Merry Christmas!!!

Merry Christmas to you all!  We hope you had a wonderful, blessed day.  We are looking forward to belting out Christmas songs for the next couple weeks.  :D

We had a wonderful Christmas Eve with my family, a relaxing Christmas day at home and wonderful phone conversation with Mark's parents on Christmas night.  We received many wonderful presents but the best present was that James reaches his goal.  On Christmas Day he ate 100% OF HIS CALORIES BY MOUTH!!!  Praise God and thank you to St. Rita and all you wonderful prayer warriors out there!!!  He followed up with another 100% day today.  Now we just have to work on that drinking...

We took things really slow Christmas morning with a leisurely brunch (James ate at the table with us for the first time!) and then decorated the tree and put baby Jesus in the manger.  We spread presents out during the day which was fun.  It was the first time James got the concept of opening presents.  He enjoyed pulling the paper off and then seeing what was inside which he found extremely exciting.  He got to play with each toy for awhile before we sat down to open the next.  That made for a very happy baby.

Here are a few pics of our Christmas and a little video of James' stellar eating and exciting presents.

Merry Christmas!!!

James got a cell phone like Mommy and Daddy.

Putting his ornament on the tree!

Eating mashed potatoes for Christmas dinner.

Still in love with this present.

With love.

JAMES CAN EAT!!!

After a year and a half with a feeding tube, I would like to officially announce that JAMES CAN EAT!!!!!!!!  :D  We had a breakthrough last night after a really rough day of him refusing to eat.  It was day #7 of trying to wean, his tube was still doing poorly and we picked up a solution that is supposed to help with the soreness.  At the end of another day of no eating on his part and force feeding on mine (I hate doing that, but he has to get calories somehow) I thought we might just have to go back on the tube and fight through the pain.  But, we kept trying.

When dinner time rolled around I knew he wasn't going to want to eat.  I force-fed the feed before and he wasn't about to be happy with me.  So, tried to make him happy.  I got him in his car seat and grabbed his favorite book, "The Foot Book" by Dr. Seuss.  We finished, I offered him a spoonful, he ate it and swallowed!  A fluke, I thought.  Then came bite and swallow number two.  Hmm...what if I read him another book and give him a bite in between pages?  It worked!  I guess he loves reading so much that he forgot to fight us tooth and nail like he has for the past week.  I am so glad I stuck with my gut.  I had a feeling he knew how to eat and was just holding out on us.  Maybe it was just a battle of wills?  I mean he is almost two.  :D

Today has been a terrific eating day.  With four feeds under our belt he has taken 350 calories orally.  That is more than he has taken in the past four days combined!  With two more feeds we should reach our goal of 75% daily caloric intake orally.  Prayer to St. Rita #1 answered.  The second part is for him to take 100% of his daily caloric intake orally by Christmas and drink 25% of his necessary fluid intake.  I think we can do it!  We'll have to work on drinking a little more, but I know he has that in him too.

Here is proof!  He was a little distracted by the camera, but it gives you a general idea.  :D

Thank you all for your prayers and please keep them coming.  This is a MAJOR victory, but there is still a long road ahead involving work for drinking, different tastes and textures, chewing, transitioning to a more "normal" eating routine, etc.

Will keep you updated!

James' first Christmas cookie!

He really liked it!

With love.

Keep Praying!

We may have had a breakthrough tonight.  Whoever is praying out there is doing a good job.  :D  Thanks so much for your prayers and and please keep them coming!  St. Rita, pray for us!

More soon.

With love.

Adventures in Eating

James' tube site has degenerated to the point where giving him food through the tube is painful.  We saw his surgeon and it seems that the bleeding is coming from scar tissue around the tube.  Our first GI doctors burned his stoma (area of tissue that tends to grow up around g-tube sites) with silver nitrate in order to "remove" it which caused the scarring.  There is no real solution other than a g-tube revision surgery which would require the doctors to cut off the area of damaged skin around the tube and stitch it back around the tube.  As the doctor said, this isn't really an option at this point.  We are doing everything to help the skin heal (we have already changed types of tubes twice in the last week), but we still need to get food in him.  So we are attempting to wean James from the g-tube.

