Taking Life for Granted

     An old friend from high school just recently wrote to me and said, " so many times we take life for Granite."  That is what brings me to this next post, a grateful reminder of not taking life for granite.  Many of us do take the good things in our lives for granted, our mate, our children, our home, the list goes on. Most of us don't stop to think "what would happen if I lost this or that.   We only think of what we have or had, when it is gone or simply diminished.
    I look back now at my life, and realize how much I took it for granite.  Especially with my children, Lexi and Austin.  I remember when they rolled over, crawled, sat up, walked, and talked, but didn't spend much time realizing how wonderful it was.  I took the small stuff as no biggie.  But now that I have a child with special needs, (Madilyn) I have come to be grateful for those little things.  It is important to cherish the small moments of each and every day spent with them.   
     So what should we do, spend our lives feeling grateful? The answer is yes. You can show that you are grateful for what you have by being kind and generous and teaching your children to be the same. Though that sounds simple, people often cannot master this way of thinking. This may arise from the idea that life owes us at least what we are now receiving. Sometimes we feel life owes us more or better than we are receiving. If that's where you are now, or feel that you are reaching that point take a day off and enjoy some "never take anything for granite" time.Take time out to acknowledge
the smaller good things in life; do it alone or grab your kids, your spouse or a good friend and go to the zoo, take a bike ride or a walk to enjoy the beauty of nature. 
“When something does not insist on being noticed, when we aren't grabbed by the collar or struck on the skull by a presence or an event, we take for granted the very things that most deserve our gratitude”
-Cynthia Ozick

Laughter

      I've been thinking a lot about this post, and really feel it is one thing that has helped me survive life, "Laughter."  I've relearned this valuable lesson through Madilyn, and have gained a better understanding of its importance. It is my new found healing agent.
    Madiliyn has just recently found her gut laugh, and boy is it loud. She is starting to laugh more and more at the silliest things.  When she laughs, you can't help but laugh with her.  This has brought me to know the importance of laughter and why we need it in our lives.     
   Back in college I remember attending a talk by a professor who spoke about laughter.  He said, "If you can find laughter in anything you can survive it."  Laughter allows us to step back from an event, deal with it and then move on.  Every laugh you manage, cuts short the miles and hours and days of hardship.  I truly believe it has helped myself and my husband get through challenging times in our marriage.  You cannot be mad at somebody who makes you laugh - it's as simple as that.
   A good laugh brings sunshine into the home, and that is just what Madilyn does.  Thank you everyone who has made me laugh, my kids, my husband, friends, family, parents, TV Shows, church members, and most of all my little Madilyn. 


Poem by Linda Chew called "Laughter"
Laughter they say is the best medicine.  I'd say I have to agree when things get heavy and things get tough putting on a smile is not enough.  You really need to set yourself free, enjoy a good laugh a roaring laugh, hee-hee.  A funny joke may do the trick, holding things in proves to make you sick.  Don't take life too serious, it might just make you delirious.  So take some time and relax.  I've already gathered the facts.  Join some friends.  Laugh your best.  Life will be easier for all the rest!

Madilyn Loves Books

     Madilyn loves reading books with her brother and sister.  It is so funny how much she enjoys reading with them.  I would say it is her new favorite activity to do and loves sitting in her new special tomato chair while reading.  This chair is awesome, and helps her sit upright without slumping over, and floppy head.  Check out AdaptiveMall.com for information about the Special Tomato Chair.  It is very mobile, can be placed on any chair, and inserted into certain strollers. It has a 5 point harness so I don't have to worry about her falling out.  Great investment number 3

Results are Back!

