FINALLY....

His appetite is beginning to return!! Knock on wood!

We are going from 6 days of attempting to get at least 24 ounces into his with a medicine syringe. Yes - he is still drinking from a bottle, this is the only way he gets his nutrition, which will be why there will be a post later titled :

Feeding Tubes - The decision

Because of his dysphagia which he has as part of the many diagnosis stemming from the brain malformation, swallowing/eating isn't a strong point of Daniel's.
So when he gets sick (more frequently lately) he stops eating, and we resort to this. Can you guess how many times you need to refill this bad boy?!?

Because Daniel isn't able to tell us WHY he isn't eating...ear hurting, tummy ache, whatever...its a guessing game. This time I think it was a combo of the above plus the antibiotic he was on. Cleared up the ear infection real well, but left him to fight off the sinus drainage and the tummy aches. Well, at least that is my uneducated guess.

Today is our second day off the antibiotic, and we are seeing some good changes.
Appetite increasing, increasing peeing (TMI I'm sure but its important!), and more activity and smiles! Very excited to report that in one sitting of attempting to eat food he ATE 1 whole avocado and 1/2 cup of pureed mac & cheese!!
Estimated total calorie intake for today: 1575
Pretty good from the days before of pedialyte!
Here's hoping for an even better day tomorrow!!

Still Sick...

Unfortunately Daniel is still sick. One day he seems to be getting better and then the next we're starting all over again. The stress sucks, him not eating sucks even more, and I hate sitting here watching him get weak from being sick, and then I hate the thought of him at the hospital too.


Excuse the camera (for those photographers that come here) our camera sucks, or the photographer...one or the other!

Christmas morning

Sword fighting with wrapping paper tubes with Tori (a few days before Christmas)

Daniel laying on the body pillow he made for daddy...stealing dads' spot!

Horribly blurry but I like the look on his face!

Check out the look he's giving Tori, kind of like
"Don't you dare to anything right now, I'm opening MY present!"

The tree in the dark (obviously)

Serenity

God, grant me the serenity

To accept the things I cannot change;

The courage to change the things that I can;

And the wisdom to know the difference.

--Reinhold Niebuhr

I'm going to start saying this every morning before I get out of bed, and hope it helps. My mom always use to say it to me when I was having issues. I miss hearing her tell me. I wonder if she'd ever heard this one?

God grant me the senility to forget the people I never liked anyway,

the good fortune to run into the ones I do,

and the eyesight to tell the difference.

- Author unknown

My dad use to be a real smart-a$$, so I'm sure she probably did! and I'm sure she tsk-tsk'ed him about it too! :)


Yea- (tee hee hee) no really seriously.. I'm kidding Mom! I'm going to start saying it the right way.

Cheer and Merriment....

Well not from this blog! LOL
No seriously, while I am not in the festive of moods and things are a mess around here. I do wish everyone out there a wonderful holiday and I hope you all have a wonderful time. Be careful and be merry, no matter what religion/holiday you celebrate.

uuuum....SANTA?!?!

We had a big family get together this weekend.
Rented a hall, all the families get together.
The kids play games and do crafts
Santa comes and calls each child up to get a gift.
All of this is difficult for a child with sensory issues (and sometimes his Dad too!)
Daniel is known as the social butterfly, but it takes him a while to get use to
new situations. The loud noises, all the people kind of freak him out.
So I was very happy when cousin Caleb (again to the rescue) and sister Caitlin helped relax Daniel while doing the decorating of the cookie
Also for Victoria who quickly and expertly placed Daniel on Santa's lap for the 4.5 seconds for the photo op before the potential freak out (which never came thank goodness!)
Santa got Daniel an awesome gift (which if you have a SNK is a great gift which requires minimal large motor skills)

Unfortunately NONE of the pictures came out because the camera was set to the wrong setting, and then the battery died after the 4th picture. But I'm sure you get the idea of how it went...thanks to photos from a few other people.

Lady at Desk .... You Rock!

Today we went to sign in at the lobby like we do all the time.
The lady at the desk was new and when she saw Daniel the conversation went something like this:

Daniel: Hi (said as "i")
Lady: Well Hi!
Daniel: Are you? (said 're ooo)
Lady: I'm good, how are you honey?!
Daniel had the biggest smile.

First - the cute lady said hi to him
Second - the lady understood him
Third - the lady acknowledged him and smiled

See people....something so simple and you made that little boys day (and his moms' too!)

