Kay's MRI Results/Javi's EEG schedule

I am happy to report that the results were NORMAL!  Yay!  

Next stop, Javi's EEG on March 12th.  He will have to be sleep deprived.  I think Mark and I will have to take shifts.  His schedule is go to bed at midnight and wake up at 4AM.  He has to stay awake from 4AM to noon when his EEG is scheduled.  Thank goodness he doesn't have to be food deprived.  That would be a really big problem.  Think we will go have breakfast at IHOP or some thing to keep us busy that early in the AM.

A Very Bunny Visit

Clearly, Fairfax, from Marissasbunny.com  (a site that promotes Infantile Spasms Awareness), was a bunny on the loose! He went from the east coast to the west coast. Now, he's on his way to middle America. Who knows where the wind will blow him next.

We were able to grab a latte with Fairfax, California style. He said he likes his coffee like he likes all the children he visits, SWEET!!



We also took Fairfax out for a Valentine dinner to Cheeburger Cheeburger where he was delighted to take a spin in a convertible.



We took him from San Diego to Los Angeles to pick up Grandma, then to the bright light city of Las Vegas, NV. Wish we could have gotten a night time shot of him on the strip, but we only went out at night once and he said he was so tired from the long drive, he wanted to rest in the stroller (we actually were so excited about the volcano, we forgot to get a shot of him).

Fairfax is enjoying the rare view of California's snow capped mountains.

Fairfax is helping to navigate.

Fairfax, in the middle of downtown Las Vegas

Fairfax had fun at Shark Reef Aquarium in Mandalay Bay, Las Vegas

We ended our visit with Fairfax with taking him to KIDS Therapy where Kaylee receives her occupational therapy and physical therapy.


We sure had a great time visiting with him!! Hope he has a safe journey!

New Tuesday Activity

An old friend of mine had invited me to go for a walk/jog around Lake Miramar.  Kaylee and I were happy to oblige.  As it turns out, she couldn't make it, so Kay and I had a nice walk/jog on our own.  We rescheduled with my friend for next Tuesday, but I think we will make it a regular thing.  We can go straight from physical therapy to the lake.  

It is a beautiful 5 mile walk.  

This is the point where I started to run.  I had planned to run at the 3 mile marker, but there was no 3 mile marker, so this had to do.

This last and only straight away before you reached the parking lot. Has a beautiful view of San Diego.  You can see all the way to the beach on a clear day, which is about 16 miles away.

Kaylee slept through the whole ride and woke up at the end.  I ended up having to walk a bit during that last stretch.  I really need some arch supports for my flat feet.  Mark says it's because I'm old

A few more things regarding Kaylee.  As it turns out, we are holding off on the orthotics for now.  Yay!  One less thing to fight her on.  Her new meds are going well so far, but we haven't completely taken her off the Topamax, so we won't know for sure until a month or so from now.

I will be starting a parent training speech therapy class that is funded through the regional center beginning on Monday night.  It's a nine week course, so I'm hoping it will be helpful in working with Kay.  That in combination with scaling off of the Topamax (which can cause issues with speech), we are hoping to get Kaylee really talking in no time.  She is probably at about a 12 month level for speech, so it's not too bad.  She says about eight words consistently, including Mama & Dadda.  So we'll see how that goes.

Trip to Dr. Neuro

This was another easy appointment.  We've had a lot of appointments, but thank goodness they have been easy!  Kay got a clean bill of health from Dr. Neuro.  We are still scheduling her repeat MRI, since it's been a while since she had one (last time was when she was 5 weeks old).  He said he would like to see her pick up in the development department, but otherwise is satisfied with her progress.  He thinks with continued therapy that things will pick up.  He definitely recommended adding speech therapy to her regime.  

We have also decided to switch AED meds.  We are going to scale off the Topamax and try Trileptal. The Topamax has worked great, but the doc and I feel pretty confident that she has beaten the IS, FINALLY!  Yay!! We believe that the Topamax may be effecting her speech, since her cognitive skills are fantastic, but she just doesn't talk much.  She says less than 10 words at 18 months.  The only way to see if it's seizure or drug related is to switch things up.  We are also hopeful that she will finally grow some hair too (hair loss is another Topamax side effect).  Not that her baldy little head isn't cute, but it's sad when she wants to put bows in and brush her non-existent hair.  She rests all my ponytail bands and barrettes on top of her head and does a kind of "TA-DA".  It's cute ;)  So, hi ho, hi ho, it's off to the drug store we go this afternoon.  Hoping we don't get any static from the insurance company with the new drug, like we did with the Keppra.  Doc said he has had good luck with insurance companies and Trileptal, so we shouldn't have a problem.  So we begin our three week scale down today.  Here's the schedule:

Week 1- 3 pills at each dose time, 90mg per day

Week 2- 2 pills at each dose time, 60mg per day.

