Tuesday, May 31, 2011

Food and Singing and Swimming

Things have been a little crazy around here lately. Okay, crazier than usual. Most of that is not related to Ayden Jane, but I will do my best to throw out a few AJ stories from the past week.

First up? Last Sunday we were at church. Ayden Jane leaves for children's church and the nice lady who was escorting and teaching the program does not know Ayden Jane. AJ takes 'guatemala', her little back pack Kayla bought for her on one of her mission trips there, with her snack in it. I told the woman that Ayden Jane could not eat whatever snack they were having and to just let her have the almonds in her back pack. I totally forgot to mention drinks. I returned to discover that the kids had been given lemonade to drink with their snack. AAAAAHHHHH!!!! I asked the woman about Ayden Jane and she told me that, "Ayden Jane said she could not have lemonade because it has sugar in it. She had water." Holy Cow!!!! I was so proud of my little one. What 3 yr. old on the planet turns down lemonade and asks for water?

Next, singing. Ayden Jane has been really into singing lately. She is actually pretty good for a 3 year old, but even if she wasn't it is ridiculously cute to listen to little ones sing. Today's song was her own version of a classic. Yippidee doo da, Yippidee A, my oh my what a beautiful day. Plenty of sunshine gettin' in my way.... I guess it actually makes pretty good sense when the heat index is 105 outside!

Lastly, we have spent most of the past 2 days in water. It is both wonderful and exhausting! In the ocean, she took her maiden voyage into boogie boarding. It was awesome!! I helped her get on her belly on the board and once she was comfortable with the balance I pushed her into the wave. Yes, I dove after her, I am not entirely crazy. She loved it!!! She managed to stay on and ride the wave in. She was hooked! At the pool she attempts to spend as much time under water as on top. She will jump in a swim to me, let go of the pool noodle and swim to me, leave the steps and .... The only problem is that she thinks it is even more fun to do these things when I am not looking!! She was even on the steps the other day and asked me to go get her pool noodle floating out in the water. No sooner did I go one way to get it she took off swimming in another direction! Problem is she can only swim as far as one breath can take her!!

Sunday, May 29, 2011

End of School Wrap Up

It is the end of yet another school year. With one graduating from HS this year, there have been a lot of school years ending!

Kayla is 17 and graduating on Wed. She is amazing. She has worked hard in school and is more than prepared for college. She has managed to pull in enough academic scholarship money to be able to attend Clemson this fall with no loans. Now that is an accomplishment! I have to say that it has been a lesson for me as well. She continued to do daily what she could, both academically and in service to a local after school program. She knows that we have made choices that have kept me home and Gary and I unable to provide much of a college fund. God has blessed her. Here is the evidence. (I consider it evidence rather than coincidence) I looked on line to get the estimated price tag on the year at Clemson and see where we stood with what she had in scholarship and gift from family. Total online estimated? 20,200 Total it looks like she will receive? 20,200! Now I realize that there will be added expenses... but how cool is that!

Noah recently turned 16 and is completing his sophomore year in HS. It has been one of those years that has combined the good the bad and the ugly. You know, a teenage year. He is a great kid with a tremendous future wide open for him. He has a passion for life and I cannot wait to see where he goes in life. He is not sure (ie. has no clue) what he wants to do long term, but is pretty sure he wants a soccer ball at his feet for as long as possible.

Mckenna just turned 10 and is finishing up 4th grade. She has had a GREAT year. She loved her teacher, had a good class and has all around enjoyed this year. Well, with the exception of having to get up early every day... She has developed a love of writing and is discovering her more creative side. Mckenna is a great combination of Kayla and Noah.

Ayden Jane has completed the 2's class. I have pretty well covered that, but I had to include the picture below. Mckenna took it at the end of year program for the school. That's our girl!

Sunday, May 22, 2011

Summer's a Comin'

Yesterday we started the day slow. It was supposed to be a clean/play around the house sort of lazy day. Then I got a call from a friend who was looking for someone to join her and her kids at the beach. It didn't take much convincing! We were sunscreamed (sunscreened) and at the beach between 10:30 and 11. I figured we would play for an hour or two and then go home to rest because Ayden Jane had a birthday party to go to at 3. Well, we left the beach about 2. I figured we could go late or skip the party... We came home and had bit to eat and Ayden Jane was ready to hit the party. Okay, I figured we'd go, and just stay a few minutes 'til AJ started to melt down. We left the party at 5:30!! And that was under protest!!

