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?

Numbers....not his thing!

We do a lot of 'teaching' at home. All of it really. Daniel does not attend public school-he is considered 'home bound' but does have the help of school district.

Daniel gets tested just like everyone else and is doing really well, your typical 6 year old.  Typical also when it comes to showing what he likes and does not like!  Bring out anything with reading, the alphabet, letter sounds and that type of stuff and he's all for it.

Bring out numbers or try to count things with him, and he will not cooperate as much.  He knows his numbers up to 30.  But, it is very obvious to all involved that numbers are NOT his strong point. Well yesterday because it was the first of the month, we were going to be home all day I decided to make a whole day out of getting Daniel to participate with me in number activities. And Damn it, he was going to enjoy it!

 We started with making our numbers for our February Calendar.  You can find really cute things on Pinterest. You can request an invite on pinterest or let me know and I'll invite you then you can follow me!  We got them for free.  Free is good! So because I'm a bit of a freak when it comes to neatness and I know we get kind of rough with things, I decided to do the cheap mans route of laminating.  We use clear contact paper.

Now mind you this isn't a quick job, especially when I'm trying to incorporate the teaching with Daniel.  After I printed and cut out we put them in numerical order.  He did pretty good with staying on track, then "oh darn" I dropped them and they got out of order again!  Silly mom!  He wasn't buying it so we stuck them on the paper out of order!

To make sure there weren't any air bubbles, he had to step on them. 

I have Daniel pick one of the numbers with his device (AAC therapy) that is also on the bunch of numbers he is standing on. We have to stomp with first the left foot then with the right foot the same amount as the number! (might as well get some physical therapy in there too!)

Of course I can't keep them in  sheet form so we have to trim them up again.  Here is where we get some of our occupational therapy involved in the day.  Daniel cuts some of them up with his scissors. Again because of my "sensory issues" I have to trim all the others to make sure they are perfectly square and have the rounded corners (this is one of my issues - not a Daniel-ism".

We also played some other number games with these calendar squares. I put nine different squares on the table and we played a modified bingo game.  We counted by 2's, then 5's. We did some simple adding.  We did one to one games, I would count out how many red, pink, and white felt circles and he would have to match the numbers.  Also did some simple patterning. We talked about different things that were going to be happening in February.  All the while incorporating OT, PT & AAC (speech) therapy. 

Then of course we wrote in his journal. Yes, more numbers!  While we are writing, he tells me where the date goes, what the date is (on his device) and I choose to write something about what we've done in the day.  Then I read it to him, underlining the words as I read it to him, then of course we COUNT each word and he has to tell me what numbers are in the number before I write it.

Got to love the kid, he entertained me the whole day as we fought to get through the numbers! I did bribe him a bit and tell him he could play on the computer if we got through everything.

 

LINKS:

*Calendar numbers can be found here at Doodle Bugs Teaching.  There are tons of cute things on here.

*The scissors which are very cool can be found here

*The trackball (new discovery, he is just learning to use, but I love!) can be found here

*ECOpoint to control the colors and communicate here

*We also use Intellitools/Classroom Suites for his school work and many projects, to find out more about these click here

*Walker is the KidWalk

*Seating system is the Mygo

*Hand Braces are Benik

First CP support group

We've been on yahoo support groups for various things; infantile spasms, epilepsy, cp moms, homeschooling special needs, special child exchange group.  They have all helped tremendously with questions we might have along the way.  I strong suggest looking into them if you haven't already.

This weekend we attended our first (live and in person) support group.  It was arranged through our PMR head nurse at the Children's Hospital.  I'll be honest with you, if we hadn't had a doctors appointment the week before, and Debbie (the nurse) hadn't asked that I bring Daniel and his AAC device, I probably wouldn't have gone.

Why?  

Cause I've always had this thing with being in rooms with many people, I dread it.  I dread the idea of getting there on time, the whole set up.  But once I get there, I always have a good time.  So I'm glad I went.  I'm glad we went.  It got Daniel use to being around a large group of people, and he did awesome with his sensory issues (loud noises, tons of people, weird environment), and he was using his device out in public where people were asking questions of him.

So Thank you Debbie for "making" me attend and for all the information you have put together.

One of the cool things was he made it on the agenda for the meeting!  How cool is that? :)

They had some vendors there that were available to get additional information for different therapies, meeting some companies that most likely you'd need to talk to at some point in time through your journey with CP.  Then of course they opened it up for questions to ask the doctors that were there.  Very informative.  Plus it was just nice to go and meet some other people that are some where on the same road you are.  Its nice to be able to help other people avoid the giant pot hole that you know is in the road ahead of them.  Its also nice when parents of the older kids (18+) give you an idea of the different things you'll need to encounter along the way.  Things you hadn't even thought about like guardianship, social security, and other things like drivers licenses and wanting to do the things that typical teenagers will do.

