the list
We are leaving in 3 days for Detroit. This has been the most exhausting 2 years, planning this trip. I have stalked Dr.C for 2 years. no joke. Emailed him, begged him to see Kali. Why beg? Because our ins does not cover out of state visits. I thought maybe he could fly to Nc to see Kali. Joking? No. seriously. Ha!
My expectations are high and low. I have no idea what to expect. I am scared to even go there. I dread the drive. I dread the EEG. I dread that Kali has to go thru MORE test.
This is the list for Dr.C-
1) Kali screaming 24/7. It makes me crazy. It MUST hurt her throat? right? Why does she do this?
2) Kali sleeping issues. She does not sleep. Why?
3) her eyes. They do odd things.
4) her constant moving. She never stops moving
5) her feeds. She does not eat foods. Is this a sensory issue?
6)meds. more specific. Felbatol.
and of course the seizures. The most important question.
I have played thru every scenario in my head of what Dr.C can say. I am so OCD about everything, that this is the one thing I have no control over. I will either cry or shout Yeehaw. or maybe both?
Duke has also said they are very interested in the trip and what the results will be. If she IS a surgical candidate, then DUKE is always an option to do surgery.. but that is so far in the future, I cant let myself go there (yet)
We leave Sunday. We are planning on taking our time. think: stress free. 
Asheville Citizen times article on Kali
http://www.citizen-times.com/apps/pbcs.dll/article?AID=2009906270321
Thank You
Thank You everyone who came to the BBQ Saturday. It was better then I expected!! I wish I could have sat and thanked each person individually but we would still be talking! I am guessing at least 200 people came. Plus WLOS news came and did another small segment!
I am not sure of the total amount of $$, but I will let you know soon!
We want to Thank Accucare. They made ALL this possible. Without them, we would not be going to Detroit. They have not only made the trip possible, but they have also been the biggest supporters and I am honored to now call them my friends. They are good people with the best hearts.
Mrs.Henderson- She is super duper awesome! Everyone should have a Mrs.Henderson in there lives!
Mike (Husband of Jennifer Swann) He is awesome! such a good guy! He loves Kali and Kali loves him!
Everyone has really renewed my faith in people, esp in this day, when the world can be so mean and cruel, to know that there is still good. Makes my heart smile.
Ok.. so on to Kali news.
Last Sunday-still in Orlando She stopped eating. We were bolus feeding her, talking to the Dr’s. Dr.P thought it was due to the med change and it was a neurological thing causing her brain to reject her bottle. We decreased the felbatol back down to 1.5ml 3/x daily and we waited. She is now drinking at least 1 bottle daily and were still bolus feeding her.
Since we decreased the felbatol and she is now completely off the Klonopin, she is doing Ok. It really is a day by day thing with Kali. She is not having anymore clusters right now (which is great!!) but she is very somber. Very unlike Kali. She will still scoot around on the floor but not nearly as much as she was.
I have been in contact with Dr.C about this and he now wants to move forward with the Glucose scan rather then the FMZ scan. This is the big money test $$. Think about $6000.00 Big test. Thank goodness for the BBQ benefit!
We also heard back from DUKE regarding the EEG Dr.P sent them and they are very interested in the right frontal lobe and they want to move forward with the Dr.C trip and go from there..
so lots going on.. we have had to basically put PT on hold right now. The least amount of stimulation as possible for Kali right now is the best.
We are leaving next Sunday and driving half way to Detroit, instead of flying. Then we will drive the rest of the way on Monday. This will be much easier on Kali
Emma is doing great and so are the boys!
were home..
I will just start by saying it was HOT!!! dripping wet HOT!
The flight down was Ok, we had the lay over in Charlotte and we had to run from one airplane to the other.. 2 adults and 4 kids running (well 2 kids running and 2 kids in strollers) Yea, fun-not We arrive in Orlando and the MAW gal was waiting and took us to our rental car. Did I mention as we were leaving Asheville there were tornado warnings?? Yep. Ok.. so we get to GKTW (give kids the world) and WOW. It was awesome! The boys ran to there beds and Emma ran around like crazy and Kali was laid back.
