Friday, November 16, 2007
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.
Wednesday, October 31, 2007
Tuesday, October 23, 2007
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.....
Thursday, October 18, 2007
Thursday, October 11, 2007
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!
Wednesday, September 26, 2007
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
Monday, September 17, 2007
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.
Saturday, September 01, 2007
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!
Friday, August 31, 2007
Thursday, August 30, 2007
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.
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.
Tuesday, August 28, 2007
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.
Sunday, August 26, 2007
Saturday, August 25, 2007
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!
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!
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.
Friday, August 24, 2007
Will let you know more when I know more.
Thursday, August 23, 2007
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.
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.
Wednesday, August 22, 2007
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.
Tuesday, August 21, 2007
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!
Sunday, August 19, 2007
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.
Tuesday, August 14, 2007
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.
Friday, July 20, 2007
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.
Friday, June 22, 2007
Thursday, June 21, 2007
She hasn't had any morphine for pain today, just Tylenol. She must be tired as she has conked out already.
Wednesday, June 20, 2007
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.
Sunday, June 17, 2007
Saturday, June 16, 2007
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.
Wednesday, June 13, 2007
Tuesday, June 12, 2007
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.
Friday, May 04, 2007
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.
Tuesday, March 27, 2007
Monday, March 26, 2007
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.
Wednesday, March 21, 2007
Wednesday, March 07, 2007
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.
Tuesday, March 06, 2007
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
Sunday, February 18, 2007
Wednesday, January 31, 2007
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.
Monday, January 15, 2007
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.
Tuesday, January 09, 2007
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.
Monday, January 08, 2007
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.