Potty Training Completed?

Well, I would say we are 95% potty trained. It is HUGE to me. I just wanted to take a minute really talk about why it was different for her and then I will move on to new topics. I think there were a couple of things at work in the process. First was/is just the ability to figure out which muscles control that area. At times early on, she knew she had to go, sat on the potty and just looked at me pitifully saying, "I can't make it work." Finally, on her little potty where there was no extra balancing or anything for her brain to work on she figured it out. Next step was trying to 'make it work' on a big potty where she had to also work some balance and postural control. We went from little potty to small seat on big potty to just big potty. Each little step she had to really work hard to get the right muscles firing.

At this point we were ready to venture out into the realm of public bathrooms. After all, what good does having her potty trained do me if it just means I can never leave home? Biggest hurdle I had was the little sensory overload that often takes place when she is in a new place. We would head in, she would get in place but you could just see she was so distracted by the 'stuff' around her that she could not focus on 'making it work'. Often this required lots of patience on my part as it meant going into the potty, trying, leaving the potty, heading back into the potty, trying... you get the pattern. At first, 3 trips was normal. Then 2 trips. Happy to report today, success on the first try! I found I need to just be very quiet and sort of ignore her so she can concentrate. It takes a bit of time, but she knows she can now so she will try long enough to make it happen. Whew!

The awareness of needing to go potty seems to be about the same as any child. Pretty good if you remind them. I am actually surprised that she has caught on to that part with little trouble. Now if I can just get her to stop stripping wherever she happens to be when she knows she needs to go and THEN running to the bathroom nakey!

Rocking Chair

My son, Noah, accidentally broke my rocking chair today. Don't ask. Anyway, it made me think about all the hours I spent in that chair with Ayden Jane when she was sooo tiny. We did not know what was wrong, we did not know how far she would be able to come, we had no clue the road ahead for her, we just knew that we loved her. I would rock her and pray for her and for me and for my whole family and for the doctors to find answers. The hours and days and weeks turned into months. Somehow she would find ways to let us know she was in there and trying her best to find her way out. There was a fighting spirit in her even then. Yep, sometimes I cry when I rock in that chair late at night when the house is quiet. Not out of sadness exactly, just, well, because, I guess, sorry no real word for it. I guess it is just what happens when we feel sorrow, fear, hope, amazement, pride, sadness, joy, awe and wonder all at one time.

This picture is of Ayden Jane at about 14 months. She was just starting to stand confidently and take a couple of steps. It is one of the many examples of the miracle we call Ayden Jane.

Horses and Wacky Temperature Control

Ayden Jane had horse back riding tonight. She rides every Tue. night for about 45 min. and loves it. She has been riding since about 18 mo. old and has always ridden Mindy. Mindy is a small horse who is older and has been a 'school' horse for a long time. Tonight we went and another child there needed to ride Mindy so Ayden Jane was given Kelsey. We were all a bit worried about how AJ would react... I was amazed. I felt like it was an after school special or Halmark Lifetime movie as Ayden Jane fell in love with Kelsey and just was totally comfortable on her from the moment they met. I know it sounds nuts and I am not really a horse person, but little things like AJ wanting to stroke Kelsey (she just recently would stroke Mindy and just not really comfortably) and just the immediated comfort she had with Kelsey. Ayden Jane definitely got more movement from the bigger, younger, more athletic Kelsey and whether it was that or some other horse/little girl connection, AJ did not stop talking the entire time on the horse. "I like Kelsey. Kelsey likes Ayden Jane. I ride a big horse Mommy. I like ride the big horse Kelsey... Kelsey has ears, Kelsey has shoulders..." Honestly, you would have thought that Ayden Jane had been riding Kelsey since birth with the confidence she had up on her back. I was in awe.

On and unrelated note an out of whack hypothalamus caused by pws makes maintaining body temperature a bit tricky for those with pws. Ayden Jane is lucky to be on the mild end of this as well, but we do see it come up from time to time. I think for AJ it is more of a delayed reaction? It seems like she gets a bit too hot before her internal thermostat decides to do something but then is able to cool off. Same with cold temps.

When I was still teaching, I tended to over simplify and then build on that to the more complicated. Just warning you my brain can come up with some strange analogies... Here is one for Ayden Jane's temperature issues. I picture it as sort of like when you turn on the air or heat in your house. If you set the air conditioning to 75 then it automatically kicks on when the temp is 76. If AJ were an air conditioner and I set her at 75 she would likely just not kick on until she hit 77 or 78. Her thermostat is just a bit off or maybe not quite sensitive enough. For Ayden Jane, although it is a bit off, it is not really dangerous because it will kick in... For some with pws that does not seem to be the case.

