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

Seeing Santa and Mrs. Claus

I love taking every opportunity that I can to allow Grace the fun things in life. Even though they might be beyond her mindset at this point, the memories will be there in the photos. Thus...bring on the photos!At first she wasn't too sure about going to them, but once she realized she could pull the beard, she was all set!

They were so sweet with her! Before I handed her off, they played with her hands, talked and waved to her, and let her get comfortable. The bear was a gift from them, and that was the prettiest bear they could have chosen. They were such sweet people! Santa's the best!

Amanda

Hanging out Outside with Daddy and the Pup

So we got a new puppy. Not like life isn't stressful enough, but I think that it's great that Grace has a dog that she can grow up with. His name is Scottie, and he is a Dachshund/Spaniel. We got him at 2 months old, and I think it's been about a month. If that. He is such a sweetie, and is still learning the ropes of the home (potty training) but is a wonderful addition to the family. Brad loves to run around and have Scottie chase him.

On this particular day, Daddy had Grace hang out in this chair while he was raking leaves, and we put the pup with her so she'd have a buddy. It's so funny how happy he is around her! Just loves giving her kisses, and she's learning how to push him away when it's just enough!




I just love these pictures of my sweet. The picture at the top of the list is her pointing at the chair because she wanted the pup to come back up :) How cute! I can just look in her eyes and see the world with all happiness. She is such a beauty to me. It's like, looking at her, I can see happiness, love, peace, and respect all wrapped up in one. She is the epiphany of love.

Amanda

Health Update and Fevers

First of all, the specialist said the fevers, sweating, and crying while in the car seat doesn't have to do with the spine. Crisis averted.

She spiked a fever again today. 102.5. It's been a week of these fevers now. It's pretty much: fever, Tylenol, 4-5 hours later another fever, so more Tylenol, etc. I've been at my wits end trying to comprehend this, and trying to understand why I'M the only one worrying about this. So I called the doctor AGAIN and he ordered a chest x-ray and urinalysis with a catheter. Blah. Catheters and Grace mean UTI trouble...hopefully not this time though. Anyways...

I got my blood drawn while waiting for the x-ray tech (to check genetic factors for her issues) and Brad got his blood drawn as well (same reason) and to check if we have any genetic issues that could be passed to another child. She did great getting her x-rays; one standing facing forward, one facing to the side standing. She was pretty nervous, but was a champ! After that we headed upstairs for the urinalysis cathing, and while there the ped. said the chest x-ray was clear (whoo hoo!). We waited around about 45 minutes...grrr....and were finally seen by the ped. who told us her urinalysis was negative too. So he swabbed for strep (since big sis has it BAD), flu, and 2 other infections. At this point, I'm hoping it will just say flu so I don't have to worry anymore...even strep I can handle, as long as we will know why she's been so feverish. But he said strep is usually really rare for children her age to get. Oh, and no ear infections. So that's where we are now. She's gotten a lot more sluggish, sleeping more, and is a lot pickier with food intake. Bottle intake has increased immensely to the point where she's been up between 12-2 at night for a whole 8 ounce bottle! Yeah but blah, as I get grouchy with lack of sleep...

Hm...we can't go to water therapy tomorrow. Her ped. said to stay home, and try to have her relax and not do anything too strenuous. That's not good because then it will be three weeks before her next session. But I do agree that she should relax, as she's been more tired. I'm only hoping she will feel better by Friday, as Alta is having a "Day with Santa"!!! And I need Santa/Grace pictures! So cute :)

Update for me. I don't usually post about me but this is important enough (I think) to have it on here. I'm going in for a mammogram. Yuck. But I found a lump, and the hubby felt it too. Dangit. Hopefully nothing, probably nothing, won't be anything but breast tissue (see?! I'm psyching myself up and being optomistic).

