Friday, March 16, 2012

Getting settled in. FW, part 2.

The first night was really rough. Luckily, we started the night off with visitors, but then we had to get down to business.

Ella was off all seizure meds so she had a really hard time falling asleep…understatement. She didn't go to sleep the whole night. She ended up having a seizure at 7am, slept for about an hour and then had another one at 9am…and that was our night. We stayed up the whole night. We had both been awake 24 hours by the time Joe arrived at 10am to relieve me of my shift. I went home and slept, while my in-laws took the boys around Ft. Worth and my mom headed to us to help out.

(Ella NOT falling asleep)

(mommy and Ella watching Downton Abbey around midnight)

Thursday, March 15, 2012

Getting set up. FW, part 1

It's 12:44 AM and I'm sitting in a recliner in a hospital room. Seem's I've written a lot of posts from hospital rooms in the past 6 years. Yes, you read that correctly, six year ago I was pregnant with Ella. It's amazing how muchhas changed since that time. I had no idea what we would go through with the baby, or that I'd be sitting here, again, watching her hooked up to machines. As it gets closer to her birthday, I'm reminded of how faithful God has been to us over the years. It might not look like He was faithful, I mean…we have a severely handicapped child, but OH the ways he has been faithful is almost to numerous to count…maybe I'll do that in my next post.

For now, we sit in the hospital. I will say that it's kind of nice to have a change of scenery. We areat Cook Children's Hospital in Ft. Worth and I've loved the experience so far. The hospital and the staff have been wonderful. We have never spent much time in a 100% children's hospital…but it's pretty much amazing.

As I sit in my recliner (which I now realize is broken and can't lay back, ugh) I stare at my mother asleep on the guest bed and my daughter asleep in her hospital bed…and I'm thankful for 3 generations of women in one room (Sara, you and Mak are not forgotten, just not here). My mother has the strength and cool-headedness that I so needed this weekend. I mean, she's stayedat the hospital for 14 hours already with me, and is staying the night. She is so helpful, and even her presence is just helpful. I look at Ella, 5-years-old and as I think of my, now, dreams for her…it makes me wonder what my mother dreamt for my life. Probably not for me to have to sit in hospital rooms with my daughter, waiting for her to have seizures, but she sure raised me to be strong enough to handle it.

So, if you aren't on Facebook (or don't keep up through social media, or like to have things better explained) here are the details of what has gone on this week: (okay, there may not be manydetails, but there is some information)

We had decided to go ahead with Dr. #2's testing suggestions. We arrived around 11:00 AM on Tuesday. The first person we ran into was our old speech therapist, Sara, whom we have loved and missed dearly since she came on staff at Cook, it was such a blessing to see a familiar face!! We got registered, got to our room, and went through a lot of history and information, then it was time to get down to business…the EEG. Mainly, it reads seizure activity in the brain, but if you want to Google it and research more, feel free.

They glue little wires all over her head so that, hopefully, they can see where the seizure activity is originating from…we are still not sure of the answer.

Tuesday, January 24, 2012

Doctor #3, please come forward

Today was our 2nd Second Opinion. So, our 3rd neurologist to "interview" in 5.5 years. We've had the same neurologist since birth, but wanted to venture out and see if there were some other brain-guys out there that had other opinions…or at least better communication skills. (Don't get me wrong, I actually really LIKE our original neurologist, but we just never felt like we knew exactly what was going on or why he was doing anything. It's actually really sad and hard for me to let go of any doctor that I like…that's a big deal in the world of constant medical care.) So, today was Children's Medical Center (the Plano office) to see what they had to say. I need to take a moment and say that this was the HARDEST office to get into. In fact, dear family friends worked their magic to get us expedited, and it still took (what seemed like) forever. So, we meet with the doctor and he had a totally different approach. (Joe is wonderful and has been taking off work to do all of this with me…pretty sure we are going to burn through all of his vacation the first half of this year just for medical appointments…still a lot to do in the next few months!) As you can see I took all of my notes and reports and labs and more notes (these are just her neurological files…or things that relate to neuro, the girl needs an officeassistant! Luckily, we have JoBeth!) Dr. K lets us tell him the whole history and then reads some reports and gives us his take. He's very well spoken and explains things well. With each doctor we are learning more and more as they each have a different style and way of explaining…actually very helpful. After a lot of discussion on what we've seen and done already, he suggests that we go the route of the Ketogenic Diet, which has been known to slow down or stop the advance of seizures. We've heard about the diet before, but never gone into as much detail as we did today. We will meet with a nutrionist at Children's who specializes in the diet for children, andwill answer all of our concerns and questions. We aren't even sure how it will work for Ella since she has an odd eating pattern and can't chew and consume her food like a typical person. Then we will have a very extensive blood test done (complete with metabolic testing) to make sure that her body is capable and safe to be put through ketosis. It's really hard on a lot of the body and is even started in the hospital for 3-4 days before you can go home on the regimen. Then there are once a week appointments, which then get further apart, but with daily monitoring and testing. This can go on for 2-3 years, or longer, if the treatment works.
So….that's one option. We still have the option from Cook Children's to do the testing and check to see if we are a candidate for epilepsy surgery.

We have decided to check into both routes. We will begin the education and testing for the diet to see if it's something we can even do for her. Then in March (Spring Break), we will check into Cook Children's for a 4-day EEG and PET/MRI scans to see what exactly is going on with her brain when the seizures happen. We feel like doing both is our best way to collect all the information we need to make the best decision. If she qualifies for the diet then we will most likely go that direction first and then follow up with looking into surgery if the diet doesn't seem to be curbing the seizures.

Currently we haven't had a full seizure since last Thursday, 5 days, and we'd like to go back to only expecting 1 every 4-6 weeks. Then we'll have some time to make some good, educated, decisions.

Thank you for all your prayers!!

Monday, January 16, 2012

Seizures, and a new Doctor

So, I quit writing on the blog because it was exhausting. So much emotion to write out what I was already living every day. I'm not sure I can write it out anymore, but since we've enlarged the Seizure chapter of our lives, I think it's easiest to write it all here, rather than try to piece it together on Facebook or over phone calls. As you may know, Ella has had seizures since just before her 3rd birthday. We have been managing them with medications, but they have started to get out of control. In 2009 she had 3 seizures, that we attributed to infections and just thought that whenever she would get sick she would have them. In 2010 we realized that they could happen without a fever or infection…and her meds increased. In 2011 we started off with an additional med…and another spike in seizure activity. She was averaging once a month…until December. Between 12/12/11-1/11/12 (4 weeks) she had 6 seizures. We have had the same neurologist since NICU and have decide to go outside the Medical City offices to find an actual Epileptologist (specializes in epilepsy, instead of just neurology). We found an amazing doctor at Cook Children's Hospital…yeah, we have to pass Medical City and Children's Medical to GET to Cook's, but it was the first place we could get in and the doctor was so wonderful. Here are some of the points from the appointment today (these are going to be scattered and may not be in sequence…but here they are):
  • her seizures will most likely be lifelong
  • he would like to switch us off of the 3 current medications (Trileptal, Keppra, and Vimpat) she takes and put her on only one (Clobazam/Ofni)
  • Ella may be a candidate for surgery (a brain surgery to remove the parts of her brain where the seizure originate)
  • the actual part of her brain where the seizures start is between the damaged/dead brain tissue and the healthy tissue…don't ask me what it's called because I can't repeat it…started with a "g"…I'll research it
  • He said her seizures are more than likely a result of the original brain damage caused by her meningitis at birth…it's amazing how much the illness at 12 hours old has effected every aspect of our lives.
  • We were pleased that he seemed surprised that the seizures took so long to surface after the NICU…we were given a gift that he dubbed a "honeymoon period" that we didn't even know was a gift of a seizure-free period of life. (find blessings in small things)
  • there is no plan to actually CURE her epilepsy, the plan is always to manage the seizures
  • Dr. Malik thinks that she might be having small seizures during the day that we aren't aware of…but testing will confirm this and it's not something we can deal with till we have the test results
  • The plan is to do a 3-5 day EEG (yeah, in FW…this is one of the most exhausting things for my brain right now), a PET-scan, and some other scans…more as he sees needed. They will have her off all of her meds so a seizure will most likely happen, which we need to see exactly what her brain does. Out of the 5-10 EEGs she has had in the last 5.5 years, I think this one might actually tell us something! (I may need my own brain doctor after being in a hospital for that long with her hooked up to cords…but I can't worry about tomorrow)
  • There is also the option of some seizure diets, but we'll get there after the tests as well…if surgery doesn't look like the best option.
  • He believes that the meds are lessening the intensity of the seizures, but the concern is that they are ramping up in number and frequency.
  • I'm most excited about going from 3 meds to 1…they don't prevent the episodes, but decreasing the intensity would be nice.
I think that's all I can think of at the moment. I'll update you as we find out more. I guess I'm back to blogging…we'll see. Please feel free to ask questions…or just help us think of more questions that we haven't asked yet!!

A Few Updated Pictures

Ella has been doing great in Kindergarten this year. We are so proud of her and know that she has lovedgoing full days. We started her in a public school, but at the Christmas break switched her to a private school, Chase's Place and have LOVED it so far.

Will has shocked us by his absorption of
everything. He learns VERY quickly and loves to know about everything. He can count to 100, knows all of his letters and what they sound like and what begins with them. Questions are of no shortage with our giant 3-year-old. When he turns 4 in a few weeks we'll get to find out exactly where he is on the charts. He thinks he's a great comic and tries to do anything to make us laugh…which of course, makes us laugh.

Jonathan is already 17-months-old and tries to do EVERYTHING his older brother does. Fortunately he has a very hard head and a high tolerance for pain…so he just bounces around happily behind Will. He is by far our most active, because there is always someone to show him what he could do if he was just a little bigger. He loves Ella. Her name was his first word and he always looks for her and announces her presence. If you ask him to kiss or hug her he never denies her some love…she's the only one he consistently loves on. It's heart warming. He may be quick on the physical development, but he's slow to speak. Besides "Ella", "no", "bubba" (Will), "dada" and "papa"…he's slow to say much else. I'm guessing he'll pick up on more as soon as he slows down enough to care.