We got the call from Calvin’s parents that they were in town, so off we went to meet them! My mom was also in town at this time so we met all of the parental figures at the hotel. hug hug kiss kiss good times! Then, the holderfields car would not start. ut-uh. We fiddle with this, run to Walmart, jump the car and off we go..
I had to go to group orientation, came home, fed the kids and off to bed. We did Disney the 1st day. FUN! There was a slight thunder/lightning storm but all turned out ok.. We had these handy dandy passes that moved us to the front of the lines. YAY! 2nd day we did Animal Kingdom. FUN! I highly recomend this park! Except do NOT go on Everest. That is the scariest ride ever. Seriously. Friday we did Epcot. Saturday the Holderfield/Strait reunion came into town and was in full swing! Had a wonderful time hanging out and catching up.
Sunday things went loopy for miss Kali. She was not happy. We ended up giving her exrtra Klonopin. Monday did not get any better for Kali. We had to give her Diastat. She cried for 24 hrs and was jerking pretty hard.
We made a decision to let Calvin ride home with Kali in Mimi & Papa John’s car and I took the 3 kids with me ion the plane. We were just way to paranoid taking Kali on the plane after the bad few days she had. Kali did Ok on the ride and the 3 kids did super on the plane. It was exhausting occupying Emma for hours at the airport, but we survived.
Kali is doing ok now. She is still jerking pretty hard, but im hoping now were home she can calm down a bit. Dr.Chugani visit cant come soon enough! We did increase her Felbatol to 2ml right before we left, she has also been having a very huge increase in saliva, not sure what is causing this??
We are having the BBQ benefit this weekend at Lake Louise from 11-3. If you can make it PLEASE DO!! We have an interview tomorrow for the Asheville Citizen times (eek!!)
Ok.. have to finish our 20 million loads of laundry.. will write more later!
Team Kali!!
We have had such a HUGE response from so many companies/business owners wanting to help us get Kali to Detroit!
I want to tell each of you THANK YOU. We are so honored and blessed to have so many people love Kali.
thank you thank you thank you.
love- Calin & Lisa
4 steps forward- 10 steps back…
this is what happens. We get ahead and go back. It is a constant struggle with Kali’s brain. Who will win the next battle?
We had weaned the Klonopin successfully. We were 8 days Klonopin FREE. YAY! not so quick..
Wednesday, Kali started to exhibit some very familiar jerks. Calvin and I thought she was having pain somewhere, we gave her motrin. Not helping. We thought maybe she was still constipated, nope. ALL pooped out. Thursday comes and she is jerking harder and more frequently. I call DR.P and he suggest we watch her further and see what happens in the next 24 hrs. We do.. still no change. She was not sleeping. Very irritable and jerking in clusters. Friday night she was jerking so bad that she was having clusters lasting hours.. not minutes but hours.
Saturday morning I called Dr.P and he suggested we start the Klonopin again. My heart sank. Calvin was upset. We need her OFF the med to do the PET scan in Detroit. We decided to watch her thru the day and see what happened, hoping by some miracle that the sz gods would give Kali a break. Nope. Got worse. So we ended up giving her a Klonopin. Within 2 hrs, Kali was not jerking as much and actually smiled.:)
So.. since we leave for Disney in 3 days, we have decided to give her the Klonopin thru the Disney trip and the day we get back start the wean again. She only needs to Be off Klonopin for 7 days prior to the scan in Detroit. So for now, we will give her 1 pill every AM and PM then cut the pill dose down when we return.
If everyone could say lots of prayers and send positive thoughts to Kali we would greatly appreciate it.
Saturday we went to the Philly Hoagie Shop. They were doing a benefit lunch/dinner for kali and 20% of the proceeds are going to Kali. These are the nicest people ever. They are such a strong family who have over come so much. I feel truly blessed to know them and to now call them my friend.
We leave Wednesday for Disney. The limo will pick us up @ 9:15 am and the flight leaves at 11:23. nervoous? YES! We have not packed yet, I am in denial. haha.
I will update again before we leave. Hope you had a marvelous weekend!
water play!
