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



Mini Vacation

Last week Dakota took a 4 day trip to the cabin and had a revolving door of friends come to play!  Scott and I enjoyed some time with Dakota and she loved all the fun time dedicated to her.




Twins, Morgan and Brady, visiting from Gilbert, AZ



Dancing in their PJ's to "Call Me Maybe"



Evening Cruise

Swimming with Mom

Fishing with the Dads

Friend Carter Cash

Big Smiles

And let's not forget who was back home being spoiled rotten by all 4 grandparents...Dallas enjoyed lots of attention and one on one time with some of his favorite people!!

Today was Dallas's first day of "school."  He is doing the summer program in Burnsville, so he will attend 2 days per week, for 2.5 hours at a time.  We are beyond excited about this program.  The program has an emphasis on speech and language, however they also sign with him while he is there.  The most heart-warming part for me is just seeing him interact and be around other kids who also have a hearing loss.  It will be fun to watch him, not only this summer, but throughout next year as he begins to interact more with the other kids.  I was there for a good hour of his day today, just filling out paperwork and talking with staff, so I was able to keep an eye on Dallas and watch him play.  He didn't notice or seem to mind when I left and did no crying while I was gone!  Overall, I'd say for a first day he did pretty well.

He is on a maintenance antibiotic indefinitely for now to see if that helps with his health.  So far, it seems to be doing the trick.  We have had a solid week of a happy, eating, sleeping, drinking kid and it's been wonderful.  You don't really realize how much illness adds to your stress level until its gone.  Then it's like "Why am I so much happier?, "What was my problem the last few weeks?"  Well, it's because life is easier when health is good.  I think that fits for everyone!

We are contemplating a saliva-gram...this test would look at Dallas's saliva and see if he is aspirating on it.  I had brought this up to his ENT as a potential cause of the pneumonia's and he agreed to order the test, but part of me wonders if it is really necessary or not. According to his pediatrician and his pulmonologist, his chest x-rays looked more viral than bacterial. It's just difficult for me to believe that his back to back pneumonia's and then a cold, were all viral.  I can't shake the feeling that he is aspirating which is causing a bacterial infection in his lungs, which has then lead to the cough, runny nose, difficulty breathing, etc.

As for the new baby boy "D," we hit the 20 week mark this week and had our ultrasound.  We were relieved hearing that all of the organs and baby's growth looked good.  With that relief, I felt mixed emotion remembering how awful that ultrasound had gone with Dallas.  I knew that going through another pregnancy after Dallas was going to bring back feelings, I just didn't realize how hard it would be to deal with that.




Back home and still smiling after 1st day of school



News

Since the last post, there have been a few "happenings" around here.  I will start with the biggest news and that is that we are expecting at baby BOY sometime around December 2nd.  This was a decision that involved many thoughts and discussions and in the end, we decided that #3 was what we wanted for our family.  We are 15 weeks into the pregnancy, and so far things are looking good and that has been reassuring.  We will have a Level 2 ultrasound at 20 weeks and we are hopeful that all will be well with that too.

As for Dallas....he had his 2-year pictures scheduled about 2 weeks ago, so I took him to the photo shoot and let him walk in his walker without his harness (just like he is pictured above) and the photographer shot photos of him while he walked toward the camera.  Unfortunately, he lost his footing and fell face/head first on the pavement.  His nose and lips were bleeding quite a bit and his forehead was growing a goose egg.  On the drive to the ER he passed out and I was unable to wake him.  He came to as I ran him into the front doors of the ER.  All said and done, the head CT came back normal and he "walked" away with a couple cuts and bumps.

Meanwhile, he had a repeat swallow study, which showed improvement in his swallow but he did not drink enough quantity to change the thickening of his liquids.  We will redo the study in about 3 months.
He also had his annual vision check, and his eyesight remains good enough to get by without glasses.  This was good news.

This past Saturday he became very ill again, just as he did right before the last seizure.  He got a bad cough, fever, and was having a hard time breathing.  I took him to the ER around 7:30pm on Saturday night and he was admitted for viral asthma and suspected pneumonia.  We did not get his fever to break until 3am.  As usual, they could not get an IV in him, so he received antibiotic injections and everything else through his g-tube.  After a night of nebs, steroids, and antibiotics, he was coming around.  By Sunday night, we were back home and just relieved that he made it through a high fever without having a seizure.

We celebrated both Dakota (5/28) and Dallas's (6/9) birthdays this evening.  The family came to help us celebrate and Dallas did pretty well considering he wasn't feeling well.

As for the upcoming weeks, we have a few appointments scheduled to see if we can find out why Dallas keeps getting pneumonia.  There has to be an underlying problem in my opinion, so we'll see what we can get figured out!

Links to the annual birthday slideshows:

Dakota
http://youtu.be/2ivUMxYRcAg

Dallas

http://youtu.be/fA0hkd28b3w

Seizure #3

It has been just over 1 year since Dallas had his last seizure.  It is something I really never believed would happen again.

We left for the cabin on Friday night with a happy, healthy Dallas.  About 3am Saturday morning he woke up with a really bad cough.  It was so odd to have that type of cough just come out of nowhere.  He was awake for a while, but eventually fell back to sleep.  By early Saturday morning, it was clear he just wasn't feeling well and by noon we decided we better start packing up and get him home.   About 30 minutes later,  Dallas was on my lap watching Mickey Mouse when he went into a seizure.  First a high pitched squeal, then his eyes and lips twitching all over the place and body in seizure.  I was anything but calm.  When this happens you feel like something has taken your child and you don't know if/when they are coming back.