So I thought I'd share a tad bit of some of the information, just in case it might help someone along the way.  Once your child is diagnosed, people start to assume that you have some medical degree and don't need things explained, so we often walk around in a bit of a fog regarding some of the terminology.

This little blurb happens to apply to Daniel.  Sometimes knowledge will stop people from being hesitant to approach Daniel and interact with him.  The spasticity he has might make him a little different on the outside, but on the inside - he is just like anyone else, he wants to play, have fun and be accepted just like you.

What is spasticity?

Spasticity is a muscle tone disorder in which some muscles are overactive (shortening and tightening) - causing stiff muscles, awkward movements, and exaggerated reflexes.  Spasticity is seen with cerebral palsy, traumatic brain injury, stroke and spinal cord injury.  Spasticity occurs when the brain or spinal cord is injured, causing nerve signals to over-stimulate muscles.

The degree of spasticity can vary from mild muscle stiffness to severe, painful and uncontrollable muscle spasms.  Spasticity can affect a child's comfort level and movement, making it difficult to do activities such as sitting, eating, standing, dressing, and walking.  Spasticity can also cause muscle contractures, which are fixed, abnormal joint positions that may lead to deformity or the inability to move the related body part.

In addition to spasticity, children and adults with brain or spinal cord injuries may also experience other neurologic (nerve-related) conditions, such as weakness and poor coordination.  These other conditions may actually be more disabling than the spasticity.  Reducing the spasticity may be helpful in these situations, but does not "cure" the condition.  In some cases, some spasticity in the legs may help with standing.

Besides, spasticity, there are other muscle tone disorders that can cause abnormal movement.  Two examples are: dystonia, which causes abnormal posturing; and choreoathetosis or writhing movements.  Management plans for these disorders may differ from management plans for spasticity.

Spasticity can be managed in many ways - ranging from simpler methods such as stretching, bracing and positioning, progressing to use of oral medications, to intramuscular injections and/or surgical procedures.  Using medications may be helpful when spasaticity happens in many parts of the body.  In children with cerebral palsy, percutaneous tendon lengthening is a common form of surgical management.  Currently, muscular injections and new surgical methods are being used to effectively improve function and mobility at various levels.

Daniel has what is called spastic quadriplegic cerebral palsy 

Typically when you think of CP, you think that there was a traumatic birth and lack of oxygen.  This is not the case with Daniel.  He had a typical birth, but during the pregnancy his brain did not develop typically and it has a malformation which in turn causes his CP.

To date so far we have done the daily medication to help with the spasticity, we have done the botox along with the alcohol block (December 2011).  We also use his leg braces, and wrist braces to help him not get contractures.  We have also done the casting (which we will be doing again in the next few months for his ankles).  We have also been in Occupational and Physical therapy for the past 6 1/2 years, multiple sessions per week.

Other things we have tried such as LOKOMAT, ABR therapy, ABM, swimming, and hippotherapy.  So if anyone wants our take on them, I would be more that happy to share, just let me know  I also generally have some contact information or will help you find it.

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Twenty Four days into 2012

Wow, can't believe it is the end of January already! Time sure flies by when you have 800 things going on around you! Of course we still have all of Daniel's things going on, but there are TONS of other things going on too, and who knows where that will lead us! At the end of December I had all these grand hopes and thoughts of what was going to happen in 2012. Well day 24, and we are already off on some of the items on the list! A few glitches have been thrown in the mix, like the strong suggestion from his PM & R doctor to do serial casting on Daniel's ankles before June rolls around. This way if the casting doesn't work well enough he will be able to get the botox (if needed) in June along with the rest of the areas. Casts? Really? It could be worse, but I remember when we did it a couple years ago and he was sooo heavy! And that was BEFORE he weighed 50+ lbs!

I am proud to say that we have kept on track with eating more "homemade" dinners.  We use to eat out A LOT, just because of the schedules, timing issues and plus obviously just the ease of it.  Well one of our goals is to start eating better, making meals, packing lunches and just saving money for the future.  

I use to have this addiction to buying those little Betty Crocker type cookbooks that are at the check out in the grocery stores.  It was really getting bad!  That was a few years ago, but I still have them all.  Over 100 different ones...I'm not kidding. I even have them numbered so I know what book to grab and get the recipe from. We pick a new recipe out of the books (Lonnie tends to stick with the same themed meals) to give us more variety, and plan a couple weeks at a time, go grocery shopping and have everything set ready to go.

