A little about our children.............

   Jakob has a rare brain disorder called Joubert Syndrome.  Its also genetic.  Read below to find out more about his syndrome.  Jakob likes school very much, and his favorite show is Yo Gabba Gabba!  He really likes watching tv and laying on the floor with his sister near by.  He sits up in his special chair (I call it his NACAR chair).  He is also doing great with making new sounds lately and now says mama a lot and can babble now.

Ava really loves the water and swimming right now.  She also loves playing with her toys.  She enjoys books.  She likes mama and daddy to read them to her.  She also loves to turn the pages for us.  She can say mama, dada, kitty, Maggie (our dog), hi, baba, and bye-bye.  Her favorite thing right now is trying to walk as much as possible and eating lots of foods that mommy likes.  She prefers moms food over her own.

More about Joubert Syndrome:

What is Joubert Syndrome? Joubert Syndrome is a rare, genetic disorder that affects the area of the brain that controls balance and coordination. The disorder is characterized by agenesis (absence) or hypoplasia (underdeveloped) of the part of the brain called the cerebellar vermis and a malformed brain stem.

The most common features of the disorder include ataxia (lack of muscle control), an abnormal breathing pattern called hypernea, sleep apnea, abnormal eye and tongue movements, and hypotonia. Other malformations such as extra fingers and toes, cleft lip or palate, tongue abnormalities, and seizures may also occur.

Want to help the Joubert Syndrome Foundation?

They have lots of fundrasiers going on please check out their site and help our foundation!  http://www.jsfrcd.org/HowYouCanHelp.asp

 

   

Jakob laughing!   A Video of Ava just starting to walk at 10 months old....

 

Stories

8-23-08 I went to see Jakob at school today because I just wasn't going to make it tell Friday.  It was a great visit.  He was happy to see me and had lots of laughs and smiles.  Almost the whole time I was there he sat in my lap and watched Yo gabba gabba and we laughed and I sang to all the son
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I added a new video to the site today of Ava walking when she just started doing it at 10 months old.
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8-16-08  Well Ava is 11 months old now.  She is almost 23lbs and about 28.5 inches long now.  I guess we are done with breastfeeding now too.  I can no longer get her to stay still to eat.  So she is getting formula for her last month.  I am sad to stop since I know she is my last baby.  I
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8-9-08  Jakob came home this past weekend.  It was a really great visit.  He was so happy to be home and had lots of smiles and laughs for me.  I am happy to say he is now eating baby food!! They already have him eating after only a week.  I hated taking him back but he didn't seem upset at all
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8-1-08  Jakob's first day of school was yesterday.  He did pretty well and enjoyed most of the day.  He did get tired early though.  I called and checked on him a few times today and last night.  He is doing really well.  I am looking forward to picking him up next week on Thursday to come hom
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7-30-08  Jakob had a eye doctor appointment today.  They told us it was time to get him glasses.  So we got him a pair.  He is doing a lot better with wearing them then I thought he would.  This of course means he has to sit up more to wear them though.  At least there right in time for school
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Guestbook

Ava is walking so good!! She seems pretty proud of herself too! She is always so happy and laughing. Won't be long until kindergarten...
-- Auntie Glenda     Aug 24 2008
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Jake is so adorable in those cute glasses. He looks like he is having a great time and learning so much. I know it is hard for you having him away so much but he seems to be thriving.
-Auntie Glenda     Aug 24 2008
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jake is sooo cute!!! and happy!!! and Ava man she is a litte walking thing !! well that is all right now and talk to u later!!!
-viktoria     Aug 23 2008
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That video is so cute and hilarious! grammer luvs!
-     Aug 23 2008
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Ava looked so cute walking!
-Aunt Kelz     Aug 23 2008
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