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!!

Update from MRI land

Finally, we are home, and I'm awake enough (for this minute or two) to update Grace's blog and let everyone know how the MRI went. Well, we got onto the road a bit late...actually 20 minutes late...got there with 30 minutes to spare, and then I had to be snoody because the receptionist for admitting took someone back before us, even though we got there first. GRR. Don't mess with a mommy when it's this early, we are late, and I haven't eaten!! So whatever, we were able to admit her without paying because it was a re-do scan, ran her up to the MRI area, and then waited around about 30 more minutes.
Finally, they gave her the medication to make her loopy (relaxed) so that they could take her from me without her fussing (even though she wouldn't have anyways). After consulting with the doctor, signing papers, and everything else, we went to another area to wait even longer while they got the room set up.
So we played for a bit!! It was fun, Grace had a great time, and so we were able to relax a bit. But then finally the doctors came out, got her from us, and left her new bear and slippers behind for fear that the thread might cause a problem for the machine. I was lucky enough to get a picture of the MRI machine with my tiny little Grace right there!
About 2 hours later I finally got fed up of sitting in the waiting room, so I went to throw some cold water on my face in the bathroom. After I came out, I heard the sound of the crib wheels coming down the hallway, and I just had that gut feeling that it was the crib of my little one! I waited in the doorway, and asked the ladies "is it my little one?" And it was!! I was so excited, and so we hightailed it right after them and waited the extra 30 minutes or so for her to wake up from the anesthetic. Daddy finally ended up "helping" her the rest of the way to wake up by rubbing her hands and her belly...what an impatient Daddy! Then I got to pick her up and feed her. This MRI though was weird, because the waking up part was MUCH different than usual. The first two times, she woke up without problems. The third time, she took a while longer to wake up, but didn't fuss much. This time?? Shew! She was extremely fussy, took forever to wake up, and didn't get rid of that fussiness till we actually started walking out after being discharged! She would eat a bit, then cry and scream, and then go back to take a couple more sips of her bottle, then let go to cry and scream some more, and then back to the bottle! Silly girl! After awhile, we were discharged, Daddy went to get the car, and I walked down with one of the nurse assistants because hospitals are like mazes! Then we headed home. Mommy crashed on the bed when arriving home, and Daddy was a trouper and stayed up with her :) He knows how I get!! But all in all, Grace did wonderfully! She was such a strong little one, and puts up with all this stuff we do to her. Now, we are hoping the results come back in our favor!

MRI Day. The Day I haven't been waiting for

Well, it's 6:39 am. Gosh, I haven't been up this early in so long. I went to bed a measly 5 1/2 hours ago. I just couldn't sleep. So I'm home from taking my step-daughter to seminary (yes, she goes to class this early in the morning) and now I'm twiddling my thumbs until we can leave. She's already awake, so that's not good. Usually, I like to let her sleep till we leave, and then she sleeps while we are driving, and then she doesn't get hungry. I sure hope she won't be fussy today. We've NEVER had a problem with her realizing she's been starved since midnight and now she's hungry and hasn't had a bottle! Well, I better go get her... hope all goes well today.


There are some pictures of Grace waiting to leave I thought I would share. That is her playroom :) I just love the outfit she's wearing because it's got no metal pieces, which means that will be her MRI outfit today. And I also like it because it's got HORSES all over it!! Awesome!

Grace at Planet Gym

Yesterday was Grace's first time at Planet Gym for her therapy group day, and I think she had fun! Her Physical Therapist worked with Grace on standing at the balance beam, and moving to the side by stepping to the side and letting the other foot follow. She did pretty well, but she did whine like she was saying "mommy, what's going on...I'm nervous." But she did great!After we worked at the balance beam for a while, we followed Grace over to the stairs to the trampoline! Her physical therapist helped her get on her knees, then up to squat, then up the stairs!! Of course, there was the nervous whining again, but I don't give in! I really want her to go through the motions repeatedly so that she understands it might be scary, but it will get her places!


She did so great!!! After playing on the trampoline, we went to the big room that had more fun stuff! I put Grace inside a tube, and she got out all by herself! I am so glad she didn't let the tipping of the tube scare her!
Here is the video of her getting out of the tube!




She did so great at her first group play day! Of course, when she went into the pit of foam blocks, she didn't enjoy that at all. And after that, she was whiny they rest of the time, but that's ok. She did wonderfully and I can't wait until the next trip!

My little Lemondrop

It was so fun to go on a walk last night with Grace and Daddy. We used to go nightly, but then sometimes the temperature was so high that we wouldn't go. But last night was just so lovely that we had to go! So I dressed Grace up in her little jumper, bonnet and sweater that was from when I was little, and off we went! Of course her older sister had to say she looked like a banana, but Daddy said it best, "she looks like my little lemondrop!" How sweet!

