Tuesday, September 30, 2008

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!

No comments: