Friday, January 28

4 year check up for the dynamic duo

Earlier this week we met our new pediatrician and she is just as great as we heard.  Tommy and Liam really enjoyed her 'mom' type style and comforting comments.  She kept the check up fun while very informative and covered all the bases. 

The boys had five immunizations (four plus the seasonal flu vaccine).  Liam was so sweet and announced to be after each painful injection "I did it mommy!"..... "I did that one too!".  I cried, he didn't!  But poor Tommy needed to be held by three people and it just was horrific.  He got lots of praises and hugs afterward and was nothing but smiles. 

We are going to start a multivitamin chewable does anyone have recommendations?

We received the orders to have the xray of Tommy's neck area done to see if he has "atlantoaxial subluxation or dislocation"  which means the distance on X-ray between the atlas (1st vertebra) and odontoid process (2nd vertebra) is more than 4.5 millimeters (mm).  Sometimes this happens specific to Down syndrome.  And then there would need to be restrictions on sports, horseback riding, trampoline, etc.  Since the immunizations were painful, we made the decision to come back and due the xray later.

Sleep training Tommy for the past four years has been exhausting.  For him.  For me and Colin.  For his roommate twin brother Liam.  And for our family.  Tommy doesn't sleep thru the night.  He is a gypsy of epic proportion.  One night I woke to find him watching western movies in our living room and about two dozen yogurts were strewn around in half eaten portions and Tommy looked like a teenager sprawled on the couch.  So, I begged for melatonin.  I remember some friends mentioned they use it with some success.  It's a naturally occuring compound.  In humans, melatonin is produced by the pineal gland, a gland about the size of a pea, located in the center of the brain but outside the blood-brain barrier. The melatonin signal forms part of the system that regulates the sleep-wake cycle by chemically causing drowsiness and lowering the body temperature.  We have hopes that this prescription will be helpful for Tommy to regulate his sleep schedule.

And last, Tommy received a blood draw order for a complete Thyroid panel to double check if he has hypothyroidism.  Probably next week, I'll get enough courage to take him in for a blood draw.  It's an important test and I don't want to put it off, I just want to give him enough of a break between these tests to be human and a little kid again and relax!

Liam weighed in at 43 pounds and measured 42 inches tall, 90th percentile for both weigth and height which is nicely proportioned if I do so so, just a tall tank!  Tommy is a whopping 39 inches tall and 37 pounds.  Which actually places him in the lower 25% on a typical growth chart. 

Two little boys counting their immunization stickers. 

Tuesday, January 25

Got it!

I think I have figured out the concept of  "pages" in blogger.... now I've got the medical and farm girl pages and I'm guessing I will be the only one in the future to look at those... but both will be helpful to me :)  Thanks all for helping!

Medical stuff

I've seen some blogs recently that have had tabs across the top and one has "medical information" and is password protected just for family to access..... how do I make one of these?  We are in the process, not by our choice, of switching pediatricians.  Tomorrow is our first appointment (the duo's 4 year check up) with our new doctor.  While we are between doc's we have had two visits for Tommy with other dr's to "get us by" until our new doc is established.... and both visits Tommy needed antibiotics.... and both visits his patient chart (extremely thick, volume three) is MIA.... and of course both doc's asked me which antibiotics he has been on before... grrrr.  So, I want a tab on this blog, which I can access from my little ol' droid smartphone and be able to keep a parallel chart there for Mr T.  Yelp?  Anyone?  How do you create tabs within your blog?

Other updates from the homefront.... Colin's knee isn't mending very well so he is starting four weeks of physical therapy.  Our new babysitter dislocated her elbow snowboarding over the weekend so we hired our lovely young neighbor girl to be the "arms" while our other sitter can over oversee the "how" things are done.  The duo is loving having daddy here recovery, their usual afternoon sitter PLUS our sweet neighbor girl.... all while momma is at work.  Somehow, someway, this is working just fine for us. 

Tonight, I'm joining my neighbors for a girls night of ordering our garden seeds and sharing experiences, tips, what not to plant... what we can share... and wine.  I have been looking forward to this evening and sharing gardening ideas.  I'll post some tips later.

Off to put these boys on the school bus..... have a great day!

Monday, January 17

Potty training, full speed ahead

I ramped up our potty training efforts and made small progress today.  Lots more practice which is good.  I moved our diapers, wipes and ointments into the bathroom.  No more diaper changing table.   All things poop and pee happen in the bathroom now.  We watched Elmo's Potty video a few times today, they loved it.  And I resorted to BRIBES.  I packed up the duo and we went to the dollar store and picked out some of their favorite little plasticy toys and told them they could select one each successful potty episode.  This was a HUGE motivator for Liam.  And whatever Liam does, Tommy is really interested in, so the bribes worked well.  We had a few accidents, mainly with poo, but we made small progress today and lots more practice.  I didn't scold them for their accidents, just reminded them the potty was there and even took their accident over to the potty to show them how it should go there.

Our potty practice was interuptted today when we had to take daddy to the dr, because in his knee surgery recovery his incision looks infected.  Poor daddy.  He got an antibiotic and the duo was really good at the orthopedic surgeon's office.  This was important because I have calculated the mean age of the clients there at 80 yrs old.  We didn't want to bump into anyone with our 'boy rampunctious energy' and knock them over by accident.  Daddy is resting again and his pain is a tad bit better.

Wednesday, January 12

A few smiles for the week

My dad has done GREAT after having double bypass and an aeorta valve replacement in his heart.  Day three and he has taken steps and has most of his wires and tubes out.  He is eating and most importantly teasing everyone!  Oh, by the way, he is 87.  And I love him so much.  He always makes me smile.

