Grace Working with her No-No's

Grace's water therapist let us borrow these to help work with Grace on her wall standing. She's so uncomfortable on her feet without us helping her because she's got the worst balance, so we've had to resort to these so that she can't bend her legs and get down. I know, that's mean! But we want her to realize that she CAN stand up on her own!!

Here's Grace waiting for Mommy to help her up with the No-No's on. I was surprised to see how well she could move around! She actually did some push-ups on her toes!

Doing pushups! She actually got to the sitting position too, as when I put them on her, she was on her back!

Grace working out her legs! We used a toy Zeus to keep her occupied!!
Good girl reaching to the side! That's something we have her do during workout times is to try to shift her weight around.

Lounging with Mommy afterwards. I love cuddling with her, but she's always so busy she doesn't want to cuddle. But this time I got some cuddle time!!



She did pretty good this time! Doesn't last too long, but that's ok. All that matters is that she's up for whatever amount of time her little body can handle. I'm just so glad she tries, and doesn't just throw a fit right from the beginning! Our hopes with this is that she will realize she can stand on her own on the wall and not be scared. If this doesn't work in a while, hm...I don't really know what we will try next. Maybe braces on her legs.

Amanda

To Write Their Names in the Sand

I wish that I never knew what this site was. I wish I never knew what this organization did. But, because I have such a special friend that lost her beautiful daughter, I am thankful that Heavenly Father brought me upon this website. The people in this organization write names in the sand at the beach of children that left this world too early, and they wait to take a picture when the sun is just right on the horizon, and the clouds are magnificent in the air. Little Lillian's name is one of those that will be forever recorded in the sand, with the beauty of the sunset wrapping her name in warm embrace, and the waves of the ocean rolling softly beside. It's amazing to know now that Lilly, just one year old, has now touched the hearts of people living in Australia, and whoever else visits the website and comes upon her picture will be touched by her spirit. I am so thankful for that.

Amanda

Dinner in a Jar...and more

I am so happy that I've been busy getting some more Dinner in a Jars together!! My friend keeps herself busy doing it too, so I've tried to go slow and steady like her :) And it's worked!! I did 4 jars of Refried Bean soup and a homemade recipe for Pasta Soup yesterday, and today I did 2 normal Pasta Soups and am dehydrating 6 trays of eggs! Oh yeah! I am also proud to announce that we went through all our water that we've been collected over the weeks and months, and after refilling all the bottles we calculated all the liters together and have 26 gallons! And that's not including our barrel we have! Slow and steady works!!

Amanda

Grace's Day at Church

Grace had such a great day at church I had to write about it! During Sacrament, she usually gets pretty squirmy and has to get taken out to the lounge to let loose, but she was such a big girl today! She either sat on the pew or stood next to me on the pew, and I was just so proud! She wasn't too loud, flirted with the couple sitting behind us a lot of the time, played with her toys some, drank her cup, and was just an awesome girl! It was like, a whole other side of Grace I haven't seen before! She didn't flail or arch once, didn't fuss, didn't even have to go out of the chapel because of being fussy!

After first hour, we got her diaper changed and another cup of warm water just in case, and we walked around for a little with a friend discussing classrooms that could be used to teach more preparedness classes. Then we sat in Gospel Doctrine, and even though she was a bit more squirmy, she still held herself together really well! had some snacks, about 1/2 her cup, and played between Pam and I throughout! Again, I was amazed! And third hour, she played with her little friends in the front, and I barely had to attend to her. The only time she had an issue was when a friend scratched her and she wailed for a bit, but after going in the hall and composing herself, she and I finished off our 3 hours like champs!! What a blessing it is to have a child so willing and able to act calm and collected at church! I am so proud of her! And of course, her eyes closed right as we were pulling in to the garage...being good wiped her out!

Next week is Nursery week! Her first time ever! I will probably be standing outside the door peeking in every so often! I just love watching her grow...it's amazing to know she's 18 months old in 3 days, that I made her with the help of Brad and Heavenly Father, and that such a little kid can have such a strong hold on my heart!!


Amanda

Hand me Down

I am so excited to share this, because this is a Hand-me-down that means so much to me, especially when I was younger!! I had a very special Pooh Bear stuffed animal that went everywhere with me when I was small!! I'd gotten it when I was 5, and still have it. And today, after a quick bath in the washing machine, he was handed down to Grace!! She was SO excited to see his huge face (it's bigger than her head) and she gave him kisses all over his face!! I held her and she just kept leaning over and kissing him! And when I went in this afternoon to wake her up from nap, she had little round spots on him from her drooling! And then again, this evening, I just laid her down and put him next to her, and she reached over and started playing with his ear. Aw, how sweet!! I'm so glad she likes it, and I hope he will be her buddy in bed so she won't feel alone in her room.

Amanda

Hmm...We need some Sunshine!!

Another day of not so fun times with Grace. She's putting me through the ringer of learning how to console her. Remember how I told you that she's never really been clingy, and is really independent? Well, ever since getting sick, she's needed me! So I'm trying to figure out her likes and dislikes with comfort. It's different for everyone you know? I wish it was the cuddling, holding close stuff she likes! But I'm kinda figuring out she likes to just be close, but not too close! So holding her while I walk around is good for her. Silly girly. I think she's teething too! Shew!! We've almost got a full mouthful!! I think I see two more coming in the front bottom, so I'm excited, because then she will have all the bottom teeth! Hurray! So teething tablets, soft foods and lots of love from Mommy! It's so cute because she doesn't want Daddy! I go for a potty break and she breaks down like she had her favorite toy taken from her!!! Aw, feel the love!

Amanda

Grace's Health

We are doing a bit better today, except a bit unbalanced because of the double ear infection! This evening about 2 hours before bedtime we could NOT console her at all! No food, bottle, fun, bath or anything would help her. But...we quickly figured out what she needed to do....and after emptying her stomach a good 5 times, she was as happy as a clam! I was freaking, but was loving that she just wanted all Mommy! I had to let her go to change her clothes from the first time she emptied her tummy and she reached for me SO much! It was sad but I'm glad she knows I'm here to console her, and that made me happy! She's now in bed. Went right down without an issue, and will hopefully be ok tonight!

Amanda

Stair Climbing

Grace can officially go up and down the stairs by herself! I can't believe how fast she is too! It's so funny because when we work with her, she takes her time :) But when she wants to do it because SHE wants to do it, she zooms up those steps!!

Oh, and she climbed up and down the stairs at the park for the FIRST TIME EVER!!! I was so happy yesterday when I saw her do it!


Amanda

Therapy

Just a quick note. We've canceled therapy for now until little Grace feels better. We are just going with the flow :) Thank you to all the friends that have helped us through this yucky time! We were able to play at the park for a little while with a friend and her son, so that was nice to get out and warm up with the suns help!