We were planning to undertake this feat after Christmas.  About one day after we started planning for this event that was still supposed to be three weeks down the road we had to get him off the tube feeds. So here we are.  We are really struggling with everything.  He needs to eat, he knows he is hungry, he can eat, but he refuses to eat a significant amount.  Yesterday we got 100 calories in him between 5 feedings.  So, we had to put food in his tube overnight.  That didn't go well.  We got him the calories he needed but he woke up crying from the leaking fluid several times.  I was hoping when I got him up this morning that things would go better.  He had a full tummy overnight so he was in a good mood but still ready for food in his belly.  He took some sips of water, but pushed the spoon away.  We have decided, after five days, that we won't fight him, just calmly take him out and try again at the next feed when he is hungrier.  We'll see how it goes today but my guess is that isn't going to last long.  We have to get food in him, it isn't an option for him not to eat.  We have good friends coming over today that are going to help.  One weaned her daughter off a tube and the other is an OT.  So, we should be in good hands.  :D

We are really struggling with everything especially because it is such an emotional stress.  We adopted St. Rita as our family saint during my pregnancy with James so she has become an important part of everything we do with James.  We said this novena several times during my pregnancy and James' hospital stays and it always got us through.  The line that jumped out at us and still gives us hope is:

"St. Rita, so humble, so pure, so mortified, so patient and of such compassionate love for thy Crucified Jesus that thou couldst obtain from Him whatsoever thou askest, on account of which all confidently have recourse to thee expecting, if not always relief, at least comfort."

Even when we didn't always get everything we asked for Mark and I always felt comforted, a sense of peace.  Our prayer now is for that comfort for Mark, James, and I as we undertake this task.  We have asked St. Rita to intercede for us to the Heavenly Father that James may be off tube feeds by Christmas.

We love St. Rita.  She really was a remarkable person who sacrificed so much for love of her God.  Would you all be willing to pray this prayer with us?

St. Rita, pray for us.

(The practice of praying to saints is in the same practice as asking one's friends to pray for your intentions.  These friends just happen to already be in heaven and have a direct line to God!)

Our little terror destroying boxes.

With love.

What Do You Do With A Tube-Fed Kiddo?

James does not think he needs to eat.  I'm not sure if he is bored with purees or he just knows that his stomach will be full thanks to that lovely feeding tube, but he is not very cooperative.  So, I decided to try something new.  We have a pack of those baby puffs that are fun and crunchy, but dissolve easily.  So, because he refuses to put them in his mouth himself, I did it for him.  He thought using his teeth was fun!  He did spit them back out, but it was a start to chewing!

Check it out!

With love.

James is (Secretly) Crawling

First of all, thank you so much to all of you who talked to your senators regarding the Convention for the Rights of Disabled Persons.  IT DID NOT PASS!!!  The margin was only 4 votes, scarily close, but we did it!

In the last week James has begun some exciting new things.  His hand dexterity has improved greatly.  He can now hold things in his mouth (a big help for teething)!  We are working our way back to oral feeding a little more, although he has figured out if he "coughs" he can get out of it.  Luckily, we are smart enough to tell a fake cough from a real one so he can't get out of it that easily.  :D  James is working on pushing himself into a sitting position from his stomach.  We have seen him do it a couple of times and it only lasts for a second or two, but it is a start.  He really has to want to do it himself otherwise he just won't try.

But the most exciting this is he is (secretly) crawling!  I have only seen him do this when he thinks we aren't looking.  He will try to grab a toy that is in front of him and if he can't quite reach it he does this funny commando crawl from side to side.  The "long-distance" crawling comes in when instead of grabbing his toy he accidentally pushes it a little farther away.  When this happens repeatedly he goes a good two feet across the room before he finally "catches" it.  It is pretty funny to watch.  Yesterday, again when we weren't "looking", James actually got into a crawling position on his own!  Remember the "Overall Crawling"?  He did that!  He pushed up onto his hands and tucked his knees in, gave a good rock forward and fell on his face.  Maybe not the most successful first attempt, but he did it!  We try to help him sometimes, but he seems to do better on his own.  He is a determined little kid and likes to fight our attempts to help.  But, when he is determined to get a toy he will find a way!  So, as you can imagine, our floor is constantly strewn with toys.

