Less is More

Ayden Jane has amazed me once again.  The other day, she asked to pack her own lunch. You would think that she would pack a FULL lunch but on the contrary. It was a light lunch. In fact, we asked her if it was enough and offered ideas for more to pack in it. The answer was fascinating: I always eat everything you pack but when you pack too much I feel yucky by snack time. Like my sugar is low. 

Now, we have been fighting this dropping sugar thing for a while and I have talked through it with Dr. M, tried adding extra fats or extra proteins...  With no other ideas left and still feeling like something wasn't quite right, I just sort of decided that the early snack would have to get her through and I would just have to hope she out grew whatever was going on.

So I tried Ayden Jane's less is more technique with her lunch. I am happy to report that after 4 days of the new improved 'less' lunch Ayden Jane comes home from school less hungry and with more energy.  Yep, you read that right. I asked Dr. M if it is possible for her to simply be over producing insulin in response to a bit too much food after a relatively long time without food. (4 1/2 hours). That's what we think was happening! Then, since she is not starting the roller coaster of high insulin, low insulin... she feels better, has more energy, and is less hungry.

I'm glad one of us was smart enough to figure it out. Today she was checking up on me. As I handed her lunch to her on the way out the door she stopped and said, "Just 3 things right Mom? Not too much?"

She has been a happy bundle of energy this week. On the second day of the less is more trial she came home and didn't even make it inside before she was playing with the dogs and having a blast. No snack at all. So much energy I pawned her off on Gary and they took the dogs on an adventure.

So cool that this kid is starting to be able to read the signals her body is giving her.

Conversations with AJ

So after AJs experience with the sugared drink she has had lots of questions... 
I know, shocking.

AJ:  are fake sugars bad for me?

Me: yes

AJ: but sometimes you let me drink things with fake sugar and they don't
give me a headache or suck up my energy or make me hungry. So why are they bad
for me?

Me:  a lame attempt to explain that just because they don't crash her system
they are still not good.

AJ:  what would dr miller say if I told her I drank fake sugar. Like had a diet
coke.

Me:  she would say diet coke and other drinks with fake sugar are bad for you
and you should drink water.

AJ:  but I hate water and fake sugars don't make me feel awful. What exactly do
they do on the inside that's bad for me

Me:  it's hard to explain.

AJ:  Well can you please ask Dr Miller to explain it to me so I can understand!

We did in fact ask Dr. Miller because no matter what I said it was not what she wanted to hear so it was deemed incorrect because, after all, I am just a mom.  AJ was less than thrilled with the answer from Dr. M, but we moved onto another subject.

I also had another small issue with Ayden Jane and food.  She was at her swim meet and hanging out with the other kids.  No one has a clue about Ayden Jane having PWS because, well, I don't see any reason they need to.  Her friend was eating some sort of cheese crackers.  She offered some to Ayden Jane.  I was watching from a ways off and they were looking at the box.... I thought they were reading some game or something.  She had asked her friend (8) to read it and see if it had any sugar in it because she cannot have sugar.  Her friend 'read it' and declared that it had no sugar so Ayden Jane started to eat a few.  I stopped her and we chatted about it after the meet.

 

The conversation led to this, that there are "different types of sugar". I introduced her to the word carbohydrate and told her it is the big fancy word for all the stuff that her body turns into and uses like sugar.  So, for example, fruit has sugars and too much of those is a problem but that she is okay with some a few times a day.  So that is now considered fruit sugars.  We talked about how crackers and noodles and bread and cereal have grain sugars and that those her body cannot use at all.  That most people can use those sugars and they are even good for them.  Then we talked about pure sugars.  I told her that these are like in candy and cookies and cupcakes and sugared drinks.  That she absolutely cannot have these as they will cause the reaction she had to the drink the other day.  That they are not good for anybody but most people can have them occasionally as treats and be just fine.  She is clear that she is not to eat anything from her friends or there will not be swim meets.... (I know it sounds harsh, but it's how we roll)

 

It is a challenge to stay one step ahead of this kid.  I mean, to have to explain all this stuff to a kid who just finished Kindergarten seems kind of crazy.  At times I find myself wanting to just give her the "because I said so" answer but she won't accept that answer anyway.  She is becoming so independent and more 'typical' by the day.  She will be in situations like the swim team one with more frequency. 