Amanda

Temples...and More

I am so glad Brad and I are able to go to the temple together :) And whats even better now is that he's able to work from home, which means we can go EVERY WEEK like we want to!! YES!!! Of course, we are feeling blue now, but once we get free and clear from whatever the yuck is we have, off we go...TOGETHER!!! I think we will make it a date each time! Too bad we can't take our kids with us though, I would like that. I think Grace would enjoy going there, though she wouldn't understand. I think this will be really important for Grace to grow up seeing, is her daddy and mommy able to go do work in the Temple, which will forever strengthen the bond between each of them, and with their Heavenly Father too!

I think, well I know actually...another thing I'm looking forward to is being able to work with Grace through Duty to God and her Personal Progress. I know, a bit in the future, but I'm just SO excited!! I remember telling Brad all the time before we knew we were having a baby that I would love working with it (him or her) through their little cub scouts or merit badges, or taking her to girls camp and fun Tuesday night activities!

Amanda

Update, Yet again...

So Grace has a double ear infection and the doctor swabbed her for Flu/RSV. We will get the results tomorrow of the swab. She was up this morning at 1, 2 and 5 am and had bottles each time. I'm just glad she's still willing to drink, because fluids are essential for this little one. She has had one tiny bowel movement in 1 week, and that's because we've been so sick we've totally forgot about the darn miralax. So probably looking at another clean-out for her.

Amanda

Grace's Health

Grace isn't doing very good...I was worried she might get what I have, and I'm thinking she has. Her coughs are getting a lot worse, and today she actually fell asleep in her high chair while she was eating, which does NOT happen!! So she's got a doctor appointment tomorrow, and hopefully they can get her on some antibiotics or something. We are like a sick house! All four of us are sick.

Amanda

Mommy

I have bronchitis. If the medication doesn't help in 5 days, I have to get a chest x-ray. The rest of the family has started coughing, so I'm hoping I haven't shared my yuck with everyone else...

I am so lucky to have such wonderful friends. I went to church but was not feeling well at all, so my good friend Pam followed me home and took Grace back with her while Brad and I rested and called the doctor. We picked her up and she went down for nap, so I did too. Seriously, Brad and I have slept 95% of the day! We both feel so yucky, but mine is much worse as I let it progress too long before doing anything about it. Then Pam brought over lasagna for dinner and did cleaned my kitchen for me! (I got up to get the door and took a basket of laundry upstairs, and by the time I got back downstairs, I felt the elephant standing on my chest again). She is such a sweetie. She also took some of my shirts that need ironing :) And tomorrow, another friend will be bringing dinner to us. I love my friends. And Grace has coped pretty well. It's like she understood mommy wasn't feeling well. I was camped out on the couch all day, and she would come visit, then go off and play. Daddy took over care for her, so all I had to do was kiss her goodnight, and she's tucked into bed already. Sweet girl. I've started my medication, so hopefully it will help. The doctor also gave me an inhaler, but said it might make me feel "high" and give me an adrenaline rush (heart racing, me feeling like I've got tons of energy) so I'm holding off on that till I really need it. I'm cooking the brownies that Pam brought over, and sweet Brad went to get me powdered donuts (I know, I'm craving like I'm pregnant! Which I'm not) so I will be loaded with yummy goodness this evening. I sure hope this doesn't get passed to Grace, as she's been coughing a lot more today (same with Kailyn). And Grace's IFSP meeting is Tuesday, so I don't know if I'm still contagious after I take the meds? I will probably cancel her therapies, but not that meeting. And I was supposed to go to the Temple with Pam on Wednesday while another friend is watching Grace, but I don't think I can make it to the Temple feeling like this. But the friend still offered to watch Grace so I can rest, so I will definitely take her up on it! I need to let people help, which I'm NOT good at! It was hard just sitting there while Pam cleaned my kitchen. But I am so blessed with good friends... :)


Amanda

Grace's Pajamas

This is definitely my favorite fabric! It was so hard for me to cut into it, but I couldn't just have it sitting there not getting used! Guess when I made this??? This morning! I was up from 12-3 am working on these! I don't know why I stayed up so long...I was just gonna cut the pattern out, then go to bed. Then I was just gonna pin it, then go to bed...and so on! The shirt alone took 2 hours because it was pretty complicating for me. It was my first time working with this pattern.
The above picture shows the pants after I brought it down a bit to fit Grace.
See the waist before?? Look how high it is!
This is the back of the shirt. It had a hole in it, so I had to make a gather to hide the hole.

The front of the shirt. It SHOULD NOT have the pleats, but I totally messed up there, and had to figure some way of making it cute. I'm hoping the next pajama set will look better.

I love this fabric. It was hard for me to make her an outfit because she's gonna grow out of it, and then not use it. But it will go in her memory box. I will be keeping Every single thing I make her, so she can see them when she grows up :) And this is way too big for her to wear now, but if I end up having her wear it, then I will probably put some elastic somewhere to help it fit more. :) I still have to put elastic in the waist and hem the bottoms of the legs, but otherwise, it's done!


Amanda

Dinner in a Jar

Today was a fun day :) I went to the church building to help my friend Pam with a Dinner in a Jar Stake wide class she was having! There were about 50 people there, and Grace got to tag along and see everyone! I was helping out portioning out the rice into the jars, and holding Grace on my left hip while doing so :) It was fun to have her wave to the ladies as they walked by! I was so happy to see my other friend Keri, who was so sweet to take Grace for me so I could be more useful! She played with Grace while I moved on to the dehydrated onions and carrots, and about 45 minutes later, all was done! It was like an assembly line. What fun! By this point, Grace was getting sleepy, so Keri and I sat on the floor with her for awhile playing and talking. I took Grace home and went to the cemetery with Keri, and enjoyed chatting with her, sharing some tears (I know, I'm a water fountain!) and am now home. Grace is down for the count, I've got pork roasting in the crock pot, and will be putting the finishing touches on Grace's pajama set I made last night! Or actually...this morning. But I will have a post about that separately! Fun stuff!


Amanda

Pals Play Day

Today Grace had fun! Even though there weren't any other kids that she could interact with, she was fine just being on her own. She had a chance to play at the rice table, but sadly, she couldn't keep it out of her mouth so I sent her away! But she didn't care!!



This was the first time I've really seen her pull something from the shelf and play with it for an extended period of time without me prompting her to continue. I loved watching her try to figure out how to get the toys out of there!

Another thing I thoroughly enjoyed watching Grace do is climb the stairs like a pro! I couldn't believe how quick she was! These stairs are about half the size of normal stairs, so it makes sense that she would be so fast :)

Today during snack we showed off how she knows how to use a big girl cup! That means no sippy spout, no nipple, no nothing! Just two handed, open mouthed drinking! And she did great! I didn't even have to have my hands on the cup or anything. The therapists that were there today were extremely surprised. She also worked with her spoon, but I had to help her with that. It's just tough for her to scoop, but she definitely knows how to work the spoon!(Of course I didn't get a picture OR video!!! You'll just have to trust me! She also eats off a plate now too! She's got a super cute pink plate with two love birds on it and hearts)

I got a lot of props today (compliments) about how well I'm doing with Grace. They love that even though she's so young, I'm giving her warnings when necessary, and then following through. "Grace, if you eat the rice, you will be excused from the rice table." She eats the rice. "Ok, it's time to find something else to do." And I move her away. She might not understand at this point, but she's realizing I'm not giving in, so that's good. They also liked that I'm so good at keeping her on a schedule, teaching her sign language, and am just so in tune with her. Props to my college education and childcare background!! (I was 10 classes away from a BA in Liberal Studies, 5 classes away from a Deaf Studies Minor, and have worked in childcare for the past 5 years!)

I love this little girl!! See that orange thing in her hand? It's a rattle, and she LOVES rattles!!! She found this amongst her toys and didn't let it go!
Look at my big girl!! She opened the lid on her own (it wasn't snapped), and was able to get into this position without my help! YES!!!

Doesn't she look so cute with her hat on? She didn't really like it though because the therapist accidentally snapped the neck string under her chin! OUCH! But she got over it enough to wear it for a second for me.
And I really mean she just wore it for a SECOND! There's her orange rattle in her hand! I've also noticed the right hand dominance has gone away a bit, but her left leg still lags behind a little. But I'm giving her time. I think once she starts walking better, she'll be fine.


Amanda

Grace's Thursday Therapy

Grace did pretty good today. She didn't walk with the walker, and I was super bummed about it. I didn't ask for her to walk in it, the therapist didn't offer, so it just went unsaid. Darn.

So we started off on the treadmill today. Grace was super excited about getting on it, and didn't fuss at all this time. She walked for 16 1/2 minutes this time, which was 2 minutes more than yesterday. After that, she was actually so upset she was done that she burst out crying and arching!!! I couldn't believe it! Elaina (the therapist) sat her up and calmed her down and said, "we are all done" and Grace shook her head no! And then did it again!! HA HA HA HA!! Silly girl! Then she pointed at the treadmill and Elaina said, "no, we'll do that again next week." And she started fussing, so mommy had to step in. All it took was a "no, Grace. We will do that next week. Stop." And she was over it :) Good girl.

After that they worked on standing on Elaina's legs and weight shifting. She did so great! They did that for about 5 minutes, and Elaina's hands were just on Grace's waist, so I was so happy! Elaina was rocking left and right pretty well too. But Grace started fussing, so we quickly moved on to the next thing.

We worked on Grace standing at a high bench. It was about at our chests when we were sitting on our bum, so it was about her chest when she was standing. She didn't like this much at all, nothing new though. So we got the DVD player for her since it's portable. That was making it a bit easier though. By this point though, we had about 10 minutes left of our session, and Grace hadn't napped, so she was getting REALLY fussy. Her fussy arching, crying, hands covering face. But that's ok :) She did so well. So Elaina had her just walk over to me, and we were done for the day. I got Grace's notes (we get one after every therapy session), and then by the time she was locked in the truck, she was asleep. Hard workin' girly.


They also worked on sitting for a while :) She did pretty good, but got tired pretty fast and was fussy as all get out :)


We got to keep her no-no's for her legs for this next week. I'm gonna use them as much as she will let me so she'll see that she can stand up straight. Hope they will help.


Amanda

A better Update

Grace is doing so well. I can't believe that this little girl is making such leaps and bounds. Can you imagine that she'd know how to drink out of a real cup without mommy's help? Well, she can. It was her first time yesterday, and she did great!! She loved knowing that she controlled the flow of fluid that ran into her mouth! In the beginning, she kept putting the cup to her mouth without tipping it up, just expecting the fluid to be there. It was so cute :) I had to show her, "here, tip it up a little." So sweet :) I borrowed from small cups from my grandma and it was a perfect size for Grace! Grace looked at me in utter amazement when she realized she had moved the liquid and drank the water without mommy helping! She's growing up so fast!

We've been dealing with a clean out of Grace's, so we're changing diapers every 10 minutes again. I can easily say that it's really tiring to do that, both for my physically and my wallet too. Diapers aren't cheap, and for her to run through them so fast is depressing! I will say I'm glad she's cleaning out, but do I wish we were able to use cloth? Yes. It'd be cheaper...just a lot messier.

I talked with Grace's therapist yesterday about Grace trying out a walker (since I saw one her perfect size). Her therapist said, "yeah, we could try it, because I know for certain she will be able to do it. But I won't loan one out to you." Crap. I just want my kid to walk. And at this point I really feel like the therapists are the ones holding her back. She will get confident enough with the walker, and then we can wean her. That's the path I want to take. But for some reason, what the parent wants isn't what matters. Did you notice I said "parent" and not "parents". Brad wants to give her her time to grow into walking. Yet he doesn't see the stares at church from people wondering why she still crawls, or feeling bad because she can't go run with the kids down the hall. I know there's tons of other parents out there in the same situation (their kid not walking when they should) and they are handling it fine, but I'm not! For the most part I'm okay with it. But if I think too much about her age and that she's not walking, and that we will be going to Montana soon and might still be crawling, I get.... worried?? I don't even know what I'm feeling, but just know I'm feeling something! I know it's not Grace's fault. It's a challenge Heavenly Father gave her with being born with the gene deletion and the brain issues, but that doesn't mean it's any easier. And even if Grace was just being lazy, I wouldn't blame her. Because really, a kid doesn't know how to be lazy at this age!!! She wants to go go go, I can see it in her. She struggles so much with her confidence of standing, and stepping/walking with me, I can totally see that she just doesn't trust the body she's been given. So why not give her a tool she can trust (the walker) rather than her continue to be scared? I could go on about this forever. I wish I could just put my foot down, knowing that 100% it won't effect her later that we've given her the walker now. But I don't know. I don't want people saying "I told you so" when Grace doesn't trust her body later as we try to wean her from a walker. This is all just so confusing, and takes patience (which obviously, I don't have). Right at this point, the idea of my daughter being on her feet mobile is more important to me than what "might" happen in the future.

I guess I better move on from that or my post will be super long. Grace has started drinking Lactaid milk today. We are going to see how she does with that, since cows milk gives her diarrhea. I'm really hoping this will work out for her since she loves milk so much!

So Grace's doctor said the runny nose/ nasty cough could last for another 2 weeks. He said the cold just needs to run it's course, and there's nothing we can do about it. So his assumption is that she got a cold, and then an ear infection, so she had two things at once rather than the ear infection causing the nose/cough. Hopefully it goes away before her going into Nursery!

Grace signed a two word sentence! I couldn't believe it! She's actually signed a sentence before saying it! We were working with her therapist and playing with the baby (actually, it was a jack in the box clown, but we were calling it baby) and she signed "more baby". WOW!!! I was so ecstatic! Of course, there's the huge fear settling into my mind (seriously, it's like a huge cloud looming over me) that she's relying TOO much on her signing, and not vocalizing what she wants to say. And since Brad's voiced some concern about it as well, I'm now wondering what the future will hold with her. Whether she will be a chosen mute (not completely since she does babble) or that she will learn to use both her voice and her sign 50/50. It's so dumb, you know? All these things that you can't do anything about because it's the future when you will know if there's a problem or not, yet I have to worry about them now because we might have to change the now so the future won't be more difficult. When I was pregnant, I worried about if I would be a good mom, and would I be able to teach her to wean from a bottle appropriately (at the right age) and how will I teach her everything? And now, my worries are, "why is she still drinking a bottle at 17 almost 18 months?" And, "is there any other way in the universe that I can show Grace to trust her body and just WALK without having to use a walker?" and "is she gonna have surgery to fix her bowels, or will we forever have her in diapers? Do they even make diapers that big?"