Note: Daniel is just starting to say "are you?" after he says "hi" which are both huge things!
of course the "are you" is suppose to be "how are you?" but pretty darn good for a kid that is never suppose to talk! AND all done without any prompting.

Daniel you ROCK!

Because

Because its my blog and I can....and I think everyone should experience a little bit of this cuteness every day!

The Reality Of It All

Here is an little bit of a post from a long time ago...but still feel that it explains things:


It is said that parents attach to children through core-level dreams, fantasies, illusions, and projections into the future.
Disability dashes these cherished dreams.
The impairment, not the child, irreversibly spoils a parent's fundamental, heart-felt yearning.
Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions.
Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being.
Recovering from such a loss depends on one's ability to separate from the lost dream, and to generate new, more attainable, dreams.

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task.
They must raise the child they have, while letting go of the child they dreamed of.
They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams.
To do all this, the parent must experience the process of grieving.

Although its been 4 years, I still think I am in the process of grieving, trying to do this, to learn to survive this. One would think I'd be past this stage, and sometimes I am, but I often revisit it. As much as I'd like to be done with it, there are things that just make the whole reality check thing come into play.

I read from another parents blog once and it stuck with me -"We some times have to take the opportunity to step out of the situation and to be by ourselves, and then just lose your emotions for a few minutes. Sometimes the way broken parents of broken children get through it all is to step into the dark and lose their minds, to cry hard,and just stop being the brave little soldier for a while".

So true. Sometimes the reality of the situation is all consuming. It doesn't mean you don't love your child, because if you are any type of parent at all you can't help but love them. You want to protect them with ever ounce of your being. That is one of the struggles, one of those things that creep into your brain at night and keeps you awake at night. Will I be able to protect my child? Will I be able to provide for my child in the way that he needs? Who is going to care for my child when I'm gone? These are just a few of the mind games that go on at night.

Then once you're done with the struggle of fighting yourself and your own demons, you need to address the reality that the stress and emotions of having a SNK makes marriage difficult.

A large number of parents with a child that has a disability end up in divorce. Some people think "oh gosh, we're strong that would never happen to us." Well guess what....to even the best, it sometimes happens. The divorce rate among special needs parents is almost twice that of parents without a special needs children.

Then there are the fights. The fights with schools, the insurance companies, the doctors, therapist, the list is endless. Sometimes you even have to face challenges from your spouse, families and friends about what the diagnosis is or what it means, how to pursue the correct treatment and environment for your special needs child. Sometimes sharing that you have a SNK, friends tend to become "to busy" or do not understand what you're going through and that friendship seems to fade away. (to that I say listen to this song)

The stress of raising a SNK begins to take a toll on a marriage. You end up feeling alone. Its difficult because each parent grieves/deals with issues in their own way.
I get consumed with researching the hell out of everything trying to figure out the future (wishing for a crystal ball), while my husband just would rather not know all the scary details, and is more of a day to day issues guy, accepting thing. He's famous for saying "It is what it is"

Don't get me wrong, neither of us is wrong for the way we go about things, but it adds stress and resentment on the relationship. We are both very committed to Daniel, we both love him with all our heart. BUT we often disagree on issues, and how to go about them. But the end result we both want, we just have different ways to get there. I am more aggressive, he is more passive.

So sometimes in marriages when these types of things arise, it is one parent that ends up taking care of the day to day care of the child, the fights with whoever , while the other parent is making the money to support the family. Sometimes this cause the resentment of 'being stuck'/'not having adult contact', or the parent that is working feels resentment because "all the pressure is on them".

Its a difficult time needless to say. Here are a few points I found on another article; although some are hard to do when you're in the middle of the argument.

• Use empathy with your partner

• Reflect back what you understand
• Avoid dangerous comments
• Compromise with each other
• Be flexible
• Keep arguments from escalating
• Fight fairly
• Make repair gestures

There is also this link to a post a few years back: HERE
I am sure that most of it still applies.

Sometimes all you need to do.....it go into a room and have a good cry.
And take some time away to just regroup and get that smile back on your face.

Now all that being said, don't think that either of the parents regrets the child or resents the child. Its not the child that they resent, its the disability that sucks.

Here is another link for ways to try to save the marriage.

Just Because

Here is what we look like today....

Here is what we looked like exactly a year ago....
Still cuter than all get out in our stripped shirts!! I don't think he has aged much...but he is definitely heavier and longer!



We were asked the other day how Daniel tells us 'yes' and 'no'.

My response....watch his face...NO

YES!

Did you catch that? I am still trying to work on the head shaking but I so much like the smiles and pout-pout lip!!

