Poetry by Mckenna

Mckenna wrote this poem at school recently. I think it is pretty awesome.

MJ

Sporty, creative, loving and kind

Sibling of KK, Noah and AJ

Lover of my family, my teacher and peace

Who feels happy when everybody is together and laughing together,

excited when riding a wave, and funny when riding a roller coaster

Who needs my brother, sisters and parents

Who gives laughter, love and care

Who fears losing my family, spiders and falling off my surfboard.

Who would like to see Disney world, me out of school and my mom at my age.

Resident of Pawleys Island

Gulley

Pictures...

This is a quick picture as we arrived at the beach the other day. A nasty storm came and chased us away, but I still think its a cute picture.

Ayden Jane in action. I 'discovered' her up to this tonight after her bath. She was quite pleased with herself as you can see in the next picture! She was trying to run off and hide. She is very into hiding these days and you never know what she'll think of next

Mckenna

This week marks Mckenna's 9th birthday. Amazing. I don't know if it is the addition of Ayden Jane that caused the time warp I feel we lived in for the past couple of years or just my own aging. But WOW has it gone fast!

Mckenna is an awesome kid. She is smart and funny and athletic. She is as strong willed as the day is long, but does not like the spot light and embarrasses easily. She is a great friend and does not like to hurt any ones feelings. Honestly, her best friends are boys. I think sometimes she finds girls too complicated. She would rather play hard outside in the dirt than play inside with a Barbie. (a girl after my own heart) She loves to play soccer, surf, rip stick.... Mckenna is also very creative and has quite an artistic side. She has big dreams and I have no doubt all the gifts to make all of them come true. Mckenna is so great with Ayden Jane. When I get therapy assignments, there is always one I know Mckenna will take over for me. Ayden Jane will do anything for Mckenna!!

We are blessed to have Mckenna for our daughter. I cannot imagine our family without her. Let me go give that kid a big hug!

Iron, Eyes and Weight

I think our pediatrician thinks I am a little nuts, but he agreed to trying the iron supplement. We chatted for a while and he ran down the supplements which I already fooled with to see if it would help. Then the questions about diet, no new ideas there. Probiotics? Agreed we can skip that route for now. He said he had to admit that he had never prescribed iron to solve this particular problem, but that he has lots of experience prescribing it for other reasons and can think of no reason not to give it a try. You have to love that attitude.

Next I asked him about eyes. He tried to ask some specific questions as to my concerns to determine if we should go to the eye clinic in Charleston or see someone locally who could send us if he thinks it is a good idea. I basically told him that there are not even a pair of glasses in our house so I had no idea where to start with this one. We are going to see a guy locally who has a lot of pediatric experience as our place to start. I know that if I want, our pediatrician would send us to the other clinic so sounds like a good first step.

As for weight, she has definitely gone up. She is a bit over 29 lbs, but that just confirms my thoughts that it was finally time to raise the gh. I think we are storing up for a good growth spurt and are now giving her all she needs to spurt. Whew. Ahhh for the old days when raising my other kids. I think my biggest concern was whether they would ever learn to wear shoes.

On Our Way

Well, so far so good. Dr. Clark agreed that bumping Ayden Jane to .5 gh was a good plan. I have an appointment with AJ's pediatrician so we check in on weight and see about getting the iron supplement going. It feels like moving forward which is always a great feeling.

Ayden Jane was doing her usual freezing while swimming today, then she discovered that warm pavement. As she lay there she looked out at the pool and said, "I have a lot of waty (water). That a lot of waty in there." She is pretty sure that the pool was put there just for her to swim in and jump into. Here is a quick picture. I promise more pictures to come!

Catching Up

Well, I have not kept ya'll up on Ayden Jane very well this past week. Let's see if I can recap. We have done quite a bit of swimming. AJ loves jumping in and is jumping farther and farther out into the pool when she leaps. She can hold her breath a long time under water. Okay, I probably should not know that, but she does it on purpose! She has started to try to swim to me from the steps as well as when I push her toward the steps to get out. I finally got her to put on swimmies (which we call muscles) and she can keep herself up with them perfectly. Of course, given the opportunity she pulls them off and jumps in without them.

She is also back to squeezing, clenching, sitting on top of me, wanting to cuddle really close in the am... Just needs that contact with deep input. Note to self to give her a good lotion rub down tomorrow. The swimming seems to really calm it all down... (thus all the swimming we have done this week)

On the other side of the coin, I am thinking about changing two things with her. One will require a phone call with the endo. I return to endo in late June, but I just really feel AJ needs a bump up in gh. She is on a low does, comparatively speaking, but has tested in a good range. So what makes me think it is time? Hard to explain. Her body composition is just slightly changing. She is beginning to look a tiny bit like the pictures I have seen of PWS kids without gh. Sort of like a torso bigger in proportion to the arms and legs than it should be. Or maybe like when you take an aerial view of her, that her limbs just sort of taper off... Last time I went to endo she was basically in a place where she would have considered a bump but did not really recommend it. She suggested that if I felt AJ needed it to call before the next appointment and then we could go up with it and get a check not too long after to make sure it was not too much.