I know that she's got all these medical issues...I understand that. But really. Is there something that I could have been doing better? Should I have breastfed her longer? Should I have eaten better while carrying her? Or not worked full time like I did up until birth day? Should I have done more therapy work with her throughout the weeks? Should I have pushed her more, and would that have helped her succeed further than where she's at? I wonder where she would be if she didn't have all these medical issues? I wonder where she would be if she would have had therapy earlier?

Ug...Whatever. Questions that forever swim in my head.


Amanda

Mommy is so sick...

I feel so bad because all I want to do today is stay in bed...I've lost my voice from my throat being so sore...now I can only whisper to Grace. She's got therapy today, and somehow I'm gonna have to get her there feeling like this, and not freak her therapist out with how bad I sound! Ug...I just want to be healthy and for Grace to be healthy and all is well. We will be trying out a walker today in Grace's therapy session...oh, and I'm not pregnant! Thank goodness!

Amanda

Grace's Water Therapy

Just a quick note tonight because its my turn to put the babe to bed...yeah, it's WAY late for her to be going down.

Anyways, during therapy today (we did indoor therapy today) she walked for 14 1/2 minutes on the treadmill!!!!! WOW!!! Awesome!! And after that, we worked on standing up while holding onto a bungee cord that was horizontal to her vertical. She would put too much weight on it and fall forward but there were a few seconds that she actually stood by herself, kinda like an old woman crooked forward :) We put no-no's on her legs, which are braces that make it to where she can't bend and sit down (since she needs to start strengthening her balance. After that, we worked on sitting in a normal chair since she will be going to nursery in two weeks, and will need to know how to balance in one of the normal chairs (not the cube chairs). So all in all, a great day! This was a makeup day, so we will be going back tomorrow.


Amanda

When it Rains, it Pours

So Grace has been sick with a clogged nose for 2 month, and the past few weeks she's had a nasty phlegmy cough. Now, about 6 days ago we learned she had an ear infection and since then, has been on antibiotics. And now I'm sick. Super sore throat, cough, runny/stuffy nose (I know, how can it be runny but then stuffy too?), super raspy voice and whenever I swallow I get sharp pains in my throat. Great. And on top of it all, the hubby has jury duty and we only have one vehicle, so now I have to work my schedule around his so I can get him there and back every night. Grace has a make up therapy session tomorrow (water) so we are going to be up early to get Brad to jury duty, then to water therapy, then home, then back to get Brad, then home. And then Thursday (hopefully he won't be needed for duty) it will be tricky too because she's got therapy so late in the day. I feel yucky. The house has been neglected (once again) because my energy has been lacking immensely, and it drains so fast. My lack of sleep is catching up to me (getting to bed at 1 am is kicking my butt) and my bored eating is catching up as well. It's weird because I constantly eat from about 6-11 pm, but haven't gained any weight...yet I've gained mass. So I guess I'm losing muscle. Hm... I don't know. I took a pregnancy test today because I've been really nauseous the past few weeks, but the thing was so old it didn't read. Guess I better buy some more. Do I want to be pregnant? Wouldn't mind. If I was would I be totally freaked that something might go wrong? Heck yes!!!! Do I think I can handle having another child right now, or anytime in the near (6-7 yrs) future? No. I doubt I am...but the nausea is de ja vu from my last pregnancy. In exactly two weeks, Grace will be 18 months old, which means there will be at least one more therapy thrown into the mix; speech therapy. And I'm really hoping for some more aggressive physical therapy. I can't believe how old she's getting, or how fast the time is going, or how many things I've forgotten to write down because I'm so busy trying to keep up with things I should be doing! Really, I feel like my brain is shutting down sometimes!! I'm glad my head is screwed on, cuz I'd probably forget it if I didn't.

Today Grace walked for a couple steps while holding onto just one of my hands. It was a super whiny episode, with lots of arching, whining, mad faces, trying to fall to the ground, but she did it. I also saw Ciara's baby today. She walked from the truck to the house. Good job Andrea. I tried tried tried to be proud. To be happy. To act happy and proud and surprised. I have heard somewhere that if you don't feel something (like happy), then fake it. Soon, you will fake it enough that you start to believe it. So that's what I did. And in the end, it worked. But it was hard after she left and I really thought about it. She's 14 months. Whatever. Every baby goes at their own pace. A couple days ago...maybe even today, I don't remember...Brad said, "this is when I get upset she's not walking." (He was taking her out back to play with the chickens) "It would be nice if she could just walk around, if I could put her down and she could just go. But I can't, because she'd crawl all through their poop." I know. He's right, it sucks. I feel like just stopping the whole "holding her" thing and just making her crawl wherever we go, and maybe she will figure out she's gotta walk in order to get anywhere. I mean, we are doing all the right things. We aren't coddling her, aren't holding her behind, aren't making it easy on her. If she wants to eat, she has to sign it to us, crawl to her high chair, stand up at her high chair, and sign up before we put her in it. We make her crawl to us if she wants us to pick her up, and we make her stand up in her crib before we pick her up. She has to crawl over to the side of the tub and stand up before we get her out, and just recently she's learned "out" (saying it) so we wait till she says that too. If she wants to go outside, we keep playing the mimic game with her until she finally says "Daddy out" (it's not that same sentence though). She's never said mommy to me. Like she knows who I am. When we ask her, "where's mommy?" she signs "dog." Hmm...how did those two things get twisted? Oh well. Not that big of a deal!

So obviously, my not feeling well at all and her lag is saddening to me today. But tomorrow is a new day and I guess I'll build a bridge and get over it. A mama can have a sad day without everyone thinking I'm the worst parent in the world and don't deserve her. Because people that think that need to stick their feet in their mouth as they don't have any experience pertaining to a special needs child. If you're wondering where that little spout off came from, it's from a situation I had a while ago with someone telling me I'm a screw up as a mom and that Grace will grow up to hate me. Sticks and stones people, sticks and stones. And in the end, the thoughts and opinions of people like them don't mean diddly squat to me :) How do you like THEM cherries???!!!

Off to bed...it's 11:45 pm, but I guess that's better than 1 am. We'll just see how long it takes me to fall asleep...

If I could ask for something? It'd be a girls day out with an adult girl friend. Maybe even someone to come do some ironing while I do some laundry. Someone to sit in Grace's room with me and look at all the cute clothes, and maybe every once in a while help hang something (Her room is a disaster area. It looks like a tornado went through it.) I don't know :)

Amanda

Grace's Story

I have been asked to share Grace's story in a book that a fellow LDS member is writing. I'm so excited! But I'm also a bit overwhelmed with all the details. I guess overwhelmed isn't the right word...I'm just super busy figuring out what I want in there, what's not too important, and making sure it's not the size of a book itself! But I feel so blessed that I'd be able to have a way to get Grace's story out there, and maybe help someone who might have a child like me. I've been planning on writing my own book, because if you couldn't tell, I LOVE updating the blog! I've always wanted to be an author. So this is a good start. I mean, I'm not writing the book, but just a piece of my story will be there, and that's a wonderful opportunity!


