What Do You Do When You Don't Know?

As I've said before our 2 1/2 year old daughter was diagnosed with 15q24 syndrome (a micro-deletion on the 15 chromosome) when she was around 16 months old.  As a parent my first questions were: A) What does that mean?  B)  How will this affect her mentally and physically?  C)  What will she be like as a teenager?  D)  What will she be like as an adult?   And we of course received the answer we didn't really want, "It depends" and "We're not really sure".  Luckily I'm the cool headed one of the parenting team in our house and I was able to circumvent this questioning with the phrase "In your best estimate what will she....A, B, C, D.  That's one thing I've learned from dealing with doctors, very few of them want to give you and absolute- for obvious reasons.  My mother suffers from MS (Multiple Schlerosis), she has declined rapidly over the last 10 years and is now confined to either her bed, wheelchair, or her recliner.  She depends on help for everything from getting in and out of bed to getting dressed to going to the bathroom to eating.  It's not a disease I would recommend.  But through her illness it has been very hard to get a doctor to give an absolute answer.  Which in the doctor's defense, MS, just like 15q24, isn't very well understood.

Is that what our little Bella has to look forward to, we wondered when she was 24 months and still not walking?  Thankfully at about 25 months she took off, I mean she wasn't running but the girl was walking!  Then after walking the speech took off as well!  From the time Bella was diagnosed she has received "intervention" through ECI (Early Childhood Intervention), it has been a Godsend.  Therapy 2-3 times per week was very trying but definetly worth it.  Now her case worker comes twice a month and checks on her progression, which he is very amazed at.

Of all the therapies Bella has done the most significant one has been Equine Therapy.  Once again, thankfully a good friend of ours is the director of "Hanna's Horseshoes of Hope" a local non-profit that provides Equine Therapy.  Bella responded more to this therapy than any of the others I believe.  Don't get me wrong they've all been beneficial but Equine Therapy builds a different kind of connection or bond.  We take Bella to "HHH" pretty much every Saturday to ride.  She loves Geronimo, the broke down old Shetland Pony that she rides, and affectionately calls "Mo".

We still don't know what the future holds for Bella but I don't worry about it like I use to.  We are providing her with all the resources at our disposal to ensure that we are doing all we can do.  And I think at the end of the day that's all a parent really wants to know,...."Did I do all I could do?"

http://www.hannahshorseshoesofhope.org/

15q24

Genes are strange and amazing things.  Since I majored in Biology, about 15 years ago,  and took a genetics class I like to try and convince myself that I understand what the doctors are talking about when they start spurting their information to us about our daughter.  Truth is I'm pretty much clueless about the situation.  I made a "D" in that genetics class, a hard earned "D" I might add.  That was before the CSI series' and all the cool stuff we see done with genetics today.  All I really wanted out of the class was the 4 credit hours and an understanding of how you can get different colored Labrador retrievers in the same litter.  I got the credit hours and a slight understanding of the dog thing, but I've long since forgotten it. 

I think,...no I know, one of the hardest things a parent can hear is a doctor say, "Your child has a rare chromosome disorder and we really don't know much of anything about it.  It's simply called 15q24."

It at first sounded to me like something George Lucas would make up for a Star Wars movie.  Luke Skywalker, Hans Solo, r2d2, c3po, and 15q24.  What in the world was this doctor talking about?!  I had no clue whatsoever!  Thank goodness we live in the age of information, thank you Google.  Can you imagine 20 years ago getting information like that and having no way of finding research yourself! 

Sometimes I think we were better off without all our new technology, the search engines, the cloud.  But if it wasn't for new technology we wouldn't have our little 15q24.   We would simply have a child that we weren't able to understand why she is like she is.  But even at that it wouldn't matter I don't think.  Unique is always going to be unique.  And I for one love uniqueness.
Like the great David Allan Coe said "It Takes all Kinds of People to Make the World Go Round".

Mean Child?

Bella my two year old daughter has a mean streak, so says her mother and 6 year old sister.  She slaps, hits, and scratches.  I think it's just a survival mechanism myself, siblings are suppose to do that stuff, right?  And I can remember me and my siblings doing plenty of that.  I say the older sister and mother should just toughen up.

Camping Trip

Sarahbeth and Emma have been on Spring Break this week so Friday, since it was pretty much the end said break, we decided to all go camping out at my Mom and Dad's.  Tent camping with small children, espeacially one still in diapers, can be a trying experience.  So we, I should say I, opted for the easy way out.  We pitched the tent in Granny Jan and Pappa Denny's back yard;  swing set for the kids, bathroom within 30 yards, running water via the water hose, and the gorgeous pond which is the focal point of the backyard.  By pond I don't mean coy pond, I believe people in other parts of the Country call them tanks or stock ponds.  My whole life this pond or pool as we call them in Texas has doubled as a stock pond and a swimming and fishing hole.  I thought it would be a GREAT idea to take our two dogs with us.  You know let em run around in the country for a few days, be real dogs instead of the back yard by day, laying on the couch at night, type of dogs that they are.  Gracie, the beagle, is not use to automobile travel and evidently gets car sick.  Yep she through up in the car on the way.  Meanwhile, Jack the yorkie bounces from front seat to back seat the whole way.  As we started setting up our 12 person tent and the dogs kept running back and forth over the top of as I tried to connect all the poles and Bella our two year old was crying and Emma our six year old was complaining that she was hungry and Sarahbeth the wife was explaining what I was doing wrong in the tent set up phase,  I remembered why we don't do this very often.  Stay tuned for more excitement!