As I am typing Gabriel and Chuck are in an ambulance going to Children’s Mercy for the 2nd time in 2 days. They are on the way now because Gabriel had a 9 minute full seizure. We gave emergency meds after 5, called ambulance. When they arrived 5 minutes later the seizure had slowed significantly and the emergency med seemed to be working as Gabriel was very sleepy. Tonights seizure were nothing compared to last night, so at this point I expect they will be home in a couple hours and I will take over Gabriel duty so Chuck can rest.

Last night Gabriel had a seizure that started at 12:30 and lasted almost 30 minutes. It was a full seizure that stayed active for about 8 minutes then slowed down a bit to consistent rhythmic hand, mouth and face ticks. We were taken the ER by ambulance, they drew some blood and monitored him. They gave us the choice to go home or stay in the ER and possibly be admitted for monitoring when a bed opened. Initially we had planned on going that route in hopes of seeing Gabriel’s doctor in the morning. A few hours later a different doctor came in and explained that we may or may not get to see Gabriel’s doctor if we stayed. She said it was fine it we stayed and that a prolonged seizure as scary even to seasoned parents like overselves but that staying would mean they are just essentially just monitoring him, not making longer term plans. We decided it was best to stay away from the germs and got home as most people’s alarm clocks were going off.

I really appreciated the doctor’s compassion in saying that even for seasoned parents a prolonged seizure is scary…..because it really was. I was in a NyQuil haze through the whole evening…I had not slept well for many nights and wanted a good nights sleep before heading to work with my preschoolers……and even though I felt calm…I kept thinking…this could be really bad….this could be really bad. It was so nice to be in the hospital ER room knowing that there medical professionals right there if we needed them. They kept coming in and saying how sorry they were that we had to wait in such an uncomfortable room. I did not care at all because I felt safe and that my boy could get help if he needed. The feeling of helplessness when the seizures won’t stop is almost unbearable at times. Especially since G is such a strong kid and does all he can to fight through them. I am deeply thankful for the medical personal out there who serve the weak and wounded.

Gabriel’s life right now is full of highs and lows. If you had seen him early today you would not have guessed that he had been in the ER last night or that he would heading there again right now. He had a really good morning, was very talkive and played tons! My parents came down around 1:00 to give Chuck and I some rest time since we had been awake in the ER all night. Gabriel played nonstop with them all afternoon! He got a little woobly and started having his little tremory seizures in late afternoon and they progressed throughout the evening. We did not insist that he slow down and take a nap because he was playing so happily. Chuck and I went out to dinner to celebrate his 40th birthday (We are officially calling a DO OVER on his birthday this year) and as we were pulling into the drive way my Dad called to say that G was 2 minutes into a seizure

That’s the story for now. 🙂

Specifics prayers at this point would be:

1. For the effects of the antibiotic to wear off (they are causing this round of crazy)2. For Gabriel to eat and sleep in a good pattern.
3. For his body to stay in Ketosis (this stops seizures).

4. For rest, not just sleep but rest for all of us! 🙂

I went to Curves this morning to workout and God met me there. I usually go in the evening but knew I wouldn’t make it tonight, so I went this morning instead. While I was working out I started chatting with a nice woman named Penny. She was saying she spends about 2 hours a day in intercessory prayer, that she has a list and prays for each person on her list by name. As she was saying this I was thinking, I should ask her to pray for us. We chatted about a variety of things, I talked about how my son has epilepsy and we go to lots of doctors appointments,etc. As she was leaving, she asked my son’s name. I told her Gabriel. Her face lit up and she said “I am already praying for him! but I had that his Mom’s name was Liz”. At this point I remembered a day this summer when a woman Liz and I were talking about our children on hard to follow diets, her daugther has diabetes. Penny was there that day as well and asked us our names as well as our kids names and told us, she would be praying for us! It was amazing to realized that one of God’s saints has been faithful…and I mean with a capital “F”–Faithful in praying for us. Penny touched my heart and soul in so many ways. She even commented on how glad she was that we had met and that it must have been God’ plan because she almost always workouts out a different time. 🙂 Go God…. sending us both there at his appointed time, not in our schedule but his.

I am glad to get to write a happy blog, The last several weeks have not been great for little G. He of course, is still wonderful and so strong but between being sick and the follow up seizures it has been tough. I had to miss work this week on Thursday and I hate feeling like I am letting people down. It looks there is a good chance we will end up at the E.R. tonight to get a medication load. After months of several days in a row with tons of seizures, Chuck called the doctors office again today and asked very specific questions. Once we asked the questions in the right way we have a new clear plan for days like this. If 3 seizures in 30 minutes use emergency meds, if seizures start again go to ER for medication load to stop the seizures. So glad to finally have a plan and pretty annoyed that it took 6 times of Gabriel’s little body going through this before there was a plan in place. I tend to be passive with the medical stuff, just listen to what they say and do it. Gabriel is very lucky to have a daddy, who is truly his advocate and asks questions until he is sure the medical team understands what is happening.

Right after I typed this we decided to take Gabriel to the ER…he had many more seizures after we used the emergency meds. Chuck took Gabriel to the ER and I stayed home to cook. Yep, that our is crazy life. I actually stayed home to cook meals instead of going the ER. If he had been admitted we didn’t have enough food to take to the hospital. So we followed directions and took him the ER.  Just like several months ago, they did nothing, had no record of the plan from g’s docotor, and suggested changing his meds(chuck said everyone was very very nice). Sigh…frustrating. Gabriel, however, had a great time as the hospital, as always.  They let him play Thomas, he watched YO Gabba Gabba, played with PawPaw (my dad, who came to help) and even asked for a mask 😉

I wanted to share one of my favorite new songs. Speaks to feeling tired and worn out yet hopeful for better times. It is so identifiable no matter what stresses are going on life. Click on the link below. I am not good enough at blogging yet to get the video just to show on the page.

My favorite new song

The last couple weeks have been interesting. I was really looking forward to a couple weeks off work to have some downtime. I had big hopes of potty training, play dates and a totally organized house. Instead we had a great Christmas, then 3 days of tons of seizures, followed by big fevers, dead nerves in teeth and a very sleepy kid. As of today Gabriel has been either having seizures, sleeping 22 hours a day or fighting a fever and cough for a full week.

When I heard this song…I thought that is exactly how I feel! I am just worn. So strange to me that I am feeling this way now after slowing down and recoup time. I think we have been running in such a nonstop adrenline frenzy that I didn’t realize how deeply depleated I was internally. I knew I was physically exhausted and tired all the time. It has been strangely cathartic to have the time to finally process internal thoughts and emotions instead of just rushing from one thing to the other.

Today has been kind of tough, Gabriel had 4 big seizures over night and now seems to have started his monthly round of tons of stacked little seizures. Super Boo. I was thinking that we may have escaped the multiple seizure days this month….literally this morning I told my friend that I thought maybe the new medication he was on had kept them away.  So for the 4th month in a row we have had tons of seizures during a full moon.  What craziness!  I feel like we are secret werewolves who have to dread the full moon now 🙂

On the up side, Chuck has been able to home a lot the last week. It has been really great to have some family time.  We have gone to Toys-R-Us, the library, seen Christmas light and train displays together. Seemingly small things but for our busy family the simple things have been wonderful. Santa came to our house on the 26th because he needed time to finish assembling a drum set.  Yes, we are officially certifiable! 🙂

What kid wouldn’t love to come down Christmas morning to find this?

He was jamming right away.

He got a cool megaphone that he calls his “all aboard”.

He is wearing a scarf that was wrapped around one of my gifts. He loves the scarf and has worn it several times just for fun since.  He has also loved playing with his new garbage truck, helicopter and ambulance.

In other news Gabriel has been eating things other than pizza! Woo hoo!  He has started eating some new chocolate cookies, cheese and pickles and puffs again.  It has been nice to cook things other than only pizza.

We hope that everyone is having a great holiday season!

