Go Ty Go makes a move~

If you have been on the page, you've realized it hasn't been updated in quite awhile.  Due to the many demands of life, it has become much easier to do quick updates rather than a blog.  Tyler is progressing, doing great health-wise, and expecting a baby sister in January.  To view updates you can click on this link and if you are member of facebook "like" the page and you will receive notifications when new posts are created: https://www.facebook.com/gotygo1
If you aren't a member of facebook and want an update or have a specific question, you can comment on this post and I will still get an update and can answer your questions.  I'm keeping this page up for one purpose and that is for other families.  When a family receives the diagnosis of Wolf-Hirschhorn Syndrome, the first thing they do is google it.  I have become friends with families from across the US who found this blog after receiving a diagnosis.  They were able to see a smiling and happy boy versus the scary and gloom statistics and outcome they may have received from a physician.  Just know: we are here, we are happy, and we continue to cheer "Go, Ty! GO!"

Looks like he's gonna make it

Then and Now

Although different than most, our normal is ours and we have grown very much used to it.  I would venture to say it's quite different and far less scary than the future we envisioned 2 years ago when we received the diagnosis.  Several weeks ago, several family members were over.  Noah, a middle-schooler who has done several lemonade stands for Tyler and has a heart the size of Texas was discussing the syndrome with me.  Several days later, he is over again and playing with Tyler.  He has done some more research on the syndrome and is rattling off facts.  I know each of these statistics.  I think they will forever be etched in my brain because in the beginning, it's all we had.  A percentage.  A number.  Digits giving us the likelihood of our son being able to walk, dress himself, or survive.  That is where Noah stops.  "Did you know that if someone has Wolf-Hirschhorn syndrome, there is a 34% chance they will die before the age of two?" he asks. (I did.) A huge grin follows as he knows Tyler is turning two in the upcoming weeks.  "Looks like he's gonna make it!" he exclaims.  I can't help but laugh out loud at his matter of fact tone and innocence.

 

Tyler turned 2 last week.  He is doing great.  Yes, we have the occasional health scare but for the most part he is healthy and happy.  We are the lucky ones. A tradition of birthdays for WHS parents is to compile a list of accomplishments.  I think it helps quiet the scary statistics for a newly diagnosed parent of a child who will most certainly be searching the world wide web in search of a glimpse into their future. 

Tyler weighs in at a whopping 24 pounds and 12 ounces.  This is a giant compared to most of the kiddos.  He can sit unassisted.  He recently has been working on pushing to sit up and I have attached a link to a video of him working hard during a PT session.  He can follow several instructions such as: turn the page, arms up, give a kiss, and open your mouth.  He can appropriately shake his head no when asked to do something he doesn't want to do (and does this very often).  He can stand with assistance for short periods of time.  He can bear weight on all fours for long periods of time and we are working hard on crawling.  He recognizes familiar faces.  He responds and recognizes his own name.  He loves Yo Gabba Gabba.  He can sign "more".  Tyler is starting to show preferences whether it be to a tv show or toy.  It is exciting to us that cognitively he knows what we wants but unfortunately he doesn't have the skills to express those wants.   He isn't at the point where his motor skills are capable of doing most signs for sign language and the verbal skills also aren't there.  We are beginning to explore alternate methods of communication to ease the frustration we are starting to see.  He continues to amaze us and we are excited to see what the next year will bring.  Go, Ty, GO!


You Tube video of Tyler during PT

I have wanted to write about this topic on many different occasions but didn't know how I wanted to present it.  I didn't want to seem like the oversensitive special needs mom.  I often wondered if it really wasn't a big deal and I should just get over it but the bottom line is I can't.  If you're reading this, I'm assuming we are friends or that Tyler has snuck a place in your heart as he has done with many.  That is why I am asking you to join the movement to end the R-word.  I won't deny that I'm absolutely sure this word passed my lips many many times prior to Tyler and I didn't give it a second thought. However, now it has meaning.  My stomach sinks and my heart beats a little quicker everytime I hear someone use this to describe themselves when they spill a drink or do something less than stellar.  I can show you a stack of medical papers that use this word to describe my son. When you  call someone a "retard" or "retarded", you are implying that they are slow or did something stupid.  You are using it in a negative and degrading fashion.  I promise you 100% that there is nothing negative about this guy or his abilities.  He loves unconditionally and faces challenges you or I will never understand. 

