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!

After two rounds of the flu for Dallas, we finally made it to his neurology appointment.  The neurologist does not believe that his 2 seizures were febrile ones.  He is calling them generalized seizures....which I think pretty much means completely undefined!!!  Because the seizures were so different and we are not able to give exact information regarding them given the state of panic we were in, it is hard to identify exactly what type of seizure each one was.  The chances of Dallas having another one are 50%.  We held off on starting an anti-seizure medication, but that will be the course of action should he have another one.  The more time that goes by without a seizure, the better for Dallas (and for us!).  The neurologist thinks that given Dallas's developmental delay (due to CHARGE), and Dandy-Walker variant, Dallas is a perfect candidate for seizures.  For now, we just wait and see.  He did give us an emergency stop seizure medication to give Dallas should he have another one.

Our biggest focus right now is eating.  He had another swallow study done and he did not pass.  He still cannot swallow thin liquids, which was a disappointment as we thought by now he may have outgrown it.  They are looking more into potential reasons "why" his swallow is not coming, just to make sure there isn't something that can be done surgically.  It is most likely due to the anomalies affecting his cranial nerves that impact his ability to swallow.  He does have airway issues that also contribute.  We are also attempting to get him eating mashed up table food, baby puffs, cheetos, anything besides pureed, chunk-free baby food!  We are having some luck, but not much.  This is definitely a marathon, not a race.  He has tolerated some changes very well, such as eating food at room temp versus very warm.  This helps with feeding on the go.

The second biggest focus is his low muscle tone.  Still working on sitting.  This has taken months and it can get very discouraging at times.  I told him we have to be sitting independently to open presents at his birthday party!  Only about 2-weeks left.

Dallas amazes us and makes our hearts grow bigger everyday.  He is truly a joy in every way.

His big sister will be turning "3" on May 28th, and we celebrated her birthday yesterday!

Seizure #2

Yes, another seizure.  We thought this would never happen again, let alone 3 weeks after the first one.  This time was different......

Two days ago, we got up and started the day with a Target run.  Got home around 10am and Dallas just wasn't himself, but then again, he hadn't been himself for a couple of days now.  I gave him Tylenol and blamed his fussiness on his new teeth coming in.  We had an appointment scheduled at the U of M to discuss the MRI results and what it meant for cochlear implants.  My mom rode with me to the appointment for a second set of ears, and what else would you rather do on your day off!  Dallas slept through most of the time we spent at the U, and we headed home about 3:30.  He was so crabby on the ride, I thought we should stop in Inver Grove Heights and get him some Motrin ( I don't carry this with me, since he is not supposed to have it).  We had just parked in the lot when he started shrieking so loud, I immediately knew something bad was going to happen.  Just then he started convulsing, we both flew out of the car and got him out of his car seat.  My mom saw him first and said his color remained good while it was happening.  The seizure itself lasted about a minute, then a few more minutes for him to regain eye contact and start to cry.  We followed MOST of the directions on what to do should this happen, but I did panic and call 911.  After a few hours in the ER, they ruled out pneumonia, RSV, or other bacterial infections and sent us on our way with a directive to follow-up with a neurologist.  So, that is that.  I've made the calls and we are just waiting to hear back on whom to follow-up with.

The MRI results do show signs of Dandy-Walker, not the total syndrome, but a variant of it.  We were previously lead to believe that this was not the case, so this news was highly disappointing.  It wasn't a focus before, but the seizures have my wheels spinning...burning rubber in fact.  More on this later.

The MRI also gave the ENT surgeon a better idea on which ear to go after first relative to the cochlear implant.  We have decided to go ahead with it, and the surgery is currently being scheduled.  It will take 2-3 months to get the OR time, so meanwhile I am going to Mayo for a second opinion.  This is a big deal.  Even if everything goes well during surgery and he is able to implant every electrode, there is still a chance that Dallas's nerves will not respond, etc, etc.  It's going to be a long road and there are great risks, but we feel the benefits outweigh the risks and we're praying for miracles.

The plan is ever changing and we'll see how the neurology piece plays out over the next couple of weeks.  Meanwhile, the D-man has been having some fun....see below!

Laundry Basket Ride Anyone?

Cheeseball!

I love Easter!

First Haircut, the "before" picture.

