Tuesday, September 30, 2014

Fine Motor and Written Expression

It has been fascinating to watch Ayden Jane work on learning to express her thoughts on paper.

I am happy to say that she can form great complete sentences in her head. She totally gets what a sentence is and attempts to express herself in complete sentences. She is also doing well with spelling. She spells well phonetically so short words that follow the rules are not a problem. She does not do great spelling (nor great reading) sight words but it is coming. All very first grade things.

Now, when you sit with her and she attempts to write a sentence you start to really understand. She just has a really hard time holding the whole sentence in her head and then doing all the little pieces to make that whole sentence come to being. The first word is usually good. It is spelled correctly and generally there is a space behind it. Then the next word will usually have most of its letters but the space behind that word disappears and a trail of a few letters from the remaining words is tacked on.

Last night we worked on it and I told her I could see the first word 'Here' and the space, but read the rest of the sentence as one long word. I asked her where the other words were. She looked at me confused. I asked her to tell me her sentence and then tell me how many words it has. She did it orally with no problem. So I told her to look at her paper and tell me how many words she wrote. She looked and then started to giggle. "Why does my brain stop working when I write my sentences?"

She erased the line of letters and I watched (and helped a little) as she completed the whole sentence. As she finished a word she would recited her sentence to herself again and it would take a minute to figure out what word she should be working on. Then she would try take a minute to use her finger and try to figure out where the word should start. Generally, by this time she didn't remember what word she was writing and had to start reciting her sentence again.... and repeat.

I was amazed both by how hard this process is for her and her perseverance to stick with it until the very end. 

Monday, September 22, 2014

Little Things

I have so much to catch up on but instead I'm going to 'talk' about the little things that have made my crazy days wonderful.

There are times when Mckenna has zero patience for Ayden Jane. Yep. There are times when I have zero patience for Ayden Jane. Typically, these times are in the morning as Mckenna is the polar opposite of a morning person and AJ wakes up talking. Luckily, Ayden Jane is out of the car in just a few minutes as we head to school in the morning. Mckenna proceeds to complete the ride in silence. Occasionally I try to talk but only grunts come in return and nothing is remembered so I generally just go with silence and then text her during lunch if I need to let her know something.

On the flip side there are times like this past Sunday. Mckenna was sitting in church with AJ waiting for things to get started. She began a game where she was writing a word and AJ had to try to read it and draw what the word said. Then they would switch and Ayden Jane would write a word and Mckenna had to draw it to guess what it said.

Ayden Jane loved it! She loved the game, the attention and just being able to play something that was big kid like.

Secondly, Ayden Jane brought home her spelling test. Yep. 100%. We worked on the words a little at a time through the week and she did great with the few she didn't know right off. I know it was not a hard test but I was still so excited. Just to pile it on, her teacher made a note on the paper that said she asked Ayden Jane spell them orally as well. Why is that a reason to jump for joy? I just love that Mrs. C has Ayden Jane do the written work like all the kids but takes the time to go behind and make sure to ask her to tell her orally. She places high expectations but makes sure that there is support.

To top it off, Ayden Jane wrote her first sentence with words spaced and mostly spelled properly. I have made many attempts to get Ayden Jane put space between her words as she writes but she would just tell me she did. (she didn't!) Somehow Mrs. C worked a miracle! It was so fun to watch AJ spell each word and then space them out.

Little things that are such big things.

Sunday, September 14, 2014


Wow, what a couple of weeks. Ayden Jane and how her body responds to illness or stress is such a mystery. She had the short lived virus and then as she began to recover we had the blood sugar drop I posted about a little ways back. I wish the story ended there.

I basically noticed trouble maintaining blood sugar through the school day.  Ayden Jane was daily bottoming out, mostly likely due to the amount of energy her body was putting into refueling whatever it is she depletes when ill added to the energy it takes her to concentrate and just do school. Once she was behind and her sugars down she was thrown for the day. We played catch up after school but it was wiping her out something fierce. 

I was called to school the following Monday because Ayden Jane was in the nurses office complaining of a headache and that her brain wasn't working right. I brought the glucose meter with me and she came in at 71! I chatted with Ayden Jane and realized that she was not getting snack when I thought. I was told snack would be about 1:00, before recess. It was actually not happening until after 2:00. She just couldn't wait that long. 

I adjusted snack and, the following day, went to check on her at about 12:40 to make sure she had it on time (she had a substitute). When I got to her she said she had snack but still did not feel good. That's when I realized she was about 1000 degrees. The air conditioner in her classroom was not working and she was simply overheating. I went to the administration and we came up with a plan to cool her down. Finally, nearly 2 weeks after a simple 24 hr virus she could adequately recover.

I kept a very close eye for a few days, maintained her sugars as evenly as I could... and finally this Saturday she had loads of energy!

The frustrating thing is that she puts on so much weight when her body goes through this process. In talking to Dr. M we feel like somehow after and maybe during illness, when her body is stressed she begins to store energy. She stores energy even when she does not have enough energy to adequately function!

We are thinking that there might be an underlying adrenal issue. Not a critical or acute one, but enough of one that after the initial response to illness is mounted the adrenals are depleted.  We are going to try stress dosing AJ with Cortef at the first sign of the next illness and see if we can head this whole awful cycle off at the pass.

Sorry for all the 'science' rambling... I'll try to be more entertaining next time.

Monday, September 8, 2014

Visiting Noah


It was a beautiful day for a trip to see Noah at Coker.  Ayden Jane was very excited and so was Noah! We arrived quite early, just as the team was beginning to warm up. Noah jogged off the field and was greeted by Ayden Jane running toward him.  So sweet for a momma to watch. Giant hugs and giggles.

I don't have pictures (but I should) of the surprise Ayden Jane received that same night. Kayla and Allie came from Clemson to watch the game with us. I had not told AJ they were coming. At first it was because I wanted to be sure it was going to happen. Later, because I did not know when they would arrive and did not want to hear the constant, "can you text them and see how many more minutes?"

It was a fun evening of soccer watching, chasing and playing on the sidelines and visiting with Noah at Zaxby's after.

I wish the picture was more clear, but it was so cute as Ayden Jane ran across the field to get Noah after the game just like she had done for years. She held his hand for a little while as they walked and she just looks so little next to him.  Holding a hand seems like such a simple little thing, but it is one place we have always seen/felt AJ's sensory oddities.  When little she would absolutely NOT let you hold her hand. It made for interesting parking lot navigation! Now, she occasionally reaches and holds your hand for as long as she can stand it. Know if she takes your hand you are special!

Friday, September 5, 2014


Not going into details, but there have been some... ummm, challenges that our family is facing unrelated to PWS.  Yea, I know!  Surprisingly, other stuff happens in our lives too.

This evening was a rare treat. We had nothing else going on and Gary and I took Ayden Jane to the beach.  We were there a long while and I saw this rainbow up in the clouds. The sky was bright and the weather was beautiful. Far in the distance you could see a bit of a storm brewing and this rainbow was just out ahead of it and barely visible because the sky was so bright.  I had to zoom in and hope it would show up on the photo.

Over time the storm grew slowly closer. As the backdrop of grey from clouds and rain formed thicker behind the rainbow, it caused us to be able to see the rainbow more clearly.  More defined. More solid ahead of the storm.

Finally, we were chased off the beach because the wind was getting strong and cool, and the impending storm was close. This is the point, though where you couldn't help but stare at the rainbow. It held strong as it's colors shown bright 

On this day, I could not help but thank God for his promises. His promises that stand true in sunny weather and when the storms rise. He is there when things are good, but sometimes it is harder to see Him because we are enjoying life.

As the storm approached and the sky got darker it seemed as if the rainbow was staying out ahead of storm. Like the rainbow was guiding the storm and maybe even had the power to calm it.

In the end, as the winds blew and the ocean became rough and even the birds seemed to be uncertain, the rainbow shone calm and bright and strong, unwavering from the weather around it.

I choose to trust in God's promises of provision. God has provided for us on many a clear sunny day. I don't often remember to thank Him or, sadly, even notice often enough, but I know it is true. One look at the incredible people our kids have become and I know God has been there through many sunny days.

He provided in countless ways when  Ayden Jane was tiny and a horrific storm enveloped our family and our world was crashing - strength beyond measure. As Ayden Jane grew and I had so much to learn - wisdom and discernment. As the strain of me not working mounted - financial provision. As the minutes turned to hours turned to days turned to years - patience. As our little family pulled together under His guidance - love.

I hold onto His promises and am so thankful for the rainbows. I am thankful they stand out during the storms and I will be sure to look hard and find them when the sun comes out again.