 

 

 

 

I felt that if I never said anything, I wasn't speaking up for Tyler and I wasn't speaking up for my feelings.  I'll end this post with a request that you join the movement to end the R-word and sign the pledge.  Share this post and share the website.  Be a voice and spark a change.  Love to you all.



-Autumn

Sign the pledge here: http://www.r-word.org/Default.aspx
Watch this for a laugh:https://www.youtube.com/watch?v=H-DH9hydzMI

2013

Happy New Year! It's 2013. Shouldn't we be riding around in flying cars by now? I hope everyone had a fantastic holiday season.  I feel like things are just now returning to normal for us and it's halfway through January.  This past Monday we went to Riley Children's Hospital to see if the kidney surgery Tyler had done back in October worked. After some testing, we found out that it had improved the kidney reflux but not eliminated it as we had hoped.  The urologist suggested we keep him on his daily dose of antibiotics and wait a year.  There is a chance it could improve more on its own. If anytime in the year he has a breakthrough kidney infection or after the year it hasn't improved, then we will do the more invasive surgery that has a higher success rate. 

Ty and Daddy at Riley

Brian and I attended his annual kickoff event in Louisville this past weekend. For me, it always fun to get dressed up and hang out with adults for a change! I am so proud of Brian for all he has accomplished this past year.  One of his goals was to be in the top 50 partners in the whole company and he was recognized that night as he was #47 :)

Brian and his team

 

We are finishing up the last bit of the paperwork process and soon we will have a completed home study.  At that point, it could be the same day or several months before we get a call about our new baby boy! Tyler is overall in good health and we are excited what this new year will bring for Team Coffey. 

Happy New Year!!!!

 

The Great Television Turnoff

Imagine my surprise when Peyton informs me he wants an iPhone for Christmas. Me too, kid. He's 7. What the heck does he need an iPhone for? The crazy part is, it's not an outrageous request. I'm sure there are plenty of kids out there with them.  It's a sign of the times. iPhones, ipods, iPads, cell phones, DVDs, and dvr's. It got me thinking how much technology is intertwined in our daily lives.  I'm sure all of us have seen or been that family out eating at a table where everyone has their cell phones out.   When did life become so impersonal.  Brian and I spend our "quality" time each night on the couch watching our favorite shows.  What if we turned the tv off? Christmas is a time for family and memories.  That is why I came up with the idea that the 25 days of Christmas should also be 25 days tv free.  A social experiment of sorts.  Surprisingly, Brian agreed and thought it was a good idea. So, starting tomorrow, December 1st, our tv will be turned off. Wish us luck!

Home

Paperwork, paperwork, and more paperwork.  That is the name of the game right now.  The case worker is coming next week for our first home visit.  We are also working on a portfolio of our family for birth moms to view.  They encouraged us to add a video or dvd for them to get a better feel for our family so I put together a slideshow.  Here is the finished product:

Surprises for everyone!

November 17.
This post is going to start off a little random but don't worry, we'll get there, I promise.  20 months ago, our lives were completely turned upside down.  Not just the "SURPRISE, parenthood is here" kind of upside down, but "SURPRISE, your baby has a chromosome deletion and his life expectancy and abilities are questionable".  We went through the normal process of sadness and grief and sleepness nights petrified of our future.  We trudged forward and one day we looked around at our life and realized we were not only living our life but actually loving it.  Like, a pinch me is this awesome life really all mine?  I won't be able to explain in words how much Tyler has changed our lives for the better.  I want to be a better mom, wife, woman because of this kid.  There is depth and a purpose in my life.  I have gained so many relationships with awesome people.  My faith and relationship with God has reached a whole new level.  There is a closeness with my husband that brings a smile to face just typing this.  November 17.  National Adoption Day.  The day we announce and invite you along on this new journey.  Our journey to adopting another little boy who will just happen to have Downs Syndrome. We don't know his age or his name.  We just know he is out there somewhere and his home is here with us.  We have started the long and tedious paperwork/home study process.  We are excited.  SUPRPRISE! :)

