Gracelyn is perfect.

According the umpteenth doctor we have seen regarding Gracelyn, in his words, Gracelyn is perfect. We concur.

Friday we saw a hearing specialist following a procedure a month before to remove her left ear tube that was stuck in her ear due to all the fluid and gunk. It wasn't pretty.
We have a wonderful family doctor we have started seeing, after the previous family doc dismissed my concerns and the pediatrician admitted she told other patients about Gracelyn and how we fed her HONEY and she contracted botulism. The new doc listened and agreed that Gracelyn's articulation isn't where it should be. Whether if it's from lack of speech therapy following her battle with botulism or her ears or both we weren't sure but there was an issue.
He sent us to an ENT and that is when he discussed her left ear tube that was still in and was actually the source of infection. The outpatient procedure to remove the tube took all of 10 minutes and when he came out to tell me how she did, he told me that her eardrum was totally healed underneath all of the fluid! WHAT?! He was even surprised. I exclaimed, "Praise God!" because it was nothing short of God's mercy.

So Friday we went to Hough Ear Institute in OKC and after over an hour of testing, which Gracelyn was a rockstar, we saw the doctor and in his words, "Gracelyn is perfect!" He confirmed that it was only through God that her eardrum healed underneath the infection she had in her ear. He couldn't believe all that our sweet girl has been through in her 3 years of life and when I told him she was a testimony, he agreed. The doc told us she can hear perfectly! And she doesn't need to come back to see him. He did agree that she needs speech therapy. :Last night at our Sunday School social I spoke to a speech therapist about Gracelyn. She said Gracelyn needed to be given time now that she can actually hear. Her tripping over her words is common as sheis just now able to hear sounds correctly. She probably hasn't been able to hear since she was a baby seeing as her ear infections started early. So we will work with her, she certainly isn't shy to speak, she doesn't hesitate to attempt to tell us what she wants or to tattle on her bros!! So we completely agree with the neurotologist, she is perfect!

and a bit of a showoff.

Miss Independent

In the last couple of weeks Gracelyn has become very independent. She wants no help eating, no help wiping her bottom, dressing or even buckling her carseat. The thing is though, she still needs help with just about everything. If we even come close toward her she yells "ME" over and over and over. It started out cute but now it can get kind of frustrating at times.


she did let her bro attempt to help. I absolutely love how she asks for a kiss, he tells her not right now but she kisses him anyway. She adores him and he adores her.

a result of her independence.

following the big kids at baseball practice ended in a skidded face.

the pic doesn't do the damage justice. Praying for no scars.

Follow-up Speech Eval

Gracelyn had a follow-up evaluation with a speech therapist 3 weeks ago. Since her first eval in August, besides for more single words, she really wasn't speaking better. Gracelyn says words, she is not mute, however it's very difficult to make out what she says. She doesn't speak clearly at all.
Like before, she didn't qualify for speech therapy. She is at the very bottom of communication, barely passing, but she passed. The therapist gave us more tips to help Gracelyn and said if her peers talk better than she does to ignore it. As long as she is able to communicate in some way then she is on the right track. Gracelyn still signs a lot of words. That helps so much because as she signs we repeat that word several times and then she does. The therapist was very concerned about her ears so we recently had a followup with her ENT and sure enough the tubes had slipped and the area around was inflamed. The doctor thinks there could be some improvement once her ears heal.

It's been awhile

I haven't updated the blog simply because life with four kids has been busy and, more importantly, Gracelyn is doing well.

I potty trained Gracelyn over Christmas break. She was 26 1/2 months old, my youngest of my 4 kiddos to train, and she did great!! I was very nervous about BMs because while she was in diapers we were having to do suppositories about every couple of weeks. I spoke to the pediatrician and she wanted me to increase the mirilax and obviously stop the suppositories. That's been an adjustment, just making her comfortable and able to go, but she has handled it fabulously! Seriously, gold medal, A+, excellence! I am so proud of her.

and she's proud of herself!

