Post Delay

Hi all,

We get a vacation!  It is our first vacation since...awhile.  So, I will take a break from blogging.  But, I will be back in early July.

With love.

Sunrise

I've been having flashbacks again to my pregnancy and our stint in the NICU.  This morning it hit me what it meant to live in the moment.  Our life with James has taught me how uncertain this world can be.  It has taught me to treasure the time I have with my family as no one ever knows when the end is coming.  Every time I kiss my child goodbye or watch my husband walk out the door I wish to express just how much I love them both.  I may long for more - a bigger house, more children, more free time - but God has given me what I have and I am so very thankful for everything.  I want to make the most of what I have so that I can say that I am truly living.  That doesn't mean planning wild parties or accomplishing daring feats.  It means helping my child reach his potential, putting everything I have into his therapy every day.  It means washing the dishes for the love of my husband even when I  wish I were still tucked warm in bed.  It means getting outside for walks, just enjoying the beauty of everyday.  It means putting down the computer and picking up the guitar or some other new hobby I wish to perfect.  It means loving life for myself and my family.

I want the reality of daily life to inform my actions.  I want to make the most of what I have been given, to love every second of the life I have been given.  For me, this means teaching myself to be a morning person.  It truly is amazing, I can wake up at 6AM and not truly be started with my day until 10AM.  Yes, I do get things going, but my mind isn't totally in the game yet.  So, to help the situation, I am going to start two logs.  One for James' speech therapy and one for his physical therapy.  In addition to the daily schedule I like to set for myself, these will keep me accountable for aiding James' development.  It really is a serious matter as this development will affect the rest of his life.  We have seen how well James can accomplish physical feats when we take the time to build his strength and repeat the motions until he is competent on his own.  He is going to be a strong young man.  Life is good!

We started work on clapping last week.  Look how far he has come:

With love.

Our Little Fishie

We took James for his first swim.  Check out how cute he was:

We bought lots of supplies to try a blended diet courtesy of a wonderful friend.  We'll let you know what we do and how it goes.

With love.

Close, But No Cigar

We headed up to Johns Hopkins today to see if the gastrointestinal program could help with James' dietary issues.  We were cautiously optimistic as many other doctors had brushed aside our concerns regarding James' propensity to vomit any formula he is given.  But, when the doctor said we could get him on a blended food diet we were ecstatic!  Just what we wanted but no doctor in our area could help us do.  We had a great five minutes as the doctor went to find the nutritionist to get us started.  She returned, sans nutritionist, to say that their blended food diet was being revamped and wouldn't be able to get us started for another couple of weeks, until testing was completed.  They gave us a new formula (formula #4) to try in the interim.  We are left conflicted.  Should we try the formula?  Is it possible that this formula work?  But, looming even bigger, what if this formula is just like all the rest that make him gag and throw up, cause constipation, and lead to nasal congestion and airway irritation?  As we head off to vacation we need a food "back-up" plan in case we run out of milk. It looks like we have reached the last resort where we develop a blended food diet on our own.

I understand the doctors' hesitation to get us started on a program they themselves don't understand.  But, it is sad that we are at the point where formula is the standard recourse for kids with tubes.  Shouldn't blended food diets be an important topic in medical school?  Feeding tube are more and more common, not just for kids, but also for adults who can no longer eat by mouth.  Shouldn't we try to help these people live as normal a life as possible?  Wouldn't real food help achieve that goal?  Doesn't real food, not processed junk, help people feel better and live healthier?  Shouldn't our child be offered that same opportunity?

I am glad to hear that Johns Hopkins is developing a program to promote blended food diets.  I sincerely hope this will catch on and spread to other practices.  As I research the benefits of blended food diets I find many stories of parents in our same situation: their tube-fed child is not thriving on formula, they want an alternative and the doctor will not offer one.  The parent then takes control of developing a suitable diet, makes it at home, feeds it through the tube and, very soon, the child is healthy, happy, and thriving.  There is definitely something broken when we are offered two options: breast milk, which I won't have enough of for much longer, or formula that makes him throw up.  What would have been done before formula was available?  There has to be another option.

We will have to sit down tomorrow and make some big decisions.  We don't like the idea of going it without a nutritionist, but it may be necessary.  We have seen the difference a healthy diet makes for James.  Now that the formula is out of his system he is thriving.  His physical development had moved forward with great leaps and bounds.  As parents, we have the right to do what we think is best for our son, to take control of our son's diet if necessary.  We have always advocated for our son, but this is the biggest counter-medical decision we have had to make.  I am the one home with him, watching his face turn red as he gags and finally throws up his entire meal.  I am the one whose heart breaks when I see him in pain.  I am the one who understands the immensity of his dietary problems.  James has gone through enough, it is about time we make his life a little easier.

Please keep us in your thoughts and prayers as we decide how to proceed.  If we go forward with the blended food diet I will provide more information.  Maybe it can help some other parent out there.

Here's a little video to lighten the mood.  James LOVES the paper on exam tables.

They See Me Rollin'

Our physical therapist said, "When I hear that [he is getting into everything] I know we have done something right."  It seems that is where we are at.  James is getting into everything.  He ended up with grease stains from rolling over to the sliding glass door today.  Later in the day, we were playing together on the floor, I looked away for a minute and he had rolled to the other side of the room.  Luckily this place isn't so big that he could get into trouble.

Check out his awesome rolling skills!  I cannot believe how easy it is for him now.  Halfway through the video you can see his awesome crawling posture as well.  He is determined to move!

Surprise!

James gave me a lovely surprise this morning.  While working on a grocery list in the other room James somehow pulled his tube out and flung it around the room.  He was pretty proud of himself.

This is how I found him:

I caught his reaction on tape - it is pretty hysterical.  Of course, it isn't good that he likes pulling his tube, but it is rare that he gets as far as pulling out of his stomach.  I have always been paranoid about him getting hurt by his feeding tube so I always stay close by when he is attached.   Hopefully it won't be a problem in the future...  He just needs to wear onesies instead of t-shirts.

With love.

Learning to Clap More Than His Feet

James loves clapping his feet, but he hasn't quite gotten the hang of clapping his hands yet.  Today his therapist helped him learn to clap two toys together.  We're still working on it, but we are getting somewhere!  Check out how cute he is:

We even caught his "Popeye" look on camera.  :D

With love.

Tricks of the Trade

James has had a rough time with his diet lately.  His upset tummy was causing issues when it came to oral feeding.  So, other than changing his diet again (which is definitely getting him back on track), we had to get creative.  His speech therapist suggested letting him chomp on a large carrot stick.  So...

He loved it!  After letting him play with that for awhile I broke out a jar of baby carrots (a new food for him) to see if the taste recognition would make him more comfortable with the food.  It worked!  He ate more than he had in several days.  Although, Mark came home and took over feeding him and he ate a lot more, so I'm not sure which was more effective, an interesting taste or a funny daddy.  :D  As long as he is eating, I don't care what makes the difference!

Good buds!  And look at James lift those legs!  Great stomach workout!

Happy Graduation

Aunt Laura graduated from high school on Friday.  James loves the ceremony because it was outside (his favorite place to be) and he thought everyone was clapping for him.  :D

Congratulations, Laura!