I haven't been successful in capturing James' attempts on video.  I will keep trying.  However, I will leave you with a picture.  James had a good time with his aunts when they were home for Thanksgiving.  Here are pictures of Aunt Allison and Uncle Thomas hanging out on the floor with James.  The first one is my favorite but despite all my rotating, Blogger just won't rotate it.  So the second one is for "easy viewing."  :D

With love.

Yikes, UN!

I am not a big fan of the UN for many reasons.  This is one of them.  The UN is pushing a treaty on the "Rights of Disabled Persons."  The "positive" basis of this treaty is that the world needs a high standard of accessibility for people with disabilities:

Article 1 - Purpose

The purpose of the present Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.

Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

That sounds great, right?  I am all for the dignity of people with disabilities.  But, then things get scary:

Article 7 - Children with disabilities

1. States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children.

2. In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration.

3. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right. 
(quotes taken from the convention text at http://www.un.org/disabilities/convention/conventionfull.shtml)

This is the #1 thing that concerns me about this treaty.  Notice that it is the "state" that has the responsibility and authority under this article.  The states are given the go-ahead to have the final say over the parents of the child.  YIKES! 

I can give you countless reasons why this is a BAD idea.  If the state was in charge, my child would have spent hours in the hospital without the attention he needed.  Want one example? When his G-tube came out we had to throw a fit for them to take us seriously.  There is an open wound in my child's stomach, do you think you can take care of it?  He also would be vomiting daily because the doctors would force him onto a formula diet.  Thank goodness I had the final say on that one and we switched to a blended food diet so that we never ended up in the hospital with pneumonia.  And what about the numerous doctors I had to see saying, "something is not right with my child," until doctor #4 sent us to the hospital where James received treatment for the next month?  The state would have sided with doctor #1, we wouldn't have a chance for a second opinion or to travel to a better hospital or clinic that specializes in our son's needs because, well, that is just too much and too expensive for the government that is now in charge of my child's care.  This is a dangerous precedent and should be taken seriously by all parents.

Why do we need a global bureaucratic body to take decisions out of the hands of parents?  Why should we let them be a higher authority than our own government which is supposed to be a government of the people?

Things get scarier still.  Take a look at these videos:

The first part of this is very interesting.  Dr. Farris questions why the US would ratify a treaty with no intention of fully upholding it as is the "understanding" written of this treaty.  If you don't care about that part you can skip ahead to minute 3.

This video goes into other problems, especially regarding the socialistic intentions of the treaty.

Rick and Karen Santorum say it best:  

“The ultimate responsibility of all parents is to care for your child, a responsibility that only takes on added weight when your child has special needs. As parents of a beautiful, special girl, we know first-hand the blessings of loving our Bella. This is precisely why we at Patriot Voices are urging the U.S. Senate to vote against ratification of the UN Convention on the Rights of Persons with Disabilities (CRPD). The CRPD would usurp the rights and powers of parents here in the United States to do what is best for their special needs child by placing the law of the UN above the rights of the parents. It is the job of our elected representatives to preserve these rights, not hand them off to unaccountable international bureaucrats." (Read the whole article here)

Want more information on the "Convention on the Rights of Disabled Persons" (also interesting to note the lack of "person first" vocabulary)?  You can go to this website.

Please lobby your senators to stop this treaty!

With love.

Headbangin'

Hello, all!  I hope you had a great Thanksgiving!  I realized that we didn't get pictures on Thanksgiving.  Oops.

Today I have a video of James headbanging.  He tends to switch over to his headbanging dance when he lays on his tummy.  We found out he also likes it when we practice sitting, which we are working on a lot these days.  I don't mind at all.  You can see toward the end of his sitting practice he uses his stomach muscles to help him dance - awesome!  And it helps that he is starting to find activities to do while sitting.  He hasn't understood the point before.  :D  I am also impressed that our son seems to have decent musical timing as well.  :D

With love.

