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!

Elvis

Ladies and Gentlemen...Grace has left the Hospital!

Tomorrow

Tomorrow tomorrow - we're going home tomorrow - it's only a day a way.

Grace has slept most of the day away -- Kevin and I have found that when we push too hard, or too much is going on..... Grace has to crash. She did so big time today. I expect her to continue crashing until we can get her home and away from all the poking and the bed that isn't hers.

I need to keep her moving tonight - Dr. Doescher wants to see her out of bed and active. All her numbers looked good this morning and as long as her numbers stay ok tomorrow morning he says we could be out of here by noon.

Salt - 1/16th of a teaspoon

So -- We are still here! Grace's blood sugars are resolved, she is now only being poked 2 times a day (rather than every three hours). That's the good news. The bad news is that her sodium is low. The doctor looked at me yesterday and said that if we can't get her sodium figured out - this diet will no longer be an option for Grace. The mother lion in me swelled up and thought -- well then you better figure this thing out! Outside I maintained my calm and told him that we really want to do this and will do what we can to give the diet a real shot. He hemmed and hawed about if she needed 10% more salt or 20%. I thought he'd landed at 20 -- turned out it was ten %. They added 1/16th of a teaspoon of salt to her feeding overnight. They had to poke her three times this morning to get the blood we needed to run the test again.

We were also visited by an endocrinologist yesterday who ordered a few more tests to see if there is other things we need to be looking at as long as we are here--and as we fine tune the kinks! she'll be back today.

Being away from home this long is hard. My dad has been on stand by this whole week waiting for us to come home so that he can take care of Grace so I can go back to work. We have a nurse starting in our own house with Grace on Tuesday. Have we told you all that? That gives me only a few days to prepare for that and for Kevin and I to work out how the home front will be different with the diet and a nurse. I thought I'd have a week.

Sorry this message is getting long and Grace appears to be getting bored beside me.

She's one tough girl!

The doctors and Allison(our dietician) have made some changes. They don't feel that Grace's body was ready for the ratio of fat to carb to protein. Unfortunately this means that we are still in St. Paul. Sunday night Grace didn't sleep well, yesterday she slept most of the day. She just wanted to be held. I stayed with her last night- just couldn't bear to leave. She slept well and she woke up this morning with a few things to say.... and man did she scream when they poked her for the third time this morning trying to get some blood to check her levels - again.

I was told by our nurses that Grace is one tough girl. I had to agree.

We stood in her window this morning watching the cars driving by - she turned back to me at one point, lifted her arm to be held. And as I picked her up she looked me right in the eye.... and she just gave me this look that said... I know this is rough.... but we have to try -- she rested her head on my shoulder for just a moment and then tried to squirm out of my arms to get back to her car watching. ooooh I love her!

I can't wait to get her home, into her own bed, into her exersaucer - to sit in her chair with Hoover as her foot rest, and to hear that little clicking noise she makes to get to sleep through the baby monitor.

The earliest we will leave here is tomorrow - it's entirely possible it will be more like Friday. More later.

Joy

Pictures from Virginia

If You Round Up

Grace's blood sugar hit 60 and 61 last night in a row! However overnight she dropped to 51 and 54...which is way better than she has been doing overnight. Joy says the 9am test is the one they have had the most problem with. So the earliest that Grace could get out would be tonight, but if it works out she will probably stay until Monday. Time will only tell.

It's 245 miles to St. Paul, I've got a full tank of gas, half a BK breakfast sandwich, 20 oz of soda, and I'm wearing sunglasses...Hit It!

I drove up to St. Paul today to see Grace and Joy. Grace's blood sugar is still dipping low in the morning 30's but during the day she holds around 58...she needs to hit 60 three times in a row. It looks like Grace will be here Sunday and most likely Monday as well.

They hooked Grace up to an IV and are giving her something to help her with something. I really wish I could be more specific but I have no idea... Joy knows it all. There will be a great deal of learning in the coming weeks!

