Sunday, August 28, 2011

Bee's Three's

I have been meaning to write about the first week of school. A few things (remodeling, hurricane...) have kept me from being able to focus. I guess it is just hard to explain so every time I started, well, I stared at the computer and then worked on something else.

It starts more with the day before school. It is the first I have seen Ayden Jane get nervous or anxious or whatever. In some ways it was really cute because it was totally in anticipation of something great. Some of the ways it showed up, though, made me a little nuts.

First there was the crying. AJ is not usually a big crier. I think she cried more in 3 days than she did in the first 3 years. It was just evidence that she was emotionally on the edge of the cliff and any little thing could send her hurdling over. Normally when she gets upset enough to cry it is pretty short lived. You guessed it. She managed to cry so long she forgot what she was crying about. It was pretty funny when I asked her, with admittedly a bit of frustration in my voice, why she was crying and she just blurted out, I don't know!

Secondly, she she she she is stuttering bad. It's likely not a true stutter. Often times she will repeat 5 or 6 words in a long thought several times until she can finish it. Here is an example, "after grandma and grandpa come to my house can we go to the beach and to the pool?" That's what she FINALLY says. Usually she will get stuck at a point like this, "after grandma and grandpa go, after grandma and grandpa come, after grandma and grandpa come to my house, we we we , after grandma and grandpa come to my house we can go to the beach and to the pool" Helping only results in starting the process over....

Thirdly, independence rules. I am quite sure that independence is a positive way of looking at the need to control. This becomes evident when she is stressed. Open a door to a store? She will do it. Touch the door and she will close it and start over. She wants to pour the milk, carry EVERYTHING, get in her car seat herself in HER time frame, choose who does things for her she can't like get the bath ready... The list definitely goes on.

Definite temper tantrums. Pretty sure they were more mild than the ones I wanted to have though!

Yes, it carried it's way into school. Absolute melt down because we sent in extra clothes. "I a big girl. I NOT have accidents. I don't need to bring clothes!" Tears, no consoling, completely heart broken that the school could not comprehend she was a big girl... I tried lots of things to help her not take it as a personal attack. All the kids have to, its just a rule, it is in case you spill paint or something on you... Nothing helped. Then I got smart. The extra clothes are in case the clothes you wear get itchy and you need new ones. BINGO. She bought it. Another melt down as she had to hold the teacher's hand coming down the steps. It's a rule. Every kid holds the teachers hand... "but I a big girl. I can do it myself, I won't fall...."

When we asked about school afterwards she just couldn't tell us much. Not a big surprise. I know her receptive skills are in over drive. Each morning though she was soooo excited to go. She was non stop talk and motion in the evenings after school because of all the input she received at school. I don't know what I would have done with her without the pool! Amazing how just swimming it out helped calm everything. Words came better, she could focus for more that 2 seconds, she was just calm. Sort of like the disorganized storm inside had all calmed and she was back in control of her little body. By day 3 things were much improved.

Tomorrow starts a new week and a 5 day one at that. Wish us luck!

Friday, August 26, 2011

Whew!

You might think I am referring to the passing by of hurricane Irene, but not so much. The hurricane went north of us just dumping us with lots of water and a bit of wind. Thankful to be spared this one. It did make me think about the need for some real emergency plans with Ayden Jane and the need to have supplements, foods she can eat, gh.... Definitely need a really good cooler in case the power goes out!

What really has me happy to sit for a minute, however, is the room painting/rearranging. I absolutely LOVE Ayden Jane's room. She is so happy to have her own (okay, any) room. It was adorable today to watch and listen to her as she happily gathered her belongings from the living room and settled herself in the bedroom. "I love my new room Mom" So sweet.

Kayla and Mckenna now share a room. My mom took us shopping and we found some great bookself/cubby type things at Home Depot. They came with fun colored bins to mix and match. We used those to move Mckenna into Kayla's room. She is mostly settled and it all fits pretty well. Hopefully it will still fit well when Kayla comes home from college!

Noah's room got a good cleaning and a bit of painting. He is still unsure of just what he wants to do in there but I am sure his creative side will come up with something.

Gary and will shortly have a room to ourselves!! Yippee! I still have a lot to do in our room including moving all of Ayden Jane's clothes... into her new room but I can just feel the space about to expand.

