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!

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.

Cicada Killers and EEG Glue

Since we last touched base with you we've been in recovery mode.... trying ........

There is always something though -- we have cicada killers in the front yard, the Orkin man can't kill them.... the post office won't deliver our mail.... and you can only really kill them at night.

EEG Glue -- Grace was in Minneapolis on Monday of this week ---- they were so impressed with her. Her EEG is continuing to improve and although there are still abnormal impulses they seem to be primarily coming from the left side of her brain. we'll be getting an MRI in the near future to get a look at her brain and see if there is any explanation for this.

We are scheduled to begin the ketogenic diet on Aug. 20th. Our little girl will be getting a diet made 90% from fat. Hard to imagine.... but we are anxious to get her on it and see if it works, if it doesn't I want to cross it off the list of possibilities and just keep going. (Evidently I'm in anxious mode)

We have had some trouble at daycare with concerns about how Grace is being cared for. I had a long meeting tonight with Grace's teacher and the Director... Kevin and I know this is an important decision, and at the moment I'd say we are a little stymied. My parents, and our friend Jennifer have been pitching in -- all three truly love our little girl.

She is sitting on her own when placed in that position. She is really starting to look like a little girl -- not a baby. I really do think our love for her at times makes us feel so powerless..... luckily there are things we can do......Kevin can kill the cicada killers and I can keep on combing out the glue.

Love Joy

Doing Well Overnight

Grace continued to eat 2oz feedings every three hours through the night with no problems. This morning she was occasionally smiling and was sitting up with minimal help. Waiting to hear from the surgeon on whether she will go home tonight or tomorrow.

Eating!

Grace has taken four two ounce feedings today through her g-tube and has had no problems. Dr. Irish, Grace's pediatric surgeon, says we may be able to go home tomorrow if she keeps up at this pace. He is really happy with how well she is doing! We would like to not rush it but it would be nice to go home...and Hoover would like company.

She hasn't had any morphine for pain today, just Tylenol. She must be tired as she has conked out already.

Out of Surgery

Grace is out of surgery and everything went well, no complications. The surgeon was very pleased with how the proceedure went. He didn't have to seperate the stomach from the inner wall of her body where her g-tube is located (stomach and abdomen have fused together as the g-tube pulls the stomach forward).

She is sleeping now and has been most of the afternoon. She was given some morphine as she was showing some signs of pain and this is very unusual for Grace.

In Surgery

They made the first incision at 9:50am, so far everything is going well.

Fundo what?

Go here for more information:

http://www.webmd.com/heartburn-gerd/Fundoplication-surgery-for-gastroesophageal-reflux-disease-GERD

fundoplication --- not much fun!

We were able to bring Grace home from the hospital last night. She made it through the nuclear imaging study on Thursday which found that she is continually refluxing, most likely it really hurts her, the surgeon told us yesterday that some adults think they are having a heart attack when it happens to them.

We are not jumping up and down to have any surgery done on Grace, but if we do this now any damage that has been done can be healed, Grace will be able to gain weight which will allow her to become stronger and may offer us further options in regards to seizure medication. It will be a slightly tricky surgery in that her g-tube is already in place -- please pray that it will not have to be removed during surgery and then reinserted following the fundoplication.

Grace will have surgery on Wednesday and then be in the hospital for several days following that. In the meantime we have her hooked up to a pump getting a little over one ounce an hour of formula. We are to have her hooked up 20-21 hours a day. Tonight we are taking her off for a little bit so we can attend an event for Hoover. At work over the winter we talked of getting all of our dogs(and families) together for some chasing around......tonight is the night and thanks to Suzi Hoover hasn't been as entirely neglected as he would have been........ but this night in the Harris Household is all about him.

Joy

A few words......

Today Grace and her Grandma hung out here at the hospital. Unfortunately we weren't able to do the test today as some of the isotopes they look for on the nuclear scan are still in her system. We are scheduled to try again tomorrow. Not much else to report.

Throwing Up and Pbbbbbbbt

Well Grace is back in the hospital..... we took Grace to the pediatrician Monday morning and he sent us here..... we were approaching dehydration... we actually had crossed the line a little bit but she got hooked up to some fluids and a slow drip is now providing her with some very important calories. She had a test this morning to look at her reflux - she threw up 16 minutes into it.... we have to do it again tomorrow. If it is reflux we will have to look at a surgery as we have exhausted all medication avenues.

Since we last wrote we seem to have been very busy --- Jennifer and Cori have both left, we miss them both and are getting to know the new people who are taking care of Grace -- I just get overwelmed when I think about how much they both love Grace.

Kevin has started a new job -- regular hours... no weekends! All the red and Khaki has been thrown away.

I submitted my grant application to hopefully further my employment with IDPH.

Grace (despite the throwing up) continues to make great strides, and her hair just keeps growing and getting curlier. She has a few new tricks since we talked with you last, she will lift her chin to you when she wants to be kissed, and makes this great noise with her lips (the pbbbbbst I mentioned in the title). She was so funny when they were putting in the IV - cry and then pbbbbst....cry some more than pbbbst.....pbbbst --

We'll keep you as up to date as we can.... if she could just have an hour of not throwing up tomorrow morning that will sure help us know what to do next. My Mom is here today and tomorrow to help with Grace ---- so glad she's out of school and not fishing yet! I think that's it -- I'll write more later to let you know.