Hello, Old Friend

My trusty camera went missing for a week.  I could have sworn I placed it on our orange couch, but it disappeared.  Mark found it stuffed between the cushions tonight.  So, we will have more posts soon!  James desperately needs haircut #2 so we'll have some interesting before and after pics for you!  :D

With love.

I Whip My Hair Back and Forth

Our little guy is turning into quite the dancer.  I wasn't sure if his little head wiggles were in response to music but our trip to mass this morning confirmed my suspicions.  His little head started wiggling at the beginning of each hymn.  So funny!

Here is a little clip of his "dancing."  I mercifully removed my audio (I was singing to him) so you can just hear the song, "Everything" by Michael Buble.  Hope you enjoy it!

Problem is, our little guys is also turning into a "headbanger".  He likes to lay on his stomach and bob his head up in down or, in some cases, smack it on the floor.  We have tried to discourage this, for obvious reasons, but he thinks it is funny.  I will try to get a video of these crazy antics too.

P.S.  He is starting to feel much better.  Thanks for the prayers!

With love.

Testing James' Immune System

James had a rough day.  His intestines are pretty backed up so he hasn't been able to eat much.  I have been pumping him through with water and prune juice to try to loosen up his stool and get him back to normal.  Hopefully by tomorrow we will be seeing results.

Recently, we have been much more lax about germs around our house.  Since James' birth we have been extremely antibacterial lotion-friendly.  Actually, it had become my new best friend.  However, we didn't wanted to coddle his immune system forever and never let him build up a germ immunity.  So, we have been a little less cautious.  I still wash my hands every time I walk in the door, and use antibacterial lotion probably 10 times a day, but that is actually a step down from where I was.  I've also been much more lax about guests washing when they come in, but had made a pact to change that, now that flu season is upon us.

Well, too late.  James has his first major cold of the year.  He only had one other serious cold in his life, thanks to our diligent cleanliness.  Two weeks after he came home from the NICU it sent him back to the hospital for a month.

Our little man with a bad cold at one and a half months.

The good news is, he doesn't have a tube in his nose this time!  So, he should be able to breathe much easier.  And I am not sick due to the constant sleep deprivation of new parenting so that should also help.  :D  After James' stint in the hospital with his cold the doctors were very concerned about the strength of his immune system.  They weren't sure he could handle fighting small infections on his own.    I don't think that is true, especially now, but their words keep running through my head.  We will just have to keep our fingers crossed, pray, and get James good immunity boosting foods to help get him through.

If you have a chance to say a quick prayer for his speedy recovery that would be much appreciated.  We are hospital-free for seven months now and would like to stay that way.

With love.

Why Don't We Have Pumpkins Year-Round?

James went to his first pumpkin patch this past weekend!  This time last year we were gearing up for heart surgery and a little more than cautious about staying away from big crowds.  It is so exciting to live "normally" again and celebrate the beauty of the season.  Check out all of James' new experiences:

James went down his first slide!  He didn't have much of a reaction.

I thought maybe his "Rody horse" skills would translate to the mechanical horse.

But, he enjoyed watching Daddy have fun on the horse and race car instead!

Then Granddad and Daddy got thrown in jail,

And he got to swing with Grandmom.

Then, a tractor ride!

 A friendly slide competition between Daddy and Grandmom,

And, most exciting of all, James' first pumpkin!

His eyes lit up when he got that pumpkin in his hands.  He loved the rough texture of the stem and the nice smooth texture of the pumpkin.  It is such an important sensational experience for him to feel different textures, especially since he isn't crawling and exploring as many things as most kids his age.  He needs to get the sensory input in any way we can find!

If pumpkins make my baby this happy I think we should have them all year round (along with those pumpkin coffees and pastries :D).

With love.

See Ya Later, Sandy!

James braved his second hurricane last night!  Poor little guy was mad that he couldn't go outside the house yesterday and I think he could tell that I was a little nervous which made him more fussy.  So, by the time the lights went out at 8 last night he was understandably spooked.  But we did have some fun with it before we got our grumpy bunny to bed:

Glowing toys are more fun in the dark.

