Tuesday, August 31, 2010

Hippotherapy and Eyes

Mckenna came to horses tonight and she loves to take pictures. She got a few cute ones. The puzzle piece border is just a little bonus from Mckenna

Here Ayden Jane is showing off her skills at riding backwards.

Yep, Ayden Jane loves to live on the edge. Here she is showing off her tricks for the camera.

We also had a check on her eyes. The doc gives her a good report. She is apparently slightly far-sighted which is perfectly normal for her age. He says no need to see her for a year. Sounds good to me.

Sunday, August 29, 2010


Well, you would think by our 4th child we would be well acquainted with stitches. Amazingly enough, we headed to the ER last night for our first set. Yep. Ayden Jane again opens new worlds to us.

It was actually a 'typical' accident. She was fresh out of the shower and wrapped in her towel. Down she went on the bathroom tile. She split open underneath her chin and it required 4 stitches. Now for the odd Ayden Jane part. We had trouble about a year and a half ago (18 months of age?) with this same thing. When Ayden Jane was learning to walk she would fall, frequently, and had poor reaction time to 'catch' herself. As a result she hit her head. A lot. When she would hit pretty hard, she would breathe in and then hold it... and hold it... She would turn pale as a ghost and nearly pass out then finally breathe. At that age it would take a long while to come completely back to life, but she would recover and be off ready to fall again.

It has not happened in a long time. Then again, Ayden Jane has developed pretty quick reflexes and is able to react to a fall and protect her face... Last night was a hard hit and she again held her breath for a seemingly endless time. Gary blew in her face, tapped her... all the things he could think of to get her to respond and nothing. Finally as she was about to pass out, air. What did surprise me was that it wasn't but a couple of minutes and AJ was talking and goofy and wanted to get down and walk around and seemed fully recovered. (Then realized it hurt and wanted to cuddle) Now I am not sure that the breath holding is PWS as our son went through a similar bout when he was about 4-5. He turned blue and did actually pass out so it is different somehow.

Then it was off to the hospital. Ayden Jane was awesome. It is was a little too obvious, however, that she is right at home in the hospital setting. As they were stitching her up, they actually had to tell her to stop talking! Yep. Not screaming or crying... She was just concerned that they would forget to give her stickers when it was over and she felt the need to tell the doctor, "that hurt my chin," each time she put a stitch in. Crazy kid.

Friday, August 27, 2010


Ayden Jane is not typical of kids with PWS in that she has NO lack of energy. What I find instead is that she is incredibly challenging when she does not have a chance to get that energy out. Swimming has been our survival skill of the summer. I believe that it is energy release plus somehow calming to her nervous system.

I know, it sounds like every two year old you've ever met. There is a difference though. When Ayden Jane gets in this over active/stimulated mode, she pushes things too far. I cannot tell yet if she can control some of it or not, but what I do know is that direct confrontation is NOT the answer.

The latest part is a direct, "No" or yelling at me. It is willful. She will push to the complete limit every time. If she is warned it will tone down, but she will look you in the eye and test. When punished, she will look you in the eye and test again. This does not happen often and always ends up with Ayden Jane in a room to herself until she regains control. It also only happens when she is not given enough swimming, bouncing, running, climbing.... To satisfy that drive inside her.

Gary got to experience it last night. We took her to the mall with us to get a few back to school things for Noah, Mckenna and Ayden Jane. She had spent the morning doing laps in the car with me and at the eye doctor for herself. The afternoon was not very active either and we had not been swimming in 2 days. Ayden Jane was awful. She wanted to pull everything off everything, ran if we went to pick her up, yelled about her clothes being itchy... It was sort of like a toddler in sensory hyperdrive. Loud, fast, strong, opinionated, disobedient... She was the same the last time I tried to shop so I just haven't gone in a while. Gary's response was we would not be able to go out any more.

I told him not acceptable. I was not going to be trapped at home because of this. I would plan better and take her more often to get better at it but that I refused to stay home. I think her behavior just surprised him. He had not seen her behave like that before and when he tried to deal with her the same as he did with all the others, it was obvious that it would not work.