I just had to get a picture of Grace with the background of the setting sun. Heavenly Father always seems to make our surroundings so beautiful after a hard day...

It was so much fun to get out of the house, get away from the worries, and just go for a walk to the park. It was fun to have Daddy push the stroller and see Grace looking up for him! I just love watching the two of them together because it's so sweet to see the strong bond the two of them have together.
We had so much fun at the park, and I'm just so glad that we've found something that Grace loves to do some much, and that is swinging! And the swings are especially helpful when she's just so fussy and there's nothing to relax her. And for those moms out there wondering why she's SO bundled up...she has an issue where her hands and feet get cold faster than the rest of her body, so I like to make sure she's bundled up enough.

Therapy today

So today Grace had her PT come over, and her Infant Specialist was also supposed to come but wasn't feeling well. Anyways, Grace and PT worked a lot on being on hands and knees, as well as going from sitting to hands and knees, and from laying to sitting. Grace is definitely so close to going from laying to sitting up, but she hasn't made the move by herself. Also, she did very well with her rocking back and forth on her hands and knees, which helps her learn how to adjust her weight, and shift her weight. Also, Mommy has learned how to help Grace tighten her ab muscles by tapping her stomach when she's on hands and knees so she will remember to tighten and not have a slack tummy! She did so well, but for the first time, Grace fussed at her PT! Her PT said, "that's the first time she's fussed at me!!" I've noticed this too...she seems to have started understanding that if she whines a bit, then someone will be there to help her or have their hand out for her. So I will be working on that so she doesn't get spoiled! It was a wonderful therapy session today! And when she was working with her PT during sitting up time, Grace sat straight backed the entire time without tripoding!

TWO FOLLOWERS!

I am so excited to say that we now have TWO followers! I've had this blog since before Grace is born, and sadly, just recently got these two followers, but I'm SO HAPPY!! So if anyone else knows of anyone that would like to follow this blog about my special girl Grace, please let them know!

She is so Smart!

So I have to brag a bit about Grace because she's just so SMART!! We've been working with her on saying "out", and have been using that ALL THE TIME when we go out the door, out of the room, out of the car, out of the bath, just OUT of everything and everywhere! And she's doing so great with showing that she understands! I had her in the bath this evening and had just about finished up the bath and sat there for a bit watching her, and it's like something just clicked in her head telling her that she was done, and she looked at me and said, "OUT". And I responded, "you want out Grace?" and she said, "out, out, out" over and over. Obviously, she wanted out! When I got her out, she just giggled and cackled so much because she was so happy. Another thing I've done with her (because repetition is key for children with ACC) is when I lay her on her towel, I make a huge ordeal of wrapping her with it, and I always make silly noises like you would hear when a plane flies over head..."SHEW, I got you!" She just gets SO happy, and you can tell she knows what's coming!!! Oh I love her.

Daddy has some great news about her as well. We read to her every night, RELIGIOUSLY!! (I love reading, so we've incorporated it). Anyways, he came out of her bedroom pretty quick and down the stairs with her saying, "you gotta see this!" He came and sat by me on the couch, and with every turn of the page, he would say to Grace "where's the kitty?" And she (for the most part) would put her hand right on the kitty!! AWESOME! I am so glad he's got her learning what a kitty is! Now I make sure I ask her where the kitty is every night we read that book! Good job Daddy and Grace!

Therapy Session

I just stare at Grace with utter amazement as she sits upright throughout her entire session of therapy today. I can't believe all the hurdles that she's gone through, and how strong she's been through everything. And, as if that wasn't enough...she then had to show her mommy just how strong she was by crawling over her caterpillar. But it wasn't just once. She climbed over it to get something, and then decided, "nah, I don't want that." And then she climbed right back over it again to get back to the side I was on! This isn't some little tiny caterpillar! It's a huge, fluffy caterpillar! WOW! What a feat! She also showed us how she plays "Peek-a-Boo" and it was so adorable. I just can't believe how smart she is. She said "out" as the therapist, Ms. Allyse, was leaving, and she waved once the door was closed. What an intelligent little girl I have!

Grace's Health

Shew, Grace has really taken a beating from this cold she's had! She's had it since getting her shots on the 3rd. Poor thing. As of today, she doesn't have to sleep in her swing or with the humidifier anymore, and all she has is a runny nose, but I just can't wait till her health is back to normal! I'm assuming the teething of 5 new teeth isn't helping! But her sleep patterns have gotten back to normal, and she's sleeping through the night without waking because of not being able to breath through her nose. 14 more days till her MRI...I try so hard not to count down!