The only other area I can even think to mention would be her speech. Gracelyn doesn't say a whole lot of words and only says two words together at a time. She jabbers constantly but we cannot make out most of what she says. Before Gracie turned 2, she was tested and passed in communication because as an "infant," it wasn't just about speech, but just as long as she could get her message across. She did and can. Gracelyn can sign (which is a huge help) and will go over and point when all else fails.
I am trying to get an appointment to have her tested again because the assessment lady told me that she would absolutely qualify after she turns 2 but she couldn't be evaluated again until 6 months after her first testing, due to some mandate.

Gracelyn is such a happy girl! She has fun in whatever she's doing. We love her to pieces.

She loved Beauty and the Beast 3D!

Gracelyn turns 2!

As of Sunday the 16th of October we have a 2 year old! Gracelyn Paige is so.much.fun! She is a chatterbox and loves to tell long stories but we usually just understand about 1 word here and there. She can say single words: her manners, animal sounds and names, mainly close family, oh and "amen!" Double words she says are "thank you" "love you." and "read me!"

In case I haven't mentioned it before, Gracelyn loves to read. She burnt us out on several of the books we owned so we asked for new books for her birthday to switch out and we can donate those "repeaters." It's one book right after another, especially before bed in order to stall.

With all of her "funess" we do have the 2 year old fits and drama. Gracie can "no" very well.very well. She puts herself in timeout before we have a chance to most of the time,

her first slush, on her birthday.

a little "Brown Bear, Brown Bear What do you see" before bed. Her favorite book!

the night before she turned 2 I was sad about it and she was dressed as SuperWhy and sitting in a box acting like she was flying...

Gracelyn's 2 year well-check was yesterday and in her pediatrician's words, "she is happy, healthy and perfect." I concur. She weighs 31lb,12ozs and is 36" tall. She's in the 95th% for both!

In her birthday nighttime prayer we thanked God for Gracelyn and her first 2 years and asked for a blessed year in the 2's. Gracie replied loudly "UH HUH AMEN!" Amen!

Gracelyn's Evaluation

Gracelyn was evaluated Thursday, August 18 for possible treatment/therapy. She was tested on many areas: adaptive, personal-social, communication, motor, cognitive and language. It took about an hour and she was totally exhausted towards the end. The therapist had all sorts of activities that Gracelyn was asked to do and she was able to do and enjoyed many of them. G was asked to match smaller blocks to the larger version, also match the blocks of the same colors, and with 3 objects in front of her, a shoe, ball and utensil, Gracelyn was asked which she put on her foot, played with, ate with. The lady gave G a crayon and asked her to draw in linear and also in circular motions. Looking at a picture book Gracelyn was to tell her what the objects were and the lady put a cheerio in a slender jar to see if G could retrieve it. Lots of different games in the hour and lots of questions for mom about what all Gracelyn does.
At the end of the hour I was told that Gracelyn does not qualify for the treatment, which is great! She has to be lacking by 25% in 2 areas or 50% in 1. She is "normal" for her 22 month range and even above her age range in some areas. The therapist said G is actually above the 22 month range for communication. While it's great that she does well with communication, it's definitely not by talking. She signs, points, takes us by the hand to show us, or just repeats "baba" "gaga" "mama" over and over and over. The issue is that she doesn't articulate her words. Because Gracelyn attempts to say words (and isn't mute like most younger siblings are when the older siblings speak for them) the therapist believes she knows them and has them but cannot say them, whether it's from lack of mouth muscles stemming from botulism or from her frequent ear infections, leading up to tubes back in the Spring.
Either way Gracelyn needs help and that is what we will do. The therapist gave me lots of tips to work with Gracelyn at home. We have begun them and we think G is really responding. The pediatrician had told me to stop responding to Gracelyn's signing. Gayle, the therapist was NOT happy about that. She said if that is how G is communicating and I'm ignoring her then she will shut down completely. not good. So encourage signing still, even make up more signs for everything. When Gracelyn signs, repeat that word 5-10 times. Also give her lots of milkshakes to drink with a straw and even put a straw in pudding, blow bubbles, give her chewy foods and encourage chewing on specific objects such as a toothbrush (in her chair, not running around with it.) All of this will work mouth muscles.
So our household pretty much sounds like birds, with Ryan and I repeating single words and now even the boys "help." Gracelyn is definitely talking more and can say "me" with the long "e" sound. That is great for her because it's been sort of an "a" sound like "may".

