Why is she getting me all germy?

A little boy asked me that question tonight.  We were at the Epilepsy Foundation meeting.  The speaker had been up front a little more than half an hour - Grace was getting restless.  I got her out of her stroller and she proceeded to crawl across the floor, lay down for a rest, touch the walls, tried to pull herself up on a chair with wheels - but figured out that wouldn't work.

A boy came over to play.  Police car in hand.  He would zoom the car by Grace crawling on the floor.  She would crawl after him.  If she got too near he'd zoom the car a little faster.  At times Grace would find something else to do - but always she would return to the car and the boy.  He made direction changes - and she followed!  She crawled up close to him to look at the police car he held in his lap.  She placed her two year old Grace teething goo drenched hand on his cheek.... and that's when he asked me the question.  I said - she wants to be your friend.  He asked if she could talk... when I said no he asked if she could nod..... again I said no.  Then he took off with the car - Grace in tow.

Thank you God for boys who wonder aloud about why a girl wants to get them germy.... and then continues to play.  Seriously....thank you!  Love Joy

She's my two year old!

Yesterday was one of the tough ones.  Yesterday was Grace's annual review for Early Access (her therapy services provided by the school system).  Our living room was full with her team.  A packet was handed to us- it described to us Grace's "abilities" - 3-6 months seemed to be all over that paper - the phrase scattered up to 8 months made me breathe a sigh of relief.  Each team member then proceeded to tell us that they think they will be cutting services to Grace because she's doing so well.

Well?????  Functioning at a 3-6 month level at over two years is well????

It's such an unfair process.  We didn't have the info before, we couldn't prepare.  The questions I had prepared no longer seemed relevant.  Why don't they give it to you a week before?   It's one thing to know that Grace is behind, it is a whole other thing to have it appear on paper... be given a few minutes to review it, and then asked for questions.  And in your own home.....  I wasn't wearing shoes.... I should have been wearing a "power-suit."

Had our team lost hope?  Did they not love Grace?  Do they not believe in her?  Are we just their job?  I'm not giving up..... were they?  I cried.  I cried all the way back to work.  I tried to concentrate.

But as always it only took a little time with Grace to realize that it is my job to be Grace's advocate, my job to be her constant, my job to encourage, dream, and cheer.  I only have to do that ---  ultimately what that paper says does nothing to define my daughter.

And as if Grace felt she further needed to teach me, as she and I shopped last night at the grocery store, in the vegetable section, Grace on my hip, swinging her legs... she happened to kick over a pole that holds those plastic bags for your vegetables and fruit.  Anyhow, the roll of bags went flying the pole made a big noise - and a woman came rushing over to help me.  She pointed at Grace- poked her in the tummy and looked at her warmly saying.... you did this didn't you!  I wanted to yell -- Yes she did!   I love her!  I'm so proud of her!  She's my two year old!   Instead I said -Yup it was her - with what I imagine was a huge goofy smile on my face. That's the story I will remember - that I will tell her - and that I will tell other people when they ask about her.

No Yoga in the bathtub!

Grace has a move that we were informed is called "downward dog" in the world of yoga. (See picture of Grace's interpretation).  Last night I was giving her a bath and she wanted so badly to do her downward dog in the tub. Grace is a girl with very few rules, they haven't actually been all that necessary. However, as she sat there trying to catch the toys floating by we had our very first serious rules oriented chat. She proceeded to ignore me, and as I was finishing the talk--she did her downward dog in the tub. I just laughed and held onto her. I guess sometimes that is all you can really do. 

Thanks for listening!  Joy 

2008 Catchup

Many things have been changing in the world of Grace over the past four months, apologizes for not keeping you all posted.

As you can tell by the video link in the pervious post, Grace is now crawling! She has been progressing significantly recently and it all ties back to a change that was made in February in response to a formula change back in December. As you may know Grace is on the Ketogenic Diet, a high fat, low carb diet used to help control her seizures. Overall it has helped, but as we continued to increase the amount of fat in her formula we began adding a product called MicroLipid, basically liquid fat (think gravy, mmm). Since adding this MicroLipid and increasing it, Grace experienced increased vomiting. We unfortunately could not figure this very simple cause and effect relationship out as Grace started experiencing some of the vomiting in December when she had a little flu bug and it just never resolved. Low and behold after racking our brain with grace’s new GI, Dr. DiMeo and going over every little detail we realized that it had to be the MicroLipid. Since the early morning feed was the one causing the most problems we cut the 6am feeding and added it to the overnight feeding, we also increased her water intake to increase hydration and vowla no more issues. This all took place in early February and since then Grace has tacked on 5 pounds, started crawling, had increased energy, and she is standing whenever she can! It’s amazing what a small change makes in her life.

Currently Grace is having on the average one seizure every night; we are making adjustments in her medication and trying to make it through her current teething.

Grace Crawling

For your viewing enjoyment we now have a YouTube Channel!

Check out our first video of Grace Crawling, more soon to come!