 

We had Gabriel’s latest neurology appointment on Wednesday. We are currently increasing the dose of his new benzo (type of med). A few weeks ago we changed from 1 benzo to another and while he was on higher dooses during the change he did really well. Had 6 or 7 days without seizures. Best days we have had in a very long time! We did the medicine change instead of weaning meds after his most recent EEG showed no change. Had the EEG showed some change we would have weaned medication but without any change we are unsure how much work the diet is doing. The change in meds seems to be going well. The doctor also referred us to a Behavioral Neuropsychologist (I think that is what the specialist is called) for an eval. Gabriel is exhibiting some behaviors that the neurologist thinks may indicate something called PDD (something on the autism spectrum). The neuro said it can take months to get into this specialist. Kind of overwhelming to think about, so we are focusing on treating the seizures and epilepsy right now. We can deal with any other diagnosis as they come.

In the mean time his physical and occupational therapies continue to go very well and he really enjoys them. We are also in the process of working with our local school district to continue Gabriel’s assesments and receive possible educational and developmental services.

One of the pastors at our church recently talked about Christmas being the time of year when light overcomes the darkness. That as with the winter soltice the darkest days are behind us, and that Christ coming to the world brings light and new life. We hopeful that maybe the darkest days are behind us….we are looking forward to more periods of good days and less seizures.

It has been a good week at our house. Very few seizures. An active, talkative boy ready to take on the world and good company!

Some awesome friends came and helped me cook for G! We set a record of over 30 pizza’s made and tons of ingredients measured!(this is a  picture from November’s cooking night that I never got posted).

I finally remembered the camera and took some pictures at therapy today. He loves physical and occupational therapy. The therapists do an amazing job of making him work really hard but still have tons of fun.  He did a lot of core/ balancing work this week. We are working on building up his balance and muscles so that they become second nature again.

He climbed over huge pillows (the jungle and the water)

He shot tons of baskets from the balance ball.

He loaded the medicine balls into “santa’s sack”

then pulled it down the hall to help Santa deliver the toys.

Then he strengthened his grip by swinging on the trapeze over the water (blue mat) into the jungle(colorful pillow).

In the last couple weeks we have gotten these AMAZING mailbox blessings! Anonymous gifts with sweet and simple notes attached! I hope, hope, hope, hope that the people mailing these thoughtful and generous gifts read the blog because I want to say THANK YOU!!!!!!!!!!!!!!! We are so tremendously blessed by your thoughtfulness. I have loved giving secret anonymous gifts to people in the past and only hope those I have tried to bless felt as amazing inside as we do.

 

 

 

It has been a whirlwind of craziness since we got back from John’s Hopkins including an eeg, new meds prescribed and way more seizures than we would have liked.  We just survived our 3rd round of 2-3 days worth of tons of seizures. We have seen this pattern 3 months in a row now….I realize this sounds totally crazy but each time it has been during a full moon….so with no other logically explanation…I am blaming it on that 🙂

I am going to have Chuck write a blog on the medical decisions we have made and why because he understands them better and can explain them.  I am excited to write a blog today with lots of pictures sharing the latest things G has been able to do.

Grandma Gaye and I got to take G through a local drive through Christmas light display…He loved the gingerbread house display……

and the train!

he had this look of awe the whole time!

A couple days later he got to ride on Christmas train with Nonna, Grandma and Daddy.  He was having lots of seizures and wasn’t able to communicate a whole lot during the train ride but talked about it a lot with Mommy after he got home.

Ready to board with Daddy.

I love this picture because he is holding both his ticket and “the little handle”. Almost every picture from the train ride has him holding on to this little chain. He excitedly told me “I pulled the little handle!”  He was convinced that by holding on the chain he was pulling the little handle and making the train go! 🙂 Sweet boy!

Just a photo I love!

So of course, after the great holiday light show and train ride, we had to get our own lighted train for the yard!

We hope everyone else is enjoying holiday experiences and traditions with their families and loved ones.

It is hard to believe that a week has gone by since our appointment at John’s Hopkins. A lot has happened in the last week.

