Headline News:

Dallas does NOT have Dandy Walker. 

This was by far the most exciting news this week.  I was tired of the label on his charts, it had followed him since the diagnosis made while he was still in utero, and I asked that the MRI scans be re-reviewed.  This resulted in the news today! 

Let's see, other updates...he is 12lbs, 9oz and 23 1/4 inches long.  He is in the 1st percentile for height (hey, we're on the charts!), 4th percentile for weight and 20th percentile for head size.  They are very happy with his growth and said to keep doing what were doing. 

Because of his respiratory issues, he will have to get the RSV shot...this consists of a shot every week until March!  Yikes.  Can't we leave the poor kid alone!  I suppose it's in his best interest, but you'd think they could come up with a better treatment plan....like one that involves just one shot for the season.

Anyway, it's been a bit of a circus in the household this week since Dad left on Wednesday for a hunting getaway (mine is coming up, my getaway that is..not hunting!).  A week doesn't go by where I don't have to ask someone for help in some way.  This week was no different.  As most of you know, I am not good at asking for help - but I have definitely had to let it go because I couldn't do it without the lending hands of friends and family.  I guess it's been good for Dakota to get breaks away from home, she is a very busy 2 year old and misses all of her friends and busy schedule she had at daycare.  She helps take care of Dallas and does really well at understanding when he has to come first.  She'll run a bottle over, "help" give medications, and always announces when he's crying.

Enough for now, Mr. Dallas Bauer is changing every day and continues to amaze us.  We are looking forward to a working set of hearing aids on Monday.

Last week was very busy with appointments.  On Wednesday, we saw the ENT surgeon and he checked Dallas's nasal openings.  There was still some inflammation from the surgery, so there was difficulty passing the catheters.  The doc shared his optimism relative to Dallas getting by this long without a trachestomy.  He feels like he is going to be successful with these surgeries.  We discussed a couple of different medications to try after the next surgery.  He was very open to my suggestions and paired them with some of his own to come up with a final game plan.  I have great confidence in his ability and willingness to do what is best for Dallas.  He reminded me that he is treating him as if he were his own son, and that meant a lot to me.

They placed a PH probe in Dallas's nose and down his throat for 24 hours to measure the actual amount of reflux he was having and the test showed that the medication is controlling the reflux pretty well.  Ahh, some good news!

Thursday and Friday we were working on getting the new hearing aids working correctly and we still have not gotten it figured out.  They still whistle when they're in his ears, so that's my first call of the day today.....

Dallas had a busy weekend, he spent time with his Grandma Bauer and Auntie Jamie so that Scott and I could get out both by ourselves and with Dakota.  We are sure lucky to have the wonderful family we have, there is a lot of help and love and we appreciate it very very much.

Dallas will have surgery again on Monday November 8th.  They will open his nose, perform a CT angiogram of his heart to check the artery that was initially repaired, and repeat an in-depth hearing exam.

Dallas has had a big week.  He is changing every day and starting to act more like a lively little baby.  I believe he feels much better with his nose opened up, his reflux under control, good weight gain, and a bigger G-tube.  He is doing a lot of smiling, kicking, rolling back and forth, and talking.  I was initially very encouraged by all the sounds he makes (thinking maybe he could hear himself), but found out that babies will make lots of sound even though they can't hear themselves.....

We had an appointment at the U of M this morning for his hearing.  He was fitted for new ear molds as he has long outgrown his first set.  He will also be getting bigger aids with more amplification to get him the most sound possible.  The molds will take a week to finish and then he will be back to wearing his aids.  Although the aids alone don't provide enough sound frequencies for Dallas to develop normal speech and language, it's important for him to wear them and be exposed to as much sound as possible.  Additionally, he needs to wear hearing aids for 6 months in order to qualify for cochlear implants.  Serious planning for these implants will begin the first week of December.

I thank my lucky stars every day for Dallas's pediatrician.  She is wonderful and did a great job this week of connecting with ENT and Respiratory to discuss a plan for Dallas that we all can feel good about.  While ENT does not feel Dallas is out of the woods for a tracheostomy, he does feel like there's still a chance for Dallas to get by without one as well.  After some research brought to my attention regarding these surgeries, I was encouraged by what I had learned, but was also questioning whether all of these nose dilation's were really the best for Dallas.  ENT explained that after 6 months, there's a good chance the tissues might begin to stay put versus closing in each time.  We have an appointment next week to see how his nose is doing since the surgery.

Dallas still destats at night, but it does seem to be improving.  After Dallas's pediatrician talked to ENT, he explained that it takes a good week for the inflammation to go down and for you to notice an improvement in the breathing.  If he continues to have desaturations, they will try to increase his Hi Flow and see if that helps.

The biopsy of the esophagus cell tissue showed signs of reflux.  This is no surprise, but Dallas's dose of reflux medication was increased in response.

So, the plan is to continue to watch and see how Dallas responds to surgery and not make any quick decisions regarding a tracheostomy.  It feels good to understand the "plan" and to trust the doctors handling his care.  I keep learning to ask my questions, do my research, get second opinions, and press for answers, until I (we) feel good about everything.

Dallas and I had a full day at Children's today.  We started with an ECHO, an ultrasound of the heart.  This showed that the artery that was initially repaired may be narrowing.  They are not able to tell from the 80 ultrasound images how much this artery has narrowing.  In order to see this in greater detail, a CT angiogram will need to be performed.  However, since this procedure involves sedation, ideally they would like to time this with another surgery provided there is one in the next 60 days.  For now, we were told not to worry.  Yeah right.

We met with the pulmonologist (lung doctor) next.  Unfortunately, Dallas continues to destat at night even with an open nose and HiFlo. He has a couple of more nights to get his numbers up before we'll need to decide if the tracheostomy is necessary to get this little guy the air he needs to grow.  This doc prescribed a nebulizer treatment once daily to try and help with the secretions as well.  This medication also contains a steroid which will help the inflammation in his nose.  A few of Dallas's primary caregivers are discussing the "plan" in the next couple of days.

Still do not have biopsy results from the surgery....should hear something tomorrow.

Dallas was such a good boy today.  So easy going, even smiled a time or two.