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