Update on Andrew
January is National Birth Defects Prevention Month
Jan 2005
We are all sick off all the snow New England has been getting and can't wait for spring already :)
Feb 2005Feb 14, Boy am I upset right now! The beginning of the month I went to my local library and they had latex balloons as a display. I told her about Andrew's latex allergy and asked her to remove the balloons. I was just there today and they still have the display of latex balloons up GRRR. I'm now writing to them and sending them latex allergy information, hope this helps them, wish me luck!
Feb 25, OMG the library STILL has those latex balloons up! Didn't they read the latex allergy report I gave them??? Or dot hey NOT care?
Is anyone having problems with public places usign latex balloons? E-mail me about this, I want to read what others have to say about this matter.
March 2005
Andrew will get MORE Botox May 3rd, 2005. His right ankle and both hamstrings are real tight again. He also got a totally different knee brace to wear at night and was casted for new SMO's, that we will pick up April 4th.
More on Library: nothing is being done, we have no choice but to contact the disability commission of my state to ask them for their help on this. They do not get "it", they don't understand that they ARE discriminating against him!! LATEX ALLERGY is a disability!! I will keep you all posted.
April 2005
Andrew got his new SMO's, not too happy with the way the straps were put on but we can live with them for now I guess.
May 2005
May 3rd, Andrew got Botox again (3rd time) we hope they work as well as the last 2 times. He will start private PT next Monday 2 times a week for an hour for the next 3 months.
UPDATE: Remember my battle with my local public library and the latex balloons? Well as of May 11th and after my husband going to every monthly library board meeting to talk to them about them having a latex policy set up they FINALLY adopted a latex balloon and glove free policy!! But not b/c they UNDERSTAND the latex! YAY a 3 month battle over something so simple that should have not been such a problem is now over. Now Andrew can go there every week like he had been doing since he learned to read in kindergarten. He is happy to be able to be involved in the summer reading program that he was attending for the past 5 years. I will post the 2 news articles here for you to read, someone called the paper (we all know it wasn't us!! I wonder who wanted to spin it their way?) Thank you for all the calls and e-mails of support on this matter.
June 2005
Andrew returned to our library and for the first time since our problem with them wanting to use latex balloons there. He took out 2 Goosebumps books and a few videos for him and Shane to watch. Many might not see this as a big deal but to us it means we won over discrimination!
Sept 2005
Andrew started school Aug 30th, he was so happy to be back! He also had an apt with Dr Nimec (Botox follow up) and though she is happy in his progress, she feels since he has grown 4 inches since Feb that re-doing the Botox in Oct will help to keep his right leg straighter, (his hamstring is getting tight again) so more Botox Oct 27th. I'll update then.
Sept 30th, Andrew seen Dr. Gertner in Endocrinology to see if Andrew is in pre-puberty. He had a hand x-ray (which shows bone age), his was at 11.5 it only showed about 7 months older then he really is and his blood testing showed normal levels. But he thought that Andrew would benefit from having monthly hormone shots of Lupron for about 2 years.
Oct 2005
Andrew had Botox re-done Oct 27th, 3 days before he turns 10! It went well but it's still early to tell how well it will work. PT will start in a week and last for the next 2 months.
My husband Patrick went to our town's School Committee meeting this month to ask them to adopt a allergy policy. This policy was taken from the Mass Dept of Ed guidelines and involves setting policies on how to first prevent or if needed respond to children with life threatening allergies. We needed them to know that we wanted a latex-safe middle school for Andrew to attend next fall and that our youngest child who will attend the Elementary school has a life threatening food allergies as well. Here are a couple of news paper articles that were written about these meetings. I have copied them in whole with permission.
Nov 2005
Andrew had had his eyes tested and needs glasses, we will get them in a bout 3 weeks.
Andrew also got fitted for a back brace but it will take about 4-6 weeks to come in. It's to keep his scoliosis from getting worse.
Dec 2005
My husband Patrick is still working on getting a allergy policy in place for our schools. I would like to thank everyone who e-mailed us with their support on this matter. Patrick asked to be on the special committee to help develop this allergy policy for our town. They will start Jan 2006.
Andrew starting being tested for learning disabilities at Children's Hospital (Dec 8th-Dec 15) Neuropsychology -all day appts. We will get the the finding sometime in Jan 2006. These findings will be use to get help for Andrew at school.
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