Still got the cough

Finally got her flu shot but seriously Jordan has been sick since mid October off n on. Feels more on then off. Hoping to keep her warm and dry this wet weekend. Going to be a long weekend. Praise the Lord Nick is working & working this weekend too, thank you Jesus for overtime.

Today is the last day of school then a two week break. The plan is to potty train during those two weeks. So far she has asked to go potty all on her own. I'm guessing she is ready. Monday is the last of PT & OT for two weeks also. So no better time to do this.

Off to last day of school we go!

Thanks for the prayers & continued support!
Kelly

Updated video of Jordan at PT yesterday

Making a cake for Tetah & Papa

Yesterday Jordan said she wanted to bake a cake for her Tetah & Papa. Here is the conversation:

Jordan: I want to make a cake for Tetah & Papa. I need eggs.
Mommy: What else do you need?
Jordan: Ketchup
Mommy: oh ok, what else?
Jordan: Sprinkle gold fishies on top.
Mommy: oh really, sounds yummy what else?
Jordan: Jellybeans.
Mommy: yummy anything else?
Jordan: Nope, lets bake it mommy.

Boy anyone else want to try this one out :D

Hoping the end of the cold is coming.....

Well a few weeks ago Jordan was sick. Coughing & runny nose the basic cold stuff. A bunch of rest and she seemed better for a week. But she missed a friends birthday party, which she thinks parties & birthdays are the best. To the following week spiking fevers off and on averaging 101 but up to 103.5. After 3 days we headed to the Dr's office. Oh and she missed this time 2 parties for 3 friends. Now she thinks that they can reschedule parties or something not really sure. Dr put us on Cifdiner (antibiotic) to clear this all up and given the fluid in her ear. Day 6 a super bad diaper rash started which now on day 9 (3 with the rash) she has school. This seems familiar to about this same time last year. Hoping she stays happy and healthy for the rest of the holiday season. Most of her school mates were out sick. Friday they combined all three classes and let them play on the park because well fresh air & so few made it to school that day.

My list to clear the diaper rash:
naked time
triple paste
baking soda bath
pro-biotics
no fruits or veggies little protein
BRAT diet (Bananas, rice, apple sauce and toast)

Most of all of this reminds her of having to take the seizure meds so it is all a bit of a fight. But I'd prefer this fight then the fight during seizures for meds.

Nov. 12th Nick & I celebrated 5 years of marriage and 4 months Jordan seizure free. Been thinking a lot about a seizure dog. I read that some dogs will bark to notify of an on coming seizure. Jordan's love for animals just grows. Still doesn't want to play with dolls just animals.

With thanksgiving around the corner & Christmas fast approaching this is going to be a great holiday season to celebrate seizure free and enjoy so much the holidays have to offer. Jordan has already started asking for Christmas stories and songs. I'm more then happy to do so for her as Christmas is my favor holiday. We might even get the tree up for Thanksgiving.

As a side note, Nick is back to work again! Three weeks back on unemployment and now back to work.

Again thank you all for your support, encouragement and most of all prayers!
Blessing~ Kelly

It's been a while

So, I know it has been a while since our last blog update. Jordan is still seizure free and medication free. She is still continuing with Pt & Ot and hour twice a week and horse therapy 30 mins once a week. We have started meeting with a behavior therapist to help us with potty training. Jordan just had a check up with her Pediatrician and she is at 50% of weight & 75% in height. She is 39.5 inches tall. Won't be long before she is taller then mommy. She doesn't always seem to like school as much as she did the first week. She is in a smaller class room with younger kids & a smaller play ground. We actually have a meeting with the teachers this wednesday to talk about moving her into the 3yr old class with 3 and 4 yr olds. She is currently in a class with younger then 18month olds & two other 3yr olds but she is still the oldest by at least 4 months or more. She really is learning from watching others. Last weekend she watch a little girl (Jaiden) ride a big wheel/ tricycle and with in a few days Jordan was off and riding her own bike. Jordan is now running but not yet jumping (she's tried a few times and gotten off the ground a bit but not all the time). I am hoping to get a copy of her CCS report soon and I will post the growth in milestones. But for now she will continue to get PT & OT via CCS for the next 6 months when she will be re-evaluated again. Jordan also is taking swimming lessons twice a week for 30 mins at the YMCA. Well it is Monday & no school for Jordan today I think we are going to head up to Avila Farms to the pumpkin patch for the morning.
I will try to load some pictures or videos soon.