Halloween Contest

This is the 2nd year in a row that wolfhirchhorn.org is holding a halloween contest to raise awareness for Tyler's syndrome.  Last year, they gave away several IPads to the winners and this year they are doing the same.  They have decided to add ITunes gift cards for the people who already have Ipads to be able to purchase some of the more expensive apps.  This site is very special to us.  When we first received Tyler's diagnosis, the internet was our main source of information.  None of the doctors we were seeing had ever heard of the syndrome let alone treat a child who had the diagnosis.  The internet can be a very scary place and much of the information we found told us Tyler would probably not walk, talk, or may not even survive past infancy.  Thank goodness we found the wolfhirchhorn.org site which had current stories and videos of real children who showed us a much brighter future than we had envisioned.  We joined this community and they embraced us.  It was an excellent resource for the many questions we have had.  Something I learned is that when you google a topic, the site that has received the most traffic will be near the top.  This contest creates thousands of new visitors to the site and also raises awareness about the syndrome.  The goal is to keep wolfhirchhorn.org as one of the first sites a new parent will visit when they have a newly diagnosed child.  That way, they may see stories that give them hope; not statistics that are gloom and doom.  I am asking that you visit the site and vote for Tyler the lemur.  Take a look around, learn something, and pass on the link to friends.  Only one vote per device so vote on your phone, laptop, work computer, etc.  They won't release the winner or number of votes until the end but they do release clues throughout the week.  I have had some people question about the names on the right side and the numbers beside them.  Those are NOT number of votes but the posts that are associated with the child.  Happy voting and Go, Ty, Go


http://wolfhirschhorn.org/2012-halloween-contest/

Tubular!

Tyler's surgery went well and he is back to his normal self.  We will find out in 3 months if the deflux injection procedure for his kidneys worked.  Until then, he is on his daily dose of amoxicillin to make sure he doesn't get any kidney infections.  The g-tube placement went well and he was just really sore for about a week.  Brian and I are relatively comfortable and learning the ins and outs of using the tube.  For instance, last night we learned that if Tyler is going #2 during a tube feeding we should clamp the tube to stop the feed and wait until he is finished. If you don't, he will vomit everything back up (which he did) resulting Ty and I both covered in puked up Pediasure (gross!).  So chalk that up to a lesson learned and onward we go.  We were excited to learn that he gained 6 ounces in the first week of having his tube in.  He is sleeping better and napping longer.  We are very pleased with the decision and confident we will continue to see the benefits of having it.  Right now, we are giving him a bottle (6 oz pedicure/1 oz water) every 4 hours and whatever portion of the bottle he doesn't drink goes directly into the g-tube.  Sometimes, this may be 4 or 5 ounces and sometimes he drinks the whole bottle-no tube needed.  It really is a load off.  We know without a doubt that he is getting enough calories, nutrition, and hydration.  I did get a call from his nephrologist about the high calcium issue that we have still not resolved or found a cause.  He has done all the testing he knows to do and referred us to a endocrinologist who has special interest in kiddos with chromosome abnormalities that have high calcium.  She wants to see us and they are working on coordinating her appt with one of the other Riley trips we already have scheduled over the next couple months.  Hopefully we can that resolved along with a good report about the kidney surgery and we will be in the clear.  Our next goal is to make it through the winter months without any hospitalizations. Go, Ty! Go!

October~

Let me just start by saying that I loooove fall.  It's my favorite season and so fitting that my mother named me Autumn.  We have another crazy month on our hands that begins with Brian flying out on Monday for some work training in Dallas.  He will fly back on Friday, we will attend a wedding on Saturday, drive to Indy on Saturday night, and fly to Miami on Sunday morning.  Brian won a contest at work so we decided to get some "us" time and make it a mini vacation.  His wonderful momma is gonna take care of Ty for us until we fly back late Wednesday night.  Thursday morning we will take Ty to Riley where he will undergo the procedure that (cross your fingers) will hopefully fix the kidney reflux and also have a g-tube (feeding) tube placed.  Finally coming to the decision to go ahead with the feeding tube is one that Brian and I have spent many hours and many prayers on.  Tyler has gone back and forth between losing weight and staying the same for some time now.  We can see a decline in his energy level and he is dehydrated most of the time.  I know thisis  a topic that people have many different views and opinions on but for us this is the right decision for Tyler at this time.  We will still be feeding as much orally as he will take but it will give us great comfort knowing that we can supplement and maintain the right hydration for him.  Keep us in your prayers for safe travels and a successful surgery and recovery.  Happy Fall Friends!

First trip to the Zoo

Although our last post was about being home.  Unfortunately, we didn't get to stay there long.  Less than 24 hours later we were back in the hospital with a fever.  They put him back on the iv antibiotics and took another culture.  They wanted to make sure the antibiotics were working so we spent another 3 days in the hospital before finally returning home on Thursday.  Tyler was in good spirits and you could tell he was happy to be home.  Saturday was a gorgeous day and we welcomed the temps in the 70's and 80's.  This summer has been so bad, I feel like we haven't gotten to do to much outdoors for fear of Tyler having a seizure because of the heat. However, this day was perfect and we decided it was time for Tyler's first trip to the zoo.  Brian and I got some excercise walking the hilly paths and Tyler just took it all in.  He loves being outdoors and it was great to get out in some fresh air. 



Ready to see the animals!



Home, James!

~The Coffey's are home~

The results are in (again).

This morning we received the results from the urine culture and it confirmed our suspicion of a kidney infection.  We were hoping to go home today but the dr. needed to do more tests to figure out the specific strain of bacteria that was in the urine.  She explained that although the antibiotic  he had been receiving would make him feel better, it probably wouldn't completely kill off the bacteria. We needed to figure out which antibiotic to use based on the bacteria.  We got some more specifics this afternoon and started the new antibiotic this evening.  They did a blood draw and his white cells are down to 11,000.  He is back to his old flirty self and we all can't wait to sleep in our own beds!

Watching the olympics.

Exhausted.

Feeling better and ready to play.

He is Olympic training~ always stretch before your workout!

The Rollercoaster

Thursday
 1:00pm-
Tyler wakes up from his nap and is fussy and hot.  I take his temperature and it's 100.  I give him some Tylenol.
2:00pm
100.6 degrees
8:30pm
After rotating Tylenol and Ibuprofen, Tyler is super fussy and he still feels hot.  I take his temp and it reads 102.8.  Brian and I give each other "the look" and head to the ER.
9:00pm
Get taken to ER room and temperature is 102.9.
They give him some medicine and an hour later, he is still over 101.  The dr. wants to get some blood, cath him for urine collection, and start an iv.  The blood and urine are collected.  Now, the hard part.  Brian tells them the problems we always have starting an iv.  They get their "go to" girl who proceeds to stick him 3 times failing to start the iv.  Blood comes back with white blood cells elevated over 20,000.  He will be spending the night.
1:00am
Taken upstairs to pediatric floor.  They will try to start the iv.  3 more sticks=fail.  His fever is up again over 102.  He is sooo hot.  All he can do is whine.
2:30am
I walk out of the bathroom and Brian is holding Tyler.  I shut the door and his eyes pop open.  He gasps and it happens.  I have been dreading this moment for 16 months.  I pray EVERY SINGLE DAY that this moment never comes.  It came.  He shifts his gaze and his body starts trembling.  I run outside and start yelling for help.  Nurses swarm in.  One is timing it with her watch and one is getting him on oxygen.  Time is going in slow motion and I am flipping out.  As I type this, tears come to my eyes while I relive the scariest moment of my life.  He lets out another gasp and starts breathing regular.  One nurse breaks the silence, " I think it's over-I timed it at 3 minutes."  His eyes flutter and his arm stays rigid.  They put him in the crib.  Things start to settle down but I can't stop crying.  One nurse explains everything that just happened the best that she could and reassured us that during the seizure his oxygen level stayed above 80 percent.  Brain loss occurs when the brain is not getting oxygen and she felt like he was breathing the whole time.
3:00am
They call in a dr. to try to start an iv.  He tries 2 more times but is unsuccessful.  They give him a shot of antibiotics.  They want to start iv antibiotics and also have immediate access to give him medication in case another seizure is to occur.
We go over options and decide on the picc line.  He will need to be sedated and a radiologist will use an x-ray to see to thread a line through his arm to the big vein that goes to the heart. This will give them the ability to do blood draws and give long term antibiotics if needed.

Friday Morning
He gets his picc line.  White blood cell count is exactly the same.  Won't eat.  Fever hovers between 101 and 102.  My biggest fear today was that we were unable to lower the fever and he was going to have another fever.  He vomits up his motrin.
Friday Evening
He drinks his pediasure but vomits it up and then does it again at 1:30am.  Still has a fever.

Saturday
Cell count is still over 20,000.  They are unsure why it isn't dropping. At it's height, the fever was 100.8 today.  Late in the day he was able to drink and hold down a total of 10 oz of pediasure.  His demeanor has changed dramatically and he is smiling.  Tonight his fever is gone.  We are hoping that the morning brings more good news and his white cells have dropped.

Brian and I are exhausted but elated that he is doing better.  It has been a very scary several days. They are thinking this was all caused by a urinary tract infection due to the kidney reflux which will most likely need surgery to fix.  We will find out for sure when the urine culture results get in tomorrow.  We will be going to Riley the 20th to meet with urology, get some testing, and discuss the recent infections.  Big thanks for all the prayers, visitors, and support.  We are ready to be home!!!!!

:0)

Thank you so much for all your prayers and words of encouragement and support.  I just received a phone call from the pediatrician about the additional tests and the results were all within normal ranges. We will also now be seeing the nephrologist that she has been consulting with when we go up to Riley for the urology appt. this month on the 20th so he can monitor Tyler from here on out.  Another example of how trusting God seems to work a lot better than worrying about things I have no control over.  Thanks again friends and Go TY GO!!!!

I got nothin' {insert catchy title here}

The glowing red numbers on the nightstand mock me with each passing minute.  I toss. I turn. I envy my husband who is snoring softly beside me.  He has mastered the art of falling asleep mere seconds after his head hits the pillow.  Unfortunately, I have almost always lacked this ability and my brain tends to shift into overdrive when it should be shutting down.  Tonight is no exception.  

Earlier this evening, I received a call from Tyler's pediatrician about some labs we had run.  Let me back up though.  Last week, we attended our first 4p- national support group conference (more on that in a later post).  We attended a session highlighting nephrology/urology and the importance of monitoring blood work due to the high level of chronic kidney disease and renal failure associated with 4p-.  Upon returning home, I discussed this with our pediatrician who suggested we go ahead and draw the labs since we were already there.  Fast forward to the phone call were she informs me that the levels we were originally looking at were within normal range.  However, his calcium level was high and raised a red flag.  "Way too high" were her exact words.  She will be consulting with another doctor and we will try to pinpoint the exact cause of the elevation.  She is off on Fridays (of course) so we won't get any more info until next week.  

Now, I should of learned my lesson after googling "Wolf-Hirschhorn Syndrome" after receiving Tyler's diagnosis.  But nooooooo: I have no patience.  I want to know.  I go into Nancy Drew mode and try to channel my inner Dr. House while researching all the possibilities for elevated calcium in the blood.  I scare the shit out of myself reading about cancer, kidney disease, and so on and so forth.  Hopefully it's nothing.  I'm praying it's nothing.  But now I am wondering.  Will it always be like this?  I feel programmed to think the worst.  Goodnight for now, I'm off to sleep (hopefully!!!)

~A

Ohhhhh-hio

Brian, Tyler, and I traveled all the way to Sunbury, Ohio for an informal gathering for the 4p- support group.  The president of the support group held a cookout at her house and their were a total of 6 families there.  It was nice to finally meet some of the "friends" that we already have due to Facebook and also to catch up with some old ones.  For me, there was a certain comfort found in this group that I don't always have in my day-to-day existence with others.  These people understand our life and our struggles.  Our conversations drifted to certain therapies that have been beneficial and comparing early intervention services by the county.  The kids played and swam while the adults laughed and had a great time.  I discovered a love for sangria and inadvertently caused the Lortz's to become addicted to Grippo's BBQ chips.  We had a blast and can't wait to see almost everyone again in July at the national 4p- support group conference that just so happens to be held in Indianapolis this year :)  To split up the trip on the way back, we stopped in Cincinatti to take Tyler to the aquarium.  He loves fish tanks so the aquarium was a perfect stop.  It was a long weekend but a great family trip.

Superman



The nurse said his doctor puts hearts on all his little patients.  <3

Tyler had the surgery to fix his tethered spinal cord and remove the cyst on the 19th.  The neurosurgeon told us it would take anywhere between 2 and 6 hours.  Fortunately, after only 2 1/2 hours we got the news that surgery was over.  The doctor told us everything went as planned.  He had to remove one bone to get to the cyst but then replaced it and glued it back in with some crazy glue or something.  We were taken to a hospital room and waited for Tyler to brought back from the recovery room.  He arrived and was crying and in and out of consciousness.  He was put on 2 different muscle relaxers to help control the muscle spasm he would have and morphine for the pain.  That first day was super tough.  While talking, Brian and I realized we were both so focused on just getting through the surgery we hadn't thought much about the post-op.  Tyler had to lie flat on his back for 48 hours and we could not pick him up.  He slept most of the first day but woke up when he would jerk from a muscle spasm or be in pain.  He didn't even open his eyes until around midnight.  That first night was horrible.  We got little sleep and Tyler was in bad shape.  Each day got better but Tyler refused to eat or drink for almost 3 days.  He was kept on fluids to keep from being dehydrated.  When they elevated his bed and we were finally able to pick him up is when he started eating.  We were in the hospital until Monday and sent home with muscle relaxer and pain medicine.  He is off the pain meds and we go back for a check-up with the surgeon this week.  We are happy to report that he only lost 1 ounce through this whole ordeal.  I have no idea how but we are super excited and he is now eating like a champ.  Tyler has once again proved he is Superman and we are so happy to have him home.

Care package from our awesome small group :)

All swollen up from laying face down during the surgery

Getting better.

Watching Backyardigans on the IPAD.....lifesaver.

Superman is home.

Ty's Comedy Show

So I am running a little behind my posts but we made it through the surgery and I'm finished with school...FINALLY.  Will post about the surgery in a bit but wanted to update about the fundraiser in case you weren't able to attend.  The night could not have been more perfect! We were surrounded by our friends and family.  We were supported by local businesses, strangers, and our community.  Brian and I were talking about the night on our way to Louisville for Ty's surgery.  It was in my top 5 fave nights EVER.  We were able to just have a good time and laugh our butts off.  For that night, there was no worries and no stress.  We could just BE.  The comedians were hilarious and the outpouring of love and support filled my heart to the brim.  The local news even showed up to do a story on the event.
http://tristatehomepage.com/fulltext/?nxd_id=503032
 Our wedding photographer, Matt Vickers even volunteered to shoot the event.  Here is the link to see the pics http://vickersphoto.zenfolio.com/coffey_fundraiser


As I've said before, the night was perfect and so much fun.  Thanks to everyone who came or donated.  Here is a list of local businesses who in one way or another made this event happen.  Please give them your business because they rock :)

Ri-Ra Irish Pub
Matt Vickers Photography
Dawn Waddle Mary Kay Consultant
Kahiki Tan
Stephani Gonzalez at Posh International Hair Studio
Serenity Custom Finishes
Julie Hope Photography
Heather Hoffman at Shear Talent
Kanpai
Red Lobster
Big Splash Adventure
Hacienda
Valerie Cole Mary Kay Consultant
The Granola Jar Cafe and Bakery
Spankey's Una Pizza

Also, this event REALLY couldn't have happened without the funny men themselves.  People are still telling me what a good time they had and how good these guys were.  Get ahold of them for your next event!

Clint Hall
Gavin Eddings
Big John Richardson

Party Animal

Tyler turned one last week and we had a jungle themed party to celebrate.  Here are a few of my favorite pics from the day: