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.