Dallas's surgery has been scheduled for Thursday, October 27th at 9:15am.  He will have the Ladd procedure (to correct the malrotated intestine) and also have the port placed.  The Ladd portion of the surgery will involve taking his appendix out and then tacking down(for lack of a better word) his large intestine so that it is not at risk for twisting (a normal intestine tacks itself down during the first 4-7 weeks in utero).  Dallas's intestine is currently floating around and his body has made an attempt to tack itself down by creating useless "bands" near the top of the intestine.  These bands will need to be removed which causes such a significant amount of swelling, it takes several days for the intestine to recover and begin functioning again.

The surgery itself is scheduled for 2.5 hours.  His hospital stay is estimated to be about a week.  If things go perfectly, his stay could be as short as 4 or 5 days. 

Upper GI Results

Dallas had his Upper GI this morning and the radiologist confirmed the findings from the dye study last Tuesday.  His intestine is in fact malrotated.  I did ask the radiologist why his Upper GI at birth was normal, since it is my understanding this is something you are born with, and she said she could only guess, but it was probably just missed or it was at just the right angle to make it appear "normal," when in reality it was not.

We believe he will have to have the Ladd procedure to correct the problem. (I have researched this surgery online, but don't want to explain it until I get confirmation from the surgeon...)  The radiologist was sending report to his pediatrician and we are just waiting to hear back regarding meeting with a surgeon.  This finding is frustrating to me as there have been signs of potential GI trouble.  I did mention the events at his 1-year checkup which lead to the immune system check, but GI wasn't considered (probably because his upper GI at birth was "normal").

My chest feels heavy over this one, but I keep telling myself, THANK GOD Dallas pulled his g-tube out on Tuesday morning.  We are so lucky that this was caught and hopefully will get corrected before his intestine actually twists and creates a block causing very serious trouble for him.

The Implant

I would say the "equipment" necessary for Dallas to "hear," has been our biggest challenge over the last 3 weeks.  If there was a magical way to keep everything "ON" him, that would be wonderful.  It falls off 50 times a day.  It has added another component to everyday life and it is taking some getting used to for everyone. 

It's not only a challenging transition for us, but more so for Dallas.  It's a whole new world for him and he has to learn how to listen and respond to sound.  The first step has been teaching him to "detect" sound and then respond.  We have been learning ways to encourage a response by making it rewarding and exciting for him.  It is not as easy as many would think....this will absolutely be a process.  We have made the decision to go cochlear (as I have been calling it) and do not regret it, it's just far more involved than we ever could have known until we are incorporating into our daily life.  Both school staff and hearing team at the U of M seem to be encouraged by how Dallas is handling everything so far.  He has been through 10 different programs and many volume increases and so far he has been tolerating it all without a fuss.  He has his first round of official sound booth testing this Wednesday.  They will simply sit him in a chair in the middle of the room and present sounds to see how he responds.

This is the device pictured above.  The round piece is attached via the magnet that was placed under his skin.  The ear piece is the processor, and the portion clipped on his shirt is the battery.  The sound goes into the microphones on the processor, processes the sound and sends it to Dallas's brain through the piece attached via the magnet.  Technology is amazing.

"Exciting" Morning

Dallas, Dakota, and I were watching cartoons and playing in the living room this morning when I noticed Dallas's entire g-tube laying on the floor.  Yikes!  He pulled it out.  It was 7:30 am and by the time we got into the ER and had it replaced it had almost been 2 hours.  They had a little difficulty getting it in, but all went relatively smoothly.  There was a dye test conducted at the end to make sure the tube was in the right place, which it was, however, there is now speculation that his intestine is malrotated.  The Upper GI study done when he was born showed no indication of intestinal issues, and since this is a condition you are generally born with, we are scheduled to have a repeat Upper GI this Friday morning to confirm/deny the diagnosis.  If his intestine is in fact malrotated, he would have to have something called a Ladd procedure to correct the problem, but we are not going down that road until after the test on Friday.

Going Cochlear!

Dallas's cochlear implant was turned "on" today.  It went exactly as we expected.  When it was turned on, he cried.  Keeping it on him will be our greatest challenge (as you will see in the video below).  He is constantly taking it off, but as with everything else, he has to get used to it.  We felt relieved that he had a response and that everything seems to be working, that is really all we could hope for.

