SPECIAL REPORT: VERY Exciting News!!!

Olivia has been approved for a grant through the Dravet Syndrome Foundation that will provide her with a Coolsport Cooling Vest and an Emfit movement/seizure monitor!!!! This is a huge, awesome, amazing, wonderful, LIFE-CHANGING gift!! http://www.dravetfoundation.org/pag.html

The Coolsport Vest arrived today and the Emfit Monitor is on its way. The vest is the best one available to help her endure the too-hot temps of summer. Some days are too hot for Olivia to even go outside at all (as the heat is a seizure trigger) and having this vest will allow her more freedom. This vest is not likely to be covered by insurance and costs $130 before shipping. http://www.coolsport.net/index2.html

The Emfit is a monitor for her bed that will detect seizure movements or if she escapes the bed. Olivia is at great risk for SUDEP and nocturnal seizures. This monitor will afford me more peace of mind at night as it will be able to detect and alarm during seizures that I could otherwise sleep through. This monitor is NOT covered by insurance, and it costs at least $600 before shipping.  http://www.emfit.com/en/care/products_care/movement-monitor/ 

Through this amazing grant program, The Dravet Syndrome Foundation is providing these two LIFE-CHANGING items to Olivia, FREE. They are able to provide grants such as this through the generosity of donations acquired either directly or through fundraising events. I strongly encourage you to donate, if at all possible, any amount, because it will go toward helping change the lives of other sweet kiddos like Olivia. There was NO OTHER way we were going to get these items as funds are so limited for us. This is truly a blessing I could never say "Thank you" enough times for.

Please visit The Dravet Syndrome Foundation at http://www.dravetfoundation.org/, to see the amazing things they are doing and how you can join them!!

My heart is SO full of love and gratitude!
-Hilary

Summer, Summer, Summertime! :o/

Summertime temps are definitely here in OKC! Dravet causes Olivia to be extremely heat/light sensitive. Some days/times are better than others, but we are certainly seeing the effects of summer. Just about any time she walks outside, she has a brief seizure. However, she did have one the other evening that was not brief, and we ended up having to call the ambulance. She managed to avoid the hospital, thankfully. She had been playing outside for a little while and was just getting too active--Bam!--I looked away for a second and when I looked back, she was down on the ground seizing. She did play outside yesterday for quite awhile in her baby pool and seemed to do quite well. The only catch was her nap afterwards---it was four hours long! And, it was only interrupted b/c someone rang our doorbell. So, it looks like even if she doesn't obviously seize in the heat/light, it is certainly wearing her out. We are going to continue making the most of the early hours of each day and getting her out while we can.

In other news, it's almost her 2nd birthday!!!! She turns the big TWO on 6/13. We are having a little party here at the house. I waited so late to get things planned that it might just be us here with a cake and some presents, but at least she will LOVE her presents. I can't wait to give them to her. She has a Wish List on Amazon.com, under the email: hray75@yahoo.com.

In order to deal with her increased seizure activity, we have finally increased her medication a bit. She hasn't had an increase since last fall, which is VERY good! But, summer carries such extreme triggers that it is apparent her previous dosage will not safely get her through. So, we started the new dose a few days ago. It usually takes a week or two for the side effects to go away when we do this. In the meantime, she has been quite a handful---more than usual!

I am glad to finally be out of cold/flu season even in spite of the difficulties of summer temps. Olivia still must be very protected from illness (as always--this will never change for the rest of her life), but it has been a great relief that not as many illnesses are swirling around the population. I tell you the cold/flu season will make you a bonifide germa-phobe when you have a compromised child. So, I am glad to get a little break from the extreme anxiety of that issue.

We are absolutely loving our nurse!! She has been an amazing help. The agency is working hard to find us a second nurse, so we can get our full approved hours. Please pray that the right person comes along to fill that position for us.

Well I gotta go. I am SO tired. Olivia got me up at 6:00 this morning. :o/ So, I am already ready to get back in bed!

Much love, -H


****Addendum:  We ended up not going through with the med increase (Keppra), b/c she wasn't getting any obvious benefit from it, yet she was experiencing too many negative side effects. It was decided to go back to her previous dose and just hold steady there.

Okay!!

Our life at this moment is...changing! We completed the nerve-racking process of being approved for home-health nursing. I got the call yesterday from the home health agency that we had been approved. I had been waiting on pins and needles, and I knew I would be emotional when I got the decision (approved or denied) but when she told me we were approved I literally fell to my knees right in the living room and began to weep. I couldn't even hear her talking anymore. I just thanked her and said goodbye. Ha. (I called her a little while later to have her repeat everything she said after "you've been approved!") Olivia wasn't quite sure what was going on. She doesn't really understand emotions other than the happy, loving ones. She generally laughs or just stares if someone gets angry, sad or scared, etc. Although, I do have to say, she is sloooowly starting to develop a bit in this area and that is very exciting for me. She responded to me crying by coming over and patting me on the back and even asked me, "Okay?". She kept switching sides, too. Patting me on one side then walking to my other side and patting me on that side. Then I gathered myself enough to realize I needed to help her process this moment more than I needed to experience the moment. So, I turned to her and smiled big and said happily that Mommy was VERY ok. And, Mommy was crying very happy tears. Then, I added some clapping and Yays, things that tell Olivia it's a happy thing. She immediately smiled great big and threw herself onto me in big, tight hug. So, we sat there hugging and laughing and me still weeping and Olivia still patting me and saying, "Okay!" Yes, Olivia, Mommy is SO very Okay!

And, now with this amazing turn of events, the nursing, Mommy will get to be even more Okay. I can't believe I am not going to have to do this alone anymore. I am in shock. I have had to push my body and mind so far in the past year that I thought surely both would snap, but they did NOT. Praise God, they did NOT. There is so much work to be done with and for Olivia and really tough days ahead. This nursing service seems to be coming at a really perfect time.

