Life is a Journey

My son, Alex, is 3 1/2 years old. He was diagnosed with Mowat-Wilson Syndrome at 5 days old. My son, Aaron, is highly active, extremely creatively bright. My daughter, Sydney, is verbal, talented, and snarkily beautiful. I have so many thoughts about life.... they don't hear me now.... maybe they will someday. :)

Thursday, January 12, 2012

Rest of the Week... Jan 9-15

Wednesday, January 11.  Alex had home therapy with M. from Infant Toddler Services, and K. from CCVI.  Grandma Tish watches Alex on Wednesday, and stayed when she brought Alex home so she could stay updated.

  1. We talked about Alex's sleeping pattern which is messed up right now.  I brought up Melatonin.  Thoughts were mixed- could really help, could send Alex into early puberty messing around with his hormones.  This idea brought up the need to test Alex's hormones.  K. discussed Optic Nerve hypoplasia  being a catalyst for early puberty and if we are going to give Melatonin we need to make sure we know where his levels are at.  
  2. Concerning crayons- take off the paper.  Tape to light box.  Wait till Alex touches the crayon, then make it move and make a silly noise.  If his hand releases, the crayon stops and so does the noise. 
  3. Prime Alex before asking him to work hard, use his hands, etc...  Deep compressions, joint compressions.  Idea is to know where his body is in space.
  4. Don't forget to use weighted vest when he is sitting to play on his desk.
  5. Use, "NO BITE" when he is wanting to mouth or chew on things like furniture, people, and expensive electronic equipment.  Push up under his nose with the length of the your finger.
  6. Use Model Magic sparingly until Alex is more comfortable with the texture.  Use it to hold up the pop-beads or the pop-bugs.
  7. Turn off all lights in Alex's room to sleep.  Even the aquarium.
Action:  Call Dr. M for blood work.  Call B to get copy of Alex's IFSP.  

Thursday, Jan 12.

So, I am in the process of getting Alex on the waiting list for the waiting list to get him in home services and myself some respite care when he is older.  There is this long intake checklist and each time I tick off one of the boxes I get ecstatic!  I am just waiting for his IFSP right now.

I took Alex to Dr. K today.  She is the world's most awesome Chiropractor.  She's been helping me sporadically with Alex, but I am hoping to just incorporate our visits into my therapy mindset.  Call it- Pop Therapy, or Adjustment Therapy.  I am still positive that if she continues to treat him, he will gain more use of his arms and hands.  Something is just blocking that signal.  She said his pelvis is more limber this week- yea!!!

Speech therapy with S. today.  Alex's music therapist E. joined us too.  We set two pictures representing the songs we use in class on the light box.  The first 3 times he picked the left picture.... then S. placed a pic that was not one of his favorites, and he did end up using his right arm to pic the right pic.

Aqua therapy with D.  Alex did a lot of bouncing in the water.  Cracked me up.  He is still reluctant to use his hands too much... This is going on 2 to 3 weeks now.  Perhaps his great gains in gross motor are more pronounced right now and his body is focusing on that.

Occupational Therapy with J.   I love J.  She is always trying new things with Alex to get him to use and make functional those darned hands.  We tried Therapeutic Brushing.  While I think the brushing with the joint compression would be ideal.... I simply can't remember to brush him every 2 hours.  So, on to the next trick.  Therapeutic Listening!  Therapeutic Listening is hopefully going to help.  We will try it for 2 weeks, 2 x's a day for 30 minutes at a time.  J asked me to list 3 to 5 things "sensory" things that I would like decreased.

  1. flinching when objects come near his face/head.  I.E. more tolerance to me putting on his shirt.
  2. allow his body to rest at night... decrease the number of times he wakes to play.
  3. increase the length of time he is willing to hold a toy
  4. decrease need to mouth
I will need to remind myself to watch for these things periodically.

Oh, and Dr. M appt at beginning of February!  Love my pediatrician!

Friday, January 13

Alex had class today.  It is a 2 1/2 hour continuous therapy experience....
We start with play centers targeting several skills.  There is a "house play" area, sensory table, pretend play with animals, trucks, trains, dolls and doll houses, a light box exploration, an art project, a drawing/coloring table, a fine motor area.  Next is a speech time where we sings songs and explore objects usually with sign language.  After speech, we have snack.  Following snack time, we go to music.  And at the end of our school day, we go to Physical Therapy.

So with that recap, yesterday we had Alex standing for part of the Centers/Speech time.  The Squiggle Stander allows Alex to have static standing time.  G helped get him set up and he looked really good.
One of Alex's favorite friends brought snack- crackers and cranberry sauce.  (Our teacher makes a snack list with foods we are to bring... they provide an array of tastes, textures, tartness, etc)  Alex can be counted on to like pretty much anything that is brought.  He LOVED the cranberry sauce.
In music, Alex used avoidance again as a way to communicate his preference to E.  Bless her heart, E is so patient with him and just allows him the time he needs to make a choice.  At the end of music, we look at the stars.  Alex knows this is the end of music; he started crying.  During PT, the focus was getting from a seated or kneeling position to standing.  So exciting as Babe was able to hold onto the ladder (which lays horizontal) and pull up all on his own!  Fridays exhaust him, and we went home and both took a nap!

There are so many experiences that the kids and I would never get to experience if Alex wasn't who he is.  The woman who wrote the article about Syd and Alex works at a place called MyUbby.  Her boss has worked out a deal with the magazine and when Melina writes and article, her "subjects" get to make their own blanket!

My bigs were able to help Alex pick out the two fabrics, the color of thread, the font, what to write on the blanket, and the satin border.  We were allowed to go into the machine room and watch the entire process from start to finish.  It was amazing, and we all had such a great time.  The owner's children were there and were amazing ambassadors.  A touching experience to say the least.

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