Question

A friend saw a piece that a fellow mom of a child with PWS wrote for The Mighty.  The challenge was put out to answer this question:  If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? She challenged me to answer the same question.

It is a simple and yet, utterly complicated question. Of course the first thing that jumps into your head is the stark contrast between the shear terror of the words uttered by the geneticist and the amazing little person sitting next to you.

I would want to shout out only the wonderful moments and the unbelievable joys experienced as my Ayden Jane accomplished simple things that I feared she may not conquer.  It is an experience, an emotion, a gut-wrenching joy unlike any other.

At the same time you need to know that this journey will change you, it will change your relationships, but it's okay. The changes will show you what is important in life and teach you to think of others in a whole new light. You will learn to be dependent on God for every moment, for every breath. You will learn to place your child's present, her future, her life in God's hands.

Your family will find a new rhythm. Definitely not the one you anticipated, but one where each member finds a place and learns to use gifts they did not even know they had. Your family will grow to include many others who are on a similar journey. Your struggles will not be entirely the same but you will have a unique common thread.

You will be frustrated beyond words at times... You will at times feel isolated and lonely - not because your friends and family do not care, but because no matter how much they care, you have to cross bridges they have just never crossed. You will pour so much of your heart and soul into this little being you will at times forget who you once were.

Allow yourself time along the way to forget the words Prader-Willi Syndrome.

Raising this little being may not be the purpose you chose for your life, but it is an honor. The wonder and awe with which you will watch as she wakes each morning with a spirit of joy and tackles each day with such determination. She will show you that there really are no limits to what she can accomplish if given the time. She will teach you as much as you teach her.

In the end, you need not worry about Ayden Jane (although you often will). No matter what was said, what was predicted on that fateful day when you first heard the words Prader-Willi Syndrome, Ayden Jane wasn't listening. Even at age 7 she will choose not to hear of limitations as she will be too busy growing and thriving and learning and laughing and playing and .... being happy.

Instead, know that she will go about life doing what every other child her age will do. She will love school and swimming and soccer and riding bikes. She will develop incredible bonds with her siblings. She will show you her God given spirit of boldness and confidence daily.

You will receive many hugs, enjoy loads of belly laughter, watch with pride, and jump for joy.

So trusting in God, embrace the possible right along side your little one.

In a Good Place

We have had a busy fall/winter! Ayden Jane has stayed amazingly healthy with her new working immune system (thank you lactoferrin), we have dropped all artificial sweeteners most of the week and we have started MCT oil. All combined it has really helped Ayden Jane continue to thrive!

We had her labs done last week and oh how I love when her doctors say they are happy with them! Everything looks great and nothing for us to change. Yippee!!

Ayden Jane is still adjusting a bit to the MCT. Definitely taking longer than I had expected. I figured if I was staying at the same dose she would level out pretty quickly. At this point I think I need to just get used to our new normal. Loads of energy and an increase in volume. The best part, though is that she is continuing to improve with getting her big ideas down on paper. Yay! The letters are coming much more quickly. Much less erasing. Much less brain power needed to focus to make them leaving more ability to remember what she is trying to say. (well, at least that's what is seems like on the outside)

In other news, the swim team Ayden Jane had been swimming with in the fall lost it's aquatics director. No coach, no training... Ayden Jane loves swimming so much so I went on a search to find another place for her to swim. She has trained 3 times with the new team and wow! She works hard! It is definitely a bump up in level and she is a little frustrated that she is not as fast as the others, but talk about a workout.

Honestly, after I watched her the first night I was amazed. Tons of kids, she did not know a soul, loud environment of an echoey indoor pool, loud music playing over the din, new equipment, new adults giving direction, lots and lots of swimming, going off the blocks... She just kept on going, kept on doing her best. I was a little nervous after practice to ask her if she liked it because I thought she must be exhausted.  She loved it.

So, first semester of grade 1 is in the books and was successful. Second half of first grade is just beginning and looking great! I know that Ayden Jane is healthy on the inside. Her writing is improving daily and doing math with her the other night was impressive! We have zero food issues as she knows what she can and cannot eat and wants to be healthy and feel good.

I guess you could say we are in a good place. I am hoping a bit of weight may drop off, but she is tracking right along with her siblings so in a lot of ways I think she is just right where she is supposed to be.  

My Tortoise

I was chatting with a friend, a fellow PWS mom, and I mentioned casually the incredible fighting spirit the kids with PWS have. I'm not sure if fighting spirit is totally right, but there is definitely a never give up attitude.

I started to think about it and I could just picture so many little ones with PWS that I have come to love and I just see the "can do" spirit in them. I don't know if that statement applies to lots of kids that grow up with medical issues.  Sort of like a by product of all the love and care and work poured into them. What I do know is that it only takes a short time of hanging with them to see it.

There are times when I just stop and watch Ayden Jane in awe. I mean, she can do so much, but I know the amount of extra effort learning all those things took. Even things the rest of us take for granted like controlling her body to walk, run, jump, kick, throw and catch a ball... The amazing gift of spoken language.  Let alone the extra effort it takes to achieve in school. Nothing comes easy, well nothing other than laughter and joy.