So aggravating

I don't even know where to start. Grace has been having fevers since Wednesday, it went away Sunday evening, and then it came back tonight. I've been doing a lot of research about her sacral agenesis, tethered cord, and the fluid in her spine and found something called syringomylia, also known as hydromylia. This is a cyst or cavity that forms within the spinal cord. That's what she has. That's what she got after the neurosurgeon did the tethered cord repair surgery. She's got a pocket of fluid in her spine, and from one MRI to the next, the pocket of fluid has grown. Now, not by leaps and bounds. But enough to be seen on an MRI, and to cause alarm. But does the neurosurgeon tell me it's called "syringomylia"? NO. Did she tell me that if this "syrinx" (another name for the actual cyst) expands or elongates too much it could destroy the spine and cause paralysis? NO. She said, "well, we'll keep an eye on it. But we won't do anything unless she starts to lose muscle tone/use of her legs." So I was like, "ok whatever you say." But after researching today, the loss of use of her legs is because of the spine becoming damaged. Unrepairable damage. Holy crap! How can that NOT be something that's important to share with a parent? And why is it that she's told me they won't do another surgery unless the loss of movement begins? Which means you won't fix the problem until it already has started damaging to spine. What sense does that make?! Deeper into the research I found that once the syrinx forms, any pressure differences in the spine could possible result in damage to the spinal cord. So there could be damaging forming as I type, but because it's not enough to show obvious changes in leg use, we aren't doing anything about it. So, I'll move on and get to the reason I brought up the fevers. So she's not just been having the fevers. She's been sweating really bad, and it changes so fast that the next time I check for sweat, she's dry. Also, she's got neurogenic bowel, which means she shouldn't be able to go on her own, but now for some reason, she's been having tiny voids. Weird? But after researching after a while, I found that the syrinx could cause spinal arachnoiditis, which is an inflammation of the membrane surrounding the nerves of the spinal cord. This could be caused from an infection/virus, direct injury (maybe from the surgery?), chronic compression of spine nerves (from the tethered cord?) or complication from spine surgery. This could cause disruptions in the parasympathetic and sympathetic nervous systems leading to abnormal body temperature and sweating, and bowel control issues. All of which Grace is having.

So I'm trying not to freak out about this. I'm emailing the neurosurgeon tomorrow morning, if not tonight, and I'm going to give her my hypothesis about what might be going on. I also noticed that when Grace sits in her old car seat, which is more confining, she screams and cries. So is that because of pressure on the spine that had work on it? Because she ONLY cries in that car seat, not her new one. So there's all these things that just don't seem to be adding up.

To top it all off, Grace has two more teeth coming in, and when we went to see her ped. he said fever could be from teething. Right, that's just wonderful. She just happens to have a reason that the doc could use as to why she's getting such high temps, yet she's NEVER gone that high from teething, especially when she had 4 molars coming in at once. I just want to know what's going on with her. I want to know why all of a sudden, a fever is haunting my child, and why the doctors don't seem to care! And why I have to be the one researching, instead of them researching?!

Oh, wait, that's not even the topper!! I threw my back out again! That's just dandy. I don't even know what I did to do it, but I was sitting here typing earlier and it just tightened, took my breath away, and now I can barely walk. I'm just feeling so discouraged because of all the issues we are having. I really hoped that my typing it on here would help relieve some of the stress, but it's just not good enough. I feel like I'm on a roller coaster, and as everyone knows, they go up and down. Well, I'm on a down, and I don't seem to be going up anytime soon. I mean, there's pluses in my day. I had a friend come observe Grace's therapy this morning, and then we met for lunch and chatted for hours, but those ups are so small that you can't even feel them. Uh. Deep breath.

Grace has been getting up in the middle of the night. Last night, I went to lay my head down at 11:45 pm, and she started crying. So I gave her a bottle, and when I laid back down and was almost asleep (like 2 am, yeah, alot on my mind so it's hard to fall asleep...plus my husband snores.) and she started screaming this time. I was pretty out of it (sick and tired of having to get up) so I gave her some tylenol, gave her teething tablets, stomped around to show my disapproval, and went downstairs to watch tv until she finally decided to fall asleep. Well, as I sit here typing this at 12:06 am, I see the lights on her monitor going crazy. I just had to go up there to give her a bottle at 11:45 pm because she was fussing. She fell asleep on me so I put her back to bed, and now she's not going back down. I am getting to where I despise putting her to bed because I know she will be back up around the time I'm going down. And I hate that I don't know WHY she's doing this in the middle of the night? Why she just can't keep sleeping through the night like she was doing two weeks ago? I don't UNDERSTAND?!