Joy

Grace and Kevin are sleeping

Grace and Kevin are asleep upstairs on the couch -- I myself am quite tired, but feel the need to share with you our last week or so. Prior to Monday Grace hadn't had any seizures for 13 days --- we enjoyed this so much. On Monday she had thirteen or so seizures and we ended up in the ER, were admitted to the hospital, and found ourselves putting her into her hospital bed at midnight. She had two brief seizures on Tues. morning, but they never found anything and so they let us take her home Tuesday evening. The good and bad thing about crises is that you learn how many people are on your team..... and if your team is as big as ours you just hope for good communication. Luckily we have an awesome team...... people who care about Grace deeply -- want what is best for her..... and are willing to answer all of the questions we can throw at them.

We were deeply touched to recieve calls from her therapist's asking how "our girl" is. My boss Tom once kind of laughed at me when I told him that I have come to believe it takes a village to raise a child.....(I told him this before he had his own kids -- twins, perhaps he's changed his mind.) Our village has so many wonderful people in it - the people who pray... the people who don't mind when we vent.... the people who don't say poor baby... but oh what a beautiful baby... the people who read this and then tell us what they think about what they read...... aunt Amy who knows just what kind of dolls to buy... I could just go on and on. We learned this week that we are losing a very important person in the village.... Grace's teacher Jennifer has decided to move on and do something else. Jennifer not only has loved Grace - but has been a wonderful comfort to Kevin and myself. I'm not sure how I will ever explain to Grace about the importance of Jennifer in her life...... another village person will be leaving us shortly as well, Grace's OT Cori will move to Minnesota in June. I just can't bear to think of that now...... these people Jennifer and Cori...(and others) have become members of our family... I know it's just their job --- but we don't feel like their job..... we feel like treasured people.

I want to go check on my family now.... I haven't heard anything so I imagine that Grace snug in her "chickie" pajamas is laying with Kevin on the couch --- both of their heads tilted slightly to the left...and Hoover is curled up in a ball on his pillow dreaming of catching rabbits and running along the fence line with Suzi. Thank you for listening.

Joy

NBC Heroes Artwork Auction for Epilepsy

Want to own cool collector’s artwork and original signed drawings from one of television’s biggest hits? At the same time, do you want to support epilepsy awareness and research? Now you can; a special auction of Heroes artwork will benefit the Epilepsy Foundation.

http://www.epilepsyfoundation.org/heroesauction/

Parents of Day Care for Exceptional Children Day at State Capital

DES MOINES, Iowa - With service cuts looming in the near future and with no solid legislative solution in the works the Parents of Day Care for Exceptional Children are taking matters into their own hands. Tuesday, April 10 at 9am parents and their children along with friends, family and past daycare families will gather at the state capital to ask for the legislature’s support in working towards a solution that will not result in any mental health funding cuts.

Currently the Senate is planning to provide an additional $11.7M in funding to counties for MH/DD services. Unfortunately this does not solve the funding shortfall as the counties need $16M - $19M in additional funding on top of the pre-appropriated growth of $4M to prevent service cuts.

If you would like more information on the day at the capital please contact us through the comments in the lower right corner of this post.

3 Trips to the Doctor & not for Grace

Well this week we have been to the doctor three time just not for Grace. I went in to get a shot for allergies on Monday while at the same time Joy was at her doctor only to find out that she has pink eye. Today I went back to my doctor and what do you know I have pick eye too, just not as bad as Joy had it (well at least for the time being).

Key Facts About Funding Shortage

Here are some facts that you may want to use in your communications with your elected senator or representative:

Disability services are funded through State funds and county property taxes.

County property taxes are frozen at the 1996 and the state is responsible for funding cost increases. The state agreed to make up any increase in costs in exchange for allowing the tax freeze on disability services.

Over the past several years, the State has under funded adult mental health and mental retardation services.

About 67% of people receiving disability live in counties with financial difficulties.

Polk County faces a $6.5 million revenue shortage.

As many as 900 Polk County citizens with disabilities could experience service reductions or no longer be eligible for disability services.

Please write your State Senator and Representative

Don't worry about making your email or letter to your state senator or representative lengthy for full of facts and details. Just by you asking what they intentions, thoughts, interests are with the mental health disparity or lack of funding for mental health services that the state is facing in the coming year will be enough to put it on their radar screen, and the more blips they get the more likely they will act on it!

Grace Needs Your Help

We have been busy through February and haven't posted anything here in a while. Grace is doing well and making some great gains thanks impart to the time she is spending at Daycare for Exceptional Children. They specialized staff members, adaptive equipment (that we could never afford), and lots love thats helping Grace catch up developmentally and physically.

Daycare for Exceptional Children is in danger of closing due to a lack of funding available through Polk County's Mental Health Services. This lack of funding will include cuts to Meals on Wheels, Prison Mental Health Services, Job Coaching for persons with disabilities and many others come July 1.

Unfortunately no one is really working towards a solution. We need you to contact your local state senator and representative and ask them to restore mental health funding statewide. This is not just a Polk County issue it will effect all counties, some more harsh and quicker than others.

For more information please see the Polk County Funding Crisis Page.

Here is the text from a letter we already sent to all of Iowa's Senators and Representatives, feel free to reference Grace or ourselves in your communication:

We are writing on behalf of a little girl we’ve only known for a little over a year – our daughter. When Grace was diagnosed with a rare form of Epilepsy at 4½ months we were devastated. Now eight months later we are beginning to find order and resources to help Grace.

In addition to Grace’s intractable Epilepsy she has severe acid reflux, hypo-thyroidism, a G-tube for feeding, and has been diagnosed as mentally retarded with an two to four month level of development at one year of age.

Daycare for Exceptional Children is pivotal for our child. Grace has been there only a few months, but already she has made great strides under their care. We are very afraid about the potential of Daycare for Exceptional Children closing July 1.

Without Polk County funding to assist in paying for daycare we would not be able to afford these services. We ask that you do what you can to restore the funding to counties that the legislature in the past cut (18 million) due to a lack of funds statewide. Or if it is possible to remove/raise the cap counties can tax their residents to pay for services like Daycare for Exceptional Children.

If funding is not restored we, like many other families, will no longer be able to afford to send our child to Daycare for Exceptional Children, which will result in its closing. The specialized care provided at Daycare for Exceptional Children costs $9 per hour (partially paid for by the family and Polk County) which is less than what other providers charge.
Our other options are:
- to hire a licensed nurse to supervise feeding and medications in addition to paying for daycare services though another provider
- one of us leave our job in order to stay home with Grace to care for her needs which will result in us having to sell our home and move into an apartment
- or move out of the state that we have both been born, raised, educated, and lived most of our adult life in order to find the level of care that Grace needs.

None of these options are what we want for Grace, as we truly believe that the equipment, socialization, and activities provided by daycare are the best. We want the best.

If we can answer any questions or provide you with further information please let us know.

Kevin and Joy Harris

Snow Angel

On the way to Minnesota

Taken at Wendy's on our way to St. Paul for Grace's February check up at the Minnesota Epilepsy Group.

Is one still a baby?

Kevin and I have been wondering if when you are one are you still considered a baby? As we looked at her at the time of her birth (one year later) we were speechless - she is nothing that we expected and everything that we love. I have to admit that her turning one has been very difficult for me -- that I will continue to grieve as milestones pass is a harsh reality sometimes-- other times I think I'm crazy to grieve -- she is wonderful! She was actually a little under the weather on her birthday, but happily we are going to try and celebrate at a later time with cousin Nathan. Tomorrow we go to get her one year pictures taken -- we will share them with you I promise! She is a beautiful little girl - great cheeks... at work they look at her pictures and talk about how you could just pinch them! If she would only weigh 20 pounds I could turn around her car seat -- I am seriously looking forward to that.

Daycare is going well. This is her last week with Grandpa - but of course he'll always be able to pinch-hit! Thank you all for checking in, we most definitely appreciate it.

Cardio Workout

Went to the Cardiologist today, they ran an EKG, an X-ray, and an Ultrasound and no murmur can be detected! We don't have to go back to the Cardiologist!

Grace has a cold, but the nice thing it's just the ordinary run of the mill cold, it took us some time to figure out how to handle a normal person sickness. She is sleeping alot and hopefully will return to herself in another day or so.

We've got a long way to go and a short time to get there

Made it to Story City last night thanks in part to about 3 gallons of caffeinated Pepsi products, Fareway Ham Salad and Jalapeno Pringles (I don't recommend).

We stayed the night at the Comfort Inn and hit the road again at 6:30 this morning. Joy went to work, Grace went to daycare, Hoover came home from the Kennel and Kevin will go to work tonight.

Grace will get her 6 month immunizations today and along with her "mickey" button for her G-tube.

First EEG of the New Year!

We are in St. Paul right now we came back for a followup appointment. We have some good news! Grace's EEG is showing more organization in the brain waves, in November she was showing just a little organization in the waves. The nigth terrors she si having are not seizures as we feared. We are going to continue on with the Felbetol and push it a little higher, we will closely monitor her levels in the coming month. We will come back to St. Paul for another followup in February, if we see continued improvement we will keep on going, if we don't we will look towards another treatment either a drug therapy or the ketogenic diet.

We are on the Pediatric Epilepsy Unit at Children's visiting Grant and his mom Jannelle who to our church and they are also the ones that gave Hoover to us. We should be taking off shortly for the drive home.

Early Christmas Present

As you can see from the previous post, Grace went to daycare. We got a call last Thursday the 22nd and were told that Grace was one of 50 people approved for funding through Polk County to help out with Day Care for Exceptional Children's cost! This was a huge early Christmas present! When I say huge I mean really really really big and overwhelming. We were told that we would not get funding until 2008 if we were lucky do to some squandering of funds and political bureaucracy, imagine that. Grace will go back for two days this coming week and we will do that for a couple weeks and then see where we will go from there.

Hanging out with Friends

Well, we are all feeling better. Grace made it through her first Christmas. It was actually pretty quiet on Christmas day... we went to the local Chinese buffet for Christmas dinner.... it was packed! Grace fell asleep while we were there so obviously it wasn't too exciting -- but it was nice just to be the three of us. (four counting Hoover--- but he of course didn't go to the restaurant with us).

Grace also made it through her first day of Daycare for Exceptional Children. I was perhaps more overwelmed then she at the prospect of this, but her teachers loved her... and she was kept very busy. We are hoping this will help her sleep tonight, she has been waking up at 4 ready to go.... ugh!

On her report card it says she spent 1/2 hour "hanging out with friends" -- how cool is that she no longer has just us.... she has friends!

Kevin

Grace is still in the hospital, they tried some formula last night and she began throwing up again around 4 am. I got sick last night as I was gathering things to take back to the hospital -- and continue to struggle.

Kevin is holding down the fort for Grace and myself. And he is doing really well at it. Please keep him in your prayers... for strength, patience -- and health!

PS -- If anyone wants to go to Blank and give him an hour off -- I'm sure he'd appreciate it.

the ER

Grace was in the ER again yesterday morning.... she began throwing up late Saturday afternoon and was keeping nothing down. They admitted her to the hospital yesterday afternoon to make sure they could get some fluids in her and so they could give her medications by IV until we figure out what is going on. This is somewhat discouraging.... two ER visits in 8 days... but I'd much prefer she be there, because there is nothing scarier than watching her turn purple trying to vomit..... what a cheerful message for so early in the morning! Anyhow Kevin is with her now and I am rounding up some things to be able to get back to them. Think good thoughts!

Grateful for the little things

It's been such a mixed bag the last few days....

Grace is producing steroids as she should... she is free and so are we,
but --- the thyroid came back abnormal, this is responsible for growth and will require another blood test on Thursday.

A trip to the ER for a "normal" baby problem leads to further tests, there is the possibility that Grace could have "reflux of the kidneys"...

we are stymied by having to make a decision about daycare... it was scary the first time to make a decision, but now I am honestly petrified about where we should put her - how we will pay for "specialized" care - and if anyone but my dad is "good" enough to take care of my baby.

But... we can take her to see Santa --- and she is able to put weight on her feet longer, and Kevin called me this morning all excited because she was giving him little half smiles and making great noises. I wanted to come home. That's enough of a good thing for today---- we can keep going tomorrow.

Out and about

Today we went shopping as a family, it's been a really long time since we have does this. Naturally Grace slept through the entire experience. We were really looking forward to her being awake and taking everything in. But we are all really tired from last night.

ER Sleep Deprivation

We visited Blank ER tonight/this morning. Grace has been vomiting her formula, baby food and medicine. This was sporadic but starting to get more frequent. Tonight she threw up a large amount of formula and all of her meds. We re-dosed one med and within minutes is was back up and she was gagging and grasping for air. We called Dr. Slovan the GI on-call and after discussing the issue he felt that the G-tube may have moved, etc so he wanted us to go in.

They took X-rays but everything looked fine. They ran a but of blood tests, levels on all of her meds and several others. Turned out she has a urinary tract infection. This doesn't have anything really to do with her immune system it is just one of those things and apparently vomiting is something that comes along with it. They gave Grace a shot and a script for an antibiotic. We will see how she does.

Grace had several seizures, two while in the ER, they were harder than normal but she was never able to keep her evening doses of meds down. It will be interested seeing how her seizures react if we can get the vomiting under control and she can keep her meds down again.

Hello World...

We got the result back from the blood tests Grace had on Wednesday. Her body is producing the steroids it should be and her immune system is back to normal! So we can immediately rejoin society and see the world!

We were not expecting the results this quickly but we are not complaining...Grace has been vomiting and the GI doctors wanted to make sure everything was OK with her adrenal levels so they ask Dr. Cook to make the lab run the tests today.

Dr. Cook is our Endocrinologist and she has said that we shouldn't go all crazy as Grace has not been exposed to much so even though her immune system is back she has no tolerance against any sickness, etc.

Steroid Test

Today Grace went in for a test to determine if her body is producing enough steroids so that her immune system is back to normal. They had to draw blood from her every 15 minutes for an hour. The results will take a week.

Sleep Spindles & Organization

We had our followup appointment on Nov 20 with Dr. Doescher at the Minnesota Epilepsy Group in St. Paul, we had an EEG and then met with the doctor. We got some good news!

They were able to detect sleep spindles in Grace's EEG while she slept, this was something that was not present before and would be seen in a normal EEG. They also were able to see a little more organization in her brainwaves during awake time. So they believe that the new medicine, Febetol is starting to work! We increased it on Monday and will most likely increase it again on Friday, it will all depend on seizure control, we are still have a couple a day.

We will go back to St. Paul on Jan 8 for our next followup, we hope that there will even be more good news to follow!

Custodial Care

We got tuned down about a two weeks ago for nursing care for Grace. It's really annoying when multiple doctors say with confidence, she gets a G-tube and you will get nursing hours the next day. We were denied because Grace's care is considered custodial, but then again any infant care really is custodial.

Fortunately Dale is in for the long haul, which we may need.

Hopefully they new state legislature will get to work right away and spent part of the 300 million surplus on programs we need and not giving tax breaks! If they could just clean up the waiting list for the waiver program (Medicare) we would be able to get funding for some additional services that will be crucial as Grace gets older. If you have some free time please feel free to write your state senator or representative (http://www.legis.state.ia.us/FindLeg/). Currently we are on a 12 to 18 month waiting list for the ill and handicap waiver and at least a 24 month for the brain injury waiver. We ultimately want to get on the brain injury waiver as this will provide some specialized services for Grace's condition.

Mall, Menards, Target, Fareway -- Oh the Places We'll Go!

Grace is crying in her crib behind me, still wide awake and 10:25 pm. The medicine she is on really makes her wired! I'll have to rock her soon... this parenting for sleep thing is extremely complicated and we never know if we are doing the right thing.

Grace had two clusters of seizures today both around 4 minutes... we had been in the 8 to 10 minute range so this has been a relief. We leave for St. Paul Sunday afternoon, her appt. with the epileptologist is at 2 and there is an EEG scheduled for noon.

She has yet to spike a fever or throw up a lot so I am hopeful that we will really be able to go off of the steroids. I heard Kevin talking to her this morning about all the places he wants to take her once she is able to join the world. I have been thinking about that a lot as well. (Heather and Drue we are coming to see you!)

