2014!

Daniel continues to amaze me with how awesome he is.  Its been quite a while since we've used this blog, things have mainly been updated on Facebook.  I guess times change.  So I figured I'd do a quick update here.

January 2014 Daniel was introduced to a group of people from The Chive.  Actually the Michigan Chive chapter have basically adopted Daniel!  They were able to raise money to help us get Daniel an adaptive wheelchair van.

We've had a busy summer!  He has participated in a few runs with MyTeam Triumph in West Michigan.  We even did two triathlons!  Not too shabby eh?

October holds another exciting part of Daniel's journey.  He will be getting a therapy/service dog. His name is Kalani and we are super excited to have him join our family and help out Daniel in whatever ways he can.

Daniel also started 3rd grade, but had to be pulled out of school for an upcoming surgery to his right hip.  He had the left hip done in 2012 and it was a terribly rough 6 months.  We are hoping because he is older that this one won't be as horrendous.  Basically they will be rebuilding his pelvic socket and cutting the femur and rotating it and fixing it into the new socket that is built.  Currently his hip is out of socket but he does not appear to be in any pain.  His surgery is scheduled for January 2015, but is now home schooled to insure he does not get sick between now and January.  He has a poor immune system and if someone sneezed around the block - he usually catches it!

So that is where we are currently!

Grand Rapids Bridge Run

Mobility Awareness Month 2013

As many of you know, Daniel has had a rough time of things the past 6 or so months. A 7 year old kid should not have to go through many of these things.

Yes, there are children out there who go through much worse than Daniel. I know this, and I feel their pain and their parents also. It is so sad to watch a child who normally has a smile that can make a sad person happy in an instant, to being THAT sad person.  

After Daniel's invasive hip surgery in September 2012 (you can see previous posts) until about February 2013, Daniel was not that smiley happy kid. He wasn't "my Daniel" anymore. He cried a lot,he screamed when we moved him and we had to move him so he wouldn't get pressure sores. He didn't use his communication device and to make matters worse, he stopped eating the way he use to.

I remember sitting on the floor in our back room sobbing. Not just crying but sobbing because Daniel was "gone" in a way that I knew him. I was blaming myself because I chose to have him get this surgery. Bring on the mommy guilt! I thought this would make his quality of life better, and at the time I thought I had made the wrong decision for him. I sobbed and sobbed to the point where my husband was at a loss for what to say. 

In January we told his surgeon after repeated phone calls and appointments that this is just not working, we wanted the hardware that was left in Daniel's hip OUT. This hardware is normally left in for 1-2 years and here we were after 4 months of hell telling him to take it out. This isn't how Daniel is going to be, it can't be. So, many x-rays later and the bones that were cut in half and repositioned had healed we scheduled his surgery. Unfortunately because of the past months of pain with daily pain meds that could knock out a horse Daniel had lost 15 lbs. Most of us would rejoice with losing 15 lbs. But not when your 7 and you only started out at 55 lbs!

So we also had to schedule him to get a feeding tube. Thankfully both surgeons agreed to do it at the same time and he only had to be put out one time. That was on February 12. On February 13th while still in the hospital recovering, Daniel started to move his left leg again, which he hadn't done is months. We started him on his feeding tube to get his nutrition in without the stress of using a syringe to drip sips of liquid in his mouth. 

Skip forward to April, 8 weeks post surgery and Daniel is back!! Laughing and lighting up the room. He is gaining weight. He's back up to 50 lbs, using his device more and more each day and brightening up my days! While the hip surgery I would not want anyone to go through, I'm glad we did. It was hell. I won't tell you anything different than that and it sucked for everyone involved. Physically and mentally. But he's back to our typical Daniel and I love him to pieces! 

Now, if you're a Facebook friend your probably sick of hearing this (SORRY!) - if your not and wanna be, let me know!

We have Daniel entered into a contest for Mobility Awareness Month which is in May. Please check out their website and read about their contest.

You can read Daniel's story here and please vote if it moves you too! Please share with your friends and family. You can vote once per IP address PER DAY (work, home, cell are generally all different HINT HINT!). There is a mobility question you can answer also to have each vote count as TWO!!!

We even made it onto our local FOX2 News and interviewed by Andrea Isom  you can watch the video here.

The contest runs until May 10th. So go vote daily!!!  Please and thank you.
If you have any questions please email me or leave a comment and I will respond.

Thanks and hope all of you are doing as well as we are!

My Theories

Here are my possibly theories on why Daniel will not drink from a bottle since his hip surgery.

I mean I should know right? 

Since I've been medically trained!  HA HA  NOT!