I was thinking about all of this tonight as I watched her in swim team.  She has started a new, more competitive team and tonight was her second night. She is the youngest and definitely has a ways to go, but she worked so hard.  She gives everything she has and tries anything they ask her to. No fear! She just goes after everything like she knows that she can do it. If she can't do it yet, she just keeps trying and knows she will eventually.

Okay, I admit there have been a few things that she started to wonder if she would be able to do and it was not fun. But, that attitude of giving her best toward everything she does and working through life like the tortoise, slow and steady. It is an amazing thing to behold. No doubt, in the end she will win the race.

MCT Oil Continues to Make Improvements

 I started MCT oil over Christmas break. As I said in previous posts I pushed hard and went up way faster than I likely should have and we did pay with a few consequences.  Mainly Ayden Jane running 1000 mph and then crashing...

I managed to push the dose to where I wanted and then it was time to just let the effects settle in. I have always known that that her brain worked extremely well on fats.  That's one thing that is easy with her, you can see on the outside what effects different things are having on the inside.  When she was little it was avocados, almonds and nut butters.  Later I added coconut oil and was more intentional in what I was doing because I was learning the why's behind the effects. (if you are super interested or just can't get to sleep one night you can go back to the beginning of this 7 year journey and read how it unfolded).

I posted 2 pictures of Ayden Jane's writing. They look much like the comparison of the beginning of school and the end of the year.  They are lists Ayden Jane wrote of her weekly spelling words. Each was done the first night with the new words, so no practice.

Here is the amazing part. The first one was Monday January, 5.  It was the first day of getting Ayden Jane on the full dose of MCT oil.  As the week went on I saw some improvements in her writing which I thought was remarkable enough.  After all, we have struggled with writing for what seems like FOREVER.  (okay, she is only 7, but as AJ would say, "I have worked on this my whole life!")

The second picture was taken January, 12. That's right, just one week apart!! I keep staring at them. The brain/neurological system is fascinating! This shows me once again that the abilities are all in there.  The connections are there if I can just keep finding ways to fuel that brain.

More on MCT

So as I said on the last post, it is recommended to start very low and raise slowly when using MCT oil. I know this to be true because I did not listen!

My biggest concern was with gut issues. Since she was not having any problem there I went ahead and upped her dose quickly to get it where I wanted over Christmas break.  First bump proved to cause a few sleepless nights. Second bump a bit more of the same.

Dr. M told me to slow down or Ayden Jane would get exhausted. Yep. She was right. The big bumps in MCT had Ayden Jane running 1000 mph. Constant activity, over firing brain, running into things, bouncing, squeezing, seeking.... And then the crash. Over emotional. Oh the drama... then crying herself to sleep at 5 pm, woke up at 7:30 and had a bit of supper and asked to go to bed!  She slept through until 6:30 this morning and wow!!  Back into high gear.

I am hoping she was not predicting this would happen over and over... I guess I'll find out!

MCT oil

A while back. I mean a long while back. At least a year back, I tried giving Ayden Jane MCT oil.

Wait, let me start with a little background. MCT oil is a medium chain fatty acid that is derived from coconut oil. Several families have used it with great benefits cognitively and in energy. It also tends to be harsh on the gut so it needs to be started very slowly.

Now, back to my story... Over a year ago I tried giving Ayden Jane MCT oil. I gave her a small dose and she proceeded to fall asleep. Next day? Same thing. And yep, three for three.  It was obviously not giving Ayden Jane the typical energy boost. It just made me uncomfortable so I abandoned ship.

I have been thinking about it and wanted to give it another shot. I decided the two week break where Ayden Jane would pretty much be attached to me 24/7 would be a good time.  I started low. In fact, the first day I only gave her 1/4 tsp. Over the two weeks I have managed to get her up to 4 tsp split out over the day.

I give her 1 1/2 tsp in the morning (actually going to 2 tomorrow). 1 1/2 tsp. at lunch and finally 1 tsp around 3 pm with her after school snack. Getting it in her lunch now that she is at school is a bit tough but until I can get her single doses up to where I can do before and after school, I will just have to figure it out.

So what have I seen as a result? Well, I had to go up pretty quickly because I wanted to get her dose up towards where I wanted in the two weeks. The rough patch came during the second week when she started having a bit of trouble sleeping. Basically her brain just kept going like crazy even at night. She was wide awake and had important questions or vivid dreams that interrupted her sleep. It took a few days for that dose to settle in and I think I like it. She is back to sleeping well and seems to have great mental energy all day long.

I checked with Dr. M about dosing amounts and tips. She said that there weren't really dosing guidelines per se but that she recommends 2-3 tablespoons spread throughout the day. Honestly, I was really surprised she was talking in tablespoons! We are trying to get there. Also, she said that there is some evidence that shows MCT has a ghrelin inhibiting effect. This is an awesome thought for PWS as the levels of ghrelin are know to run high. (thought to be a piece of the hyperphasia puzzle or at least a clue)

Starting tomorrow I should be getting close to 2 tablespoons. Here's hoping it goes smoothly.

New Year's Day on the Beach