Quick Update

Jordan is doing SO much better. She is eating great, plus foods she wouldn't eat just a few months ago. She is drinking great, and not just milk which is taking so effort from us but it's working. She is walking better, falling less, and more responsive. She is talking more, interacting with us & her cartoons. She just seems more aware of her surroundings. She is currently on 1 Depakote in the morning & 2 Depakote in the evening, we are decreasing it one pill a week. She is still taking the Keppra and two other meds for the seizures but we feel the decreased Depakote is really doing wonders for her with the addition of the Keppra. We are still working on getting her an appointment down @ UCLA. But we do have an appointment in the mean time for another EEG. This one will be a sleep deprived EEG @ Cottage Hospital. Which means we keep her up super late the night before, wake her up super early and pray she falls asleep during the 30min EEG. It is scheduled for April 22nd @ 845am. Tomorrow Jordan will have a follow up with her Ped Dr. Brennan from the hospital stay this past weekend. We are also starting to do more and more research regarding Car Seats. Jordan is 3 inches from maxing out on her height limit for her current seat. I have contacted a few different organizations but they don't seem to have seats over 40-45 pounds 5 point harness car seats. It is amazing the information that is out there regarding weight, height limits and safety for car seats forward facing, rear facing & booster seats and yet most seats that are reasonable cost are the basic limits only. Well to do more research and calls...lets see what I can find. We are also checking into SSI for Jordan. It was suggested to us from CCS that she might qualify right now. Looks like I found my full time job. Thanks to my mom & all other moms out there for your hard work & devotion. If you are a working mom, mom with special needs, a working mom with special needs or a stay at home mom raising your kids.... this sure is hard work! It truly does take a village.

Thanks for all the prayers, encouragement, blessings, and advise.

~ Kelly

At home yet again & feeling SO much better.

Yesterday Jordan still wasn't eating or drinking anything. We called her Peds office and they set up an appointment for us to come in at 230pm yesterday. The Peds Dr gave us our options and I asked if she has kids (4 she said), what would you do was my next question (admit to the hospital for IV). She called to see if they had open rooms in Peds @ Santa Barbara Cottage Hospital, they did. We headed right over and were taken right up to Peds 5 east room 66 (great view of the mountains). Peds critical care Dr Lehman went over with us her situation and ordered the IV started. Got the IV going, she perked up, she ate some dinner, took her meds (still a bit of a fuss but not too bad), and slept. She tossed and turned in her bed with me also in the bed...as we tried to keep the IV out of the way. Only one parent is allowed to stay the night, so daddy went back to my folks house to sleep. Jordy slept as good as one could hope with all that was going on. Mommy on the other hand is hoping to catchup on sleep over the next few days. Jordy woke up happy & hungry this morning. She saw the breakfast tray & said "I want a snack".... pancake it was and she ate it & loved it. We were discharged at noonish today. She took a morning nap at the hospital, an afternoon nap at my folks, and is down for another nap now. Her walking looks so much better minus the weakness due to this past week. We can't wait till she is back to 100% and see what we really have going on with her walking. She loved being outside in this nice warm Saturday weather we are blessed with. She ate a bit of a lunch at my folks house, wanted liquids and is happy. We were advised to start watching her milk intake (yeah yeah I know steph you told me that a while ago....i think the Dr did to but I probably just ignored it), we will be trying more vitamin water & G2 verse juice too much. Well Jordy sleeping mommy is going to try to nap too.

We can't thank you enough for all the prayers, God is good! He hears our crys!

Blessings ~Kelly

PS We have pictures & I think so new videos to add soon

Jordan is still sick

Jordan is still sick. We are heading back down to the Drs office @ 230 today. We were unable to get her to take her Depakote this morning. She won't eat & is drinking very little. Her walking seems better when she gives it a try. She doesn't seem dehydrated but well at the rate she is going that is bound to happen.

