Thursday, August 30, 2012

Good News

A lot of 'extra' things have been going on in the background lately.  First up, I have been trying to find work that provides a bit of extra income and still makes it possible for me to handle all our families needs.  Today I spoke with the director of Ayden Jane's preschool.  She has a plan to pull small groups of children from the classes to work on some extra skills.  Things like sensory based thing, gross motor and fine motor.  Yep, a bit of PT and OT mixed into fun for all kids.

Originally, someone was to head up the program but she has since taken another job.  Enter ME.  I will be working there 4 days a week and will be putting all that I have learned with early intervention ect. to good use.  Time to grow some little brains, make some neurological connections and improve some skills!

I have a couple of weeks to put the program together so please feel free to throw any ideas my way!

Next up, I had a TEFRA reeval today.  That is what SC calls the Katie Beckett program.  This program provides medicaid to people who may not qualify under financial reasons.  Basically, if the level of care needed for the child/person is high enough due to the disability medicaid can be given to help with medical expenses.  In our case, Gary has good insurance, but it is a huge help (and stress relief) to have some added help with all the copays for meds and appointments to specialists and lab work...

Basically, a nurse who works for the state came to interview me and see Ayden Jane.  She listened to all that goes into caring for Ayden Jane.  Also, AJ cooperated nicely by getting totally stuck in conversation and panicking at one point about something tiny and tripping.  We talked about the safety concerns including food, no fear and 'eloping'. All the necessary therapies.  The orthopedic things we have going on right now with her orthotics, scoliosis screening and posture.  Add in eyes, immunology .... all of it.  She says she does not see any reason that AJ will be dropped from the program.  I hope she is right!

All in all, a good day I'd say.

Tuesday, August 28, 2012

First Day Back to School!

Ayden Jane is back at the same preschool she attended last year.  It is an awesome place and they just love her there.  She started the 'froggy fours' today and was so excited to go.

We did hit a bump in the road but I choose to turn it into a good thing.  I had not planned on walking her in but she needed to go potty upon arrival so...  When she headed to class, I saw on the table as she entered big trays of cupcakes.  I saw her teacher and I think she could read the look of 'seriously?' on my face.  She said they did not know the cupcakes were coming ...

I saw the Mom who brought them and I did not do a good job of hiding my frustration.  (Need to go mend that fence soon).  Now her twins have been in AJ's class for 2 years so I asked told her politely that she has got to let the teachers or me know if she is going to do that.  Her twins birthday was the day or two before so she thought it would be great to celebrate at school.  I had not yet stocked the school with dark chocolate or cupcake muffins in the freezer (didn't think I would need to deal with it on day 1) so I zipped off to the store.

Okay, I choose to take from the situation all positives.  The mom said she didn't realize Ayden Jane had a problem.  I know that she has heard in the past and that she is around the school a lot so I will take it as an incredible compliment that AJ fits in so well she forgot all about PWS.

Positive 2:  Her teachers told me that not only did they not know she was going to do it today, but that it is their policy not to have cupcakes or such sweets at all.  Score!  They will make sure I am aware of all party situations.

Positive 3:  I told Ayden Jane what was going on and that I would be back with a treat of dark chocolate for her so she could celebrate her friends birthday with them.  She said, "okay Mom, but don't bring back a whole bag because I might eat them.  Just one."  She is awesome.  She breezed through the party eating her snack of nuts and her bit of dark chocolate and had a fantastic first day.

On the way home I asked her how she liked the froggy fours.  She said it was just okay and asked if she could go back to bee's threes.  LOL.  

Wednesday, August 22, 2012


Mckenna had her first day of grade 6 today.  She had a good day.  I know her teacher well and Mckenna will have a great year.  Soccer is lining up nicely and there is some carpooling going on so it should be easier than in the past.

Noah is a senior and so far it looks like a great schedule for him.  He can drive so extra curricular stuff like sports and work doesn't get nutty until he has games and things I just don't want to miss.

Ayden Jane.  Now there is our scheduling project.  Extra things going on right now include trying to coordinate orders from Florida, Florence SC and MUSC for lab work to be done in one draw.  Not going great so far.  One more trip to Mr. Alan when the knee brace comes in.  Scoliosis xray orders are waiting at the hospital for us.  We have an endo appointment on Fri.  at our 'local' endo. (2hrs.)  And an eye appointment soon.  It sounds like a lot, but it will get done and then we should have a good break for a while with all the extra stuff.

Now to the weekly things.  Preschool is Mon. - Fri. 9 to 12.  Horses is Tue. night.5-6.  PT Wed. 1-2. Working on scheduling ST for 45 min. per week.  OT for 45 min. per week.  Ayden Jane is also determined to play soccer like Mckenna and Noah so I have no idea what night she will practice (although I am rooting for Mon. or Thur.) and then she will have games on Sat. morning.

So, on any given Sat. I could have as many as 3 soccer games going on at the same time in 3 different locations!  Craziness!

(But I love it)

Monday, August 20, 2012

Jump Highers

We went to see Mr. Alan today to get our new orthotics.  They looked huge!  I guess that happens when you get them made once a year.

This first picture is of the top view.  You can't see the letters, but they say dafo.

This picture is of the bottom of the left foot.  You can see that the back 3/4 of the insert his molded in a hard plastic.  The white part is where Mr. Alan has customized it for Ayden Jane giving it extra support to keep her from pronating.

This last one is of the right foot.  You can see Mr. Alan had a lot of work to do on this one.

Mr. Alan also checked her knee and agrees there is a lot of laxity and poor tracking of her knee cap.  He measured Ayden Jane's knee for a knee brace.  AJ was so excited because she got to pick the color, purple of course.  I am excited to see the changes in her run over the course of the next month or so.  Even watching her on the swing tonight she was internally rotating that right leg something awful.

I am so thankful we have Mrs. Jen and Mr. Alan taking great care of her.  As new things pop up they handle them before they ever become big things.  AWESOME.

Sunday, August 19, 2012


When Ayden Jane was little her fine motor skills were good.  She could pick up even tiny things, she could twist and move things however they needed to go and she could even do a pretty good job of making the signs she needed at the time.  We basically just had PT with Jen who is also covered much of AJ's OT needs at the time in the area of sensory needs.

Through Ayden Jane's 3 yr old preschool year we started to see a divide in her OT skills compared with her peers.  Cutting was frustrating, holding a pencil even remotely correctly was hard, making the shapes she wanted to when drawing?  Impossible.  All this made AJ mostly just avoid these activities or at the least work on them for very short periods.  Enter an OT evaluation which led to her receiving OT from Mrs. Stella at the end of last school year.

I am excited that recently Ayden Jane has had more of an interest in being able to do these things.  I haven't pushed as I know we will be back in school soon and she will begin to work with Mrs. S again, but I have to admit I am really excited!  I guess I know that if AJ wants to do something bad enough she will make it happen.  Once the basic patterns are laid she will build on them over time.

Here's to the excitement of a new school year!

Friday, August 17, 2012

Crazy Right Side

Soooo much to catch up on with Ayden Jane.  For tonight, straightening out the right side.

Over the summer of barefoot fun, we have noticed some trouble with Ayden Jane's legs/posture.  She spent the summer out of her orthotics and did great at first.  We have made the trip to Mr. Alan to get her new inserts made and Jen was checking things out closely last Wed.  Basically, she feels that the right leg is internally rotating at the hip and AJ has gradually caused it to go far enough to change the track her patella is taking over her knee.  Great.

She had her stand in her old orthotics, taped up her leg, did some exercises... and started to turn on the muscles AJ has apparently been avoiding.  Ayden Jane's entire posture changed!  The shoulders were straight, the belly pulled back in, her hips were in a good position, her feet looked straight.  Wow.  I continue to be amazed how Jen can find the one thing that causes a host of posture issues!

