Saturday, July 31, 2010

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!

Thursday, July 29, 2010

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.

Tuesday, July 27, 2010

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.

Monday, July 26, 2010

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:

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?

Saturday, July 24, 2010

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.

Friday, July 23, 2010

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.

Tuesday, July 20, 2010

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.

Monday, July 19, 2010

Potty Training Cont.

Well, I think we are trained ... as long as we are nakey. It seems that the next big step is to 'remember' to use the potty even when we have 'big girl pants' on. Something about the feeling of having even the little bit of something on makes her not really notice until it is too late. I guess practice is the only way that will improve? At least we have a good start.

On to other news. Communication is definitely improving. I don't mean that her vocabulary is growing by leaps or even that her articulation is getting better. She just combines things in new ways and is funny. It is hard to explain because the difference is subtle. Just that I don't feel like we have the same conversations or even the same 'root'. You know, those favorite repetitive phrases that, although we are thankful for, we have heard enough of.

All these new things just make her seem more like 3 than 2. I know we are approaching 3, but it still surprises me sometimes when she sounds and act 3. Definitely bitter sweet. We have worked so hard to be ready to be 3 and we are so proud of her, but as with all little ones, we will miss the tiny age. (Especially since it is our last).

Saturday, July 17, 2010

Potty Training Boot Camp

I have known all summer long that potty training was on the horizon. It was time, all the signs that she was 'ready' were there and she needed to be trained to go to the preschool class I am sending her to in the fall. I decided this weekend was the time. Noah was off to Richmond for more soccer, Kayla was at an old friends house and even Mckenna was invited to spend the night. No car pools to run, kids to feed... just me, Ayden Jane and the potty.

I started when she woke up. I took off the diaper at 7:30 and we went bottomless for the day. I set up her potty chair in the living room for easy access... We had breakfast and I made sure she had her almond milk hoping to spur her on. Nothing. I played with her, followed her out around when she slipped away, read books to her on the potty every half hour or so... She sat and looked at me and said, "please help me Mommy, I can't make it work." Finally at about 10:30 or so she peed a tiny bit on the floor (I love hardwood floors) and realized what she was doing. I saw it too and told her to hurry on the potty. She sat down, but that was it. She couldn't 'turn it back on'. Then during our 11 something try (while we were playing catch) she realized she was going again. She panicked again and turned it off, but we got to celebrate BIG because there was success! I put the diaper back on to nap and she woke up dry. We went right back to work.

By about 3 pm and we had managed to pee 2 times (once on the floor and once in the potty) just a bit each time. Let's just say her belly was HUGE. She sooo needed to go but just couldn't get the hang of it. She was doing everything she could to take her mind off it. It was pretty hysterical (now). I was really beginning to wonder if this was going to work or if I was just going to need to put the diaper back on and try again another day. Finally, after Gary got up and was in the living room with us while we played catch and she sat she realized she was peeing again. This time she did not freak out and let it keep going. She was so excited she danced and danced in celebration. By the end of the night she jumped up from playing and ran to the potty with a mission. Went no problem... Tomorrow we will build on it, but I think the major breakthrough has come. Amen.

So, how did training her compare to my non pws kids? I think it was definitely harder for her to figure out how to work the muscles. I don't think that Ayden Jane is as affected by low tone or weak muscles as much as many with pws, but she definitely takes a bit longer to acquire a new skill or needs a bit of extra instruction. Once she figures out how to work 'em she has all the ability she needs. Same applied here only I could not really help her 'get it' the first couple of times.

Wednesday, July 14, 2010

90 Day Eval

Jen came to see Ayden Jane today and it was 90 eval day. Honestly, I used to not like these so much. I remember when AJ was tiny and therapy seemed to just turn on things I could not dream of sometimes. We used to joke about Jen knowing of secret buttons that she would push each week... I would feel like I had a new mission for the next week. On eval weeks I just wished the time spent during the eval. would be used to 'turn on' new things.... Now, I finally relax a bit about Ayden Jane's skills and the eval is enjoyable. I don't worry about time lost, but enjoy the way that it helps direct the next steps. It is nice to see the goals that were met and get excited to think about the things she will learn over the next chunk of time... It really is amazing when we sit back and look at where she is. I will post her goals next week when I get a copy of them. In fact, I think I will dig out the old ones just to look at how far we have come!

