Independence Day

To say it has been a while would be quite an understatement!  Half of the year has gone by without an entry.  Several times over the last few months I will run into someone that will say, hey, I follow your blog and there hasn’t been an update in a while….so it’s then that I start thinking about it again and it’s now when I have nothing else to do, that I can write an entry and update Dallas’s followers. J

Today is the 4^th of July.  Dallas got very ill out of nowhere and we landed at St.Paul Children’s hospital for the day and will be here overnight.  He has pneumonia and was working really hard to breathe and suffering a high fever.  We got here and the best hands have been taking care of him.  After some strong steroids, several neb treatments and IV antibiotics and fluids, Dallas is doing much better just 12 hours after admission.  We hope to go home tomorrow.

Aside from this recent stay, Dallas had the best winter to date, with no hospital admissions all winter.  When I left off in December Dallas had just gone through one of his puking bouts that we thought were seizures.  This same thing happened in March and he was then put on anti-seizure medication, and then it happened again in June.  He was admitted in June while the vomiting was happening and they were able to record it on EEG and determine that the vomiting was NOT seizure related.  He now has the diagnosis of Cyclical Vomiting Syndrome.  Basically this is a fancy name for vomiting that no one can explain.  It just happens.  So, off the seizure med he went and we move on.

Dallas had an outstanding year at school and continues to knock the socks off everyone.  He is talking more and more and understanding more about life in general.  We work on communication all the time and try to keep an understanding of his needs and wants.  His school team and intervener did a beautiful job teaching him how to ask questions and begin to express feelings.   Physically Dallas is getting stronger too.  While he is still unsteady on his feet, he walks without his walker and has for some time now.  He likes to hold someone’s hand, but also likes to walk by himself too.  Dallas continues to have so many strong supports in his life between family, friends, school, and his intervener. We couldn’t be happier about where Dallas is today.

Aside from the news on the main attraction, our family is making a change.  We are moving and our house is officially SOLD one week from today.  We will be moving in with Scott’s parents while the building process continues on our new home.  We are heading to the country and building a rambler, so it’s a big change but we hope it will be the best for our family.

As for Dakota and Dawson, they are both great.  Dakota loved kindergarten and is excited for first grade at her new school.  Dawson is high demand, but full of fun.  He is an affectionate guy and loves attention.  The more action the better and he loves his big brother and big sister.

School Picture

Memorial Day 

Fishing with dad

A little art with Aunt Renee

Ice cream bribery so I could get through the store!

"You wash my butt, I'll wash yours"

Making brownies

Couch Sliding

Intervener Joan

More Adventures

After a quiet first couple of months this Fall, the last 6 weeks have been eventful.  Over MEA break, me and the kids went up to the Rainbow System store and checked out their slides.  Dallas and I went down one of them and when we got to the bottom he was sobbing.  He never settled down, so we had to leave and I just assumed he was scared and mad at me for making him go down the slide with me.  When we got home, I noticed he wasn't walking on his left leg.  The next day we headed to the DR and they x-rayed his hips as they seemed to be really sensitive to touch, etc. The x-rayed revealed nothing, so we went on. Two weeks and 2 DR visits later, they decided to x-ray his leg and found 2 fractures in his tibia, one on top and one on the bottom.  Five days later he had it casted!  He adjusted really well after the first couple of days and now walks on it and is getting around great.

Today I got a call from the school that Dallas had thrown up and must have the flu and that I needed to come and pick him up.  I thought this was weird because he had the flu just 2 weeks ago and surely he could not have the flu again.  The school called again and said they no longer believe it's the flu, its seizures.  I was already on my way to get him, but of course this phone call had my heart racing.  I got to the school and they filled me in on what had been happening.  Most of it sounded very familiar as this type of thing has happened since Dallas was 6 months old.  He begins "vomiting" and it completely knocks him out.  His lips discolor, his eyes roll back, he loses all muscle control and is completely limp.  The school also said he had an episode where his hand and eyes were twitching which was just another clue that this was seizures presenting itself in the form of vomiting.  I have been pressing this issue with his DR's for 2 years.  We have followed up with a Gastroentologist to make sure this isn't some stomach issue and we have come up empty.  So today, after 4 hours of vomiting, we were advised to administer his emergency stop seizure medication and sure enough the vomiting stopped immediately.  So the good news is that we know now that this is why he is vomiting, the bad news is that he has had a lot more seizures that we ever thought.  The plan from here is to schedule another EEG and follow-up appointment with his neurologist and then see what the plan is from there.

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 :(