Monday, August 23, 2010

PWS vaccation

I was chatting with a friend the other day. During the course of the conversation I was talking about how excited I am for Ayden Jane to be going to preschool... Then I heard myself say, "It's not that PWS is so hard each day, it's just that you never get a day off."

I thought a lot about that sentence over the next couple of days. Yep. It describes it well. I am sure it is the same for all special needs families or people with chronic diseases for that matter. Sometimes I just feel like if we could get a break from PWS for a couple of days we could get a fresh perspective and a new energy... Alas, it is just not possible.

I imagine as we continue to head down this road, we will have the opportunity to get away. Not sure we will stop thinking about how things are with AJ... Then I realize that it is Ayden Jane that will truly never get a vacation from PWS. I thought about other kids, like those with diabetes or some form of handicap. I know several teens who deal daily with these and it is just normal to them. Sure, they would choose not to have to deal with these things, but they have accepted it as a part of life and choose not to let it define them. That is what I want to teach Ayden Jane. I want her to know that she is an awesome kid with so much of value to give the world. That yes, it stinks she has to be so careful how she eats and has to work harder than the average kid... but that PWS is not who she is. I want her to know that she is Ayden Jane, a sweet, funny, energetic kid who, by the way, happens to be missing a bit of Daddy's DNA.

Sunday, August 22, 2010

Fun Weekend/Back to School

Well, we had a great weekend. Sat. involved playing on the playground while pretending to watch Noah play soccer. Then a bit of shopping. After we came home Ayden Jane was in a great mood, but very much needing some contact. Noah was on his bed in his room and AJ was totally teasing him and doing anything to get him to wrestle, tickle, chase, squish, throw her... He finally looked at me and said, "Mom, you really need to take this kid swimming." Mckenna and I were already planning on it so off we went.

We did not plan to stay long because it was going on 7 when we left, but Mckenna had some friends show up and they were having a great time. Ayden Jane did her thing and hung in there a long time. It was nearly 9 when we came in the house. I told AJ, "how about we just put your diaper on now (still wear diapers for night time), then brush your teeth." She answered, "Okay Mom. I just need to lay down a minute." Well, I think she was snoring in 20 sec.

Today we hit the beach. We stayed out a good while. Mckenna surfed and Kayla hung out in the water with her. Very sweet of her as the waves were not nearly big enough for Kayla to ride. Ayden Jane and I played in the shallow waters near the edge. AJ was quite mellow for most of the time but had her spurts of swimming and playing with Mckenna. She was funny as she met someone new and did her stare and take it all in routine. Strange how she just has nearly no affect while taking it all in. Then once she gets things all sorted out to her satifaction, she is back in action. I guess one day I will have to teach her that it is not very polite, but for now I am just hoping she is cute enough that no one gets offended.

Tomorrow it is off to school for our first real week. We will go Mon., Tue, Thurs, Fri. AJ has horse back riding Tue. nights and PT on Wed. morning so we will skip school that day. For now I will have to pick her up a bit early on friday for speech, but in a month we will transition to the elementary school so who knows! I mentioned to her tonight that she had school tomorrow and she was so excited. I am glad she is excited because I know I am! Seriously? Four mornings a week to myself? Could it be true?

Saturday, August 21, 2010

Well, the "back to school" is behind us. The kids started Wed. The 3 big kids were TIRED by Friday, but adjusted to school pretty normally. Kayla has chosen to take 3 AP classes so is working hard. Noah is doing what he has to and Mckenna is excited about recess. Yep. Back to normal.

Ayden Jane had a 'meet your teacher' time on Wed. After we met the teacher and played a bit, I told AJ it was time to leave and she cried. She wanted no part of heading home so soon. (yes, we left) Thurs. I decided to just go through the drop off line and let her hop out. She knows the place well and was so excited to go... The teacher opened her door and helped her out. Then she reached in to get AJ's backpack for her and when she turned to hand it to her, Ayden Jane was already half way up the stairs. No looking back, no concern where Mom was, no good bye.... I might have been sad if I were not so proud of her. Watching her zip up the stairs and knowing she was going off to a grand day of preschool with her friends was such a 'normal' moment... 'normal' now equals amazing.