Christmas is 10 days away. No decorations are up (and yes, that means the tree too) and I have absolutely NO holiday spirit. I told the hubby a couple days ago that I won't mind if we don't put the tree up. I mean, Grace won't understand what it's for anyways, it's a lot of work and I'm plum exhausted, and on top of it all, I'm feeling the horrible grasp of depression wrapping it's long black fingers around my body. I've overworked myself trying to do fun Christmas stuff (family letter, baking 300+ cookies for friends/neighbors) and so now I just want to be done. Gosh I sound so dismal, don't I? I'm sorry! Just venting. For the sake of pictures though, and for tradition purposes, it will probably go up. Maybe this weekend.

The Future

I wish I knew a fortune teller. Someone that could tell me my future, and be telling the truth. That way, I could know what's coming, especially when it comes to Grace.

She's 15 months old, and just learned to crawl on hands and knees. And that is so awesome. I couldn't be a happier mommy. She's like my drug of choice. Seriously. She gives me such awesome highs, and I can just be around her all the time, helping her through her life. But even though I'm so excited about the highs, and about her accomplishments, I still hurt when I see what she can't do. I know that there are so many parents out there with special children that feel the same way, and I'm going to have to just get over it, but today seems to be an especially hard day, and I just need to post about it so I can let it go. So I can get the jumbled words out of my head and into some sort of form. I want her to walk. I want it so bad. If I could give something up so she'd walk, I would. I'd give my sight, my hearing, my ability to walk...anything. I see the children around her walking that are younger or her age, and it just tears through my heart. And yesterday, maybe it's just my imagination, but I could have swore that when one of the children looked at her and then walked off, that look read, "you're slow." I know. I'm probably going insane. But having to hear the "poor Grace" and seeing the children run off and leave her behind, it's brutal. It's like, taking her to church on Sundays is my own personal torture system. I want her to interact with the children, even though I know it's going to hurt. But they, being the therapists, won't do anything to help with the walking until she's 18 months old and she won't try a walker until she's bigger. They don't make them that small. Gosh. A walker. Nothing against children that use them, I just never knew my own daughter might need one. The therapist says she doesn't want to give one to Grace yet because she doesn't want her becoming dependent on it, and that makes sense. But maybe if she realizes she can walk with the walker, she will be more willing to let go a bit and try it out on her own!

What does the future hold? I wish I could know. Even just a tidbit of information would be good. We bought Grace an ATV for Christmas. One of the little princess ones that goes like 2 mph. I am hoping she can use that to get around outside because I want her to be more independent in her mobility. But will she understand that pushing the button will make her go? Or will I have to rig it so I can push it while walking beside her? Why is it that a little bit of future can't be given? Like, a one time offer? But if that were the case, it would have already been used up with the question of, "will I ever get pregnant..."

ALTA is aggravating

You know, sometimes I just wish that things would work in my favor. I mean, yeah, I can obviously see what good things are around me, so don't even tell me to "look at all the good things." Right now, I just want to vent.

So, Grace is only 19 pounds. For her age she should be around 24-26 pounds. She's in the 20th percentile. And she's only hit 19 pounds after 3 months of being 18 months. And I know weight isn't a huge issue, but it is because if she's not gaining weight then she's so busy that she's using up all her fuel intake, which recently, has been about 1% what it used too. Weight is drastically important for her. She is on a high calorie diet, which means chicken nuggets, fish sticks, chocolate ice cream, full fat yogurt, full fat mayo, butter in EVERYTHING, and I think you get the picture. Her dietitian said she should be getting 1,400 calories a day. I did a 4 day diary of all food intake and I was lucky to calculate about 600 calories. But it's like taking a horse to water. You can take them there, but you can't make them drink. I can offer her all the food she loves, which is everything, and if she won't eat, I can't make her. But what's the alternative? Feeding tube or G-tube if she starts dropping weight. And I don't want that. And she won't either. I don't want any more scars on her little body. The one on her back is enough.

