Saturday, January 31, 2009

A Little off Topic...

“If we don’t change the direction we are headed, we will end up where we are going.” ~some Chinese dude.

The above quote was suggested by my dearest friend from college, Christian aka the cap’in. Christian has always given me a unique perspective on pretty much everything in my life. Including, but not limited to, getting my eyebrow pierced in college while he simultaneously had his tongue pierced. He has been there for me through break-ups, car accidents, fights with my mother, sister, girlfriends. He was always my date to sorority functions when I didn’t have one! He drove all the way to Arlington when Kamden was born and then back to Waco…in the same day. He’s the only man who could ever get away with calling me “fatty.” One of my only regrets is not going to Greece to visit him that last summer before our senior year. I am certain it would have changed my life! The memories I have with him make me smile when I’m in a funk. Our pictures are hilarious too. Christian and his beautiful wife Erin are expecting their first baby (a boy!) very soon. I know they will make the most amazing parents.
So, thanks Christian, for the profound quote, and all the memories. This is one of my favorite pictures, Kamden still gets a kick out of it. Chick-a-boom!

On a Kendall note, she had a very difficult time going to sleep last night, but once she fell asleep, she slept well. This morning Nonny came over to watch her. I was able to take a long jog in the park with my friend Jill. It was awesome to clear my head and enjoy the nice weather. I feel so much better about everything today. I’m ready to fight these darn seizures with Kendall, I just need to be rejuvenated now and then.

Friday, January 30, 2009

A Change in Course...

"Life is either a daring adventure...or nothing." ~Helen Keller a lot has unraveled in the past 12 hours. I was really struggling with the decision to change Dr.'s. I felt comfortable with Dr. Marks and the facilities, but felt like we needed someone who was going to take this a little more seriously and give us some answers. I went back and forth and changed my mind a hundred times. I became frustrated thinking I had to make decisions regarding seizure medication. (I went to Baylor to be a teacher NOT a Dr....or a mattresses sales rep...but that's a whole other post)Thankfully, I married a man who balances me out. Justin is so level headed. He completely uses reason before emotion when making a decision. He came up with a perfect suggestion and something I would never have thought to do. Why not call Dr. Marks, explain what the other Dr. said, her plan for medication, and get his opinion? Simple enough. We did speak with them, they welcomed the new course of action with the medication and we are also scheduling the video EEG as soon as my insurance approves it. Definitely by Thursday, but possibly tomorrow. Dr. Marks will take a look at the more recent EEG's, come visit Kendall, then talk with us about the furthering the increase. I think that says a lot about him as a Dr. He didn't get all ego'ed out on us...if that makes sense! So we are now staying with Dr. Marks. I feel confident that after the next EEG they will see the pattern, diagnose with Infantile Spasms, and the team of specialists in the EMU can make a plan. We're headed in the right direction. Thanks, Justin.

Kendall had PT this morning. She had 10 really bad seizures while she was here. We love our PT through ECI. She is very different than our PT we see at Cooks once a week. This morning turned into more of a counseling session for me than a therapy session for Kendall, since the seizures wiped her out. We're still waiting for her new glasses. Hopefully we'll get a call that they are ready by the end of the afternoon. One thing at a time!!

Please keep us in your prayers still as we get closer to some answers.

Thursday, January 29, 2009

Infantile Spasms

"When the world says "Give up," Hope whispers, "Try one more time." ~Author Unknown

Well, we just returned from the Neurologist at Children's. It was a very good visit. The Dr. spent about an hour and 45 minutes with us getting our history, etc. To make a long story short...(yeah right!) she didn't say anything different about the structure of Kendall's brain. She said we are doing all that needs to be done; however, the cause is completely unknown. She was a bit more positive when it came to Kendall. Not so much on what she will do or won't do, just in encouraging us to look at what she does and loving her every step of the way. Her bedside manner was waaaaayyyy better than Dr. Marks. Of course, we liked Dr. Marks, but now we are in the throws of making a big decision. More on that in a second...