The only part I am a bit concerned about is what Ayden Jane will do if she wakes up at night. I think Gary and I will have to sleep with the door open and I definitely need to get a baby gate (that is easier to maneuver than our current one) to put across the hallway. Basically, we have one hallway back to all the bedrooms so I figure as long as we block it off, Ayden Jane will have to get one of us up if she needs anything.

I guess like everything else in PWS, with independence come some dangers. You know like the fact that she already fell from the top bunk in her new room today and climbed the new cubbies and tipped them on herself. Uggg.

Wednesday, August 24, 2011

School's Back!!

Ayden Jane returned to school this week. She is in the 3 yr old preschool class at St. Peter's, the same preschool she attended last year. It is a wonderful place and AJ loves it. It has been interesting though...

I think that the newness is just a lot for Ayden Jane to handle. She is doing really well, according to her teacher, and is ridiculously excited to go to school in the mornings. She has been really CRAZY in the evenings this week though. I am thinking there is just so much new input coming at her during the day, she just cannot process it all. Luckily swimming seems to be doing the trick and has really settled her down.

We painted her room today! She is finally getting a bedroom. When we asked her what color she wanted her room to be she answered loud and without hesitation, "purple.... and a lot of colors." So, purple it is and we will look for some wall decals or stencils to add other colors. I am thinking daisies and butterflies... I will post some pictures when we are done.

Saturday, August 20, 2011

Endocrinology

A few days ago Ayden Jane had an appointment with our 'local' endocrinologist Dr. Clark. It is a 2 hour drive so I am not so sure how local she is, but she is definitely worth the trip.

Ayden Jane was a bit grumpy by the time we got to talk to Dr. Clark, but that did not keep her from doing great. She grew a HUGE amount since our last visit in Feb. She measured 41". Her height percentile has gone up to 80th which I would guess places her about where she would be if she were non PWS. The other 3 kids were 85th and above percentile kids. As for weight, she weighed in at 37 1/2 pounds. That places her around the 60th percentile for weight. Her BMI was (15?) and places her around the 45th percentile. I'd say pretty awesome for a kid with PWS!

She asked about her motor skills and it was exciting to be able to say she swims, rides a bike, swings by herself...

Speech is great in the vocabulary portion, but we talked about some of the articulation issues and the occasional stuttering. Things that the impending return to speech will hopefully get back in line.

I described the sensory piece we still definitely see...

We talked fine motor and the challenges ahead with handwriting, cutting...

We talked about whether or not to check IGF 1 levels and decided it was not necessary now, but to call her and let her know when I felt it was time. I usually 'see' the need to bump gh in Ayden Jane when it is time. Dr. Clark explained the importance of bone age. I assumed they checked it to be sure gh is dosed correctly. I asked her about it (it was done in April and AJ's was perfect) and learned that part of the trouble with added weight is that it can cause the bones to age early and therefore close the growth plates sooner. This, of course, results in stopping the growth early.

We talked about the iron and the B12 and the other supplements and what I think I see from them.

She asked why I thought AJ was doing so great. Did I think it was the diet, the supplements, therapies, something else... In the end, I am thinking it is all of the above. There is benefit from each piece that we are doing. Then there is the genetics underlying all of these things. So, I would say that Ayden Jane has a genetic make up that would likely have been very lean and athletic and high metabolism (that is my body type). Add on top of that giving her foods that her body is good at using and the supplement support. Add the iron and B12 to smooth out some of the neurology and she gets pretty close to typical development. The amazing thing to me is how tenuous the balance can be at times. Lack of exercise and she is crazy, the wrong food and she is spacey, lack of supplements and the "PWS pause" comes back and she just cannot think or react quickly.... Stop therapy like speech this summer and we slide backwards. The list goes on.

I have to say, I love how much the current package is helping her but I sure hope that some of the incredible research out there will make it a whole lot easier to maintain that balance and give us a little wiggle room.

Sunday, August 14, 2011

Hope in the Little Things

Hope for the future can be seen in the little things.

