Dallas hit a speed bump in the recovery process and we are back up at the U getting things resolved.  He has gone downhill since Monday.  He has been more fussy than usual, not eating well, but the kicker was when the right side of his face stopped moving.  Once that started, then the swelling near the incision site looked noticeably more swollen, so we called in and brought him into the ER around 9pm last night.  It took 5 hours to get an IV started and a CT scan.  The IV start is always more than a challenge, but this one took the cake.  After the first attempt, Scott was nauseous and laying down and the ER doctor was crying with me.  That was a first.  It is so awful to watch.  The second attempt was similar, new person, new ultrasound machine, numbing medicine on board, but this time they got it.  We were so relieved as this IV was a must to do a CT scan with contrast and they were so concerned about meningitis initially, that they wanted to get the antibiotics pumping immediately.

Thankfully, they are saying the labs and looks of the fluid on CT scan appear negative for infection, but could be causing pressure on the facial nerve resulting in the paralysis. Today, the surgeon Dr. Rimell is coming in on his day off to replace the PE tube(ear tube) that he removed during the cochlear implant surgery, to help drain the fluid. 

Hopefully, if all goes well, we can get the tube in and go home with oral meds.  They are optimistic that his face will  start moving again over the new few days.

We are all back home and Dallas is recovering very well so far.  He is slowly working his way back into his eating regimen and has been getting plenty of much needed rest.  His sister rejoined us this morning and you can tell her energy takes his mind off of anything he went through the last couple of days!

Late on Friday night, we had the chance to speak with Dr. Rimell's understudy who was sitting in on the surgery.  We asked her if she had seen a lot of implants done and she replied "Yes, but never have I seen anatomy like your sons."  She said it was very unusual and that Dr. Rimell was remarkable not only in being able to place the electrodes, but also knowing where the facial nerve would be and how to avoid it.  This story is relevant mostly because it made us feel more confident in our decision to stick with the U of M, versus switching his care to Mayo.  I agonized over this decision right up to this very moment before the conversation with this gal took place. 

Additionally, the bronchoscopy that was performed was completely normal from an anatomy perspective.  We were looking for some anomaly or slow reaction in the voice box as suggested by Dallas speech pathologist and feeding specialist.  It was good news to have this confirmed and also gives us the green light to go ahead with VitalStim Therapy if we choose to do so. This therapy uses electrical stimulation to help with dysphagia, i.e. difficulty swallowing.  It is very involved from a time perspective, my understanding is that it is 3 times per week for 3 months. It is also not guaranteed to work. We do not have time to incorporate this immediately into our regimen, but we may look more into this once we have the cochlear implant activated and are through the first several programming appointments and have a good speech therapy plan established.  We are currently set up to see speech at the U of M every Monday, and then programming changes take place separately.  At first there are a lot of programming changes and then it tapers off quickly once we feel like the program settings are optimal for Dallas.  With weekly  physical therapy and Early Intervention on top of that, the weeks are filling up.  The school district also has a speech pathologist that can join Dallas's team, and we are going to try and have her work with his U of M therapist and perhaps we can work out a plan together to have the school do therapy in our home every other week and alleviate some of the trips to the U of M.

Dakota is starting preschool this year!  She will go twice a week and starts the day after Labor Day.  I am very excited for her to be able to get out of the house and do something that is just for her.  I think she will love it and enjoy interacting with lots of kids her age on a regular basis.

Saturday Morning Cartoons! On a 52 inch screen TV.  The children's hospital at the U of M, is brand new and the rooms are crazy nice.  Too bad we didn't find the staff to be crazy nice, as that is far more important.  It was funny though, one of the nurses asked us if they could get us anything and Scott replied "Yes, how about a bigger TV!"

Cochlear Implant

After a long 5 hours, Dallas came out of surgery and is now recovering.  He is being admitted to the hospital for observation due to a couple of complications from the surgery.  He had some brain fluid leakage which has been stopped, but needs to be watched.  He also has some more significant airway swelling which he has been treated for, but once the medication wears off, they need to be sure the swelling does not return.

