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!

Pumpkin Patch Trip

Oh the holidays, don't you just love them? I especially like them because they are so aesthetically pleasing, and because it gives Grace something completely new to experience that she doesn't see on a daily basis. And what better way to enjoy the Halloween/Fall holiday than to go to the pumpkin patch?! And what's better?! Daddy got to go too!

It was such a beautiful day, and on top of it all, Grace was in a wonderful mood. Daddy was feeling better, as he had been sick the days before this trip, and so it was just a wonderful day. I just couldn't believe how many pumpkins there were!


There's Grace, staking claim on her pumpkin by standing on it!! Don't you just love the cute sunglasses! This was the longest in quite a while that she's kept those glasses on!


What a beautiful expression she had here :) It was fun putting Grace around all the big pumpkins and seeing how she "measured up" to them. All in all, a great day. But it wasn't over...water therapy after that!

San Francisco

I know it's a late post, but that's ok :) I just had to share the cute pictures of Grace!

So we had to go down to San Francisco to get Daddy's passport so he could travel for work, which was a big bummer in the beginning because Grace's water therapy was on the same day, but in the end, it was a trip worth going on. My favorite time was eating because Grace was acting SO CUTE while we were in the restaurant.




I love when she plays Peek-A-Boo with me!! And what's more is that she starts the game rather than me starting and her mimicking. What a sweetie!

When we were about to leave, a very nice older man that was sitting at a table next to us saw how happy and how much fun we were having and stood up saying, "Here, I will take your picture. The three of you." How sweet of him to do that without us asking! I was pretty happy to get a family picture for the memory books.

Having daddy back

Well I am happy to say that Daddy is back home. He was in the UK for two weeks for business, and it was obvious Grace could tell. Her attitude was different, she was alot fussier...I think she was just missing her Daddy. Every night, we would look at his picture, say "daddy" and I would tell her that Daddy loves her and she would smile really big and sometimes talk, or blow kisses. I wouldn't be surprised if her difference didn't also come from her seizures that I'm 95% sure she had. So on top of the seizures and Daddy being gone, she was way off! Mommy had a day of losing it that involved crying, chest pains, stomah upset, the whole shebang (which I was told later was a panic attack) but after I had my home teachers come over and give me a blessing, I was better.

It's crazy to see how much Daddy really helps around with Grace. With him being gone I was the doer of all, whether I wanted to be or not. His being gone really puts into perspective how important it is to have your spouse, your partner. Not only is the physical, emotional, and friend aspect of it super important, if not the most important...but having your right hand man there is pretty important too!

Life has already been smoother with Daddy here, and he's only been here 12 hours! Life can now get back to normal...or at least as normal as I hope if could be...

We have an IFSP meeting on Tuesday to change/add some things to Grace's plan...I want her to start vision therapy, as well as speech therapy. I already know thye won't approve the speech because they say she's right on for her age group, but I've been told the vision therapy should start in November. I am also going to ask about getting some sort of Gait Trainer or Creeper Trainer to help with training her on walking and crawling. Yes, you can say I'm being too pushy, or I'm expecting too much of her too quickly...but based off of milestones...yeah yeah I know...

Bath Time workout...or so I thought

So, I thought it would be a good idea to take a bath with Grace tonight so we could work on her Water Therapy workout. I usually don't bathe with her because I like my privacy, but heh, whatever!

So we worked on the workout for a bit, but it was difficult because we didn't have weights for her legs, so she kept floating around. She did well reaching for the foam letters on the side of the bath tub, and standing in the water when we had a chance to get her standing...

But then...

The feared thing to see in the tub with you and your child...the floating logs! Uh OH!! SO for a whole 20 minutes we made it through a bath, but it was quickly ended with these :) But regardless, she did well. Maybe we will buy some weights for her legs, and I will work on the outside of the tub from now on!