Week 3- 1 pill at each dose time, 30mg per day.

All the while she will be going up on the Trileptal.  So fingers crossed everyone!  The Trileptal seems to have pretty much the same side effects as the Keppra, which were minimal, so we are hopeful it will work.

On a side note about Dr. Neuro...we got Javi's EEG scheduled to get him checked out.  He will have a few hour, sleep deprived EEG in March.

New IS Friend

I found a new IS friend that is local to our area.  Crazy enough, I found her through one of Ethan's friends at school.  Finnley has just begun her ACTH treatment and we are ever hopeful that it will stop her seizures.

As I read the following post for the first time, I cried knowing that yet another family was affected by IS.  But to see the message of hope in her mother's post lets me know that a mother's hope has no bounds.

I look forward to following their blog and Finne's progress and I hope you will too!  

They say behind every cloud is a silver lining. I like to imagine that lining is not only silver but full of chunky glitter and sparkle. Something that catches all the light and makes you look forward to whatever is behind that cloud. There is always something good on the other side of life's challenges. It may take awhile for us to discover it sometimes - but it is always there. What we learn from it will help us to grow and become stronger. If we don't learn from it - my experience has been that it will be taught to us over and over until we that lesson in.

A bit of a cloud presented itself this month to our family. I say a 'bit of a cloud' because nothing compares to the cloud(or trial) of almost losing a child. Paul was given a lay off notice at his job and has until the end of the month. One blessing is that his boss is going to carry our insurance until the first of the year. A wonderful blessing because Finn's next treatment will be around $100,000.00 and without insurance or a dead rich relative - treatment just wouldn't happen.

Job prospects are grim right now as we all know but we are hopeful for the change. If there is one thing we have learned this year - God knows us. He knows our family and hears our prayers. I always knew that - but know I KNOW that. I hope all of you know that. We are His children and are individually known to Him. He listens and answers in the way it will serve us the best. We may have a job tomorrow or it may be six months from now. Heck - we may be living with you! But we know that we will be where the Lord wants us and needs us. Not moving is of course our first choice but that glittery lining may be in Texas, Ohio or Bora Bora! I am personally hoping it's in Hawaii but only time will tell. (Can't you just picture that glittery rainbow over Kauai??)

Prayer strengthens us when we are scared and gives us hope when we are feeling alone. We are at peace with the job situation, calm even. So maybe that proves that we have learned a lot these past two years. It usually gets really dark and scary right before everything falls into place and we know where we are headed. It's not dark at all - maybe that means we have a long time yet... Or, that our perspective has changed and our faith has increased in His plan for us. How do people get a long in this world without the gospel of Jesus Christ?

Finnie's seizures have not gone away so we are on to the next phase of treatment. It should start within the next few weeks. I will have to inject her with the medication and that makes me a little nervous to be the one hurting her everyday but it's a necessary evil. She is doing well otherwise and smiling more and more. She LOVES Angie and they are so cute together. Finn just lights up when Angie comes into the room - it's so sweet.

more...

Sum it up...

Javi update on the school front...

Contacted Javi's teacher from last year, just at random to say hi. As it turns out, the ASD Program Specialist contacted her yesterday to ask if she would be the ASD consultant to observe Javi. We are thrilled with this, since she would know Javi the best in a school setting since she had him for two years in a row.

Also, just as I was formulating a response to her email....the Education Consultant I had requested through the Regional Center contacted us. Got him up to speed on the situation and now he'll be scheduling an observation too and attending the second IEP meeting.

Still feel that it may be a mismatched class setting for him. Javi gets really agitated when you ask him questions about school. He did tell me that the kids are teasing him and copying him during recess and lunch. He said "Yep, I'm still playing alone." Poor baby :( Breaks my heart to keep sending him when I know he is not happy.

