Thankful

I got this great idea from a blog I read call clean.  She listed 7 things she is grateful for.  I will do the same.  Thank you Rachel! clean

1. I am so very thankful for sweet, calm and beautiful Sidney. Even in the midst of chaos he holds steady. His love is forever and so strong. He loves these littles tremendously too!

2. For the five warm cuddles that greet me every morning. As the legs of littles begin to move and stretches that move the sleepiness away and whispers of "Mom" are heard I know I am exactly where I want to be.  As they climb on me and all want for an individual snuggle, it is that place where we all come together.

3. For the dirt.  During the day when my once clean children are very dirty.  It may be paint, or dirt from them rolling on the ground.  They may be sticky from fruit that has attached to the dirt.  I use to wipe the dirt off and change their clothes.  Now I embrace it.  It is a clear beacon of fun that was had. I know when they are this dirty it is due to hard play.  They have rolled outside, they have eaten a ripe pear and enjoyed its bounty of sweet juice, they have painted or used chalk.  They have been successful children.   I am to thankful for the dirt and spots I find on me.  They are symbols of love and comfort.  They are there because I am trusted, and present.  I am there to allow them to wipe their stickiness off or dirty hands rubbed on my pants.  Often it is a nose or an eye. It is all done with love. I cherish the dirt which symbolizes childhood.

4. For the happiness I see in each of my children. There can be rough and busy days, but they share so much love and joy. When one is having a hard day or needs some extra help there is always another close by to offer some tenderness.

5. For our dog Blu. He loves these littles so much.  River hugs him and kisses him more times a day than I can count. When we walk him he stands between the world and out children. If he is unsure of a situation he wraps him body around the children to keep them where he knows they are. He is a loving, smart and protective dog.

6. The fun and adventures we have. Always together and always tired afterwards.

7. Remembering on those hard days where sleep was little and patience ran short, where screaming and fighting dominated, that I love them. That they are all such beautiful people. That I am so thankful we are 7. An amazing number I never dreamed of. Each day that passes I am truly thankful. I have been given such an amazing gift to live, teach and grow with these amazing kids. Sidney, Kai, Kian, Brielle, River and Liam I have so much gratitude and love for each of you and each of our special bonds.

Liam's Diagnosis

Liam is a sweet, funny, joking, beautiful, smart, cuddly, loving, kind, caring and space loving little two year old.  We adore him and his brothers and sisters dearly.  Liam spent 41 days in the NICU mostly because of his inability to feed.  He has also received physical therapy since he was 4 months old.  He received Occupational therapy the first year which I believe helped tremendously, Judy did an amazing job with him.  Liam has been smaller with hypotonia and other issues.  He has had so many tests including MRI's, tons of blood tests, genetic tests, a growth hormone test that landed him in the ICU for the day and electrical stimulation tests an EMG.  He has been hospitalized several times for hypoglycemia and RSV.  We now know part of the puzzle.  We have an answer.  I only report this to give it a name and to bring light to the disease. I had never heard of it.  We will take this diagnosis and move forward.  We will never let it be who Liam becomes.  It is part of him and we truly believe he can and do anything.  He is so amazing!

Last Thursday he was diagnosed with centronuclear myopathy.  He has a DNM2 mutation and is autosomal dominant.  With that information he either had a spontaneous mutation or got it from Sidney or I and we are not expressing the disease.  We hope that it was spontaneous and that the other kiddos will be okay.  There are two other people in the world that have been identified with DNM2 C1102G-A. I write this hoping that if anyone else has CNM that they can contact me so we can learn more.  The disease can be mild and express itself in weakness, low tone and maybe and eventual wheelchair to severe where a child ends up on a ventilator and a full time wheelchair and cannot walk.  We know Liam is a fighter and he has Brielle and River to chase after which has kept him strong.  He has already done so much.  When he was a baby he was unable to roll over or hold his head up for a very long time.  He has made incredible progress.

We thought he was done with physical therapy, but he will continue.  We will support Liam and help him get as strong as possible and live his happy, beautiful life.  This does not define him it is just part of his story.  Keep him in your happy and strong thoughts!!!
  

A funny life...

I like most moms experience some wild things.  Having five little ones often makes life and the day go by so quickly.  Today was a funny one.  We took all the kids to Liam's doctor appointment then the plan was to go to the beach all before Sidney had to go to work at 1.  Well we all know how doctor appointments go, what I thought would be 45 minutes turned into and hour and fourty.  When I got back to the van everyone was wild and excited to go to the beach.  When Sidney was in there with everyone he had given out snacks, given water and food and lovely entertained.  I had to stop to get Liam medicine too so I knew we were losing track of our days plans.  We started to drive away from the office.  We were 4 blocks away and Brielle said she had accidentally went potty in her undies.  We pulled over in a neighborhood in front of houses.  Sidney opened the side door and proceeded to change her poopy undies.  Of course we had no baggies so he took the raisin bag that was empty from snacks and put her undies in there.  While waiting Liam was screaming hysterically and the big boys were fighting. Then as we went to go River had to go potty.  I was on the phone so Sidney jumped out again opened the side doors and took River to go pee.  We got ready to go again.  Sidney and I talked about not having time to go to the beach and Kian started to cry he was so sad.  Then as I go to drive Brielle says she has to go poo poo.  Out Sidney jumps again as I am mapping where we need to pick up the medicine.  He pulls out the potty and Brielle goes potty.  I think we were parked there for 40 minutes.  I thought to myself what would I do if someone pulled up in front of my house 20 feet from my front door and had five kids screaming, a mom on the phone, a dad changing poopy undies, a girl peeing, parents talking, a girl pooping on the potty, a boy crying.  I would think they were running their own little insane asylum.  But as we were living it, it was just life.  It may seem weird to have a potty in the car, but when you have 2 year old triplets that are still learning to hold it you have do to certain things.  Sidney and I could only laugh.  We wondering if some parents would have been sent to tears or most would laugh it off.  It was very funny.  We are headed to the beach tomorrow and the hope is we will have happy kiddos.  Enjoy your Summer Sun!!  A forever thanks to Sidney the poop king, not many daddy's would do the poop duty he does.