This morning Ayden Jane and I went to church. She headed to a preschool class for 3 year olds. As usual, I noted on her name tag, "no goldfish" and found the teacher to show her Ayden Jane's little backpack with snack. They pretty well know the drill, but I always reinforce. Then, toward the end of the service, I was in a hallway (yes, not actually in the service but that's irrelevant, lol.) and could see the playground out the window. Ayden Jane was on the swings with five other 3 and 4 yr. olds. She was swinging away, grinning ear to ear and obviously singing. Most of the other kids needed to be pushed... and AJ was flying high. Then she stopped and went to climb and slide and walk the balance beam. She was so happy and just fit right in with all the other kids. It was the sort of scene a mom of a special needs kid dreams of.

After church we went to Habaneros for lunch. It was Kayla's birthday and we had not planned to celebrate 'til Thursday, but Gary's schedule... Anyway, we got AJ a grilled chicken fajita quesadilla. Basically, a soft, slightly doughy tortilla with grilled chicken, green peppers and onions. There were chips and queso on the table and AJ never once asked for one. Then when her food came I just gave her the plate. Usually AJ shares with us and we give her a plate with bits from everybody. In that case there is nothing she cannot eat on the plate. Ayden Jane opened the quesadilla and began to eat the peppers and things with a fork. She cleared it out and then said, "I all done, I don't eat the bread mom. Wow, my belly is full!"

I think I will have pleasant dreams tonight.

Saturday, August 13, 2011

22 Years

Yep. Yesterday marked our 22nd anniversary. We did not really celebrate, but we will eventually. Just sooooo much going on right now. Gary will work through Monday night then he is off until the following Sunday. During that time we will get Kayla off to college, celebrate her 18th birthday and the 3 other kids will start the new school year. We are 'giving' each other a major spring cleaning, bedroom (at least something in all 4) redoing, closet cleaning out, we have been in one house long enough that we need to throw half of what we own out sort of 2 weeks.

I am so excited. I keep threatening to rent a dumpster and fill it! Don't get me wrong, most of what we own is second hand... so it is not do to over shopping. We have just spent so many years just getting by and collecting, well, things others no longer had use for but we were thankful for. We have been in this house for 15 of those 22 years and I think there are closets I have not seen the back of since we moved in. YIKES!!

Anyway, the cleaning house includes Ayden Jane getting a room of her own. I am not sure if she or I am more excited! Okay, I admit it. I am more excited. She has been sleeping in our room, which is not really a problem, but her toys are EVERYWHERE throughout the house. Ayden Jane is also ready to have a place to play. She disappears into Mckenna's room from time to time now, but I am thinking when it is all hers she will really love it. Mckenna and Kayla will share a room, but with Kayla away at college it shouldn't be too tough on either of them.

So, 22 years of marriage and we have one who has successfully made it to adulthood, one in the throws of teenage years, one preteen and little AJ heading off to 3 year old preschool. Yes, you may laugh now. Looking back, I can remember the days before kids, with our 2 little ones, then as they grew and we added sweet Mckenna. It seems both so long ago and yet just yesterday. Now, with our home full to the brim with entertainment, energy, love... it is hard to imagine life having taken any other path. Here's to a wild ride of the first 22 yrs. Hopefully the next 22+ will be as filled with good times, blessings and laughter. I'm happy to skip the heart ache, but willing to accept it as part of the ride and thrilled to know that our little family will hold tight to God and each other and triumph through it whatever comes our way.

Friday, August 12, 2011

Will Sugar Break Me?

Ayden Jane has been asking a lot of food questions lately. Not in a hyperphasia sort of way, in a very appropriate sort of way. She is just really curious about why she cannot eat sugar or bread... and some people can. We talk a lot of how we eat food to make us grow strong and healthy, and sugar and bread does not make her grow strong and healthy. So, the other day she asked me, "will sugar break me?"

Hmmm. Tricky question to answer. In a way, those things would 'break' her if given frequently... I, on one hand, don't want to feed into the anxiety that is often part of PWS and have her flip out if she gets a dose of sugar. I also don't want her to have a cookie, not explode and then decide that all she has been told is a lie. It's just not that simple. I have seen the effects carbs from grains and sugar have caused. She becomes slower. Slower thinking, slower moving, just over all slower processing. (of course, she has only had a dose of these on rare occasions). Then that question is followed up by, "will sugar break Mckenna?"

