Monday, April 25, 2011

Different...but the same

So, we're home now from St. Louis. Exhausted, but home. We did come away with some helpful information, and have already made changes to Olivia's treatments. They are saying that her seizures are officially infantile spasms (which is a really gnarly kind of seizure in very small kids). It, of course, fits Olivia to a "T", but its the first time anyone has really called it that. Its a horrible seizure disorder that leaves most kids very cognitively and developmentally delayed. Sometimes, if you find a medicine that works well you can really increase the chances that your child will develop close to "normal". That being said, we know statistically that since Olivia has been through three anticonvulsants that haven't totally taken away the seizures that our chance of finding one that does now is really low. The Ketogenic diet is a diet used for seizure control as well and has some success with a lot of kids where medicine doesn't work. This is a goal of ours, but we have to get her off one of her medicines in order to do that. It will be a long process. We, of course, will always hold out hope.

Really, more than anything, this weekend has showed Brian and I what an amazing daughter we have. She honestly never gives up. I think I would have by now. Her EEG shows she is not just having seizures throughout the day with normal brain waves in between. She is constantly having epileptic activity all the time. Its like background static that never goes away. How is she even able to do the things she can do now? I have no idea except the grace of God and the resilience He has given her. You can pray for resilience for me--there are days I want to give up. Not many, but after a busy weekend filled with travel and hospital and a busy Easter Sunday this morning feels like a good day to give up. Its Monday. Its dark and rainy. Its almost 9am and I am the only one up in our house. Instead of giving up, I will take refuge in the only one who can truly give it and pray for grace just for the next hour. Sometimes that's as far as I can get.

Thank the Lord that a big shot of grace is coming tonight, weather permitting. My beautiful mother is coming in town with her cape flowing behind her. She is coming to save my day-- at least until Wednesday. What should we do? Nap or shop...nap or shop...I can't decide. Maybe both.

Here is a pic from St. Louis while we were waiting to be discharged. Brian is probably trying to figure out a game-saving play on words with friends because I whipped his tail. This is the benefit of writing on the blog, honey. You can say whatever you want and no one knows the difference. :)

Thursday, April 21, 2011

A bunch of letters you might not understand...


Yes, we are currently in St. Louis for Livi's most recent workup of neurological information. Since 8am this morning she has been having an EEG and that will be done tomorrow morning. EEG stands for Electroencephalography. What essentially happens is they put these electrode things on her head with some super duper bad smelling glue stuff, wrap her head in gauze and tape to keep it on, and at the other end of the wires that attach to the electrodes there is some contraption that sends all of her brain waves to a computer room across the hall from our room. Make sense? Thought is a picture. I call it EEG ponytail...

All those wires are attached to this thing in that blue backpack that transmits the brainwave information. They also are constantly video monitoring the room--yes, I've thought about all the inappropriate things that could be caught on tape, but I figure we can't be the weirdest people who have ever stayed here. I'm sure there are stories.

She has had an EEG several times before, but not in over a year and never over night. Usually they just run them in a lab for an hour or so. The waves can tell them where in the brain the seizures are coming from and sometimes why they are happening. Sometimes they won't tell you much at all. Just depends.

Tomorrow after they let us take the electrodes off we will try to wash all that goopy glue out with shampoo they will put an IV in her and take her to a lab downstairs where they will do both an MRI and an LP before they bring her back up to the room.

MRI is pretty common acronym. It stands for Magnetic resonance imaging. You can do an MRI of basically any part of the body. They will, of course, be imaging Olivia's brain. It takes lots of pictures in cross-sections and allows them to look for lesions, tumors, structural abnormalities. Last time she had an MRI she had no abnormalities, but it could always change, and the parts of the brain are so fluid that one person could read something on the MRI that another doesn't. This could show us where the seizures are coming from (if there is a tumor or something) or what part of the brain is affected (if there is some affected tissue because of loss of blood or something). I'm not a doctor, so don't quote me on all that, but from what I understand that's kind of close.

The MRI lasts about an hour or so, depending. For both the MRI and the LP Olivia will be sedated because she will need to lay completely still for both. We are a tiny bit concerned about that simply because sometimes, when she was much younger and sicker, Olivia would need help breathing while under sedation. They will give her oxygen if she needs it and she should be fine.

The LP might be better known to you as a spinal tap. The LP will look for things in the brain and spinal cord that the MRI can't--the information in her fluid. If she is lacking certain cells or has abnormal ones that can affect how information is processed and exchanged in the brain. They are specifically looking for a vitamin deficiency (B6) which can be known to cause epileptic seizures. Right now she is on a dose of extra B6 just in case because it can't harm her any. If there is a deficiency, they should be able to give her an extra big dose and rid us of the seizures. Wish it would be that easy!

When she is done with all that she will come back up to her room to wake up with us and we can leave. We are planning to stay one more night here in St. Louis in a hotel room since we don't know how long it will take for her to wake up. We could all use some rest before we head home. Hope you enjoyed your science lesson. Here is a picture of Brian and Olivia today...

Tuesday, April 19, 2011

Trolley Run Survivors!

So, we did it! Last Sunday we ran/walked the 4 miles of the Trolley Run. It was a beautiful day--cool and sunny. Shout out to Brian, my mom, and Allen, my brother-in-law for running the entire thing. We are so proud of you! The rest of us were lazy and walked. It was crazy busy all morning there and I heard there was a new record of runners-- 11,000 some odd. Way to go CCVI and thank you Kansas City! Here are some pics from Sunday.