botubaby update

With almost a year and a half since Gracelyn was hospitalized with C-Botulism, I look at her and am amazed at how she can run, roll around, lift her arms and legs, touch her face, pick up objects, eat and drink on her own, ALL things that due to the paralysis of nerves, she couldn't do a year ago. Now she can and she does them well.
We saw her physical therapist, Mr. Derrick, a month ago, for the first time since she was discharged from PT a year ago, and he was shocked at how well she was doing. He was using technical physical terms as he watched her step, step up, walk backwards, duck under a railing, balance on a wobbly apparatus, but then looked at me and said "she's physically normal, where a toddler her age should be!" YAY!! I knew it because I could see it and with 3 older kids, I knew she was where they were physically at her age but it was great to hear it from a pro. I mentioned to him that she wasn't talking and he said to me that it'll come.
Well last Thursday after looking at a Mickey Mouse book with a family member and Gracelyn not being able to tell who the characters were, the person became frustrated and asked if I thought there was a problem with G. My kids not knowing cartoon characters doesn't set off alarm bells and whistles to me. This person has been and was comparing Gracelyn to her cousin who is 7 months older and is the first child while G is the fourth. I asked if she remembered that Gracelyn was paralyzed and almost died? No response. While she was alluding to a mental issue. I know it's NOT mental and we left.
Now I am not going to act as if I am not concerned about Gracelyn. I worry about all of my kids but none like I have been about G. I worry daily about the effects of the toxin that invaded her little body. People at church specifically, I suppose because they prayed for her for so long, ask me often if I have seen any other affects in her in the last year. The toxin broke down the "connectors" between nerves and muscles making it impossible for G to do anything. I believe Gracelyn needed more speech therapy than what she received while in the hospital. She drank from a bottle after 3 weeks of nothing by mouth and 3 days later she was home. She was much too weak to suck so she was fed by syringe for several weeks following, much too long and her docs agree.
I spoke to our pediatrician Friday when Blaine went in for his 5 year well check. She agreed with me. She said it's like the saying, "if you don't use it, you lose it." Gracelyn can communicate and she understands when we tell her to do or not do something so the doctor reinforced that it's NOT mental. She needs therapy to build the muscles in order to talk. Gracelyn jabbers alot but it's not clear and she cannot enunciate most first syllables of words. She needs therapy and that is exactly what she will get. We go in for an evaluation around the middle of this month to begin the process.
Friday I also called the Botulism Prevention and Treatment Program in CA. I just love them, specifically Jessica. She is my go-to gal and she can always calm my fears and give me specifics as to my worries about Gracelyn. She also agreed and said that Gracelyn would benefit from speech therapy and also reminded me that she is child #4 so that very well may be a large part of it too.
Regardless, Gracelyn, with the stubbornness and mercy and grace God blessed her with, has tackled the challenges set before her and is just perfect. We thank God for her and know that she can overcome any challenge she may face.

New Vids of Miss G

Gracelyn began saying her name, actually her nickname, last week. It's so cute and she says it with a huge smile, probably because we clap and praise her when she does.

She's in her swimsuit just coming home from the splashpad and about to take a bath.

We got a new splashpad in town just in time for summer. The kids have been several times now and at first Gracie wasn't a huge fan. As we keep going, she gets more used to it and, as of today when we went, she loves it!! She was squealing and clapping just pulling up to it. After 30 minutes this morning all three brothers were sitting and asking to go home while little sister was playing and having a grand time!!