Grace is continuing to become stronger, more active, seems to be figuring some things out. this sleep thing right now is HUGE though. We have stopped bottle feeding as it upsets her way too much. My motherly instinct is to feed --- and while I would love to have that time holding her and having her drink out of a bottle, it's not pleasant for her or for me.

I never knew that parenting could make you feel so helpless. But I think that Kevin and I are being very strong....

Joy

Daycare for Exceptional Children --- Here's Gracie!

We saw both Dr. Kabbani today and Dr. Cook. Both were amazing.

Dr. Cook wants us to take Grace off the steroids as of today -- then in three weeks we'll go in for a test to make sure that her body is producing the steroids that it should. If all goes well Grace (and us) will be able to join the world in three weeks. I have to be honest -- I am cautiously optimistic about this. I don't want to be disappointed -- I don't know that I could take that.

Dr. Kabbani let us know that Grace's EEG continues to look the same - no worse but no better. This is amazing to us because she is doing such wonderful things. Playing, crying, standing on her own two feet (with assistance) - she is very close to sitting all by herself, she babbles, she plays and reaches for things. We were hoping this meant good things (like an improving EEG). Kevin called and I followed up with the Minnesota Epilepsy Group today-- we are increasing the med dosage again.

Today my heart is sad for her, and for her future, but I hear her now playing with the bird on the mirror -- talking-- and when I turn around her little self is in snowman pajamas with feet -- and I feel small rays of hope.

Joy

Amazing Grace

I forgot to mention yesterday that Kevin and I were able to get out last night and go see Chris Tomlin.... because Suzanne decided that she would share her mom with us. Thank you Suz.

Home Sweet Home

We have been home for almost a week now. Grace's medications have been changed slightly as the seizures continue, she still has not had more than 2 clusters of seizures a day, a couple of days none and some days one. We are thinking that ultimately we will end up having to give the Ketogenic diet a try. We are set to return to St. Paul for the day on November 20 to meet with Grace's epileptologist and she will have an EEG while we are there.

The new medication she is on keeps her wide awake... we have a had a few really late nights and both of us are tired. We are adapting to the G-tube, but Grace seems to have embraced it fully! Our OT says that Grace is quite smart and has learned that it is easier to be fed through the tube then to work the whole sucking thing out when presented with the bottle. This bugs me... I'm not sure what to do about it yet but I'm looking at some options and making some calls!

Kevin is working this weekend and I am trying to get things in order here. We have a busy couple of weeks ahead of us which is quite daunting to think about so we are trying to be as organized as possible. We have quite a few doctor's appointments for Grace here, I have several work deadlines, we'll be headed to Kevin's parents, and I think that's it, but, it is enough!

There is a possibility that we will have home health nursing set up towards the end of next week, which means that Dad would no longer be so "scheduled" in his well earned retirement. We have recieved many gifts and blessings but the gift of his time, my mom's willingness to share him, and his willingness to deal with things outside of his comfort level is amazing and beyond belief. I don't really know how we'll explain that to Grace someday.....

I normally leave this blog to Kevin -- but several people have asked so I thought I'd include my thoughts.

Joy

Day 10 in St. Paul

Grace is doing incredibly well! She is more awake and alert, and has been sitting up being supported or in her therapy chair off and on for about an hour total so far today. Grace is off of the Iv antibiotic and going to an oral version that she will be on the next 8 to 10 days.

We are going to increase her Febeltol today and add a vitamin(?) that will protect her liver that can be harmed by being on the Depakote.

Labs are all looking good.

Three days without a seizure!

Should go home on Sunday!

Day 9.75 in St. Paul

Today went well for Grace. No seizures all today, so the Febetol must be doing something. Granted this could also be the honeymoon affect that we have experienced on many other meds.

Grace had no Tylenol today and she does not appear to be in pain, she was awake a great deal more and sitting up well and holding her head up really well.

We are completely off of Topamax now the really bitter tasting medicine that Grace was taking.

Dr. Doescher really wants to "clean" Grace up with the number of meds she is currently on, I would suspect by the time we return (if we need to return) to start the ketogenic diet that she will be on only two or three anticonvulsants and maybe Prilosec, we may even be able to eliminate that one as well. Who knows time will only tell?

Most likely looking at being discharged by Sunday.

Day 9 in St. Paul

Grace slept pretty well last night this is the first night since mid August that she has not been fed overnight. She woke up around 4am and took a couple ounces.

Her blood cultures are still not quite right, they want to make sure any infection is knocked out before discharging her. Dr. Strafford who did the surgery and is handling the followup believes that we should be able to be able to go home Saturday, Sunday, or Monday.

Day 8 in St. Paul

Grace's fever broke last night, our Epileptologist spoke with our Endocrinologist in Des Moines this morning and they decided to keep her at the triple dose of Hydro-cortisone for the day and possibly the next day, she will have no problem resuming the tapper of the Hydro-cortisone after we get over this little hurdle.

She has taken 2 - 4 oz bottles already today, she had a 1/3 of an ounce left in the second bottle so they put it through her tube. The idea now is to feed everything by bottle and what she does not take we tube. So if this works we will not need to run the pump at night anymore. We may need to run the pump during the day at times depending on how much she won't take by bottle; we need to shoot for an over the day amount.

They did X-rays this morning to make sure everything was OK and to help rule out any internal issues as to why she had the fever. Her white count went up last night after she got the Hydro cortisone. They are going to keep her on the Iv antibiotic and give her Tylenol and ibuprofen in rotation to keep her temp normal and to help prevent any further infection.