I took Ayden Jane to the beach today. (Surfin' as she calls it) We got there and decided to take a walk. I wasn't sure how well that would go... but Ayden Jane thought it was a great idea and off we went. She was adorable. She walked a bit, ran a lot and went out into the water and jumped the waves. I made her turn around after about a 1/2 mile and she made it all the way back with just a bit of encouragement. When she was in the water, she did a great job of being 'stable'. She was knocked over a couple of times and thought it was quite funny, but had no trouble getting back on her feet. She tried to jump the waves with me and her lack of time was quite hysterical.

We left the beach and headed for the pool. Ayden Jane did her usual swimming and jumping and 'floating' (which is really more like sinking with style). Anyway, we headed home and as I went into the shower, she was playing with Noah in his room and I could hear her laughing. You know, nothing like a toddler belly laugh. She just feels so great after the sand and water and movement and touch... She is just goofy! She was loud and silly and totally connected with her big brother. Priceless moments.

Monday, July 12, 2010

Just one of those moments

Ayden Jane was getting quite rambunctious this afternoon so I figured when our neighbors picked up Mckenna for swim team practice, I would take Ayden Jane to our pool. I asked her, "Ayden Jane, would you come swimming with Mommy? I would love to have someone come swim with me." Ayden Jane answered very matter of fact, "sure. I go swim with you." We headed to find our swimin' suits and on the way Ayden Jane just blew me away. She stopped, turned, looked straight at me and said, "Mom, thank you for asking me to go swimmin' with you. I love to go swimmin' with you."

I know my big kids said adorable things when they were little, but there is just something beyond magical when Ayden Jane strings together words spoken clearly and with a sense of connection and conversation. It honestly nearly brought me to tears. I still do not really understand how communication can be so great one day... no, one moment and then not there the next. So what causes the blank stare and pause sometimes... Then other moments it as if the wall that is sometimes there is totally gone and soooo much personality comes pouring out. I guess I will just enjoy, keep working and hope that the trend of more communication and connection as time goes on continues.

Now, potty training, uggg. Ayden Jane gets the concept and does have muscle control to NOT go often but seems to have no concept of how to 'go' on demand... Basically, the problem is that she just does not pee often. She is more of a volume at very infrequent intervals kind of kid. This makes for very little practice! She will literally stay dry for hours then when she goes... no stopping it. I guess I cannot get too frustrated yet as I really have not officially started training, but I was hoping to have a couple of random successes to help us jump start the process.

Sunday, July 11, 2010


Strange day. I am not going into details because, well, not the place... Just that the reality of change is definitely upon me. Not that it is necessarily bad, just that to move to new things we have to leave some old ones behind. (NO we are not moving). I know that is true of anything. Sort of like when the kids left preschool and moved to 'big school' there was the excitement of the newness and pride of accomplishment. It cannot be helped, though, that they left some beloved things behind. That is the sort of moving on I mean.

It just seems to be everywhere for me. Mckenna moves to an new school, Ayden Jane starts the wonderful adventure of preschool and is exiting early intervention, Kayla is a senior and is looking toward college, Noah is already heading for his sophomore year. I am on the cusp of having all my kids in school and me not working! An accomplishment 17 years in the making.

Some circumstances here have caused me to think back over the past 20+ years and I am struck by how different things are now. Not bad different, although there are some things I think we used to do better... Just different. I miss terribly some of the simple things from those years and many of the friends. I think I am ready. I guess I realized that to move forward does not erase the things left behind. They will always be a part of my heart and that will be enough. After all, there is so much left to see and do and enjoy and meet. I choose to embrace change.