Britton is in it about halfway through in the red Crocs and then Blaine comes in at the end. I'm pretty sure Brandon was over already sitting.

clarification

Just over the last couple of weeks I have had a two moms ask me questions about serving honey to their little ones and in the course of the convo went on to say that they didn't want a botulism scare that I experienced with Gracelyn. And even one of Gracelyn's doctors told me that she had a mom argue with her when she reminded that no honey was to be given before the age of 2 and the doc said she almost offered my number to her. While I would be more than happy to talk to that mom about the risk of honey in babies under 2, honey is NOT, in any way linked to Gracelyn's botulism. So essentially I would simply be going off what I have read in books.
Gracelyn's botulism that she contracted is called "C Botulism." I know I have stated per the PICU doctor, that we would never know the exact cause of it. His best guess was that with 3 big bros they possibly came in from playing outside and didn't wash their hands and touched her hands or face.
C. botulinum is commonly found in soil. Clostridium botulinum is a soil bacterium.
Gracelyn was strictly breastfed when she became ill and even if I do eat honey, which I don't, botulism cannot be contracted through breastmilk.
My message before and especially since her illness is to wash hands. I reminded the family to wash hands prior and I still do, many many many many times a day. And not just for risk of botulism but many other little viruses and illnesses. As if I wasn't already a germphobe mom I certainly am now!

18 months!

I cannot believe Gracelyn is a year and a half old. It honestly doesn't seem possible. In so many ways now she is not a baby and that is really sad to me.

Gracelyn isn't saying much, mama (for me and her mimi. We are working with her on the long "e" sound,) dada, bye and more. She is signing quite a bit.

Gracie is a master fit thrower. The girl has talent. She knows what she wants and if you say no, she will let you know just how upset she is, even resorting to throwing herself down. Timeout is used quite often these days.

Miss G does love her baby dolls, specifically her "Pretty Princess." Mimi gave her Pretty Princess while she was in the hospital a year ago so PP has been with her through alot. When the surgery center called last week regarding her surgery and told us to bring her favorite toy, we knew Pretty Princess was a must-have. (She came with a crown that when you put it on her head it makes a cute little sound but G doesn't like the crown on the doll's head.)

Sleep is still a foreign concept but I am praying once she heals from this surgery that it will start happening. We both need it!

Gracelyn loves to dance, jump on her brothers for a "horsey ride"  or just jump on them for fun! She is fun girl who is smiling and laughing so much. We read a lot and a book almost always accompanies her in the car.

I told her to smile and this was the result

Just looking at Gracelyn you would never know how sick she was. She has come so far and it's not without prayers, amazing doctors and of course our most gracious

17 months!!

With the huge milestone of 1 year since G's botulism diagnosis only 5 days before she turned 17 months old, this month was very emotional and bittersweet for me. I watched her so much, from the way she walked, sat, "talked", ate, smiled, everything about her. She was like a newborn in many ways a year ago and to see her now, running and laughing, lifting her arms and legs, it's amazing!

she's 17 months old here, via iPhone.

the SD card hadn't been located yet

Gracelyn is doing so much these days! So much of it so cute (or we think so anyway!)

She claps often. When I open her bedroom door to get her out of her crib, after I sing her a song, read her a book, turn on a toy, give her food.
In the morning when I ask how she slept, she says "dood" (good) She picked that up from her brothers.

Her appetite is decreasing. She eats about half of what she used to, which still may be alot for others.
She's finally decided that she likes to have her teeth brushed. We are very thankful because the battle just was not pretty.
Gracelyn is battling her 11th ear infection since last Spring. We meet with an ENT a week from Friday to discuss tubes.

Gracie is so girly. If her hands get dirty she holds them out and will not do anything til we clean them off. She cares more about shoes than she does clothes. She picks out the shoes and I choose the outfit from there. teamwork already!

She can make all three big brother cry in record time. With Brandon she loves to destroy huge Lego creations and books that are left out and she hijacks toys of Blaine and Britton, which just devastates them but leaves her smiling.
And she has this look down very well...

The past year has taught us so much and brought us together like never before.

1 year

It's been a year. 1 year ago today we were not sure the fate of our daughter. She woke up Thursday, March 11, 2010 limp and unresponsive after not nursing for 2 days and being very fussy. I rushed her to the pediatrician's office where she called an ambulance to rush us to Children's Hospital. We spent the entire day in the ER and after blood test after blood test and CT scans and even a spinal tap there were still no answers. Gracelyn was admitted and moved up to PICU, where the doctor on call, Dr. Mo, came in and after evaluating her told us that he was pretty sure she had c-botulism. What a Godsend he was, he was supposed to be at a conference that week but it was canceled unexpectedly. No other docs in the unit had ever seen botulism before. She received an immune-globulin which stopped any further destruction on her nerves. The damage that was most noticeable was a weakened body, her head had to be fully supported like a newborn, she couldn't lift her arms and she wasn't able to suck.
By God's grace she went home much sooner than the doctors ever predicted. By God's mercy she only underwent 12 weeks of PT instead of the 6 months they predicted. By God's love she is, a year later, a healthy toddler full of energy, smiles, spunk, attitude and is a miracle.