Hurtful Hack

There was a story on the CBS Early Show on the National Epilepsy Foundation Website being hacked to display images that may invoke a seizure in a person that has photosensitive epilepsy.

This is the first known attempt in which a website was hacked in an effort to cause a person physical harm. Foundation officials are working with investigators.

Dr. St. Louis from the University of Iowa was featured in the piece, here is some info from CBS News

http://www.cbsnews.com/sections/i_video/main500251.shtml?id=3981552n&channel=/sections/earlyshow/videoplayer500202.shtml

Isotopes and Reflux and Hives! Oh My!

Grace has been having some ongoing problems with keeping her formula in. We have been venting her for twenty some minutes before feeding her getting all sort of gunk out of her stomach, sometimes really mucusey stuff and other times not so much. It seemed to start when she had a little cold back in December. After much effort we finally got into see Dr. Slovan, Grace’s GI doctor.

Grace has an isotope barium test once again she had a couple back in the late summer and fall of 2006 to test for reflux. Grace went off of Prilosec back in August when she started the Ketogenic Diet mostly in an effort to reduce the carbs she was taking in and she was on a relatively low dose so it was presumed that it would have little effect on her. The past month and half have proven otherwise and her reflux has come back, her fundoplication defiantly helps with it but it looks like she will need some medication.

Grace was started on Friday on some Prevacid, On Saturday after her second dose Grace started crying and could not be contented, she was itching her ears and her faces was turning red. Joy quickly notices the Grace was breaking out in hives all over her body. We called the pediatrician they could see her which was great news otherwise we would have had no other option be the ER, and every hospital in Des Moines is already at capacity so there would most likely be a wait. All in all twenty minutes probably pass by from the initial onset to when Grace was given a shot of adrenalin and she instantly started looking better. We are sort of like a mini-first responder team, I am thinking about getting an ambulance siren installed in the Impala.

Grace had a breathing treatment as well at the clinic as she was sounding a little rasping which she didn’t until after she broke out.

We can only conclude that Grace is allergic to Prevacid, she has started a five day course of Prevacid (steroid) to help. Rather than trying to push her on another drug we will wait until Monday before determining our next course of action for her reflux.

the caucuses, rollercoasters, and almost 2

The caucuses are in full swing.... Kevin is there... his resolutions about funding waiver programs firmly in hand. He has become such a champion for Grace, and for other families. I am constantly in awe of his devotion to families... and as for Grace... He is so proud of her and wants everything possible for her.

Lately we've been on another emotional rollercoaster. There was a possibility that Grace could be enrolled in a clinical trial - this will not be the case. Her taking the drug Felbatol actually ended up being the last straw... the drug company doing the study did not want to have her on Felbatol due to potential side effects with the study drug. Kevin and I had begun having conversations about whether or not we would take her off Felbatol - to not have to make that decision was a relief. However there was a sadness and anger in having an opportunity to do all that we can for Grace being snatched away. Kevin and I said when all this began that we would do what we could....anything we could..... always -

Currently Grace is snug on Hoover's pad with him.... he is ignoring her. She'll be 2 soon. As I think about this its impossible for me to imagine. This beautiful girl... with golden curls...who hasn't said a word.... is wise, tough, gentle, and her own person. Serving her as her mother has turned out to be so ...... I just don't know if I have the words. Perhaps what I mean .... is that being Grace's mom is a privelege... a defining role...more than I could ever have imagined. I want her so badly to know how much I love her ---

She's doing great things.... hanging out on her hands and knees... rocking like she could crawl soon.... mad when she can't get where she wants..... rolling about the house to get where she wants... she just is not giving up.

It's time for me to put her in her pajamas... get her meds... snuggle up for our goodnight snuggle and sing her our goodnight song.

Goodnight Gracie. Goodnight Gracie. Goodnight Gracie. Your daddy and I love you.
Sleep well Gracie. Sleep well Gracie. Sleep well Gracie. Morning will be here soon.

It's simple... but I think she knows it.

Going to the Chapel

Uncle Jason, my new Aunt Lindsay, and me!

Squirm

Grace has learned to squirm, not only can she squirm but she can flail handfuls of slobber as she continues to flip, roll, twist, wiggle, lean, and flop.

Grace no longer likes to just sit and hang out; she is standing like a champ. Her gait trainer is working wonders! She moves around so well that we are desperately trying to figure would what can go and what should stay in our house to give Grace more room to travel. Her gait trainer is like walker except it forces Grace to stand and encourages more natural positioning of her feet to develop her walk/gait. The deck base of it covers apx two and a half feet by two feet, so her turning radius it rather large. It looks like we will be making the supreme sacrifice and getting an HDTV and mounting it on the wall to get rid of the large TV cabinet.

Tomorrow morning we shall be up bright and early heading to Julie’s for Grace’s 5:30 respite rendezvous and then off to pike up Martha and possibly Suz and head off to Omaha for the Epilepsy Foundation’s HOPE Conference. While Joy and I are learning, meeting people, and making connections, Grace will be practicing her ballet routine with Otis in Jessica’s room.

