Back at work and on the blog

This update is even more overdue than the last one. I have already finished my maternity leave and started work on 1 September. Leo will be 6 months old tomorrow. Crazy how time flies. The last few months have been fantastic and so different to my maternity leave with Bella which was spent mostly in hospital and in Doctor’s rooms. It was wonderful to just enjoy a healthy baby and as a result I spent very little time blogging but only managed to keep up with the blogs I follow.

While I was on maternity leave I also started my own business. I opened up an exclusive children’s toy shop called Chasing Fireflies. I have employed someone to run the store for me while I am at work so my day to day involvement is now just on the buying and accounting.

We have had lots of news and development with Bella since I last updated. We had been slowly weaning Bella off her Tegretol and took her for an overnight EEG in May. Unfortunately it showed some epileptic form activity in her right temporal lobe. All her EEG’s for the last few years have been normal so this was quite upsetting. Her Neurologist decided to increase her Keppra and to do another EEG in June. The EEG in June was much better thank goodness. It still showed some “abnormal” activity but not epileptic activity in the right temporal lobe. Her Neurologist increased the Keppra a bit more and we did another EEG in August. In the meantime her Neurologist thought she may have a focus on her brain. The EEG in August was done by another Neurologist (for a second opinion) and again showed “abnormal” activity but this time in the central temporal lobe which he said meant she does not have a focus but rather a generalised epilepsy. He said the “abnormal” activity does not need to be treated and we should stay on the current dosage of Keppra and Tegretol. He felt that she may have a Channel Disorder but they only way to do this would be via genetic micro array analyses. These are not available in South Africa so we would need to find an overseas research laboratory who would be willing to do it for us. Is it worth it? I don’t know!

In the meantime we have been carrying on with the Yasko protocol. We went on holiday to Mauritius in August so I decided to give her a break from most of her supplements and just kept a few of the key ones on board. I don’t know if it was coincidence but she seemed much better with no signs of detox and now seems to be doing better in terms of understanding and getting glowing reports from her therapists. She is more focussed and her understanding of her environment seems much better. I am now in a dilemma as to whether push the Yasko protocol again, because in theory the more detox the better her future development, or to give her a break and let her consolidate with this current developmental spurt. Any ideas or thought from anyone especially anyone who knows the Yasko protocol?

Leo and Max are both doing very well. Max is besotted with his little brother and takes every opportunity to cuddle him and love him. It is very special to see. I have just loved seeing Leo develop and grow, although it has sometime saddened me to see how easy some things are for him compared to Bella. I try not to compare but it is difficult not to.

I tried to post a picture of Leo here but am having problems with blogger so will try again next time.

The 8th of July again

Last year on the 8th of July I wrote this post : 8th of July 2009

Its that time of year again and in line with true Bella style it will be another auspicious day. We are going into Sandton Clinic for a 12 hour overnight EEG. The purpose of the EEG is to see how Bella is doing and if all is good to possibly start weaning either her Tegretol or Keppra. The weird thing is that it was the 8th of July 2008 that her seizures stopped and we will be in the exact same hospital room as we were then. I am taking it as a good omen but am still quite freaked out about the thought of a trip down memory lane....

Last year Bella sat up from lying down for the first and when I look back to that milestone and where she is now I see how far she has come in the last year. It really is amazing.

My thoughts are of course on little Ruve and her family and hopeful for what the next year brings.

January 2010 - Full steam ahead

Its only the 12 January and it has been a hectic month already...

We went to see the DAN practioner on Wednesday last week and she has put Bella on GFCF diet and a whole range of supplements. We are sending some tests off overseas to confirm what she saw in Bella's live blood analysis. One of the tests required her hair to be sent to the lab so I had to cut off a huge patch of hair at the back of her head which looked so silly with the long curls on top of Bella's head. In the end we had to cut most of her much shorter which is quite upsetting because I was enjoying 'styling' her curls with pretty clips etc. Anyway, small things..... We started Bella on the new diet regime and she is definitely sleeping better and seems a lot brighter and doing a lot more exploring around the house. Its hard to pinpoint it to the diet because she has also finished the Phenobarb completely. I would love to chat to some Moms who have done the whole GFCF thing.

We went back to the Opthalamologist for a check up because I had noticed Bella seems to have a squint developing. The eye doc was very happy with improvement in her vision since October 2008 (when she now tells me Bella couldn't see anything). She said that her vision is perfect and that the squint is quite common and she thinks unrelated to Bella's other problems. It will either go away or she will need glasses or eye surgery. We have to go back in April to see what has happened. I discussed this with Bella's OT and she has recommended some eye exercises to strengthen her eye muslces if it is just due to eye muscle weakness. It is quite possible so because it is an intermittent squint which happend randomly in both eyes.

Bella had her check-up EEG yesterday which was supposed to be a 2 hour sleeping EEG. I didn't sedate because she normally doesnt react well but instead decided to time it over a sleep time. Needless to say Bella thought it would be way more fun to pull the cords of her head and try to climb out of her pram.

After her EEG cut off the offending glue with the extra long curls to try and turn her bad hair day into a good hair day..

We should get the results of the now 20 minute EEG this week before we leave for New York this Saturday. I can't believe how quickly time has passed and we are off for our second Anat Baniel Method session. I am not sure what I want to come out of this session. Last time I wanted Bella to crawl but I do not want to push the walking yet because she needs to spend a fait bit of time crawling. So I think I am just going to go with the flow...

I am so stressed out about leaving Max. I have had the feeling that he is more prepared for it than last time but as the time draws nearer I can see that he is starting to get stressed :(

The next time I write I will probably be in New York.