Today is Purple Day, Epilepsy Awareness. Thanks for sporting Purple today in support!

I will keep you all posted~ Kelly

Back in Buellton, Got our bags & praying for Jordan to be healed

We are now back up in Buellton. We got our bags @ 9pm last night. Glad we had already planned on staying at my folks house. My mother's back is still hurting but she is doing better. I think it was stress. Jordan had an appointment today with her Pedi Dr. Brennan. He said she could have the diarrhea for 10 days. Today is day 4. He said if by early next week she is still not doing better to come back in. We are trying rice milk, soy milk, pro-biotic yogurt, and pro-biotic's. Honestly we are trying ANYTHING. Her eyes are all puffy today from crying. But if we have tears she isn't dehydrated. Thank you so much to Erika for feeding Cody & picking up our mail while we were gone. Also thank you Steph for all the info, advice (Triple Paste really is awesome) and well more info it has really been helpful. I placed my first call to UCLA to schedule Jordan's appointment. Dr. Brennan suggested I keep calling often until they don't want me to call anymore and have an opening. Next week Jordan is scheduled to see Dr. Carter (Pedi Neuro), looks like we will keep that appointment until she is set up with UCLA. Also doing more research into how to get Jordan a new car seat. Alpha Santa Barbara has been really helpful in helping us find a way to get her a Britax Frontier 85. So far they aren't able to get it for her but they are working with us to find a way. It covers more height & weight then the average car seat.

Well Jordan is eating a bit more, and not throwing up. She is drinking a bit more too. But when I say a bit...we are counting in tsp. She is sleeping a ton (wish mommy was too). We aren't sure how her walking is...she is too weak to walk since Sunday. She doesn't want to take more then 2 or 3 steps before she just sits or asks to be picked up.

Again as always ~ Thank you for your prayers, support, advise & information. We appreciate all of it, but most of all the prayers!
Blessings ~ Kelly

We have PEE lots of PEE

Never before have I been so happy to have Jordy pee so much that my lap gets warm & pee is coming out the top of her diaper & onto my lap. Her fever is down 98.6. She is talking & animated like her normal self. She is eating a bit more & drinking a bit more. Still going to do BRAT's food and Pedialite & Gadoraid. PRAISE JESUS! Thank you all so much for your prayers. The Lord heard them & answered them. This is the whole reason we started this blog. To have a great covering of prayer for our little girl. Through this all we saw no large seizure activity. There were a few jerks during her sleep which could be seizures or just her sleeping, we will never really know. Again thank you for your prayers, we head back home tomorrow afternoon. Still sad we missed the WHOLE wedding, but as everyone keeps saying not for a lack of trying.

We fly home tomorrow. Wednesday Jordy will have a check up with Dr. Brennan (Primary Pedi Dr.). We will reschedule her H1N1 boaster for a few weeks from now. Look into a new local Pedi Neuro (as we have found out that ours isn't accepting our insurance anymore....she hasn't told us that but we are putting the puzzle pieces together). Schedule her UCLA appointment and move forward with all of this. Praying we didn't share Jordy's flu bug or what ever it was with any of the family here or me n Nick.

Blessings ~ Know that our Lord heard your prayers, He listens to our cries~ it is so true!

Kelly

Update~ Jordy has a fever

Update~ We went to the ER yesterday. They gave her an IV of fluids, and an anti nausea med. We got all her seizure meds down yesterday, Praise the Lord. Got her home, she slept a ton yesterday & slept last night. She woke up 3am and every hour after wanting to drink. I gave her a few ounces and she kept that down. No wet diapers yet other then diarrhea. She however woke up with a fever over 101. Nick is off to the store for supplies for today. We changed our flights from this morning to tomorrow. Praying she is better by then. United wasn't helpful with the matter. Even with a medical/ Dr note saying not to fly it is still going to cost us $450 to change the flights that is with the credit if they give it to us. I think that is completely wrong.

