Saturday, October 13, 2012

1st Birthday Party

Today was Ben and Ainsley's first birthday party!  We had such a great time and I think they did too!

We enjoyed delicious cupcakes!

We had some good lunch.

We got exactly two pictures as a family - the first one Jeremy has his eyes closed and the second is blurry.  This is why we go to a professional photographer.  

We have amazing family and friends and when we asked for donations for Toys for Tots instead of gifts for the twins - they delivered!

We got a picture of all the babies on my side of the family.  We've had a recent baby boom - 5 babies in about 13 months!

From left to right: Violet (Sarah & Dan's daughter), Ben, Cooper (Joe & Jeannie's son), Ainsley, Hudson (Joe & Jeannie's 2nd son).

I printed these collages from all their monthly pictures - I love them and they'll probably stay up for awhile.

We had ears for our guests.

Here are a few of them!

 Our neighbors: Andy, Staci and Emmett

These ladies don't have on their ears but this is Grandma Betty holding Violet and Laura holding Hudson

Sarah and Dan

We had a great day and are so thankful to everyone for coming! 

Thursday, October 11, 2012

One Year Ago Today...

One year ago today we went to the doctor and were sent to the hospital to deliver our babies.

It was scary and exciting and amazing and one of the most important days of our entire lives. 

I think back to the delivery and how I cried the happiest tears of my life when I heard each one of them cry.

I think back to how Ainsley was on the CPAP oxygen and how we couldn't hold her the first couple days of her life.  That gets me more now than it did then...not sure why.

I think of all the days we were in the NICU and how we wanted to take our babies home so badly.

I think of what I still consider the worst day of my life, when we learned Ben had a stroke.  

And I think of how far we've come in 12 short months.  I think of the amazing gifts God has given us.  I think of how amazingly blessed we are.  And I never, ever want to take it for granted.  Not for one second.  

Happy 1st Birthday, Ben and Ainsley!  We love you more than words.

Tuesday, October 2, 2012

Prayers Answered

Here's a little update on Ben.

We went back to Iowa City yesterday.  Ben had an EEG then we saw Dr. Joshi, his neurologist there.  The EEG showed no signs of hypsarrhythmia which is the chaotic brain waves.  His last seizure was last Wednesday.  We are so thrilled that the seizures have stopped and the EEG has normalized.  We have started to taper Ben off the Prednisolone (the steroid).  He was up to 20ml per day and we are going to decrease the dose by 3ml every 5 days so it is going to take quite awhile to get him off of the medication.  We can't wait to be done with it because he HATES it.  I can't really blame him because it tastes awful!  It is so bitter even though we had it flavored.  It is so hard to get him to take such a huge amount of liquid - we have to use three syringes (he also gets 1ml of Ranitidine to counteract the increased acid from the steroid).

We still aren't quite out of the woods yet though.  There is a chance that the seizures could return as we start to taper the steroid.  If he has even one seizure we have to go on the ACTH injections.  Dr. Joshi said we have about a 50/50 chance that his seizures will come back because he has "symptomatic spasms" which just means we know the cause of his Infantile Spasms - his stroke.  We are praying that the won't come back but only time will tell. 

Right now we are just counting our blessings and being so, so thankful for all your thoughts and prayers.  Our prayers have been answered for the seizures to stop.  Ben has had an amazing couple of days.  He is so happy.  He started feeding himself yesterday.  He started rolling over today.  It is exciting for every parent when their baby feeds himself for the first time but when Ben put Cheerios in his mouth yesterday before we left for Iowa City I cried.  Every milestone is one worry to check off my list of things I wonder if he'll ever be able to do. 

I'll try to get a video of him rolling over soon! 

Thank you all again for all the kind words and prayers.  We can't tell you how much they mean!  Thank you! Thank you! Thank you!