 

I guess I am thankful for the drink mistake and drilling in the consequences (she hadn't felt the hunger consequence before).  I just wish there was a magic formula that would tell me how much independence she can safely handle and how much I need to hold her back to keep her safe.  How do I know she understands enough to take on a complex issue at age 6.

 

She is smart.  She asked me if she can't have fake sugars then when will she get the medicine that will help her Krebs cycle enough that she can handle some real sugar.  (Dr. Miller told her about Beloranib) I told her that Dr. M is making sure it was safe and figuring out just how much... that it would take time because she had to be very careful to make it just right :)  Ayden Jane answered that if Dr. Miller is willing to work so hard, she will try to drink water.  I'll take that as my win for the day.

A Day (or 2) of Eating Like Ayden Jane

Well, apparently I had comments waiting to be moderated.  Who knew?  Mostly they were questions from a few posts back what Ayden Jane eats these days.  Well here goes.

Breakfast:  We learned early on not to mess too much with breakfast...  Every morning starts with ketochocolate.  These are home made and are basically coconut oil, a bit of butter and cocoa powder sweetened with stevia.  Ayden Jane checks in with me in the morning to be sure it is time to get up and then heads to the freezer.  This keeps her happy for a while so I can wake up!  Once it is time for me to make breakfast it always starts with 1/2 an avocado with a bit of honey and cinnamon.  I know it sounds gross, but Ayden Jane takes all her carnitine, iron and even prebiotic mixed in there and never complains.  She also eats a slice of cheese, 'spoons' of pnut butter, almond butter and coconut oil.  Yep, right off the spoon.  She gets to pick a fruit which varies according to what I have on hand.  She also takes pharmaNac so that's her drink and sometimes she also has added water or almond milk.  Lastly, 1 scrambled egg.  I know it's a LOT, but this kid is averaging 1600 calories a day!  (or she was last summer when really active)  In the end, if you look at it there are lots of sources of good fat in the coconut oils, almond butter and avocado.  Some protein sources from egg and cheese and carbs in her fruit.

She has lunch at school... Today I packed egg salad, coconut bar (a keto recipe), a keto candy, celery with ranch and almond milk.   Generally the same format every day:  chicken salad, egg salad, hard boiled egg ect; almond milk, keto candy, fruit or veggie and often coconut.

Late afternoon snack at school (they eat lunch at 10:45) is pretty much always almonds, walnuts, a few chocolate chips and blueberries.

Afterschool snack today was 'spoons' and coconut bar.  She has these a lot because the spoons are fast and she and can take the bar with her and head off to play with the boys.  Oh, and today she also had a clementine with the boys.   

Supper she had grilled chicken and grilled onions and peppers.  (she eats the least at supper) Generally I try to have her eat whatever we all eat minus the grains.  So, hamburger bunless, taco shelless, meat and veggies without the rolls or potatoes... you get the picture.

Each day she gets a bit of unsweetened applesauce to get the second dose of carnitine in.

I have found the keto recipes to be awesome.  They taste really good (I was surprised) and if I use them as the base for the meal, then I can adapt the rest to everybody.  Example is if I make keto pancakes the others can use syrup and Ayden Jane gets an alternative.  Having thing like the coconut bars and keto chocolate make it easy to hand her good fats.

So, no grains, no sugars, just good nutrition packed food and remembering fat is her friend.
 

Keto May Hold Answers

Summer is flying by.  So many things to post about lately... so little time.  One of the things that is being discussed in the PWS world is the ketogenic diet.  It is really fascinating.  I am not a nutritionist by any means and really do not know much about food.  Honestly, I could eat the same thing every day and be perfectly happy.

That being said, I do notice how food effects Ayden Jane.  It has been pretty obvious for a while now that Ayden Jane uses fat for physical and mental energy.  Also, that she does not use carbohydrates for much other than to store fat.  How do I know these things?  I'll start with the carbohydrates.

When AJ eats a heavy carb load, she tends to struggle to get words out.  She gets almost sleepy and honestly a little mean.  Dr. Miller explained the Krebs Cycle and it made sense...

So, why do fats work well for Ayden Jane?  I think the answer lies somewhere in the information on the ketogenic diet.  I have not done the food logging and all to figure out how close to keto we are, but as I have 'listened' to people who are truly keto and others trying to get there I am realizing just how much fat Ayden Jane is already eating. 

The idea of a keto diet is to eat a high percentage of fats (good fats like avocado, coconut oil, nuts...) and limit carbs and protein so that you sort of force the body into using fats as it's main energy source - ketones.  Ayden Jane's diet is not truly keto genic because she eats too much protein and because I have not really searched out all the hidden carbs.  For example, onions.  Ayden Jane loves them. 

I really enjoy following all the discussion and I am happy that for now, we are fine without going all out keto.  (which is really hard work)  Also happy that if Ayden Jane starts to have trouble we can go a bit further with her diet.  For now, I will continue to keep her carbs low and focus on ways to get good fats into her.  I am determined to get more creative for her and am almost looking forward to learning to cook better this fall when quantity is no long and issue.  Almost...

Several People Have Asked...

Several times it has come up that folks ask me what a typical day of feeding AJ is like. I copied and pasted an answer that I put on the list serve and then made it a bit more complete. I know there are lots of other things I have left out, but hopefully it is a good glimpse into how we eat. Yes, I eat very similar to AJ. She gets that different people need different food to stay healthy. She has friends with allergies... I choose to eat like her, at least when she is awake, because it just feels right to me. I do not ask my other kids to follow suit. She knows that they eat bread and occasionally drink sweet tea. She sat one morning in the midst of Noah and his friends chowing down cinnamon rolls and enjoyed her avocado without a care in the world. That it is okay for them because their bodies work okay with those foods. She knows that those foods do not make her feel good or grow big and strong. So far she is totally okay with that. I know that this is bound to change as she gets older, but we are sticking with it as long as possible!

An example day for AJ would be:

Breakfast about 8 after we drop the big kids at school.

2 scrambled eggs, applesauce or yogurt (to mix her supplements in), 4-6 oz. of almond milk (she does not tolerate cows milk well) Sometimes she is still hungry and eats a few almonds on the way to school.

Snack at school around 10

I send a plastic cup each day with her snack. I put in about a 1/2 cup mixture of almonds, walnuts and blueberries. Water to drink at school. Sometimes I surprise her with a bit of dark chocolate. Other snacks that have worked well are hard boiled eggs or grain free mini muffins to go with her nuts.

Lunch after school about 12:30

1/2 sliced chicken breast with almond butter (that's how she likes it), Clementine orange, 1/2 an avocado. Almond milk or water. If we are out to eat we let her have unsweet tea or a bit of diet soda. So far these have not bothered her.

Snack after nap 3:30 or so.

Nuts, greek yogurt with a bit of honey and cinnamon, tomatoes, apples with almond butter are a few of her favorites.

Dinner whenever we get to it! Too many sports activities in our house for a real time. Often we eat really early at about 4 and AJ just waits, eats dinner with us and has the snack at the game.

AJ eats whatever we do for supper with the exception of any breads, pastas... For example when we have tacos, AJ eats meat, tomatoes and lettuce out of a bowl with a spoon. She likes salad so that works with any main course. Sandwiches? She eats the meat and veggies... Occasionally I make 'pigs in a blanket' with the mini sausage. I throw a few in with no bread. You get the idea. Cottage Cheese adds a quick, protein laden side to any meal. If I put a few frozen berries in it AJ thinks it is a huge treat!

Somewhere throughout the day while we are on the run she usually goes through more nuts (pistachios are great at ball games and for strong fingers) and a hard boiled egg white. With older siblings we spend several nights a week at sporting events. Concession stand food is AWFUL, but we when we are just not prepared,boiled peanuts it is!