Please pray she gets better, fever reduces, food & especially meds stay down, no more diarrhea, United gets a heart, and Jordy doesn't pass what ever this is onto anyone else.

Now to change all her appointments this week. No PT tomorrow, No H1N1 boaster Wednesday, schedule for Dr Brennan to check her out when we return, and call UCLA to get an appointment with them too.

Thank you all my prayer Warriors. ~ Blessings Kelly

Prayer request~ Jordan has been throwing up all day

Hello~ We are in need of prayer urgently. Jordan is unable to keep anything down. Jessica's wedding is today actually right now & we have missed it. Jordan has been throwing up all day. We are scheduled to fly back home tomorrow. She is back down yet again for another nap. It started off with diarrhea this morning then the throwing up. We feel so bad for Jordy that she isn't feeling good, she was looking forward to going to the party in her new party dress & now that we have missed everything about the wedding.

Please pray:
She stops throwing up & keeps food & liquids down
Wisdom on what to try to feed her
That she is better in time for meds tonight
That she keeps the meds down
That it passes quickly and she is better 100% tomorrow
That the flight & all involved with that go smoothly


Thanks~ Kelly

Jordan Update!

We are in Washington state for Nick's sister's wedding tomorrow. Jordan has been doing great. Last night she slept the best she has in weeks. She still isn't eating great but we keep praying that will get better. She has been much better about drinking something other then milk. She seems thirsty often. We got a call yesterday re: UCLA. We are approved and now waiting for an appointment. I am going to call Monday morning. The Dr. (Ped Neuro) still never called me last week. They only faxed the blood work after a second call to them requesting it. I also have requested all her records be faxed to her Primary Ped & a copy ready for me to pick up next week. Lets see how much that one costs me. The change in Jordy's meds haven't improved her walking really yet, but that could still be her balance issues as she adjusts to Keppra.

Jordan has been enjoying seeing family & being spoiled. She got to see Kelly's Harvey side of the family yesterday too for lunch (Thanks Auntie Cathy, Cousin Chrys, Luke, and Barbara Ann) We miss you and love you. Jordan is right now playing with Auntie Jess (our beautiful bride tomorrow). We celebrated Jessica's birthday last night with Auntie Deb, Uncle Dave & Gpop & Gigi. She can't get enough of her Oma & papa.... I think she knows they will give her stuff mommy won't. Kids are too smart for me.

Her walking like I said is still really bad. It is improving but not 100% yet. She keeps trying thats for sure. She did great for her flights she slept prior to take off in San Fran & woke up just as we started to descend into Seattle.

I hope to have more pictures and video soon.

Thanks for all the prayers. I'm sure I had some strong prayer warriors praying last night for sleep because we got it & mommy needed that.

Blessings ~ Kelly

No sleep last night & today is CCS Eval

Well last night Jordan didn't sleep well. She was fussy from when she went to bed @ 730 till midnight and awake from midnight on till 4am, when she & I both finally fell asleep. She has been fussy due to lack of sleep this morning since she woke up @ 715 and just now @ 9am went back to bed and fell back to sleep. Lord help me what does this day have for us. To say the lest mommy is tired and a bit cranky. A lot of coffee might help but I don't even think that is going to take care of it.

Today @ 11am in Lompoc we have Jordan's CCS (California Children's Services) Eval, regarding her progress, needs, and long term plan for her & their services. If I understand correctly there will be her Therapists (PT &OT), 2 Doctors, a nurse, a social worker (I would guess in case the news isn't so good & if the child's health is affecting the family), and our case manager. With CCS they can do PT/OT till age of 3 with out a diagnoses, but after 3 they will need to label Jordan to continue with services. If I understand correctly Ataxia is a treatable diagnoses to continue with other wise the word CP will be out there today. My (Kelly) folks are coming up and going with us. It will help for all of us to hear this & know what the game plan is for Jordan. I should have questions to ask but my brain isn't running at peek process.....but I have a few hours to think some up. If anyone has any idea of questions and can post them for me before we leave @1030 I accept all help on this one.