Saturday, July 10, 2010

Fun Busy

This week, like most of this summer, was overflowing with business. It was truly fun busy though. Not pre planned for the most part, just non stop action. The last 2 days were highlights for Ayden Jane. We had 2 wonderful little boys stay with us over night on Friday night. They are 7 and 5. (I will stick with numbers for their names since I don't even think their parents know I have a blog let alone having asked them if I could name the boys.) Mckenna was great with them and they all played and played. Ayden Jane totally just tagged along and did her best to keep up. We went to the pool and AJ was very excited that, "(7) and (5) ride in my car." After they came back AJ just couldn't take any more and fell asleep on the sofa watching them play the wii. The next morning she was beyond thrilled that they were still here and continued to ask where they were after I took them home. I am pretty sure Ayden Jane thought she was going to get to 'keep' them.

We also finished a speech eval. Friday afternoon before they came. Ayden Jane did a great job talking to Nicole and I feel like we got results that truly show the best she is capable of. Nicole is going to write a report with the scoring to help me get the right speech services for Ayden Jane next fall as she ages out of early intervention and into the school systems programs. I know that the schools are limited as to what they are financially able to provide right now, but I am definitely interested in fighting for speech. I just think it is so important for her. She is doing well, but it definitely comes and goes and only comes with hard work. It is also hard to measure, but there is just something still a bit off in how she just gets over whelmed with 'newness' and the speech just shuts down.

Nicole mentioned a couple things quickly in explaining what the eval was measuring for articulation and it was amazing how true it was. Ex. Ayden Jane cannot do any blends. If two consonants come together in a word, she just uses whichever is easier to say. Instead of plan we get pan, sleep is seep, truck is tuck, brick is bick, snow is no, swim is wim... The good news is that she is hitting some of her endings much better. Now in the grand scheme of language development is this a really surprising result? No. I just know that over time, we have seen it in both motor development and language, that things don't just happen with Ayden Jane. Don't get me wrong. I know we are incredibly blessed because Ayden Jane responds so well to therapies that she is doing amazing. Sort of like she learns with ease and retains much of what she is taught, but she definitely still needs the professional instruction to break the skills down and keep her progress moving. I should have the scores and report in a couple weeks.

Tuesday, July 6, 2010

Summer is Saved

Okay, so 'Summer is Saved' is a bit overly dramatic. It gives you a hint, though, into how excited I was tonight when Ayden Jane fell back in love with the ocean. It has been driving me nuts all summer that she would go NO WHERE NEAR the water of her own volition. The kid jumps in a pool and swims to the ladder by herself, but would go no where near the edge of the ocean. To add to the mystery, the first few times we were there early in the season, she tried to swim to Europe! I was really frustrated, seeing as how we live about a mile or so from the beach and my other kids all LOVE it.

In Ayden Jane's mind, swimming is what you do in the pool and surfing is what you do in the ocean. Lately, I would tell her to get her swimming suit on and she would immediately say, "I go swimmin' Mom. I not go surfin'. Ayden Jane not go surfin'." My question was why? I had a theory and it seems I was right. The water was just too cold. It is funny. Ayden Jane does not have big issues with temp. regulation, but must have minor ones. She just despises the 'cold' ocean water. Tonight the water was gorgeous and Ayden Jane ran in and out of it so proud of herself for 'surfin'. When we took her out deeper, though she became chilled to shivering in about 10-15 minutes. Once chilled she is DONE. Same thing at the pool. She will swim her little heart out, but as soon as she gets cold through she just wants out and headed home.

We had to laugh at Ayden Jane in the soft sand. It really all started on the fourth of July. We went to a minor league baseball game and after the game Mckenna found a small hill of grass to roll down. Remember, we live in coastal SC so my kids hardly ever see a hill. Well, of course, what Mckenna does so must AJ. It was quite comical to watch her figure out how to lay the right direction and then make her body roll. She loved it so much we actually stayed there a good 15 minutes just cheering her on as she rolled and ran back to the top. It probably looked pretty silly now that I think about it. Well, back to the beach. Ayden Jane still loves texture sooooo put the two together and there she was rolling and rolling across the soft sand. She was beautiful!

Thursday, July 1, 2010

Park Pictures

I was waiting today while running errands and looked through the pictures on my phone. Mckenna is known for taking pictures with it so it is always a pleasant surprise to see what is there. I just thought these were cute.

The seat she is on spins fast and is angled. Ayden Jane loves to get dizzy.

Yep, she wants to stand on it.