Amanda

Grace's Therapy

Today Grace met with her Communication Specialist and she was so excited to see her! She wasn't able to come last week because of Grace being sick. her therapist was so happy that Grace has learned the signs "baby" and "book" and I didn't even remember to tell her she also knows how to play Peek-a-boo!!! DUH! Today they played with books and a doll so Grace could practice those signs, but the majority of the time was spent drawing with markers!!! Grace LOVED IT!! And her imitation was so good. Her therapist was so surprised at how well Grace was able to imitate her drawing up/down, side/side, and in circles! I was also surprised to see how well she was able to pick up the marker and draw with it! It was so sweet because in the beginning of the drawing project, Grace laid on her stomach and was drawing (how cute!). Then after that, she sat right on the huge piece of butcher paper and continued to draw. And she did a really good circle by herself! Nearing the end of the session, LeeSee (the therapist, Allyse) pulled out some stickers, and once again was so surprised at how well Grace was able to peel the stickers off after we started them for her! And then we helped her put them on the paper after she got to play with them for a minute or two. All in all, a great therapy day!


Amanda

Valentine's Day

So this morning brought an MRI for Grace. The scan was about an hour long this time, which is longer than usual, and I'm so glad they were able to do it even though she was congested. After, it took her about 45 minutes to wake up, and after a little bit of fussiness, she was her normal self! We got home about 3:45 and Mommy took a much needed nap! After we went out to dinner for V-day!! It was a Vegan restaurant and it was pretty good! Kailyn wasn't very satisfied with her entree, but she enjoyed the appetizers. And we got a special treat from a special friend :) My friend Keri brought us over some cookies for V-day...how sweet to think of us! Now it's 8:15 pm, Grace is in bed and almost asleep (she didn't have her afternoon nap) and Brad and Kailyn are playing Country Rock Band (Brad's v-day present from Kailyn!)


Fun day, Fun day. Brad has to report to Jury duty tomorrow after 5 to see if he's needed.

Amanda

February 14th

Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. 1 Corinthians 13: 6-7.

Valentine's Day!!!

So, I know it's not Valentine's Day, but I had to share what my plans were. Of course they have to be in secret code so Brad won't guess, but I can give the outline of what's going to happen.

Of course, tomorrow Grace has an MRI, so that kinda makes things wacky, but here's the outline.

MRI in the morning. That will take about 3 hours adding on time for her to come out of it and recoup.
Put her down for a nap and finish up the V-day gifts for Brad from Joanns. Then give the gifts to one another, and get pretty.
Go out to a new restaurant I've found that I'm super excited about! have a lovely dinner with the girls, then come home and play Brad's valentine gift from Kailyn! And then who knows where the night will go from there!

I know it's kinda a wacky v-day because of Grace's MRI, but I'm not putting it off just because of a holiday!

Amanda

Hubby/Wife Countdown Day 13!!

So we were supposed to go to the park after church for a picnic, but since Grace wasn't feeling very well and I had a meeting at 4 for one of my callings, we decided against it. But instead, Brad and I watched a movie together after the girls went to bed. It was a suspense, and a really good one at that! Today didn't have a game since we were supposed to go to the park.


Amanda

Grace's Medical Binder

So ever since Grace has been having all these medical issues, doctors, paperwork, and appointments, I put together a binder so everything was together in one spot. I am definitely going to buy another binder, or maybe just a bigger one because this one is WAY too full. I put everything into slipcovers so they don't get torn out or wet.
This picture is the cover, along with the business card for her Developmental Ped. Isn't she cute?!
Look how thick this sucker is!!! And this is just one year of stuff!! I am going to do this all her life so she can have everything documented. This binder has saved me numerous times when doctors say, "when did she hit this milestone?" I can just flip right to the milestone page and there it is! I've had lots of compliments from her doctors about how organized I am. A little OCD I've also been told but I don't care! I'd rather have everything together than everywhere.
I like seeing the front of the binder push up a little more and a little more as we go. Every week Grace gets a printout of her progress from her Water Therapy, so that's what's really adding to the size!

Here's all the tabs on the side. I just put post-it notes so they are easy on/off.
Here's a closer view...
And here's the top.

Here's a list of the labels I have:

1. Grace's Medical History
2. Personal Information
3. Milestone Sheet
4. Grace's Entire Medical Report
5. IFSP & Therapy Paperwork
6. Frequent Number's & communication log
7. Easter Seals Paperwork
8. Directions to Activities
9. Water Therapy Directions
10. Planet Gym Directions
11. Music to Dado to Water Therapy directions
12. Music and Language group handout
13. IEP paperwork (for when she turns 3)
14. Other Handouts

This binder is definitely a life saver, and if there's ever an emergency (house wise) and we gotta get out quick, there's her entire life in a binder!


Amanda

Grace Meeting a Chicken

We have 11 chickens, and I love having chickens! They are cute, they are brainless (seriously...they look up when it rains and drown), but they are oh so sweet because when you get close the crouch so that we can pick them up :) Oh, and they get along with our two dogs (6 year old and 6 month old) and our cat...and the dogs chase away the neighbor cats when they try to get the chickens!! Good animals! Codependency rocks!!

Anyways, here's Grace with the chickens!

Daddy was trying to get the chicken to look up, but got his hand in the picture instead!

Mommy, Grace and the chicken. This chicken in particular always comes running up to use when we come out the door so it can get picked up. It will actually try to jump in your lap if you sit down!And Grace's silly face...and mommy's old hairdo! I don't miss it ONE BIT!!! I just can't wait till Grace can walk so we can let her play with the chickens. I don't let her down now because there's so much poop all over that she'd crawl in it.

Amanda

New Blog Picture

I like to change the blog intro picture with the seasons, and since I've had it pink for so long, I had to change it!!!

This is what I've had since after Christmas :) I like the flowers in the shape of a heart!! I'm so lucky when it comes to finding pictures that go well with Grace and her blog. Here's the new blog picture.

Sometimes I've tried to have the opening sentence have to do with the flowers or the picture, but I just don't know what to say! And I also want 7Q36 in there so when people are blog surfing, then they can find mine (if they are looking for support). I really like this picture! It just makes me feel the cool breeze, the sun shine on my face, and the smell of the flowers all around me as I drag my hands through them.


Amanda

Hubby/Wife Valentine Countdown Day 12!!

Can you believe it...we skipped this countdown!! Holy smokes we were doing so good!! I will update on it once we make up for it today! We haven't done #13 either :) We are bad!!

Amanda

Valentine's Day Countdown Day 13!!!

Oh my gosh we are so close to being done!!!! Grace didn't get anything today because her quiet book just didn't get done in time! Mommy slacked off and played all day with Sissy yesterday instead of being home and sewing! While Kailyn and I were out, we bought new clothes and jewelry for her as well as getting her hair streaked, so that's the Day 13 and 14 gifts :)


Amanda

Valentine's Day Countdown Day 12!!

