OSU vs MI -- the big day!!!

Madison and I watched the BIG game with family and friends....I broke down the night before and had to buy her a OSU cheerleading outfit....she was a cute cheerleader....with all of the folks in the house she was the hit of the night...kept giving high 5's.....what a great game to end the season with......GO BUCKS

First Snowfall

We woke up to our first snowfall.....everyone was excited including the dogs! Kids couldn't wait to get outside and play in the 1" of snow!!!! Coming out of the gym and putting Maddie in her car seat, I turn around to look for Zachary and for a brief moment I thought I lost him. But it turns out he was "licking" the bumper....I say "yuck" Zach that is dirty....he said Mommy it is white it's not dirty....so I tell him to stick out his tongue and try to catch the flakes instead....oh, to see the world through the eye of a 4 year old....Happy winter to all.

Thank the Lord!

We just recieved word that Madison DOES NOT have Alpers disease.....thank you to all of you who prayed for her......we are now back to not knowing why she is still delayed...So this is what we do know she has global delays, apraxia and delayed mylin but maybe all those issues will clear up in time with the appropriate help!

Madison Update

Hi everyone -- good news....so far these are the test results that have come back.....

blood sugars -- good
liver -- good
febrile seizure plus -- NEGATIVE -- which is good
sleep deprived EEG -- good...lots of twitching activity but NORMAL....apparently due to Madison low tone...and the fact that she works so hard daily her muscles will twitch more than normal
MRI -- good....and CONFIRMED that she does have delayed mylination....so 3rd opinion is a charm....waiting on the other mitchocondria blood work to return....to include the ALPERs test....
We are both hoping that that too will come back normal/negative....we truly believe the seizures just threw her little body into a tizzy...and with the proper early intervention...to include more speech...she will develop on that "normal" route...
We also just got a phone call (2 days ago) that she does qualify for the Kauffman method...so I am driving to MI next week for that evaluation...a bit of money out of our pocket...but if it helps Madison to speak then it is all worth it!
A BIG THANK YOU TO EVERYONE WHO CONTINUES TO PRAY FOR MADISON!

Halloween Fun

The night was warm for the end of October -- layers all around. I lit the pumpkins, got the candy out and dressed up the munchkins. Zachary was our spiderman (for the 2nd year in a row), Madison was the cutest lady bug around and Ash was a football player (got ready at a friend's house, didn't get pictures). We promptly left the house at 6pm and went to about 20 houses before the cold set in. By the time Daddy got home the kids were freezin' and ready to eat their candy. So Mike took Madison to four more houses and we called it a night!

October 21 -- Madison Update with Neurology

Hi everyone -- our neurology appoint with the head of Cincinnati Children's hospital was moved up from January to yesterday. We were there close to 4 hours. We like the Dr's bedside manner and he was well informed. He doesn't believe that Madison has the febrile seizure PLUS syndrome (but we will have a blood test done). So we are now going to do an sleep deprived EEG, have an MRI with dye (more more advanced technology) conducted, lots of bloodwork done (they took 7 vials from her yesterday -- she was a trooper)....and thinking about putting her on Depakote (eplipsey medication)....if we do that then she will have to be on it for 2 years.....he told us that this medication would prevent her from having febrile seizures....first doc to tell us that....he also mentioned that she may have a mitocondria disease call Alpers (see below)....at the time we thought ok, well it must be better than the PLUS seizures....and you only get so much time with the doctor so we continued down our list of questions. Lastly, he talked about putting her on a ketogenic diet or a modifed Atkins diet....looked into that too and that is so severe....

Then last night when I sat down to research what we talked about I was hit hard with the reality of what Alpers is.....needless to say Mike and I are a bit shell shocked....he is trying really hard to keep me positive.....so once again any prayers you offer up (because I can't right now....I am so angry and sad)....would be great! I will continue to keep u updated.....

Literature/Information
Alpers’ Syndrome is a disease of the brain and liver. There are 3 classical symptoms of Alpers’ Syndrome. These are: 1) seizures that are very difficult to treat and have a focal component, 2) episodic psychomotor regression or dementia (loss of developmental milestones, often associated with common childhood infections), 3) liver disease. The children are born and develop normally for a period of time in virtually every case. Symptoms begin between the first few weeks of life and about 25 years of age. Two-thirds of the cases begin to show symptoms of seizures, or episodic loss of developmental milestones, within the first 2 years of life. The liver disease is often subclinical in the early stages of disease, but can appear at any time as acute liver failure.
Alpers’ Syndrome is a recessive genetic disease with a frequency of about 1:250,000 (it is acutally 1:40,000) live births. Many cases die before an accurate diagnosis is made, so the true frequency is still an estimate.

September Update

Where does the time fly...just wanted to let you all know that we are settling into Dayton....I have painted 5 rooms and have 4 to go! Mike has put down hard wood flooring in the dining room and we have tiled two bathrooms...didn't realize that being a home owner was sooooo much work! But it has been fun to come home and realize that's ours...now will it be ours in 3 years...well that is to be determined.

We have also gone on a Thomas the train ride and went to a PBS Raggs concert....

Ashley is making friends at her school....and trying hard to keep up with six subjects....she went from a block schedule to having all six classes a day...a big transition. She is also playing volleyball for the YMCA....and is having her first game this Sat.....attached a pic of her playing.

Zachary has started preschool and loves it....he is no longer befriending any "little" person wherever we go....so I am happy to see him have some friends....he will be so ready for kindergarten....his class went on a field trip today -- Mike was able to go with him and took some pictures....

Madison turned 2.5 today.....just comparing her baby pictures with the ones I took today...it is amazing how fast they grow....she has therapy 4x a week...plus, the things we do at home with her....she is making great progress again, walking up and down the stairs...and running....I have to get that on video tape. Her speech is still very difficult to understand....highly frustrating for her but we implemented a communication device so that is helping her to get her needs meet easier...there are definitely less temper tantrums....had a 2 hour genetics appointment today....Dr didn't see much need to pursue more blood work...but when I educated him on the febrile seizure PLUS category --http://en.wikipedia.org/wiki/Generalized_epilepsy_with_febrile_seizures_plus he then did 10 minutes of research in his office and decided that Madison exhibited possibly a few of the traits of the disorder but that he need to determine if the labs in the area were skilled enough at looking for this gene....and the expense of the test....I really think we need to pursue the test if only to rule another thing out.....this has been a year of FRUSTRATION.....but I am trying to take it day by day and not get to ahead of myself. Lastly, the neurologist here stated that his pediatric radiologist do not believe that Maddie has any delay in mylination....according to the TWO MRIs taking in Hawaii....so that is hard to swallow....we are doing a 3rd MRI at the end of October and will be getting a 3rd neurologist opinion down at Cincinnati Children's Hospital with the top doc in charge...so hopefully, that sheds some light too!

Mike and I did our first 10K together....we had a lot of fun and realize that when there isn't a end goal in mind the training slacks...so we are talking about doing a 1/2 marathon together....Mike is working in the protocol office...and just got a promotion! He is happy about that....I on the other hand continue to run all 3 children to therapies, school and the gym....keep getting notices about starting up school but can't make myself go there yet....talking about getting a part-time/seasonal job....we will see about that....I have also found two different apraxic> http://www.apraxia-kids.org/ groups in the local area so that has been nice....I am also going to attend a apraxia conference in Grand Rapids in a couple of weeks so I am hoping to get more educated....lastly, due to the lack of references out there on this subject; I feel like it is what autism was 10 years ago....I have started to write some children's books....so any of you out there who have any knowledge on the subject and would like to offer some insight, I would appreciate it!