Anyways, back to why I started talking about her weight, and why ALTA is in the headline. We are going through ALTA for all her therapy and things like that, and when we were told she needs pediasure, we realized that it was something that was WAY too expensive for us to pay for. So her pediatrician said we could go through Alta and they will pay for it as long as there is a prescription. So I got that, scanned it and sent an email to my worker, and she tries to tell me that ALTA is a last resort payer,and we need to go through WIC first. Really?? So I talked to the Head nurse at SCOE and she said it shouldn't be this difficult. All they need is the prescription and so I think I'm getting the run around. How aggravating! When she's healthy, she goes through 3 cans of pediasure a day, maybe more. And adult food for some reason is just not working with her, so Pediasure is needed like air to breathe is needed.

I gotta keep breathing. I need to relax. When things get stressful like this, even though to some this might just be a little thing, I start to freak. But seriously, it's needing to feed my kid and not being able to do it. This is when the stupid thoughts of, "I just wish..." would come into my head, and I need to just push them out because they just drag me further into depression.

Angel's Wings

My heart is heavy this morning as I prepare myself to attend a funeral for a little 15 month old girl from my church. I didn't know her family that well because they've been out of church for so long battling alongside their daughter as they try to beat leukemia. But the passed few months a bond has started growing between the mother and I, and I am happy to say that we grew to be friends. Little Lilly and her family battled this horrible disease for 8 months, but in the end, Lilly was meant to go back with her Heavenly Father and do work there. She passed away peacefully this past Saturday night. I loved what her mother told me when I visited with them one time... "we play when we can. When she's awake, we play. Even if it's 1 am. So we had a late night last night, or early morning." And then she gave such a beautiful smile, and I could tell she was looking at the memory in her mind. The memories they will always hold of their beautiful daughter. The chemo and bone marrow transplant just didn't work for this aggressive disease. But for the 15 months that little Lilly was alive, I can firmly and 100% say that her family was by her side, making memories. And though her body isn't here anymore, I know, as does her mom, dad, and big brother, that her spirit will always be here. And will always be near. It seems so unfair that children should die so young, but I am so thankful that we know that we all will be with our loved ones in the future. And that...that is what helps us to keep living. To move on without forgetting...and without worry and sadness that we will never see them again.

Signing is wonderful

I just have to say that I'm so excited about what Grace did today! I was getting ready to feed Grace breakfast this morning and I asked her while signing the word eat, "are you hungry? Do you want to eat?" And then Grandma did the sign, and then Grace did!! And then later, when we were wondering if she wanted more, I said, "you want more?" And signed the word, and so did she!!! HOLY COW! This is so wonderful. I am so excited. So now that's dog, more, and eat. WOO HOO! Oh, and of course bye bye, hello, and she blows kisses. Good girl Gracie.


I'm so sad to say that my friend's little one year old grew her wings last night. After a fight with leukemia, she went to see her Heavenly Father. For privacy purposes, I won't put their names, but if you could all just think of them for a bit in your busy lives.

We are all still here!

Gosh I feel like I've fallen off the face of the Earth! I haven't blogged in quite a bit, to me at least. Anywho...

So Thanksgiving was uneventful, which is always good! It was just the four of us for dinner, which I LOVED! Sometimes, catering to others is just to much stress. Grace liked everything but the turkey, (I think it was too stringy for her yet) and devoured a whole piece of pie by herself!

Of course Black Friday came, and me and the hubby went out and braved the crowds. If you were at Walmart, yes, I was the maniac woman carrying two huge boxes that were ATV's for children! All in all, Christmas, birthdays, and presents for future friends that have babies are all taken care of :) Sweet!