Tommy is on oral steroids for a recurrent sinus infection that has caused a bit of a rattle in his airways, a different antibiotic (because the last one was within 6 weeks, poor Hirschsprung's is not going to enjoy another antibiotic this quickly), and nebulizers of albuterol and pulmicort twice a day.  Being a mom of a child with special needs is a humble job, I made a mistake on his nebulizers when we were switched to generics and I now know to ask more questions, or learn greek ;).  Not harmful for Tommy, but not as helpful as they could have been during the week I made the mistake.  The pediatrician that we saw last night, not our normal one, suggested we revisit our immunology and pulmonary care teams and get a stronger stick soon.   Perhaps something like Singulair might be added to Tommy's daily defense meds.  We saw Dr Gass and I don't mind posting here his name, although I don't do this very often, but I fairly sure he is older than my dad and the bond that has developed between Tommy and this dr is remarkable for their infrequent visits.  There is something about that dr that cares so deeply about my son.  He reminded me, Tom-Tom's lungs are more special than Down syndrome....  they are for some reason still very fragile, a simple cold turned sinus infection can cause him to crash quickly.... and the oral steroids have worked so perfectly with clearing up his lungs.  Tommy is grinning ear to ear today, back to his happy self.

Eight legs and two wiggly tails gives you an idea of our two six year old boxer girly dogs.  Usually, they are active and happy but now have arthritis which acted up with the cold weather.  Enough to cause my husband to make a vet visit and me, 80 miles away with my dad, to have a very over active imagination about what may have happened to them.  They are back to their happy selves after steroid injections and a supply of arthritis meds.  Their smiles are their tails wagging!

All six of us are enjoying a birthday dinner for Colin tonight, lots of smiles will be had.  Hope your week has been filled with a few smiles. 

Sunday, January 9

Organization, safety...... and fun

I finally got the bug to get organized. 
Well, I'm still not. 
But at least I've gotten a few steps in the right direction. 
 And would LOVE anyone's ideas on how they keep organized. 

Here is the view from our front door/hallway toward the kitchen and our dining room/homework area is to the right.  Each of our four kids has a drawer (this has happened for a few years now) and keeps their school related items there.  On the shelves of this open cabinet are board games, card games and learning toys for the smaller crowd.  The drawers at the very bottom have stacked board books, some soft cover books and at the very bottom two drawers are Tommy's most favorite "lights" and "strings" and "gears" to play with. 
I keep the dynamic duo's favorite items on the bottom so they can self pace their play.  But the items that need my help are 'special request' and stored out of reach to prevent frustrations.  Tommy and Liam's coats and backpacks are hung from the side of this cabinet which keeps stuff up off the floor and clean.

The gate between the kitchen and dining room is convenient when we are watching a movie in the living room and I want Tommy to stay a bit closer to me for safety.  But it's hard when I do laundry for six of us and have to hop over the gate and still make sure my little "runner" is where he needs to be and not escaping.  The gate below is new and it's at the base of the staircase to prevent him from getting upstairs and into things.  Both gates seem to be good "physical boundaries" that he respects.  Hopefully soon he will just hear the words "no stairs" and be able to follow that direction, but for now, the gates are needed. 

We have also had hinges at the top of some of our key outside doors and pantry because Tommy will randomly leave the house or rummage thru the pantry.  The handles of most of our doors have safety knobs to prevent him from leaving also.  Of course our acreage is fenced, but none the less I have seen his little half clothed body running to the pasture more than once so I'm trying to keep his little gypsy self inside the house with physical restrictions until his "following directions" improves and he can understand that we stay inside (until we have at least clothes on). 

All of our safety stuff is more for my peace of mind in keeping Tommy and Liam safe.  Liam can follow directions fairly well now, but Tommy still has a wandering foot and needs some of the physical boundaries to keep him safe.  I would love ideas for a little gps unit that we could use on Tommy while camping because we still haven't convinced him that our campsite is where he stays and boy can this little guy run.  Of course nothing ever replaces my watchful eye, but the gps would help just in case he slipped out of my sight while camping. 

Another step toward organization was my van.  We finally purchased two taller car seats.  These were a fraction of the costs from ToysRUs, recommended by my friend, at Costco they were $85.  Alpha Omega Elites.  We wrote each of the boys' name on the red adjustable head rests at the top so we knew whose was adjusted for whom. 

And in action, they are terrific!  I loved saving the money, having something safe and comfy for the boys.  Car seats that are easy for me to use and keep their heads from 'flopping' over when they sleep.  When we traveled to our cousin's Andrew party, one captain chair was folded so Nate could use the top for his laptop.  Hannah is in the passenger seat gabbing at me the whole way :)

My sister Tami, her hubby Jason and their now 5 year old son Andrew.  My sista is very pregnant and due in April with her second boy!  We had a blast at their "Tom and Jerry" themed party, so fun.

 Hannah did face painting of cats on the kids (Liam, Andrew, cousin Maddy)

Here is a blurry picture of all five of us, yes I was painted up to for the fun!

Liam LOVED the fun at the party.

 Grandma and cousin Andrew got a snuggle.  My dad is having open heart surgery on Monday so he made the wise decision to stay out of the germs.  We missed him though.

Random picture from our children's church.  I'm making a new 2011 resolution to volunteer once a month in children's church.  I haven't shared that with anyone else, just because I'm worried Tommy will get sick and I can't serve, but I'm trying and for the last few months we have REALLY enjoyed it.

Monday, January 3

Merry Christmas and Happy New Year

With love from your blog authors Sandi (aka Tommy's mommy) and Tommy!

And from all six of us!  Hannah-16, me (42 yrs young), Tommy-4, Colin (turning 49 this month), Liam-4 and Nate-15 at my sister Deb's house.

Tommy Adventures