Kailyn finally got her owl...I was going to make her wait to get it but I just couldn't wait any longer!!! So he now sits atop her bed every day :) And he totally fits in since her sheets are zebra blue too! Grace...sweet little Grace....she's going to get so tired of getting clothes that are way too big!!! She got another dress :) But, I'm now going to make her something that will actually fit. I got a pattern for pajamas that I will cut to size one, which is what she seems to be wearing (pattern size 1) even though she's wearing 2T clothes!

Amanda

The NEW ME!!! And the new KAILYN TOO!!

So we totally went out yesterday and had fun together!! Kailyn got her hair streaked and I got my hair cut (10 INCHES OFF!) and styled, and new clothes too.
Isn't Kailyn's face silly! I asked her to smile and this is what she did, so now I'm posting it for the world to see!
Aww, there's that beautiful smile :) Isn't she GORGEOUS?!! Gotta keep those guys away!
Here's me. New shirt, new necklace, new face (makeup) and new hair!!
I had no idea what to do with my arms! But I guess that's ok!
Big sissy and little sissy the day before Valentine's Day! I made that skirt for Kailyn, and the dress for Grace!


Fun stuff!!!

Amanda

February 13th

Find ways to help people feel good about themselves.

This is another good one for me because I'm not always looking at other people in a way of trying to help them. I mean, I give the normal compliments and things like that, but it's more than that! Wanting to be around them could help boost their self image. Going out and hanging out with them does the same. And I've also noticed that actually looking at them in the face when you talk to them (which I struggle with at times) also helps them feel better about themselves. I'm still learning on this one, though, because I still am a bit selfish and only think about myself. But with what life's thrown at me, I'm learning fast!


Amanda

Hubby/Wife Countdown Day 12!!!

So we did a word search for the game today :) Can you guess who won?? ME!!! I love doing word problems and do them all the time, so of course I'd be good at them! The prize was dinner of my choice (going out) but instead, I had Brad bathe and put Grace to bed, which I loved! Almost done, almost done.


Amanda

Today was a Busy Day

So this morning I took Kailyn and Grace to JoAnns to make Daddy's Valentines present, and then went to Super Cuts to get my hair cut...Oh YEAH!! It was free because I donated to Locks of Love! Then after that Grace was super fussy so we took her home and totally had a big girl day! We went to Togos for lunch and split a Hot Pastrami (my super duper favorite) and then to TK Salon and got Kailyn's hair "frosted" with blond highlights! It looks GORGEOUS!!!! Then we went to Kohls and I bought a few tops and one pair of very nice slacks, and then I took her to Tillys and spoiled her there. But we couldn't pay for the stuff because I had the hubby's credit card, so we went to Wally world and got his v-day and birthday gifts (that were from Kailyn) and then some hair products, makeup, shower caps (we are going to do a hair treatment with avocado and honey together on the next girls night), tons of jewelry for me, a new bathing suit for me, and...I think that's it! But we couldn't pay for THAT stuff either because of the stupid credit card, so we went to pick up Brad and Grace and went back to Tilly's and Walmart, paid for the stuff, and by then it was 8 and were home!! Fed Grace, I played PEEK A BOO with her for the FIRST TIME!!! She actually would cover her face, wait a minute, and then move her hands!! WOW!! There were a few times where she would cover, peek and bust up laughing because it was just so funny, and then move her hands! We did this for about 4 minutes, and I just loved it! Then I got her all riled up by shaking my head at her, which makes her go hysterical because of my flailing hair! Then up to bed she went :) Now movie time for Daddy and Mommy. Then church tomorrow with my new everything! Oh, and I got my eyebrows waxed (OUCH!) but it didn't hurt as bad as I thought. But I must admit, it hurt enough for me to shy away from getting my lip done!

Oh, and yesterday I went to Joanns and got the rest of the supplies I needed for one of Grace's quiet books, so I just need to put that together after I finish sewing Brad's shirt (I'm making it for him for Valentine's Day!! Hope I can figure it out and it fits, cuz I'm gonna have him wear it on our date!)

Oh, and I'm so excited because this is my first shirt I've ever made him, and after really going over the directions, it doesn't seem that hard! So I'm really thrilled about it. All that's left for it is cutting it out and sewing it! If it works out, slacks and a couple other white shirts are in store for him! This is so FUN!! And oh my GOSH!!! Kailyn wants me to MAKE HER PROM DRESS FOR HER!! WOWOWOWOWOWOWOWOW!! I'm so excited, and thrilled, and feel so good that she'd want me to do that!


Amanda

Valentine Countdown Day 12!!!

Today Grace got yet again, another dress I made her! And Kailyn got a zebra print message board for her to tack things onto and put pictures on! I'm so glad I've almost made it to the end of the countdown!!! WOO WHOO!!


Amanda

February 12th

Our words are important, but our actions carry more weight than our words.

I think this one weighs heavy on me because of a friend of mine who recently lost her 1 year old daughter. She and Grace were just days apart (age wise). We have talked a lot about things she's going through, and how alone she's feeling, and I tell her all the time that I'm there for her, but I just didn't feel like I was doing enough. So I just started doing little things for her and her family. I made her son a owl pillow, which I just head he loves! And I've given them some meals, and so sugary treats. I never knew if it made her feel bad or good, but after visiting with her one day and hearing that she doesn't know what she needs, I'm glad I was doing that stuff. Service makes me feel good, and obviously helps her too :) I can't take the pain away from her losing her baby, but I can kinda show her I'm thinking about her, and her family.



Amanda

Valentine Countdown Day 11!!

Last night I gave Kailyn mango spice lollipops (which I found out later she didn't like as much as the pineapple ones) but she still likes them enough. Grace got a shirt that I made her, but of course it's super big! What's funny is that the sizing on the pattern was 18 months, which is her size in a month, but it's SO big!!! But that's ok, she can grow into it.


Amanda

Hubby/Wife Valentine Countdown Day 11!!

We are so close to V-day and I'm so excited!!! Today for the game we had to put 16 words in alphabetical order (they were focused on love!) I won! So for my prize I got to hear 10 things that were special about me :) Ahh, I love winning! I like these games too, and brad looks forward to them too, so that's always fun to have him wanting to play them!!