The other thing is I have an appointment with our pediatrician to see about supplementing AJ with iron. Since iron is something that truly can be dosed too high, I want his input and guidance with dosing. So why iron. I am trying to solidify Ayden Jane's poop because it is time to potty train. A few other moms have tried everything else (as I have) and found this to be the charm. It is a somewhat rare problem in PWS as the more common problem is in the opposite direction. Anyway, it would be a welcomed change and would likely be good for AJ as it could be signal that she is actually low iron.

Finally, eyes. We are lucky to have an excellent eye clinic in Charleston (Storm Eye Clinic) in connection with MUSC. I am also going to get our pediatrician to set us up there with an appointment to start keeping good track of AJ's eyes. I haven't seen much to tell me there is a problem, but I want to catch anything as early as I can.

I was hoping to have some fun beach pictures for you tonight, but the storms came and chased us off the beach before I could get any. Next time.

Silly AJ and Therapy

So lately, Ayden Jane thinks it is hysterical to run ahead and get into the room, house... anything with a door and close it so we can not get in. (Okay, we can get in, but we play into it a bit...) It is all a part of her growing love of hiding. She finds interesting places to hide. Anything from lying with her head under a pillow to standing so close to the wall her nose touches. Somehow she thinks this makes her invisible. She also knows how to hide under, behind and on top of things. So far she does not have the patience to hide long so all is well, and she has not transferred this game to times when we are out and about. For that I am grateful. I just love the grin and belly laugh we get as she gets 'found'. Today she extended her game and she climbed up on the bed with Gary and slipped her baby under the pillow. She asked Gary, "Dad, Dad, where baby go?" She giggled with pride as Gary 'looked all over for the baby.' I imagine she plays this game with Mckenna, but it was the first we had heard her pull this one. Very cute.

We also had PT today. Ayden Jane did well, although she was not entirely cooperative. The core is continuing to strengthen and AJ picks up new skills. She is now able to tip toe all over. Just a few weeks ago she could not even stand up on her toes. Weird. She is better standing on one foot and is throwing like a champ. We will pull the 'balance beam' back out tomorrow. I put it away as AJ was going through a bit of a sensory seeking spurt which included trying to do everything way too fast. She was tripping on it in the living room and trying to go down it so fast she was falling off a lot. It seems she is re organizing everything now so maybe she will do great on that too. She sure is back to climbing everything in sight!

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.

Fun at the Beach

Okay, so I will start with an apology. I am not very good at taking my camera with me... Then again, to get to the beach today I had to carry Ayden Jane (or examine every rock, shell, leaf...toddler time) and Mckenna's surf board. Now, even if I had been smart enough to throw it in my back pack with the sunscreen... the chances I would have used it are slim. Why you ask? Because Ayden Jane thinks she can swim to Europe. Okay, so she is really just trying to swim to Mckenna, but either way I would have been forced to choose between her and the camera on several occasions.

All the way to the beach AJ was saying, "I get my piggies wet. I get my toe wet. I not get my face wet. I get my feet wet... I go beach. I go surf with Mckenna." Now this is not as bad as it sounds because we are just a few minutes from the ocean. Once we got there Mckenna went out with her surf board and AJ was content to watch with her 'piggies' in the water, but the ocean was choppy and the current was pretty strong so Mckenna didn't surf long. She came and played with Ayden Jane and, of course, convinced her to get a lot more wet and soon AJ was 'swimming' with Mckenna and jumping on her.

Once Mckenna decided to head back toward deeper waters, Ayden Jane made it clear she was heading out too. I stood behind her and just let her go. Talk about a workout on balance! The current was gradually pushing us north and the ocean floor constantly different under our feet. Ayden Jane just kept inching out into the water. She was hip high and doing great. Sometimes a stronger wave would knock her down, but she could right herself with hands and feet and start heading back out. I did have to pull her back in a few times and she was NOT happy with me when I did. In her mind, she was swimming out to Mckenna and beyond and she wished I would leave her alone. It was hysterical. There were definitely some good pictures to be taken, but alas, next time.

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.

More Ab News

So many things to write about, but I have to be quick. We have continued to work on ab strength this week. Jen taped her belly to somehow make her more aware of the muscles there. Not sure how that works, but I do know the kid is LOUD. She calls it her big sticker and thinks it is marvelous. We have been laughing for a couple days at the difference in volume. When I picked her up from preschool today the first thing they said was, "she sure was louder today." I am not sure if that was considered a good thing or not, but they get excited over everything Ayden Jane does.

