Life

Life has gotten away from me.  With the start of the 2011-2012 school year, I find myself swamped with life...grading papers, lesson planning, doctor's appointments, PT appointments, and as many people have found after the hurricane and all the rain we've had, scheduling more appointments for roof repairs, mold removal...life has gotten away from me.

You know, all I want to do is cuddle Jackson and play with him, work on sitting up, using a sippy cup, picking up food, and holding his own bottle.  All the other stuff has to get done as we all know...but as many people find, there's just not enough hours in the day.  So I apologize, but blogging has gone down further on the list (along with house cleaning...please don't stop by randomly) while all those other life necessities are closer to the top of the list...right below all things pertaining to Jackson.

Time for Gamecock football!!!

Somewhere in this time Jackson turned 9 months.  Of course at this point, we're closer to 10 months than 9 months...  Anyways, Jackson had his 9 month well-baby appointment and he's doing well.  He has been put on reflux medicine that may help with the spitting up (it hasn't), but otherwise is doing great.  He weighed in at 20lbs. 5 ounces, and is 28 1/4" (both in the 50th percentile on the typically developing growth chart).  His head is still in the 5th percentile, but has maintained consistent growth.  He's still in his helmet, although we've had the occasional time out of the helmet due to some blistering from the adhesive of a band-aid.  We go back on Friday, the 7th for a scan to see the progress that he's made.

At 9 months, he loves playing with his feet and has become very uncooperative during photo sessions...and getting dressed after bath.  We are very anxious for him to sit independently because bath time is becoming more and more of a challenge.  He loves to eat still and we've been trying to expose him to different foods and textures.  And as of yesterday, his first top tooth is coming in...baby tooth number 3!    

A few weeks ago we attended our first Buddy Walk.  Adam's company, Edge Bio, does a charity event every year and because of Jackson wanted to do something in support of individual's with Down Syndrome.  So on a cool and rainy morning, we trekked out to Frederick and walked for Jackson.  Edge Bio was recognized as being a top donator for the Buddy Walk!  We are so grateful for the support that Adam's company has given us.

Fascinated by the hanging branches

A week after the Buddy Walk, we participated in walk/run for Kennedy Krieger's Down Syndrome Clinic and local support groups.  Our team, Jogging for Jackson, was the top contributor with a total of $4000 as of yesterday.  We had 29 participants and had three of our participants win awards!  Meg got third in her age group, Jeremy got first in his age group, and Ryane got an award for youngest participant! 

Hey Pop...can I have your hat?

Jackson with the CCI dogs that joined us!

Grandpa and cousin Evan

Walkers

Don't worry Jeremy, we won't tell anyone that you got beat by this girl and got fourth place overall.

First place for age group!

Jogging for Me!

Our youngest participant...5 weeks old!

I think that catches us up...I am going to try to switch another load of laundry and do the dishes before Jackson gets up from his morning nap...there it is again...life.  I'll try not to let it get away from me this time.  Hope to see you guys again soon!

The update post...

Ok...so I've been slacking off big time on posting.  And taking pictures of the little munchkin...most of the pictures were taken with my iphone, so the quality isn't necessary that great...but here's a little recap of the last few weeks. 

Learning by eating the cards

Sleeping leg up (like the spit-up spot to the right?)

Knees tucked under

Jackson received his helmet on August 11th.  He transitioned into wearing it full time, but we had some major concerns with it shifting on his head and scrunching up his ear while covering the other one.  We had it adjusted two more times until the company decided to make him a new one.  The helmet was shifting too much and we would constantly have to adjust it otherwise.  So Jackson was without a helmet for about a week and receive his new one on the 25th.  It fits significantly better and is not shifting at all.  We were a little more aggressive with the transitioning since he was fully transitioned the first time and ended up in the helmet 23 hours yesterday with no problems...until this morning of course, where I got him up for the day and he looked like Will Smith in the movie Hitch.  His poor eyes were swollen, the right halfway shut...So I popped the helmet off to see if it had to do with the helmet and within the hour the swelling started going down and I placed a call to Star Cranial.  Because Jackson slept on his stomach most of the night, the helmet put pressure on his forehead and caused his eyes to swell.  They may adjust it, but she said that if he only is in the helmet 21 hours instead of 23 hours to allow the swelling to go down then that's fine.  Jackson usually doesn't sleep all night on his belly, so I'm hoping that we won't have to worry about this too often.  And for those of you wondering if Jackson was in any discomfort....when I rolled him onto his back to get him up, he looked up at me with swollen eyes and gave me a big gummy grin. 

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Hurricane Irene came and went this weekend.  The worst of it hit us in the middle of the night, but left us with a couple of leaks (we already had one spot that leaked) and water spots on the ceiling in the nursery.  We lucked out with the power...we had it the entire storm and feel we got off pretty easy compared to some other areas.  I told Jackson that he's not even a year old and he experienced an earthquake and a hurricane all in the same week! 

Hurricane Irene?  You mean, Hurricane Jackson!

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On Sept. 25th, I am participating in a run/walk for Kennedy Krieger where the proceeds will go towards their down syndrome clinic and other local groups.  I'm beyond thankful for those of you who have donated to this run and/or are planning on joining us for the event.  We started out with a goal of $1000 but are over $2500 and have over 19 participants on our team, Jogging for Jackson (a couple didn't actually register with us, but will be unofficially on our team).  If you'd like to participate or donate, please check out the link: http://supportus.kennedykrieger.org/site/TR/Events/General?px=1052539&pg=personal&fr_id=1050

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I'm officially back at work, although got an unexpected day off today due to the hurricane.  Jackson and I both had to adjust to a new routine and I miss him during the day of course.  I'm assuming I will be back at work tomorrow, so I'm going to try to be productive today and enjoy some time with my sweet boy. 