Hoover is staying with Jessica and Julie, his home away from home lately. Thanks for taking him with such short notice!

The Fifties

Well Grace is stuck in the 50's. 54.... 57..... 56.... overnight.

Yesterday she was much happier - and this morning she is talking up a storm - the nurses have her hair in ponytails and we are ready for another day.

We are now adding baking soda and cornstarch to her formula in order to help her a long.

I'm not sure what the plan is for this weekend - all week Dr. Frost said they had to be over 60. Dr. Ritter is the epileptologist who is here this weekend. Dr. Frost thought he might have fresh eyes for the situation.

It doesn't seem like much to report -- but its the latest.

Number game

The news overnight is good -- our numbers are going in the right direction. while they continued to be low overnight this morning she had a 78 blood sugar - the ketones are large and have been her last few checks. More blood work this morning (this week has made her so much of a pin cushion it's not even funny).

Will let you know more when I know more.

Joy

Cheesecake

I think that I could eat cheesecake all week and be completely OK!

Kevin

All About Perspective

This is a really humbling place to be - a place to realize that as human beings we are lacking in so much knowledge.... but also a place where if you are open to it people will give of themselves to you even when they have "had it up to here" and even find that you have reserves for others. Go figure.

Grace's blood sugars continue to be low, we've only hit 60 (the magic number) once. Mostly we are firmly below it. Grace has been crabby today..... but our nurse this morning told me that if I'd eaten only cheesecake since Monday at noon I would probably be crabby too--

She is about to get a bath -- meds-- and hopefully she'll hit the hay with relative ease.

We are doing some lab work in the morning and in the middle of the night in order to know what is going on. I feel really comfortable with the people in charge of this - (Dr. Frost and Allison) and I just can't make the hope down deep in me go away.... she is such a tough kid... and I think that once we can get it all figured out.. get her home and in her own crib... our girl will continue to blossom.

Joy

Blood Sugars

Well -- Grace's blood sugar dipped down last night into the 30's -- evidently we want her above 60. She didnt' show any signs of being in any distress - slept well, woke up happy! Made small to moderate ketones last night-- I have to ask about that as well.

Grace's nurse just talked to me and once she has three blood sugars over 60 we'll be considered officially on the diet.

Will touch base later to let you know what I learned.

Joy

Ketones

Grace is quite tired, she is developing little bags under her eyes, and unfortunetly the epilepsy unit is small and filled up to capacity which means more noise. However even with the lack of daytime naps Grace has not had a seizure today, this is good news as she tends to have them when she is tired or while waking up. We can't wait to till they break ground on their new addition next year that will house the Pediatric Epilepsy Unit, complete with private rooms/bathrooms! However even without the nice new facilties it is still the best possible place for Grace.

She is producing large ketones, which is what they wanted to see and now the next step is to test her blood sugar four times. I can't tell you why exactly but it sounds like they need to monitor her so that she does not have any diabetic type problems. Don't quote me on this, as I am only relaying this after a 10 minute conversation with Joy.

Now that she is producing the large ketones she is at a point where the diet becomes theraputic, she is at 2.6 and the average top in 4.0 (but can be pushed higher). If she sees results at this level they may not increase the amount of fat in her formula, however if she has a seizure(s) then they will mostly likely increase the fat content.

Joy continued her training today; there are allot of products that we can no longer use on Grace, mostly products that have fragrances added to them. No more Mr. Bubble!

Hoover was hospitalized briefly today...I found a lump on his right back leg and it seem to get a little larger over the past week. Turned out to be a cyst, but we had it removed to be certain and to prevent it from potentially rupturing and becoming infected which would be bad for him and bad for Grace. This diet can make her more susceptible to illness.

That's all I know for now, Joy will try an put an update out here tomorrow. The unit has allot of teenagers on it and available computer time is in short supply.