Today we went to get tons of flannel for the taggie blankets I am going to start making to earn money for the Microcephaly convention trip. I'm really hoping these things get pretty popular seeing as I've spent so much already for all the supplies. Plus, it would be good to go to the Convention and learn about my little one!

Scared...

There was a guy outside Walmart with a gun. While we were there. And we all stood around like deer in headlights. And for the first time, I know what the feeling is for a mom to feel like they are completely helpless in protecting their child, but willing to risk their life to try. I balled like a baby in the truck after the ordeal. I mean, who wouldn't?

We were just about to finish checking out and some woman ran in screaming. A group came with her so I thought, we thought, they were screwing around. Then all of a sudden tons of managers came running, and I mean RUNNING, from ALL over the store. I wanted to know what was going on, so I walked over to the trashcan...near the entrance...where HE was spotted. I heard a woman on the phone to the cops..."we are the Walmart, the Walmart in Sacramento...there's a guy...there's a guy with a gun..." By the time we were checked out and left (felt like forever but was probably just 4 minutes) people started saying the guy was gone, had ran off. We walked out the door while I was holding Grace too tight and crying into the nap of her neck, hiding my face from...everything... and there were cops EVERYWHERE. Did I feel safer? No. That shouldn't happen. Someone shouldn't want to kill another human. I don't understand. Am I scarred? Yeah. Still scared and I'm home.

Oh what I would have given for there to have just been a fight or something...

FUNDRAISER! Please read.

There is a Microcephaly Convention coming up in Arizona in 2011. It's roughly $900 for me, Brad and Grace to go, and we really need to so I can hear all the wonderful lectures, go to the knowledgeable classes, and meet the very important Dr. Dobyns! I just got my first fundraiser pamplet going, and hope you can help!

I am selling Taggy blankets. They are 10" x 12" blankets with up to 14 tags hanging all around the outside of them. They are:

$15 for just the taggy blanket. If you want a taggy pillow, it's $20. And if you want bells in that pillow, I add $.50 for each bell

The fun part is you get to choose the 14 ribbons, and the fabric you want! Of course, that's from my collection. If you would like a pamphlet, please send me a message with your address on it! Or send me your email address and I can email you an attachment of the pamphlet.

Enjoying the Sun...and the leaves!

I love taking Grace outside, and she loves it just as much...if not more! The sun feels wonderful, the temperature is just right, and the leaves are a new item of utter amazement that Grace loves to observe. Turning them over and over in her hands, she looks at every color, every spine, and every vein of the leaves, and then when you think she's done...she WAVES it HIGH in the air!!!

I have to say thanks to a wonderful friend of mine who's name is Annette. She made this top for Grace, and it is finally fitting her! What a beautiful top, don't you all agree?!

Leaves, leaves everywhere

Daddy had a good thought in mind today to have Grace play outside for awhile. I didn't really want to stay outside. I wanted to be a hermit crab and hide in my shell, the house. But whatever, Daddy knows best sometimes. So we let her play next to the leaves. She was so excited about them, and observed them so much! 5 minutes quickly turned into 15, then 30 then 45 minutes later, and Grace was still happy out there! She had all her leaves surrounding her, and was perfectly content on crunching them, munching them (yuck), and slapping them around on her stomach. I've noticed that she does that when she gets really excited...slaps her tummy. So cute :) So Grace!

I decided to do an art project sitting next to Grace outside since she just loved it so much...seriously...she didn't want me! I would come up to her, hoping she was ready to go inside (because for some reason I just wanted to be in my shell) and I'd put my arms out and say "all done? Ready to go inside?" She looked at me like, "YEAH RIGHT!" Then she kept going on with what she was doing. Didn't even raise her arms to me. So I strung leaves on a string (she picked them while I strung them). She really picked some good ones! So pretty!!

Sprinkle on me!

I finally found our old camera, and I'm so excited! It's actually been with me almost everywhere I went as it was in the diaper bag...hmm...I thought I looked there...oh well. Anyways...