After we came home we had some supper and went for a walk. I put her bike in the wagon to walk down to the 'smooth road'. AJ pulled the wagon most of the way, rode her bike a good amount (3/4 of a mile?) and then sprinted down the road so far I had to send Mckenna after her on her roller blades! She did not finally give in to sleep until 9 pm. I love it that she has so much energy, but it is going to be one long summer if I have to provide that much activity every day!!!

I have to say, the birthday party was interesting for me. A couple of HUGE accomplishments. First of all, I had some great conversations with the other mom's. I know a few and have chatted PWS with them early in the year. I was nervous then and had no idea if the way I planned to handle snacks, parties, friendships, school, even life for AJ at that point was going to work. I had the chance to talk to several mom's who were previously unaware of Ayden Jane's diagnosis. They had heard their children talk about AJ, had seen her in class... and had NO idea there was anything different about her. Now that is a compliment! They had heard of 'allergies' that AJ has or something like that so I filled them in. I have to say they are amazing! It is not really grand conversation to listen to me drone on about PWS but they were so genuinely interested in her. It strikes me how different it is now to talk of PWS. I used to feel the need to tell people to keep AJ safe or something like that. I guess out of my own fears. It almost panicked me in the past if people felt she did not seem any different because I just knew (or so I felt) that one wrong move from a well meaning but unknowing adult would somehow make her explode or ruin all we had worked so hard for. Sounds silly now, but I imagine some of you know exactly the feeling I had. Yesterday, it was different. I had no panic, no desperation. Just great conversation.

The second amazing thing at the party was AJ. She had to be exhausted, but she did not melt down at all. She was not terribly interested in jumping in the baby pools... but, of course, had been at the beach for hours before hand. She got on the swings and pumped her little heart out though. The amazing part comes in the food category. There were a couple of tables of food, none of which Ayden Jane could eat. Just as you would expect at a kids birthday party, all crackers, chips, gold fish... and 2 birthday cakes. Ayden Jane did not even look twice at the table. She came and asked me for nuts, she knows I always have something for her, and I gave her a little bowl of pistachios I had in the back pack. She climbed up in a chair and ate them while everyone else had cake, ice cream and ice cream cones. She was thrilled with a bit of diet coke and then went and played some more. More than I could have ever dreamed!!

Now for a few funny AJ stories. She loves the flowers we planted. She has been soooo patient waiting for them to grow. She went out front the other day and a minute or two later I went out to check on her. She was sitting next to the flower sprouts. I asked her what she was doing and she told me, "I just watching my flowers grow. It a little frustrating."

Today, I had quite the argument with AJ. She was again, out front playing with Sadie, watering her flowers.... Next thing I know she comes in and is getting Mckenna to take off her shirt. I was not really paying attention and just sort of assumed that she had gotten wet watering the flowers. I then 'tuned in' and realized that AJ had no pants on! I asked her where they were and she told me they were in the front yard. When I went out, sure enough, not outside by the house, but way out in the front yard were her shoes, pants and underwear. I told her she could not go outside with no clothes on. She informed me that she wanted to jump in the sprinkler and did not want her clothes to get wet. I told her she could play in her 'big girls' and shirt or her bathing suit but she had to have something on. She protested greatly that she did not want to get those things wet because they did not feel good wet. She just wanted to go nakey! I knew better than to cave on this one or we would be spending the entire summer that way! It would get a little embarrassing at church and the grocery store...

Friday, May 20, 2011

Catching Up

Hang with me on this post. I have had about 100 things go through my head lately that I wanted to write about and I have no idea what order they will come out in!

Here is a cute one to start with. The last day of school for AJ a friend in her class gave all the kids a gift. It was a simple plastic cup with a piece of chalk, a little toy and a blow pop in it. I just happened to be there a bit early so I was there when she discovered it above her hook. She took one look into the cup and said, "look Mom I got a toy for me and candy for Mckenna! Can I give it to her when we get home?" I could have cried to see that she genuinely never even considered that she might eat the candy and that she was genuinely so happy for Mckenna.