• His throat is irritated from having the breathing tube shoved down his throat? Maybe it hit/pinched a nerve somewhere in the back of his throat?
• He normally has a lot of spasticity in his body.  Because he is casted on his legs, his arms are more relaxed, he is not drooling....perhaps he used his tone to help him suck prior to surgery?
• He had some possible seizures after surgery and perhaps he lost his ability to suck? (Everything else seems fine)
• He had a very set way of sitting on my lap and drinking his bottle, now he cannot get into the right position so he is just refusing to eat?
• The formula tastes different now because of the anesthesia? (suggest by another mom)
•  He is just being a stubborn little boy and likes to stress me out? :)

He doesn't fit to well.

Out for a walk

practicing sitting up!

This honey bear and a gummy bear video gets him to drink.

At our new desk in the classroom!

Let me know what your theories are!

Two Weeks Post Hip Surgery

Ever do something for your child and midway through you have that thought of "Oh crap, maybe we did the wrong thing?" 

Yea? That was me the first week after Daniel's surgery.

FIRST.. 

MAJOR .. 

SURGERY. 

I was scared to death. I kept it together until they took him to the actually surgery room and then I felt like I was going to barf. I cried. I'm big enough to admit that I didn't have my big girl panties on that morning. 

Yes, Daniel has had other procedures before but nothing where he has a tube shoved down his throat, or his hip sawed in half, where he has been knocked out for 3+ hours and came out in a SPICA cast from his chest down to both toes. 

We had a rough week after the surgery. The first couple of days Daniel was on Valium and Morphine every few hours. He was also on some medication to stop vomiting. 

CURRENT ISSUES AFTER SURGERY:

Feeding

If you know Daniel, you also know he does not have a g-tube and gets his nourishment from formula which he still drinks from a bottle. We have been able to keep him at a good weight without having to go the g-tube route. He is a stubborn, finicky eater. He likes to try everything but because of the weak muscles in his face he isn't able to chew up foods. If he is not sitting on my lap and in the right environment without distractions he will not drink his bottle. Its always been this way. 

Go ahead, say it "If he is hungry enough he'll eventually drink."

That is not the case with Daniel. He won't. Since his surgery, he hasn't. 

He will NOT drink from the bottle anymore. 

This poses a huge problem because he also cannot drink from a cup without losing a lot of liquid in the process. He also cannot suck from a straw. So for the past two weeks, I've been giving him Gatorade and any liquids he'll take from a syringe. Keeping track of how many ounces go in and how much comes out.

I can't figure it out.  I don't know why he has stopped.  Prior to surgery he'd drink an 8 -16 oz. bottle in 15 minutes.  Now, it takes all day to make sure he gets in at least  24 oz. of fluids.  I'm not kidding, my goal is an ounce an hour, 24 hrs. a day.  I've read that some kiddos appetites aren't so great after surgery, I've also read where some kids that have g-tube surgery stop taking everything by mouth.  But he had HIP SURGERY!  And we are sadly on our way if he doesn't start drinking soon, to another surgery for a feeding tube.  He is losing weight, which they say is normal for after hip surgery, we are keeping him hydrated, but eventually we will have to make the move for surgery.  Anyone else have any experience with kids refusing to eat?  Occasionally I'll get a few little bites of mashed potatoes, hummus, or creamed spinach into him, but not enough to make a difference.

Skin Breakdown

Daniel has super sensitive skin.  His record shows he has a tape allergy.  Well apparently while in surgery someone accidentally used the wrong stuff and perhaps tried to remove it with solution. We don't know for sure, because no one told us, but you can see the marks from tape, perhaps a tube taped in the spot to hold it.  So he has a "chemical type burn" on his ear.  After we got home from the hospital it blistered and got very swollen so a trip to our awesome pediatrician (she offered to come to the house!)  So now we are also on antibiotics and Silvadene cream for the burn.  

We also had to put moleskin around the top of his cast because it was rubbing on his back and sides causing more irritations.  Different ointment on those.  

Then we had our late night trip to ER because of a golf ball size knot on the base of his head/neck.  Five hours later and a CT scan...they say it was just an ingrown hair that festered and got swollen because he is laying on the back of his head more because of the casts.

I am happy to say that besides being tiring more quickly, being in a cast and not really eating well, Daniel is smiling and continuing to work on on his school work and upper body therapy.  

I am not regretting the surgery as much, but still have my moments! That could be because we are not able to travel, so we don't have a lot of occupy my mind.  We are starting back to a semi-normal schedule with school, home therapies and nurse visits. 

Daniel doesn't fit comfortably in the car and its a two man job to get him in, not something I can do on my own so no field trips!

Just want to say thank you to everyone who sent him Get Well cards, games, gifts and well wishes.  They are greatly appreciated. 

So anyone who has any ideas on getting him interested in eating again....please send them my way.

Thank you in advance.

