FIRST STEPS

A Monumental Moment!

http://youtu.be/jtrSWs0XX6g

GI Workup

We followed through with a GI Specialist and just completed a full lineup of tests.  Last Friday Dallas went in for an Upper GI, which showed severe reflux and also showed his stomach sliding up through his diaphragm (hiatal hernia).  Then this morning, he was put to sleep and they performed an esophageal endoscopy (scope down the esophagus) with biopsy (to test for food allergies).  The esophagus looked great and was undamaged by the reflux (meaning his medication is doing its' job of minimizing the acid).  The hernia was very small and only a tiny bit of stomach was seen sliding.  Given the good condition of the esophagus and the small opening from the hernia, no surgery is needed!  They also did an abdominal ultrasound and all organs looked good.  Blood tests and biopsy results are pending, but overall good results all around and from my perspective, GI is not causing the vomiting.

I suspect that the chronic vomiting will be an issue for neurology, but I will give it a rest for a couple of weeks before I begin to go down that path.

Easter was a happy one and the kids enjoyed their Easter baskets....especially Ms. Dakota.  Here are a couple of pictures from the day.

With their cousin David

Minus Dad..he had to work on Easter :(

"Talking"

Dallas has kept us busy since his last seizure.  He recovered fine from that, and then the following week as we were leaving Physical Therapy at Children's, I let go of his walking wings for a minute, and he managed to trip himself up and fall face first on the hard surface of the elevator.  It only took a few seconds for the blood to start gushing from his mouth and nose and the sight of it put me into a state of panic.  The elevator doors shut and we were moving as his blood and my spilled coffee were rolling across the floor...I felt like I was in a movie.  I hit a bunch of buttons on the elevator, not really thinking clearly about what I should do.  We ended up back in the PT area and got some towels to clean him up and ice for his mouth and nose.  I put my finger in his mouth to see if his teeth were in tact and they seemed to be.  We went to the ER, but he had calmed down some and after getting him cleaned up I felt as though he'd live to see another day and maybe we didn't need to go through the whole ER scene! After getting home, I checked his mouth again and his front tooth was jammed slightly out of place and I could wiggle it, so I took him into the dentist.  He checked out OK, the dentist said his tooth should tighten back up and that it may have lost some blood flow, so we can expect the tooth to discolor over the next 8 weeks.  I have already started to notice the discoloration, but at least he has the tooth!! Although the event felt dramatic, he was just fine in the end.

The following week he had another one of his intestinal bouts where he vomits for 5-10 hours and then goes back to himself.  This type of thing has happened roughly 20 times since he has been born.  He wakes up in the morning and starts throwing up and by early afternoon, he's back to eating and drinking like normal.  I have mentioned it to his pediatrician and she hasn't seemed concerned by it, rather just chalks it up to intestinal rotation....I am feeling less comfortable with it and plan to pursue a visit with an actual GI doctor.

On a more EXCITING note...Dallas's first "words" are coming out in the form of counting.  The video clip shows him during a speech session counting.  He starts at number 4.

http://youtu.be/-Ijx_urbiAY

Seizure #4

Dallas came home from school on Tuesday and was very happy.  He ate a great lunch and played for almost 2 hours before going down for a nap.  When he got up, he was very groggy and tired.  Scott put him in his highchair for dinner and he seemed pretty out of it and looked pale.  He was not interested in eating anything.  Shortly thereafter he made a high pitched squeal and then started seizing.  His eyes and face were twitching and brown stuff was coming out of his nose.  Scott took him out of his highchair and laid him on the floor on his side and shortly after the seizure was over. Scott guessed it lasted only one minute.  He was very out of it and then vomited a lot after about 20 minutes.  We got him cleaned up and headed up to Children’s as his breathing was very labored.  His heart rate was 190 when we were admitted and his temp was 101.4.  His O2 stat was 85-92, but quickly went up to 95 and pretty much stayed there.  They tested him for RSV, Pneumonia, and Influenza.  All came back negative.  Because of the color of his vomit, his stomach fluid was tested for blood, which came back positive.  Since his hemoglobin was good – they decided against an Upper GI and we never did find a source or explanation for the blood (just that his stomach was irritated, but not a concern as long as there isn’t a reoccurrence). 

On Wednesday, he had an EEG, which came back normal.  In the end, he had  a pretty low grade fever along with a double ear infection which is all it took to cause the seizure.  He is not being put on any seizure medication and wouldn’t be unless he had a seizure without a fever.  

