Wii live the life

Been a while. I have been doing the Christmas, Eating, Playing, Sorting/Cleaning and Sleeping thing.  I crashed the day after Christmas and made it out the door tonight in search of Wii gear and new winter boots at LL Bean. After I remembered that my own car is not working. Totally forgot it stopped working on Christmas Day. (Who does that? Forgets that their car does not work???)  Guess I better get on that.

I went to BJ's first and as I was paying, promptly realized I forgot my Debit card. Par for course for me. Do you see a trend here? I don't get upset or annoyed at these things because this is part of my daily life. I lose my keys, wallet, phone etc.. on a daily basis and know that everything will work out at some point.  I went back home after getting nothing done at BJ's, got it and went to Walmart instead to get more Wii remotes and nunchucks since we are now a Wii owning family. The kids are just wild about it and are the PERFECT ages.  They are happy with just the Wii Sports Resort games. I can't imagine what they are going to do when they figure out there are hundreds more. Just Dance 2 comes in the mail tomorrow and I personally can't wait for that. (The reason another remote HAD to be purchased)  Now we just need rechargeable batteries and a charger because they have been going through a set a day.  I normally would not allow so much gaming time, but it is Christmas and pretty darn cold out there. If I make Kailyn go out when it is too cold she won't go out for the rest of the winter.  Sam on the other hand, went outside with just his boots on and his jacket unzipped.  Had to wrangle him back inside before he got blown away.

Keira is doing well. I hesitate to say that she has not had a seizure in 3 weeks.  The last time I said that she had them the next day, but I will say it again because she had them with a fever of 103.9. Not sure why they have stopped (hopefully they really were benign), but we did slowly titrate her off of the meds. She is not on anything as of 3 days ago. We hate the thought of the major heavy duty meds in her system and will do Ketogenic if it happens again.  She has had MAJOR improvements. She is not the same child she was just a little over 2 months ago. That child was frail and basically just stayed in one place. She now moves really fast and gets into everything. Loves trying to get in on what Kailyn and Sam are doing.  She is still behind in gross motor and feeding areas, but her receptive and expressive language is right where it should be and the other two are coming along.  She still gets all of her nutrition from the feeding tube. We have to see a GI, Nutritionist, Feeding Team and have an upper GI done.  Then the Feeding team and her Speech Therapist will help her learn how to eat and drink again. She would be happy with us just feeding her through the tube for the rest of her life though. ;)  We go to the GI tomorrow and the Upper GI on Thursday.  We have never seen a GI in Maine, ironically. Only in Boston when they said she needed the feeding tube STAT.  Not sure what the GI will do except take our $20 co payment and refer us to the Nutritionist, who will then see us, take our $20 co payment and refer us to the feeding team.  Thank goodness we don't pay for the Speech Therapy and Physical Therapy.(They are both awesome BTW)

Kailyn is doing well too. I have no idea where her numbers are at, but they seem to be around the range they should be. I also have NO idea when her next appointment is. I think it is around now. I should probably call about that. It is very hard to manage the medical needs of two children. I try my best, but right now I feel like Kailyn is getting the short end of the stick. There is only so much you can think about in one day and changing her insert and making sure she is not high or low all the time is all I can handle.  There is a lot to Type 1 Diabetes management care that people do not realize.  Luckily, she is old enough to do a lot on her own. We just need to double check, but she can't adjust the pump. Only the Diabetes center and I can do that.

Sam is Sam. Happy go lucky unless it's bedtime or he is extremely overtired. (Then watch out)  He is confused about this whole vacation thing, but does not seem to mind. Numbers and days are hard for him to grasp.  His strong point is definitely reading.  He wrote me a lovely note that said. Sam Loves Mommy Santa! :)  We plan to go to a movie and out to eat one day and will put the Wii to good use the rest of vaca. Daddy only works 2 days this week and since my car does not work he really is not working a full day tomorrow. He has to take us to the GI. Not sure what we are doing New Years, but I prefer to not make plans because they never work out. lol  Just winging it!! :)