My mind is just swimming with all the things going on, but as usual, I can only seem to handle tiny updates at a time. I'm sorry about that!

I do want to ask for some specific prayers for sweet Olivia. She will most likely be having 2 more procedures/surgeries within the next 60 days or even less. Her hearing is still very, very low, so she will almost surely be getting tubes placed in her ears. Right now, she hears everything like she is underwater. Pretty awful and extra awful when you're trying to learn a language, so we will be taking care of that sooner than later. The other issue is far more complex. She suffers from sleep apnea, both obstructive (something literally obstructing the airway and stopping breathing) and central (the brain is "forgetting" to breathe). There is nothing you can do to fix the central apnea, but there are possible fixes to obstructive apnea. That is, IF you know what the obstruction is. Our problem is we don't know what exactly is causing her obstruction. We (the docs and I--not me, myself and I--ha) believe it is ultimately tied to her low muscle tone issue--just like SO many of her other problems. She will need to have an exploratory procedure done where they watch her throat in action while she sleeps. Please pray that all goes smoothly and that we find the proper direction for her care in this matter. Olivia having a compromised airway is a huge source of worry for me.

Well, I did say this was going to be short, didn't I?? I guess I got a second wind or something. :o)

I hope this moment finds each of you doing/feeling well, and I hope you can feel Olivia giving you a virtual pat on the back and hug around the neck.

All my love,
-H

PS  I am waaaay too tired to edit this, so forgive all spelling errors and missing words. Just use your imagination. :o)

Mother's Day!

To my Olivia: Today is Mother's Day, sweet girl, and I am so incredibly lucky to be YOUR mother. I feel that way every single day. I absolutely love it when you give me hugs and pat me on the back while we embrace. I love your sweet little voice, especially when say such words of kindness like "thank you" and "good day!" but extra-specially when you say Mommeeeee! :) I cherish your laugh!! And, you are SO funny. I never knew you would have such a sense of humor so young. You genuinely crack me up. We certainly need our laughs, because it's true, sometimes our days are pretty tough. But, you are tougher; stronger than anyone I've ever known. You have shown me what real strength is. You are teaching me what it means to persevere. 

My dear, sweet Olivia, to be your mother and get to love and guide you every day is the greatest gift I have or ever will be given. I cherish every moment up to this point, and I promise to continue to linger in our hugs and in our bouts of the giggles, because all I have is our life.....at this moment.

All my love forever and ever,

Mommy

Sooooo Sleepy

I reeeeeally want to update the blog, but I am SO sleepy!! Let's see if I can at least get out a few points of interest. Olivia managed to weather the higher temps that plagued her last week without having any emergencies or even big seizures at all. This is very, very good news. I am still trying to get a handle on her allergies again, but at least her high temps have come down. 99+ is the highest I have gotten for several days. This is high for her, but it is still better than almost 102.

Ok....that is all I can manage. I require more coffee to keep from constantly yawning.

-H

We began the home health nursing approval process today, which basically consisted of an initial meeting with the nurse case manager from the home health agency. She was very nice, and I really like the company so far. They are also our medical equipment company and have proven themselves to be incredibly efficient. I had to basically arm the nurse with loads of info about Dravet, our daily life, health history, and all that sort of thing. One of the things that was just running through my mind a moment ago (this is many hours later after the appt and, of course, my brain is still churning--ha), was the line of questions she asked me regarding Olivia's seizure frequency. It has most certainly increased and not surprisingly for the condition as it is progressive. But, the thing that struck me was when she asked if there was ever a day she didn't have a seizure. And, without hesitation, I said, "Oh no. She's never had a day without a seizure. Not since about 9:00p Feb 14, 2010."

...............................WOW............................

As the woman reacted and then made her notes. I just sat there quietly realizing the enormity of what I had just said. My precious Olivia has seized every day--EVERY day--for more than the past year. That's a lot. My guess is her average right now is around 100 a day, but I really don't know. They are way too hard to count. I am awaiting her recent EEG results, and that may give me more of a clue, but then again it's only a snapshot of time. So, all I can say for sure is that I know she is having a whole lot more than she used to, and like I told the nurse--Olivia never gets a day off.

I sure do adore my sweet baby girl. I am SO very proud of her. She is the strongest person I know.

COMING SOON: Updated report on development! Olivia has been doing some fun and exciting things in this area that I can't wait to share with you all!

Here's a little update on things: Olivia has been doing pretty well overall. We still ride the daily Dravet roller coaster of course, but we have only had one EMSA call lately and no hospital trips. So, we call that decent. She seems to have finally kicked the last of the winter illnesses only to have been relentlessly attacked by allergies for weeks now. Even allergies lower her seizure threshold, cause her to run a low grade fever and create such nasal congestion that it would impede her emergency medication. Allergies for pete's sake. I THINK I finally have it under control just as of today actually. Today was the first day I realized I hadn't used a tissue on her repeatedly all day long. Her doctor switched her from Zyrtec (once a day) to Allegra (twice a day) and she still is on her nasal spray, Atrovent (twice a day). I offer the details for any other Dravet mommas who might be dealing with the same issues, so they can know what has worked for us.

Olivia has been having increased daily seizures, which for her means pretty much a grab bag of all her seizure types excluding the generalized tonic/clonics (grand mal). So, she has been keeping me extremely busy for....well, gee, I don't really know how long now. I guess this last intense period has been building all year so far really. Of course, truthfully, Olivia has kept me way too busy ever since she was born!

SPEAKING OF!!! Duty calls......Must cut this update short. I will return with more info as soon as I can. Until then, take care!