So in the past couple of weeks we are jumping off of things, jumping on targets lined in a row, talking more and with ease, she can now get up the 'steps' at the McDonald's play land, and can do every puzzle in the house. We are going to get a bike and start working on peddaling soon and work on jumping over things. She is throwing like a champ and even catches to a point. She dribbles the soccer ball all around and can give it a pretty good kick. I hope to have her swimming farther, standing on one foot longer and walking on her tip toes. Look out preschool Ayden Jane will have the skills to rule the playground.

Wild Woman

What a day with AJ. I wish I knew what combination of events give Ayden Jane a day like today. Let's see, she came off a weekend of hanging out on the sidelines at Mckenna's tournament for 4 games in 2 days. We went swimming 2 times where she should have burned of every bit of energy she would have for the next week. She would jump off the side, yep, a good two footed, full blown leap. I would let her plop in and go down under a fair amount. When I brought her quickly back up she was giggling and chanting, "mo, mo, mo..." I gave her a push to the steps and she would 'swim' and climb out on her own and run to the edge for more. It was actually quite comical as the air was chilly and she would shiver on the side because she was convinced she had to count to ten before she jumped. Now Ayden Jane generally gets the counting thing, but only hits about 6 of the ten numbers as she counts. So there she was on the side shivering trying to count to ten and jump in. She was at it so long I finally decided she needed to stop because it HAD to be tiring.

Monday she went to 'school' and played at the park and helped with the yard work. So, I knew we had horses tonight and a playoff game for my sons soccer team so I figured we'd lay low. Ayden Jane had other plans! She was loud and funny and chattered... We ran errands and cleaned up a bit and then I figured it was nap time since she had a big evening ahead. She played and played in bed until I finally gave up! So off to horses we went. She did not fall asleep in the car and was great and active and talkative the whole time we were there. We went straight from horses to the game where she continued to show off her new jumping skills by jumping off the bottom step on the bleachers one million times! She climbed to the top, ran up and down the ramp and played with rocks. We came home and she actually fought bed time and stayed up until 9. Crazy.

The Road Ahead

Last night I watched the Starkweathers receive a new home on Extreme Makeover... It was hard. I cannot yet imagine living with food under lock and key or with watching sweet Ayden Jane feel the pain of hunger... I look at her now and she is so 'normal'. Seriously, you have to spend quite a bit of time with her to even pick up that there is anything off. Eventually, you catch that she is not really talking or clear in her speech and that she eats a bit funny. But seriously at this point that is were the outward differences end. I know that there are differences inside that will show themselves in time. The only real questions are what aspects of PWS will be her challenges and to what degree.

Reading posts from other families in the same boat and meeting a few of them face to face shows me that this road is so different for all of us. Some kids are on the autism spectrum. Some seek food and deal with hunger more severely. Some tend to wander at night. (and by wander I mean all over town if not caught) Some are very bright and some have cognitive delays. Some even go to college. Some struggle with behavioral problems along the OCD line. Some are more hypotonic (low muscle tone). Some struggle from very young with scoliosis and eye problems. Some deal with sleep apnea and daytime sleepiness which disrupts learning during the day. Some are just so low energy. Some wait for years for the gifts of walking and talking. Some struggle with sensory integration. All live life with therapies and Drs. and working extra hard. Most cannot quite handle life independently. What inspires me the most, though, is that the families that I have met have found a way to meet every challenge thrown at them and their children seem to tackle it all daily with an incredible inner strength.

So, to the future I look with a bit of fear. I wonder if I will be up to the challenge. I wonder what challenges I will be up against.

So, to the future I look with a lot of hope. The research is advancing and there is hope that the hunger can be curbed. Ayden Jane has already proven she will take on any challenge and she has already conquered so much. Our 3 other incredible kids have shown they love her to pieces and are willing to work right along side of her. Gary would go to the ends of the earth to supply all we need for her. She has a safe place to be spoiled rotten, yep, grandma and grandpas house. We live in a community that loves and prays for all of us. We have a God that will carry us when we can no longer carry ourselves.

Yep. We can do this thing. In fact, we can beat this thing! I am starting to get excited about next years marathon and fundraising for the Foundation for Prader Willi Research! Go to www.fpwr.org and check out the incredible research going on right now.

Abs Gallore

I mentioned last week that we came to the conclusion that Ayden Jane had some specific weakness in her abs. Jen could tell you exactly which ones AJ had been avoiding or turned off, but I don't remember. Ayden Jane has strong legs and has (finally) developed a strong shoulder girdle and arms as evidenced by her addiction to hanging on things and climbing. Jen feels that the weakness in the core is causing her to not 'link' the two together as well as she could. Makes sense to me. So what do we do about it? Well, we are trying to kick those muscles into gear with things like sit ups or pulling up her knees when hanging.


