When there are no words

When we began researching Wolf-Hirschhorn Syndrome, I discovered that there was a community of families, whose children had this syndrome. This community is unique in that although we may never meet in person we have been able to develop relationships and be a support to each other.  These families answered questions for us and continue to support us as we unravel and figure out this syndrome called Wolf-Hirschhorn.  One of the scariest symptoms of Wolf-Hirschhorn is seizures.  Leo has had a few seizures but they have all been febrile and relatively short in length.  One of the first moms to reach out to us and begin answering our questions was Tracy.

During the last week Tracy's son Noah had a seizure which has resulted in brain damage.  The following is from Tracy.

"Well Noah is not stable enough for the port and mri. There is nothing more the Doctors can do. The brain damage is extensive, we live to far away from the hospital for pallative care support from hospital. Our ped is going to handle the care and make house calls. We are taking Noah home to be with his family. Please continue to pray for our whole family. It has been a devastating heartbreaking blow to our family. Noah may surprise us and stay with us longer that is between him and God."

So many days I function as if there is nothing wrong with Leo.  Let's just say this event with Noah has rocked my world and so many others in the WHS community.  It hits home.  This could easily be Leo or any of the other WHS kids.  There are no words to express to Tracy and her family the pain we know they are going through.  We can only pray for healing and God's peace for them.  Please pray for for little Noah and his family and his siblings.   


Remember, whether your child has a rare genetic syndrome like Leo and Noah or not, life is short.  We are not promised tomorrow.  So live for God today and make a difference in someones life.


Because we are also part of the adoptive community, which is another wonderful and supportive community, I learned of this situation yesterday.  This family knew the "risks" when they traveled.  They knew because their son was older he would have to give permission to be adopted.  I am in awe of the grace and peace they are exhibiting.  Please pray for this young man as he must decide his future by Friday.  You can go here to read and get more information so you can pray. 

Lots of little things

A quick update on Leo:  It is so ironic to hear people say how big Leo is getting.  Yes, he is getting "bigger" developmentally. Yes, he has lost his "baby" look and now looks like a big boy.  But, sadly, no he is not gaining weight.  In fact he has lost a little in the last month.  We are once again changing his eating to include a few more calories which will hopefully help him gain.  I fear we are now battling the balance of his activity level which is at an all time high and his calorie intake. 

Leo has also developed a temper, which is kinda funny.  As I type he is sitting in the high chair eating and yelling at me.  He wants to get down and go with his brothers.  Everytime one of them walk past he yells a little louder and looks at them like- hey, help me out here and get me down.  

He did well at his swallow test yesterday.  It was determined that he can safely swallow.  He just needs to learn how to swallow.  He is tending to hold food/liquid in his mouth and this is what is putting him at risk for aspirating.  Our wonderful speech therapist went to the appointment with us and was able to watch the test and is now formulating a game plan to get Mr. Leo eating. 

May is a busy month.  Two days after my birthday it is Ben's!  Ben turned 7 this year and celebrated with a mini golf party.  He started his day with breakfast in bed.

 Ben and his buddies.

 Jordan "helping" his ball in the hole.

 The boys enjoy building creations that they are able to

sit in.  They built this one especially for Leo.

Today is my birthday!  It began with breakfast in bed and then after Leo's therapists left we headed out to the Chinese Buffet a rare treat for lunch.   Amanda tried squid!  She said it was tasty although her face says otherwise.

We then headed to Dolysetown Rock Gym, where we met Mom-mom and Pop-pop.  They had gotten the kids passes to climb the walls for Christmas and we were finally using them.

Amanda went to the top!

Jonathan taking a break.

Ben did great and loved propelling off the walls like spiderman.

Jeremy was off so he got to go and climb too!

Jonathan did great and his amazing upper body strength came in handy

Practicing

Now we are off to Aunt Suzy's for a birthday dinner!

Slow and Steady

We continue to make progress.

Leo LOVES to stand holding onto something with support.

He is getting stronger each and every day.

The road ahead is a LONG one. We thank God for the progress Leo is making! Please pray with us that he continues to move forward. Leo has come so far in the last year. Friends continually say that Leo is getting so big. The fact is that he has only gained 3 pds in the past year. He has gotten taller. The most noticeable thing is that he has lost his "baby" look. He is now looking like a toddler. The big difference is that he has gotten stronger. Low muscle tone continues to be a struggle for him, but he is definitely working hard to build up his muscles.  May 22nd we are scheduled to have a swallow study done.  Leo is still not taking any food or liquid by mouth.  We are hoping that after the swallow study, the therapists will know best how to treat Leo and help him learn to eat. 

Happy Mother's Day, Kim!

As anyone who reads the Shafer family blog knows, my wife Kim is the most faithful blogger in our household.  Still, I couldn't resist the opportunity to hijack this medium and use it to say "Happy Mother's Day" to her. 

Some new wall art decorates our living room.  Kim picked it out.  It says a lot about her, I think.  Here's what it looks like:

Thank you, Kim for being such a great mom, 24 X 7, 365 days a year!

Happy Mother's Day!

Love,

Jeremy

2 Special Women

This weekend I am extremely thankful for 2 very special women who made the ultimate sacrifice for their boys.  My heart goes out to Leo's mom wherever she is as I am sure this mother's day will be especially difficult for her.  I am truely blessed to be able to call these boys my sons.  I am one blessed mama to 6 of the most awesomest kids in the world!

I found this article here Please take a minute to read it- kinda puts mothering into perspective.

Leo plays with a car

Today during therapy, Leo discovered that he likes to play with cars!

                                                                                               

if you get the blog via email you will need to go to the actual blog to see the video!

It's Good to Get Away

Last night Jeremy and I returned from a 2 night get away with another couple. It was beyond wonderful to get away and enjoy spending time together with no interruptions. The guys saw the movie The Avengers and highly recommend it and Carrie and I went thrift store shopping and just enjoyed hanging out together. Mom-mom and Pop-pop did a wonderful job holding down the fort here. We just might have to make this a yearly tradition!