Grace, my lovely Daughter

Sometimes, I get so frustrated. I get upset because she's not normal, or because she's not hitting all her milestones like she should. But I am SO HAPPY to have her. When I have my bad days (which my bipolar doesn't help) I get so upset because of all the extra things that I have to deal with. But when I get back to my normal self, I realize how much I regret what I've said or thought. And I'm glad that Grace is such a wonderful daughter, and is so forgiving. Me, Daddy, and Grace are learning how to deal with this as the days go on, and I'm learning how to be a better mother as the nights go on when she's in bed. I look online to see what there is that I can do for her to help her with therapy, or what we can do around the house to stimulate her brain and get her in an aesthetically pleasing place. I am so glad that she's my daughter, and I'm so glad she was made as perfectly as she has been! I know, and can say with 100% belief, that I get so upset, and I say what I do, because I feel so inadequate to help her. I feel like I'm trying so hard, but not hard enough, and I'm so scared that I'm going to mess her up somehow. So all the anger I feel, and all the disappointment I feel, it's all aimed towards me. But it's not always shown that way...But that's the truth. I feel like I should be so much better. But I'm learning. And I've done so much better with her being 13 months than when she was at 4 or 5 months and going through the witching hours.

I love this girl so much!!! I can't stop saying it :) And my temper will get better. It comes out when I feel like I'm not doing my best, and that will change. Because she is my everything. And she is Daddy's everything. I am learning everyday, just like she is. And I will be the perfect parent for her, because that's what she deserves. I will change myself for you Grace, because you deserve it! I will do my best for you Grace, and then do even better than that!

Water Therapy

Grace had her first water therapy on Thursday, and I was so excited to finally be starting her in that warm pool! Of course, I got her there 15 minutes late...I really have felt like the world doesn't want me to get her there. I n all actuality, this was her second session, because the first one was just an "on land" session to see where Grace's strengths and weaknesses were. Anyways, I rushed her into her super cute bathing suit and got her into the arms of her new therapist, and I sat back and watched. I loved watching Grace in the water, weightless and free to move her arms and legs how she wanted. The therapist put some weights on her legs so they would stay down and the first thing they worked on was just floating around on a kick board to get used to the water. After this, Grace was supposed to stand up on the kick board to work on her balance, but she was so against standing on it! If she could have, she would have put her foot down and said, "no!" But she was able to stand on the stairs, which was pretty good.

After this, the pair worked on the ramp with taking steps, and with just the therapist moving Grace's hips from one side to another, Grace was able to take the steps she was supposed to! I love watching Grace's movements to the side to go get the foam letters that were stuck a ways down the pool wall...it was like seeing an angel among me.

Riding the horsey...well, the foam horsey! This was the next thing, and Grace was so curious about this horsey! She straddled the foam floaty and the therapist would bob her up and down, and this was another way for Grace to work on her balance. She was supposed to hold on to the front, but she was kinda nervous, so she would hold on for a couple seconds and then let go. But she did so good!! Up and down, up and down. My big girl doing so well in the water. I think the greatest thing was that she did it without me having to be there right next to her. She was okay being with another person that she didn't really know, working on hard things for her little body!

Last for the day was to work on the floating mats. This was the toughest thing for Grace, and she showed her dislike for it. But the therapist knew this would happen, so that's why she waited till the end. This was where the sitting up and balancing, as well as getting up and down from sitting to both sides was worked on. Grace did show her disapproval, but still worked hard :)

Ahh...I was so happy watching Grace in the pool. It was so hot inside because it was a heated pool, and it was a hot day, but right when I saw Grace, right when I saw her legs stepping like they should, everything but my love and happiness was on my mind. Every so often, I would glance around at everyone else...I saw a parent who was so enveloped in her talk with her other two people she was with that she didn't see her about 6 year old daughter with Cerebral Palsy glancing over all the time to see Mommy being happy for her, cheering for her, clapping. I was right at the edge of the pool. I was so glad to be going through this with Grace, being there for her. I was so thrilled I could show her my happiness, that I could smile, and clap, and "WOO HOO" if I felt like it! If I had gotten any closer, I'd have fallen into the pool! And I could have gotten in with them, but wanted her to be able to focus with her therapist. Oh, my love :) She's so wonderful!

Seizures

Well, yesterday was a new experience. Grace had what I thought was a cluster of seizures at around 6:30 pm, so I called into the ER and they said to bring her in to check her out. She had a fever (100.8) and she was really different the entire day, and didn't eat much at all. Then, while she was in her exersaucer, she started looking like she'd eaten a lemon, her arms went tight, the teeth clenched, and she just stared and kinda shook. During this time, she wouldn't breathe, and they lasted about 5 seconds, with 15 second increments in between. This went on for about 3 minutes. So in we went. Of course, the ER doctor couldn't say they were seizures 100% because she didn't see it happen, but she said it sounds like they were atypical seizures, and talked to a pediatric neurologist. We were referred to her, and so she will be calling sometime today so we can schedule an EEG. The ER doctor also took some of Grace's blood and urine so they could check for possible infection, but everything came back normal. We were finally able to come home at 12:30 this morning, buts till, she wouldn't eat. So I just put her to bed, and she woke up this morning around 9. She had Therapy this morning at 9, but she was so out of it, that we just kept everything low key. Kinda went with what she wanted to do. After that, she finally had a 7 ounce bottle, and now she's laying down for an early nap.

Ah. Breath of relief. We are home, she's ok, she's upstairs babbling to herself while she falls asleep, and I'm awaiting the phone call from the Doctor. Am I nervous? Yes. Do I question whether what I saw really was a cluster of seizures? Definitely! But a friend of mine told me to never question myself...that mom knows best. So...deep breath...we will see what the EEG says.

Grace's Busy Day

Well, we knew that today was going to be busy, but really didn't realize just HOW busy it would be! But it was definitely worth it.

In the morning, we went to PALS play group. It was so cute because when we were walking to the door, Grace heard the voice of her Infant Specialist, Miss Allyse, and she pointed right at her and really loud said "OOOOOHHHHH" like a monkey! That's her way of showing she's really excited about what's going on or what she sees. Miss Allyse loved seeing the reaction! While Grace played in the rice table (and no, she didn't eat it...for the first 5 minutes or so!) Brad and I met the vision specialist and I am excited to announce that Grace will be receiving services from her starting up very soon! She also said she will be going to the next appointment that we have with Dr. R for Grace's eyes so she can be an advocate, ask the right questions, things like that!! Hurray! That's just wonderful!

During PALS group, we were supposed to decorate a pumpkin, but Grace was so busy playing elsewhere and Mommy and Daddy were so busy talking that we didn't get a chance to, but we did snag a super bumpy one before it disappeared! We had snack, which Grace did wonderfully eating. She is FINALLY getting more used to eating "big people" food. There is still a lot of struggle with textures like meat or noodles, but she does very well with goldfish crackers, puffs, and chips. Then we had circle time! I was so happy during this time because Grace actually put the scarf up and over her face for the "Who is This?" song/game that they play!! Good girl Grace! Then we sang the goodbye song, and headed home for a quick nap. Then we were off to Warm Water Therapy (WWT).

We got there late...darnit! We got there 15 minutes late, but it actually worked out because she wasn't going to get in the water for the first session anyways! The physical therapist wanted to see what Grace could/couldn't do "on land" first. After discussing things with Daddy while Mommy filled out paperwork, we came together and discussed the "goals" for Grace. The PT wants to work with Grace on standing, cruising, crawling, and...drum roll please......WALKING!!! WOOO WHOOOOO!!!! Some of the homework we got from the session was to work on stretching with Grace, as the PT said her hamstrings are really tight, and her ability to bear weight on her legs without having to lock her knees is really poor.

Shew...water therapy done, next on the list...Harvest Festival! We raced home, hoping to give Grace another good chunk of nap time, but we got home with only 15 minutes to spare before having to leave for the Festival. When I went to wake her up from her super fast cat nap, it was so cute to see that she fell asleep on her chest with her booty up in the air!! CUTE! Ok, off to the Harvest Festival.

This went great! Grace had tons of fun, Mommy and Daddy had tons of fun, and the food (Chevy's) was mmm, mmm good! Grace played a lot of carnival games (with Mommy and Daddy helping) and wone lots of prizes, even a cookie! They took free family pictures so we did that, and then came home, bathed, bottle, then to bed for the little one. All in all, a wonderful day.

Grace's Therapies, Groups, and Workshops

Well, I thought I would list everything that Grace is in because it's just so crazy to keep track of them all!! I actually have so many things going on for her that we had to drop sign Language Group, which is sad because we never actually got to attend it, not even once!

1. Physical Therapy every other Tuesday
2. Infant Specialist every Tuesday
3. Reading Group every Tuesday after Therapy
4. Warm Water Therapy every Thursday
5. Music Group Every Thursday before WWT
6. Planet Gym Time every other Wednesday
7. PALS play group every other Friday
8. Vision Therapy (will be started soon) every Tuesday WOO HOO!!
9. Speech Therapy (started at 18 months) weekly
10. Family counseling (starting soon) weekly

Well, that's all we have so far. Wow. I had no idea there were really that many we were doing. It's really different to see it this way, rather than just seeing a calendar and glancing a day or two ahead. But you know, I'm glad we have all these things going on. I'm glad there are so many things that Grace can be involved in. I must say, it is a lot more difficult since she doesn't walk, or even really crawl, on her own, but we'll get there. I think I am going to start up my own Sign Language group, and will probably hold it on a Friday, as I met someone today at PALS group that has a little one that is hard of hearing, and she said she would love to get involved!

Our most recent update about Grace

So, I talked to Grace's Doctor (whom I will call D). As of this hour, right now (5 pm) there isn't a thought about Grace having another surgery. But by tomorrow, that could be different. D said that the zoom on the two MRI's they are examining are different levels, so the change in fluid could be just the fact that one is zoomed in more than the other. Which, if I have any room to talk, is FREAKING RIDICULOUS because MRI's should be done IN THE SAME ZOOM so they are really showing a difference. Anyways, so she's going to get the two neurosurgeons that are on the case to go over the MRI's with her tonight or tomorrow. Ok, next topic. Weight bearing. She asked me a ton of questions about how well Grace is doing with bearing weight, and when I let her know that G bears weight but with knees locked, she put me on hold to discuss this with the physiatrist that just happened to be walking by. When she got me back on the phone she told me the P is worried that there is weak muscle tone in the legs, which is why Grace is locking her knees. So Grace will be seeing a P on January, if not sooner. This will be better because it won't just be normal PT, but a PT that incorporates bowel/bladder, and all other medical issues that G has. I also told D about the worries I have about Grace's legs below the knees and down because they are starting to bend inward. I am worried, and D reciprocated my feelings, that the lack of using the legs for weight bearing and walking could be causing an issue. But they said to continue on with the crawling rather than trying to start with walking, even though she's 13 months old and mommy is being impatient and just wants her to WALK. Next thing. I discussed with D about the fact that Grace isn't connecting with me. She neither calls me mama nor Brad daddy, she doesn't point to things she wants, she doesn't connect ANY words she says to what they are. She doesn't talk, but only babbles. D wasn't really worried about the brain issues, but now that I've brought it up, she's finally looking into it more. And when we ask Grace a question, it doesn't look like it "clicks" you know? And I told her that, so we are doing more looking into that as well.

All these things that I'm worried about. And of course, there are those people that doesn't want to come around, or bring their kids around because I compare. Yeah, well what do you expect? I want the best for my child. And I expected something, and got something completely different. So I'm jealous, and I'm envious for Grace. I want her to have the abilities that the other children around her do. Especially the children that are younger than her but SO MUCH MORE advanced than her. Get over it. I'm a frustrated mom because there's noting I can do for my child. But wait. Almost every person I've talked to says "we just need to give her time". I'm not good at that! I want the instant gratification NOW! NOW!! NOW!!! I want my 13 month old to be able to do 13 month old things! I don't want her to be suffering...to be lacking. I don't want her to have to struggle! You reading this and thinking I'm in the pity pool? Well whatever. Maybe I am. But I'm upset and frustrated and sad and my hands are tied because there's nothing more I can do to help her succeed faster. All except giving her time to figure it out on her own. If that's even going to happen.

Flashcards

I worked with Grace today on her alphabet flashcards, but more importantly, I worked on the actual animal or character, and paralleled this with the sign for it. She and I worked together for about 20 minutes, and I just couldn't believe how focused she was on what I was doing. I would show her the picture, tell her the work, let her handle the card, and then I would show her the sign. I know that she won't pick up the sign this fast, but am so excited to see how focused she is!! She didn't get distracted, didn't show signs of boredom, and when she was done with a card, she would push it into my hand and grab the next one in the stack! When I get frustrated because she's not up to "norm" she does things like this that just amaze me! For a 13 month old to be able to focus as well as she did was wonderful to see. There were even some times where she would be holding the card, and was super focused on it, and would mouth...well, nothing in particular, but I loved how she was using her lips and her whispering voice! Everyday is just so wonderful working with her!