Wednesday, August 18, 2010

Here We Go Again

Yep, Ayden Jane is back to her cycle of sensory seeking and spurting. It is exhausting. We have had a couple of days lately where she is just out of control of her own body. Swimming seems to calm everything quite well, but I think she is honestly at the point where she is more comfortable in the water than out! It seems if we swim one day, the next she is fine, but the day after 'it' hits. We did not swim yesterday so today was crazy, but it was good because Jen (PT) got to really see it first hand and so did Gary.

So what does it look like this time? She is trying to do everything too fast. This causes her to fall a bit, run into things and get frustrated if she cannot do it fast. She becomes bothered by clothes, quick to get angry or cry, yells, falls, is more difficult to understand and has a 2 second attention span. Jen totally saw her going too fast and losing quality during therapy. At the same time there are some really cool gains going on, just that she is 'out of control of her body'. I have seen the difference swimming brings but Gary has not really witnessed it. Tonight he was called off work so we took the kids and went to subway for supper (woo hoo). I nearly had to leave with Ayden Jane because she was crying... (luckily she pulled it together) I then took Kayla to shop for school supplies and Gary took Mckenna and Ayden Jane to the pool. He had not been swimming with her in a while and was amazed at how great she is in the water. He also commented on how different her behavior was after about 20 min. and how happy she was the rest of the evening. Even a friend he ran into at the pool noticed. Prior to swimming, she could not even keep her shirt on without it really bothering her. After swimming she could wear anything...

Jen is going to bring back out the weighted vests and moon shoes to see if we can get Ayden Jane back under control of herself on land. I just hope I do not need to go back to the brushing protocol. Anyway, she was stepping up onto a stool going sideways today. She was even getting the hang of hitting a ball off a tee. New skills she could not even begin to do a month ago.

As a parent it sort of reminds me of changes Noah would go through as young boy. He would have a spurt in strength and then the next thing ya knew, he was hurting Kayla when they played. He was just suddenly so rough and had no idea how strong he was...

Tuesday, August 17, 2010

Moderate Verbal Dyspraxia

As Ayden Jane was getting closer to 3 our speech therapist gave her an evaluation which was about as detailed as Ayden Jane could handle. We figured, the school district person taking over would need a clear picture of AJ but it would take a long time before AJ would cooperate sooo... Here are her results on from 2 tests. (we tested articulation because of the poor clarity of her speech even though her vocabulary has grown by leaps and bounds)

Goldman Fristoe Test of Articulation: Standard Score 66, Percentile 5 Honestly, not a shocker.

Kaufman Speech Praxis Test (KSPT): Therapist wrote - developed to assist in the diagnosis and treatment of verbal apraxia of speech. It is used to determine where the child's speech system is breaking down, and to help provide a systematic course of treatment.

Part 1 - Oral Movement. Ayden Jane scored a SS of 79 percentile of 6. Places her as mildly delayed. Considering we have not 'worked' any of this I am not too worried here.

Part 2 - Simple. Ability to produce sounds in isolation and simple word patterns. AJ scored a SS of 102 (woo hoo) percentile rank 58. This we have worked and it is obvious.

Part 3 - Complex. This evaluates the more complex word shapes. AJ scored a SS of 40 (yuck) percentile rank 2. Nicole did notice, however, that part of the poor score was that there were some sounds she was to use which she just does not yet have and she made the same mistakes (substitutions) repeatedly.

Part 4 - Spontaneous Length. This assesses the intelligibility. SS of 90, percentile rank 22. Nicole rated this using the information from part 3 somehow. I haven't had the chance to ask her about it yet, I am just reading off the report.

So to sum in all up: Based on the results of this testing, Ayden Jane is presenting with moderate Verbal Dyspraxia , which involves extensive replacements of sounds, length of utterance and complexity continue to result in motor-speech disintegration, inability to perform oral diadochokinesis, phonological processes are more consistent, and better productions of single words versus longer utterances.