Ethan has his Halloween parade and party tomorrow. We are making homemade popcorn balls to pass out to kids in class. The boys LOVED making popcorn on the stove tonight. They couldn't believe that you could actually make popcorn with out a microwave :) It really tastes a lot better than in the microwave. Javi said "Wow Mom, this tastes like the movie popcorn, but better." We just put a teeny bit of salt, no butter. Javi, Ethan and Daddy shoveled handfuls of it in their mouths. I'll probably have to make more popcorn before I can make the balls.

Kaylee had PT today. Ms. Bonnie, her regular PT is back, YAY!! She was happy with the progress that Kaylee has made while she was gone (a month). She did say we will determine whether or not her regular tennies will be enough support for her or if she will need orthotics. She is still pronating her feet. She said it's a tough call because Kaylee is not technically walking yet. She mostly side steps when she cruises. She did agree that it would be a good idea to look in to a pediatric posterior walkers since the doc said that the Topamax may inhibit her ability to build muscle tone at this dose. Since she already has low tone, it makes it tough. We are going to see if we can possibly check out a walker from the CP Library to see how well she does with it before we order one. Heh...maybe we can convince my grandma walkers are cool if Kaylee has one :)

Well, that's all for now. Have to get to making popcorn balls :)

We're home!

It appears the new dosage worked very well. We tried to force an event with drug deprivation, but nothing of any real significance occurred. There were a couple blips here and there, but nothing like she was having for the last few days. Isn't that Murphy's Law?! This is a time when we really like Murphy! We are hopeful that the Topamax will continue to work. Dr. Neuro raised her dose one more time, just to make sure and said he wants to see us back in December. At that time, we are going to schedule a repeat MRI just to make sure there aren't any tubers putting pressure on the right cortex where he found some slowing in her brain waves.

Her focus appears to be just in the left frontal lobe, so that was excellent new to hear that it is isolated to one area of the brain. He is still suspicious of TSC, but is anxious to find out what Dr. Genes will say at the end of the month. He wants my sister and I to get tested.

I am completely exhausted. I still plan on going to the RDI conference tomorrow morning. We have respite care coming in for eight hours a day to help Mark out. I'll only be away overnight. Well, I'd better get some rest and get to packing for my next trip! Thanks everyone for all your well wishes, prayers and phone calls. I know I haven't been able to get back to everyone, but I promise I will when I get home from my trip.

Back to Children's

We are all packed up and ready to go for our 24 hour vEEG. I have been pushing for it thinking that he would schedule us sooner than next month with all the recent activity. I called this morning about her increased spasms and CP seizures and left a message. A few hours later he called and left a message that he wanted to get us in tomorrow morning. EEG called us by 2PM and had us scheduled for 8AM tomorrow morning. Dr. Neuro mentioned in his message that he wanted to talk to us about treatment if the EEG reveals what we think it will reveal, that she is in fact having more clusters and complex partials. I am not sure if we will still be going in the same direction we had planned after he said that.

Kay isn't really sleeping well at night. We think that she may be having seizures at night, since this all began at the same time we noticed the increase in activity and before we increased the Topamax dose. Today the count for seizures I witnessed was two clusters and two CP's. Clusters usually last a little while, so I feel like I can catch most of those. Some of her CP's only last for a few seconds so there's a good chance I missed some, since I cannot hover over her all day (who can? She's always on the move, crawling around and getting in to everything! the little stinker!).

I will send updates from the hospital. I guess we will find out more info after he reads the EEG. Hoping for the best, but still preparing for what may lie ahead.

Fear of the Unknown

We have had the seizures kick back up again. We are going to have to increase the meds again tomorrow. More clusters and more cp seizures. One CP at lunch, one CP before we left for dinner. One cluster in the car while we were driving to the breast cancer fund raiser. My friend is doing the SGK 3-Day Walk, so she had her birthday dinner at a restaurant that was willing to donate a portion of the proceeds to breast cancer. Another small cluster at the restaurant. It seems like they are slowly ramping up.

I called Dr. Neuro's assistant and called the dietician to schedule an appointment so we can begin the Ketogenic diet soon. We should have an appointment set up by the time we hit our max dose of Topamax, I hope!

We are still scheduled to see Dr. Genes at the end of the month and still scheduled for a repeat vEEG at the beginning of next month.