Prayer request:
The Lord to heal Jordan of ALL of this.
Jordan sleeps better at night.
Jordan to take to the Keppra without side affects.
Jordan to be seizure free on the meds.
Mommy to have the energy for today & patience
CCS Eval to go well & continue with Jordan's PT & OT
Answers to questions that make sense.
Dr. Carter (Jordan's Ped Neuro) to send us a copy of the blood work & to call to go over it (she was suppose to call Monday & never did & fax to a friends house for me & never did.
Daddy to have patience with a tired & cranky mommy :D

Thank you for your prayers~ I know God hears them.
~ Kelly

Blood Tests came back NORMAL! Praise The LORD!

Just got a call from the Dr.'s office. Jordan's blood work came back all normal. PRAISE THE LORD for He answered our prayers. The Dr. is still support to call me tonight to go over the blood work but they said it is all normal. We are so excited.

Jordan's walking is better, she still appears dizzy but she is managing better. Her mood has been good, she has been a bit frustrated but that is normal with all things considering.

We are still waiting for an appointment date down to UCLA. But that looks like it is all going through and going to happen in time.

PRAISE GOD FOR HE IS GOOD!

Thank you all for your prayers & we will continue to pray for HIS healing hand with the Epilepsy.

~ Kelly

Do I call the Dr in the morning?

I am asking myself "Do I call the Dr. in the morning?" Jordan just seems loopy drunk. It seems to be less and less. Her walking is still hard with many more falls today. Is this normal? How long will this last? She hasn't been hungry much still. But really enjoyed hot salsa n chips... and I mean hot salsa. I hope to start to relax a bit about all of this & let her walk around more. We are heading to Washington this week, for Jessica's wedding (Nick's sister), for a few days. Not sure I will have Jordan's blood work back yet. They are testing her AFP & IGA, not yet genetic testing. But Jordan does have her PT tomorrow @ 245 with Heather & Fran. They help her progress so much, so I'm looking forward to it.

Well Jordan is in bed & now I'm off to bed. If I don't start taking care of myself I will be worthless to take care of Jordan. Just feels like we made no headway in Jordan's health this past year.

Thank you everyone for your prayers. It really reminds me that we are not alone. What is the saying... it takes a village.

Blessings~ Kelly

Wabbly Walker but better then it had been

Jordan fell asleep quick and easy last night. The addition med (Keppra) plus everything else must just be making her super tired and very loopy. She did wake up a few times (3) screaming again. She seems to be having nightmares or something. She often says she is scared and cries for mommy & daddy. Breaks my heart every time. She woke up happy this morning, after a 12 hr night of sleep (for her not mommy). Her walking isn't really better but it is different, which I hope is hopeful. Now she just looks drunk sometimes when she is walking. We met up with friends (Stephanie & her daughter Lily) at the Zoo today. It was the Princess and the Frog day. Jordan really enjoyed it. I (mommy) couldn't relax. We tried the stroller, rented a wagon, and even had a backpack leach to keep her from hurting herself. She only had one fall, which was more a collide/hug with Lily. Jordan took them both down. Lily took it like a true friend, gave a hug and a kiss to help Jordy feel better. Jordy took a great long nap on the ride home & into her bed. We couldn't get her to eat lunch & didn't fair much better at dinner. She took her meds great tonight. We praise the Lord each time we do meds that she doesn't make herself throw them up. It has been a few weeks since she has done that. She did have another fall here at home this evening, nothing too bad but she was crying. Not sure if she was just still tired. After her meds I over heard her pretend feeding her Penguin (she doesn't do dolls she does anything Penguin) she told penguin he was sick and had to take his medicine. It broke my heart. She understands so much more then I had thought. Well it is nearing that time for her to get ready for bed. Thanks again everyone for praying, supporting, encouraging us, and sharing in Jordan's Journey.