Next up, still about food. Guess there is no escaping that... So, if you have followed for a while, you know that AJ does not eat grains or sugar. We do not, however, require the other 3 kids to follow that rule. Now, I am not saying that they sit around and flaunt a cookie or cupcake in front of her or anything, but they don't hide out in the other room either. It has happened over time, not planned, just happened, that I am sort of AJ's ally. I didn't even realize it was happening and then at dinner the other night I heard it straight from Ayden Jane. "Noah, you eatin' bread with supper? Momma and I don't eat bread." And another time when one of them had some candy, "Is that candy? Momma and I don't eat candy." Hmmmm. It does make sense that she is comfortable with an ally at her side. For the record, I do not stick to those rules after AJ's bed time, but I am happy to eat like AJ and be her ally when she is around.

Carnitine. I am happy with the increase so far. Ayden Jane has had a nasty cold so it has been a bit difficult to judge things like sleeping well through the night... but I know that she has been mentally quicker. Jen even noticed it right off when she came Wed. Her body does not yet respond fast enough to her quicker brain so she has trouble with running into things a bit and no patience for slowing down and improving quality of movement. I don't think that is necessarily a bad thing, just a temporary side effect that she will overcome. For example, after swimming tonight she sat quietly worked a fine motor activity independently she has never been able to do well with help. It just took a lot of energy release and deep sensory input to prep her.

I will try to do better, but with Kayla graduating and Mckenna's birthday on the horizon it will be a challenge.

Monday, May 16, 2011


Such a great day. I love our preschool for so many things. This is just one of the things that shows their heart. They do a trike-a-thon for St. Jude's Research Hospital. They make a big day of it for the kids, setting up a track to ride around, the fire trucks come a spray them, the coast guard brought a boat, police help direct 'bike traffic' and cheer the kids on, face painting... it was a great day. Here are the pictures!

At the start! Ready set RIDE!

Rounding the turn...

Kayla at her side, she can keep going!

So proud of herself.

Well done Ayden Jane!!

Hanging out after the hard work was done.

Just for fun.

Saturday, May 14, 2011

Looking Back

Yesterday Ayden Jane took part in a trike-a-thon to raise funds for St. Judes Hospital. It was priceless!! Yes, we took lots of pictures and video but with Kayla's camera. So, I will stop talking about it until I can get her to get them downloaded.

The whole day/experience and the ending of AJ's first school year just made me think back. This time last year Ayden Jane did not really talk much, certainly not to people she didn't know. She had started in the mom's morning out program a couple of days a week, and it was going well, but I was definitely still stressed about how this whole school thing would go. I mean AJ liked the couple of days she went, but the thought of her sitting in circle and paying attention and playing with the other kids almost seemed far fetched.

She was still tiny and did not stand up for herself much. Mostly, when in a group of active kids she just watched. I know that even just watching was good for her as she was really just sort of taking it all in, but I longed for her to participate. I guess part of me knew what was in her and wanted every one else to see it too and not sell her short! She was really the kid that could easily be overlooked but desperately needed encouragement.

This time last year, going back to work seemed improbable. AJ just needed more time. There just seemed too much PWS in our lives for there to be room for much else.

Now, Ayden Jane does not stop talking. She can get a bit repetitive, but really is more and more truly conversational all the time. She talks to most anyone. She has friends in her class at school. She loves to name all the friends in her class and who got in trouble that day and who she played with on the playground... just like my others did. She occasionally gets into trouble, but those times have been few and far between. She loves the stories in circle and has learned so many things! Letters, numbers, colors, shapes.... She has been a sponge.

As the year has gone on, I am told by her teachers that she is participating in the group activities with ease now. She is much better at keeping up when songs have motions or do things quickly. She is proud of her little art projects and just loves school. (it is going to be missed this summer!)

I am ready to return to work. Doing what? Well, I guess we will see what comes along this fall. I just know that Ayden Jane is ready, St. Peter's is on top of all things Ayden Jane and I am thrilled that each day no longer seems consumed with PWS. Don't get me wrong, there is always a part of me that is pws radar switched on, but it finally seems that the PWS radar can run in the background now. I am ready for some other things to take center stage. What you ask? I have no idea, but I am excited to see what comes along.

Tuesday, May 10, 2011

Mother's Day Poem by Mckenna

This is a poem Mckenna wrote for me on a Mother's Day card.

You are caring and intelligent.
You wonder ... what do I have to do today?
You hear ... baby screaming, TV blasting, kids asking!
You see ... physical therapists, curious George, soccer and babydolls.
You want ... some peace and quiet.

You are caring and intelligent
You pretend ... you have nothing to do.
You believe ... in the Lord God our Father
You touch ... everything in the home
You feel ... that you can do anything
You worry ... will I get everything done?
You cry ... when other people get hurt.
You understand ... that nobody is perfect.

