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."

Halloween

The Witch and Mickey Mouse

He didn't get out "Trick or Treating," but Dad paraded him up
and down the street prior to the festivities.  He loved it!

School Bound

Dallas started school the 2nd week of September and all the transitioning has gone smoothly.  A mini-van picks him up in the morning and a school bus brings him home.  He does great with both modes of transportation and has now won the hearts of his drivers and aides.

We have heard so many wonderful things from all the great people working with Dallas so far this year.  Some of my favorites:

"He is a total joy."

"We are so proud of him every single day."

"He truly has been amazing."

"Super happy and well engaged."

"Dallas is showing off and moving forward."

As you can imagine this type of feedback has really hit our hearts.  We love that he is loving the program and that the program is loving him back.  Here is a video clip that the school sent to me of Dallas "singing" along at circle time! (Just copy and paste into your browser)

 

http://youtu.be/DJQi2mbinDM

He did catch a cold the second week of school and was able to get through it on his own (meaning without a full course, full strength dose of antibiotics).  He came down with another one this week and it has affected him a bit more respiratory-wise than the one before.  We noticed very labored breathing overnight last night and into today, so I took him into the DR.  He is on a steroid and doing nebs around the clock, if he doesn't kick it in 2 days, then he will start a course of antibiotics.

Dallas entertained a couple of fellow "Charge" friends in September.  We had two families to our house and enjoyed spending some time with other parents who have a child with CHARGE.  The kids enjoyed one another and we enjoyed seeing each other's kids interact.

As for me and Baby "D," we are hanging in there.  The days get trickier as I become physically less able to do things around the house and just overall feeling more tired than usual.  We have 7 weeks to go until due date and of course there are lots of things I want to get done before then.  It'll never happen! 

Big news for Dakota this Fall, Scott taught her to ride her bike on 2 wheels!  So, Dakota and Dad have been taking as many bike rides as they can squeeze in before the snow flies.

First Day of School (Mom drove)

Checking out his "locker"

First time waiting for his ride to school

In the van, no tears!

Yes, this is exactly how Dakota went to preschool one day. 
She felt the headband really helped keep the hair out of her eyes.....

Enjoying a banana at his cousin Sage's football game

A picture with Sage! (Dakota and Carter)

Dallas's playdate, reading books! Well,his friends are reading, Dallas
is in the background, signing "All Done!"

More books

Buddy AJ



Buddies, Victoria and AJ





August

The month has come and gone just like the entire summer.  The time is really flying by.  Dallas finished the school program the first week of August and both his teachers and I were amazed at how well it went.  Dallas's teachers said they saw him make gains in just the 4 weeks he was there.  We were so pleased that he is going to school 3 days/week this fall rather 2 days as we originally planned.

His interaction with kids and social skills have taken the biggest leap this summer.  Even smaller things like bopping his head to music, and playing ball are new skills for him and we are seeing more and more of stuff like that.  His crawling has just taken off and he gets around really well....as long as he keeps his head up!  Every now and then he forgets to lift his head and ends up banging into things quite a bit.  His sitting is solid and it's becoming rarer for him to fall over while sitting.  He can almost always catch himself, or at least brace himself a bit to cushion the fall.  He loves to walk with his walker and wings and we have seen some improvement with stability, but still a long way to go in this arena.

His overall health has been outstanding.  He hasn't had so much as a runny nose or fever since late June.  The antibiotic really seems to be the key and his pediatrician said it's safe for him to be on it for 3-4 years.  As far as the saliva-gram I mentioned a couple of posts ago, for now we are not pursuing that. 

Dallas continues to eat lots of foods and his chewing skills are improving.  We still puree some of his diet, but not near as much.  Drinking has become more of an issue.  He will only drink about 6-8 ounces of thickened liquid a day.  He is supposed to be getting 24 ounces, so we have been making up for that by using his g-tube a lot more.

We went to the U of M today for sound booth testing and programming.  Until today, we have believed that the Left Cochlear Implant was not giving Dallas any hearing.  But testing today proved that he is hearing certain frequencies at 50 decibels (which is low enough to pick up speech)!  It was really exciting to see and to know that taking a chance on this implant was a good decision.  He isn't getting a full range of sound yet, but everything helps.....so this was good news.  As far as his "speech" goes, he isn't saying any words...but you can always see the wheels turning.  He did repeat what I think was "Up" while climbing the stairs this past weekend.  He is also using the signs "All done", "more", and "ball" on a consistent basis.



Grandpa, that tickles!



3 Gramma's at one time!

This is so fun, my sister is so smart setting up these chairs for me.

Big shot, in the recliner.

This looks way like way more fun when Dakota does the feeding.

Beautiful flower girl, with the beautiful bride

And the handsome groom



Dakota helping keep Dallas entertained at the DR