Honestly, the best thing I did to get used to thinking grain free/sugar free/processed food free was to force myself to do it for a bit. I became MUCH more creative when motivated to satisfy my own cravings! Once used to changing how you think about food it is really not so hard. I don't really focus on calories, just quality. I know what foods hold great nutritional value and that's what we try to eat. If you really look into the nutritional value of grains you will see we just don't really need them. We need protein and good fats. We can get enough carbs and fiber just fine from vegetables and fruit. We try to eat real food, shop the outside of the grocery store and think about our choices when out to eat. For example the last place to look for a meal for AJ is on the kids menu!

There are lots of creative people out there with great cooking skills that eat this way much better than we do. I wish I were a good cook and was creative with preparing vegetables. I am allergic to seafood and it just makes not want to be anywhere near a fish. Both would be great. Ahh to be artful with grilling, searing and all the other meat preparations that don't require breading or frying. One day, when I grow up I will learn to cook. Maybe AJ and I can learn together.

Sibling Study Part 2 - diet

Well, I am a bit of a rebel when it comes to feeding Ayden Jane. The standard approach in PWS is to count calories and watch weight gain/growth to determine how to adjust them. I have chosen a different path. (I know I am not alone, but at times it feels like it) I choose to feed Ayden Jane a nutrient dense/grain free diet. She eats things that her body can use for growth and energy and .... What does this mean on a daily basis? I skip all grains (bread, crackers, cereal, pretzels, pasta) and junk food (sweets, chips...). She eats lots of meat, fruit, vegetables, nuts, eggs, yogurt, avocado... It is sort of like the paleo diet, but just Ayden Jane style. Now, I also have a great sense of what a portion size should be for AJ so I would not say that she eats limitless amounts of food.

So how did it hold up? I turned in her 3 day eating log and AJ is eating about 1500 calories per day. I didn't really know if this was high or low so I looked it up. According to what I found which was just a quick google search, AJ is eating as many or more calories per day as is recommended for a typical child her age. Dr. Miller and Dr. Driscol think she looks great and are happy with her BMI.

Her diet actually looked a bit lower in protein than Dr. Miller really wanted to see. I am not too concerned about it though because I know that we were on the go and AJ had quite a bit more fruit than usual and missed some of the good protein she would have gotten at home. Dr. Miller agreed and just said that she can handle a few extra calories so make them protein. To me that means when I serve up her protein during the day I will just increase each portion size a bit.

AJ also meets and in some cases greatly exceeds all the RDA allowances of vitamins and minerals for her age. That's before her multivitamin. Basically, we should all eat like AJ.

Abs looking better, but what about those hips?

I am heading out of town tomorrow morning for my brother's wedding and I haven't even started to pack but I just had to do a quick update.

PT this week was great. Jen definitely feels that Ayden Jane is getting stronger and is very impressed with the ab work. The belly does not poke out so much and AJ is getting pretty good at sit ups on the exercise ball. I am not sure I could do them! I think the bump in gh has really settled in. I did ask her though about the way that AJ is bringing her knees together when she is bending ready to jump, and even some when running. Looks like a bit of hip weakness is back and she is slightly rotating when she does these things. It just looks to me like a 'less athletic' stance. You know, running a bit like your legs aren't quite under control. Now, to just maintain the abs and strengthen the hips at the same time. We shall see.

On the speech front, I think there have been some noteworthy changes. One example was in the car the other day. Ayden Jane saw a scrape on Mckenna's chin and said, "Mckenna have a owy on you chin. Does it hurt?" That second sentence is the one that is new. AJ has become conversational and asks questions... Of course, only when she is in the mood, but it is wonderful to know she CAN...