HA! This should be interesting!
Yesterday we had Kali’s eye Appt. We had to wake up at 5:00am to get to the appt by 8:00. The Dr is 1.5 hrs away , now I want to remind everyone this meant getting 6 people ready. Not an easy task. We managed. We get there, and wait about 15 minutes and they call us back. The Dr comes in the room, I will call her Dr. B. She comes in and she is questioning why we came to see her, why didn’t we see the pedi eye Dr in Asheville, Im thinking WHY DOES IT MATTER!!?? Were here woman. Do your magic. She does her exam on Kali, and decided we need to dilate her eyes. poo. So we torture Kali with this horrible act, I HATE THIS. I cried and Kali cried I think even Calvin almost cried. We wait 30 minutes, the Dr calls us back to the room and she does another exam, again TORTURE.
She tells us That Kali has astigmatism and she needs glasses. Are you serious? Has she seen how much this child moves?? She actually commented that Kali will be a hard kid to fit for glasses and be able to keep them on her head. She wants kali to wear them for at least 15 hrs/day.
She also said her central vision is good. Her side vision is not so good. She gave the diagnosis of CVI. So this means Kali will need to have visual therapy. We have been given a referral for the Governors Morehead School. They will provide the Visual therapies & hopefully give us feedback to help us keep the Glasses on Kali!
This should be interesting, I think were going to wait until AFTER the WDW trip before we fit Kali for glasses. I am kinda doctored out and so is Kali!!
Talk of the day.. POOP!
So today we took Kali to the GI Dr and talked poop & gas & constipation issues. good times. Dr. B has decided to increase Kali’s Zantac dosage to 2.8ml 3/x daily via g-tube and to try Little tummies senakot to stimulate her bowels .I told Dr.B that Kali screams for large portions of the day and WE feel it is due to pain. She does not poop regularly and she has some crazy gas So we will try this for a week and call with a update.
I talked to the PET center yesterday about our upcoming trip. We talked about the FMZ pet scan and what exactly will happen (or is supposed to happen)
Kali will be on the PET table for 2 hrs. She will be injected with the tracer (the radioactive med they use for this specific test) They will insert an IV for her sedation. The sedation is going to be tricky. Kali is allergic to phenobarb, and the sedation they normally use is Versed, this contains 10% of phenobarb. So we can’t use this. They will try another med called Chloral Hydrate , the problem with this, is that it is generally used in smaller children. So hopefully Kali will stay asleep for the whole 2 hrs. They can possibly push another med to keep her under, but I forgot that name of the med. This could get interesting..Im not going to stress about it. It will all work out, right?!?!
Our appt with Dr.C is July 9th @ 10:30. This is the most important day of our lives. Well, besides the birth of our children and our wedding day. I am trying real hard to keep it under control, but Im so excited/nervous/anxious/nervous/scared/nervous.. you get the point.
the MAW WDW trip is less then 2 weeks. Can you believe it!! Im seriously so nervous about it. the plane esp!
Alright.. off to change a diaper!
Quick update from appt yesterday..
We had our appt with the the Buncombe County schools yesterday to go over Kali’s IEP for the upcoming school year & discuss there findings from there evaluation done in April. Calvin was able to meet me and we met with the Speech/PT/OT therapist from the school board, plus the coordinator.
We went over the goals that they have set for Kali, then we added our own goals for Kali. They go something like this..
1) Kali to hold her own bottle
2)Kali to be able to calm herself without bottle
3)Kali to mimic sounds
4)Kali to coordinate her legs/arms/hands to move in a more rhythmic motion
We will begin our therapy services with the school system starting when school starts in August. This will be a big change for us, but I think it will be good.She will go 2/x weekly for 1 hr each time -this could change, but for now we think this will work.
They placed Kali at a 4-7 month level for cognitive, and 6-8 months for development. That is always hard to hear, but we expected that.
Last night, Kali had a very rough night. She was very very very cranky. We feel so bad for her, because we know it must be hard for her to come off the klonopin 
She is doing better this morning. We have an appt with the tummy Dr this Friday and her eye appt next Monday.