And now for the good news, the surgeon was able to implant 24 of the 28 electrodes.  This is encouraging and very good news.  Dr. Rimell said he thought about giving up a few times as this was one of the most difficult cases he has had.  We gave him a heartfelt “Thank You,” and off he went.  He had also looked at his airway for potential reasons as to why his swallow has not improved, and other than simply blaming CHARGE syndrome; he didn’t see anything else “fixable.” 

Overall, I’d say we are feeling very optimistic about the surgery results and just hope Dallas has a speedy and relatively painless recovery.

The implant will be activated on September 12^th, and this is the day he will truly hear our voices for the first time.  We will anticipate that, once this recovery is behind us.

Thanks for all the prayers and well wishes today.

Summer continues to whiz by before our eyes.  We took a last minute trip to the cabin last week and the kids and I had a great time with "Nana" Bauer.  Dallas and Dakota both spent time in the lake and got outside plenty to enjoy the heat!  Dallas has struggled to get healthy since the mid-July incident.  He has 4 teeth coming in and that has been hard on him.  I have come to the conclusion that his immune system is weak!  Seems like whenever he turns a corner, something else knocks him down. 

The cochlear implant surgery has been rescheduled for Friday, August 19th.  His operation is set to begin at 7:50am and last approximately 3 hours.  Fingers crossed we can keep him healthy and get this surgery behind us.

He continues to do well in physical therapy.  It's very slow progress, but it's progress.  He acts and moves similar to that of a 6-month old.  We don't focus much on that, it's merely a reference point to get an idea of where he's at and what others should expect when they're around him.  He is making strides in muscle strength and cognitive development.  You can see the wheels spinning up there much of the time!  He claps his hands and picks up a puff and puts it in his mouth.  He is very slowly and seldomly beginning to "chew" some introductory solids, such as puffs, cheetos, and yogurt bites.  We are also working on getting him to drink from a sippy cup. He plays with it and brings it to his mouth, but hasn't put two and two together yet.  I am very encouraged by the fact that his eating skills correspond with his physical skills.  Most baby foods will indicate an age, but also a skill that your baby should be doing before trying a particular food.  His skills match up with the foods he tolerates.  Very interesting!



In girl jammies!  His were all dirty, so Dakota reluctantly loaned him a pair of hers while at the cabin!



Today was supposed to be one of the biggest days of Dallas’s life thus far.  For us and our immediate families, we have been highly anticipating this day since the day we learned of Dallas’s profound hearing loss.  It is with great disappointment that I write the cochlear implant surgery has been delayed.

Dallas woke up Wednesday morning with a typical cold and after lunch he was clearly struggling to breathe.  I took him up to the ER and he was admitted that afternoon for respiratory distress.  He was treated with antibiotics, steroids, and neb treatments.  No-one knows why he was having difficult time breathing.  They treated him as though he has pneumonia, although there was no hard evidence that he did have it.  He was deemed unfit for surgery, as I suspected he would be, and we came home yesterday.  He’ll continue to be on oral steroids, an antibiotic, and neb treatments for the next week or so.

We had the second opinion down at Mayo yesterday and I left there with mixed feelings.  This surgeon had a far different demeanor and feeling regarding the surgery.  He was very positive and confident regarding the implant itself.  He was not confident regarding long-term outcome, and stated it would all depend on how Dallas's brain reacts to sound.  His brain may decide to take in the sound, but do nothing with it.  He stated that an improved quality of life for Dallas is a reasonable expectation.  He did agree that the implant is the only way to get Dallas any sound and also concurred that the hearing aids are virtually doing nothing for him at this point.  He felt like there were two options, do nothing, or do something.  This reassured us in our decision to go ahead and give the implant a try.  While I did like this surgeon's personality and overall disposition, it's hard to erase the connection with Dallas's current surgeon at the University.  He does express more skepticism, but we believe that to be his MO (so to speak).  He likes to under promise, and then over deliver.  Let's pray that's the case this time.