It is working. Just one week of adding these things in and she is LOUD again, even when she doesn't really mean to be. She obviously just feels good as she is a ball of energy and is even jumping off the couch onto pillows - new. Her belly is still out a bit which is why we began this process, but I love the progress and hopefully it will help the belly suck in...

We all hit the pool tonight, well, Kayla, Mckenna, AJ and I. It was cold and it was the first outing of the spring. AJ was a bit scared at first and I was shocked. I have never seen her with an actual look of fear. Of course, by the time we left she was swimming back and forth between Kayla and I and laughing at being thrown into the air and being dunked. At least I know it is possible for her to be afraid.

All in all, a great couple of days. Ayden Jane does seem to be heading into another one of her sort of sensory seeking phases though. I have to admit, though, I get excited now when I see it. What does it look like you ask? Going way to fast so falling more, playing with toys for 2 seconds so leaving a disaster in her wake, wanting attention at all times, needs lots of 'big squeezes' and deep pressure, a bit emotionally unstable since more easily frustrated and just plain distracted. What do I think it means? New connections being formed... cannot wait to see the results! If past experience holds true we should see some new skills soon. Maybe our leaping from the sofa is the start!

Rollercoaster

Life generally has a roller coaster feel to it anyway, but when you add in a dose of PWS the peaks and valleys of the ride are just more extreme. Now, I definitely like the peaks, don't get me wrong and over all I would say I am enjoying the ride. Somedays, however, you think you are headed for a peak and find out that you are actually now cascading downward. Sometimes there are reasons for the change in emotions, like you hang out with a friend who's child reminds you that your little one really has a long road ahead. Or it can be a simple as seeing another child on the playground say mean things to a weaker child. You suddenly see your little one as the brunt of jokes or harassment and you get crazy angry or your heart breaks for them. What never ceases to amaze me is that these things hit with such force. I mean, after all, Ayden Jane is doing great and I hear lots of, "she has a problem? I would never have known." You would think there are enough positives for me to just cruise through the lows.

I do love the days though, when out of the blue, Ayden Jane shows me there is no need to worry. She has a great knack for being goofy at just the right time. Of course, maybe that is God's answer to some of your prayers. Thanks.

Fun and Siblings

First of all, some Ayden Jane silliness. It seems like 100 times a day now Ayden Jane does something or says something that just cracks us up. I will spare you 98 or so of them. Last night at Noah's soccer game, Ayden Jane had a bottle of water. Gary asked her very sweetly, "can Daddy have a sip?" Ayden Jane was quiet for a few seconds and then that grin came across her face. She answered, "Momma have a sip," handed me the bottle and giggled with glee.



I have been struck lately with how differently our kids handle having a sister with special needs. Some of the difference is age and some boy vs. girl, but mostly it is just differing personalities. Kayla is our oldest daughter and is 16. She has a wonderfully analytical mind and is okay with anything as long as there is a plan. If things change then a new plan needs to be developed... So for her, information is a good thing. She wants to understand the science behind everything she can with Ayden Jane. I answer all her questions as best as I can as she tries to understand the syndrome and the reasons behind all that we do for Ayden Jane. She is great for me to talk to because she puts up with my excitement over things most people don't even recognize as English. Noah is our only son and has just turned 15. He wants to know if there is something he can do for Ayden Jane or for me to help. As for understanding PWS as a whole, he has no real need and as long as I say I have it under control he is great with that. He lets me know I can ask for his help any time I need, but he is good to leave it there. He is aware there is a plan, but is very happy on a need to know basis. Then there is Mckenna. She is 8 (for a little longer). Mckenna has definitely had the hardest time with all of this. We had some other friends with serious health issues and even a death during the time Mckenna was attempting to process this all. I guess when you are 8 it is hard to find out that there are some things your parents can't fix, that sometimes bad things happen to great people and that sometimes people die even when you pray for them. I am happy to say that Mckenna is returning to her old self these days. She was born our strong willed child, full of confidence and ready to change the world. She cornered me Sunday night as she was going to bed after watching Extreme Makeover Home Edition and saw next weeks preview. (Family who's son has PWS) Let's say she went to bed REALLY late. In the end though, she told me 'they' need to take an x-ray type thing that can see what is going on inside and look at what is different in people with PWS. Then just fix it. I told her that 'they' are sort of doing just that but only with really complicated stuff. Next, she said, "so how can I help solve the problem." Today I found her on the computer writing a paper to read to her class for PWS awareness month. She has a few ideas for fundraisers during next years marathon week. Look out world for this one.

Hanging around

These are a couple of random photos I took on my phone. As you can see stickers and Sadie are two of her favorite things.