I also went to check out the restaurant that I'm going to take brad and the girls to for V-day! it's new restaurant that just opened, and I'm pretty excited about taking them there!
Amanda

Grace's Development

Creative Development
I thought it would be interesting to write about all the different developmental aspects of Grace just so that it's "in the books" about where she is :)

• notice characteristics such as light and dark, colors, shapes, movement, textures, and patterns (yes!)
• use all of her senses-and feelings- to interpret the world around her (yes)
• communicate through postures, gestures, facial expressions, cries, and other sounds-and after the first year- in words and phrases (yes, not quite the words yet though)

Communication Stages
0-12 months

• make eye contact and smile (yes)
• uses arms and legs to express joy, excitement, or anger (yes)
• repeat babbles (yes)
• understand language (by 8-12 month) like putting a hat on their head when told to do so (she can "come here" but not much else)
• say their first words (daddy!!!)
• express an entire sentence in one word (out!!! every time the water goes off in the bath, she knows it's time to get out and will turn to me and say, "out")

1-2 years

• Communicate using sounds and utterances with adult intonation (yes)
• engage in telegraphic speech (using one or two words) to communicate (not yet)
• begin to combine words (no)
• Know between 20 and 50 words (no)

Motor Skills Development
One Month

• Lifts chin when placed on stomach (not until about 2 Months)

Two months

• Lifts chest well above surface when placed on stomach (not until about 5 months)

Three-four months

• Reaches for objects (yes)
• Holds head up steadily (about 5 months)
• Rolls from side to back and from back to side (3 months 3 weeks)
• Has complete head control when sitting on adults lap (yes)
• Holds head erect when carried (yes)

Five-Six months

• Sits alone briefly (not until about 6 1/2 months)
• Reaches and grasps successfully (yes)
• turns completely over when laid on back or stomach (yes)
• prefers to sit up with support (yes)
• Uses hands to reach, grasp, crumble, bang and splash (yes)

Seven-eight months

• Reaches for spoon (yes)
• pulls self up while holding onto furniture (not till 13 months 2 weeks)
• Propels self by arms, knees or squirming motions (no, didn't inchworm till 11 months)
• Eats with fingers (yes)
• Picks up large objects (yes)

9-10 months

• walks when led (no)
• reaches for and manipulates objects with good control (yes)
• Stands holding onto furniture or other supports (no, not till 12 months)
• Crawls on hands and knees (no, not till 15 months)

11-12 months

• Stands alone (no)
• May walk alone (no)
• shows a preference of one hand over the other (no, not till 16 months)
• holds and drinks from a cup (no)
• fits blocks, boxes or nesting toys inside each other (no)
• picks up small objects using thumb and forefinger (not till about 13 months)

12-18 months

• improves from walking a few unsteady steps to walking well (no)
• slides down stairs backwards, one step at a time (no)
• Stoops to pick up toys (no)
• Turns pages of a book (yes, from about 10 months old)
• scribbles (yes)

Interesting to see...I think milestones are lame! They are built for the "normal" child, rather than the extraordinary child!!!


Amanda

Speech-Language Milestones

I had received this paperwork from Grace's doctor about milestones, and usually, I've shied away from milestones because I know how behind she is, and they only seem to upset me more than anything! But I thought I would let everyone know where she is with her milestones, as there's some people that might be wondering how she's doing with that.

Birth-3 months

• At 1 month, baby can discriminate among individual speech sounds (yes)
• Reflexive cries, vegetative cries (yes)
• Makes pleasure sounds (yes)
• Cries differently for different needs (yes)
• Smiles when sees a person (yes)

3-6 Months

• Can discriminate among sequences of sounds (yes)
• Variety of vocalizations significantly increase (yes)
• Repeats the same sounds (yes)
• Transitional or marginal babbling single-syllable or consonant-like sounds (yes)
• Babbling sounds more speech-like with many different sounds, including "p, b, & m" (yes)
• Vocalizes excitement and displeasure (yes)
• makes gurgling sounds when left alone and when playing (yes)
• Uses sounds and gestures to indicate wants (yes)

10 Months

• First words emerge (not till 15 months with "Daddy")
• Imitates different speech sounds (yes)
• Has one to three words like bye-bye, mommy, daddy (no)
• Understands "no" and "hot" (no)
• responds to simple requests (no)
• Understands/responds to own name. (yes)
• Uses song like intonation pattern when babbling (yes)
• Uses echolalia (yes)
• Variegated babbling "dadu" (no)
• Jargon babbling "intonational changes added to syllable production" (no)
• Uses speech sounds rather than cries to get attention (no)
  
• Uses nouns almost exclusively (no)

there are more ages, but I will stop there as the next group of it was for 18-24 months, and she's only 17 months.

Language Milestones:
Birth-3 Months

• Eye widening, eye blink, startles to sound (yes)
• Eye widening, eye shift, eye blink, quieting, beginning head turns by 4 months (yes)

3-6 Months

• Head turn on lateral plane toward sounds, listening, attitude (a little late but yes)
• responds to changes in tone of voice (yes)
• Notices toys make sounds (yes)
• Pays attention to music (yes)

6-12 Months

• Direct localization of sounds to side, directly below ear level, indirectly above ear level. (yes)
• Understands and responds to simple commands (no, not till about 13 months)
• Enjoys games like peek-a-boo (no, not till about 16 months)
• Listens when spoken to (yes)
• Recognizes common words for items like "cup," "shoe," and "juice" (no, not till about 14 months)
• Begins to respond to requests like, "come here," and "want more?" (no, not till about 13 months

12-24 Months

• Direct localization of sounds on side, above and below (yes)
• Points to a few body parts when asked (no, just learned nose at 16 months)
• Follows simple commands and understands simple questions (yes, at 16 months)
• Points to pictures in a book when named (16 months, but you had to have labeled them for about a week every single day and during that specific time in order for her to remember)
• Enjoys listening to simple stories, songs and rhymes (yes!)
  

Language Development Milestones: ASL
Birth-3 Months

• Fingermovements evolve into rule-governing fingerbabbling (no)
• At 3 months, fingerbabbling invreases, and baby attends to faces, movements, and signs (no)

3-6 Months

• Fingerbabbling increases (no)
• Visual attention increases (yes)
• Fingerspells to self (no)
• Makes facial expressions (no)
• fixates to face (yes)
• fingerbabbles back to conversations (no)

6-12 months

• Uses syllabic manual babbling and manual jargon to self and objects (no)
• First sign reported at 8 months, first sign signs "frozen" with no inflections (no, not till about 13 months)
• Distinguishes facial expressions "anger, friendliness" when accompanied with appropriate behavior (still learning this at 17 months)
• Communicates with gestures, pointing and pulling (yes)
• Produces some meaningful communications (no)
• Responds to simple commands, questions and statements (no, just starting to respond at 17 months)
• uses some "true signs" to satisfy needs or wants (at 15 months she signed "More")

12 Months

• ASL sign babbling (no)
• Uses baby signs (no, just started to at 15 months)
• One word signs include nonlinguistic pointing (no, not till about 13 months with the pointing)

12-24 Months

• Manual jargon babbling continues (no)
• First 10 signs produced (at 17 months she knows more, eat, all done, bye bye, blow kiss, dog, baby, yeah and book...so 9 of them!)
• Passes 50-sign milestone (not yet!)
• Follows simple commands and statements (not in sign, but does understand "come here," "wave byebye/hello," "blow kisses," and is learning "give hug."
• Understands names for things in environment (she knows "dog" and "tree." And even though that's it, we're still working on it!)
• Expands vocabulary from about 5 words to more than 250. (she knows daddy, tree, ruff ruff for dog, wow, what, and out.) But we are working on this every day.
• Enter 2-word stage with full range of semantic relation s at 2-sign stage. (at 17 months she's just started learning "daddy out." That's all we've been working on for now, as we don't want her to get confused with too many 2-word phrases.
• Sign order shows semantic relations (no. When we go outside she signs "dog" when she sees or hears it."
• Uses facial adverbs "puff, mm, th" (just uses mm at 1 7 months)

