It's been a while....

Hard to believe we are half way through September and into Fall weather already.  This summer was a blur for our family and we definitely are looking forward to things slowing down a bit.  The good news is that everyone has been in good health to enjoy all the craziness!  We went to the CHARGE Conference in Scottsdale, AZ at the end of July.  This experience was so good for all of us.  Dakota enjoyed being on vacation and staying in a hotel, while I swear Dallas liked being at a conference that was all about him!  Scott and I learned a lot and met so many wonderful families.  Many of the families there are connected with us via Facebook, so it was like seeing old friends versus meeting strangers.  We instantly connected with people and we felt embraced and comfortable there.  The dinner conversations were always directed towards the children with CHARGE.  It was nice to be able to talk about it without feeling like you should hold back a little because whomever your speaking to may not be interested.  Everything was fair game and of course we had a lot to talk about.  I wish I had more pictures to share from our trip, but it was honestly so busy and packed that we only got a few.  We decided after this conference that we will do our best to make it to every conference.  They are held every other year and the next one is in Chicago!

Lots of little chargers!  Dallas is not pictured here.

Chillin' in the cabana

Hanging with buddy Victoria

After the conference we went into mega planning mode for the fundraiser that we held on August 24th. It was a tremendous amount of work and it all paid off because the day itself was tons of fun.  We had a wonderful turnout and we were so overwhelmed by the generosity of the people that came, that donated, that helped, and that just plain cared.  We enjoyed sharing our experience with CHARGE and it was really heartwarming to see and feel all the love and support that came our way.  BIG thanks to everyone who made this day a total success.  I can assure you that you helped make a difference for us and for the many families who will benefit from this fundraiser.

Here is the link to the article that was in the Hastings paper advertising the fundraiser.

http://www.hastingsstargazette.com/content/hastings-family-holds-fundraiser-charge-syndrome-research

As for now, it's back to school!  Dakota started Kindergarten this year and she is loving it!  I must say I miss her telling me what to do and not to do, where to go, what to buy, etc., but the boys and I are surviving. :) Dallas started preschool and is enjoying it so far this year.  He is going 3 mornings a week.

And she's off :(

Checking his temp before the first day

Yee-haw- got the cart and my mom ALL to myself!

He's "3"

Dallas turned "3" on June 9th.  It's hard to believe he is 3 years old already.  He is starting to walk more and more, from one place to another.  He likes to see his end goal and it's fun watching him take off and try further distances.

Since the tube surgery we haven't had any issues with his ears so fingers crossed it stays that way.

We met with a neurologist last week regarding the unexplained vomiting and seizures and he couldn't come up with any conclusions as to why it all happens.  The game plan from here is to give Dallas his seizure stop medication the next time he throws up (to prove a potential theory that perhaps the vomiting is actually a seizure presenting itself differently).

I finished my ASL class and did well overall.  It was very overwhelming and difficult mainly because finding the time is challenging with 3 little kids at home.  I think I will pursue it in some fashion, but haven't made any decisions yet.  I learned a lot in a month and I am excited to learn more.

We leave next Wednesday for the CHARGE Conference in Scottsdale, AZ.  We cannot wait to meet all the families and learn from the professionals that will be there.  It's such an exciting opportunity and I am very grateful to be going.

Some pictures below of the fun summer we have been having and the link to Dallas's annual birthday video!

http://youtu.be/2331OLHHWL8

Busy and more busy!

First I will start with the GI results...there really weren't any.  They did not find anything unexpected; there were some abnormalities in structure, but nothing to help us solve his vomiting issue.  As I mentioned before, I will likely have to pursue a neuro exam, but until it happens again I have put this issue to rest.

Secondly, his walking hasn't changed much from 6 weeks ago.  He will take a few independent steps here and there, mostly at PT.  He gets very upset when you try and slip your fingers out from his grip.  He has had a cold since April 2nd, followed by a double ear infection a couple of weeks ago.  We had a really hard time getting rid of the infection and had to resort to antibiotic injections in his legs for 3 days in a row.  It was not fun as you can imagine by Day 3 he knew what was coming the minute we parked at the clinic.  The worst part is that these shots didn't even clear up the issue entirely.  He has been a very miserable kid and we can tell something just isn't right.  FINALLY, last Friday after a few conversations with others, it dawned on me that he probably has fluid in his ears (his second set of tubes fell out a while ago) and this is likely the cause of his discomfort.  We got into ENT today, and we are scheduled for tube surgery next Wednesday.  I hope this makes a difference for him.

He had his annual vision appointment last week and there were no changes which is great news.  His vision is a guess at this point since he cannot yet verbalize what he sees, but based on their assessment his vision is about 20/40-60.  Just as a side note, if your vision is 20/200, you are considered legally blind.

Both Dakota and Dallas are winding down their school years and I think we are all excited for some warm weather and maybe some relaxation. :)  Dakota starts Kindergarten next year, and Dallas will continue next year at the Deaf/Hard of Hearing Program in Burnsville.

We are very excited that this summer we will be attending our first CHARGE Conference.  Dallas will get to play and interact with many kids that also have CHARGE.  We think it will be a good experience for Dakota as well, to see other families that have children like Dallas.  There are numerous speakers and seminars that we are excited about and hope to come home with a lot of new information!  The conference is in July.

Also, this summer we are hosting a fundraiser for CHARGE Syndrome.  The fundraiser will take place on Saturday, August 24th at Dugarels in Hastings.  The purpose of this fundraiser is to raise AWARENESS about CHARGE Syndrome.  The proceeds will go to Spare Key, The CHARGE Syndrome Foundation, and The MN Deafblind Project.  All of these groups have helped us tremendously over the last 3 years and we want to give back.  More information on the fundraiser can be found at http://chargeitforcharge.eventbrite.com/.

I am starting a sign language course next week through Inver Hills Community College.  I am nervous and wondering how I will have time to study, etc.  I hope that motivation finds me as I know this is necessary for me and my family.  The course is a month long and should I LOVE it, I may pursue a degree/certificate in this field.  Dallas is signing more and more, and many of those who don't see him often are lost when they see him now.  His communication is taking off, which is exciting, but also scary as we don't want to be lost as his signing continues to advance.

Finally, a little note about the youngest member of our family....Dawson.  This kid is so happy and a little chubby!  He eats, sleeps, and smiles.  His sister adores him and loves to be right in his space.  Dallas still doesn't acknowledge him too much.  He loves to roll, jump, sit, and chat.  Thank goodness he is easy going and goes with the flow...because there is no flow around here, everyday is different!

Saying Goodnight

Dakota and Dawson

At Chucky Cheese, usually not a pizza eater and if he is, it's usually cut up
but he was screaming at me so I just handed it to him and he ate it right up!

Day 2 of shots in the legs

Sitting

What's up Doc?

Chocolate cupcake and his End of Year Picnic

Obsessed with Mickey

Wrestling

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