oh Boston

I have a love/hate relationship with Boston. Its an awesome city. But so far away...not really...but that hour and a half seem so long! And I always get lost...somehow. I dont know how I get so turned around so quickly:) But I am thankful we are going just once a month rather than once a week.

Anyway. We had our monthly venture down to beantown today. We picked up some cannolis at Mikes. Got lost. Made it to Children's just in time for K's G/J change....and then headed home again...and missed most of the traffic.

Love Boston cause they saved K. Hate Boston cause I get lost. Love wins for sure:)

Swallow Studies

Little Men both had swallow studies today. Our awesome Speech Pathologist, Karen, set up the appointments and helped assist in them. I have to admit, I was SUPER nervous to do the swallow studies. Both guys have trouble swallowing liquids. K has a G/J tube for ALL liquids and he eats food by mouth. K. loves loves loves to eat! Food motivates both boys in their slowly progressing skills and movement.

K. has been getting over a particularly nasty virus - he's been so junky and has been vomiting and needing oxygen so I was even more nervous to do the swallow study today.

Karen met me in radiology and after our typical battles with admissions and consents, we finally were able to move forward with the study. Karen convinced me that even if K. aspirated all foods - it wouldn't mean he would never be able to eat again since he was sick his swallow wouldn't be the best but it would also be beneficial to know how to go forward with his feeding when he is sick.

(Sorry long story) Anyway. K went first and he did SO GOOD! He swallowed all the foods so well. He does have a delayed swallow - meaning he swallows when he moves the food to his esophagus rather than on the back of his tongue....(think I explained that right) Then we moved forward with testing him with Honey Thick liquids - really thick liquids basically! So with the help of Karen, we will move forward with introducing these thickened liquids into his diet. Obviously it won't replace the fluids he needs from his G/J, but its a start. For K. I feel that his chronic congestion is not from foods penetrating his airway. Good news...now if we can find WHY he is always congested/junky besides his laryngomalacia dx.

Mr. I. on the other hand, didnt do as well on his swallow study. He penetrated all liquids - which means all the liquids he drank penetrated his airway. He didn't aspirate them - the went in the airway and then he forced them back out - but its not the best scenario. Basically, he is at a higher risk of aspirating (which he has done in the past) But, we will work with him to drink with a straw which would be safer. While eating all his foods, he leaned forward a little bit before he swallowed, which aided in him safely swallowing all his foods. He did a great job with that and safely eats solids. (great news there!) If we can have him drinking from a straw, we think he will do better at not penetrating his airway and hopefully help with his congestion levels.

So long story....but glad we got the studies done and the boys did pretty well!

family

Took a little drive.

Ended up in Virginia.

Saw my mom and dad.

Took lots of pictures.

Ate outside

It was warm.

No snow.

not that I am counting

but we are 11 days away from being hospital free for 7 months! Weeehooo.

I visited a little one on the pedi floor two weeks ago - and I didn't know all the nurses and they had a new doctor. So we better not have to go back. I am quite content NOT meeting new hospitalists.

But seriously, praise God for a healthy winter! The boys and Morgann have all had this never.ending.cold since the beginning of January. Just snotty/coughy-ness. But they have done well with it. In fact, Miss Morgann is the one who is most bothered by here nagging cough.

Lord willing, we will be heading down to VA again for our February vacation week. I am looking forward to seeing my momma who is recovering from her hip break and surgery. I can't wait to see her and give her a hug!

Looking back.

Yesterday, we met my friend Kris and her two cute kids at our local children's museum. Though the location has changed, it is the same museum that we had a membership to when Morgann was a wee two year old. We haven't gone in about three years. Morgann and her new friends had a fun time, but I couldn't help but feel a bit wistful about how fast she has grown up. She is no longer toddling through exhibits needing my help. Now I had to try hard to figure out where she was while playing. She has turned into such a wonderful young lady. She happily helps me with the boys during the day, is polite, friendly, and special little girl.

But seriously, can we shrink her? This growing up thing has happened all too fast. Where did that little toddler playing the drums go?

Gavin Owens: {Special Needs iPad 101}

This is pretty cool. IPads and special need kids. I want to start saving to get the boys one!!

Gavin Owens: {Special Needs iPad 101}

I heart snow

I love snow.

It's white

It's fluffy

It's pretty

It's cold

It's peaceful.

I love snow.

And today we got

SNOW

20 inches of beautiful white fluffiness.

...but also.....please keep my mom in your prayers..she broke her hip today at work. She is awaiting surgery right now. I fear the recovery will be very hard. But God is good in good times and hard times. I wish we could just drive on down to VA....but there is 20 inches of white stuff...so maybe God wants me here right now. Love you momma.

I am so happy that my little Morgann is much like her momma.

And loves it like me:)