In the end, it all means what I already know. Ayden Jane has a LOT to say, but cannot always get her mouth to cooperate.

Sunday, August 15, 2010

"I need a go swimmin' Mom"

We are fast approaching the end of summer and lately my focus has been a bit off of Ayden Jane. Sometimes this is good and it is great to know that we can 'get away' with having her just tag along...

We had Mckenn'a party and Kayla's actual birthday. I worked several Pelicans games with Noah and had our anniversary. We are doing a bit of shopping and lots of paperwork to get all 4 kids ready to go back to school on Wed. I just did not MAKE the time each day to do sensory stuff with Ayden Jane. That would include swinging, climbing, bouncing, swimming, massaging...

Today (and a bit yesterday) I paid the price. Ayden Jane was miserable, therefore Mom was miserable. The best way to describe it would be to say that she was completely uncomfortable in her own skin. She couldn't stand to wear almost any shirt. She declared them all itchy and was obviously uncomfortable. She honestly walked into a few walls because she was going so fast but was not able to maneuver as well as usual. She was whiny, unreasonable and clingy and had lost all emotional stability. She could not focus on anything for longer than 2 seconds. She was pitiful. So by the end of the day I was exhausted, frustrated and wanted AJ far away from me, but also felt really bad for her. (Not to mention the fear of whether this was a glimpse into the rest of my life) Ayden Jane summed it up perfectly with a teary, "I need a go swimmin' Mom."

I mulled over the statement and finally I summoned the energy. Thankfully Noah and Mckenna were willing to pitch in and we took her swimming. She swam hard. She figured out how to take the pool noodle and ride it like a horse across the pool. She swam off the steps and back on. She jumped in. Noah threw her HIGH, really high into the air and she laughed and squealed, "I like dat. More Oah." She swam back and forth between us. An hour later the change in her was astounding. She was calm. She was reasonable. She was happy. She could walk in a straight line. I wish I was able to make the description even close to expressing how the storm was calmed. What must it be like to live in that body when it is so out of control? I don't know that I will ever understand sensory integration, but it is so clearly a big piece of Ayden Jane. Well, the lack of SI anyway. It is apparent to me, however, that motion and activity and touch... will always be needed for AJ. I will make time.

Saturday, August 14, 2010

Happy Birthday Kayla

Because Kayla (as well as Noah and Mckenna) is a big part of Ayden Jane's adventure, I think this post applies. Kayla has made a big impression on AJ and as you will read, AJ has had an impression on Kayla.

First of all, my Kayla. She is 17 today and entering her senior year of high school. She is very bright and a true student as well. As a teacher I found it a rare combination in a student to have both brains to get away without studying, and the drive to study anyway just because you are driven to learn. That's my Kayla. Even before Ayden Jane, she was headed for medical research. We have dear friends who headed down the path of another, more rare and more medically complicated rare genetic disorder with their son. He is a miracle and Kayla was drawn to all they were doing for him. We even went and stayed at the Ronald McDonald House to give his mom a break when he was undergoing bone marrow transplant. That sealed it. Seeing the hospital and hearing about all they were doing for him, she was hooked. Then came our journey with Ayden Jane.

Now she is looking into college. She has lots of opportunities and we are hoping to find the magic balance of quality school, place she is excited about and good scholarship to make it affordable. So what is she interested in going into? Genetics. She has listened to me talk about gene expression, was the wall for me to talk to as I try to understand SnoRNA... and her eyes don't even glaze over. Now I don't think she has any grand desire to cure PWS per se, but I'd take it! (Well, I am sort of hoping that one will be well on its way by the time she would get through with school anyway.)

It is strange being a parent at this stage. I think of Kayla so clearly as the little girl with the bright blue eyes and big grin that could crawl like lightening, or the slightly neurotic 5 year old who started her day with "what is the plan today" because she really needed to know, or the somewhat shy middle schooler who was every bodies friend because she was the antidrama (pretty sure her brain was just too busy subconsciously solving algorithms), or... but she has become a beautiful, brilliant young woman who knows and loves God and has a big heart for those who have a battle to conquer and the drive to hang tough and find solutions. I don't know what I thought she would grow into when she was tiny, but I cannot think of anything I could possibly be more proud of.