 

Remember us?

wow!  talk about taking some time off eh?  Times are a changin'!  I use to blog all the time and well obviously as you can see from when the last post was, that isn't the case anymore.  I guess we just kind of got caught up in life and have been tootin' along trying to stay on track.  Making quick updates on Daniel's progress on facebook.  Truthfully I kind of miss keeping track here.

So while Daniel is practicing his sight words on his iPad, I figured I'd do some quick catching up.  Young Daniel played some baseball this summer, has been going to riding therapy at O.A.T.S., riding his new bike and a little swimming, among his standard therapies.

Riding his new bike

swimming with sister Brittany

Swimming with sister Victoria

At the zoo with his sister Caitlin for her birthday

Lynn from O.A.T.S and Adam who volunteered all summer to help Daniel ride

Fun times riding the horse despite the 100 degree weather!

Adam and Daniel

Checking out the bike

Sitting up tall on Rio!

more swimming and smiles

Celebrating a good hit with sister Brittany

His sisters volunteered during the summer to help Daniel and the other kiddos with Miracle League of Michigan

Joke Night 2012

 He also came out of his shell a little bit and attended an "AAC Joke night".  A bunch of AAC users met at a local ice cream shop and sat around eating ice cream and telling jokes with their devices.  It was  a every fun event that his SLP helped to organize. He rocked it too!  He is doing really well with his device and is very quick with finding icons.  He even tried his hand (without permission) on programming!

In June we unexpectedly found out that Daniel's left hip is 80-90% out of the socket and will require some hip surgery.  Of course this is after much deliberation but it is scheduled for September 25th.  Unless of course when we go in for our final consult on the 10th and there is a difference with the x-rays!  Miracles have been known to happen right?

Daniel is still considered "home bound" for school this year, his IEP is this Friday. Ugh! His upcoming surgery, poor immune system and issues with seizures, his doctor thinks it best he does his schooling at home.  For many reasons besides these I tend to agree. With the surgery he will be in a Spica cast for 6-10 weeks.  In case you aren't familiar with what this is; they begin at the chest and may extend down to cover one leg, both legs, or the leg on one side and down to the hip or knee of the other side. 

Sounds comfortable no?

We are also weaning Daniel off of some of his seizure medication.  This is good and bad.  Good because I hate him being on so many medications, bad because its the medication that originally stopped his seizures and keeps them at bay.  The long term side effects for being on Vigabatrin is loss of peripheral vision.  His vision is one of his strong senses so we would hate to have anything happen.  So currently this is his cocktail of choice to keep everything in check.

Vigabatrin, Trileptol to keep seizures controlled. Zanaflex to relieve some of the spasticity in his muscles. Previcid for his reflux. Robinul to help with the drooling caused by paralysis/weak muscles in his face and throat.  This helps to decrease amount of saliva so he does not aspirate (choke). 
Klonopin wafers for emergency of stopping seizures that last longer than 3 minutes.

My not so little guy at his 7 yr check up came in at a whopping 55 
lbs and stands  4'2" tall. 

All this being said, he is your typical little boy; thinks farting and burping are hilarious, likes to play with cars, watch tv and be obnoxious!  Same as every other kid.

 

Electronics

Daniel loves anything to do with computers, televisions, computers, electronics, computers, portable DVD player, and his Casio keyboard. You get the idea I'm sure.

He loves turning things on and off. His way of controlling things.

A while back I believe I told you that we programmed a page on his ECO to change the channels for the TV. Its fun times when Daniel wants to watch a different program than what daddy does. So they fight and go back and forth for control. If he doesn't win, he'll just turn the TV off , look at you with a satisfied grin on his face like "Well, if I'm not watching what I want....neither are you!"

So when we recent acquired the PowerLink 3, you can imagine our excitement.  My mind went nuts thinking of all the things he could do that he'd find fun.

So we've had it for about a week and here are some of the things he has done so far.

We've made vanilla ice cream with crushed Oreo ice cream.  YUMMY

He has used the little blender we had so much that he blew it out and we had to go get a new one!

He made my breadcrumbs that were used in dinner the other night.

Mixed up his own dinner. 

Oh and who doesn't like some dinner time music from the radio?! Don't get into a song cause he'll most likely turn it off - or that could be because we're singing?  And for those hot flashes that I get, Daniel is so kind to turn on the fan! ;) 

I found an art project on Pinterest (love that site!) and we modified it so Daniel could do most of it.  We glued our "yucky" crayons and used the PowerLink with a single switch to turn on and off  a hairdryer and melt the crayons.  Big time fun!!  Besides electronics, his next favorite thing is anything to do with arts  and crafts! So you can imagine the excitement

After we glued the crayons to the top and I finally figured out a way to mount the hair dryer, we had success.  If anyone decides to do this, I strongly suggest that you put the board inside a box as there is a lot of splattering off the picture.

 Finished piece of art.  Beautiful don't you think?