So, what do I say? I told her that those things would not 'break' her, but they would not make her feel good. That she would not be able to run, jump, think or talk as well. That she would not have as much energy. I feel bad, but there is a part of me that hopes she feels awful the first time she sneaks a cookie! We talk about how she eats, including the fact that she has to eat a few bites of something with protein. There are still times that I have to insist she eat! I am glad about them and use them to teach the need to keep our brain and bodies fueled. She gets it. The other day she came and told me, "my belly isn't hungry but my brain needs a snack." We talk about food that will make her brain and body work best.

We also talk about learning to say our words better and getting new 'yellows' (orthotics) for her shoes to help her legs grow strong and make her run fast. I still have not used the term PWS to explain why all these things apply to her, but no one else. For now, she accepts that mom says that's the way she is made. The time is coming but I hope that when it comes, it will just be a name for what she already understands about herself. She is daily understanding that food is for fuel, exercise is necessary for fun and for feeling good, working hard at things means mountains can be climbed, family will be there every step of the way, supplements and shots are just a part of life like brushing your teeth... and a host of others.

Definitely wondering how that conversation will go. I am sure as she grows she will go through times where she accepts PWS and times where she sort of rebels against it. I just don't want her to ever let it define her. She is Ayden Jane, a unique, funny, high spirited little girl. That is what she will always be first. I want PWS to just be a foot note in her life. You know, by the way, she eats a little funny because of this thing called PWS.

Sunday, August 7, 2011

Big Changes on the Horizon

The big change in our household is Kayla heading off to Clemson. She leaves in two weeks and we are all excited for her. It will be interesting to see how Ayden Jane grasps the concept. Kayla has sort of been preparing all of us this summer by staying quite busy and not being home too much. LOL. The last time she came home after spending the night with a friend, Ayden Jane asked her all excited, you come home from Clemson?!

Ayden Jane knows that Kayla is going, but it is hard to grasp the time frame. You know, it's not like she has great calendar skills yet! So today when she was asking Kayla about it again, I told her Kayla would be coming home when Christmas comes. Of course, she will be home before that and I will likely have to explain why it is not Christmas yet, but it was the only way I could think of to get Ayden Jane to think longer term!

For the past 2 years, Kayla has been driving and Kayla and Noah have been sort of taking care of each other. They had their own transportation and each other to go and do with when I have been off to horses or at Mckenna's soccer... It will be great for Noah to be able to have the car and get where he needs to go, but it will be a bit sad that he will not have Kayla to do much of it with. As a parent, it has been a pleasure to watch them grow up together and cheer each other on. They are siblings, so it is not all joy, but they do get along amazingly well. At Kayla's volleyball games, Noah was always her biggest fan. Kayla made sure Noah got out of the house on time for school... They can surf together for hours, literally. Today they were in the ocean from about 8:30 am to 5 pm. The only reason they came out was because they knew they were expected at Grandmas for supper! Their personalities are opposite but they bring out the best in each other.

Big change 2 is that Noah will be getting his license soon. The car will be his and he will have a lot of responsibility on his shoulders. I head out the door in the morning with the little ones to get them to school and he will have to get himself out of bed (and not fall back in after I leave) and get to school. He will will be driving... He will be on his own at times and other times he will need to take charge of Mckenna or AJ or errands. It is Noah that we will be visiting colleges for... He is ready, but it is still a big change.

New teachers and classes for Mckenna and Ayden Jane. The big change for them, however, it that we will be rearranging bedrooms!!! More on that in the coming weeks.

Saturday, August 6, 2011

Feet

So, school is starting soon and that means it may be possible to get a pair of shoes on Ayden Jane. Last years shoes are finally too small. I know, count the blessings of PWS as they come and not going through tons of shoes could be one of them. It is, however, time to get some new shoes to head back to school in. After all, they do require them....

Her old shoes, affectionately known as her 'jump highers', have an orthotic. I am not exactly sure if there is a name for her particular one, but we had Mr. Alan custom make them for her feet. I pulled them out and asked Jen, our PT (life saver), if we were going to continue with them, get new ones or if we might possibly be done with them?