That's All Folks!.......

Holidays Stress Me Out

I don't think I've ever really gotten into the holidays much as an adult.
Its not that I don't want to spend time with the family and stuff.
Its all the gifting and crap that goes along with it.
I just think it is way to "what big thing did I get", and spending way too much money.

No matter how much you get it always seems like its never enough or as good as what someone else got their child.

I am more of a simple person I think. I grew up in a large family and you got a couple things and life was good. I don't remember Christmas days too much as a child, but I also don't remember being disappointed either. When we became a certain age and were out of the house, then you graduated onto getting the homemade candy and cakes my mom would make only at the holidays. Each adult child got a slab of toffee candy, a coffee cake and a caramel candy roll. Life was good. If you were a grandchild, you got a handmade Christmas ornament made by grandma and some dollar amount. With a family the size of mine, the holiday wasn't so much about the gifts, but the time spent with people that aren't going to be around forever.

Well since my mom passed away, I have been attempting to make the homemade toffee (never to be as good as hers!) for my family.
So instead of spending time at the stores, I like the simple, hand made stuff.

Here are a couple of the cool things I just love and wish other people would get into also, and realizing so much more went into it then running to a store and grabbing something off the shelf! My house is filled with little knick-knack things that were made by someone or put together with thought.

What happened to the holidays meaning spending time with family and recognizing what the holiday meant? Now a days, its more about how much farther in debt you can get. I hope to pass along what my mom did to my children.

For the jewelery wearing girl in the house
(excuse the dry scaly hand!)

for the little guy whose afraid of monsters - the night light that keeps them away

For the winter season - Mr. Snowman

For that baby that just joined the family

For the big girl who still likes to be a little girl and wear fun hair clips!

Do you have anything special that your family does? A tradition that you hope continues to get carried on that doesn't buy into the commercialization of the holiday?

Relocating?

Ok so I need all of the people who read this blog (hopefully you're still coming to visit) that have a special needs child to comment on this post.

If I could possibly move to whatever area in the US

Here are the questions:

What is the best area to move to for a special needs child?
Which state programs are better?
Which schools are better, hospitals/doctors and therapist?
(If you can give me the program names so I can inquire)
What is the cost of living like, the job market?

Even if you have never posted a comment before, step outside the box, and speak up....I need voices here...

You can post without having a blog on your own, you can keep your name to yourself, just give me your opinion.

This is all of course just hypothetical right now, but if for some reason in the future I need to know...plus I'd like to know if people are still coming to visit here! ;)

And IF you have done this yourself, what was the experience like?

Thank you!

Doctors Appointments

From early this week I said we had a busy week. This is how is started off- I need someone who works in the medical field to explain to me, WHY does it take so frickin' long for the doctor to come into the room?!?! This week we had an appointment with our wonderful neurologist (seriously I love him), but instead of going into the hospital we visited him at one of his off site locations.
When I scheduled the appointment I got the FIRST appointment of the day. Thinking I'd be smart and we'd be outta there quicker than you can blink your eye.

Nope. Didn't happen. As luck would have it, I was unaware that they schedule you like cattle on the off site location and there were about 10 other people scheduled for the same FIRST appointment I had!. WTF?!?!Well because I like this doctor so much I didn't put up much of a hassle. But for future reference and note to self:
BRING the frickin' wheelchair...even if you think its too cramped or crowded or you think it will be easier...it will NOT be. BRING THE CHAIR.

Holding a 4 yr old on your lap who does not want to be on your lap, in an small over crowded waiting room with the heat blasting at lets just guess a warm tropical 101 degrees...makes for a very uncomfortable wait! Then he heat gets even better when they do finally call your name and the then move you to the "hot box" as I like to call it. The room where you get to sit and wait yet again but with the door closed so you have your own personal sauna!

Anyhow, onto the actual appointment. Seems because I'm not all that smart when it comes to reading the medical terminology since Daniel's diagnosis of Congential Bilateral Perisylvian Polymicrogyria, every report I've attempted to read and question, we've always come back to the easiest answer: Well he has a malformed brain and its CBPP. So I've always done my research on just that.

Well guess what I learned (and yes I feel like an ass) Daniel also has another malformation that I was unaware of but it is secondary so I guess why bother pointing it out or explaining it right, there is no changing it.

So lets add to the diagnosis: Cortical Dysplasia
So is the epilepsy from the cortical dysplasia or the CBPP? or does it really matter at this point?