Blessings~
Kelly

Thanks for all the support

Thank you everyone for your prayers & support. It is very encouraging. We hope that our story can help others going through this & other similar situations. It can be such a time of confusion & questions.

A bit of advise recently shared with me was to call the Dr the day after her appointment to ask for a copy of the Dr's notes. They are less likely to charge you for the copies here & there. Also make sure the patient box on blood work is marked so you get your own copy.

Jordan is a bit loopy with this new medication and the Depakote not yet fully reduced (it will take 6 weeks as we decrease 1 pill a week). She seems still in great spirit and walking is better but still not good in other ways. Hard to explain, but will try to get a video of her tomorrow to compare as we go. Can't seem to get her to eat much today but then again she is two....

Be blessed! And please continue to share & pray!
~Kelly

Jordan's diagnoses, Medication, PT schedule & appointments/referrals

March 18th 2009 after an MRI & EEG, Jordan was diagnosed with Myoclonic Seizures, a form of Epilepsy. She has been on different medication but her seizures are still not yet controlled. Her type of seizures, she may grow. October 2009 we started hearing that she might have Ataxia, but thought it was due to the seizures or medications. Which still MIGHT be the case. Yesterday we were told she might have Ataxia Telangiectasia. The only true way to know for sure is genetic testing for Jordan, Nick & myself. Me & Nick would have to both be carriers of a gene to have passed this on to Jordan. We did blood work yesterday to check her AFP levels which were 11.1 and normal ranges are less then 8.1 and her IGA Immunoglobulin A levels which was 30 and normal rages are 24-192. Both tests were also ran a year ago and her AFP was normal & now isn't, and her IGA was more mid range. They are running other tests too but these are the ones I can remember.

Last night Jordan started Keppra http://www.rxlist.com/keppra-drug.htm. She is taking 1.5ml twice a day. This is while we decrease her Depakote Sprinkles http://www.drugs.com/mtm/depakote-sprinkles.html. Each Depakote Sprinkle is 125mg at her max Jordan took 8 a day. Today we are at 5 a day & will drop one more off each week until she is off Depakote. She will continue to take Clonazepam http://en.wikipedia.org/wiki/Clonazepam .25mg daily and Zonisamide http://en.wikipedia.org/wiki/Zonisamide 200mg even days & 100mg odd days (very other day 200, then 100, then 200...) She is also on Carnitor http://www.rxlist.com/carnitor-drug.htm .5 ml twice a day. They first tried her on Lamictal http://www.rxlist.com/lamictal-drug.htm Jordan was allergic to it and we ended up at the ER with a rash.

We will keep you posted on Jordan results to these meds.

Jordan started Horse Therapy through Santa Ynez Valley Equestrian Center off Refugio Road this past week. She will continue with them once a week. She also has PT & OT twice a week with Heather & Fran through CCS (California Children Services). Plus PT & OT once a week through Early Start.

Jordan's PCP (Primary Care Physician) Pediatrician Dr. Brennan has approved for us to start going to see a Pediatric Epileptologist (Pediatric Neurologist who specializes in Epilepsy) down at UCLA. We have also confirmed that if CCS approves the referral they will cover the cost. It might still take 3 months for an appointment but I will work on speeding that one up.

This is an open blog & facebook page. If any of our information, situation, resources can help, comfort or encourage anyone else then PRAISE THE LORD.

PRAYER: God created Jordan, He loves her even more then we do, she is His child, and His child before she was ours. We are trusting in faith that the LORD does heal, He is the ultimate Physician.

New Seasons of Life

As we have been going through this journey with our daughter we are finding that speaking about the issues that we are dealing with, the Doctors, Insurance, and most importantly Jordan's health. We will be speaking of this here hopefully to encourage others as well as feel like we have a voice.