I made a video for Gracelyn's first year, in lieu of scrapbooking because this took less time. The first year video is quite long so here is just a portion of it, her battle with botulism.

latest vids of Gracelyn

I have really been working with Gracelyn on saying her brother's names. Our main problem with this task is the fact that being 15 months old and a girl, well let's just say that really means that she has a mind of her own. Miss G says their names when SHE feels like it. I didn't get to ask her about Brandon in this video because she decided she was done after the first video I took. so til another time...

Oh and in the video you notice her face LIGHT UP when she sees Britton come close to her. yeah, it's true adoration for little sis/littlest big bro.
And you hear his nickname for her. He came up with all on his own, "bubby" and most recently it's "bubby lucy" because Ryan sometimes calls him Linus because he has a blanket and sucks his thumb. They are absolutely adorable.

Big Brother Brandon, our oldest bookworm, was sweet enough to read to his little sis, her favorite book, a princess book. This video captures her love for reading but also the noise/chaos in our house nightly.

She's 15 months old now!!

Gracelyn is 15 months old now! She is so full of life... and expressions and personality and attitude! She is a one fun little girl.

she is a HAM! she dragged her laundry basket into the kitchen, found the pantry door open and pulled out the peanut butter (which she has NEVER had) and put herself, the pb and her sippy in the basket.
I love my little cupcake head, which her daddy lovingly calls her because of her hat.

Gracie is talking quite a bit and each day I am surprised by a new word. Just some of the words she says, "ball" "cracker" "uh oh" "Brandon" "more" "bye" "flowers" and of course "mama" and "dada." I'm really working on "mimi" with her because she calls her "mama" as well, she does adore her mimi!! Gracelyn has a word for both Blaine and Britton and they match the syllables of their names, I just cannot tell what they are. When you ask her a yes/no question she shakes her head no.... which leads me to her attitude. And Miss G sure has one. She knows what she wants or doesn't want to do and doesn't hesitate to let me know (which includes but isn't limited to posing for pictures.) I asked the pediatrician today about time-out and we will put that into motion immediately.

stats for Miss Gracelyn at 15 months:
height- 30 1/2 inches (50th percentile)
weight- 25.4 lbs (90th percentile)

refusing to face the camera. stinker.

Gracie loves her food. loves it. She loves pasta, most fruit, pork and chicken but not beef and now that she is weaned she very much enjoys whole milk. I was nervous about adding it to her diet with her constipation but it's not any worse since she began drinking the milk. I'm still giving her yogurt regularly and mirilax.

very few smiles for the camera these days BUT she is fulls of smiles and laughs all day long.

Gracie is quite a bookworm, which I think is a major reason she is talking so much. She and I read constantly and I love when she comes up with a book, turns around and back up onto my lap. On Wednesday nights at church the nursery workers know that she loves books too so they read to her book after book, which is great because Gracelyn is in there for a couple of hours and she beginning to adapt.

Gracelyn loves her pacifier, as much as she loves food. The pediatrician said today that we need to start weaning her from it. Oh.my.gosh. I am NOT looking forward to this. She has her pacifier in her mouth a lot and at least half of the time her teeth are clenching it and she's not sucking on it. The paci has been through a lot with her, it soothed her in the hospital while she suffered from botulism, it was her motivation in PT, to get her to roll or move across the mat, sit and lean, pretty much all actions were performed in order to get to her pacifier. In order to not sound like I worship the paci, I will say I wouldn't mind getting rid of it mainly because it's disgusting, it's a germ catcher and for the sake of her teeth.

14 months old brings independence

Gracelyn Paige is 14 months old today!!

She is quite independent (or so SHE thinks) these days and she's also pretty dramatic. If she doesn't want to do things, get in her carseat, leave her brother's room and especially get dressed, she'll arch her back and storm off. Her 3 brothers were really only a smidgen like that.