    Today was the day we received the first set of results from Madilyn's Genetic/Metabolic doctor.  They are all normal, except for her Lactic Acid levels which he will retest . Though this is suppose to be good news, it isn't really cuz all it means is more testing.  These first test he ran are more common type things, and now as we get more and more into testing, it gets more expensive and more difficult.  Difficult because now he starts testing for more rare, and disease type disorders. 
    He looked over Madilyn again, and examined her to see if she had any abnormalities which she does not.  He also discussed having another MRI done when she is around 2 1/2 to look more detail at her brain matter to see if there have been any changes.   That being said, mixed emotions are running through my head, and I'm getting more doubtful we will ever find out what is wrong with Madilyn. 
     The doctor then discussed the next battery of test he wanted to run,  which meant more blood work, which equals IV team.   Last time they couldn't get her blood to flow with just a regular poke so they had to call down the IV team.  Of coarse that is what they had to do again today.  This time they had to get 6 viles of blood, 14 ml's and for her weight she can only have 16 ml's taken. She was almost at her max of how much blood they can take from her small body.
       It was horrible, the IV team had to poke her twice cuz the first vein on her left hand collapsed.  She was shaking, screaming, and arching her back.  It was not a pretty sight for any mother to have to see, but I stayed strong and stood by her side.  Daddy and her Aunt L were waiting outside of the room, but kept checking to see if I was ok.  There was a moment I about lost it, when they had to pull out of the vein and start again. 
     Another waiting game which never gets any easier.  Last time I kept calling and calling wondering when the results were going to be back.  I just need to stay patient and calm.  Some of you might wonder when is this all going to end.  My husband did ask the Doctor today when we should call it quits, and he replied, "you want to know, and you should know, and really it is just a waiting game."  So basically not until we know.  My husband and I's answer to that is,  we want to know if there is something we can do to help her, but don't need to know if it is just going to put a name to it. 
    I just want to thank all of you who have left comments, and who have prayed for us and Madilyn.  You are all so very sweet and we appreciate your thoughtfulness.  This isn't an easy road, but feel blessed to have family and friends who are there for us.  Like always we will keep posting and keep updates on Madilyn's progress! 

This was after blood draw, she was so pooped!

A Big Week

    The day is finally near, the blood work results from our Genetic/Metabolic doctor will be here on Tuesday.  Madilyn also will be going to her first PT/OT appointment at Shriners tomorrow, along with her Sleep Study at Primary Children's. As you can see it is a big week for our family and Madilyn. 
     I don't know what I am feeling right now being just 2 days before getting results back from the Genetic doc.  Nervous, scared, anxious, excited, worried, impatient, however you want to put it, these results could change our lives.  The genetic/metabolic doc did say it is possible the blood work will be normal, and that being said, he will test Madilyn for more DNA type conditions and Syndromes which could get pricey.  I really trust Madilyn's Genetic doc and feel he has an amazing medical knowledge.  I truly feel he will find the answer to what might be causing Madilyn's Delays and Hypotonia. 
     I feel strange right now, a numb feeling really.  A peace I guess you could say.  What ever the next step is for us, I've got to keep positive, and have faith.  Those are the things that keep me going on this seemingly long medical path.  Heck if Madilyn can do it, then mommy can.  Please Heavenly Father let it be good news, let it be safe, let it be something my husband and I can handle.

Madilyn Trying to Sit in Bumbo

Madilyn has a bumbo seat and we have never really put her in it because it is too much work for her, and she gets really frustrated.  I thought I would give it another try to see what she would do.  It breaks my heart seeing how difficult it is for her to even sit in the bumbo seat.  She struggles to keep her head up, and it seems to take alot of effort on her part.  Poor thing, just the simplest task are so difficult for her.  She was so pooped after she sat in the bumbo for no more then 5 minutes.  She took a 2 hour nap after this.  I guess I figured out how to tucker her out!   

Madilyn's Version of Dancing

This video cracks me up.  A couple weeks ago I started to sing this song, I think it is the Utah fight song (don't tell John it isn't BYU), anyway I would sing it and Madilyn would nod her head on que.  Who would of ever thought she would be dancing to Utah's fight song.  Here she goes........................................................................

New trunk Orthosis

    Madilyn received her Trunk Orthosis today, and wore it for the first time.  Just from today, I can already tell it was a good investment.  For those of you who read my blog a couple weeks ago, Madilyn had a SpioSuit, another type of orthosis.  It didn't work all that great, and felt she needed something with more support.  We did our research and decided to get her the Benik Dynamic Trunk Orthosis Vest. 
    The Benik Dynamic Trunk Orthosis Vest is a two piece body vest constructed of 3mm ventilated neoprene and is terry lined for comfort. Vest provides upper trunk support and proprioceptive input.   It comes in many other colors but we decided to go with the hot pink, flashy and bright.  She is suppose to where it all day except night time.  Hopefully it will give her a little more stability and help her not slump over while trying to sit.  We put her against the couch in her orthosis vest, and when she would start to fall, she laughed and laughed.  I sware she was falling on purpose just to be silly! 