Happy, dry, Monday!

Back to Reality

Coming back from a vacation, whether short or long, always requires a bit of an adjustment period.  This time around, it seems a little bit harder...and perhaps its because we have a little one who required some adjusting as well and/or perhaps it has to do with the looming school year ahead.  All I know is that I still have a load of beach towels in the dryer that has yet to be folded. 

Jackson decided that upon his return from the beach, he would get up at 5am.  Now normally we usually get up somewhere between 6 and 7...so basically what I'm trying to say is that the sun should be on his way up.  It took Jackson about 5 days to get back to his normal wakeup and unfortunately during this time, I was having a hard time sleeping.  Not very fair, huh?  It always feels so good to come home and get in your own bed, so I have no idea what has caused this period of tossing and turning. 

Jackson also decided that napping in his cribs is for sissies.  After two weeks of sleeping on the beach or in someone's arms, it was once again, an adjustment back to the crib.  He's never been the best napper, but we're back on track to get in at least one decent nap in his crib. 

That's not your crib.

On the first Tuesday we were back, we headed over to Star Cranial in Columbia to get Jackson's head scanned and have pictures taken.  Normal asymmetry is somewhere between 0-6mm.  Jackson's is 22mm.  So we ordered a helmet and waited for its arrival.

In the meantime, Jackson has gotten much more aware of the cats.  He generally tries to grab the cats fur and yank the cat around...but he also seems to be greatly fascinated by the tail.  Surprisingly, Neko (big, fat, mean cat) has been very tolerant of Jackson...even when he managed to roll halfway on top of her, all she did was give him a little sniff.  And if you've ever met this cat, you'd be amazed that we didn't have to bring out the bandages and Neosporin. 

Jackson and Coleslaw

Mmm, cat hair.

Let me grab your face

So that brings us to today...where I'm very sleepy as I did not sleep well last night (woke up every 1/2 hour or so)...but today Jackson is 8 months old!  And for his 8 month birthday, we got him a very expensive helmet.  We have been spending the day getting used to the helmet and I am at this very moment enjoying naptime (he doesn't have to wear it during naps on the first or second days).  By the time I posted this naptime came and went...post not done...The biggest issue seems to be getting it on his head, but once its on, he does...okay.  Distraction seems to be key...and wine...to end my day with. 

But on a brighter note...he's 8 months old!  He's doing really well sitting up, with help of course...and it seems like his PT has taken a turn from working on rolling over to working on sitting up from a laying down position. 

The day after we returned from the beach we were sitting on the couch playing with Jackson and he was making his "cough-laugh" noise.  Adam said, "I guess that's gonna be his laugh."  And literally within a few minutes Jackson laughed...actually laughed...a real giggle...it was the best sound ever!  We got him going for a good 10 minutes or so.  Haven't heard it since...but I know its in there...just waiting to erupt. 

Happy Thursday...

Duck, Duck, Post

There's something about driving over that final bridge over to the barrier islands...that final stretch carrying the salty breeze with the excitement of time away from your busy schedule.  We were so lucky to be spending the next two weeks with our family, first with mine, then with Adam's.  And of course, we were looking forward to Jackson's vacation firsts. 

Why hello there, blue eyes!

Beach vacation always brings back fond memories of our days in Long Beach Island, NJ.  Of long days in the sun and sand.  Or how my mom would have to drag me from the water because my lips were purple and wouldn't let me back in until they were a normal color.  Or how on the first night, the men would take us to the beach while dinner was being prepared (and probably to burn off some energy from being stuck in the car for a few hours) and we would jump waves and pretend to fall down.  We'd leave the beach completely soaked in our clothing and thinking it was the greatest feeling in the world.  Or of our inevitable trip to the ice cream shoppe (most likely Honey Bubbles) and how at the end of the week we would walk down to the water with our leftover stale bread in hand to feed to the seagulls.

So of course these traditions should be passed on to our children and thinking that Evan would find this pretty entertaining, we walked on over to the beach to look for birds...

Any birds...

Maybe...

So apparently all the seagulls are either in L.B.I or in Ocean City, Md. because even the one or two that flew by were not interested in the tasty doughnuts we brought them.  Jackson was bored to sleep...

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And of course what is more magical than seeing dolphins swimming by? 

These were so close to shore and instead of just swimming by, they were circling a big school of fish to feed off of.

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Mommy and Daddy's Evening Away

Jackson learned to splash in the pool.  (I have about 30 more photos of him just splashing away)

Jackson and Evan had a few moments of bonding time.  Although it'll be a little more exciting for Evan once Jackson can sit up and play a little. 

"Well if Jackson is going to lay on the blanket, then so am I"

We also convinced ourselves it would be a great idea to walk and get ice cream with the boys before bedtime...in the heat...and humidity...the boys in their umbrella strollers and the sweat dripping down our backs.  Ah, traditions...  

And just try to get two young children to take a picture...

When the second week arrived, we literally had to cross the street to move ourselves from the condo to our house we'd be staying in for the second week.  It was so easy.  We had an overlap of one day of the Chwan's week with the Bennett's week so we merged our families for the evening munching on crabs and sharing stories from the week before. 

 

Hey there, Grandpa.

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.