They have set the sound on a low setting and we will very gradually be increasing it until we reach a point where we all feel Dallas is getting the most out of it.  They do not want him to dislike the device, which is why they start low and move slowly.  We were sent home with 4 programs, meaning we can increase the sound as he is tolerating it.  Then we go back on Wednesday for a programming update where we will get more programs added to his remote and so on.

The video below shows the very first set of testing.  At this point they are making sure that the electrodes implanted are working properly.  This video shows a very obvious response from Mr. Dallas!

http://www.youtube.com/watch?v=ZXXDVgYnHFY

On the way to get my "ear" turned on!

15 Months

What I thought was going to be a great 15-month check up turned in to quite the opposite.  Dallas immune system lab results came back and he has what is called "Hypogammaglobulinemia." This is a disorder that is caused by a lack of B-lymphocytes and a resulting low level of immunglobulins (antibodies) in the blood. Immunoglobulins play a dual role in the immune response by recognizing foreign antigens and triggering a biological response that culminates in the elimination of the antigen.

Basically, he cannot fight off infection, nor does his body respond appropriately to inflammation, or certain immunizations.  And now for the treatment.....he will have to have a port placed under the skin near the top right side of his chest.  This port will then be used to administer monthly blood treatments.  He will need this blood for the rest of his life.  Once he is older, he will get it in the form of a shot.  The blood is taken from humans, pigs, horses, etc., then purified before given to him.  We do not see the immunologist until the end of October to get things started.

Also, his linear growth (height) is deficient.  He dropped from the 4th percentile to the 1st percentile.  We will be meeting with his endocrinologist in October to discuss potential treatment options.

This was all very unexpected and will take some time to absorb.  What I think about most is Dallas, so many appointments, therapies, surgeries, needle pokes, etc.  He goes through so much and still manages to be such a happy guy.  I pray there is never anything that takes the wind out of his sails.

We finally had our official follow up appointment today with the surgeon.  It lasted approximately 2 minutes.  He didn't even sit down!  Anyway, he did see some improvement in Dallas's face, which we have also begun to notice.  There are subtle signs that some movement is returning.  This is incredibly encouraging and gives us hope.  I tried to imply that perhaps this could have been prevented by placing the ear tube back in right after surgery, and his response was that it would have filled with blood and resulted in a loss of the tube, thus resulting in the fluid and inflammation problem anyway.  At any rate, it is what it is and he seemed optimistic about the improvement thus far and thought it could all be back in another month or so.  He also stressed that Dallas's nerve path is much different than "normal" and the final outcome is not black and white.  We have heard lots of different timelines, so I won't hold my breath on any one time frame......I just think we have to be patient and believe there is a good chance for a full recovery.

Monday we get the device activated!  We will video tape and post an update early next week. 

Waiting for the doc!

We Miss Your Smile

It has been a long week since the ear tube surgery.  We have waited anxiously for the movement in the right side of Dallas's face to return and there has been no improvement.  I left a message for the surgeon yesterday and we heard back this morning that it could take anywhere from 4-6 weeks, or even 4-6 months for his nerve to recover.  While this is very disheartening, at least our expectations can be more realistic and hopefully I can stop analyzing his every facial movement wondering if there was a slight improvement here or there.  For me, this has been very difficult to deal with.  One of my prenatal doctors gave me some advice when I was pregnant, which I didn't much appreciate at the time, but I know exactly what he meant by it now.  He told me that there was a bright side to having a child born with a disability; you can grow with their disability and start out from Day 1 knowing and loving your child as they are with their disability, versus having a typical child for years and then one day in their life having something tragic happen and then your child winds up different after knowing them a certain way for so long. While I know Dallas wasn't injured tragically, his smile was his signature. Without it, he is different to us.  The story mearly helps me understand why this has been so hard on me versus anything else. We got such a kick out of that boys grin and it made us smile every time.

Dallas is otherwise improving as it relates to his appetite and overall disposition.  He seems happier, although just not quite back to himself.  He is starting to eat and drink much better comparing to a week ago.  For now, it will be back to focusing on his strength, his eating/drinking/chewing skills,  and soon his hearing and speech. 

There will not be a morning that passes where I won't hope to walk into his room and see his big smile again, I can wait....just not forever. :)