Said and done Dallas was taken by ambulance (or by "aliens" as Dakota tells the story) to a nearby hospital.  There they found he had pneumonia and an ear infection.  While I was only picking up a low fever prior to the seizure (99.5), they think the fever must have suddenly spiked, causing the seizure.

As for today, Dallas is not eating and drinking well, but does seem to be in much higher spirits.



Friday night, cruising around the cabin!



Cochlear "Hook-up" Day - Round 2

Today came up so fast and there was not near the anticipation as there was for the first round of all this.  The day was very busy and stressful, I think more so for me than Dallas.  We started the morning out with our 3rd school tour (looking at all the options for a potential program for next year).  After returning home around 10:30, I fed Dallas a little "lunch" and put him down for a nap (3 hours earlier than normal!).  This actually worked and he fell asleep for an hour.  Good boy.  We left for the U of M around 12:30.  First we had an appointment with the surgeon to make sure the incision site was healing OK, and it was.  Then we were off to the "hook-up."  It was difficult and very distracting just to keep Dallas content.  I had toys, food, iPad, his walker, you name it.....he was just hard to please.

In the end, we did not get the same neuro-responses that we did the first go around.  This is just a test that looks for responses from the brain.  Then we moved onto checking for a response from him, i.e., a head turn, to sound.  We didn't get a head turn , but he did blink his eyes at a loud knock on the door.  Overall, the appointment was disappointing...but we are nowhere near knowing whether or not there is going to be hearing from that side.  We will have several program changes over the next two weeks and then we will try some sound booth testing.  I feel that getting any sound at all from this cochlear, will be better than none.  The video that we took from todays appointment is uneventful, so I will not post.

In other news, Dallas was scheduled to have his annual ECHO (ultrasound of the heart) a couple of weeks ago.  We got to the appointment and he threw such a fit over them taking his blood pressure that is became clear he was not going to cooperate for the ECHO.  He is now having a sedated ECHO on May 4th at the U of M.  Sounds simple, but they treat it like a surgery.  You need to have a preop physical and go through the whole drill of no eating/drinking, arrive early, yadda yadda....I was not surprised by Dallas's reaction at the appointment.  He has become completely intolerant of any medical appointment.  He does well at physical and speech therapy, and that is about the end of it. 

Physically, Dallas has progressed leaps and bounds.  He is walking with his walker all over the place.  He is learning how to maneuver around objects and how to bend down and pick up toys.  I recently started bringing the walker to appointments and today it was interesting to watch him as we waited in the lobby.  He has the mobility of his walker (we put the walking wings on him, and hold on in case he decides to let go and fall on his face), so he turned the walker around and walked right back out of the lobby/waiting area and waited at the elevator doors!!!  Things are different when he's not strapped in a stroller!

Another change we made just last week was in the bathtub.  Dallas has always sat in a bath chair.  One that allows him to lean back and rest comfortably.....well, I decided that was enough of that!  He can sit well enough and should be able to sit in the bathtub independently.  Of course, it's more stressful for us because he is so unbalanced and wobbly....but he has really done great with it.  The best part is that he is working his core a little more to keep himself stable while reaching for toys, etc.  A little better than his little "lazy chair!"

Overall, he is just changing so much and making great strides all over the place.  Life is getting busier, I didn't know that was possible, but it seems we are more on the go now than we have ever been.

Post-Op Day 2

It has been a long night and day for Dallas and company (i.e. Mom and Dad!).  The repositioning of Dallas's central IV line went smoothly.  His face became increasingly weak throughout the day yesterday and by late last night, it was very swollen and hardly moving at all.  We got the surgical team to order a steroid to help with the swelling.  Because Dallas only has one kidney, we have to avoid anti-inflammatorys which is tricky in these situations when he could benefit from them.  At any rate, the steroid seems to be helping and the swelling around his eyes has come down dramatically.  This has helped some with the facial weakness.  The surgeon came by this morning and said because it is NOT total facial paralysis, the weakness should improve over the next several weeks.

He threw up 3 times over night when we tried to get some pedialyte in his stomach.  He has been up since 4am today and has only slept about 30 minutes of the entire day.  He has since kept down 3 bottles of milk, but does not have much of an appetite for anything else.  Overall, not a happy camper, but does seem to be getting some of his spunk back in the last hour.

We are hoping to be discharged late today.

Cochlear #2 - Surgery update

We have our Dallas back from surgery. :)  It has been a long day, but seems as though everything went as good as possible.  We still have not seen him wake up, so we aren't sure how he will be feeling once he comes around. The surgeon mentioned being uncomfortably close to his facial nerve, so we are hopeful that when he wakes up, his face will be functioning normally.

The surgery was the first step towards potentially hearing in his left ear.  The second step is actually activating the device, which will take place on April 25th.  This will tell us if what little of a nerve he has is enough to respond to the electrodes that were placed today.

Right now the plan is to watch and monitor Dallas's pain and progress tonight and into the day tomorrow.  No one is making any promises of him going home tomorrow, but they haven't ruled it out either.  Dallas came in with a cold today which made it difficult for him to breathe coming out of anesthesia. 

Dallas is currently being taken back down to the OR for a brief visit as someone in radiology just noticed on his chest x-ray that his central IV line was placed too far in, which can cause undue risk to his heart.  They will give him some gas and undo the stiches holding the line in place, then pull it out about an inch, and restich.  Yikes.

Last night before bed, so proud of himself that he got himself standing up!  Then his new thing is to squint his eyes when he sees the camera come out!  Anticipating the flash I suspect, smart little man.

Before Surgery

After Surgery