So, Happy Birthday Kayla. Thanks for 17 great years! You have already been such a blessing. Here is a picture of Kayla from her mission trip to Guatemala. I won't be surprised to hear about many medical missions trips over her lifetime.

Thursday, August 12, 2010

Finally and More Food Success

Well, first I have to admit some bad parenting. Mckenna, who turned 9 the end of May has not had a 'real' birthday party literally in about 3 years. We did a small family sort of thing and Mckenna is not the sort of kid to really worry about such things so with her birthday falling in the last week of school and right around Memorial Day it just sort of slides by. We were determined to change that this year and we did! Tonight, yep, August 12 (which actually just happens to be our 21st anniversary), there is truth to the saying better late than never. Once summer started it was near impossible to get the friends that were important to her to all be in town when Gary could take time off.

We took 4 of Mckenna's friends and went to a movie and to, da dum... a pizza buffet and arcade. Not the sort of place I like to take Ayden Jane. The arcade part was great because it was a great distraction from the food, but pizza is not a food Ayden Jane really eats. Let's face it, the crust is grain and she has to really limit dairy... Luckily there was also a salad bar. So, I gave Ayden Jane a plate with hard boiled egg, diced ham, peas and tomatoes. She loved it, sat right in the midst of the 9 year old pizza eating machines as they pounded down regular pizza followed by desert pizza and never asked for a bite. Yes!!! Early training is soooo paying off. I know it won't always be this easy, but it gives me hope that a certain 'normalcy' will remain in our house hold.

It was great to be able to spoil Mckenna tonight. She has been so great through all the changes in our lives. She is such an amazing sister for Ayden Jane and really would give up all birthday parties if it would help any. She is even thinking about going into PT or OT because of Ayden Jane. Her friends are hilarious and it was fun for me to get to spend a night listening to them be, well, silly 9 year old boys and girls. I am looking forward this year to getting involved in Mckenna's school and getting to know all the kids her age. I taught most of Kayla and Noah's friends and it strikes me at times that I don't even know most of Mckenna's.

Monday, August 9, 2010

I have to say I am excited about Ayden Jane starting preschool. I am excited for her as she is just really ready to play with kids her age and even though she doesn't always show it on the outside I know she is having a great time.

For me, it is a huge sense of relief. In so many ways! I had no idea what turning 3 and exiting early intervention would look like. We were so blessed that I was able to stay home with Ayden Jane during the first 3 years to learn all I could and work with her and learn to understand her. From sign language to just understanding her body language... It was just harder for her to communicate. I learned when she was tiny to catch signals that she was hungry and full. Very subtle, but there. I learned to distinguish whimpers instead of cries. I learned to just 'see' when she was crashing (blood sugar related I would guess) before it was a problem. I realized that often what looked like sleepy was a need for more frequent fuel stops. I learned basic sign and Ayden Jane learned the joy of communicating. It was a wonderful blessing to be able to immerse myself in all things Ayden Jane.

I think, we are both ready to move forward. This summer I have run into lots of people and I find the ever resounding discussion is, "I haven't seen you in a while..." Well, unless you are a PT or ST or Dr., unless you hang out at playgrounds with climbing equipment, unless you frequent the health food store in town, unless you run at very odd hours when the rest of the world is sleeping, unless you are on the sideline of a sports event than no, you haven't seen me in a while. New people have seen us, just that my path took a sudden turn and in part, I left my old life.

The best part is, Ayden Jane is doing so great and I think that this year I will get to merge my old life and my new life somehow. I will be thrilled to see my new 'PWS friends' at the upcoming conference, but I will also be back in my kids schools. (as a volunteer not an employee, but still involved) I know that our challenges are far from over, just that my role has yet again changed a bit. We will continue to do therapy and keep up on research and tweak diet and supplements and fund raise through the marathon, but the time and effort into those things is just less intense. In a lot of ways, preschool will hit a lot of those therapy areas for me. Lots of cutting, coloring, painting, gluing, role play, books, social skills ... the list goes on and on.