We took Gabriel to the hospital today for a follow up EEG. The Dr. at Johns Hopkins recommended this to compare to the EEG from May to see how the diet has worked over 6 months. It will also give us a baseline before we start pulling meds. He had 2 long seizures in his sleep. Not glad that he had them but we have been trying to describe these to our doctor here in Kansas City since July. So we are glad that there is an EEG that caught them, so he can see the brain activity during them.

We are continuing to explore all possible resources for Gabriel. He is having lots of fun at therapy. It is great to see him practicing the physical skills of balancing, pushing, pulling, walking up stairs and having success! Each week we get good tips for things to try at home. I hope to get some pictures to share on the blog soon.

We are working with our local school district as well. We did a baseline evaluation in April, in which he blew through all the developmental areas with ease. At the time they seemed confused as to why we were there. When he went last week he passed 4 of the 10 areas. They recommended further evaluation in 6 areas including speech articulation, attention, fine and large motor and a couple others. While none of this surprised us, it was still disappointing to have a clear comparison that showed his slowed development. Thankfully he is still doing well in things like letter recognition and matching, cause and effect. I can also tell he continues to learn new words and basic science concepts. So while he is not where we want him to be, he is continuing to develop in some areas and we have plans in place to help where he is not.

I found a devotional book on amazon a few weeks ago that has been so helpful. It is called A Different Dream for My Child.  The title grabbed me right away.  I liked it more than the other phrase “a new normal” that i hear and use a lot for our lives. A reminder that I can still dream for Gabriel’s future, while accepting the new normal has brought a nice balance to me internal dialogue.  The book contains stories from other families wrestling with a variety of diagnosis, along with thoughtful questions to process and scripture.  Each time I read it I feel a little calmer, a little less alone and a little more hopeful.  I am attaching a link in case anyone reading this would like such a resource for themself or someone they care about. They also have one for special needs families.

http://www.amazon.com/Different-Dream-Child-Meditations-Chronically/dp/1572933070/ref=sr_1_1?ie=UTF8&qid=1353506718&sr=8-1&keywords=a+different+dream+for+my+child

So while my dream for Gabriel always contained things like drivers licenses, college, marriage and career….now it is simplified…….safety, happiness, love, self confidence.  The two dreams are not that different I was just filling in the blanks with what I thought would be a good life.  While I am not giving up on any of the things in the first list, I am not focusing on them as whether or not we have given him the tools for a successful life.

Johns Hopkins Trip.

To get right to the point it was as great trip and the Doctor was awesome.  After having a doctor that is a bit overwhelmed and doesn’t listen all that well here in KC, this experience was a polar opposite.  I’ll say more about that later.  The long and the short of it is, He is not 100 percent positive that Gabriel has Doose.  He basically feels like he has some of the elements of Doose, but also some of Dravet’s syndrome which is a more severe syndrome with a bit more disappointing potential outcomes.  But there are also some things that make it unlikely to be Dravets, for example, he was a little surprised that when Gabriel has a fever he doesn’t have seizures.  Dravet kids have tons of seizures with fever or even with excess heat.  So basically he just said that its hard to tell exactly what it is.  He said that sometimes younger kids with Doose don’t respond as well to the diet and it can just take some time to kick in.  We weren’t really surprised by any of this.  We’ve been bracing ourselves for the reality that we might not get to seizure freedom like we had hoped when all this started, and particularly when we started the diet.  He confirmed that we have been doing everything we can to maximize the benefit of the diet.

He recommended several things.  One, he suggested that we try some intermittent fasting particularly when the seizures are really bad.  He said that in his experience this has had some good effect with some of these kinds of cases.  Second, he suggests that we begin trying to wean medications.  This is for two reasons.  One, he felt like G seemed overmedicated and that some of his developmental delay issues are likely related to the amount of drugs he has on board.  So he suggested that we start weaning the most “potent” drug he is on.

This will tell us one of two things.  If weaning the drug had little to no effect on the number of seizures (i.e. they stay the same in number and intensity), then we know that the diet is doing the heavy lifting on the seizure reductions we have seen so far (about 50-75 percent lower than pre-diet).  If his seizures spike, we get a clue that the diet may not be doing as much as we had hoped, and that the drugs are the thing helping the most.

