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!

9 Months

Dallas is 9 months old.  Wow.  Before we know it, he'll be turning one and he will certainly have much to celebrate.  He had his well child check up yesterday, which is somewhat hilarious as this child sees at least 2 medical professionals per week...so his "check up" was mostly updating his pediatrician on everything that's happened over the last 3 months.  Dallas weighs 21 lbs, 7oz, and is 27 3/4 inches long.  This puts him, on a "normal" growth chart, at 70th percentile for weight and 15th percentile for length.  We are so proud of our guy, he is growing so well.

His weight is getting to be a bit much for me (mom) to tote around in the infant car seat.  He cannot sit on his own, so we are still dragging the car seat in and out of everywhere!  That being said, he has added "medical" physical therapy, in addition to his already "educational" physical therapy.  The only difference here is that one is provided through the school district and the other takes place at Children's hospital.  We are already seeing progress since adding PT at Children's.  This is both exciting for us and for Dallas as he is also getting bored with lying on the floor....

The guy is eating incredibly well despite his reflux and nose structure/breathing issues. He knows no different and just does a wonderful job.  Although he has not used his g-tube in 3-months, his pediatrician does not want it removed until he proves he can drink from a cup, eat solids (other than baby food), and swallow thin liquids.  He does not have a repeat swallow study or feeding analysis until the end of April, so the g-tube will remain in place for at least a few months.

Dallas has a big surgery taking place on April 12th.  He will have his ears, nose, and throat examined and opened if/where necessary.  He will also be having a repeat CT scan and MRI to help us make decisions regarding cochlear implants.  Finally, his urologist will perfrom both a right and left orchiopexy. Ugh.  Big day for the D-man, but he'll do great.

Meanwhile, he and his sister continue to get to know each other.  Usually every morning Dakota comes straight into my room and demands that I get up immediately.  BUT, yesterday morning, she shouted to me from across the hallway "Mom, Dallas is awake, you need to get up."  I walked in to his bedroom to find her sitting in his crib with him.  She looked at me and said "See mom, I gave Dallas some toys while he was waiting for you."

Really?

Happy Valentine's Day!  It has been an exciting day for the Bauer's.  Dallas has been wearing one hearing aid for 2 weeks now (yes, we lost one) and this morning we are finally back to two.  He also got new ear molds, so the aids are fitting nice and snug again.  They did a sound booth test to see if Dallas would turn his head towards sound, and he DID turn his head at 65 decibels (which is a slightly higher volume that normal conversation).  He did not respond to lower sounds, but they aren't sure if he got bored with the test or if he truly couldn't hear the sounds.  Either way, we were all pleased to see him respond to the first set.  This basically tells us that if hearing aids can get him hearing at levels just above conversation, cochlear implants should get him one better.  Lots of "if's" with the cochlear implants, but this is a start.

Last week, Dallas got a helmet to correct his odd head shape.  Since he is still not sitting up, he spends a fair amount of time on the back of his head which doesn't allow for normal growth.  He is tolerating the helmet really well so far.  I think the worst part for him is that it makes him too warm.  He runs warm anyway, so this just brings on the sweat.  We will have to get some lighter clothes on him!  This process could take 5-6 months and he wears the helmet 23 hours per day.

Dakota started a mini-preschool class 2 weeks ago and she is loving her time there.  It is only one day a week for 1.5 hours, but I think it is just what the doctor ordered for all of us.  Dallas gets to spend some time with some new faces as well and I am becoming very educated with the other moms as we discuss child raising topics. :) 

Scott and I started sign language classes last Monday and we both left there knowing the alphabet.  We were excited about that and can ...very slowly...spell words to each other.  The instructor is wonderful and an inspiring person to boot.




Got Camo?






Dallas had a wonderful first Christmas.  Aside from a recent ear infection, he has been a happy and healthy little guy both throughout the holidays and over the last month.  He continues to eat like a normal healthy kid and has not required any feeds through his g-tube.  He is cruising through his clothes like crazy, I put a pants outfit on today and they looked like shorts...he's a weed and it's great.

We have recently stepped up the therapy to try and get his motor/muscle skills closer to where they should be.  He lacks in muscle tone and core strength.  His trunk muscles are floppy and he is still a far cry from being able to sit up on his own.  These therapy sessions are some of the only times I see Dallas upset.  He does not like to work on his muscles!  We'll get there.

Christmas Morning



Umm, is that a swim shirt?



Ok, I am ready to get out now.





Dakota "Cheese, now give me a sucker."




Why doesn't anyone else in this house have to be propped up on a noodle?



You are so funny mom!