Pictures of us working together will come...once I find the darn camera!!!

Sleep

Many times, we have been asked how Grace sleeps. It's recently come to my attention that not every child is as good at going to bed as Grace is...I guess I was being naive and thought everyone else did just as well. But from an early age, we taught Grace, or rather she showed us, that she could be put into her bed and she would do the work of putting herself to sleep! Of course, there are the occasional screaming fits due to the witching hour in early months, to teething in the months most recent, but all in all, she's a great sleeper! Her set bedtime is 9:30-anywhere between 6-9 in the morning, and we try to follow that as best we can! But of course, that's not permanent; we tend to fluctuate based off of naps had earlier in the day, and fussiness throughout the early evening. I think what's helped is that there's a routine that Daddy and I have made that are SO IMPORTANT to have!

Around 8 months old, we were religious on giving her baths every night. But with her eczema, we were told by the doctor to space out the days we bathe her, as the hot water and consistent bathing would irritate her skin more. So now we bathe about every other evening now, depending on how dirty she gets. So her last bottle is usually at 8:30-8:45, and then she is bathed, lubed (we put on a Vaseline type goop every night/morning) dressed (she wears just a long sleeve/footed nightie and stays warm enough and doesn't have to fight with a blanket) and then we read books to her for about 15 minutes. It's so fun to read with her, because at around 9 months old she learned how to "turn page" and so we allow her to help with the reading! She LOVES sitting in the rocking chair with mommy or daddy and listening to the stories! It's funny, sometimes I think she's not listening, and so I go to close the book, and she quickly turns the book back to where we were and holds it open! After that we sing a goodnight song to her (I love hear Daddy sing this to her through the monitor because he sings old time songs to her) and then in the bed she goes. We have two mobiles that she listens to, and also have butterflies and stars/clouds (an art project she and I did a while ago) hanging above her bed so she's set!

Sometimes, she rolls around for a few minutes and then goes to sleep. Sometimes, we can hear her playing up there, working out the rest of her energy. And then, sometimes, there are the days that we've waited too long to put her to bed, or that she just DOES NOT want to miss anything!! She will cry anywhere between 5-15 minutes, but we've done really good at waiting her out!!

So, the sleep situation is wonderful. I love that she knows the routine, and that we've made a routine, and I love that, for the most part, she goes down like an angel! And I'm thankful for those nights that she screams, because it lets me know that everything isn't going to be sugar and spice and everything nice. Those nights remind me that Grace isn't an "always". She's not "always" going to go down nicely. She's not "always" going to have a perfect life, without issues. She's not "always" going to eat her meal without spitting it in our face. And she's not "always" going to follow along with the average group for hitting milestones! But one thing that's "always"...she's ALWAYS going to be my little girl, and she's ALWAYS going to be daddy's cutiepie, and we are ALWAYS going to love her and be there for her. ALWAYS.

Isn't it funny what I learned out of her sleeping schedule?! What an awesome and gigantic lesson out of something as little as sleep.

One of those nights that she just FOUGHT sleep...and pulled her nightie off the edge of the crib, hoping it would keep her awake. But in reality, it's what soothed her enough to put her to sleep.

Celebrating Microcephaly Awareness day

Grace and I were happy to celebrate the first Microcephaly Awareness Day that we had just recently heard about!! I'm glad I heard about it until it was too late! I loved being able to match my little girl and take these pictures, and also that I was able to share with some people why we were wearing yellow!

2 Days to go

Well, on Tuesday we will be heading to the doctor to see what they say about her increased amount of fluid in the spine. I am crossing my fingers that it's not going to be another surgery, but I do recall her saying, before this most recent MRI, that if there is more fluid, that would mean another surgery for sure. SO...here's to hoping that by some stroke of luck, the fluid disappears, and Grace's back will be fine! As you can see, Grace is full of cheer and obviously isn't going to let anyone or anything get her down!!