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.

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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.

3 comments:

  1. You are such a great mom! Jackson is such a happy boy!

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  2. This blog made me cry at 8am this morning. Your little guy ( also our little guy) IS growing up so beautifully and FAST! We love him, and you both, and are overwhelmed to be apart of Jackson's life!!!! Beautiful blog Becky!

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  3. Julian had to have a helmet too! It ended up bothering us way more than it bothered Julian which is a good thing (we just wanted to cuddle him without the helmet! But Julian was just like, "whatever mom and dad! I'm having fun!). He had it for about 3-4 months from when he was 7 months to about 11 months. Sounds like the exact path Jackson will be taking.

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