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.