Day 7.75 in St. Paul

Grace had a fever of 102.1, her regular Hydro-cortisone (steroid) dosage seemed to help break the temp, she's down now to 97.1. She got a sponge bath and they are going to triple her Hydro-cortisone tonight to help fight off any infection from the steroid. She is also going to go on antibiotics by Iv versus the oral ones she has been getting since the surgery now that her temp has been running high.

Day 7 in St. Paul

Grace did well overnight, she hasn't been awake all that much today on and off for 20 minutes max at a time. She took a half a ounce of pedialyte which was her first thing in her stomach in over 24 hours minus her medicine. She just finished taking a couple ounces of formula.

They gave her morphine three times to help with the pain and she is getting Tylenol every four hours by suppository.

She is on the Febetol now and her dosage is being increased each day, this drug is an anticonvulsant; we are also tapering her off of the Topamax another anticonvulsant she will be off of this medicine before we leave. Grace is also off of Carafate as of today.

The GI doctor that performed the surgery stopped by and loosened the plug on Grace's stomach a bit to help with some discomfort.

Photos of Grace & Hoover

Our photos are online. Click Here to see them, when the page load click on Kevin..., grace is the password.

Day 6 in St. Paul

The surgery to put the G-tube in went good. No complications.

She has lots of equipment hooked up to her, tubes going everywhere. She has a potassium drip, we are hoping that she will smile again, she really smiled alot after being on a drip at Blank back in August.

Her esophagitus (acid reflux) is looking much better so we are going to take her off of Carafate that was used to coat her esophagus.

We are also going to start tapering Topamax and eliminate that medication; we don't think Grace will mind. It has a real bitter taste and is the hardest to get her to take.

Day 5 in St. Paul

This morning Dr. Frost wanted to start Grace on Febetol (spelling?) as she is just having too many clusters of seizures to not try and do something for them.

We just got word that we will have Grace's surgery is scheduled for 10:15am Tuesday. She will get her G-tube put in. They do not want to start the keto diet yet they first want to make sure there is nothing wrong with her tube and it gets healed up before heavy use. We will be here until at least Friday will probably head home on Saturday.

Day 4.5 in St. Paul

No Day 4 entry, Sunday was pretty uneventful. We are back at the hospital early this morning as we didn't want to miss any of the doctors doing their rounds. Grace got a roommate in the middle of the night. Shared rooms are the only real downfall of being here at Children's. It's too bad they don't have more space or less clients so this would not ever be an issue. They are pretty land locked plus the building would not be an easy one to add onto do to it's design.

Day 3 in St. Paul

Yesterday we seemed to just wait around. But mid-afternoon the doctor that was doing rounds came to visit us. He is an epileptologist with the same group but with an adult specialty. He was very nice and easy to work with; hopefully he will be with the Minnesota group for a long while so we can work with him down the road.

We made the decision that we will go with the Ketogenic Diet, we found out that we have an appointment on Monday with the keto dietician. There was some confusion as to if we can start the keto diet right away after Grace gets her G-tube, looks like the timing is not a big issue we can start the keto diet with the NG-tube. So we will need to discuss the scheduling with the GI doctor also on Monday. He has trying to contact our GI in Des Moines on Friday but they were not able to connect. It will probably be Tuesday (at the earliest) before they schedule her in.

The G-tube procedure puts the tube down her throat and pushes out through her stomach wall and through the skin, then there is some sort of plug that we will be able to open up to feed her. The big reason for needing this tube for the diet is that since her feedings are specially calculated she needs to eat everything that we will give her. So if she won't take it by bottle we give it to her by tube. Even later on when she starts eating real food she will need to eat everything given to remain in the state of ketosis.

Day 2 in St. Paul

We read up on the Ketogenic Diet and also got our hands on a book put out from John Hopkins that is said to be the reference book when it come to Ketogenic Diet.

Met with a GI doctor today, he would like to see Grace get a G-tube put in independently if we go on the Ketogenic Diet or not. He said the max his practice has is 6 weeks on an NG tube. Having a NG tube can also reduce her appetite since there is a tube constantly running through her esophagus.

We were suppose to meet with the keto dietician but she did not show up even after several pages. We originally though there was a keto program in Iowa City but there is not and St. Paul is the closest and having the doctors and dietician essentially in the same hospital will make it easier to get answers.

Looks like we may have to wait until Monday to get any more answers.

Found a Carter's Store tonight, got Grace some warm clothes and a wind up musical giraffe. Plays the same song my old wind up Koala played.

Day 1 in St. Paul

We traveled up to Fairbault, MN on Wednesday night. We were constrained for time with Grace's medication/feeding schedule (mostly overnight feedings though her feeding tube) so we decided to spilt the trip up and make our Thursday morning drive short. We arrived at Children's Hospital in St. Paul and saw Dr. Frost, one of the Epileptologists from the Minnesota Epilepsy Group. There are some additional drug therapies that we can try, I can't remember the exact names right now and probably couldn't spell them if I tried.

Wednesday was the last day of Keppra; they checked her dosages of Keppra while she was on it and we may have been in the therapeutic range it is pushed significantly higher and does have some results, we may go back to Keppra in the future if other treatments don't work.

There is one drug that has not been approved by the FDA as of yet, possibly might be approved next year. It is the preferred treatment in Europe over ACTH which was the steroid we tried originally. The drug I believe is called Vigabitrin, and is not a steroid; currently it is available in Canada by prescription or over the counter in Mexico and very very pricey.