We had PT today with a substitute therapist. Ms. Bonnie is taking some time off. I was picking her brain about Kaylee's flaccid muscles. She isn't sure why her muscles are not developing much given her level of activity. She's making progress with her abilities, but she said she doesn't have enough leg muscle tone or hip strength to support her own weight with out assistance. Hence why she is not standing on her own or walking unassisted. She doesn't have the muscle tone to balance her weight. I am getting nervous about her tone not improving much. We work with her so much at home. I'm not impatient for her to walk, I just hate playing the waiting game to try and figure out if there is some other underlying problem. I know they don't have a crystal ball to tell me whether or not she will walk well unassisted, but when ever I say "maybe she'll be walking by Christmas" they say "that seems like a reasonable goal". It's not the confidence they had when we went for our first few sessions that she wouldn't be needing therapy for long with the progress she made in the beginning.

I hate and fear the unknown. I am more confident that I can deal with emotional blows, but it's the wait and see stuff that sends me. I want to know one way or the other. I guess all we can do is hope. I know that's all anyone can do for their child. Everyone has hopes and dreams for their child, but they are a little different when you have kids with special needs. Most people dream of their child going to college, having a good career, having a family, owning a home of their own. For us, we dream of the things many people take for granted. Performing self care tasks independently (dressing, showering, preparing food), be completely potty trained, tie shoes, follow directions, communicate well, make friends, walk, run, play a team sport effectively, ride a tricycle or a two wheeled bike, read at grade level, use money, etc. All these things that you almost anticipate as an automatic is a challenge for my children. Some of these things may never be mastered.

I just ache sometimes knowing what a challenge everything is for them. How must they feel waking up every morning and willing themselves to get up and face all their challenges head on each and every day. I can see how life can be so frustrating. Sometimes it's easier to throw a tantrum than to have to deal with one more thing!!!

So here's to our brave children who get up every day and face their fears in this wobbly old world every day. They are a lot braver than I am!

Update, Dr. Neuro

We talked with Dr. Neuro about Kaylee's seizures, he gave us a few
different treatment options.

1. Increase her Topamax to the max dose slowly and see if it curbs the seizures and spasms.

2. See the dietician to begin the Ketogenic Diet.

3. Vigabatrin

Dr. Neuro said he doesn't need to do a repeat vEEG to confirm. He said if it looks like spasms, it's spasms. He said he didn't want to waste time testing, he wanted to move straight to treatment. Given that her other seizures had kicked up in frequency as well, he felt that we
needed to move quickly. He said he was confident that I knew what to look for.  Also, it doesn't really change the course of treatment, since we are not going to use ACTH again.  She didn't do well on ACTH and it didn't work well on her either.

It wasn't the answer I was hoping for at all. I wanted him to stand up and say, no, you are probably wrong, there is nothing to worry about. Our Dr. Neuro puts a lot of stock in a mother's intuition. He thinks that more doctor's need to listen to that instinct.

We have not made any firm decisions on treatment yet, but we are leaning toward diet and Topamax. For the time being, the increased dose of Topamax has kept the seizures at bay. She has been very wakeful at night, so we are not yet certain if that is from seizures or from increased meds. The doctor said we need more time to see which one it is.

It's very disappointing.  We really thought we had the IS beat.  We were pretty knew we may never be free of the Complex Partial's, since she had occasional seizures with TSC.  I guess we just feel blessed that we were free of the IS since the end of April 08.  One year ago almost to the day is when the IS began and we have come a long way since that bumpy road.  October is our favorite month, but these last couple haven't been so great.  We are hoping we won't be celebrating another one of Mark's birthdays at Children's Hospital.  As nice is the hospital is, it's not a good place to party :)  Kaylee has plans to dress as the "littlest angel" for Halloween, so we are hoping to be able to do the typical dressing up and trick or treating this year.  It will be her first, since she was on ACTH and in misery last year.  She had swelled up so much, we couldn't zip up her costume.

Calling on all prayers to see us through this rough time.  Hoping for a speedy cessation of the spasms and are next course of treatment will work with minimal side effects.

Return of the Spasms?