The result?  On Monday when we take AJ to see Mr. Alan and get her new orthotics, he will check her out, measure her and make her a little knee brace for 'training'.  Jen thinks that she will not need it long and she will start taping her on Wed. before it ever comes, but she wants to protect those little knees from future issues.  I am looking forward to seeing the more athletic look to Ayden Jane's run return.

AJ has also had some very intermittent right eye strabismus.  We will see the eye doctor on Sept. 10.  I have no idea if there is any issue with her vision or if there is much you can do with something so intermittent.

The whole right side things is just so odd.  Since Ayden Jane was tiny and Jen started working with her, it was her left side that was always behind the right.  I guess she loves to keep us guessing!

Kayla Turns 19

Yes, as Ayden Jane prepares for 4 yr. old preschool, we are celebrating Kayla's 19th birthday!

It is hard to explain, but last year as we celebrated her birthday, she was preparing for her first year in college and still seemed as much a high school student as a college student.  I guess, it is that she seemed still more a kid than an adult.  As we pause today to wish Kayla a happy 19th, I have to admit that she is totally a college student and more an adult than a kid.  Those words hurt my heart and make so very proud all at the same time.

Kayla is filled with passion and compassion.  She has big plans and I have no doubt she will find an incredible path.  I enjoy hearing about the people and places that hold her heart and mind now.  I look forward to watching and listening as she continues to follow God's plan for her life.  It is such an exciting time.  The world is wide open.

I couldn't quite finish and post this on her birthday...  Looking at old pictures and things.  A life time and an instant all in one.  I just love this picture.  Mostly because it is pretty much how I remember her being when she was little. All smiles and always holding "Kayla baby".

Monday, August 6, 2012

Crazy Couch Kids

They're sort of fuzzy, but here's a couple fun pics from an average day.  Ayden Jane is always wrestling on someone!

This picture is of Ayden Jane's newest self imposed challenge.  She wants to start rollerskating.  So far we are sticking to the carpet (today was day 1).  It is an awful picture, but she is so stinkin' cute that it all evens out.

Saturday, August 4, 2012

Adenoid Update

Well, we are now 5 days post adenoid removal.  Ayden Jane is doing great.  We have had some unexpected  things this week, but it is Ayden Jane so that is not surprising!

First up, fluid reduction.  I have been amazed at the amount of fluid that has come out of this kid.  For the first couple of nights we are talking 2 full pull-ups and getting up right away to go again in the morning.  That seems to have stopped and I don't see a big difference on the outside.

Next up?  Hearing.  I had no idea that Ayden Jane was not hearing very well.  I really thought that a lot of her asking us to repeat things was because she could not focus well.  This week has shown me that she just didn't hear us.  I don't think I have had to repeat myself all week!

Energy.  She has soooo much.  I can only guess that somehow the removal of the adenoids has her breathing better at night maybe plus the reduction of fluid/inflammation and the result is like getting a bump in gh.  She has outlasted her usual self at the beach and is amazingly able to fight sleep at this point.  (yes, there is good and bad in that!)  By this morning after such a crazy day of activity yesterday and staying up until nearly 10, I was joking that I wanted to ask Dr. White to but them back in!

I am looking forward to things leveling out in the next week and seeing what the true results will be.

Friday, August 3, 2012

National Champ

Well, here he is.  One happy boy!  I have a couple of great pictures of the whole team, but for blog use I think this covers it.  Noah is holding a National Championship trophy he helped win!  He had an amazing week with some amazing kids with unbelievable stories who embarked on an impossible mission and actually saw it come true.

Honestly, this could be the next feel good family film.  So awesome that Noah could be a part of it.  So proud of my boy for taking his talents, both on the soccer field and with people, and jumping into the unknown.  He headed on a trip to Chicago to play with kids he had never met who were from totally different backgrounds and were quite the underdogs.  A band of inner city kids from several different countries (Argentina, Mexico, Columbia, Somalia, Vietnam just to name a few) joined through and inner city ministry and a love of God and using soccer as a path to honor Him.

Congratulations Noah!