Splatter, Scooching, and a Pony

Look at this handsome, smiley face!  :D

Our kitchen is a MESS!  Which is one of the main reasons I have not been able to post as frequently.  I couldn't be happier that we switched to a blended diet, but our kitchen has never looked worse.  Specifically the cabinets and ceiling.  Take a look below for some examples.

This is our ceiling.  Oops, didn't know this one was there.  The syringe exploded while I was talking to my friend, Janie, on the phone on Sunday.  I thought it got in my hair but upon examination of my head there was no green goo.  I couldn't figure out why there wasn't more on the floor...

This is the worst explosion yet.  It went all over our cabinets and ceiling due to a faulty syringe (even with olive oil on the stopper they just don't work so well after the 6th feed or so).  You can see the main splatter on the cabinet, but the worst part is the small splatters all over the cabinet and ceiling.  I thought it would be an easy clean, but I found a large splatter inside the cabinet (it somehow made it through the small crack, tells you how much force was behind the splat) and then realized that it is near impossible to clean the goo from between the bumps on the antiquey, white ceiling.  So, a day later, some of the splatter is still there.

Moving along...James is getting into the movement game!  He is perfecting the crawling position, but still struggling with arm strength and balance.  Enter...overalls!  Ok, I wouldn't normally do this with my child, but he was wearing overalls and trying to balance on all fours so I gave him a little help.  Check out how good he is getting.  We are encouraging his crawl as much as possible as, when we work on propped sitting (which he can now do on his own for about 15 seconds) he tries to scooch on his bum.  This is NOT allowed as crawling provides key skills and strength that James' body needs.  We haven't gotten a picture of his crawling or propped sitting yet as they are very new skills that we are trying to encourage.  And, as they only last for a few seconds, there is no time to encourage and grab the camera (except when we are both around).  We will work on getting pictures of these exciting milestones, but, for now, check out the video of his "Overall Crawling."

Last but not least, we were finally able to inflate the Rody horse James got from his grandparents for his 1st birthday.  It is insanely awesome.  James' PT recommended it as it provides stimulation for his muscles (low muscle tone usually means his nerves are less sensitive and need more stimulation) which will help in overall development and, especially, with "waking" his body up to eat.  It also helps with core strength, balance (we move him side to side and he corrects to midline), and proper sitting (we can face him backwards, prop his hands on the horse, and the horse's head keeps James' head from flailing back which is a bad tendency of his).  It will be a great help to strengthen James' muscles and vamp up his crawling.  Check out his first Rody ride:

Thanks for being patient with the delays, it has been a busy couple of weeks!

With love.

Blender Marathons

Somedays I spend more time with the Vitamix than with my baby and husband.  I don't like those days, the dreaded "food marathon" days.  We are still working out our routine for what food is fed on which days so things have been a little crazy.  It has also been hard to solidify our "food marathon" schedule.  The original plan was to make a week's worth of food at the beginning of the week.  But, I usually go to Whole Foods toward the end of the week and want to blend everything while it is still fresh and I can guarantee that it won't go bad.  So, Thursday or Friday usually end up being "the" day.  Or both, as in this week.  I should count the hours I spend preparing and blending his feeds so I can better plan it into the week (and on a day when Mark is home and can help), but I haven't gotten that advanced yet.

As we increase James' feeds things are getting a bit more complicated, although I think I finally have a pattern going.  I had to make sure with his two different menus (we rotate every other day) that he was getting protein, starch, vegetables, and fruit each day, as well as the same amount of calories.  The half feed (James has 2 full blended feeds and one half while the rest of his calories are from one and a half feeds of breastmilk) threw me for a loop as I had to make sure that, when we double it, in the long run, it will also work (I forgot I could only use .5 tsp olive oil in a half feed - bummer!).  I think we finally have a new working menu (leaving out the "fillers" and "liquids"):

Day 1	572.5	calories
	Prune	Banana
	Quinoa	Carrot	Avocado
	Lamb	Cauliflower
Day 2	570	calories
	Peaches	Oatmeal
	Carrot	Sweet Potato
	Chicken	Green Bean

The original goal caloric intake was 550 calories, but now I have bumped it to 570.  He is gaining weight well, but it wouldn't hurt him to increase his weight gain a bit.  It is much easier to get higher caloric content in James now as we increase the blended feeds.