All in all fewer drugs is better as long as we don’t see a spike in seizures.  So that’s what we are going to try next. It will take 6 weeks if everything goes perfectly to wean the first drug.  Then we would do a second, and a third.  Given our track record were not really expecting things to go perfectly so it will likely take longer than this.  If the seizures spike we may stop or reverse the drug wean and try a different one.  So that’s what we know for now  and that is where we are headed.  Oh and he wants us to get another EEG to see how the diet has  effected the EEG results since we haven’t had one since may.

As for the visit itself.  There couldn’t be a more stark contrast from our current doctors.  Johns Hopkins is world class, everything was smooth and well organized.  Instead of having a nurse call you in and weigh you  and then put you into a room to wait for 20 minutes, the Doctors themselves come out and call for the patients and stay with them the entire 1 hour appointment.  He asked a ton of good questions, listened to us, etc.  Also the dietitian was in the room the whole time and you could tell he respected her and turned to her for information that he didn’t have etc.  Finally when we left he made sure we knew we could contact him by email (yes email) if we had any further concerns or questions etc.

I wouldn’t say we got great news, and we weren’t expecting to have some sort of miraculous game changing answer.  We do feel good to have a solid plan with clear next steps – something we have had on hold for a while, but mostly we recognize what a difference good communication and bedside manner mean to dealing with Gabriel’s illness.

Thanks for all your support and continue to pray for our little man on the Journey.  In many ways we have become resigned to the fact that this is and always has been entirely in God’s hands.

Chuck

After almost 3 months of waiting, our trip to Baltimore and John’s Hopkins is right around the corner. We are crossing all of our t’s and dotting our i’s.  All of Gabriel’s records from our hospital have been sent and received  (I made sure they were received!). We are finishing up filing out a great questionnaire the clinic sent us and complying a list of questions. From what I understand we will be meeting with the doctor and talking through what has been done so far and seeing if he has other suggestions/ideas. We are seeing Dr. Eric Kosseff–one of the doctors, who literally helped write THE Book on Ketogenic Diet for treatment of epilepsy.

http://www.amazon.com/Ketogenic-Diets-Treatments-Epilepsy-Disorders/dp/1936303108/ref=sr_1_1?ie=UTF8&qid=1352434899&sr=8-1&keywords=ketogenic+diet

So far we have been very happy with the interactions with Dr. Kosseff, as well as, the clinic staff.  He has answered several emails even before we had an official appointment. I truly don’t know what to expect.  I don’t necessarily feel like we are going to get any clear answers but I am thankful to have an extra set of highly trained eyes on Gabriel’s case.  Since his specialty is the diet, I am expecting suggestions on tweaking things in that area not necessarily drug changes or ideas.  Could be interesting since getting Gabriel to eat anything but pizza and a few snacks has been pretty much impossible lately….well not impossible…but 2 hours to eat a plate of eggs that are the size of equivalent of 6 adults bites. UGH!  🙂

I wanted to share a website that has been invaluable to us….it is because of this family and their commitment to help other families, that we have the ketogetic diet.

http://www.charliefoundation.org/

If you get a minute click on the link and check out the dateline video (it is the 2nd video in the window). It is a great story about the diet how it helps and shows what seizures look like.

I am getting excited to have the trip over with more than anything.  I am literally praying that God will help me slowly but surely get all the details of the trip sorted out.  Thinking through getting all the food ready and prepped for flying, plus making sure the food and the all the medications make it through screenings  are keeping me up at night!  I just keep picturing Chuck and I looking like crazy people in a movie scene.. with one of us plowing through the airport with a stroller loaded up with a helmeted 3 year old and all of our random stuff, while the other one tries to carry the giant carseat. LOL! I am literally laughing thinking about. I wish we were getting to go on vacation instead! but truly grateful to have this opportunity.

SO praying people…here are our prayer requests:

1.  For organized packing  and a safe, easy and calm travels

2.  For clear communication with the doctor. Pray that we will be heard and understand the answers as well as the why behind the answers.

3. For a complete and total end to Gabriel’s seizures.