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.

Stitches

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.

Behavior

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.

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.

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?

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.

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...