Then another little tidbit of information I got from this appointment by the resident that comes in with the doctor. That a high percentage of children with CBPP (Now mind you CBPP is very, very rare and when Daniel was diagnosed there were only about 60 known cases in the US). Anyways as I was saying a high percentage of those children end up with the diagnosis of Autism.

Now I don't know squat about Autism expect that it is a broad spectrum and that generally the kids aren't sociable, and there are different levels of severity just like cerebral palsy.
Thats the extent that I know of it. But still I was like GREAT, another thing to add to the endless list. Well he followed up the study with he strongly believes Daniel does not fit into that category because he is indeed very social, outgoing and has awesome eye contact. But regardless of that....you know what two things I'm research now right?!?! Just to make sure?!?!?

Even with all that, it was a nice visit and I always leave there feeling uplifted. He always goes on and on about how well Daniel is doing. How high functioning he is comparatively speaking of other children he sees with PMG.

He said they recently did a study of 8 children with the same brain malformation that Daniel has. All 8 children had MRI's to see if a certain area of the brain was developed (this arc for speech).
Daniel was part of the study. Of the 8 children five of them had none of the arc present in the brain. The other three had particle or full arc. Daniel having had the least of the three with arc.
He said Daniel is the only one with the most "talk/babble", he was considered the highest functioning of all 8 children cognitively and with speech.

This is a good thing. I am happy with that.....

BUT this cerebral palsy crap sucks!
so I always ask....What else can I do to help him with the CP?
I dont know why I ask because I always get the same answer....continue doing the therapies, Daniel has the desire you can see that, and he wants to walk, we just have to get his upper body talking to his lower body!

Oh btw-totally off subject but I'd like to win :)


April Showers Blog Design is having a HUGE giveaway and celebrating her OPEN waiting list that starts January 1st! April not only does blogs - but also invitations, announcements, calendars, cards, business cards, custom illustrations, and so much more! Just by pasting this paragraph on my blog I'm a winner! www.aprilshowersblogdesign.com

The Mags Winners....

Well I was hoping for more of a turn out for people wanting the magazine subscriptions! But I suppose because I haven't been the best blogger as of late, people aren't checking in as much, or we have just become boring!

But thankfully we had a few people sign up and Daniel randomly picked two numbers with his stars that we were counting this week and here are the winners.

I just need for each winner to send me their address via email with the subject MAGAZINE WINNER to mspranger(at)wowway(dot)com
so I can get that started for you!!

The winner of Family Fun magazine-
Kristina said...

I love to take the girls to the museum on rainy days! We usually go to the natural history museum as it's just the right size and age for them!

The winner of Kiwi-

Anonymous said...

I would love to win a subscription to Kiwi magazine. My 12 year old daughter is very socially conscious of what she eats and has helped us be aware, too. She found out about the way animals are treated that are grown for food, so we now only eat organic or "happy" meat! We love to cook and bake together.
Lori with the sbcglobal addy

Thanks again for posting your comment and I am sure you will enjoy the magazines, I know I do~

All I Want...

All I want for Christmas (or sooner would be wonderful)
Just in case anyone was wanting to get me anything special ;)

Two days away by myself
A quiet hotel room with a huge big bed & room darkening window treatments
A fan (for background noise...I need something)
A nice bathtub with endless supply of hot water
A big vat of ice cubes (not the homemade kind)
And once each day to get a full body massage-the works, lasting at least an hour
(IN THE ROOM - I don't want to have to leave)

Something like this but not mind you it doesn't have to be exact....these are just examples.

and if not asking too much....a manicure and pedicure?

SERIOUSLY!! Thats it? Now simple is that?!

Week Two Lesson Plan

Well better late than not at all! Here is Daniel's lesson plan this week.

We've had an interesting week, but no time right now to post about it. I just read that last sentence and giggle because its only Tuesday and I say its been an interesting week! Well it has indeed....and there is more to come! Busy- busy week!

Wanted to say thanks to everyone who sent me ideas or posted ideas on how to improve Daniel's lesson plans. I am taking those into account. We do incorporate more things into the day besides what is written above, but the chart above just gives me ideas when I'm standing there going "Duh?!"

Daniel is really making some strides in certain areas. Happy Happy Joy Joy! I'll post more later, now I'm going to try to go to bed at a reasonable hour!

Twinkle, Twinkle Little Star

Twinkle, twinkle little star,

How I wonder what you are.

Up above the world so high,

Like a diamond in the sky.

Twinkle, twinkle little star,

How I wonder what you are.