 Then we all slept in the living room near the fire.  The power came back on around 10 last night.  Yay!

Here's a video of our grumpy bunny in action yesterday afternoon.  I guess he's already learned how to ham it up for the camera:

Stay safe!  We are praying for everyone's safety!

With love.

Just A Quick Pic

We are frantically preparing for "Frankenstorm."  Take that with a grain of salt.  We did succumb and trek to Wal-Mart (ugh!) to purchase some non-perishables and we had to clear the outside of our little house, but it hasn't been hard.  I do still need to get some cleaning done and make meals for James and us adults in case the power does go out, but the stack of logs by the fireplace makes me think this may be fun.  Maybe.  We'll see.

So, as I shuffle off to clean the bathroom and blend sweet potatoes here is a quick picture to enjoy.  I call it "Morning Angel."  Hahaha.  :D

More soon, unless our power is out for days!

With love.

The "R" Word

Hi, all.  I started this post a couple weeks ago and have been struggling to finish it.

I have always found the "r" word (if you haven't guessed, I am referring to the word "retarded") degrading.  I began to hear it more often in middle school as friends used it as a way to flippantly brush aside moments of bad judgement or clumsiness.  It was "cool" to use this word because you could turn your every misstep into a joke.  I will, ashamedly, admit that I did slip into this habit a few times.  But, each time I casually used that word I felt revolted.  I knew that I was disrespecting a group of people who are already so often disrespected and deserve the dignity afforded to each human being.  I decided I would never use the "r" word.

It continued to bother me when others used it so casually.  But, what was I to say?  I didn't know how to politely point out that it was a rather degrading thing to do.  So, I just kept my mouth shut and retained my own principles.  Then, I had James.  My beautiful baby boy.  I saw firsthand what people were referring to when they used the "r" word.  But still, what do you say to politely point out that the "r" word is less than kind even if you don't mean it personally?

Here to finish what I started is a beautifully written letter by a young man with Down Syndrome to Ann Coulter who so frequently throws the word around on air.

An Open Letter to Ann Coulter

Posted on October 23, 2012by Tim Shriver

John Franklin Stephens

The following is a guest post in the form of an open letter from Special Olympics athlete and global messenger John Franklin Stephens to Ann Coulter after this tweet during last night's Presidential debate.

Dear Ann Coulter,

Come on Ms. Coulter, you aren't dumb and you aren't shallow. So why are you continually using a word like the R-word as an insult?

I'm a 30 year old man with Down syndrome who has struggled with the public's perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.

I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.

Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.

Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.

Because, Ms. Coulter, that is who we are - and much, much more.

After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.

I have to wonder if you considered other hateful words but recoiled from the backlash.

Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.

No one overcomes more than we do and still loves life so much.

Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.

A friend you haven't made yet, 

John Franklin Stephens
Global Messenger
Special Olympics Virginia

Wow.  I couldn't have said it better.

With love.

Heart Check!

We went in today for James' last post-op heart check-up.  Yay!  We were so excited to hear that his heart looks good and he does need another check-up for a whole year!  Way to go, James!  There are still some pulmonary insufficiencies that we need to monitor as, over time, things could degenerate to the point where he needs a new pulmonary valve, but, if that happens, it won't be for awhile.  And our cardiologist hopes that by that time medical technology will have advanced enough to do this procedure in a catheter lab instead of open-heart surgery.

James has been doing really well!  He is settled into our new house and enjoys rolling all over the new floor.  He thinks the kitchen is a great place to make "floor angels."  He is trying so hard to crawl but just isn't there yet.  We'll keep working.  We broke out the baby backpack when he was really grumpy (teething, ugh!) and tried it again.  His legs fit through the right holes this time and James enjoyed being snuggled close to Mommy or Daddy.  It is actually much more comfortable than I anticipated.  He also went on his first train ride with lots of fun family members and enjoyed crabs in Annapolis (well, we enjoyed crabs, he enjoyed hitting the table).

James is using his highchair now!  Our good friends gave us padding that their daughter used for extra support in the high chair and it has been a big help for James.  The car seat wasn't cutting it anymore as James liked to hunch forward which doesn't make for easy eating.  Check out our happy, messy boy!