Gone are the days of cuddles or wanting to be held. Now she wants to be down, playing, walking and, most recently, running! She does bring books to me to read to her all throughout the day (which I totally love because her oldest brother Brandon did that at her age and is a little bookworm now at the age of 8!)

Gracelyn is so much fun. She still makes her animal sounds, a gorilla and duck. G loves to play peek-a-boo and will play so well by herself or with her brothers. Even at "school" in the gym, she'll go get on the teeter-totter with the bigger kids and will play on the sit and spin (which she can spin on by herself!)





Gracie is a professional at making faces, which is pretty adorable. She squints her eyes and smiles really big, which is my favorite, and is given most often when you give her food! Food is the way to her heart. G can go from happy and laughing to throwing a fit in a matter of milliseconds, even if it's over a cracker she wants. The girl does love her some food and can snack all day long.


She is sleeping so much better these days! (I actually started typing this post about a week ago and I should change that last sentence to "not so much" BUT I think she's teething so I'll blame the lack of sleep on that.) We lay her down after she nurses and she puts herself to sleep cuddling her blanket and watching her seahorse.
Really the only issue we have is constipation. We use suppositories are are up to 2T of mirilax in her sippy a day.


Miss G is talking a lot, really all you can understand is "mama" "dada" and her newest is "this" pronounced "dis" It's really adorable but she says it as she points to every.single.thing. I know I say it all the time but she adores Britton, adores him. She loves her other bros but Britton loves her and shows her affection anytime.anywhere. She calls him something but I cannot decipher it.

13 months old!

Gracelyn is 13 months old now! It actually seems like the last month hasn't gone by so quickly, unlike the month leading up to her first birthday. probably because so much happened in the last month with camping and her youngest-big brother's birthday party on top of our "normal" craziness.

she wants to be front and center

Gracie is doing very!!
She is eating very well and loving pasta, grilled chicken, turkey, pancakes, eggs, bread, cheese, fruit, most veggies and is a champ at feeding herself! G loves water and I've actually been able to get her to drink 1 ounce of whole milk so far before she throws her sippy down. I'm adding 1T of mirilax to her sippy cup each day.
Miss G is walking all over the place, still a bit unsteady but getting there. Her daddy wanted so badly to make her Frankenstein for Halloween because she still walks with her arms out for balance. (I vetoed it.) As long as she is not sleepy or fussy, she takes the trips and falls pretty well and will jump right back up.
Being a girl, she isn't quiet, she jabbers constantly, but as far as actual words, "mama" is the main word and "duck" has been said a couple of times. Her daddy pleads with her to say "dada" but she laughs and growls at him. Animal noises are plentiful from Gracelyn, what do you expect with 3 big brothers?
Despite the top pic, she is still a mostly happy girl. Gracie absolutely adores her brothers, adores them! In the morning when I get her out of her crib she points to the door to go find them, and they all light up when she comes in the room.
G is doing pretty well in CDO. She is getting less fond of me with the other babies and will want to sit on my knee if another baby is in my lap. I am so impressed with her ability to share with her friends Taryn and Ellie. The girls do very well sitting and playing together! I think it's comes from having big bros that sort of "take charge!" so they are pretty used to it.

at CDO, she loves the baby dolls!

G's 1 year stats

Gracelyn went to the pediatrician Friday!

The doc was very happy with how well G looked, and said she was right where she was supposed to be! She couldn't believe how happy Gracelyn is and how well she is walking! Gracie was all smiles, as always and walked back and forth between the doc and me.
Our only concern is constipation. Of course all the foods G likes at this point don't help with the issue so we are upping the Mirilax in hopes that it helps!
Gracie tipped the scales at an even 22lbs and measured 29 3/4", both in the 75 percentile!
The appointment took longer than normal Friday because the pedi and I reminisced on the past year with Gracelyn. mainly Thursday, March 11, the day I brought her in limp and having no idea what was wrong. We shed tears together and group-hugged Gracie, who had absolutely no idea what the water works were all about! Her seeing for herself how far G has come after how far she was set back made her day!