Again thank you all for your support encouragement & even advise (which I could use all and any advise with the school situation & IEP stuff). Most of all thanks for the prayers!

Blessings~ The Harvey's (Kelly)

1st Day back to School

Today is Jordan's first day back to school. She was SO excited. She is holding her penguins and just finished telling them to get there backpacks ready because "were going to school" We had to leave them both in the car, but they will be waiting to see her when we pick her up. Heading into the building Jordan turned to other kids walking in and said "come on friends lets go were going to school!" then she ran off and in. I had to go track her down to say goodbye and give her a kiss. She loves her school just hope she enjoys it ALL day (or at least the 3hrs she is there). She gets to go ride Baard the horse today also. It is going to be a full and fun day for her.

She is still seizure free and med free and doing great. We are working hard to get her to learn to jump and pedal a tricycle. Next we will work on potty training. But in most other areas she is 100% (or so I think). Most people now who don't know her previous problems would have no idea she had any delay.

Nick is working still about 30 mins north 4 days a week 10hr days. He just started night school in addition. So, he really enjoys his days off and play time with Jordan.

She still loves her Chuggington & Penguins. She is enjoy creative play more and more. I can't wait to see all she learns at school. Such an exciting time for her & us all.

Blessings friends & family for all your continued support, prayers & encouragement!
Kelly (Nick & Jordan too!)

Over due update

First to start off. Jordan was taken off all medication Saturday July 10th. She is still seizure free and off medication.

We were down at UCLA for 5 days. Jordan was attached/tethered to an EEG machine and video camera for the whole time for 5 days. It was not easy & we had to get very creative to keep her busy but it was a success. We were admitted on July 8th (Thursday) she was on her full normal meds. The instructions were to push a button and log down anything we thought was seizure activity. The Dr.s came in the next morning & said all that we marked was in fact NOT seizures. They have three checks (spot check, my push button spots are checked & the system notes any seizures) There were no seizures thus far. Friday night all but one pill of Jordan's meds were removed & same deal push the button & mark the log. Saturday morning we again were told no seizures. Saturday was the 1st full day Jordan hasn't taken any meds since March 18th 2009. Again push the button & mark the log. Again Sunday morning told still no seizures. At this point they said we needed 48hrs clear of no seizures to send us home off meds. Monday morning again told no seizures and discharged with only a Rx for emeregancies (grand mal seizure only)

We took pictures and video all of which I hope to get loaded on here soon.

The nurse staff was great. Of all Jordan's toys & such her biggest hit was her Chuggington DVD & Train they sent. No matter how upset she was or frustrated being attached to EVERYTHING her train and DVD always cheered her up. All the toys, DVD's, stuffed animals were AWESOME they helped keep her entertained and happy. Jordan even had a visitor from a VERY large white doggie. He at one point even climbed into her bed and tried to lay down with her. By the 3rd day we started to get creative. Attached to Jordan's head were a ton of EEG leads and the cords were attached to a 2lbs box and the box was attached to a computer & video camera. We put Jordan's backpack on her & put the box in it so it could be easier for her to carry & we chased her around the room with the other cords. We still couldn't move far due to the fact we needed to keep her on camera as much as possible.

It was such a blessing to have Jordan's Tetah & Papa (Kelly's parents) with us to help. Twice Kelly was able to go back to the Tiverton House for a shower and a 3hr nap.

Well back home now. Jordan is so much more alert, active and happy. She is doing GREAT. She is starting to sleep at night better but seems to want to give up her naps. Mommy isn't ready for that & is still trying to catchup on so much lost sleep. Mommy dreams of either a Hawaii vacation or a spa getaway. Both will have to wait but mommy will keep dreaming.

Thanks for all the support, prayer & encouragement we couldn't do this with out prayer!

Blessings & thank you!
The Harvey Family

Tsukihoshi shoes are amazing

Jordan has been wearing a pair of Tsukihoshi shoes for the last 5 months or so. They are a great shoe. They have great arch & ankle support. Jordan always seems to walk better in these shoes. As she has out grown her shoes I decided to write the company inquiring about discounted cosmetically damaged shoes. We got a few emails back from different people in the company who had received my email & read our blog. Two days later the following arrived.

We can't express how awesome this is for Jordan. They fit her perfectly & she is already doing SO much better being back in her Tsukihoshi shoes. Yesterday she walked a rope balance beam at the park for the first time. We are excited to watch her gross motor skills grow as she has the physical confidence & stability thanks to her new shoes!

Tsukihoshi shoes, Gabriel, Takako & Brandon of Badorf Shoe Co.

Thanks Sprout!

We were blessed to receive a package in the mail last week from Sprout. A special thanks to Rebecca a publicist at Sprout for sending us a care package for Jordan's UCLA stay. All of this will really help to past the time & keep Jordy busy.

Emotionally and Physically Preparing for UCLA

Well looks like everything is set for UCLA. We will be admitted there on July 8th for a Video EEG study for min. 24hrs up to 4 days. Nick & my folks are going to be staying at the Triverton House kind of like a Ronald McDonald house I think. We are still waiting for all the paper work from the hospital to arrive, need to get a hold of the social worker @ UCLA to make sure all pre approval is done and ready. I'm getting a bit more nervous as I've done research about what a Video EEG will be like, look like & what to expect. Originally I had understood that Jordan can move around the room freely, however come to find out she will need to stay with in view of stationary camera. I have a feeling that means near or on the bed for up to 4 days. We have gathered books, coloring books, paints, stickers, DVD's and CD's. We are blessed to have received a care package from Sprout TV with 2 DVD's, a Wiggles CD, coloring book, stickers & crayon. SUPER blessed. We also received an email from Big Idea's AKA Veggie Tales and they are sending Jordan 3 DVD's, a plush Bob & Larry, and a Veggie Tale coloring book. We got an email from Chuggington saying they too are sending a care package. Jordan would love to have a few Trainies with her, but if not at the hospital then we might buy her a few when we get home. Next I have to work on gathering supplies for crafts while we are there. I'm not the most crafty person but Jordan loves ALL kinds of art work stuff so I'm going to try. ANY ideas or suggestions are greatly appreciated, many people have already sent me a few ideas & thank you for those.

Recently I read an article going over how to prepare Jordan for this. With her having so much Dr & hospital contact so far I think the day before might be best. But I'm concerned how she will react to ALL of this.

A few things we have noticed and hope for explanations to

1) She is licking, bitting, and chewing EVERYTHING.
2) What kind of Seizures are these if Dr. Lerner things she was misdiagnosed.
3) She often has hiccups is that anything to be of concern as " Hiccups are also a kind of myoclonic jerk specifically affecting the diaphragm." from Wikipedia
4) She has trouble sleeping & wakes up often during the night. Fights going to sleep by screaming, crying & saying she is scared. Which makes me think of SUDEP .
5) She will often go from being fine and playing to in a corner crying saying she is scared. From there it can often take up to an 1hr to calm her down. Once the "episode" is over she is fine like nothing ever happened.
6) She zones out sometimes during an "episode" or upon waking & often while watching TV. Other times she is talking and interactive with whatever show she is watching.

As the journey continues with prayers for more answers, improved health, reduced seizures, reduced medication and less questions.

Blessing & we can't thank you all enough for ALL your prayers & support.