 These are the ones for this week. I'm not a good cook by any means, I have a hard time boiling water sometimes. :)

 But so far, Lonnie & Daniel haven't gotten sick from anything.  Any leftovers we are using for Lonnie's lunch the next day.  Because Daniel can only eat pureed foods we are able to take most of what we eat and blend it up, or chop it fine enough so he can eat it.  Sunday was this Chicken Chili Dumplings (dumplings were my favorite!) Monday was Stuffed Peppers (above), and tonight is something Lonnie picked - Ham, pineapple pie thingy.  I'm not too sure about it but I figure if I am making Lonnie expand his tastes, that I better play along too! 

And of course, Daniel helps out too while I am cooking.  Here he is sorting his planets.  He is learning to scoop his planets onto a spoon and more them to another measuring cup.  As you can tell from the perplexed look on his face, he is working hard trying to figure out why the heck they keep rolling off the spoon!

Cyclone Daniel

The storm hits this house on a daily basis. No matter how much I try, it always ends up with toys and miscellaneous stuff spewed everywhere!

EVERYWHERE!

 Daniel continually tells me with the AAC device "Where's my money?" so we are slowly starting to work on money.  I think he's getting it because now he doesn't ask for coins, he was the bills!

 EVERYTHING comes out, we bounce from one toy to another, and throw in some educational stuff with the AAC device.  We also switch up which piece of equipment we are in.  A lot of moving from stander, to walker, to mygo chair, to a different walker, to bumbo seat.  

Variety - the spice of life!

 I won't blame everything on Daniel. I will take blame for the liter of pop that exploded in the freezer yesterday and the jello that was supposed to be thickening that I spilled all over the bottom shelf in the fridge.

So while I do those little tasks and pick up the mess....

Daniel will enjoy a movie on the computer that he has probably watched 800 times and I can say the lines for each scene!  

Brilliant Idea!

Ahhhhh....headphones!(I should have thought of this before!)

Well Hey There!

Talk about being busy for a little while!

Figure I'd give a small update on whats been going on around here for the past few months. I have been sorely lacking in keeping this blog updated. Seems I go in spurts, although I have been updating on Facebook more often than anything.  Look me up over there if you're interested.  I still lead a somewhat boring life in the FB world too! :)

So, Daniel is your typical 6 year old boy.  He is very opinionated and temperamental.  Has his good day and beware of the bad!  But for the most part, he is a happy go lucky kiddo.  He is rocking his AAC device -PRC ECO2 with ECOpoint.  We mix it up a little differently than most families I've heard of.  Some of the user area in his device has 15 cells, others have 60, and them sometimes 45.  It probably isn't recommended, but it seems to work for him.  Gives him practice getting the smaller cells, but he still can get his larger cells without the frustration.

 This has to be one of Daniel's new favorite pages.  Granted its not really working on his language stills, but boy does it give him the independence and freedom he loves.  This screen is programmed to change the channel and turn the TV on/off.  There is also a link from the "movie" cell which goes to a page with 60 cells for all of his movies.  Kid loves the power, and getting a reaction from changing channels on Dad when some sports stuff is on!  I taught him well ;)

Daniel recently had botox and an alcohol block.  We were very iffy on the procedure.  Not really the procedure itself, but they knocked him out to do it this time because of the block and also how many pokes he was getting.  For a brief moment, Daniel was a human pin cushion!  Thankfully he wasn't aware and didn't seem to have any soreness afterwards. He did milk it for most of the day and just crashed on the sofa, spitting out commands for me from his AAC!

Here is a super cute photo of Daniel playing with one of his many games he got for Christmas

And of course, he still loves to do crafty things...Here is the masterpiece of mixed colors of poster paint....we call it "Doo-doo doo with a little blue" off the paper!  See that evil look??  He thinks he's funny....not so much! ;)

Daniel also continues to be a very busy boy.  We are doing a mix of homeschooling with visits from the school district teacher.  We also have home bound services with Speech, PT, OT and adaptive gym class.  We still do his outside therapies also, so make daily trips for our outstanding Speech, OT & PT.  So to give you a quick shot of what we do weekly (does not include any doctor visits or those types of appointments)

Monday- home bound teacher, outside speech

Tuesday - home bound OT/PT (together), outside OT, outside PT

Wednesday - home bound speech & teacher (together), adaptive gym

Thursday - outside speech, outside OT, outside PT, adaptive gym

Friday - home bound teacher, home bound speech, outside speech, adaptive gym

And shoved in between all that we have homeschooling and other fun stuff (like home business I'm trying to launch)

So I'm sure you can see where we have been in the past few months!

Hope everyone out there is well and your children are flourishing and will continue in 2012.