A piece of exciting news – we had a swallow study while we were there and he PASSED, which means he can safely drink liquids without any thickening!  That being said, we are going to wean him off just to be safe throughout cold/flu season.  

Dallas was a trooper.  It's very difficult going through this as he gets older.  Every time someone would come in to run another test, he would start signing "All Done."  He also signed "shoes" very frequently, as in "get me my shoes and let's get out of here!"  He was unable to eat/drink for 24 hours and he signed "milk" so many times, it was heartbreaking.  Since they were unable to get an IV in him (2 attempts), he was very dehydrated.  They wanted to keep trying to get an IV and we said "no."   I worry for the time when having an IV is critical, because I don't recall the last time they were able to get one going on him. He is just an impossible stick.

We are back home and Dallas is wore out, but moving in the right direction.

Getting some shut-eye with dad

EEG

He Likes What He HEARS!!!

I cannot believe that I failed to mention this wonderful and very exciting accomplishment. Getting Dallas to wear and to keep his cochlear devices ON, has been a challenge.  It has been a group effort and it has not been easy, but all the work has paid off.  For a solid year, there were days I would put his cochlears back on at least 100 times.  I would pull over while driving to put them back on.  Dallas pulled them off from Day 1 and our efforts were relentless to keep them on.  Many of you remember the goofy hats he wore all the time.....my eyes water as I write this because it is so wonderful to see Dallas enjoying what the cochlears do for him; allow him to hear. :)  The proof is in the video!  See for yourself.

Yeah Dallas, and a pat on the back to all who helped in the effort to make this happen! (A little side note for those who are unfamiliar with how the devices work...once the round magnetic piece is off his head, he hears nothing.)

http://youtu.be/q2R31p9mG-c

Merry Christmas and Happy New Year!

A very busy holiday season has come to an end!  We all made it through Christmas and the New Year without getting sick, so that in itself was wonderful.  Dallas participated a little more this year in the gift opening, so that was a lot of fun to see.

His personality gets bigger by the day.  Most of which is a good thing, except for when he gets mad because we are not understanding what he wants.  I have dreaded this since he was born, knowing that communication would be our biggest challenge.  He often gets to the point where he doesn't understand enough sign to tell us what he wants and also can't get any words out.  We are working hard to decipher which behaviors are typical of any 2-year old and which are happening due to a communication gap.  It's a balancing act and together with Dallas's school team, private therapists, and intervener, we seem to be keeping our heads above water.  My goal is to limit the amount of time that Dallas spends frustrated or confused.

His mobility has stayed mostly the same, but both school and private PT are seeing improvement in core strength.  This will help him stand and walk independently someday, so we just continue to work on building towards that end goal.

Dallas has had a great first half of the school year.  He really enjoys going there and his teachers continue to send us positive feedback.

As for his new brother, he has yet to really pay any attention to him.  He has crawled over to him and placed the nuk is his mouth though!!!  So, we know that Dallas knows Dawson exists!

In action, his new thing is to spin himself around on the carpet

Grabbed this hat and put it on!  Looks good bud!

Is that a smile??!!

Loves, Loves the iPad

Proud Big Sister

Favorite Christmas Present - Rock n' Roll Mickey!

Dawson

Dallas became a big brother on November 26th.  Dawson Scott was born at 10:03pm, weighing 8lbs, 7oz, and was 22 inches long.  The delivery went smoothly and was relatively quick.  Seeing him for the first time was something I can't put into words.  There was so much anxiety and fear for the last 9 months and to finally see this healthy baby boy was such a relief.  I felt a level of exhaustion afterwards like I've never felt before.  I think between Scott and I, we asked the nurses 4 times when the hearing screening would be taking place.....he passed. :) 

Since being home, Scott, Dakota, and myself have all come down with bad colds.  Dakota passed it along to her babysitters too,  Nana and Grandpa Bauer. :(  We are so lucky that Dawson has been such a good baby so far, he just eats and sleeps.  It feels weird not have all the extras as we did with Dallas.

Dallas has not acknowledged his new brother quite yet and the more we try to show him the "baby," the more he just crawls away and goes back to doing his own thing.  Dakota on the other hand cannot leave him alone!  She is always bringing him blankets and toys and wants to help with everything.  It's been challenging because she has the worst cough of anyone, so we are trying to keep her away from Dawson!!

Overall, we are simply enjoying the new addition!!!

Those that know me well, know that I had a playlist on my iPod for "Pushing."
The song that started right as they plopped him on my chest was "Don't Stop Believin."