Welcome to our journey!

If you are new to our blog, you may want to start with Beginnings - Part 1 and Part 2 to catch you up to speed on Jackson's arrival on December 11th, 2010 (yup, 12/11/10).

Thursday, July 14, 2011

7 month man!

July 11th, 2011:

You turned 7 months.  You are successfully rolling back and forth (although sometimes not as gracefully as necessary, but you get the job done!).  You can sit up in a tripod for a very brief period of time before you decide to fling yourself backwards much to my horror.  You smile with your whole being and reach out to things that are interesting to you.  You're growing up quick.

Today I made it a point to get my blood drawn (routine blood work) that I have been putting off for over a month now.  We provided our paperwork and sat ourselves down in the waiting room.  Your cheeks were rosy and flushed and your eyes asked me to pick you up.  You were sweaty from the heat of the summer and flashed me a grateful smile when I plunked you on my lap.

A woman came in and sat down next to us and commented on your beautiful eyes.  Then she said, "He has down syndrome, right?"  I was a little off-guard as this was the first time a stranger has commented directly on your down syndrome.  I frequently get comments on how cute you are or how beautiful your eyes are (which are all true statements), but this was the first.  She told me about this family she knows where the oldest child has down syndrome (one of three children) and he is 60 years old.  She told me not to believe everything I read and that you have an amazing life ahead of you.  I didn't tell her I already knew this...but it was nice of her to think so too.

Helmet update:  It looks like the helmet is a go...I took Jackson to Johns Hopkins neurosurgery department and they gave me a prescription for a cranial scan and cranial remolding orthoses (aka - helmet).  We will head to a place in Columbia at the beginning of August to start this process.  He will have to wear the helmet 23 hours a day for around 3 months.  We will probably have to go weekly to have the helmet adjusted, but in the end his head should be much more rounded!  We are keeping our fingers crossed that we get it covered by insurance, but I'm not trying to get my hopes up too high since it is strictly a cosmetic thing.

Heart update:  Went back to Johns Hopkins the next day to the pediatric cardiology department where Jackson had an electrocardiogram and then ultrasound of his heart.  The hole (ASD) is still present (actually there are two holes next to each other), but it has not gotten any bigger and the right side of his heart is not enlarged which means that the right side is not overcompensating at this point.  Dr. Walker mentioned that he has, I believe she called it, pulmonary valve stenosis...in his case he has a mild "blockage" most likely due to the extra blood across the hole (imagine more blood flowing through a narrow vessel).  But all in all, he is in great shape and there is no needed intervention at this time.  We are going to go back in 6 months for monitoring and if there is no change or if the hole is smaller then we will probably monitor every year instead of every 6 months.

Wednesday, July 6, 2011

Summer Adventures

We kicked off the summer with a trip down south to celebrate my mother's birthday.  My sister and I packed massive amounts of children's things into her car, strapped the boys in, and headed down 95 to help out with the preparations.  Jackson pulled on his car seat toy while Evan threw his stuffed dog towards the front of the car and I would throw it back to his delight (a habit that I'm sure I should not be indulging).  All this to the sounds of childrens' songs about dusting and bath time bubbles.  We hoped the boys would sleep, but just as soon as one would settle, the other would start up.  But we made it there in time for a late night bottle and nighty night time.

That Friday we spent the morning prepping food (thank Goodness for morning naptime)...and with the help of my Aunt Holli, Joanne, mom, and sister we knocked out the food preps real quick and were able to squeeze in some playtime.

And beach time...

And sleepy time...

Daddy arrived just in time for the festivities and a couple hours of snuggle time before Jackson's fussing reminded us it was nearing bedtime.

Birthday celebrations....
Family gift to Mom - Cookbook with family and friend recipes


Jackson's been working hard.  At my parent's house he was utilizing his unusual method of turning over from tummy to back.

So we continued to work on him getting those arms up and progress!!!

For the 4th of July holiday weekend we decided to have ourselves a little "stay-cation" by packing up and heading down to Severna Park.  Jackson got to experience his first boat ride ever.  Did he like it?

Well, like many things he tolerated it.  It was like Ralphie's brother in a Christmas Story when he was so bundled up that he could barely move.  Jackson was all propped up and fell asleep in that exact position.  Such a trooper...

On Sunday, we plopped ourselves on the beach with friends and family and hung out for the afternoon.  Jackson had his first dip in the Severn River with Daddy.

Then we got cleaned up and headed back down to the beach to have dinner and watch the fireworks.

We had a brief interuption in our festivities with a storm that rolled on through.  Jackson was sleeping in his peapod, but I scooped him up and got him under the pavillion just in time for the heaven's to spill.  He stayed asleep initially...and as I looked around at all the young children crying and clinging to their parents, I was amazed at how Jackson was handling it all.  And then...one clap of thunder too many, and the wailing began.  If you like storms, this had it all...downpoor, thunder, and lightning that literally went horizontal across the sky. 

Jackson got himself back together and we watched the fireworks by the river (or Jackson slept while I held him while watching the fireworks by the river). 

On Monday, we got our things together and walked over to Matt and D's house to watch the Severna Park parade.  Once again, little man slept through about half the parade, but did wake up in time to see some old cars and floats. 

Hope everyone's summer has been filled with adventure...

More to come...