Lastly, food. Lately Ayden Jane has been putting off eating until she is completely unreasonable. I know this sounds nuts, but today she ate about 1 of her 2 scrambled eggs and the bit of applesauce I gave her to get the supplements down for breakfast. Then she did eat some almonds and tomato for snack at school about 11. She did not eat a THING until 3:30 after that and even at that I had to cave and give her a piece of dark chocolate to even get her to think about food. Finally, after I demanded she eat a hard boiled egg white if she wanted to go swimming she got into the swing of things. She followed up the egg with some chicken salad and off to the pool we went. I managed to get some avacado in her with supplements before bed. The problem with this is that she becomes a whiny, unreasonable grouch when this happens. I try really hard not to fall for the, just give her something... routine. Usually, I can get away with giving her some fruit to get her going, but recently she will just eat the blueberries and say all done. Grrrrr. I know, enjoy it now. Soon enough...

More on Food (ugg)

I am very excited to say that we are reaping some benefits to our 'food rules'. I have really pushed all of us to simply not allow Ayden Jane that 'one cracker' or 'just one bite' or 'one chip'. I have even really pushed the family to not share even things that Ayden Jane is just fine to eat from our plates. Sometimes it is really annoying.

So why did I choose to be so tough on these things? Well, I have 2 active teens and an almost 9 year old. They all have friends around at times and Gary has a very odd schedule working 12 hour night shifts. End result? There is almost always someone eating. It would be nearly impossible to monitor how much Ayden Jane really was eating if she was allowed to graze... Also, I was trying to look ahead to school where sharing food and trading food tends to happen. (Even when the rule is not to)


It was really hard at first. Ayden Jane was just in that toddler phase of wanting a bit of everything we have just like she wants to try to do everything we do. We had lots of whining, but held firm to the, "no, you cannot have those they are Noah's. If you are hungry you may have..." We have begun to say things like, "no, you may not have the goldfish because they do not make you strong. You may have..." For the most part if she is truly hungry she will climb up in the chair for the snack. Otherwise she whines for just a second and then is very easily distracted. At this point life is good.

So why the never, not even one approach? It just seems that with Ayden Jane black and white rules are much easier. Maybe it is age, maybe PWS or maybe it is just her, but she does not do well with rules that are messed with. At this point, Ayden Jane goes to the nursery at church and when they do snack it is always goldfish. They give the kids a little dixie cup with them... I pack almonds and at this point, Ayden Jane will tell them, "go get almonds in my back pack." They throw a few almonds in her cup and she is a happy little clam. Just the way AJ operates I know that she would have a really hard time with yes to a cracker today, but no tomorrow.

Well, at least all is well for now. Okay, she is two so its not always totally smooth... but there is no doubt at this point who is the boss. (yes, I mean me) At meal times she has hers and we have ours and she is happy with that. When the big kids are eating snacks she mostly is fine with it and just goes on her merry way. If she wants some the big kids are good and telling her it is their snack and to ask Mommy if she can have a snack... Laying the ground rules early was not fun, but it is paying off now.

Eating Out and On the Go

As you know we have quite an active crew. We are on the go a lot to various sporting events for all 3 big kids. Now even if I pack all the food Ayden Jane needs, the other need to eat. I am not up for always having the perfect picnic lunch packed away for every occasion. So I had to find some 'fast food' options for our on the go family as well as some easy snacks/meal replacements for Ayden Jane that were not too obnoxious to keep on hand. Just thought I would run through how we have made it work and feel free to let us in on any secrets you have found.

Breakfast is easy. Most anyplace has scrambled eggs. We have found that a huge treat for Ayden Jane is McDonald's fruit and walnut salad. We don't give her the yogurt because I have hunch it is quite carb loaded, but she loves the apples, grapes and walnuts. Sure the walnuts are not the best with the bit of sugar on, but it takes her forever to eat the little tray full and she does not care in the least what we are eating. We live in a small town but the McD's has a fun play place so it means we go to breakfast as a family and it is 'normal'. If we need a quick drive thru the apple dippers are just the ticket.