Kelly

Dr. Appointment today for Jordan

Please pray for us today! Jordy has preschool 8 to 10, then a Dr appointment (she has been chewing, licking and biting stuff plus having really bad screaming episodes more then just tantrums. They come and go quickly and at times she just stares off), then back up for PT. We are going to see her Ped but also called into UCLA. Her video EEG isn't until July 8th.

May & June Photos (1st day of School and more)

I had to wake her up on her 1st day of school.....my sleepy head, just like her mommy

Rise and shine! It's your first day of school

Just waking up for 1st day of school


Jordan's first day of school



Kai the birthday girl

Jordan enjoying the Land Shark for Kai's 3rd Birthday party










She just LOVES the beach.

She is ready to go on an adventure exploring the great outdoors.


Jordan practicing for her 1st day of school....NOT her 1st day just pretending :D



Jordan and I walked with Stephanie & Lily for the Arthritis Walk.
Jordan's eye rash from allergies

Home sick

Well Thursday night Jordan started running a fever of 101. With so many meds recalled there wasn't much we could give her. By early Friday morning still running fever of 101. She had no other symptoms going on. Nick went to CVS first thing in the morning to see what he could find to reduce her fever. We called her in sick to school on Friday. She started with a cold by Saturday, runny nose, itchy eyes, cough and fever off n on.

This morning Jordan is feeling better but not yet ready to go back to school. We've called in sick yet again to school. Praying she is ready tomorrow. Hope this is building that immune system so we don't have this too often. She doesn't seem to have a runny nose, eyes look better, and she doesn't sound too congested. Thanks for the prayers. During nap time today I hope to update the blog regarding her UCLA appointment & pictures from May & June.

Blessings!

Long time no update!

As I type this Jordan is watching her favorite show, Chuggington. She started preschool this week and is loving it but is home sick today. She was tired all day yesterday & running a fever of 101 last night & yet again this morning. With all the medication recalls there isn't much for me to give her :(

Tomorrow Jordan is schedule to ride Rio (her horse) @ The Rider's Roundup for her horse Therapy. Praying she is feeling better n able to ride. They are taking a break for the next two weeks so if she doesn't ride tomorrow it will be three weeks of no Rio.

We got the date for her EEG, video study @ UCLA. We check in on the 8th of July for up to 4 days. Tethered to an EEG machine. Stuck in a room. Collecting books, toys & art projects to keep her busy & me sane. We got approved for the Tiverton House for Nick to stay at while we are there. Only one of us can (has) to stay with her the whole time.

We had an eval this morning for behavior therapy..help... not really sure what to call it. But they can help us with potty training, temper issues and more. We have an eventful summer ahead and will try to update as often as possible

Jordan turns 3

Tomorrow is Jordan's birthday. She is turning three. We are excited to be going to the zoo. It's going to be train rides, animals and Yo Gabba Gabba (which I'm not a fan of but well she likes it so ok)
1 month before Jordan was born.Seconds after Jordan was delivered by C-section.Just a day or so old if that.
Just at about her 1st birthday.A little past her 2nd birthday.Just last month!

Happy Birthday to my precious little girl! We love you & Praise Jesus for you and your health!

IEP Update

Thanks for the prayers & encouragement. Here is a bit of the update. They really went over a LOT of stuff. First Jordan does qualify. She will start preschool June 14th for Summer school & then late August for Fall. She will go 4 days a week for 3 hrs. They set different goals for her in different areas. There was 12 people not counting my ... See Morefolks & myself. The initial report is 8 pages long. Plus add to that the goals. The program they are offering her is an inclusion program with Special Day Program (Special Ed) Aids & Teachers. We are excited but it really is overwhelming. More then I thought it would be.

IEP~ Today @ 315

Today is Jordan's IEP @ 315. There will be the case manager, school director, counselor, nurse, speach therapist, CCS PT & OT Heather & Fran, Sojourn PT & OT Maria & Dawn, Tri County case worker Natalie, myself, my parents and I think that is it. The adaptive PE person can't make it & our new case worker from Tri cou...nty can't either. We find out what services she qualifies for in regards to preschool.~ Sorry for the short & quickness but wanted to get this up here before I had to run out the door to the appt. Will post an update later tonight!