We have not rescheduled the surgery yet, but my best guess is that it will be about 6-weeks out from now.

Dallas has his first independent skill!!!!

Dallas had a great birthday and birthday party.  He could barely stay awake through his gift opening and did not make it to the cake and ice cream, but he enjoyed the celebration just the same.  Our family made the day very special for him and I know he felt their love.

The month of June went by so fast, I cannot even recall what we did.  I do know we continue to have appointments every week and that keeps us very busy.  We have a surgery date set for a cochlear implant in the right ear on July 15^th.  This is less than 2-weeks away and the anticipation is certainly leading to fear as the day gets closer.  Between now and then, we have 2 separate days scheduled at May to get a second opinion.  We will not have much time to make a decision after the second opinion, but I am hoping that my gut tells me right away.  I just want the ENT surgeon at Mayo to believe that there is a shot for success with this surgery.  I also want to hear that he would DO the surgery based on the information we have to this point.

Assuming the surgery goes as planned on the 15^th, Dallas will also have a bronch.  My understanding is that they will send a scope down his throat and look more closely at his voice box.  This will help us understand if there is “a flap” that isn’t opening and closing quickly enough to allow Dallas a normal swallow.   Depending on what they find, there may be something surgically done there as well.

On a fun note, Dallas had a great 4^th of July (which also happens to be his 1-year anniversary of the day we brought him home!).  He spent lots of time outside and went in the lake for the first time.  He did manage to get a flu bug and an ear infection, so he missed out on one day of fun, but then he was right back at it!  His family and friends commented relentlessly on his good nature and cute smile. J



Happy Birthday to me!



Is this supposed to be relaxing?

We kept a wet pair of swim trunks on his head to keep him cool!

Fun in the camper during a hail storm

The kids are really into the picture :)

I love you mom!!

Dallas turns “1” today!  Happy Birthday big boy!!!  I have slightly dreaded this day only because I knew it would force me to think back to one short year ago……

We went into the hospital on Wednesday morning, June 9^th, 2010.  This was not a day of excitement; it was a day of fear.  We knew he wouldn’t be able to breathe, and that alone was petrifying.  There was an incredible team of doctors and thinking back, they did a fantastic job of making us feel like this was a “normal” delivery (other than the fact that there were about 15 of them in the room).  And then it was finally over, he entered the world, we got a photo, and he was taken to the NICU.  With the speculation of CHARGE coming up just 5 days prior, we were looking for physical features of the syndrome immediately.  He was only hours old and the doctors were filing in to represent every organ system.  The news just got worse and worse…

"His sight is compromised by coloboma’s, his hearing is not normal, he has a hernia, his heart cannot function on its’ own without surgery, his nose is blocked and we’re not sure than we can operate, he has one kidney and we aren’t sure if it’s functioning 100%, he may have some brain “leaking” into his nasal cavity, we aren’t sure if his body is making the right hormones, and so on.”

I felt like we were being attacked, I couldn’t remember who said what and got so lost in all the terminology. I sat and wished so hard to just be sitting there holding Dallas and having the biggest stress be too many visitors.  But that wish evaporated every time a new person would come into the room….they started out every time by saying “Have you heard of CH….and I’d interrupt and say, “Yes, we know about CHARGE.” 

Fast forward one year and we can easily see that Dallas is every bit perfect for our family.  He’s an incredibly special boy and he warms hearts. J  So, stop by if you need your heart warmed up!!

Today is a day to celebrate all the good that has come Dallas’s way.  He makes us believe in miracles and teaches us to be happy.  He has been through a lot during his first year and with pink eye and an ear infection out of the way already this week, we are hoping he has a truly HAPPY Birthday.

The link below is to a slideshow that captures a picture journey of his first year.  You may need to download a recommended player to view the show depending on your computer.  Enjoy!

http://www.photodex.com/share/bauerjackie/apcg9mg4

We are celebrating his birthday tonight with family and will post some pictures and report back soon!