Our other favorites for lunch and dinner are Subway and Chik fil a. When we go to Subway we order the kids meal sandwich or 6" but ask for no bread and just to put it in the salad bowl. They often look at me like I am nuts, but hey... So she will get chicken or turkey for meat and then tomatoes, cucumbers, green peppers and a side of apples. Chik fil a offers lots of options. There is the standard chicken nugget where I just don't worry about the bit of grain in the breading. My favorite, though, is the grilled chicken and fruit salad for the 2 of us to split.

For quick easy snacks we generally use nuts. She LOVES the dark chocolate roast almonds as a treat. They are sold in larger quantities, but can also be bought in the 100 calorie pack. I almost always have plain or dark chocolate with me. Ayden Jane also loves pistachios. As an added benefit, she really works those little fingers to open them up. Hard boiled eggs are another favorite for portable protein and mandarin oranges for easy open fruit.

More to come, but sleep for now.

So What Does She Eat?

It seems we concentrate a lot on what Ayden Jane does not eat, sometimes I get the question what does Ayden Jane eat.

I do not really count anything or keep any formal track, but I do sort of keep a running estimate in my head of the sorts of things she has eaten through out the day. For example, if she eats a lot of fruit early in the day we just sort of skip it later... I try to be sure she is getting a protein and/or good fat with every snack and make sure she does not go too long between snack/meal time.

Here is a sample day. Ayden Jane is 2 1/2 and about 28 pounds (I think, but I don't even own a scale! Yikes!)

Breakfast: 8:30 or so

2 scrambled omega 3 eggs
fruit and walnut salad from McDonald's (but not the yogurt)
Tablespoon of applesauce to get the supplements in her
Fish Oil, vitamins, carnitine fumarate, ribose, B-12 and creatine

Snack: 10:30 or so

almonds and a piece of dark chocolate

Lunch: 12:00 or so

1/4 to 1/2 cup chicken salad with walnuts
a few blueberries

Snack: 3:30 or so

Celery sticks with almond butter
Hard boiled egg white
a couple of apple slices

Supper: somewhere between 6 and 8, she really could care less about supper

1/2 an avocado with a bit of plain yogurt and supplements mixed in. (same as morning supplements) What ever vegetables or meat we had with supper that I can get her to eat.

I have never done the math to figure out how many calories... the kid eats, but there are days I swear she eats more than Mckenna! As for liquid calories, she drinks water, unsweet tea, sadly a few sips of diet coke and probably 6-8 oz. of almond milk throughout the day. I would also say that she also eats another serving or two of almonds in bits and pieces when we are picking up a big kid or watching a game... and just cannot get to snack quick enough. When she is playing hard, she can run out of fuel suddenly so I always have something she can eat with me. She rarely asks for food at these times, you can just 'see it'. She slows down, her balance gets a bit off, she will just start to stare and her response time triples! It still amazes me how quickly she will rebound with a small snack though. As she gets bigger she can go longer between fuelings and 'crashes' more slowly so hopefully it will be a thing of the past soon. This summer when we are beaching and swimming would be nice!

Cookies, Complicated?

I am home making cookies right now. As I make them, I am struck with how strange life on planet Prader-Willi can be. The cookie has always been an example of a simple pleasure. I remember coming home from school to the fresh baked smell or watching the tins of cookies fill up around Christmas time as my mom took on cookie baking as a second job for about a month before Christmas. I have also made cookies through the years for and with my kids. Watching them lick the bowl and grin ear to ear is like the definition of simple pleasure. It seems the perfect simple pleasure for the 6 foot 3, nearly 15 yr old, hyperactive boy in the house!

Enter Ayden Jane. Now when I look at cookies I see danger. For Ayden Jane, this simple pleasure becomes more of a deadly sin. I figure there are a couple ways to go about solving this dilemma. I can try to find recipes that will replace... not happening. I can ban such substance from existence. Not likely that will stick for long. I think we will just have to use a combination of indulging the 'big' kids when AJ is asleep or maybe spending the night with _________. And find other indulgences for AJ as she grows. Going out for treats seems to work really well. It is just less stressful than having them around the house.

