing with his phone. She was so grabby!! Her body language was saying, "this is MY PHONE!!!" How cute. Grace with her beautiful big sister Kailyn. I think this is such an adorable picture. Grace just loves her big sis, and sis definitely feels the same way!




Here's Grace with her little niece Andrea...yeah I know, not so little huh?! That's ok though. Grace is 3 months older. This was a wonderful night for another reason too. Not just because we were celebrating Christ's birth, but also because Andrea showed us she could finally walk! Good girl!

Grace was so done with the hat, but was nice enough to let us get one more picture before she took it off for good! I loved the idea Ciara had to bring the two hats though!! So cute!!
And now a random picture from Christmas day! This is what you get when: 1. It's raining and 2. A cat's grown up with chickens! Chickens and a cat sharing a kennel! Silly kitty.

Amanda

Microcephaly and Me...and More

I've already made $170 towards our Microcephaly Convention trip. That's pretty good. I'm hoping to make all of the money so we won't have to worry about dipping into savings, but we'll do what we have too. Grace is making some pretty remarkable progress, but intellectually she's still really behind. We've been working on covering things with a blanket and trying to teach her that it's there still, just hidden. At one point, Grace and I had been working at it for about 10 minutes with one of her small toys and she just DIDN'T get it. But when I switched the object to a book, she understood a lot faster. So I wonder if I need to do more work with bigger objects, and then move to the smaller as I see that she's understanding. It's the same with people though. When someone's in the room, I can say, "where's so and so" and she will either point or look at them. But when they leave sight range and I say that, she's just stares at me. Or she'll look around but not know. I'm trying to figure out how to teach her that they ARE still there, just went to another room. We do play "peek a boo" a lot, but it's still something that's difficult for her to grasp. Another thing I've noticed is labeling things. She knows the sign for "dog" but she doesn't know that when the dog runs in the house, that's what it is. So there's so much repetition in this house, you'd think we were all broken records! I guess that's the only real way to help her understand. We are also working on pointing out objects in books to let her know..."kitty...kitty...meow...kitty" and I've taken pictures of everything she sees around the house (crib, changing table, bottle, etc) and with those 100 pictures or so, we are going to make flashcards for her. I'll put them in an album and we can use that to help her remember what things are too. So, lots of things we are trying to do to help her get the concept that things that labels!

Grace has a lot of things coming up soon. We are seeing the developmental pediatrician soon, and we have to bring all the paperwork from all her therapy for that. I was told that will be about a 90 minute appointment because they will be doing tests on her to see what developmental level she's on. Sadly, I don't think Brad will be able to get off work for it so it will be just G and me going. Then we get another MRI done in January to check the condition of her syrinx in her back. Hopefully that will be fine. That will be another trip to Oakland so they can check her leg condition and control, etc. Then the much awaited meeting at the Spina Bifida clinic!! I will make sure Brad can get to that! 3 1/2 hour appointment time, and that's a "maybe, maybe more."

I don't think I would have traded her in for another kid. I know times are tough sometimes with her, and sometimes I get upset because she isn't developmentally up to par, but I'm so glad that she's not like every other kid. I'm so glad she's hitting her milestones at her own pace, so that she's sure she has learned it! Because, you know, kids that are "normal" do things just because they are "wired" to do it that way at that time. But Grace, with her developmental issues and things, she had to be taught to do everything. It's not a "she's at that age so she's just gonna do it." Its more of "if you want her to crawl, you MUST make her body move that way. Left arm, right leg, right arm, left leg." That's how it was done with everything. We had to break down everything she should have learned on her own and show her body how to do it. But I'm so glad we did that, because it just shows how much she's had to learn, and how well she's doing! The fact that she's now side stepping at the couch is HUGE!!!! That's the most HUGEST thing we've seen her do since the last HUGEST thing!! Gosh I love this kid! Would I have another? Heck yes! Brad's already said that when we do, he'll be shoving food, water, and vitamins down my throat so that we aren't told again that I was starving my baby while she was inside me.