MRI Delay

Well, right at this point, I would be traveling to Roseville to get Grace checked in for her MRI, but because she isn't breathing through her nose at all, we had to reschedule the MRI for the 27th. In a way, I'm happy we rescheduled, because she's never fasted that long into the afternoon. Usually, we have the earliest appointment (8:00am) and so it's easy for her. The appointment today was for 12:45. So the 27th now. Hopefully, she will be healthy by then. That one is also a lot earlier, so it won't be as stressful for her. I am really hoping there isn't an increase in the fluid in her spine...she just needs a break from surgeries so she can grow and strengthen. She will pretty much be back to where she started if they have to open her up again...I hope not.

Grace is sick

I don't know what's going on, but ever since Grace had her shots on Friday, she's been doing poorly. She had a fever over the weekend, and then the stuffy/runny nose came on Sunday, and hasn't left us. During the day, she's been a lot more tired than usual, sleeping longer during her naps, and gets tired faster. At night, she's having trouble sleeping comfortably, and has been having to sleep in her swing because it's easier for her to breathe. I was watching her sleep last night and she had about 5 times that she didn't breath in for about 15-20 seconds, and I'm really hoping it's not sleep apnea. She also has been crying in her sleep, which she hasn't done since she was a newborn. I'm super worried, and am taking her to the doctor today to see what's going on, and to hopefully have a sleep study done.

Physical Therapy Continues

Well, today Grace's therapists came. She has one physical therapist, and one infant specialist, and she helps with communication, vocalizing and cause/effect. Grace did very well today! She's becoming much stronger in her sitting up, and she's pretty graceful now at getting down to her stomach from a sitting position! I am so proud of her! With some repetition help from the PT, Grace showed that she understand "in" as well as "out" when it pertains to taking things in and out of a container! Of course, she wanted so badly to eat the container too! We are now working with her balance when sitting up, and trying to get her to reach to the side. Also, trying to get Grace to her hands and knees is the major turning point for us. I feel that if she will finally start doing that, then mobility and crawling will soon follow!

Daddy is Jealous

Well I do believe that daddy is jealous of Grace getting all the attention, because he had to go in and get an MRI as well! He's been having a lot of trouble with his memory recently, as well as seeing things on the ground and hearing when I talk (or maybe it's just ignorance!). So after visiting with his doctor, she scheduled an MRI for his brain, as well as a hearing test. Happily I can report that there was nothing wrong found with Daddy's brain!! He's just got so much stress right now in his life that he tents do forget things more often. I'm glad to hear there's nothing wrong with him, because he's my right hand man, and I don't need to be worrying about him as well as my little girl!

Grace's birthday!

Gosh I can't believe a year has come and gone so fast. It seems like just yesterday that I delivered Grace and held her in my arms all bundled up and tiny. But alas, the time doesn't stop for us, but continues to tick on. My little newborn is now one year old! I am so excited! I still stumble on what I'm supposed to say when people ask, "How old is she?" I am so used to saying a certain number of months that I fumble for a bit before it clicks that..."OH! She's ONE!!"

We had her doctor's visit today for her 12 month checkup and shots, and it was a long exhausting appointment because of questions, checking heights/weights/head circumferences and basing them off of past measurements, and then the dreaded shots. The news from the appointment wasn't exactly what I wanted to hear...

It's not that it's horrible news, but I would have just liked to have gone there and JUST heard, "everything is great!" But her weight is STILL 17 pounds. She's been 17 pounds since July. So the doctor doesn't understand what's going on,... and he said from what research he's read, her gene deletion shouldn't be causing the weight loss, so he's worried. So in a month we will go back for another weight check, and until then, her diet will include: whole milk AS MUCH AS POSSIBLE, butter IN EVERY MEAL, Carnation Instant Breakfast EVERY DAY (for the calories). Her head is still the same size as well, and has been since April: 16". If you want to be technical (which for us we have to be) in June she was 16.26", July was 16.61", and September she is now 16.34". Kinda worries me that it's actually decreased... So yeah. Her height is growing steadily though. She gained a whole inch since July! Good girl! She is still in the 30th percentile for her height, but in July she was in the 27th percentile, so she's gaining :) Sometimes, though...sometimes it would just be nice to hear all positive. She will be having an MRI again soon on her back, and all my fingers, toes, eyes, and whatever else can cross are crossed hoping that she won't have more fluid in her spine, which will then mean another surgery.

So that's where we are now. I'm trying to research as to why she isn't gaining weight, trying to find ways to incorporate more fat in her diet, and waiting...somewhat impatiently...for the doctor's to call to schedule Grace's next MRI.