It has been an exhausting day.  I made his peaches and oatmeal, chicken and green bean, and (a bonus, in case we run out of anything) avocado and oatmeal meals today.  The freezer is looking better stocked, although it is a little out of control.

As 9 o'clock approached and I was still measuring and blending I got a bit discouraged.  But, God knew I would need an extra boost tonight.  Today in Whole Foods, as I exasperatedly searched for organic prunes which were nowhere to be found (substitute in plums!), a little boy walked up to James and said "Hi, baby!"  I didn't pay too much attention as he walked away and I was still searching for those elusive prunes, but he came back and said "Hi, baby!" again.  This time I started talking to him.  He looked like he was 6 and he was a very friendly little boy.  I wasn't sure at first, but I realized he had Downs Syndrome.  He said hi to both of us, took my grocery list and showed his mother.  Then he came back and gave me a big hug and didn't let go.  It was one of those "everything is going to be alright, Teresa" moments.  God knew that, as I was pulling my hair out trying to get the chunks out of that chicken mixture, the memory of that hug would stay with me and keep me going.  James is going to grow, be healthy, and learn to eat on his own and the time I take to mix these good meals for him will help him to be that normal kid, walking through the grocery store, saying "hi" to strangers, making someone's day.  He already has a big impact on strangers who smile at his happy expressions or stop to talk with him, I can't imagine what a heartbreaker he will be.

I didn't tell his mother that my baby has Downs Syndrome as well.  It was one of those "what do I do?" moments.  I wanted to treat that little boy as I would any other little boy that came up to me in the grocery store.  And I am at peace with my decision to not comment on the Downs, even though my comment would have been positive and relational.  I didn't see a little boy with Downs Syndrome, I saw a little boy that made my day.

Right Before the Earthquake

Tomorrow is the anniversary of Virginia's earthquake which means today is the day we brought our son home one year ago!  I can remember how excited we were to drive up to our building, FINALLY with our baby in the backseat after a four-week NICU stay.  The next two weeks, although exhausting with round-the-clock gravity bolus naso-gastric feeds (feeding every three hours by holding a syringe attached to his nose-stomach tube, pouring milk into the syringe which entered via gravity) were fabulous!  Instead of driving 30 min + to see our son, we could hold him whenever we wanted!  He was able to leave his small NICU bassinet behind and explore the fun things we had for him (like Daddy's fabulous black and white drawings that kept James enthralled for hours).

Before James' first birthday Mark and I looked through the early pictures of James.  We had a hard time viewing the ones from these first two weeks of his home life as we forgot how terrible his breathing was, how pale he looked.  These pictures brought back difficult memories.  We couldn't believe we were talking to James as if everything was fine, we forgot that was our "normal" (Although, it was and it wasn't.  Some of the breathing issues were normal, but he soon developed an infection that sent him back to the hospital. We spent the second week of his home stay trying to figure out what was wrong until, finally, his pediatrician realized something wasn't right and sent us back to the hospital).

We are so happy to have those times behind us.  I love realizing how far we have come as I listen to Mark and James chat and James burst into his cute chuckle.  Check out the difference between our boy last year and this year:

Attacking his pictures.

One of his favorite funny faces!

Great pic from today.  His hair looks cute like Uncle John's.

With love.

Attention Withdrawl

James loves being the center of attention.  And a five day beach vacation with my family equals plenty of attention for our little man.

