Home Alone

Nora and Emma are doing fine with Dad this weekend. First time Alex has the girls solo. I am in NY for Bev's 60th birthday party. Boy was she surprised at the surprise. Happy Birthday!

Nora has been doing very well at school. She is working hard and learning new skills. Hopefully we'll see some pointing and signs in the near future. Her rash is all gone and we are going to try her on the Lamictal again next week. She will hopefully do fine on it so we can get her off of the Zonegran. The Lamictal is better for her cognitive development. The Zonegran somehow delays that. We'll see what happens. Hopefully she can be off all her meds at some point.

Thanks for checking in.

Lori

Lamictal not working

Nora still has chronic diarrhea which gives her a terrible diaper rash. We tested her poop to see if she has some kind of virus but nothing showed up. The only other thing could be her meds. SO we are going to now wean her off of the Lamictal over the next 3 weeks to see if her poo issues get better. If that isn't it, then I guess we start seeing if she is allergic to dairy or some other foods. Grrr..... I am getting frustrated at having to change icky diapers every 20 minutes but poor Nora must feel awful too. I hate having to put her through all this.

Nora had a good first week at school. It was full of long days and some weird nap schedules but she did it. Hopefully it will get easier. Emma had a bit of a rough week too. Alex went to China on Tuesday so she is a bit sad for her daddy. We had a fun dinner date with our friends last night so that was a good thing for all of us! Thanks for the yummy dinner Gretch!

Thanks for checking in!

Lori

Back to school

Nora went back to school today. She gets one on one services M/W from 11:30-1:20. It seems to conflict w/her nap and lunch schedule but hopefully it will work out eventually. She will also go T/Th from 9-10:30 for playgroup. She will receive OT/PT and speech within that time. The teachers who worked with her last year but did not see her over the summer saw tons of improvement in eye contact and motor skills. That was good to hear.

Since I'll have some free time while she's in class, I plan on getting some walks in while she is there to get some exercise. (hopefully)

Emma is adjusting to her new preschool. It's hard to get any information out of her but she seems to like it ok.

Nora's diarrhea/diaper rash is still pretty bad so we went back to the doctors and got some stool sample vials. yummmm... If it turns out that the Lamictal is causing this problem, we'll have to wean her off of it over the next few weeks to see if her poop gets better. Hopefully that is not the case b/c we want her off the Zonegran and on the Lamictal. The nurses at the dr. office also commented on how great Nora looks (not a huge blubber baby anymore) and how well she is walking etc. Also nice to hear.

Alex leaves for a trip to China tomorrow and will be gone for a week. Hopefully, we'll all stick to our schedule and take long naps. And no more trips to the doctor!

Thanks for checking in!

Lori

All pooped out

Poor Nora. She has had a bad case of the poops and now has a nasty diaper rash. We went to the doctor last night to get some "miracle cream" but it won't be ready until tomorrow. Poor girl can't even sit it hurts so much. She's got a very sensitive bottom. I was mainly concerned because her new medication, Lamictal, may cause a serious rash. But this is only in the diaper area and not spreading anywhere else. Phew. We are still increasing her dose every other week so hopefully this rash will go away once her tummy is back to normal.

We also went to a vision therapist today to make sure she is tracking with her eyes and to see if she needed therapy. She is making better eye contact now which is great. Her right eye is weaker than the left which makes sense. She favors her left side for everything-she is left handed and always steps w/her left foot first. This is because her biggest cyst is in the left side of her brain which affects her right side. Very interesting stuff.

Emma started Montessori School yesterday. She will be in school M-F 9:00-1200. We think she liked it. She wouldn't really tell us much of what she did. This is so opposite from the last 2 years. I worked in her class once a week at the co-op so I knew all the kids, parents and teachers. Now I am just a mom. And I don't even walk her into school, we drop them off and pick them up at the playground and the staff take them in and out of the car for you. Drive-thru school!!!!

Nora starts Sept. 17th. She goes M-Th for 2 hours a day. I will be a very busy chauffeur for the next 9 months. Hopefully that will be all we need to do for Nora, no extra therapies or anything. She really is developing and making wonderful progress. I know she is still pretty far behind in speech development but hopefully that will also come as easily as the physical side.

Thanks for checking in!

Lori