Another option that may be an option is the Ketogenic Diet. The diet is a very very very strict diet that consists of about 90% fat. It would be easier to try it now versus later as she gets older as we would be formula based to start plus since she hasn't started food she essentially would not know any different. This treatment has been around for at least 80 years, instead of providing glucose for energy the body gains it's energy by burning fat. The diet is similar to Atkins but much more strict, virtually no carbs and the slightest deviation from the diet could could completely negate everything in the past. Needless to say Chocolate Chip Cookies would not be in Grace's future.

If we decided to try the Ketogenic Diet, Grace would have to have a G-tube put in; she currently has a NG-tube through her nose this would be a tube surgically put into her stomach and I believe a port would be in her belly. We would have to commit to try this for 3 months and if it worked we would be on it for apx the next 2 to 5 years. The benefits of this are that the diet can actually change the way the brain functions and could make Grace seizure free in the future or at least reduced even when she goes off of it. She would also be able to continue on drug therapies and once we reach a point in which seizures are stopping we would then reduce levels of the medicines to determine in the drugs or the diet are working or if it's a combination of the two. This would be a "natural" treatment option which is intriguing. We would be in close consultation with a Ketogenic Dietician here at Children's and working with an Epileptologist. We are going to meet with the dietician again today and most likely a GI specialist; if we go forward we would have to be in the hospital for a minimum of 5 days after the tube in put in. We will post more when we know more.

Sitting Up

This is a special chair that is helping with Grace's Head Control and body strength. She could only do about 3 minutes at a time when she started now we are up to 10!

Back to St. Paul

We went to see our Neurologist a week and a half ago and he told us there was nothing more that he could do for Grace and that she need to see an Epileptologist. We went into the appointment and the last wanting him to contact Dr. Ritter at Children's Hospital in St. Paul who we saw back in June but that never materialized. So we called Ritter and they wanted to see us, first they need to be updated on what had been tried, they figured we would be able to get in around November as the hospital was in the middle of a major computer upgrade but last Friday at around 4pm they called and they want to see Grace Thursday morning to be admitted. So we are heading up, we don't know really what will transpire just that this is the next step.

We are down to .2ml of Hydro-cortisone the steroid we switched to after the ACTH really messed Grace up, we are giving this to her twice a day and will continue until next Friday when we will drop to .1ml twice a day for two weeks after that the current plan is she will be off of it and then 4 weeks later Grace's immune system should be back up! They we can rejoin the wonderful world of daycare!

We are taking Grace off of Keppra one of the anticonvulsant drugs she is on, there was no evidence that it was working for her we will give her the last dose on Thursday morning.

We will try and put updates out here while we are in St. Paul.

Sleeping with a Blue Monkey Thing

Running on Empty is not just a Jackson Browne song

To All:

Grace will be eight months old on Thursday. It's officially hard to imagine life without her. We can't remember what we used to do, although I'm sure Hoover remembers that he used to get more attention! I wanted to let you all know how Grace is doing and ask that you continue to keep our family in your prayers.

Kevin and I feel we have survived the crash course in epilepsy and are now beginning to figure out what it is we need to do next. Grace is currently on four anti-convulsant medications (as well as a cadre of other drugs) and we are considering taking her back to the epilepsy center in St. Paul we were sent to upon her initial diagnosis in June. We meet with her neurologist here on Thursday and hope that he will be agreeable to helping us with this step. We worry about burning our bridges with him, but he's seen two other infants with Grace's diagnosis, the group in St. Paul has seen far more. And if we actually do burn our bridges I guess he wasn't the neurologist for us in the first place.

Since her website was last updated Grace has gained several other doctors and a feeding tube. All of this results in an incredibly busy schedule and though I for one have never been amazing at being organized... I have had to kick it in to high gear. We also have a home health nurse, a physical therapist, two occupational therapists, and a teacher to schedule into our days. All of them are greatly impressed with Grace's progress as of late. We are still really behind, but we are able to see that she is learning and growing physically stronger everyday. Because of the medication her immune system is still comprimised and my father is now living with us three days a week to take care of Grace. Everyone at work tends to ask how my dad is hanging in there, before they ask about Grace. They think its amazing he is willing to help, and we think it is too, we couldn't do this without him.

Work has been busy, but my co-workers have been very supportive of my need to duck in and out of the office because of various doctor's appointments and understand that when the neurologist calls and asks to speak with me I need to leave what I am doing to go and talk with him. Because of Grace's immune system we mostly hang out at home, and in the back yard if its nice. Kevin and I got the opportunity to go to Target together last weekend (thank you Mom!) and that was just wonderful. We had so much fun!

Kevin's co-workers have been amazing as well. He isn't looking forward to the holiday season however because it will be such a busy time. There are of course many things to do, and when only one of us is here Grace takes front and center stage... the rest just has to wait.

I have done a lousy job of keeping you all informed of our lives, and hope to do a better job reaching out to you to share our story. I won't pretend it isn't hard, or we don't have bad days.... but we also have wonderful moments, a beautiful daughter, lots to look forward to, stories to read, and the sound of baby sleeping noises in our baby monitor at night - ultimately we have been blessed.

Love - Joy

Left Side, Right Side

Grace started using her right arm and reaching out towards a hanging object while in her swing today. She is batting at objects with both arms! She was just starting to do this before all of this started. Part of the loss of this skill was most likely do to a set back from the seizures and the other from the medication she is on. Now if she would only smile.

Decrease Medication

Today we drop Grace's ACTH down to .25ml the original dosage we started her at. We are also going to decrease the clonzapam, as her head and body control are getting significantly worse, the clonzapam is a muscle relaxer so we are hoping that this help.

Back to the Pediatrician

We went back to the pediatrician's office today, this time to meet with our regular pediatrician. We seemed to get things worked out and more of a straight answer as to what was going on with the diagnosis of Grace having thrush and then not having thrush. It was a relief to speak to Dr. Fornoff; we tried to assure him that we were not trying to be difficult it's just really tough when two doctors are angry at each other and we are getting thrown around between them. We just want the best care for her and we can't seem to do that when ego's get in the way. It's not like we enjoy spending half of our awake time in various doctor offices or hospitals.

OT Visit

Today we had Grace's Occupational Therapy. We are trying to develop the use of her right side, she greatly prefers her left side. We are working on things like rolling over and gripping objects. Grace was starting to grasp objects before all of this started but she has lost the ability. Right now at almost six months she she around the development of a two and a half month old. We have been working on things for the past few weeks. We started to see some significant changes in the last couple days she is starting to tract objects much better and grabbing a hold of light objects. She even rolled over today to her back, granted she was a little annoyed to be on her front so that probably helped.

We tried to feed Grace some rice cereal with a spoon, she did really well for our first attempt. We need to get her eating by a spoon because if the drug Keppra she is on does not work we will be switching to Topamax which comes in little sprinkles that we will need to feed her on top of applesauce or rice cereal.

Eating with a Spoon

Night Out

Nancy came to watch Grace tonight for a couple hours so Joy and I could get away. Nancy took care of grace at daycare before all of this started.

Worth Every Penny

Not to mention nickles, dimes, and quarters.

Doctors

Grace may or may not have thrush. The substitute pediatrician prescribed a medication on Monday to treat it, today we have a new prescription to prevent it and he doesn't know where the idea ever came from that she has thrush. We basically are not listening to him anymore and going to go by what our Neurologist says as he has more experience with ACTH and its side effects and is very concerned with any side effects.

Grandmas & Food

Grandma Deb arrived today. Haven't mentioned anything about the Grandmas...lately they have been taking turns taking care of Grace from Wednesday through Friday. This has been a huge help and it has saved us from taking time off of work to take care of Grace. Plus it is really good for the both of us be at work just to maintain our sanity.

People are bringing us meals now this another huge help. Our church is organizing meals three nights a week. We were eating lots of take out and junk food and it was getting the best of us.

The Tapering Plan

Went to see Dr. Kabbani today we will be decreasing Grace's ACTH, it will take 4 weeks to taper her off of it. If we go to fast her body could go into shock. After that it will take Grace 2 to 4 weeks for her immune system to come back. Kabbani is concerned with the thrush and how it is progressing and wants us to see out pediatrician once again and see if we can get some medication to treat the large amount of eczema on her forehead. Kabbani can not prescribe this as he is just our neurologist (I think it is a conspiracy) but her would call and professionally advise the substitute pediatrician that something else needs to be done and offer recommendations. We like our neurologist!

Grace's blood pressure was very high we are going to double her blood pressure medication.

We are also starting Grace on Keppra another seizure medication it will take three days and half dosages before we can giver her a full dosage.

Old Mc Grace had a Farm

Down with ACTH

I took Grace back to the pediatrician and saw the the same doctor we saw last week, our primary is on vacation for the week. He felt that we were making a mountain out a mole hill and that Grace's case of thrush was nothing to be concerned about and we should continue treating her with ACTH. We did start her on a medication to treat the thrush.

All of this was contrary to what Dr. Kabbani has been telling us and we trust our neurologist by far more that the substitute pediatrician. Joy called the pediatricians office to speak with the substitute pediatrician to ask additional questions and address her concerns of having thrush with a weakened immune system. Everything we have been reading indicates that this is really bad. He called us back and was rather short and argumentative. Perhaps it's time we think about switching pediatricians.

We contacted Dr. Kabbani's nurse and advised her that Grace's seizures have not decreased in the past week, that she has thrush, and the issues we are having with the pediatrician's office. We wanted to know if we could decrease Grace's ACTH the next day. Granted we had an appointment the next day but we wanted to start tapering now versus later if at all possible, even if it is only one day. We are ready to have a normal baby back. Dr. Kabbani's nurse called us back and we are to back off 25% of the ACTH and we will put together a full plan the next day.

lalalalalala

One More Week

We met with Dr. Kabbani today, Grace's seizures decreased to two each day for the past week except for one day she had three. We don't know whether it was the ACTH or the klonapin that caused the reduction in seizures or a combination of the two. We thought this was really good news but apparently this is the max dosage we can really give Grace and since there was a decrease in seizures it would make sense to continue for one more week to see what the results are. Grace should be seeing zero seizures a week with ACTH, maybe one.

Kabbani thinks Grace may have a little Thrush starting, she already has some diaper rash and a yeast infection. If she has thrush we will need to start reducing the ACTH as her body simply can not fight off an infection at this time. We went to see our pediatrician but he was out for the day so we saw another doctor in the group he did say she a mild case of thrush but said it was nothing to be concerned about and that continuing on the ACTH treatment was the best course of action, he should know after all he has had another patient on ACTH in the past.

Fireworks

Grace didn't like the fireworks on the 4th, they woke her up and she was mad.