I am both honored by her words and amazed by the depth in which Mckenna sees into people. She is one incredible kid!!

Monday, May 9, 2011

Carnitine continued

So we arrived at a plan to increase the carnitine and change the form a bit. We are going to switch from using only the pure carnitine fumarate to including this: http://www.iherb.com/Jarrow-Formulas-CarnitAll-600-90-Veggie-Caps/4330?at=0 It is Jarrow's CarnitAll. This is a capsule form with several forms... in it all ready. Part of me wanted to use separate ones to see the response from different forms... but I am not sure how well I would be able to piece it out at this point anyway so I am just going to hit this pathway from all sides.

Supplement Facts
Serving Size: 3 Capsules
Servings Per Container: 30
Amount Per Serving%DV
L-Carnitine Fumarate600 mg*
L-Carnitine350 mg
Fumaric Acid250 mg
Acetyl-L-Carnitine Arginate dihydrochloride200 mg*
Acetyl-L-Carnitine90 mg
Arginine80 mg
GPLC (Glycine Propionyl-L-Carnitine)200 mg*
Propionyl-L-Carnitine132 mg
Glycine46 mg
Chloride22 mg
Acetyl-L-Carnitine Taurinate hydrochloride200 mg*
111 mg
Taurine69 mg
Hydrochloride20 mg
* Daily Value not established.

So far I have just used the same form and raised the dosage from 500mg to 750mg per day. The bump in gh and iron was also settling in and I must say AJ was WILD. She has now sort of settled in and is no longer spilling, tripping on things or running into things constantly. Hooray for Body awareness! Ayden Jane even walked fast and ran a good portion of a 'walk' tonight. We always take the wagon and AJ walks some, runs some and rides. Tonight she ran ahead of me and pulled the wagon for the better part of a half mile!

I have found that I need to give her the second dose of carnitine before 4 pm or she does not sleep well. Yes, lesson learned the hard way.

Phase 2 of the master plan begins today as we start to switch to/add in the new form. I figure it will take about a week to switch over and get things balanced where I want them. Okay, maybe longer but hopefully not too long. It will just depend on how AJ handles the change in her system. She has always reacted to changes/increases with a bit of wild or out of control behavior. I think I see myself giving her half a capsule of each, Carnitine Fumarate and CarnitALL, morning and afternoon. That will give her the full 500 mg of CF daily from that capsule plus about 200 from the new capsule (keeping her at 700 daily). All the other forms will be added in a low dose.

Friday, May 6, 2011

Funny Stuff

I am so far behind and I truly have things I want to address, but it has been the sort of week that just requires comic relief. For once it is not PWS that I need comic relief from, but Ayden Jane has been a grand source of the comedy.

Today. As part of my mother's day gift from Ayden Jane (preschool) she gave me a packet of flower seeds. The whole flower theme was adorable and AJ was so excited that we absolutely HAD to go immediately and get some 'dirt' to plant them in and find the perfect spot. On the way AJ started to remove her shoes. Again. I told her she had to have shoes on to go in and get the dirt with me but she told me her feet were too itchy. One shoe and sock now off... I tried again telling her that she could take her shoes off after we got the dirt, but that the hardware store had tools and things that made it unsafe without shoes. Ayden Jane just told me, "it's okay Mommy, you can just go through the drive through to get the dirt and I won't need shoes." Where does she come up with this?

Yesterday. Noah was headed to soccer training. He asked AJ for a hug before he left and she told him she didn't have any more. (she pretends she has to buy them at walmart) She said she would get some more and give him one when he came back. About 3 hours later Noah returned and Ayden Jane ran to him with arms open wide yelling, "Noah, I have more hugs for you!"

Questions. Ayden Jane used to drive me crazy with the same questions over and over. Now she is driving me crazy with much harder to answer questions. Let's see, "why God made me?" Obviously she did not have deep theological meaning behind this, but if she only knew where this question takes me!? That is a whole other post. How about, "why the sky blue?" Or, "why is sugar bad for me?" Or maybe, "how many animals there are?" Just try answering with I don't know and she will ask, of course, "why you don't know?" When AJ gets tired she avoids sleep by talking/questioning. If we are in the car and it is quiet, Ayden Jane FINALLY fell asleep.

I will get back to carnitine and PWS yuck another day. Today I just need to enjoy the funny stuff.