I like being messy!

Taking ANOTHER picture?!

Just kidding.  :D

With love.

Tree, Tree, Tree

Sing along with me if you know this one: "Tree, tree, tree, tree, tree, tree, tree, tree, tree.  I love you.  Yes, I do.  Tree, tree, tree. Tree, tree, tree."

No, it isn't a hippie song.  It is Mr. Rogers.  Do you believe that?!  I didn't know anyone outside our family who knew that song until I met my husband.  I guess it was meant to be!

Anyway, today I share a video of James' first real experience with a tree.  Now that we have a backyard we can actually do these things with our son!  He was actually pretty interested and, I think, enjoying country living.

Happy Birthday, Daddy!

A quick post tonight as I am way behind on my James video editing.  James is finally settling into our new place, his teeth aren't hurting quite so much (he is getting his top three all at once as well as the continued arrival of his molars, thank you, Tylenol!), and we are getting into a much better routine.  James is not great at self-soothing, a "normal" delay, but we are trying our best to work him into it.  Now that he is (much!) bigger it is difficult to rock him to sleep.  So, we read him two books, sing him one song, and lay him down in his crib with a blankie.  I am still paranoid about blankets in the crib, but at this point he is strong enough to deal with it, just a mother's worry.  We have tried to find fuzzy sleeper outfits, but few places carry them in his size and fewer carry ones that work with his tube (zippers aren't so great, what happened to buttons?).  He is doing much better with this routine and, depending on the day, goes to sleep with little fuss.  He is liking the comfort of his blankie and I think he is starting to understand that crying is futile (so hard to just let your baby cry himself to sleep, but I know it is in everyone's best interests).  It did take awhile, though.

Things can be a little difficult because he really likes this routine.  His new expression of excitement is to kick his left leg, which he tends to do during the whole process.  But, we still seem to be able to get him to sleep.  Sometimes it is hard for us to push aside his cuteness and be firm in our routine.  :D

Last week was Mark's 26th birthday.  We had a fun time with a delicious salmon and crab dinner (the crabs were an issue as we didn't have mallets, oops!) and apple pie with our new landlords who are supper fun.  My family was able to come visit that weekend as well and we had a great time at dinner and squeezed into our little, box-filled, messy house for a yummy dessert.  James it totally in love with his dad.  I love seeing the way James looks at Mark.  And James is transitioning from "da-da" to the occasional "daddy" which is adorable!

Here are a couple pics from the birthday weekend:

Happy Birthday, Daddy!

Playing with the Rody they gave James for his b-day.

With love.

Goodbye Kangaroo Joey!

We returned our feeding pump today as James is now 100% blended!!!  Yay!!!  It was nice to get the machine and IV pole out of our house and get the go-ahead for more syringes to be shipped to us each month (we had been oiling ours until we were blue in the face).

Here is my post on syringes vs. pumps on my new blog, Ballon Bellies, a practical resource for parents of children with tubes.  There is only so much that doctors can tell us about life with our wonderful children that eat through a tube.  I hope Balloon Bellies can be a resource to help parents with the ins and outs of g-tube home life and living as normally as possible.  Please check it out!

Also, continuing off of my last post on Baby Noah's awesome dance moves I have included a new version of "Call Me Maybe."  I often feel guilty that I don't play more classical music for James.  He enjoys that particular genre and I know the scientific evidence that it is proven to help brain development, I just have a hard time giving up my driving music.  So, I thought this might be a great compromise.  Enjoy!

With love.

Baby Noah's Awesome Moves (And Good Music Taste)

Hello everyone!  I hope you will bear with me as the blog goes through some template changes and I am out of commission with unpacking boxes (we have a little house to live in, yay!).

A quick post tonight.  I love following Noah's Dad, a blog about the life of baby Noah, a 20-month-old with Down's Syndrome, through the eyes of his loving father.  Who doesn't enjoy seeing a father's love for his son and who doesn't love watching adorable videos of such a cute kid?  It's a win-win.  Mark and I woke up this morning, exhausted from our move, to find a video of Noah dancing and it made our day!  I am sure it will make yours as well!  By the way, Noah has great taste in music.  "Call Me Maybe" is my favorite song of the summer.  It never fails to make me happy and, in turn, puts a smile on James' face!