Jen had Ayden Jane stand barefoot (as she always is...) without them and then stand in them. Ayden Jane definitely supinates (sp?) her right foot and pronates her left foot without them. Not horribly, but enough to benefit from some correction. When Jen had her stand in her orthotics, she felt that the supination was corrected well, but the pronation definitely needs more support. Ayden Jane has broken down the old ones in that area...

End result? We have an appointment with Mr. Alan on Tues. to see what he thinks. He may be able to sort of rebuild the old ones, or he may make molds for some brand new ones. Either way, Jen is thinking this will be her last pair! Yay. The really nice thing is that Ayden Jane is only to wear them part of the day so that she can continue to work the intrinsic muscles in her foot. Soooo, wear them to school from 9-12 and then maybe for a bit in the evening. No pressure and naturally an easy balance of shoes and barefoot.

Friday, August 5, 2011

Swimming Fun

Well, this pretty much sums up half of our summer. The other half has been at the beach! I will do my best to get some video of that as well.

In this clip, Ayden Jane is swimming away from Mckenna who is 'it'. It is AJ's version of sharks and minnows... Ayden Jane is so proud of the fact that she can swim in the 'deep deep' (9 ft.) that I think she wears everyone out swimming back and forth. It is too cute when all the kids are in playing games and she is so sure she is playing too.

video

Wednesday, August 3, 2011

Pictures from our Trip - Thanks Kayla

It was a looong car ride, but Ayden Jane was great.


The back seat got a bit crazy at times:)


But generally found ways to keep entertained.


There was lots of time in Texas to play with big brother Noah.


Yes, Ayden Jane LOVES this and no one can launch her like Noah. (Look close and you can see Mckenna's legs)


Love this picture!


And Noah loves his baby sister





Kayla and Ayden Jane taking their own pictures. So that's how the photographer gets in the picture!




And oh, so much swimming fun thanks to Uncle Ken's hard work on the pool.




Tuesday, August 2, 2011

What DO you say?

This has been on my mind for a long time, but I have had a hard time finding words. Well, words that don't sound a bit mean or something. Recent tragedy in the life of good friends just brings it to the point where I just have to try.

Rotten things happen. Sometimes, life sucks. The unthinkable becomes reality from time to time. No one gets a free pass, but in most cases we find ourselves on the end of wanting to help the person in crisis but having no clue what to say or do. I know that's the case for me anyway. I am, quite frankly, not good with words. Well, words, in person, when emotions are involved I am just plain horrible with. I do not have the gift of coming along side and comforting.

When Ayden Jane was born and then even more so when diagnosed, well meaning people shared their sincere words of compassion.... They landed, often, on my heart as well intended but entirely irritating. Sorry, I am not trying to offend, but honestly, if one more person told me that it was because Gary and I were such great parents that God chose us for the responsibility of AJ, it was going to get ugly. Another favorite, we were perfect for her because I was a special needs teacher. Then there is always the, "just be glad it isn't worse."

I could go on, but the point of this is to try to offer insights from someone who has had the unthinkable happen. First of all, in the case of rare genetic disorders or I would presume any illness, take the time to learn. It is such a relief to talk to anyone who has a clue what I am dealing with.

The second biggest thing is that I loved the offers of help. Problem was that most of them came in the form of, "tell me if there is anything I can do." But when I was in crisis, I didn't really even know how to ask. You just get through each day one moment and a time and asking for help requires planning which you just don't have the energy for.

So, hopefully I have not offended anyone of the awesome people that were here to help us. Just wanted folks to know to spare a few the platitudes and allow your friends to feel life stinks. Make your words let them know that you agree life stinks and you will walk the rough road with them, long term. And, probably more near and dear to my heart, be specific in your offers for help. When a friend is in crisis you may be able to see needs that will come better than they. They are in day to day mode. Don't say, "I would be glad to bring a meal sometime, just let me know." Say, "for the next month I will bring you a meal every Wed." Call when on the way to the store and ask if there are a few items you can get for them, then pick up a few extra things just because. Don't tell them to call you if they need someone to watch the kids, tell them that you are free on Thursdays and would love to have little Johnny come swim with you. Tell them Monday is laundry day so you will be by to pick up a few laundry baskets... You get the picture.