Another busy week and a lot of answers to prayers!

Ok to start for those who don't know Nick (Jordy's daddy) has been unemployed for almost 11 months. Yesterday he started a new career. He got picked up for a job with the PIPE fitters union (Plumbers & such). He had tested in July for this & his time finally came. With this he will have schooling in the evening starting in August and lasting for the next 5 years. I will be on my own for all Jordy's Dr. appointments & PT and such. We both hit the road running yesterday. Nick is working 4/10's and his first day worked 2.5hrs overtime beyond the ten. I made sure to have a cold beer and chocolate cherry cake ready & waiting for him when he got home last night. I must say after 1 week shy of 11 months this is an answer to prayer. But more then just an answer to our prayers, this is the Lord JESUS Christ answering the prayers of the community that has surrounded us, encouraged us, blessed us (in so many many ways), and joined us in faith in prayer. So, thank you know that HE answered your prayers.

Moving on with our Great news. Last week on Thursday Jordan had another EEG. The results came back with little to no seizure activity. This means the medication is working. PRAISE JESUS! We still go down to UCLA on May 20th. My girlfriend Suzy (you rock) is going to go with me as Nick will be working & my folks are unavailable (not for a lack of trying to find ANY way they can to make it~which knowing them they might just pull the rabbit out of the hat)

So again moving back in time. Last week on Tuesday Jordan got her new car seat. The Britax Frontier 85. The Santa Barbara City Fire Departments Union purchased the car seat for Jordan and two fire fighters who are trained car seat installation technicians not only installed the car seat but also gave us a bunch of safety info. Stuff I would have NEVER thought of. I must say we have changed our ways with our car. Jordan now rides in the middle back seat. We try to limit the loss items in the car, and the side window shades that were the hard roller kind have been removed. Middle spot is the best & safest place for Jordan. Loss items in the car can due A TON of damage in an accident (match box cars in an accident going 30mph fly at 120mph and will break the front windshield they fly so fast. Side shades on hard rollers can impale a person, or hit them in the head VERY VERY hard! I think EVERYONE should have their car seats installed & or checked by a trained technician. It is kind of like a seal of safety for your little ones. You have nothing to loss only peace of mind of protection for your babies!

Now moving forward to this week & the busy schedule. As we move forward with Jordan's IEP, IFSP what ever this is called....I'm starting to get a bit confused. We have had a TON more appointments, evals and such. Yesterday we started with the School Counselor doing his 3rd eval to see how she does cognitively, then over to Zaca Preschool (where we are hoping to get into) for the speech and language therapist from the school did Jordan's 2nd evaluation, then off to PT with Heather & Fran from CCS, and while there the school nurse met with me to go over Jordan's health and such, then after Jordan's PT the school nurse did her basic hearing & vision test. She wants Jordan to have a Pedi's hearing & vision screening done too. I think she said to have it done at UCLA but again so much information...some of it is getting lost. Today Jordan has what I think might be her last PT with Sojourners/Tri County Regionals and if it doesn't rain she will get back on the horse today for her hippo-therapy (aka horse therapy....hippo Greek or something for horse what do I know). Tomorrow is our Santa Barbara day, Costco run, laundry and what ever else I can fit in. Thursday more PT. Friday yet again another evaluation for Jordan with the school counselor. Next week on May 6th is the final meeting where they will tell us what Jordan's IEP is and what services they will be offering her & where she can/should go to preschool and how long & often. The list of phone calls I need to make regarding this that or the other thing is long too :D Well off to work I go :D I guess when Nick got a full time job so did I and I will say PRAISE JESUS for that.

Thanks for all your prayers, and support. We are excited to be on this journey with you all. Your words of encouragement, advise and information is so appreciated! Be blessed this week & know HE hears the cries of our hearts~ Kelly

Just Photos~ I couldn't seem to get a post w/ photos to work