Monday, April 28, 2014

Five Days of Birthday Celebration

Five days we celebrated the kids birthday... On Saturday night we went out to dinner with the family to celebrate, not just the twins birthday but others in the family...Happy Birthday Nana, Josh, Me, and Mackenzie. We had a great time. 

Sunday morning started off with our annual Easter Egg hunt with our neighbors, Mr. Mark and Ms. was great, the kids always have a great time looking for the eggs but an even better time with the surprises inside the eggs. After the hunt, Nana, Pop, Aunt Susan, Mackenzie, Josh and Devin along with Ms. Mary, Mr. Mark, Luke and Stephanie came over for some ice cream and cake. A special shout out to Icing Smiles and their wonderful volunteers for the kids "Frozen" birthday cake.

Monday was still spring break so both kids each had a friend over for pizza, ice cream and cake. So glad that Ryan and Jillian were able to join us. 

Tuesday, the actual birthday, it was time to go back to school. So we took donuts into school for their classes to celebrate their birthday as well as Earth Day. It was great to see all the kids enjoying them.

Wednesday night, some of our wonderful friends from Chai Lifeline threw a backyard bonfire party for the kids. Assembled the Avengers!

I would say the kids brought in their 11th year with a bang. Thank you to everyone for making it a special one...all I can say from Brian and I is the tween years have begun.

Sunday, April 20, 2014

Happy 11th birthday

It is hard to believe it has been 11 years since you both came in to this world... 11 years. We had no idea what we were in for that day. What a ride it has been... Watching Becca and Ian grow into the wonderful tweens they are have given both Brian and I such joy. The way they have handled our journey, supporting each other, loving each other, realizing we don't know what tomorrow will be. Oh and yes they do fight, yell at each other...even say they hate each other from time to time, but then comes back the love they have for each other, making sure the other is ok no matter what is going on.. Oh the love of siblings, twins.

3 weeks old

Happy 1st Birthday
The twins turn 2!
3rd birthday, crawling thru a tunnel
Who knows what he is doing but he is the big "3"
Happy 4th birthday Becca and Ian
March For Babies Walk....Happy 5th Birthday!

 Happy 6th birthday Ian and Becca - Fire Station Party and Princess Party. Just what they wanted.

Chuck E Cheese for a Happy 7th Birthday for Becca and Ian

Happy 8th birthday

Ravens Training Camp 2012 Happy 9th Birthday 
And Happy 10th...what a year it was....

This brings us to today....Happy 11th Birthday to our beautiful wonderful children...we love you with all our hearts.

Thursday, April 10, 2014

Leveling Out

Since Tuesday night, Ian has leveled out, Tuesday evening around 6:00, we were able get Ian off of the oxygen. He has not had to go back on since then, had a few good nights sleep as well as gone to school Wednesday and this morning. We are hoping last weekend and the beginning of the week were just bumps in the road but we are fully expecting to have more bumps in the road as we continue to navigate VRK1. At some point in time adjustments to Ian's vent settings may need to take place as well as he may need oxygen more often then not and this can happen at any point and time. But for now we will continue to take what we can get...

The new pain medicine Ian is on has been making a difference in how he is feeling, in fact I spoke with his Gilchrist nurse earlier today and Ian told her yesterday that he was not in any pain as well as one of his day shift nurses said that there is a big improvement in how many times Ian needs to be readjusted. Again, we know that over time the pain medicine may not work as well as it is, but we will continue to take what we can get...

Both kids brought home wonderful 3rd quarter report proud of both of them and all the hard work they do at school along with all the other challenges we have which are not a part of other pre-teens lives....

Continue to treasure yesterday, dream of tomorrow but live for today.

Tuesday, April 8, 2014

Rough Nights - Possible "New" Normal

The last few nights have been rough for Ian...well for the most part he is sleeping through them ... his saturation levels have dropped below what doctors as well as us are comfortable with...his levels should not go below 92-90, once this happens for about 10 minutes it is time to bring out the oxygen. Well the past 3 nights, Ian has decided to play let my numbers drop...oxygen sounds like a good thing. In the past when this has happened, he has only needed the oxygen while he was sleeping and then it is back to room air. It has not been that easy to get him off of the oxygen this past 3 days. We are looking at lunchtime before getting him off, actually today he was off for about 30 minutes, after some suctioning, he decided to drop into the mid-80's. So back on to oxygen it was. In addition, we have added a new pain medicine into Ian cocktail of meds...when asked if it is helping he will say some but it could do better. So we are continuing to increase it in order to get to a therapeutic dose. 

Last night Becca told me she was worried because Ian needed oxygen more recently. I told her we all were worried and that we were going to just continue to work through it hoping that it did not become our new normal but there is a chance it could be. Today after school, I asked her how her day was, she said okay. I asked how Ian was, she said okay but mommy he is still on the oxygen. I said I know...he was off for a little bit today but needed it again. I checked in with her to see if she has told any of her friends about the hard time he is having, she said no, if it becomes our new normal then I will but I am hoping that he is just going through a difficult time right now....

Us too baby girl, us too....

Monday, April 7, 2014

New or Old SMA Family....

B4SMA Ptions recently published another video. This one is earmarked for newly diagnosed families. It was a beautiful video, the words stuck me....this hits home regardless of being a newly diagnosed family or an "old" diagnosed family....

Yesterday, we received a note from a new mom and dad
“Our baby was just diagnosed,
With sma
We are scared.
What kind of life will our child have?
Today we reply to them like this:
Dear new parents,
Don’t be afraid.
Your child
Will be able to do many things
They’ll be able to jug you.
They’ll be able to play with you.
They’ll be able to speak
Someday in their own way.
They’ll be able to tell you just how much they love you,
They will be able to go to school
Like everybody.
They will be able to learn to read
And they will be able to tell you their own stories.
If someday they are far away,
Because, indeed,
They will be able to travel too.
They’ll return with memories of their own
They’’’ be able to help their father
Fix his hotrod.
They will be able to work.
They will have best friends
They’ll fall in love
And have a family of their own.
You will have to make difficult decisions,
Decisions no parent should ever have to make.
Sometimes it will be difficult
Very difficult
Almost impossible
But isn’t it like that for all parents?
Dear parents,
Your child can be happy,
Just like I am.
And you’ll be happy too.
Right mom?
Right dad?
People with SMA can live happy lives.
Together anything is possible.
Everyone deserves to be happy.