So far, AJ is perfectly happy with an occasional piece of dark chocolate as a treat. In fact, when she gets one, we usually tell her, "only one." Now, she calls these treats Only Ones. My game plan for preschool birthday parties next year is to give her dark chocolate or a nut butter muffin (which she calls a cupcake) as a replacement for whatever treat is given. Hopefully, she will be satisfied with these and be able to enjoy the party.

So, yes the cookie looks simple enough. Question is: Simple Pleasure, or Deadly Sin. Both perspectives need to live in harmony in my house. So far, so good.

Paleo Diet or something like that

I haven't said much about food with Ayden Jane. That is a little odd since that is a large part of what is effected in PWS. There are different ways to approach keeping our kids lean and healthy. Many folks work hard to balance calories using weight gain or not to guide how much to feed their children. We started early on to try a different path. It was mostly because I found the arguments for 'going paleo' compelling, but honestly in part because I found it easier to manage. Basically, we have food rules. Ayden Jane may eat ______ but may not eat grain products. We feed her every 2 1/2 to 3 hours, but do not push her to eat a large quantity just something. At times when we let her play too long without eating or if she takes a nap without a snack first she is really cranky. She usually will fight eating at this point and it takes some coaxing to get her restarted. Once she gets some protein or good fats in her she returns to her old cheery self. When she is done we clear it away and send her off on something else. It works for us. What is interesting is it seems we are not alone.

I had an e-mail conversation with Dr. Miller. I would post it, but I have not asked Dr. Miller about that so I will just describe it. She has seen in her clinic others who have kids close in age to Ayden Jane on the same style diet. One is eating 1600 calories per day and another 1300 and she reports they are both thin. They are eating approximately the same as their siblings. This is not the norm for kids with pws.

Following the 'food rules' in our house is not fun and I am sure that as Ayden Jane gets older it will be more difficult, but it is obviously working for her.

Now what

I sort of have that 'now what' feeling . The marathon and fundraising... is over. I am guessing the lack of an actual race and finish line is adding to the feeling. I don't do well with that sort of feeling, so I have moved on to tackle food and sensory integration. Food and cooking I am NOT looking forward to, but I really enjoy the sensory stuff. So why? What am I attempting?

Food. Ayden Jane needs all the right food and none of the 'wrong' food. It seems that a diet much like the paleo diet with no grains serves her well. I am heading down 2 paths with food. One is to turn my diet into Ayden Jane's diet. One reason for this path is that the more I read, the more I am convinced it is the best diet for anyone. Secondly, it just makes me feel like a hypocrite to ask her to stay away from all the cereals, crackers, cakes, cookies, candy... and then eat it myself. Not that I am expecting to be perfect mind you, but I need to do a whole lot better. Now, while training for the marathon I ate EVERYTHING in sight so it was not the time. The other thing I am looking to do food wise should be a natural outpouring of the first. I need to learn to cook. I think if I do not allow myself the convenience of processed foods to eat, I will more likely learn to find things that Ayden Jane can eat long term. I am hoping I will even find sort of alternatives for some things like ice cream... As I experiment and learn, I will let you know. As for now, I am in the reading books stage.

Sensory Stuff. Our kids with PWS seem to very frequently have some neurological glitches with sensory processing. There have been times I have posted some of our experiences but I am reading more books which will hopefully give me lots of good ideas to keep that little sensory system developing. I just have that momma feel that this is a key area for Ayden Jane long term. It seems to effect her mood, skill development, language development, confidence... I need a better understanding of the theory and reasoning behind it coupled with some ideas in my arsenal and I think we will have a great time this spring.

Christmas Break

We were sort of on PWS vacation over Christmas. That just means no therapies which means no therapy 'homework'. Once Ayden Jane sort of finished up her language spurt, we just played with our new toys, enjoyed having all the big kids home and hung out. Our schedule was wide open and it was good to relax. It is definitely time to get back into action though. We have really not kept track of food quantities at all, just kept up with the appropriate choices. The big kids are great with knowing what she is allowed to eat and what is off limits. They are also great about asking if it is okay to give her_____ at that particular time. They just seem to get it that I keep a running tab of about how much she is getting of fruit, protein and good fats in my head. No arguments from them. I do my best to make sure she has eaten very well (I mean quality not quantity) if I leave her with them and give them the 'easy' foods for choices to give her. So far it works well. Just seems that planning ahead is the biggest key.

