Public Service Announcement

This is going to be a bit challenging to write without sounding whiny or being offensive, but here goes.

This week was report card time (again). I have four kids and the first three were always straight A students in grade school. I can honestly say I did not post about their accomplishments, (then again, I don't think facebook was a thing) pay them for good grades or other sorts of things. They whipped through homework, never studied for anything and were always rewarded with good grades for their academic abilities. Notice, they were rewarded with good grades for their academic abilities, not for their hard work. Honestly, school was not hard for any of them. I felt it was their job to do their best in school and for that, I would tote them to the extra curricular's they loved ect.

As school became harder we did a few small things to recognize hard work. Whether it was a particular subject or struggling to manage time or stay organized.

Insert Ayden Jane. I see the constant photos and accolades of parents to who are celebrating their students "hard work" and resulting honor roll. Things are in a whole new light now. Even though I was more of the grouchy parent who just expected that the kids did their best in school, they were always on the list for a reward of some sort. Many of the awards they won had little to do with hard work and a lot to do with being smart kids with all the advantages of a supportive home and a fully working neurological system.

I mean, in all honesty, I think there is a lot more reason to celebrate Ayden Jane's accomplishments of B and C in her academic classes in second grade than there ever was for my other kids straight A's. Well, if you are truly rewarding hard work. I could ask for more accommodations and even modifications to the curriculum in order to improve her grades. I could have her sent to a special needs classroom and given alternate instruction. I could do my best to demand an aide for her.... But all of these things would simply be so that she could get A's and B's. I don't know that she would learn any more than she is now and I am sure she would not be working as hard.

So for the families who's kids truly work hard to receive those good grades than congratulate away. I would, however, say be sure the message to your kids is clear. You are proud of them for working hard, learning to use their talents and being the wonderful little people God made them to be. Sort of like, don't let them get caught up in feeling like you love them and are proud of them because of the grades they achieve. All kids are so much more than grades and eventually, they will come across something that does not come easy and the grade may not be an A.

We all know you will still love them to the moon, just make sure they know.

MTHFR - Dr Mom

I started the new b complex last Tuesday evening when it came. There have been noticeable improvements every day since. Today, it was on the soccer field. Ayden Jane loves to play soccer, but her response time is often too slow for the game. Sort of like her brain and her feet are really far apart and it takes too long for the message to get to them.

There were times when she was playing that she could shorten this connection and get to the ball, but she had to concentrate really hard. Like you see her determined and trying so very hard. Today, her brain and her feet were just connected. It didn't even seem like it was hard. Don't get me wrong, she wasn't suddenly ready for the Olympics or anything, but everyone noticed the difference.

The other curious thing is the lessened need for snacks. She had lunch at 11:30 between games and she did not come in from playing with the neighbors until after 7:00. I had asked her earlier and she said she just wasn't really hungry. So, after lunch she played soccer game, went swimming, trampolined, ran up and down the street with the neighbor kids, rode the pogo stick... Finally, when she came in she announced she was hungry and tired.

She had a chicken leg, a cheese stick and some fruit. Jumped up from the table and said, "thanks Mom, I'm going to bed."  That was it!

Level energy all day, happy, relaxed, flexible, processing quickly....  I LIKE IT.

Of course, where to go from here is my next challenge...

MTHFR continued

Ayden Jane tested positive for a heterozygous mutation in two places. I have read a fair amount on what all this means, both very scientific and more anecdotal. In the end, I am still a bit foggy.

What I do know is that when the MTHFR gene mutation occurs it means the bodies ability to convert folic acid into a bioavailble form is down regulated. Typically, a person can work around this without too much struggle but, of course, those with PWS already seem to have something going on with the B12. So, if you need folate to properly use b12, but you aren't good at converting folic acid then you are not getting the full bang for your buck from the b12.

Now history shows how significantly Ayden Jane is effected by b12 and there have been lots of parents who report dramatic effects from it. So, I was scared to mess with this. Seriously, it could be wonderful, or it could make her crazy. Or, it could make her crazy on the way to being wonderful.

I looked at lots of options and settled on the Pure Encapsulations B complex. here. I went with a balanced approach because it just made sense to start there. This complex has 400 mcg of Metafolin. My plan is to start with this complex and then add a bit more of the straight folate very gradually over time.

If you have managed to hang in there this long, now it's going to get good!

Day 1 response: I received a text message from Ayden Jane's swimming coach. She has never texted me before so this blew my mind. Here is our exhange:

 "I wanted to tell you how impressed I was with Ayden Jane today. She listened so well, barely had to ask me twice with instructions, was focused and had no trouble keeping up! Really proud of her hard work."

I responded and thanked her for noticing. That we were tweaking something in the nutritional supplement arena and hopefully we are on to something. Her response:

"You are! I thought you may be trying something. She was a different child and I could tell she loved it and was so proud of herself that she could listen and then do it. It was like her brain was awake!!"

Day 2 response: Substitute in school so not sure how that went. Once home, she had a snack and then hit the ground running. We went to the beach and I offered her supper before the pool. She said she wasn't hungry and opted for pool first. After pool her friends knocked on the door so she chose to put it off again. By this time it was about 7:15. She came in after playing and too a shower. Then chose to walk the dogs because, "I still have wiggles." Finally, by 9:10 she was tired and ready for bed, but still had not eaten ANYTHING since 3:30. She just said she was fine and didn't need anything to eat. 

Now I am guessing that this will not last. That she is sort of on a high from being flooded by stuff she has been managing without. It will take time to adapt to a new and improved typical.

Spring Break Lessons

First thing I learned on spring break, hopping from place to place, eating on the go... Ayden Jane is a wonderful traveler. I mean, I don't think 8 year olds are typically known for being wonderful on long car rides but Ayden Jane was great. She played, occasionally asked how much longer, waited really well for whatever the next stop was. Between the ipad, a few babies, a magic tree house book and some coloring books she kept herself as happy as a clam.

As for food, I packed a cooler with a few key items for snacks. We had the coconut bars I make and the warrior chia bars I buy. Both are things she eats regularly. We also had some nuts in nice little prepackaged 100 cal packs which are easy to slip in pockets when heading into places. Honestly, she hardly used them though. I also brought a loaf of bread I make and a small jar of peanut butter so we had an easy meal wherever we landed. Drink wise I put in some coconut water and one of her cups so we could do her half coconut water/half water she likes and keep her hydrated.

Along the way we ate at more fast food spots than I care to admit. Among them, Chik fil a, Wendys, Taco Bell, McDonald's and Moe's. Ayden Jane is great at just choosing decent options at each and being happy with that. Early on I was worried about weight gain during out trip. I mean we were still trying to shed the last of the weight gained when I went away. I am thrilled to report that when she stepped on the scale back at home she was at a great spot. In fact, if anything she lost a half pound or so!

We did have one rough day with one MAJOR fit. I think it was a bit of my fault though. She had gone up to bed and as she climbed in she told me she wanted a coconut bar because her "tummy growled". She uses this term occasionally and it must be uncomfortable. I told her I did not think she needed one and she should try to go to sleep. Well, the tantrum that ensued was a doozy. I realized by her lack of control and ability to reason she likely needed the snack, but now was pretty well backed into a corner. I couldn't set the precedent that if she tantrums she gets food.

I rode it out until she was reasonable again and we decided a better way to deal with this if it happens. She agreed to trying to go to sleep for 5 minutes and that if she can't, she can come tell me she tried but thinks she really needs a snack. I left her in bed, telling her that if she could not go to sleep to come ask me with good manners for a snack. I didn't hear from her until morning.

We had one other tough spot when she overflowed a toilet (the handle sticks) and had to freak out over something that was not her fault. You know, something I caused so she did so about clothes.... She recovered very quickly and we went on with our day. In the end, I'd say 2 meltdowns on a week long trip is pretty decent for an 8 year old, PWS or not.

Spring Break - Part 3

We left South Carolina intending to hit Carowinds on our way home. Ayden Jane is just barely tall enough to ride ALL the rides there but had never actually even seen giant roller coasters. We had told her all about it and had originally planned to hit it on the way up, but with Mckenna suffering a nasty high ankle sprain in a soccer game we decided to push it to our last stop.