Also thought I would post a video of Livi kill'n it on the piano--her new favorite toy. Thanks Nana for such an awesome birthday present!

Saturday, April 16, 2011

Some recent entertainment

Well, the KidWalk finally came! We are so excied and had hoped to use it for the Trolley Run tomorrow, but its just so new for Olivia the way it positions her body she is still getting used to it little by little. We won't feel like a 4 mile walk is the way to break it in.

This picture is from her and I "practicing" this morning. I was practicing putting her in it without pissing her off and she was practicing standing and walking. She is not yet walking independently in it, but we'll get there. She was enjoying looking out the porch doors--grandma says she is waiting for them to get here.

Livi had a good morning today and a good night tonight, but the afternoon was more napping and more seizures than a usual day. Thats ok. Apparently thats why we keep Tugger, our 4yr old boxer around--to entertain us while the kid sleeps. Brian thought it would be funny to play sounds on his phone to see what Tugger would do. There are no words...

Tuesday, April 12, 2011

Life lessons for mommy

So, my daughter has really changed a lot since she turned 2. I know it doesn't make any sense, but hear me out...

  • She is actually sleeping less. 1 nap a day max 4 hrs.
  • She is not content just relaxing any more. She is making purposeful movements with her hands and fingers to try and manipulate toys or whatever is striking her interest.
  • She is holding her head up ALL the time without letting it lag backwards. Up til 2 weeks ago she would let her head lag back all the way if she was tired.
We have so much to be thankful for in the past few weeks. Watching her change and develop is wonderful, but part of it is also hard. Sure it was difficult to see her make no intentional movements, but I think we got used to it. Now, it is so hard to watch her try to do things that her body is not letting her do. She is learning how to control her appendages but it is taxing because the seizures have confused her brain about how to move the rest of her body. Its painful for me to watch her struggle and get frustrated when she can't tell me what she wants or can't get it for herself. Its in those times she looks the most "disabled" and I'm ashamed to admit that is difficult for me.

The only feeling overriding that one is the pride I feel that she never, ever gives up. Monday in her vision therapy session she worked for 30 minutes to pick up and put down this light stick. It took sometimes up to 2 minutes for each part of the action, but she did it. I'll have to say I think I gave up before she did. My patience was tried and I kept waiting and waiting, fighting the urge to do it for her. But she proved me wrong. She can do it, she just needs some patience and support from me. Monday night we went on a family date to dinner and Livi sat in her chair at the table with us. I laid some toys out on the off chance she might want to play. Play she did. Pick up things, put them down, move slowly to touch it with the opposite hand, put it down, find it again, pick it back up. There was a lot of that. This picture is me holding the toy, but she wanted it back--you can tell.

Wednesday, April 6, 2011

New "firsts"

First of all, I should probably apologize for the lack of effort on my part to download the new Blogger stuff which allows putting these pictures up much much easier. Also, it helps when you're not too lazy to download them instead of just "dragging" them to the desktop. So, this is me apologizing. I hope these pictures turn out better. This is what Olivia and I did this morning. It was her "first" not mine, just to clarify that point. These are in order of mommy being more and more confident in my kid's strength and ability. They range from weenie to "doesn't my kid rock?"

Also, please excuse my hair in that picture. I didn't wash it this morning because my friend Ang and her kids and us went walking. And it was windy. You get the picture. Literally. Windy, greasy hair. Ick.

I am trying not to look worried in that picture, but Olivia can feel it, I guess. She looks a little concerned.

Kill'n it! Actually, what you can't see is the three jackets I have stuffed behind her tush to keep her from sliding. But she did hold herself up there for a few minutes. I was SO very proud.

Its easy to let our fear of seizures (which could have either gotten or close to or completely toppled her out of the swing) control the things we do in life. I am learning that being wise and being afraid are not the same things. I can trust the Lord, and my daughter, without trying to navigate every situation perfectly. We WILL be going to park more often, including the little 2 ft pool they have at this one. Bet you can't wait to see me with this hair in a swimming suit!

Monday, April 4, 2011

The BIG 2!!!!

No, not the last 2 NCAA basketball teams that play in the championship tonight, though we will be watching that with some friends. I can't believe I'm saying this, but: Olivia turned 2 yesterday! Can you believe it? We had a party for her with some friends on Saturday and had a wonderful time! I, of course, took very minimal pictures, but managed these few.
What better way to show your 2 year old attitude, Olivia, than to wake up from your nap an hour early so you are cranky and tired when 25 people show up to celebrate your life?

This is Olivia and her friend Jude. Jude was born premature and has been through a lot too, but is cruising along and doing great! I don't know if he is trying to get at Livi or the cupcake.

And then there was Sunday...a busy day. It was officially her birthday, and we were at church for meetings and stuff from 8:30 to 3. For the last hour and half we convinced our friend to watch her for us during the meeting and Olivia did a terrible thing that resulted in this...

I think she is saying, "Who, me?" Yes you. This is partly my fault. I guess I thought we were past the time when I would have to have adequate extra clothing in the diaper bag. I guess not. This is what was left to wear after she pooped through both the shirt and the pants she was wearing.

Seriously? What are you mad about? I had to clean it up!