Almost the New Year

Am I excited about 2011 coming? I don't really know. I mean, 2010 has become a bit stretched...so I guess it would be good to have a new year come around. I would like to do the whole "It's a new year, now I'm going to watch what I eat, workout and lose some fat" but I know that's not really going to happen. And in all actuality, I need to gain MORE weight, and while I do need to work out, I tend to lose my fat really easily, and that's not too good for me. Brad doesn't want me back to skin and bones (yet I liked how thin I was) Anyways... I do know that the new year brings my next year of life, the big 24. Hopefully I will look older to people (doubt it) and they can stop thinking I'm a teenage mom that got knocked up (yes, I have gotten the looks before). I'm just not too worried about my looks, or about impressing people. But the stares are pretty annoying, so maybe the coming year will also bring me wearing make-up more...hm...

I do know that when February comes, we will be even more busy than usual. Well, I will be anyways. Starting in February, Grace will start speech therapy as well as a more aggressive Physical Therapy, and that could very well include leg braces and/or a walker. By that point "they" (whoever they are) feel that she should definitely be mobile (walking) and talking, and if not, then more help is needed. So I'm happy, yet also curious as to how I'm going to stretch myself for all the extra therapy she will be receiving. I'm already doing Physical Therapy every other Tues, Infant Specialist ever Tues, every other Wed is baby gym day, every Thurs is warm water therapy and every other Thur is music therapy (before wwt). Then every other Fri is play day at the therapy group location. Shew! That's a lot! But I wouldn't change it for the world. I definitely feel like all this running around brings Grace and I together, and really shows me her willpower, and makes me want to be just as strong as she is (or at least try).

Hm...what other new things are coming in the New Year? I have tons of projects I can't wait to put into play with the little family we have here :) Countdown to Valentine's Day, Special Birthday day, St. Patrick's Day activities, April Fools day surprises, countdown to Easter and Easter projects...etc. I can't wait! The Valentine's day one I can't wait for! More projects are being sewn too in the new year for sure. I'm getting better and better at my sewing as the days go on. Got two pajama bottoms made today, and the third just needs the drawstring finished.

Hm...the new year came fast...can't wait!

Cruising

I never thought I'd see Grace take steps. I never thought I'd even see her move her feet forward in the walking motion. But, anything with Grace is possible. She has started taking steps while she's leaning against the couch! Now, mind you, they are extremely tedious and she has to work really hard to take them, but these steps are well worth the work. I think this has been the thing that is worked on the most not only in Physical Therapy, but also in Warm Water Therapy. We are always working on her side stepping. For the most part, it's the adult shifting her weight at the waist, and with that extra help, Grace is able to move her foot to the side and reach whatever we are tempting her with.

Just these last couple of days, she's been making remarkable strides. Yesterday I had to side step to get the remote control, and I just had to help her a tiny bit with her weight shifting. And this evening, she side stepped and transitioned from holding onto the couch to leaning on Daddy! He was laying on the floor a foot away from her, and she side stepped to him, and then pivoted her body to face him, was able to stand with one hand not holding on until it got to his shoulder, and then she was there! WOO HOO! It makes me so happy!

Another little "hurray" is that she knows who "sissy, mommy and daddy" are. But only when we ask. "Where's Sissy?" And the person HAS to be in the room. If they aren't, then they don't exist. But still, that's wonderful!


Amanda

The Truth

I love this. I found it on a friends blog and had to snag it. It's so beautiful, it's so true...and it's so what I will need to hear throughout my life. I will need to remember this, memorize it, put it on the wall in a frame so I don't forget that I'm never alone.

"Meanwhile, the moment we get tired in the waiting, God's Spirit is right alongside helping us along. If we don't know how or what to pray, it doesn't matter. he does our praying in and for us, making prayer out of wordless sighs, our aching groans.

He knows us far better than we know ourselves, knows our pregnant condition, and keeps us present before God. That's why we can be so sure that every detail in our lives of love for God is worked into something good."

Romans 8:25-28, The Message


Amanda

Grace's Wish

So, since Grace has Microcephaly, I am deeply involved with the Foundation for Children with Microcephaly. As part of that organization, every child is given the chance to have any wish they have come true. Kinda like Make a Wish Foundation, but the child doesn't have to be terminally ill. I've been trying to come up with an idea of what to do for Grace. I don't know what to even start thinking about! Of course, the idea of a walker paid for is nice, or a trip somewhere. But I want this one wish to be worthwhile. I want it to be something that will help her for an extensive period of time, or to be something that will be remembered forever. Then comes the next thought in my mind...should I wait until she can make the request? Will she ever be able to make a request like that? I am going to be optimistic and say, "Heck yes she will!" Hm...thoughts and things to contemplate.


Amanda