Saturday, June 15, 2013
Memorial Day
With Aunt Jenny and Uncles Jon and Paul visiting we had a really fun Memorial Day. We did go on our yearly pilgrimmage to visit Aunt Katy's grave where the girls got to hear some of Aunt Jenny's memories of Aunt Katy (mom was too little to have any memories to share) and I think they really enjoyed learning more about their departed aunt.
My sweet, sensitive Mikayla also wanted to visit her friend Lucy's grave. Lucy drowned a year ago and ever since Mikayla has said she is one of her angels, always nearby and making Mikayla feel less lonely. I got directions to the cemetery from Lucy's mom, but it wasn't until I got there that I realized finding Lucy's grave was going to be like finding a needle in a haystack! Luckily the Spirit was with us, because once I finally parked and decided to look around Mikayla pointed me in the right direction and we couldn't have been more than 50 feet from Lucy's grave site. That little girl is so inspired!
School's Out and Summer's On
I've been really busy with the end of school, Aunt Jenny and Uncle Jon and Uncle Paul's visits, and playing cruise director now that school is out. But I have a few minutes tonight so lets get updated.
First, and update on Carter:
The new medication, Onfi, that is supposed to work on drop attacks is still working! He hasn't had a drop attack since he started taking the medication at the beginning of May!!!!! Unfortunately he's going through a stage right now where he likes to spit up his medication so we've had a few myoclonic and grand mal seizures but as long as we can get the meds down and keep them down we seem to have the seizures under control! Which means for now we have put the dreaded ketogenic diet on the back burner and are LOVING the new freedom that comes with being able to leave our man from time to time for silly things like a DATE (something we hadn't done for, literally, 6 months) which we got to enjoy just in time for our anniversary (happy 11 years, babe!) We also have been able to take his helmet off (again provided he doesn't spit up his medication) and he's happy to run and climb and play with his sisters. He gets worn out easily on this medication, which isn't always a bad thing as it allows mom to get a break once in a while. Fingers crossed and prayers said that we have finally gained sustainable stability...
Secondly, Mikayla: The results of her muscle biopsy show that there is no disease in her muscle tissue. So now we can mostly rule out anything that would cause her heart muscle to degenerate, something that is very encouraging. Unfortunately it means we are no closer to finding a diagnosis about this girl and now we just get to watch and see how she continues to develop. Carter has now surpassed her in size, although he is a big boy, but Mikayla doesn't seem to mind. She's really excited to start kindergarten, and just like her big sister before her, asks almost every day if today is the day that school will start. We are so grateful for the wonderful special ed preschool she attended for the last two years and we are sad to have graduated. Mikayla had almost her entire primary class in that preschool for one reason or another, and they had a great time together, eventhough quite the love triangle developed (or maybe quadrangle?). Here she is at graduation with her admireres, 2 of which have already proposed:
Third, Alyssa:
finished 1st grade just as strongly as she started it. A couple of tears were shed on the last day. This is one Momma who is proud to be wrong and so grateful I didn't change Alyssa's teacher. Ms. East was amazing and really grew to love the kids in the class. After kindergarten Aly wanted to grow up to be a veterinarian, after 1st she has decided to be an astrophysicist in order to prove the exhistance of life on Europa--I'm not sure what we're going to do with her after 2nd grade!
First, and update on Carter:
The new medication, Onfi, that is supposed to work on drop attacks is still working! He hasn't had a drop attack since he started taking the medication at the beginning of May!!!!! Unfortunately he's going through a stage right now where he likes to spit up his medication so we've had a few myoclonic and grand mal seizures but as long as we can get the meds down and keep them down we seem to have the seizures under control! Which means for now we have put the dreaded ketogenic diet on the back burner and are LOVING the new freedom that comes with being able to leave our man from time to time for silly things like a DATE (something we hadn't done for, literally, 6 months) which we got to enjoy just in time for our anniversary (happy 11 years, babe!) We also have been able to take his helmet off (again provided he doesn't spit up his medication) and he's happy to run and climb and play with his sisters. He gets worn out easily on this medication, which isn't always a bad thing as it allows mom to get a break once in a while. Fingers crossed and prayers said that we have finally gained sustainable stability...
Secondly, Mikayla: The results of her muscle biopsy show that there is no disease in her muscle tissue. So now we can mostly rule out anything that would cause her heart muscle to degenerate, something that is very encouraging. Unfortunately it means we are no closer to finding a diagnosis about this girl and now we just get to watch and see how she continues to develop. Carter has now surpassed her in size, although he is a big boy, but Mikayla doesn't seem to mind. She's really excited to start kindergarten, and just like her big sister before her, asks almost every day if today is the day that school will start. We are so grateful for the wonderful special ed preschool she attended for the last two years and we are sad to have graduated. Mikayla had almost her entire primary class in that preschool for one reason or another, and they had a great time together, eventhough quite the love triangle developed (or maybe quadrangle?). Here she is at graduation with her admireres, 2 of which have already proposed:
finished 1st grade just as strongly as she started it. A couple of tears were shed on the last day. This is one Momma who is proud to be wrong and so grateful I didn't change Alyssa's teacher. Ms. East was amazing and really grew to love the kids in the class. After kindergarten Aly wanted to grow up to be a veterinarian, after 1st she has decided to be an astrophysicist in order to prove the exhistance of life on Europa--I'm not sure what we're going to do with her after 2nd grade!
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