We have boys in the Dendy house-wow. The girls wanted a dog and after deciding that we weren't quite ready to take that step, we decided that miniature lop bunnies would be a better bet for us. We found a breeder in the Dallas area who breeds miniature Holland lop bunnies. They are pedigreed from a great line of show Hollands and they are very sweet. We picked a broken blue buck and a solid blue buck. The broken blue is McKay's and she named him Obi after Obi Wan Kenobi (We saw all 6 Star Wars movies on our staycation this summer). Alexa's is the solid blue and she named him Beau after my childhood dog. They are only 6 weeks old and we picked them up from the breeder on Labor Day. We found them two weeks ago, but we couldn't buy them until they were 6wks old. We are hopefully going to be able to litter box train them and keep them in the mudroom in two cages. We will see how it goes.
The girls just started school last week also and man I can't believe that the girls are getting so old. McKay is in 5th grade, Alexa is in 3rd and Grace is starting inclusion in Kindergarten with her PPCD class. This is their last year in the same school together.
This will be a fun year...I am sure we will have lots of adventures.
3 comments:
Hi Jennie,
I just read your blog about your daughter, Grace--it is so beautiful. We also have a special needs child, named Victor. He is three years old, and was diagnosed with Pitt Hopkins Syndrome at 2 1/2. For quite a while his doctors thought he had Angelman syndrome, since he shares so many similarities, however all of the genetic tests were negative for Angelmans. He has a microdeletion on one copy of his 18th chromosome, which was found in March 2008 (after the microarray analysis test was dramatically updated at the end of 2007 to include this area and many others in order to find more deletions.) Victor is doing well, and is such a blessing for our family. We also have 2 older children, 2 girls, 9 and 6. I have a blogspot for Victor: http://victorpauca.blogspot.com/
I would love to be able to correspond with you. I can see so many similarities in our families. If you get a chance, please write to me.
Take care,
Theresa
Hi Jennie,
Thanks for your comment too! Victor has a deletion of a single copy of Chromosome 18q21. Some children with Pitt Hopkins have a deletion in this area, and some have a mutation. The geneticists had ordered a microarray analysis that looks at many areas of all the Chromosomes, and that is how they found this deletion. Victor does have dysphasia, a swallowing disorder, but the doctors seem to think that this was caused by a birth injury with the umbilical cord wrapped very tightly around his neck--he had bilateral vocal cord paralysis from this injury, which has resolved, but has left him with a loss of sensation in his throat. We haven't found any other children with Pitt Hopkins (PTHS) with this problem. Many children with PTHS have epilepsy. Some also have problems with reflux. Most have issues with constipation. As some children get older, a few have episodes of hyperventilation--although not nearly as much as it is reported in scientific articles. All the children have global developmental delays, especially in speech and motor skills. There seems to be alot of variability in how the child is effected. Victor has also had many upper respiratory infections that have landed him in the hospital, however this seems to be due to his dysphasia. After we found out with a swallow study that he was silently aspirating on thin liquids, we began thickening them, and now his upper respiratory infections are much more mild. He does have asthma, but so do all three of my children. So to answer your question in a round-about way (sorry, I think health problems are not necessarily part of PTHS for all children.
Yes, we live in North Carolina--in Winston-Salem, which is in the foothills of the mountains. My aunt and uncle live in Houston. The national chromosome 18 research center is in San Antonio. I have started a Pitt Hopkins Support Group on google groups, with about 20 familes from the US, Canada, UK and the Netherlands. There is a Pages section which has a photo and a description of a little over half of our families. Here is the link:http://groups.google.com/group/pitt-hopkins
Thanks again for your response, and I hope to keep up with you!
Take care,
Theresa
YAY!! You have a blog, check out mine too!!
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