I love how fun Grace lets every moment in her life be. I love how happy she always is, and how carefree she is. Like this particular day. Daddy took her out back to play in the sprinklers. He sat her in the box so she wouldn't scrape her legs up on the concrete. You would imagine, or at least I would have, that she would not have been happy about the drops going on her face and in her eyes, but she loved it!

I love her sweetness so much. She is such a delight to have in my life, in our lives, and I just LOVE HER!!! Oh, and of course the hubby too!

I think I'm done

I really think I'm done with the gratitude challenge...I just don't have time to get on here every day and then think of something I'm thankful, especially since I heard some not so good news that has now really bummed me out. But don't worry, it's not about Grace.

Moving on to Grace... we met with a Physical Rehabilitation Doctor today and he said she's definitely developmentally delayed (duh) and that she's got some motor issues that he's keeping an eye on. I guess she's not flexing certain parts of her legs/feet like she should be, and so he's worried about walking issues. But we will go back to see him in 6 months and see if he notices the issues still. But he said that everything we are doing so far is great, and that I'm doing the most that, at this point, I can do. So that's good to hear...

A little plea for my all of four readers...please comment! Sometimes I really feed off the comments when I'm having a bad day. And if you all have any way of getting some more people to follow me that would be awesome. I would love to have a lot of people following, and having my support system growing

Grateful 8- Friends

I have this special friend, and everyone needs to know about her. And not only is she my friend, but she's also Grace's honorary aunt! Pam. What a sweetheart. She's like a mother I never had, but now have a relationship like I can go to her for mom advice/help. I met her in church, and am so glad we connected, clicked, and are still friends after so long.

Having friends is so nice, especially when all they want in life is to help you and connect with you so well. I'm so glad we are friends Pam!

Gratitute Challenge Day 7

Oh rain, rain, stay here, I love to hear the pitter patter of the rain on the house...on the roof of the car...and on the umbrella. I am so thankful for this rain. Grace loves looking up in the sky and feeling it on her face, and I love watching her feel it on her face for the first time!

I also like it because it clears the air for us, so that it can be clean and fresh. I also like it because it feeds my garden, and then I don't have to!

Gratitude Challenge Day 6

I love the weather. I am so thankful for breezes especially. Brad, Grace and I went to help a boy in our ward who had a project for his Eagle, so for once we actually participated in someone else's life!

We had to paint the parking blocks at a high school so the students would know where to park. Sounds boring, you think? But no way! There were so many people from the ward there, I brought Grace's pack-n-play so she could roll around and not be strapped in a stroller, and we all had fun gabbing and painting. What he had scheduled us to do in 4 hour only took 2, and I think it's because of the breeze. It was warmer than usual for November, but those slight gusts of breeze kept us cool, and refreshed us when we got tired from kneeling and standing over and over.

I love thinking to myself that the breeze is from Heavenly Father just walking by me. That He's all around, helping everyone around me, and the breeze is Him walking by.

The closeness and love that I feel when I feel those breezes keeps me happy inside, and it's a constant reminder for me because I'm always going to have to be outside, and when I am, there pretty much always a breeze.

Ah, what a Saturday. A day of service to a fellow brother, and then on to Sunday to go to church :) There will most likely be a breeze when I go outside tomorrow too!

Gratitude Challenge Day 5

Today, my gratitude and thankfulness definitely goes to the teachers from SCOE (Sacramento County Office of Education). This gratitude will be unchanging, and has changed my life drastically for the better.

We went to PALS play group, nothing out of the ordinary. Grace of course went right to the rice table, which she loves to play with so much. After a bit, I wanted her to explore, as did the teachers (they had bought new toys that they wanted her to test out). So she took off, playing with this toy, that toy, and crawling on her belly. Then, in the blink of an eye, she was up on hands and knees, crawling! Seeing her decide, all of a sudden, that she's going to hands and knees crawl is like seeing a butterfly land on a leaf, and for a split second, choose to open it's wings and show your their glorious markings on their wings. And then just as quickly, they fly away. And she was down, and back to tummy crawling. But that's ok! They saw it!! (And to think that's not what I'm thankful for in this particular situation!) Grace and I a bit later went to do art (Turkey's out of handprints) and then played some more. Snack came, and this is when the blessing came.........

The feeding specialist noticed that Grace was very capable of bringing the spoon to her mouth and forming her mouth around it. She said, "does she feed herself?" I, being the overprotective mommy I am said, "No, not with a spoon. But she does GREAT with pincers, and feeds herself anything I put in front of her with her hands." (Seriously, like they are really judging me? Come on mommy, relax!) Then she said, "I really think you should let her try to feed herself. Look at how she puts that spoon in her mouth." I looked, in awe of never realizing how well she did seeing how she plays with her spoons ALL THE TIME.

SO of course I came home and wanted to try, but...she fell asleep. Bummer! Gosh, now mommy has to twiddle her thumbs until little sweet pea slept...

Then I heard her upstairs in her bedroom...she was waking up... WHOO HOO!! I hurriedly cooked up some macaroni and cheese and ground some up for her (she can't eat too big of chunks yet), went and got her and saw such a sweet face on her that we just had to take 14 month pictures! (The food was too hot anyways, and I want all my readers just WONDERING what I'm going to share with them today!) So we got the pictures done, and now...feeding time. AND SHE DID GREAT!!! She fed herself 3 different times by herself! Without mommy's guidance. Without mommy saying, "you're too young Grace, I will feed you." Without mommy saying, "no hands Grace. This is mommy's job!" WOW! All the other times, she had her hand on the spoon, but I still did guide it into the bowl, help her scoop, and put it in her mouth, but wow. And not only that, but she ate the entire bowl, which was easily a 1/3 of a cup of ground up mac and cheese!

Ahh, I'm so excited...
elated...
surprised...
HAPPY!!

And in the same instance, I'm sad. Because that just means she needs me less. But I quickly get over that feeling, knowing that there will be 60 more years (at least) that she will need me for whatever reason, and I'll be ready for the call (or just the motherly instinct feeling).


Oh I love those messy hands so much!

Gratitude Challenge Day 4

Today especially, I am so thankful for couches. I've been so sick, and have literally been on the couch all day today. I'm just so glad I was able to conk out on the couch and still be close to Grace. Daddy had stayed home from work today so I could relax which I did all day! I slept pretty much all day, which obviously shows that I needed to regain my sleep. Ahh, sweet couch...so soft and comfy.

Gratitude Challenge Day 3

I am so thankful for my husband. He is so sweet, and he is so patient with me when I'm having a difficult day. Before I was married, I felt like I would never find someone that would care about me, or love me the right way. But then I met him, and 1 1/2 years later, we got married. And now, almost 4 years of marriage, I've found my eternal companion.

What's funny about he and I is that we tend to balance each other out. If I'm really tired, he's awake enough to take on things that I was trying to get finished. If I'm sick, he's healthy, and cares for me so sweetly. And when I get so frustrated about Grace's issues and feel like I'm not helping her at all, he knows exactly what to say to me to help me feel better.

It feels so great to have a man, a partner, that understands me so well. Because sometimes, I don't even understand myself.

Gratitude Challenge Day 2

There is someone in my life that I can be so thankful for, and have to share about her. She is my best friend Ciara, whom I've known since second grade. Gosh that's been a long time! I am just so thankful that she has always been such a supportive friend, and never ceases to share her strong love of life with me. She has such a mothering instinct, and I can remember even from day one how loving she's always been, so nurturing. And now as we continue to grow together, and raise our daughters together, I still see, feel and gratefully accept that continuous love that she has.

I am so thankful my Heavenly Father sent me Ciara to be my friend, and I'm so glad we are still in each others lives, and will be forever on. She teaches me daily how to love stronger, laugh more often, and worry a little less each day. I love you Ciara!

2010 Gratitude Challenge

Well, I found this on one of the blogs that I'm following and think it's a really great idea, so I'm going to follow along with it. Every day, you are to write about something that you are grateful for, and try really hard to write EVERY day!