Trick or Treat

Pumpkin Farm

Adventureland - September 2007

Pictures

I am just getting around to posting some pictures, enjoy the backlog!

Addison, Zoe, and Gavin

I have the privelege of friendship with the parents of the children I've listed in the title of this entry. Addison and Zoe are in Grace's age zone. Try as I might it is hard not to compare. Gavin is a new guy to the world - I've seen him do things in his short life that Grace never really did. Addison I saw eat cheetos. She used her fingers in ways that are so complex, she points at things with only her index finger, and ate cheeto after cheeto as fast as her mom could give them to her. It was marvelous.

We are wonderfully made -- all of us.

Today someone pointed out to me that Grace is almost two. I would take her to the infant room at church, while several of her peers have moved onto the toddler room. What room is better for her, what room will meet her needs? Will the older kids make fun of her? How will our friends explain to their children about Grace? Do they need to? What about that kids that we don't know their parents? What will they say when their kids come home and ask them about the girl with the tube in her stomach or the girl who made funny movements.

As Addison, Zoe,and Gavin grow I pray for their understanding, for their acceptance of Grace. For Jenna and Miles, for Nathan, for Joe, all kids that I know. I also pray for those who don't yet know Grace and will be the characters that make up the stories of her life. I also pray that Grace will know her part and do it well in the lives of Addison, Zoe, and Gavin - Jenna, Miles, Nathan and Joe.....

Band From TV tonight on the Tonight Show

Please tune in to see Greg Grunberg on NBC's 'The Tonight Show with Jay Leno" on Friday, October 19 (11:35 EDT/10:35 CDT) as he promotes epilepsy awareness and Band From TV's ( http://bandfromtv.org/) new CD release. As many of you know, Band From TV was created to provide funding and resources for several incredibly worthwhile charities around the world. Greg, the leader of the band, chose the Epilepsy Foundation as his charity of choice in support of his son, Jake.

Straw Wrappers

It is so hard for Kevin and I to reach out sometimes -- we'd prefer to just do this all ourselves-- never show that we have weaknesses-- never show that we feel discouraged-- but I feel often those times are when I choose to write.

Tonight I want to tell you a happy story. We had Grace out to eat with us earlier this week, and as we ate she played with straw wrappers and napkins. When we got up to leave we cleaned the shredded ones up off of the floor. Our little girl had made quite a mess! We were thrilled!

Grace is doing well. She currently has a cold and I think that this teething thing (and all the corresponding drool) will never end... but she is sassy, stubborn - playing, squealing, smiling, playing with her musical dolphins in the tub, and giving so many wonderful kisses.

She is amazing!

Ode to Kevin

I've been in LaCrosse this week.... man I love this place.

Kevin has been home with Grace, and is just phenomenal with her. A call came in today with the opportunity for him to go and tell our story in order to help others. He jumped right in the car so that he could help. I love him. Grace is a lucky girl

Causing a Ruckus

In church on Sunday Grace and I had to sit in the very, very, back. She is again making the pbbbttthttt noise and the spit just flies! Bob, the janitor at church walked by and told me that Grace looked healthy to him, but he hoped that soon she'd be running around and raising a ruckus --- He gets it!

Our life seems to have settled into a sort of routine.... the ketogenic diet is very strict - tonight we went from store to store to store to find ketogenic friendly diaper wipes. My husband, bless his heart, ended up just coming home and ordering us 5 cases on-line. How crazy is that?

Having a nurse at the house is so wonderfully refreshing. We are no longer getting calls that scare us at work..... Hoover has found that he can beg and get extra treats, and both Megan and Lisa seem to love Grace very much. And though it is odd to have a medical chart in the kitchen, and cumbersome to have a doctor's order for the day to day changes that arise, there is a certain peace.

Joy

Home is where the heart is?

Home is where the heart is...... I'm not sure that's true today. My heart has been in Des Moines and St. Paul the last two weeks... split between the blonde-haired blue-eyed man that I love and the little blonde-haired blue-eyed girl we had together. How can home be in two places?

Home is where your family is. Where the basset hound barks at the mailman, where the next store neighbor grins as she works happily in her yard, where your little girl smiles at ceiling fans, where your husband doesn't clean off the stove top after he cooks, and makes you laugh with gusto because of something funny he said.

If the last two weeks have taught me nothing else..... it has taught me that sometimes there isn't a whole lot of difference between what is simple and what is complex.

1/16th of a teaspoon of salt allowed us to come home....... 1/16th of a teaspoon of salt assures that Grace's body will remain healthy as it learns to take energy from fat...... 1/16th of a teaspoon of salt means that one of us has to stay up later in order to make sure that Grace gets that salt..... 1/16th of a teaspoon of salt led to the purchase of new measuring spoons.... 1/16th of a teaspoon of salt may allow our daughter to smile more, laugh, learn..... 1/16th of a teaspoon of salt...... it's unreal to me even now as I sit here knowing that most likely I am failing miserably at getting my point across..... but I ask for your patience and want you to know that it makes sense to me!