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.