• My Family

    Blessed by the Lord for the Joy of family!!

  • Rachel’s Daily Cystic Fibrosis Medications

    Albuterol (2-4 x)
    Hypertonic (2x)
    Pulmozyme (1x)
    Glutathione Inhaled (2x)
    Advair (2x)
    Prevacid (2X)
    Ursodial (2x)
    Glutathione oral (3x)
    L-Arginine (1x)
    Acidophilus (3x)
    Vitamin (2x)
    Periactin (2x)
    vitamin d3 (1x)
    Cal/Magnesium blend (1x)
    ADEK (1x M,W,F)
    Creon 12 (6 with meals and snacks)
    Vest (2-3x) 30 minutes
    Percussion (30 minutes)
    alpha lipoid acid (1x)
    singulair (1x)
    fish oil (1x)
    nasonex (1x)
    zyrtec (1x)
    azithromyicin (M, W, F)

  • Recent Posts

  • Monthly Archives

OT Appointment

Well, first off I have to apologize for it taking me so long to post.  The last few days have been crazy busy!  Wednesday, the day of the appointment, I was literally gone from 9 something till almost 9 something with just a few moments to touch down before we left again.  Yesterday morning I was busy making sure to get a solid day of school in for the kiddos.  Followed by a looong afternoon of making calls and gathering items for the auction.  So, sorry for the delay.

So for the appointment.  There were several really good things that came out of it.  She was evaluated and diagnosed with low muscle tone in the muscles around her mouth.  We were given several exercises to help with that…albeit something that will take up to 30 minutes to do a day=(.  Thankful for something to do that will help, but sad that it is yet another time involved thing.  The second thing that the therapist clearly noticed was that she has some interesting chewing patterns.  Most of her chewing was a “chomping pattern”, compared to a grinding pattern, which fatigues her jaw.  The difference is that the chomping pattern is just an up and down “energy waster”, and it doesn’t really chew up the food, verses the grinding that breaks down the food and makes it safe to swallow.  AHH HHAAAA!!  One of the reasons that it takes Rachel 50-60 bites to get food down and 45 minutes at every meal!  So, we are strongly encouraging her to do the grinding bites and only about 20 chews per bite and no more.  IT WILL BE A SLOW PROCESS!!!  We will have to do facial stretches like I said everyday for 15 or so minutes two times a day.  We will also have to start building up the muscles Rachel’s jaw.  This consists of getting her to eat foods that challenge the muscles…aka are difficult to chew.  This will be difficult to find things that she will want to eat like taffy, beef jerky, and licorice.  They gave us a chew toy, (looks like a dog toy) for her to practice chomping on if she won’t eat because it will greatly fatigue her jaws and build it up at the same time.  Soooo rather than chewing on a toy, I am going to really look hard to find FOOD that she will EAT that has a dual purpose.

I am excited that there were some actual things that we can do to build up her “eating muscles”!  As stated by the therapist,  “The challenge will be to find a time to practice stretching around her mouth(mini botox exercises), and building up the jaw muscles so that she can finish a meal easily with out fatiguing her mouth…AND all of these need to be INDEPENDENT OF MEAL OR SNACK TiME!”  So, the next few weeks will be another challenge of fitting therapy into our day, but it is SO WORTH it to know that there maybe some things that will help Rachel have an easier relationship with the amount of eating that she needs to do each day for her health.  I will try to update as things procress.

Thank you for your prayers and concern.  It is greatly appreciated!  God is good.

 

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: