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

Surgery Postponed

Dallas's surgery has been rescheduled for April 2nd.  He has had a cold for 5 weeks and just cannot kick it.  They were not comfortable doing the surgery at this time.

Crawling!

I had to share this, Dallas crawled a few strides all by himself today!!!  It's a start, we are so excited!

http://youtu.be/ajXPNCn8d1U

There have been lots of little things keeping us busy with Dallas over the past few weeks.  We have been emerging from "baby" stuff, to "big boy" stuff. :)  I can't think of a better way to put it, but it feels like our planning has changed from day to day, to looking ahead a little more and deciding what things currently in our schedule are working and which are not.

We are starting PT at Children's 2x/week, beginning this week for 4 weeks total.  Dallas has been on the brink of crawling and getting himself sitting/standing for quite some time now and we decided to increase the therapy short-term and see if it will help get him over the hump.  Also on the line of PT, Dallas was fitted for ankle orthotics last week.  He will get them on in about a week or so to help stabilize his ankles.

From a developmental standpoint we have started to think more about potential play groups or learning environments that might be good for Dallas to start getting used to.  I have met with a school, "Northern Voices," located in Roseville.  This school only has kids there with a hearing loss.  Most of them have cochlear implants and some have hearing aids.  This is an expensive school and the focus is oral communication.  Dallas could start there as soon as he is walking.  They have programs ranging from infant/toddler to Kindergarten.  We are starting a 6-week trial this Friday, to get an idea if this is a school we would consider for him.  It's all about finding the right fit for Dallas and for us.  There are other options that are less focused on oral communication, but also come at no cost and provide special help for Dallas in hearing, playing, communicating, and learning social skills.  We aren't making any decisions right now, just getting a feel for the different options.

Dallas is done with feeding therapy for now.  He is chewing many things and we continue to work at home on eating/drinking skills, but he does not need to be seen in clinic!  We have decided to hold off on the VitalStim Therapy for now.  Again, this therapy is aggressive (3x/week) and would possibly help Dallas get a better swallow so that his liquids would not have to be thickened.  We have decided that we will let him get his bearings with chewing before we introduce another therapy.  This type of therapy doesn't fit into our schedule right now either.

About 3 weeks ago, Dallas had his first successful testing done in the sound booth.  Previously, he did not respond well in this environment and had no solid documentation relative to what level his hearing was at.  NOW, he is recorded as having only a mild hearing loss in his right ear (the side with the implant).  This was an incredibly exciting day and also gave the audiologist what she needed to make a mapping adjustment to his sound levels.  We can now consider the implant a "success."  These tests do not tell us that Dallas will or won't talk.  We only know that he is hearing.  What his brain does with the information, is unpredictable and only time will tell. 

Cochlear Implant #2 will take place on Monday, March 5th.  We met with the surgeon and his outlook on the success rate is 50/50.  We do not know if the auditory nerve on the left side is viable.  The MRI and CT scan describe it as "severely hypoplastic," which means "not well formed."  Why are we doing the surgery then?  Because the surgeon believes that an MRI is not something to hang your hat on.  He has done surgeries where things have been different "inside" versus on an MRI or CT scan.  We are taking a chance and hoping that Dallas can get some hearing on the left side as studies have shown that having bilateral implants makes a significant difference. 

Finally,  Scott and I have started sign language classes again and we are also having someone come into the home once a week to provide further sign language instruction.  We want to learn as much as we can and start incorporating sign into our everyday life.  Even if Dallas becomes "oral," knowing sign language will be a wonderful second language and be essential as we interact with other families in the future.




This was their idea of sitting together for a picture.