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.

The Iowa Fight Song

Walking from the Lipschulz building this morning on my way back to Grace I found myself humming the Iowa Fight Song. It was odd -- but I realize very appropriate.

She was having a seizure when I walked in - guilt comes so fast! I couldn't get her to sleep yesterday. There is so much going on here. Rooms are shared, there are lots of people, and lots of people poking at her.

Everyone loves her hair, and she definitely feels right at home because she is talking up a storm.

I start my formal training today on the Ketogenic diet -- I'm worried that Grace may keep us here longer than the four-five days they said. She had 2 tonic clonic seizures this morning -- she drooled up a storm yesterday - and my glasses are already covered with Grace goo this morning.

My initial impressions of the diet are that it will change our lives.... but not as significantly as I imagined. Of course it's easy for me to say that now after reading. Allison will be here in an hour or so to begin the formal training. Let the learning begin!

MRI, Rain & Hoover

Took Grace to St. Paul for an MRI on Friday. Dr. Doescher would like to have one done to see how Grace's brain has changed over the past year.

Joy came up on Saturday went out to Davanni's and then I headed home. Rained all day Saturday and drove in some really heavy rain coming home. Hoover needed rescuing as there was a little spare key for the neighbor mix-up so we played musical parents and once Joy took over I came home. Grace will go inpatient tomorrow to start the ketogenic diet.

She was doing really well today, lots of smiling well into the afternoon (usualy most smiling take place in the early morning hours). We dropped her Zonegran by 50% on Friday night and tonight will be her last dosage all together. Like the Depakote she also can not be on Zonegran while on the diet. It will be interesting to see what this week brings.

If you want to send Grace or Joy a message you can email Get.Well@childrensmn.org, just be sure to put Grace’s name, and “Ped Epilepsy, St Paul” in the subject line.

Flight Time

Grace handle the flight to Virginia without a problem. Another new state for Grace! She had her first swimming experience (in a lake too), which seemed to go well.

Grace is changing she is putting on a little weight, and when I say little I do mean little, like a couple ounces. We hit 20.0 pounds at the clinic on Saturday!

We have taken Grace off of Depakote which she has been on since sometime last fall, she can't be on it when she starts the Ketogenic diet next week. We have seen some larger seizures but she is more alive and moving around alot more. She also does not take her twice a day naps with much regularity.