Unfortunately, after times like these, James wants attention all the time and he has to go through a few days of withdrawal before he is back to his normal, chill self.  We know this is the case when James whines and cries, we walk over to check on him and he breaks into smiles and claps.  Then, as soon as we walk away he cries again.  It makes for a fun few days.  But, it makes me happy to have problems like these.  James is a normal little kid!

James had some quality time with his uncle while on vacation.  Their favorite activity?  Watching the Nationals WIN!

James loves watching the games.  We hope to take him to see one live!

More teeth are coming in!  

More soon.

With love.

Fangs

James officially has a tooth!  To be honest, I didn't know it was there until he was laying on the doctor's table today, chewing my fingers while I talked and my nail was pierced by something.  I couldn't figure out what happened, there couldn't be a tooth back there, only his little front tooth is trying to poke through!  But, when I had a chance to check, I found a FANG growing toward the back of his gums.  I couldn't believe it.  It seriously looks like a fang.

We had heard early on (like day 3 of James' life as I poured over the Babies with Down Syndrome A New Parent's Guide book) that James would, most likely, get teeth later than normal and that they may appear in random order.  We were prepared for this, but I wasn't prepared for the surprise of being pierced this early on by what appears to be a canine or molar.  I just wonder how long it has been there!

I couldn't get a great picture, but check it out:

His "fang."

The fang doesn't bother him!

We just got our Vitamix!!!!!  More on that later.

With love.

Beach Boy

It is wonderful to see life "normalling out" for our one-year-old.  He has done many firsts: first swim, first plane ride, first tooth (not quite in yet, will let you know), first solids, and now his first trip to the beach!  We increasingly understand the importance of a normal life no matter the limitations of James' feeding tube.  We just have to find creative ways to make the challenges work.

It is a challenge traveling with any child, but we had head-scratching moments when it came to caring for James' differences on the beach.  Since he can't sit it looked like playing in the sand and water was out.  We were also worried about finding a suitable way to feed him on the beach without getting sand in everything.  Unfortunately, there wasn't much of a solution when it came to sitting.  I did let him lay on his stomach on the edge of a large blanket and put his hands in the sand.  That didn't last long as his eyes and mouth were much too close to the grainy substance.  We tried carrying him into the ocean, but the water was surprising cold for an East Coast beach in August so he wasn't too fond of that.  We did find that he enjoyed laying with me on the blanket, watching the waves and listening to everything that was going on.  I guess he is a true beach bum.  And, when it came to feeding, draw-string sport bags came to the rescue!  It was easy to pack and carry all his feeding supplies (machine, syringes, oral food) and the material kept the sand and water out.  And, when it came time to hook him up to the pump, we could keep the machine in the bag and just run the tubing out the top.  We did have to bring his car seat down to keep him in place while he ate, but it worked great for his mid-meal nap!

By the third day we ditched his bathing suit all together.  He received cute trunks from his Aunt Nancy and we bought a rash guard to cover his tube, but James still can't do the shirt-pants combo without scratching or pulling on his tube and we couldn't risk the sand getting in!  We ended up just using a one-piece tank outfit.  Luckily, sand isn't much of an issue in the clean pool so he will get good use out of his cute bathing outfit!

Even with these questions it almost felt easier to travel with James for five days than it did for an afternoon out, reason being we were taking suitcases and could just pile multiples of everything we thought we might possibly, remotely, probably not need into the back of the car (including that nebulizer that, luckily, hasn't made an appearance since March).  And I had Mark to help me.  And we made lists, lots of lists, and checked them twice, more like ten times.

We are very lucky that James loves the car, it made for an easy ride.  He loves the windows rolled down (I wonder where he got that from?) and his new favorite thing is to throw his hands in the air like he is on a roller-coaster.  I'll post a video of this when I finish editing.

It was great to vacation with my family, another fun, normal first with James.  He loved all the attention!

Check out our beach boy:

Sunbathing with Mommy.

Putting his feet up in the car seat.

With love.