After!  Holy Handsome. :)

Another one down

Dallas is home and has made it through yet another surgery.  I know I say this all the time, and I am bias, but this kid is amazing.  He was exceptionally good yesterday and last night, he just goes with it. He's our Rockstar, yes with a capital "R."

The ENT surgeon (Rimell) did a thorough exam and noted his nose was wide open, and ear tubes were clean and in place well.  So, he virtually did nothing surgically!  Great news. Also, he reviewed the CT scan which was completed to help determine success rate of potential cochlear implants.  The MRI is still needed to confirm cranial nerve exsistence, while the test is done, Rimell has not yet reviewed it. He expressed his concern, again,  given Dallas's anomolies, but also noted that Dallas has positvely surprised him already and wouldn't count anything out.  He admitted that he never thought Dallas would get by without a trachestomy and look at him now....

The urologist was able to complete the right and left orchiopexy with some difficulty, but all went good and he was able to do it all in one surgery - big blessing there.  He made 3 small incisions and 2 BIG incisions, ouch!  Let's just say that I nearly passed out when they first removed his diaper to discuss care.  He did give us some Tylenol with codeine though, which really seems to be working for Dallas. 

On a completely different note, Scott and I attended a seminar last week that was intended for parents who had a child that was both visually and hearing impaired.  We learned a great deal and met some wonderful parents as well. 

Morning of Surgery

Waiting to be taken away!

Hangin' with my keeper (she looks real happy!)

First Stroller Ride with no car seat - I feel free!

Who says you can't sleep through a bath!

Naps are for SISSIES!

A Haunting Memory

On Monday, April 4th, Dallas had a routine ECHO in the morning and an appointment to change his g-tube afterwards.  His ECHO went very well, and his g-tube was changed without any trouble.  Dallas didn't seem 100% himself, he wasn't eating his normal amounts, but wasn't fussy either.  We were at Children's for about 4 hours and then headed to my sister-in-law's (Renee's) house to pick up Dakota.  When we arrived. she was napping, so Dallas and I settled in for a visit.

Fast forward about and hour, Dallas was laying on the floor and Renee and I were next to him.  He looked tired and uncomfortable and he did a little shake, almost like he got a chill or got spooked!  I smiled and looked at him and it only took me a few seconds to realize he wasn't breathing.  His face became dusty, lips were blue, eyes rolled back.  Renee (thank GOD) called 911, and I proceeded to pick him up and scream and scream and scream.  After panicking all over the living room, laying him down, blowing air in his mouth, trying to think of how to do CPR, I ran outside with him and screamed for help.  It's a bit of a blur as pure panic took over my mind and body.   The 911 operator was telling Renee to get Dallas laid down flat on his back, so she started to tell me to do that and I came back in the house and laid him down.  Just then a couple of neighbors came running in and one of them knew what she was doing and took Dallas and rolled him over, by this time Dallas had food running out his mouth and nose and his eyes were back, his color was returning.  He was starring into space and although didn't seem "with" us, I knew he was alive. However,  I continued to be hysterical by the thought of losing him.

We went in the ambulance to Children's and they did many tests, although they said right away that Dallas had most likely had a febrile seizure (fever related).  This type of seizure is apparently very common (I have never heard of it) and happens in 1 of 25 kids during the age of 6 months and 5 years.  Half of these kids will never have another seizure, and the other half will go onto to have another one, or keep having them into childhood.  Prevention of fever is the key to keeping this from happening again, but in Dallas's case, we think the seizure might have happened first and then the fever.  Fantastic.  Anyway, they tried hard to find a source of his fever, and we had no luck.  All of his blood work came back normal, as well as his urine test and chest x-ray.  They also did a CT scan, because Dallas's mother (i.e., me) insisted on knowing that this wasn't a brain initiated seizure.  This too, came back normal.  On a side note, the ER stay was brutal for us and for Dallas.  It took 3 different people, 3 tries in his foot, one in his head, and finally ended in a finger poke, to get all the blood they needed.  It was gut wrenching to watch, but you know they have to get the blood in order to help him, so you can't beat them up!  The very second someone starts checking Dallas's veins, he knows what's coming and he just cries and cries.  It sucks.

His fever continued all day yesterday and we think it's teeth related.  His gums are swollen and he doesn't like to eat.  He seems to be feeling a little better this morning.  Happy boy!

I have informed Dallas sternly, that he is to never do this again. 

Watching Tangled, Dakota requested his presence and he was happy to oblige!