Well, we have had a few more of the complex partial seizures than normal. She may have 3-4 a month, but this week, she's had seven in the last four days. I spoke with Dr. Neuro today and he decided to up her dosage of Topamax. He said that if we didn't see a reduction in her seizures by Monday, that he wanted to move up her vEEG and possibly change her meds. We discussed putting her back on Keppra, since we had great luck with it before the onset of the IS. We were so confident that the spasms were not going to return, but two hours later, I took some video of Kaylee.

I just stared at her, completely frozen when it first began, even though the camera was right in front of me. I was in such shock and disbelief, that I guess it just didn't process right away. She was making these movements for a good two minutes before I started filming and they occurred every two to ten seconds. The whole top half of her body would stiffen up. Please comment and tell me what you think. I will be calling the doctor tomorrow.




I'm trying not to get too upset about it yet, because I have only caught it once. She's definitely been making some weird movements lately, but we have been so busy this week, I haven't had a chance to just stare at her to see a pattern. My gut tells me that this isn't good, but I want to see a pattern before I start to worry. We know that even if it is, ACTH is not an option for us. It didn't agree with her the first time, so we will definitely be headed toward Vig. I actually already have the referral letter to a doctor in Mexico just in case the Topamax didn't curb the spasms when the ACTH didn't work the first time around. We'll see what happens tomorrow. Please pray that I am wrong...

Facts about IS from MarissasBunny.com

Stand warned, there’s mathematics and drama ahead.

• There are approximately 305,297,000 people in the USA

14.02 children are born (and survive three months) per 1000 people in the USA every year.

= 4,280,000 babies will be born and survive to three months old

Infantile spasms prevalences in research are variable and depend on which source you refer to. I’m going to estimate conservatively and assume a 1:1 male to female ratio, and use 1:4000 for males, and 1:6000 for females, averaging out to 1:5000 births afflicted by infantile spasms. The ratio is actually 1.05 to 1 male to female, so the actual number of IS kids is a bit higher.

So, with 4.28 million babies and a 1:5000 infantile spasms affliction rate:

• 856 kids a year are diagnosed with infantile spasms.

Infantile spasms resolves itself into something else at approximately 2 and a half years of age. Following that logic:

• 2,140 sufferers of infantile spasms currently less than 2.5 years old.

Infantile spasms is fatal in 1 in 20 of these kids before age 3, not due to accident. That makes 42 kids a year. ACTH treatment mortality ranges depending on the literature between 1:20 and 1:30. For the sake of argument, we’ll say 1:30, and that will account for both kids that go on multiple courses of ACTH and kids that never do. That’s still an additional 29 kids a year.

• 42+29 = 71 kids die a year from infantile spasm related causes

Removing all mortality statistics from IS kids, that’s 786 kids that survive to age 3. Accidents from drop seizures following IS resolution claim some more before adulthood at age 18. The numbers on accidents are fairly staggering depending on your source, but I’ll call it 1:20 again, for the sake of conservatism - this number goes very high in some studies. That’s another 40 kids before age 18. 746 kids survive to age 18. Overall mortality before age 18 is then about 12%- one in eight.

One more time, and in bold. One in Eight.

Look around your town, your supermarket, your place of work. Would you notice one in eight people gone? In what world is a 1 in 8 mortality rate un-noticeable or inconsequential? How many of these kids can be saved with better research, quicker or more accurate diagnoses, more community awareness, or a better support mechanism? I’m sure it’s not all of them, but given the current state of research on IS, a small improvement would make a huge difference.

IS kids have had one voice in the past- Danielle Foltz talked to the Joint Economic Committee in July about the price of rare disease drugs. Penny-arcade.com helped me reach over 60,000 more people, but it’s still not enough. I’m not Superman. I can’t sweep across the country bearing a red cape and talk personally to the parents of all 2,140 kids with infantile spasms, I can’t even catch the new diagnoses. It’s asking a lot of the parents of IS kids to be a public voice for their children individually.

Even with everything else going on in our lives, I’ve started the wheels in motion for a foundation for promoting awareness and providing support to IS parents. This is going to take time and money, so be patient with us. A week or so ago, I spoke with Mike Bartenhagen, another face in the battle against infantile spasms, about this and we’re both on board with this idea. As a group, we’re stronger and louder than we’d ever be individually.