Check out his awesome moves!

With love.

Comment Away!

So, I couldn't figure out the comment system until I started to create a new blog today (more info on that soon, don't worry, I'm not getting rid of this one).  Now, anyone should be able to comment.  I figured out that there is a section on my settings that opens commenting to everyone.  So, feel free to comment away!

It seems Mark and I are trying to fit all the dairy foods I didn't get to eat this summer into September.  We had soft serve ice cream last night (my first real ice cream in almost a year!) and crepes with whipped cream today.  :D  And, bonus, we found the cutest little coffee shop near us with the most amazing pumpkin lattes (which I got to sample, not quite ready for milk full force yet).  My tummy has been tolerating everything extremely well considering!

More soon!

With love.

Nomads

We had to evacuate our apartment as it is contaminated with cigarette smoke.  So, we have been living out of a suitcase, taken in by various kind family members.  James is struggling with the adjustment, but as we settle into what we hope will be our new home things should calm down for all of us.  We know God has a great plan for us it is just a little exhausting right now.

We had to spend one night in a hotel and James loved the bed:

With love.

Ignite Your Natitude!

James loves watching the Nationals' baseball games on TV.  So, naturally, we though we should take him to a game.  We didn't, however, account for the large volume of noise and the terrible fog horn (which some family members love, don't ask me why! :D) that goes off every time the Nats hit a home run (which happens a lot lately - go Nats!).

James enjoyed sitting outside the stadium with Dad while Aunt Trena and I parked the car.  Mark said that every woman who walked by stopped to talk with our son - what can I say, he is a stud.  James loves being the center of attention so, naturally, that worked out well.  Once we were seated in the stadium, however, he got upset.  He started pouting, whimpering, and clinging to our shoulders because the noise scared him.  We felt really bad.  Luckily, he fell asleep on Aunt Trena and felt much better after his nap.  He was finally able to sit up and cheer for the Nats (who won, by the way).  Next time, at Aunt Trena's suggestion, we will have to bring ear muffs.

Here are a few pics.  Unfortunately, we didn't get any with his Nats jersey because he got a little too hot wearing that heavy thing, cute though it was.

 Our scared little man:

 Happy after his nap:

It was a beautiful night!

With love.

Blended Driving is Dangerous

I walked in to a family gathering last Sunday looking like a blended mess.  I sat in the back seat with James on the way to my grandmother's house, giving him his blended feed every few minutes.  Somehow, the tube kinked, the side medicine port popped open, and a huge burst of carrot, avocado, and quinoa exploded on the ceiling and rained on my head.

We pulled off and wiped the goop off my skin, but my skirt was ruined and my hair was gross.  We found a Target and, I found out later, Mark laughed as I traipsed in, covered in slime, to find the cheapest outfit possible.  I came out a little later with cleaning wipes to tackle the car and a decently cheap, cute outfit (my relatives claim that it was an excuse to buy something new, which is kind of true :D).  The car cleaned up surprisingly well, but the ceiling will never quite be the same.  I have to say, it is a self-confidence boost to walk into Target looking like I had spilled baby food all over myself yet not have a care in the world.

I didn't get a picture of me, although I wish I had.  I knew that, even though it didn't seem so funny at the time, it would be funny later, but I didn't take advantage of the situation.  So, to give you an example of a small-scale blended diet disaster here is a picture of my adorable son smearing his food all over himself while in the car:

Not sure if you can see the goo he smeared in his hair.  He looks pretty happy about it.  :D

With love.

Yelling at Dad

James loves his daddy.  He seems to know that "Dada" refers to Mark and has come to yelling it at him.  Mark has taken to yelling James' name back at him.  Sometimes it dissolves into the following exchange:

By the way, "Do you see how annoying that is" is a joke from Get Smart where a mom repeats everything her child says, not an insult to James.

With love.

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.