Flashback During Pregnancy with Madilyn

     Today I was thinking alot about my pregnancy with Madilyn, and how it was so difficult.  When I went in for my first ultrasound at 13 weeks they saw a cyst on her umbilical cord, and they were very concerned about it.  They really wanted to keep a close eye on it because they weren't sure if it would affect her growth in utero.  At that point they weren't quite sure what kind of cyst it was, and thought possibly it was a sign of down syndrome or trisonomy.  I went in every 4 weeks for ultrasounds to check the blood flow from me to her in utero, and to track her growth.  Towards the end, 32 weeks on I went weekly for stress test to check her activity in utero, and any sign of distress on baby. 
     Madilyn didn't move much during the pregnancy so I was always concerned.  There were many times I thought I had miscarried.  Around  20 weeks we did the maternal Serum Screening which identifies pregnancies at higher-than-average risk of certain serious birth defects, including neural tube defects, like spina bifida, and chromosomal abnormalities like Down syndrome.  The test came back normal, so we didn't do the amniocentesis.  At the beginning of my pregnancy I was also put on baby aspirin, and progesterone.  I had 3 miscarriages prior to Madilyn so these medications were a precaution to try to prevent miscarriage.  Sometimes I wonder if the aspirin or progesterone could of caused some of Madilyn's issues.  I also wonder if the cyst on her umbilical cord caused something in her little body not to develop right.   I do catch myself going back in time when I was pregnant with her and wonder if there were any real clues to what could of been wrong.
   Madilyn to our surprise came 3 weeks early weighing in at 6 pounds.  Along with the doctor, we were expecting her to win a trip to the NICU because of the unknown cause of the cyst, and being early.  The doctor was really anticipating her birth because of the mysteries cyst on her umbilical cord.  To every one's surprise, Madilyn came out kicking and screaming, and looked normal in every way.  The doctor examined the Placenta and sure enough there was a cyst the size of a  golf ball attached where the umbilical cord inserts into the placenta.  Doctor had never seen such a thing, and decided to send it off  for pathology.
    Madilyn didn't nurse all that great at the hospital, but everything else seemed to be fine.  She came home with us 3 days later.   I do catch myself often thinking back to the pregnancy and wonder what it could of been that caused her hypotonia, and development delays.  I realize I may never know, and know it may not of  changed the outcome.  It is kinda ironic cuz I was  one of those woman who watched what I ate, drank, and did during pregnancy.   I always took my prenatal's, and did exactly what the OB told me to do.  Then you have those who don't do any of that, and never have a difficult pregnancy and have healthy babies. 
I guess going back in time doesn't help much other then remembering the good that came from all of it.  I did get a beautiful baby girl, and she is a miracle!  She is a little drop of Heaven and reminds me everday that heavenly father is near! 

RSV Go Away

Madilyn has been really sick the last few days, along with the rest of the family.  Anyway, she officially has her first case of RSV.  The doctor checked her oxygen levels, and they were below normal, and as for her breathing, it didn't sound good.  So she has to use the neubilizer every 4 hours with Albuterol treatments.  Poor girl, she is such a trooper, and I just hate when she isn't feeling well.  She really hates having the neubilizer mask on for 20 minutes at a time, and cries during the treatment.  We have to be super careful cuz for Madilyn it can easly turn into pneomonia.  Hopefully this will help her breathing and we can avoid having her stay overnight at the hospital.  RSV is the pits! 

Preventing RSV

Because RSV can be easily spread by touching infected people or surfaces, frequent hand washing is key in preventing its transmission. Try to wash your hands after having any contact with someone who has cold symptoms. And keep your school-age child with a cold away from younger siblings — particularly infants — until the symptoms pass.

Thank You

    I just wanted to thank all of you for your sweet comments, and prayers.  It is through others and the lord that I have been able to survive this challenge in my life.  Some of you have made comments on the strength I have, but really it comes from the support and love I get from all of you.  We still don't have results yet, but hopefully soon.  Are little family has been sick with some type of cold virus, so I haven't been feeling up to posting much.  Madilyn has a little cold herself, but we try to keep her indoors, and away from other germs.  She has stayed pretty healthy this winter considering the fact that she has low tone.  Her doctors are always surprised how healthy she has been.  Madilyn is a little fighter that is for sure, and she remains my hero.  Thanks again to all of you who have been there for our family and Madilyn!!!