Looking around the waiting room in any Neurology department is interesting to say the least. Especially when you are there with your baby. I talked myself out of the normal hyperventilating panic attack I usually have in crowded waiting rooms at Children's Hospitals. See... I'm becoming more mature by the minute! There were children with all sorts of issues. Most of them there with parents who look exhausted. (I guess I fall into the same category now.)

Well, after the lovely Dr. listened to me explain our concerns about Infantile Spasms, what we were seeing, how often, time of day...etc...she took a look back at the records of Kendall's first two Video EEGs from Cooks. Remember...the ones where they assured us they were not Infantile Spasms, just normal movements from a baby with an immature nervous system?? Well, she quickly told me there was "evidence of pre-emergent hypsarrythmia" That's the pattern for Infantile Spasms. So, she recommended we come back tomorrow morning for a regular EEG, then schedule the 24 hour video EEG the first of February. She explained the interesting thing about Infantile Spasms is the waves are up and down, but when the seizures actually occur they flatten out(The nurse from Dr. Marks office still hasn't called back.) She then proceeded to tell me we needed to change her medication now. She said there has been proof that Topamax does work, but the treatment needs to be fast and aggressive. (something about kg's / mg's??) So, she sent us home with a plan to end the Klonnapin (since the side effects are out weighing the benefits thus far...drooling, lethargic, and still spasms, etc.) and increase the Topamax a lot. This will end us with 4 15mg capsules in the morning, and 5 15mg capsules at night. (currently we are on 1 15mg capsule in the am and 1 15mg capsule at night) They are going to check her blood work when we go in for the video EEG to find out whether or not she is at risk for kidney stones (one of the side effects) SO... the decision we face is to leave Cooks and Dr. Marks now, and continue with Dr. Cerci, or forget the whole thing and wait for Dr. Marks to schedule the video EEG. I think my decision is made already. Children's is one of the best hospitals. Also, it seems that Dr. Marks doesn't really care too much about the possibility of Infantile Spasms. I think he thinks she already has too many brain abnormalities for it to really matter. This Dr. says we need Kendall to be the best she can be, and the seizures are not helping that. So, I think it was just timing. I'm totally OK with driving the extra distance if it means better care and better Dr's.
It seems we have now turned a new corner in our journey. Please keep us in your prayers as we make the decision to change meds, Dr's, hospitals, etc...
I can usually think through decisions like these pretty well, but since we have to make a decision by tomorrow...I'm frustrated and feel rushed.

Wednesday, January 28, 2009

Our Ripple Effect...

"If you don't like something, change it. If you can't change it, change the way you think about it." ~Mary Engelbreight

Well, as I mentioned a few weeks ago, we find ourselves in the throws of second opinions. Our new Pediatric Ophthamologist said Children's in Dallas has a great Neurology Dept. Our wonderful nurse at our pediatrician's office got all our info over to them so quickly, we were able to score an appointment tomorrow at 11:30. I almost canceled it today after Dr. Marks called back and said he'd viewed the video and thinks we need to schedule another EEG. Since now I feel like they are giving Kendall a bit more attention. I don't know what I expect to hear. I'm almost afraid to hear anything else, though I suspect it will be something similar to what Dr. Marks has told us. Our pediatrician's nurse put it to me this way. "If you get a second opinion, you most likely won't regret it...but if you don't you'll always wonder." So, I guess that is one of the reasons to go. What's one more appointment in our long list of current appointments? We canceled our PT yesterday because of the weather, and were unable to go today either, but Nonna came over and gave Kendall a pretty good workout. She hasn't had a bowel movement since Friday (TMI...I'm sure) but we think it is because of the medicine. One more thing that makes me hate that darn Klonnopin. OOOOOHHHHH! Wait a minute! just as I was typing that Justin started screaming from the living room. It seems the pear juice, prunes, Miralax, and massage must have worked! Thank God!!! Wish us luck tomorrow. We'll keep you posted as always!