We did attend a party over the holiday. I really thought that Ayden Jane would pull her shut down and observe routine. It was primarily adults and not too crowded, but there was a band and dance floor. Food was, of course, a buffet but AJ was really too distracted to care about the food. She ate one chicken finger and a slice of pork and when I thought she was heading for the cake, she just wanted to see the Christmas tree and never even noticed the cake. It only took her about 10 minutes before she was on the dance floor with about 7 other kids and she was dancing away. It was adorable! The party was for the husband of our PT (not because she is our PT, but because our families are close friends). One of the PT's that work for her was also there and remarked at how great Ayden Jane is doing. She was wondering how she could still need services! It is always so great to hear people that really know what they are saying to say how great she is doing.

We did have a 90 eval for PT this week. It was funny, because Jen asked me several questions about whether or not she could __________. They were goals we were working on before that crazy language leap. For several of them I had to say she WAS able to do it, but was NOT able during that couple of weeks. As for today? She is better than during the spurt, but has lost some skills she had obtained before it. So strange how it seems to take so much effort when obtaining new skills that her little brain just cannot keep up with everything.

Then Friday we had ST. I realized just how far that spurt took her when Nicole started with, "is she getting more consistent with 2-3 word phrases?" I chuckled and told her that we were now easily connecting 4-5 words and often using total complete sentences. Of course, Ayden Jane then proceeded to be totally quiet for the first 30 min. of therapy. UUUGGG. Actually, we sort of figured out (I think) what some of the problem is. Nicole brings new very interesting toys which would cause most kids to get excited and talk to her. Instead, Ayden Jane just gets quiet and thoroughly investigates them. She totally takes in everything receptively as I will hear her use words that were part of the 'new' therapy toy. For the last 20 minutes, Ayden Jane began to show Nicole all her Christmas toys. As she showed her and played with the familiar, she began to talk up a storm. She was telling her a story about something that happened previously, she was narrating as she played, she was telling Nicole how to do it.... We will have to work on the best way for her to work with Ayden Jane.

Diet: Frequent High Nutrient Foods

In the thread of still filling in the basics of how we care for and 'do life' with Ayden Jane FOOD in a huge issue. We have chosen not to count calories, but to limit the kinds of food Ayden Jane eats instead. I cannot say that we fully do the Paleo Diet, but maybe our own version which fits our family. The easiest explanation is to say she is grain free/sugar free. Yep, no goldfish, cheerios, bread, crackers, cookies, cupcakes,candy... I know it sounds impossible and we just take it a day at a time, but WOW does it seem to be working.

So what does Ayden Jane eat? Lots of yogurt, eggs, chicken, beef, nuts, vegetables (as many as we can get her to anyway) and fruit. She still eats a crazy mixture of yogurt, flax meal and egg whites with a tad of honey and cinnamon. I have been introduced to almond butter (AJ's favorite), avocado's, and other things I would never have thought to feed my others when they were toddlers.

One big thing we noticed about Ayden Jane is that she will suddenly just run out of energy. I believe it is a hypoglycemia of sorts. It is like she has a small tank which requires specialized fuel. When that fuel runs out she just stops firing. She gets physically tired and mentally slow.

We have chosen to focus on alternatives for Ayden Jane instead of juggling limits. For example, in the church nursery they hand out little cups of goldfish for snack. I send a small plastic bag with almonds in it and request that they give AJ the almonds in her cup. Hopefully as she gets older she will be able to speak up about the things she knows she shouldn't have and chooses the appropriate alternatives. Hey, I know it is a lot to expect, but I figure kids with alergies (like to peanuts) have to do it.

It is a work in progress, but that's what writing this all out is for. I hope that as time goes on I will come across lots of great food ideas.

Janet