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Monday, August 8, 2011

Well here we are in August and I cant believe I have not had any time to do anything but take care of the kids the entire summer.  The boys are quite a handful.  Especially with the difference in their ages.  Ryan wants so bad to be older than 9 and James is almost 16 but thinks he knows everything and is totally annoyed by Ryan.  Then of course we have Megan who is always keeping me on my toes.    We started several different things and it has been like a rollercoaster.  1st thing is the IVIG which we started in April and have done it weekly since and plan to continue for at least another 6 months.  Positives are that she is much  more alert and stronger and has been sick only a few times.  Negatives are that with the strength comes stronger muscle spasms and spasticity.  In late May we did botox for the first time - it had a little tiny effect - I dont think it was worth the injections into the nerves in her legs and hips - ouch.  It was horrible to watch and to hear her cry that shrieking sound of pain.  In late June we went to see the mitochondrial specialist in Atlanta.  She prescribed clonodine to help her sleep and gabapentin for the spasticity.  Tried clonodine first and boy did that one do the opposite of what it was supposed to.  It made her sleep at first for like a week and then it turned  her into the exorcist and her body remained stiff like a 2x4.  She was grinding her teeth so bad it hurt me!!!  Of course you have to wean off of that drug so for about 2 more weeks we suffered with her through the bad side effects.  Finally it was over and we introduced the gabapentin which seems to be helping.  We have taken it real slow and are not up to the full dose 3x a day until this next week.  She is a little more relaxed though.     Diet changes have been huge too - she is allergic to everything - including corn syrup solids so I am homemaking her formula from rice milk and a vegan supplement and some organic vegetables, etc. Ketogenic diet was a bust after all and since she is allergic to diary and soy it makes sense she was like a zombie on the diet.  People dont realize that food allergies affect mental abilities.  It is huge!!! She is starting to grow again finally.  She got so skinny she looked like a skeleton when she was undressed.  It is nice that we are starting to put a little meat on.  She is going to be 5 in October and is just at 24 or 25 pounds.  She was down to 22 pounds. 


In July we took a 4 day beach trip with Uncle Jimmy, Aunt Wendy, Dominick, JoLynn & Alexander - Aunt Jerri, UncleLes, Zoe and Lesleigh.  It was really nice and Megan did good for Megan.  Of course the heat of the day is not her friend and she doesnt really sleep at nite but we figured it out and had a good time.  Her cousing love her so much.  The pictures capture it perfectly.

video
Been doing lots of water therapy thanks to waterwaybabies.com.  It all helps.  And she loves it.

School starts on the 23rd of this month.  I am looking forward to the boys going back so it will be a llittle quieter here during the day.  They are wearing me out!!!!  James is in 10th and Ryan is in 4th this year.  Can't believe James is as big as he is - girlfriends, drivers licenses - ugghh!  It is all good but I dont know how ready I am for all of this right now.

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