Around Tuesday, as we were in Wheaton the weather in Charlotte looked terrible for Friday. Dreaded thunder and lighting - nothing stops a roller coast quite like that! I kept watching the weather and finally told Ayden Jane I did not think it was going to work. That we would have to take her there another time. She was sad, but honestly I think she dealt with it really well. Probably because Noah was there when we looked at the weather and he just has a way of convincing her in a way that there is no arguing. It's like magic.

We left Wheaton with the weather still not looking good, but I kept an eye on it. I decided we did not need to make it all the way to Charlotte, just close enough that if the weather looked doable in the morning we could get there. I was exhausted but the weather looked passable so Mckenna and I talked it over and we went for it. Ayden Jane was so excited.

Little did I know that it was one of the best decisions ever. There were no crowds, no lines, no waiting on even the giant coasters. Ayden Jane LOVED every thrill ride in the place. She truly proved to be as fearless as we thought as it come to motion. She wanted more speed, more spinning, more heights.

Mckenna showing Ayden Jane the way.

Ayden Jane's favorite. With no lines she just rode it over and over and over.

Heading up for a giant free fall.

So tall and she LOVED it.

Spring Break - Part 2

After spending some great time in Indianapolis we headed on to Wheaton (a Chicago suburb). Noah is in school there at Wheaton College, and we enjoyed hanging with 'Uncle Pete, Aunt Fo and H'. Great friends from my college days and their cool little dude. It was a crazy busy week for them but they were so kind to let us crash their home.

We enjoyed catching up on life, letting Ayden Jane and H play, hitting local parks and, of course, Chicago pizza. Noah came by and we just relaxed for a bit.

Our other highlight during our time there was going downtown. It was high on Mckenna's list of things to do and although we didn't quite get to see everything she wanted, we were treated to much more than we expected. We had a wonderful day at Millennium Park, saw The Bean and enjoyed the Chicago Institute of Art. I was pretty lost but Mckenna was right at home and knew more than I realized about artists ect. Ayden Jane was her typical curious self and wanted to take it all in. I'm sure we only scratched the surface of what there is to see and learn there but it was great. We also managed to squeeze in a nice walk down Michigan Ave and view of the lake front.

Ayden Jane and K renewed their friendship. There is something really cool about having friends that share your medical baggage, but with K it is even more than that. They share an awareness of the syndrome and how well they are doing with it. It was funny to listen to them talk numbers of carbs and diet ideas like it's typical conversation for a couple of kids to be having. K is a great kid and I have no doubt he will have Ayden Jane's back for many years to come as they continue to figure this thing out.

This family... words will never be able to express what they have done for Ayden Jane over the years. They not only have the brains and background to further understanding and treatment for PWS. They worked incredibly hard to improve life for K and have shared all they have learned openly, and they care so genuinely for others who walk the same life. Their family has sacrificed time, energy and finances in ways I am sure we will not ever comprehend and the benefits to many, many future families are great.

Spring Break 2016 - Part 1

Wow. What a week we have had. Mckenna, Ayden Jane and I left Pawleys last Friday in search of adventure for spring break. We covered a lot of miles, enjoyed the company of friends along the way and had a grand time.

First up was a quick visit to get a glimpse of a sweet baby boy. It was brief but a very important part of our mission. Next stop was Indianapolis to visit with the amazing Walker clan!

We piled in on them for Easter fun. Egg hunting, a trip to the zoo - what more could we want? 

Ayden Jane loves knowing other families who have kids with PWS and eat like she does. She has a heart for the ones younger than her and asks often about how they are doing. So fun when we get to visit and she sees for herself the amazing things kids like E are doing. It is also a treat to just do life for a day or two with families who totally get the quirks life with PWS throw at you. Types of food, the need to eat when it's time, reminding to drink, even those darn shots at night. Talk of supplements and doctors and new possibilities on the horizon is good for the soul.

It was a fabulous way to start of an amazing week with my two awesome roadtripping partners.