Tuesday, September 2, 2014

Things Missed

I'm not sure exactly where this post is going to go. It starts with thinking about my big kids and just how big they are.  I am so very proud of the young men and women they are becoming and I have the typical thoughts of how I blinked and missed them growing up.

Only, it's more than that. This is one place having a child with special needs or chronic medical needs steals a piece of you.  I guess that sounds harsh and I don't mean it in an angry way toward Ayden Jane, but rather the frustration of one more thing Prader-Willi Syndrome has caused our family.

You see, I look at pictures of the big kids before Ayden Jane entered the scene. I remember so much. I remember endless basketball games in the driveway with Noah. I remember Kayla, Noah and the neighbor kids in and out of the house. I remember conversations and games they played. I remember Mckenna and her love of animals. I remember her having friends over and being invited places. I remember Gary and I having friends over and going places and hanging out with other families. It was all so simple.

After Ayden Jane was born it was as if I disappeared for a season. I blinked. I poured so much into Ayden Jane (and needed to) I feel a little cheated out of time with the big kids. I wish they could have just waited for me... but it doesn't work that way. They went on and grew up.

Now I don't want to make it sound like I never left the house or spoke to them... It was just that there was always a part of my mind that had to be on Ayden Jane so I was not able to fully enjoy them like I had. For example, watching Kayla's volleyball or Noah's soccer games was great, but there was no way to just focus on the game and enjoy.  You know the chatting with the other parents and cheering as if time outside of the event stopped. No, it was watching the best I could while working on stairs with Ayden Jane or navigating the concessions or just keeping her from falling. I enjoyed the games, but a piece of me was always distracted.

One thing I think Gary and I did right in all of this is that we made it priority for Gary to build/keep good relationships with our kids even though his time was more and more limited as the sole bread winner. Mostly this involved him taking them out to eat wings and watch games. Sometimes it was to see movies or just make a run to sonic for a drink. I won't really ever know how the conversations went, but it was a tradition that the big kids continued with each other even when he was not home. I also love that Noah and Kayla have extended this to Mckenna and will take her places and do things with her. I do know that there was always lots of laughter involved.

It would have been great to be more a part of their times together but I also know that for me to have been there would have made those times less carefree. I wish I had been the involved mom at the schools or sports teams. I wish I had been able to shake the worry or constant thought of how to tweak things for Ayden Jane and just enjoy the big kids.

PWS caused me to blink long and hard and frequently. In spite of that, I am blessed to have been a part of the lives of three awesome 'big kids'. I am thankful that God kept His eyes on them while I blinked.

Monday, September 1, 2014


Last Wednesday, the day after Ayden Jane had been sick, she had a great day at school.  She stayed all day and when she got home she had a quick snack and then PT for an hour.  After PT she trooped off to her room to play a bit before 5 and I woke her at 5:30 for supper.  We were going out to a little local place.

Her snack had been at three so it had been two and a half hours since she had eaten. I could hardly wake her. She typically wakes up freakishly fast like you just flipped the light switch so I knew when she did not pop up to go to the restaurant that something was up.  Honestly, my first thought was that she had gotten into a sugared drink or something. So far she hates the way she feels if she eats sugar so I haven't really had to worry about that, but we all are sort of just waiting for the hyperphasia to set in.

I kept trying to wake her.  She was super groggy but finally made her way down the hall.  Then the eyes rolled back, she lost balance and hit the floor.  I helped her to the sofa and tried to talk to her to see if she knew what was going on. She sort of did but mostly just wanted to go to sleep.

I checked her blood sugar and ketones.  She was at 72 for blood sugar which is not considered very low for most people but is obviously too low for Ayden Jane.  Her ketones were 5.8.  I don't really know that much about ketones but Dr. M told me to keep them under 4.  Whoops!

Now that I knew what was going on I just needed to get her to eat something.  JUST... I actually had to convince her, bribe her and finally force her to eat something.  It really was remarkable how quickly she became alert and reasonable after she took a bite or two.

In the end I am pretty sure that the problem was a result of the illness. I believe her body was just working really hard to recover and that plus school plus PT just required more fuel.

Now, as to why she refuses food when her sugars get low and ketones high?  I have no idea.  Why she did not ask for a snack but instead chose to curl up and go to sleep?  I have no idea. What I do know is that Momma needs to pay attention for her after she has been sick.  Don't even want to think about how far out of range she would have gotten if I had not woken her.