Amanda

New Signs...and Language

I can't believe how fast this kid is learning signs! I think I posted about it before, but I had to be sure that she did know the new sign by asking her during days that we didn't ever use the sign, or show it to her. So while we were waiting for Daddy to get out of his eye doctors appt, I asked her, "Grace, what's the sign for baby?" And she rocked her arm, and then put her two arms together!! And I said, "Grace, what's the sign for book?" And she did the sign with one hand!! WOW! We've been working on shoe, which is two fists bumped together at the thumbs. After showing it to her (hand over hand technique) I asked her, "What's the sign for shoe?" and she did it!!! That's pretty good knowing that she can remember it after we'd just worked on it! We are also working on cracker, but since that's a pretty hard one, it will take a while. She is supposed to tap her closed hand on her other elbow for that.

OH! I almost forgot. A couple nights ago we were having dinner, and I wanted to start working with her on actually using her voice with the words rather than just signing. So it was a good 10 minutes that she and I worked on "more." She would watch me say it, and as her little mouth mimicked what mine was doing, I could just see the wheels in her head turning! She got so close to saying more too! First, it was "mmm", and as we continued working together, and she saw that I rounded my lips after the "mmm" she understood that there was another sound she had to make! So then she went to saying "mmm-rrr." WOW!!! YES YES YES YES!! That's amazing isn't it! And now, whenever I say "do you want more?" she signs it, but then when I say, "you need to say it...more" she does! "mmmrrr." Good girl!!


Amanda

February 11th

So let us then definitely aim for and eagerly pursue what makes for harmony and for mutual up building of one another. Romans 14:19

This is a really good one...a SUPER good verse for me to have found :) A lot of times, I'd rather have the last word and have what I say go than to pursue harmony! So this was nice to find, as it's a reminder that its not all about me, and that I'm not always going to get what I want. Actually, I could use this for every person in the family. I've already talked about Brad. Then for Kailyn, this is a good quote because I need to find a more harmonious way to talk to her and deal with her than what I have been doing since she flies off the handle SO fast when I just "tell it to her like it is." Everything has to be explained, like I'm talking to a young child. And with Grace, I need to work with her, kinda bend and flow to her flow and bend, and rather than pushing therapy on her, let her show me if she's ready or not. Of course, that's what I've done most of the time, but there are those times where I just want to strap her legs straight so she HAS to stand against the wall!



Amanda

Valentine Countdown Day 10!!!

I am so excited that I've almost completed the countdown!! YES!! This will be my first time I've actually put a fun family project together and have completed it. Today Grace got another one of her dresses that I made her (pictures are in the past posts) and Kailyn got a super cute dog lollipop! She loves to collect them and put then in a vase on her chest of drawers! It's a blue faced dog with chubby cheeks!


Amanda

Hubby/Wife Valentine Countdown Day 10!!!

Today we had a fun game! And sadly...I lost. The winner got to have 1 hour of free time where they didn't have to do anything...I really could have used that! But he won by a hair, so all is fair in love and war I guess.

I'll beat him next time for sure though!!!

Amanda

Long Nap Today!!

Wow, I put Grace down for nap about 12:30 pm, and it's 3:30 pm now and she's still asleep! Shew, she was a tired girl. Probably because we did a lot of therapy today with walking and standing on her own. I really think she can do it, but just doesn't have the confidence because there were times I was making her stand up leaning against me and she'd move her foot forward like she's been doing it forever! But then she would freak out and whine, and fall to the ground or arch her back or bounce, whatever she could do to get away with not doing therapy. But we'll keep trying...I can feel the desire for a walker coming back though...oh boy...I might just up and buy one one day.

Here's what I've been able to accomplish while she's been asleep! (Also cleaning the kitchen/dining room and living room, but didn't take pictures of that!)

Here's the eggs that I started again :) Sadly, I only have one plastic sheet to pour them on, so I can only do one batch at a time. This batch has about 15 hours left!
These are the yummy cookies Brad brought home from work for me :) Mmm....they are about the size of a small tea plate! WOW!
Here's the dried eggs from the first batch! Aren't they cute?! I know, weird that I'd call them cute, huh?
Here's dinner!!! Tamale Pie! It smells DIVINE as I'm writing this post!!

And here's the game Brad and I played. It will be described more in the countdown post.


Amanda

Update with Duane

Duane is Grace's Spinia Bifida nurse, and we talk with him a lot about her neurogenic bowel. Grace hasn't had a bowel movement in two days, and after he read my email telling him that, he gave us a call. We are going to get an x-ray when she wakes up from nap, and he wants us to give her a suppository to see if there's anything in there, so we will do that after the x-ray. This poor little girl just can't stay at a normal bowel movement regiment! But I'm willing to work with her and do what I need to to help her as much as I can!

Amanda

Cookin' Mama

It's come to my attention that brad really misses the "home-cooked, dinner on the table with the family" meals. I had just gotten so wrapped up with Grace and all her therapies and my lack of energy that I had stopped, and we were pretty much eating by ourselves whenever we were hungry. So I've started up cooking again, and I've had a menu set up for a while now that has a different meal every day for one month, and we just continue to go by that menu as the months go on (that was the plan anyways). So I'm back to that. We've had cooked meals together for about 5 days now, minus our date night "In N Out" meal last night! Tonight is Tamale Pie with Corn Fritters on the side and I'm excited to say this is my first time making both! Mmm...sounds good too! We'll see how it turns out. The fun thing about the menu is that it's all from food storage food, so we don't have to shop for anything for the meals. And now that we have a $60 a month budget for anything we need, I'm glad we have chickens for eggs and powdered milk! And I'm also glad I have tubs of butter in the freezer so we don't have to buy much of anything! And $60 a month is definitely doable, because there's nothing we need that's not food items, and food item wise we don't need anything at this point so we're good!


Amanda

Grace is on the Mend

I am happy to update that there have been no more fevers for little Grace for 2 days now!! YES!! I am so relieved! She's been taking her amoxicillan two times a day, and we've also started her on her Miralax again, which we probably shouldn't have stopped...because she hasn't voided in 2 days. DARNIT! But we'll get her back on track for that. I was supposed to take her in for an e-ray of her bowels/chest on Tuesday, but keep forgetting. Grr. She's got a worse cough, actually it's so bad I don't want to take her out in public, and still has her runny nose, but the nose isn't nearly as bad. So we will just continue to hold off on any therapy, let her rest when she's tired and eat when she's hungry, and hopefully all these yucky things will go away soon! She's got an MRI on the 14th but I think I'm going to have to cancel it again because of the nose, but I will call on Friday and see what they say. She's also been getting up around 1-2 am every day for the past three days or so, and actually this morning was the only time she didn't. So I'm hoping she's not getting into a routine with that... Otherwise, we're doing great!!


Amanda