For my first day of November, I would have to say that I'm grateful for Grace. I'm grateful for my beautiful daughter that means the absolute world to me. I'm thankful that I became her mommy on September 2, 2009. She has already taught me so many lessons about patience, strength, happiness, and faith. I love you Grace.

EEG Experience

So today was the new experience that I was kinda waiting for by not really. I had Grace out of bed at 3:15 am, and I am so lucky to have such a great little girl because she woke up smiling and ready to play with me. Around 7 am she was so tired that she fell asleep standing in her exersaucer, but I quickly woke her and tried to engage with her. Finally 8:30 am came and we hit he road. I was so worried about her sleeping that I kept singing really loud in the truck and passing her stuff to keep her occupied. We quickly made it through the maze of the hospital, which was fairly uncomplicated actually, and when I walked up to the secretary she said "Oh this must be Grace for her EEG?" Ah, no need to pull out her medical card or the debit card. How nice.

So keeping her occupied was a bit...difficult...just because she was so interested in what the technician was doing, but we succeeded. I was constantly reminded, "if you allow her to move her head before I'm done and the wires move, the test is botched and we're done. So DON'T let her move her head." Hmm...ok? Now I'm stressed! At the end of the placements of the wires Grace got a bit wiggly, so in went the bottle into her mouth and I sang to her.

It's amazing what you notice about your child when you are thrown into different situations. It's especially interesting to see what you learn when those situations force you to calm down, to stop, and to relax. I was singing to her, stroking her head, and feeding her her bottle...wow Grace...what amazing blue eyes you have. Did I really make this child? I could see the veins in her eyes from when she was fussing. The delicate and barely noticeable red veins that transport the precious blood to her eyes. How intricate.

Oh my darling Grace, when you dream your entire body dreams, not just her mind. Your eyes see the dream, and your legs and hands feel the dream as they twitched beside your body, as though you weren't really sleeping. Your deep breath soothed even my stress, and took me into a deep thought, seeing you so peaceful in your dream. I wondered what you dreamed about...were we on a beautiful hill with the grass swaying in the breeze? Were we in our sun dresses laying near the edge of the hill, and looking over the rest of the quiet hills as the birds chirped and the dear grazed? Or were we at the ocean? Sitting on the sand with our feet dug into the sand, our toes hidden beneath the warm sand. Your hands are twitching...are you trying to grab the shell partially hidden beside you? You relax...did I just stroke your head in your dream? Did I just laugh because I love seeing you experience life, and that laugh hugged your heart?

You are beautiful, my child. I love you so much. I love the experience I got to have today watching you sleep. I love that you continue to show me new things, and continue to show me your strengths.

Oh, what a day. What a wonderful day. Not only did we have a good morning, but we had a good testing session, and to top it off, Brad came by to surprise me before he headed to work. I love him so much!

Happy Halloween...the best Halloween EVER!

So even though our church had a Halloween Party and we went there, I still wanted to take Grace trick-or-treating, especially since Daddy was home. So I went as a Hippie, and Grace was Pooh Bear! Grace's older step-sister was a Band Nerd, and Daddy was the "Official Stroller Pusher." Gosh this was such an amazing day. And not just because of all the tons of candy that we got, or because of how many compliments we got about cute Grace, but the "best Halloween Ever" came after we got home....because... drum roll please...

SHE CRAWLED!!! BY HERSELF!!! I couldn't believe it! She was at her candy pile, and wanted to go see big sisters, so she got on her hand and knees and CRAWLED!!! She was super wobbly and it was SO beautiful to see because she worked so hard doing it! Ahh...I love life. Back and forth she went crawling. Of course she went to her belly at times to do the inchworm, but I don't care. She crawled, and while on hands and knees, she would lift one hand up to grab at the candy.

But that's not the only thing............

She got up to sitting by herself!!! She would lay on her stomach, and use her hands to push herself up from the side and all the way to sitting! Wonderful!! I don't know how much more excitement I can handle, but because I don't ever want to forget, here's the video's to keep the memory in my mind FOREVER!