So, I breathe deep. I look forward to the next chapter. I am sure it will be just a busy, just as exciting, just as challenging, hopefully not as hard on the heart strings. I know I will head into this chapter with God's guidance (assuming I remember to listen) and the support of family and friends.

Friday, August 6, 2010


The waves were small today so Noah was a great big brother and helped Mckenna with her surfing. Mostly he just pushed her into the waves so she didn't have to work so hard. It was fun to watch them out there laughing and enjoying spending time together. Ayden Jane was on the beach for much of the time and would cheer for Mckenna as well. My kids really have all always gotten along well, not perfect but really well. They honestly enjoy each other. I don't know if the challenge of having Ayden Jane for a sister has made it happen, but I do know that they all have bonded over watching Ayden Jane grow and all of them cheer her on. They have grown into loving young people who see what others can do, not what they can not do. They get the concept of tough love. They would do ANYTHING for Ayden Jane, but they often push her to do more for herself because they know she must learn how. They are all 'therapists' for her in many different ways. Mckenna has gotten involved in her physical therapy this summer and even gets homework each week. Noah chases and wrestles with and swings AJ all around. He also gets Ayden Jane to say all sorts of crazy things. Great for articulation! Kayla reads with her and takes her places and cuddles and can just sort of 'read' what she needs.
I guess I have 4 amazing kids. They are all so unique and they really do fit together to make us a family. I couldn't imagine our crazy home any other way.

I look forward to seeing Ayden Jane to this some day! For now I think Mckenna does pretty great!

Thursday, August 5, 2010

Another Day in Paradise

I took Mckenna and Ayden Jane to the beach today. We went in the morning (well not as morning as I would have liked, but alas, we got there). The ocean was still fairly glassy and although the waves were not big, they were breaking well. What does that mean? It means Mckenna was able to catch wave after wave. Ayden Jane played at the edge of the water for a bit and would stand up and cheer for Mckenna when she noticed her standing on her board surfing. It was very cute.

We took the standard walk that AJ is now hooked on. We go about a 1/2 mile(?) down the beach and back. I am not sure if I cover a mile, but I know Ayden Jane does! She runs ahead, comes back, runs to the water... She amazes me every time as she makes her way back.

Today when we got back from our walk, Ayden Jane found a tide pool. The tide was coming in so although it was mostly a puddle at first it kept getting deeper. She played for an hour as the water kept coming up. By the end, she was running through water up to her hips, lying on her belly with waves crashing over her and 'swimming' with her finger tips on the bottom. I really needed to do therapy out there: side steppin' and high kneel to half kneel... She was just so stinking cute and happy with her sand, shells and ocean.

On a sensory note, I must say Jen awakened some new nerve endings/connections/whatevers. After therapy yesterday we went swimming. Ayden Jane was in such a hurry she ran off the edge of the pool accidentally several times, wanted squished constantly and was touching everything! I guess I have a lot of homework this week to get all the new connections groovin'!

Wednesday, August 4, 2010

Jumpy House

Yesterday I took Ayden Jane along with Mckenna and 2 other friends to 'Leaps-n-Bounce'. We had the whole place to ourselves! It is a place with several bouncy castles, slides and playgrounds. They are all the inflated ones like you find at outdoor events. They jumped thier hearts out for 2 hours. Ayden Jane had a great time and definitely got a work out. She bounced and climbed and slid and threw balls... I was impressed that she was able to stay up (for a little while) with the other kids jumping. She has been in these before, but had trouble with stability and fell a LOT. Definitely a good place to take her for some extra therapy.

We stopped at chik fil a on the way home and not only did she eat chicken and fruit, but she played more in the play place. We came home in time to squeeze in a nap before it was off to horses. She kept up the energy and enjoyed riding Mindy. I guess this is what I mean by having a great summer. Go, go, go...

At the end of the day, I try to get Ayden Jane to talk about her day. I see if she remembers what she did or the words for what we did that was new and exciting. Her summary, "I like the jumpy house mommy."

We had PT today. We have been working on getting Ayden Jane to use her hips with 'opening and closing her legs'. It was hilarious a couple weeks ago when we first tried to get her to stand and use a straight leg to 'kick' a ball sideways. She immediately used a sort of karate kick, but just could NOT make the motion Jen was looking for. She backed up a bit and had AJ sit on the floor with her back against a wall so she couldn't 'cheat' and open and close her legs. At first it was funny to watch her little brain try so hard to figure out which muscles to work. With a bit of cuing and then some practice, she got it but still had to really think about it. Next it was standing to shift weight to one leg and 'open' the other with an air split so there was no 'cheating'. Improvement. This week we moved to trying to shuffle sideways across the room. It was HARD for AJ. So many new weight shifts and muscles to trigger at the right times... She did okay I guess, but I think it makes her brain work as hard as her muscles! Next was going from high kneel to half kneel and back... Jen is working to prep her for some rotational stuff. She did really well with this, but the combination of such hard work sent her running for me and BIG SQUEEZES. She wanted smooshed all over. Funny little sensory system.

Monday, August 2, 2010

Back on Track

Okay, honesty. We have had a LOT of fun this summer, Ayden Jane has been doing well, I have thoroughly enjoyed all my kids, not having so much of a schedule has been great... it has been spontaneous summer fun.

So what do I need to back on track with? Therapies and supplements and a food schedule. It is wonderful to finally be at a place where I can get away with 'cheating' a little and not pay a big price but it is a bit like when you skipped your first couple of classes in college. (Not that any of you would know what I am talking about) It was a bit hard to skip the first one because you had this fear of what would happen. You finally get up the courage or just get lazy enough to skip your first class. Hey, your still in college, no one lectured you, you do not have to pack your bags... The next class is easier to skip, and so on, then you realize you have gotten slack.

So let's see. Therapy. We do have it still weekly, but I have not done my 'homework' as well as I should. I know it makes a big difference but... Supplements. I used to do most supplements divided into 3 doses daily. Early in the summer I worked it down to 2, which was great but likely not best for Ayden Jane. It is likely effective for summer because I never know where we will be for lunch so it is better to have 2 times. That is, if we give her the supplements both of those times... Do you see a pattern? I ran out of the ribose last week and just ordered it today! There was a time when I would stay up nights worrying that AJ got the exact amount of everything at the perfect time like she would blow up if I was the tiniest bit off? Lastly, food schedule. Food what? That should explain it.

So what effects do I see in Ayden Jane from all of this chaos? Surprisingly not too much, but I would say the last week I have definitely noticed some issues with 'emotional stability'. She gets upset and yells at the drop of a hat. It is enough oddly different from a typical toddler/preschooler tantrum that I feel it is PWS related. I feel bad for AJ because I am sure she is feeling a bit out of control and it is my fault. We played really hard the past couple of days and Ayden Jane hit her peak of exhausted. She spent the morning getting upset with Mckenna, was not so playful at the playground, took a good nap but then fell asleep at 6:00. She is still sound asleep and will likely make it til morning. She has NEVER gone to bed that early.

So the plan is let her sleep long and hard and begin to get back on track with consistency. 'Food schedules' will come back into play in a couple of weeks when school starts. I need to schedule therapy time for the 2 of us and maybe even head back to dividing doses by 3.

Sunday, August 1, 2010

Beach Fun with Mckenna

I have to say it is pretty amazing to get to live at the beach. I love evening out there more than most any other time. Mornings are be great too, but I keep thinking of all the things I should be doing...

Mckenna was an awesome big sister (as usual) tonight with AJ. She played with her in the tide pools (well, tide puddles anyway). You can see in this picture they get quite animated.

I just love this picture of Mckenna. I had to throw it in!

Mckenna taught Ayden Jane how to make a drip castle. AJ loved it and worked on it for a long time...

In the end, Ayden Jane decided it was more fun to drip on yourself!