If you want to help, please contact us. If you’re a parent of an IS kid, and feel you can offer sympathy, support, or advice to other IS parents in the future, especially the ones with new diagnoses, please let me know. Financial help is always welcome- please donate through the front page. These are the early, fragile days of any new foundation-to-be, and any and all help is welcome.

ABOUT MARISSASBUNNY.COM - Marissa is a baby girl who was diagnosed with Infantile Spasms on February 15th of 2008. Infantile Spasms is a serious pediatric epileptic condition that could leave it’s mark on her for years to come. Fairfax is Marissa’s Bunny - a shared name for stuffed rabbits that are traveling the world trying to spread awareness of her disease that has no reliable cure and is hard to relieve. Marissasbunny.com is a website dedicated to spreading the word about infantile spasms, with the goal of better diagnoses and enhanced support for parents with infantile spasm suffering children.

TheSqueakyWheel.com

Wouldn't you know it? They have a site made for us squeaky wheels!! They also categorize by "Price Unfairly Changed". No complaints about Questcor yet. I'm surprised!

The Walrus

After reading Danielle's post today,  these images came to mind:

Well, as you may have guessed, the Walrus is Questcor, manufacturer of Acthar Gel (ACTH) .  Fat, bloated, and whistling all the way to the bank, charging up to $25k per vial of Acthar.  The oysters, are our children, who have no choice but to follow since there really aren't a lot of options for them.

Who is the carpenter in this story?  According to some, the carpenter did no wrong because he didn't technically eat the oysters. But he aided the walrus in the deception, and even built the shelter in which the oyster's were eaten.  

Does the carpenter remind you of anyone? Who's side is she on? Some would say she is somewhat sympathetic to our cause, some would say she's aiding Questcor to continue their evil ways. Read the post and judge for yourself.

All images are copyright of Disney and are reproduced without Disney's permission. They are for entertainment purposes only.

vEEG Update

We just got off the phone with the tech.  We are scheduled for Nov 10th for a 24 hour overnight.  I know it seems like a long time from now, but when it does happen, hopefully it will be a vindication that the worst is behind us.  Kaylee is continuing to make progress and we are hopeful that she will be walking in the next couple of months.  

Frustrated

I am so frustrated with the EEG department at our Children's. We have been trying to schedule an EEG for nearly a month now. First, the doc said we had to wait for approval and they would call when it was approved. So me, trying to be patient, I waited two and a half weeks to call to see what was happening. I called the insurance group to see where we were at and they said, "Oh, you don't need approval. You just need a referral." UGH!!

So I called the doc, they transferred me to the EEG department and gave me the direct phone number. Well, that was on Monday. Left a voicemail, no call back. Wednesday, left another voicemail, no call back. Thursday, called again, then got voicemail and decided to press the extension for emergencies or immediate contact and it kicked back to the same voicemail!!!! Ahhhh!!! So then, I hung up and called the neuro's assistant. I got her voicemail. She did call back an hour later and said she tried to contact them, but they were gone for the day. She asked me when I would like to be scheduled, in case she could just make the appointment for me when she called them this morning. To which I said, ASAP, just needed a 24 hour notice to arrange for childcare.

The assistant did call me back this morning while we were in therapy and got my voicemail. She said that she spoke with a tech and that they would be calling me this afternoon to schedule. Well, guess what????

NO PHONE CALL!!!!!!!!

If it's taken me a week, just to try to get a hold of them, and still unsuccessful, it may be a month before we can actually get an appointment. I'm ready to just go down to the hospital and demand an appointment.

Show your support!

Our friends the Foltz family, just received news that their son Trevor has had a return of his infantile spasms.  Trevor had gone through a round of ACTH right around the same time as Kaylee and was seizure free for about eight months.  Danielle (Trevor's Mom) had testified in front of the JEC in Washington in July about the price gouging of ACTH by the pharmaceutical company, Questcor that manufactures the drug.

As you can imagine, they were devastated by not only by the news of their son's return of Infantile Spasms, but also torn by the fact that the drug they are recommending, once again, to treat his infantile spasms is ACTH. 

Yet again, they are having to deal with the same hurdles they went through with the first round of ACTH.  Questcor makes the process of obtaining the drug so difficult.  Not to mention the cost takes a significant chunk out of Trevor's lifetime insurance cap at 17 months old.   This is a drug that just a few years ago cost around $1500 per vial, now costs $25,000 per vial.