Heavy Monkey

We noticed early on that at times, especially when Ayden Jane is going through developmental spurts that she needs some extra deep input to calm down. We looked into weighted blankets, but I wanted her weighted friend to be something that looked like the same 'friend' any kid her age would be attached to. Ayden Jane is also very tactile and she loved the feel of the monkey. So I decided to try to weight him.




Well, this is 'Heavy Monkey' as Ayden Jane calls him. As you can see he is a gund cozy. They come in different animals, but Ayden Jane is quite into monkeys thanks to 'Monkey George' (Curious George). She liked him okay at first, but once he was heavy she fell in love.



The picture below shows the lap pad that goes inside of him. I bought the lap pad and cover off the internet after my pt and I figured the weight to be appropriate. Here is the link:
http://funandfunction.com/sensory-integration-everything-weighted-c-65_235_237.html

The cover is sewn inside of the monkey with the strong velcrow opening at the seam. I can slip out the pad and wash the monkey (with cover intact) anytime/everytime I need to.



Heavy monkey is a big hit so there are lots of pluses. On the negative side, the weighted lap pad can bunch at times and, obviously, does not spread out through the monkey. I think the idea was perfect to weight a favorite toy/blanket and it was an easy way to make him thoroughly washable. However, I think those of you out there who are more creative in the sewing category could likely make big improvements. Let me know what you think! I would love to improve on the design and yes, I think it would be marketable! Maybe profits to FPWR?

Speech Therapy News

Nicole came yesterday and shared some of the results of testing she has been doing to get a good picture of where Ayden Jane's difficulties lie and to help me as I head to the school in the coming weeks to look to transition from early intervention speech to school district speech.

I do not have the test in front of me as Nicole is still using it to write up a report for the school, but I can't wait it out. I have to talk about it the best I can. The first section had some oral motor things. Moving tongue... Ayden Jane scored a 79 on that portion. (all scores are typical 85-115 within normal limits) I am not really concerned too much about it because I believe at least a portion of that score was the day and the 'not in the mood' attitude that was going on. Nicole is going to hit a few of those things in her last couple of months with AJ just to be safe though. On the next section Ayden Jane scored 102! This section she needed to identify things... Woo Hoo. On the next section, however, we find our problem. I cannot remember if she scored 40 or 60, but either way it was very low. Now the good news is that helps me get her qualified... It also revealed some things that make Ayden Jane hard to understand sometimes. Nicole described some things AJ was doing that she found very interesting and that she also feels are 'very therapy friendly'. Finally, she definitely is still missing some sounds that are supposed to come developmentally later and we expect will be delayed a bit.

All in all, I think it is good news in that the majority of her speech issues are articulation related. It seems that the hypotonia that comes with pws is at least part of the trouble, but I my gut tells me that the motor planning portion is giving her the most trouble. Definitely a little bit of the mouth coordination not able to keep up with the brain. As she tries to say more complicated things I see some frustration down the road if we don't keep working hard.

Here are some more beach pictures I promised. The ones of Ayden Jane in the sand just crack me up. To know Ayden Jane is to know that she has some definite sensory needs/loves. She just loves the feel of the soft sand. She will stroke it and roll in it and scoop it... And of course, nothing is better than having her legs completely buried with heavy sand piled high...

Here she is just singing her little heart out. Wish the eyes were open, but still cute.

I have so much else to say, but Noah has 3 friends spending the night... Yep. That makes 4 teenage boys to add to my 3 girls... House is full, but so much fun.

An Evening With DAD

I have not mentioned Gary much as I have told Ayden Jane's story. He does work a lot in order to keep me home for all 4 kids, but they all cherish the times he can play with them. This evening we just went out to the beach to relax and enjoy some time. Ayden Jane has become a bit of a beach bum! She was so excited to show Dad how fun 'surfin' is and asked him to hold her so they could go out deep.

Just as a funny Dad/Ayden Jane story: Today Ayden Jane was running through the living room and slipped on a book. It was not the sort of fall that really warranted any concern, but AJ was milking it for all it was worth. The drama, she lay sprawled out and obviously pretending to cry for attention. I teased her and made a big deal of how injured she was and that we needed to run to Dr. Daddy to save her. I dumped her on him upside down and he tickled her and wrestled with her... Not a minute after he stopped Ayden Jane ran into the kitchen where I was and gave an oscar winning performance fall and agony (all with a great big grin) at my feet. "I need Dr. Daddy!"

We took lots of other pictures which I will get to, but here are a couple that I loved.