Today she posted an open letter in response to new the CEO of Questcor, Don Bailey.  Please take the time to visit her blog and post a comment to show your support.  Our hope is that by getting the word out, Questcor will do something to facilitate change in policy of obtaining the drug or lower the price to make it more accessible to all that suffer the devastation of infantile spasms.

Share your lovey

I thought this was the cutest idea. I found this blog through two other IS friends' blogs. If you have a moment please check out their site. They have a Marissa's Bunny, Fairfax a stuffed animal lovey that was given to her by daddy, traveling around promoting awareness about IS.

Kaylee has the "love bug" that was purchased at the hospital and has made two hospital trips and will be making coming with us to our next hospital stay. Our other hospital comfort is the butterfly blankie from Godmama Amber (We love you Ambu and can't hope you are having fun with your family). They have both made the trips more comfortable for Kaylee in the midst of all the pokes, prods, goop, wires and meds.  

Here's the love bug watching over Kaylee 

and the butterfly blankie that keeps her 

warm in those drafty hospital gowns.

I think everyone has their hospital ritual. It makes the trip more bearable. I like to get out and take a walk in the CHSD wagons with Kaylee and the boys, when all the beeps and bad new start to become too overwhelming.

Javi, Ethan and Kaylee in one of the CHSD wagons.

This is one of the many courtyards that has grass and

little tykes play stuff.  It was nice to take a walk with

kids and pretend we were at the park instead of with 

our very sick daughter.

What is your child's hospital "lovey" or your family's hospital ritual? Please share pics or comments.

Neuro logic?

Today's appointment was frustrating to say the least. We walked in to a very busy waiting room, so we knew that we were in for a rushed appointment, which is the last thing you want when you wait almost two months for an appointment.

We were seen in a timely fashion, as usual and our doctor was very pleasant as usual. He is a nice doc and has an excellent bedside manner, however, on this particular appointment, I have to question his logic.

I reported that Kaylee has been making some strange new movements, but we haven't seen her make the exact same movements each time that we have noticed. They are similar. She gets a blank stare on her face then kind of holds her hands up. She does this about 4-5 times a month, so it's not all that often. However, she is on Topamax.

We also reported that we were unsure whether or not she was having seizures at night, since she hasn't sleep in our room in months.

We reported her results of her OT and PT evals and the EI's reports. She is currentlyfunctioning at about an 8-9 month level overall. She is going on 13 months now.

He basically told us that because she was making progress he wasn't concerned. I asked why he wasn't concerned, since as of our last appointment she was only about a month or two behind. He said that since cognitively she seemed on track, that he wasn't concerned with the fine and gross motor being off.

He also seemed very fixated on the diagnosis of TSC, even though I had brought up that she doesn't show any other symptoms of TSC. Our family shows some symptoms, but nothing conclusive. She has completed the genetic testing which was also inconclusive.

I challege the diagnosis because I just don't get a strong gut feeling that it's right. My gut has been right so far, so I tend to listen to it.

I am concerned about a 13 month old baby that just began crawling two weeks ago. Kay is not standing on her own or walking. I know that the walking deadline is 18 months, but I'm not going to burry my head in the sand until then. Sorry, I made the mistake of listening to a
doctor tell me my baby was ok once already and Javi turned out to have Autism. Fortunately, Kay already receives a lot of services that Javi missed out on with out a diagnosis, but that is exactly my point, how far behind would she be without them? Would he be more interested in
getting to the root of the problem then?

We are in the works for a repeat vEEG, but I pretty much had to push for a repeat. He increased her meds for the time being.

I know that it may not change the treatment plan, but something tells me something is a miss. I think it's time for a second opinion.

Shanna Grimes
(Sent from my iPhone)

PT Eval

We had our Physical Therapy evaluation today. Looks like Kaylee is pretty much what EI had said. She is testing at about a 7-8 month level in a gross motor. It was something we were anticipating. We are going to begin therapy in August. They are a little short staffed at the moment, so that is the reason for the delay.

She actually had a really great day at the eval too. We figured out that she does much better on a "wrestling mat" when her knees aren't touching the carpet. We aren't sure yet if it is a sensory issue or the lack of padding on her knees. She has little to no body fat, so I can imagine it would hurt to be her knees all the time. We have an OT eval on Thursday, so we'll see how that goes.