Tuesday, June 30, 2009

Vacation from Therapy is over!

I’m so excited.  Not sure how Daniel will feel about it.

We finally got the approval again for his therapy to start back up.


So after being off “professional therapy” for over a month…

Tomorrow we are back at it.

Speech = 3 x a week

Occupational = 2 x a week

Physical = hopefully 3 x a week

plus looking for a summer program to do also. hopefully swimming!


Hopefully it won’t be too tough on him.  We’ve been working on things at home so he shouldn’t be too far behind.

Friday, June 26, 2009

Just sharing…

A friend sent this to me, and I just love it…



A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"

"Your angel will be waiting for you and will take care of you."

The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."

Again the child asked, "And how am I going to be able to understand when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care, your angel will teach you how to speak."

"And what am I going to do when I want to talk to you?"
God said, "Your angel will place your hands together and will teach you how to pray."

"Who will protect me?"
God said, "Your angel will defend you even if it means risking it's life."

"But I will always be sad because I will not see you anymore."
God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."

At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."

"You will simply call her, 'Mom.'"

Thursday, June 25, 2009

Summer Days

I love summer, but summer heat does not do so well with Daniel.  So we do many things, but most of the time we’re in the house and only outside for short periods of time.  Then we come in, get cooled down and then venture back out.


We were able to borrow a stander from Daniel’s school to use for the summer. Thank you Ms. Lynn!

Well if you’ve read earlier posts, we just got approved for our own Standing Dani wheelstand. (Can’t wait to get this!)

But for now, we’re using the one that he is use to using at school. He started off not to sure what was going on.  Got confused a little as to why his school stander was at home!



004As I mentioned before, we went last week to see Dr. Chugani.

Of all the doctors that we see, Daniel likes Chugani the best. Of course his nurse always tells us NOT to tell the doctor because it’ll go to his head!  But if you “google” Harry Chugani, you’ll see that many people besides Daniel think he’s a Rockstar!


The doctor that Daniel does NOT like is his dentist Dr. T. 

The guy is very nice, but the minute we pull into the parking lot, Daniel immediately knows its not going to be good.

Below is a photo of Daniel shortly after being medicated for his dental work.

He should be happy right?!?!


Life is good once you’re back in the car and you have your blue balloon! And I imagine you’re still buzzin’ a little too! (check out those eyes!)













Now, for the really cool news….


TA DA!! 


Daniel in the Wingbo swing I mentioned in an earlier post.

LOL.  I am so impatient….I KNOW he isn’t suppose to be in the swing using the little baby base, he is too big and can’t really swing this way.  BUT let me tell you this, it is awesome for him this way too.  He has his knees underneath him and he is bearing weight on his arms.

So he was rockin’ back and forth!  It was awesome because he cant hold this position on his own yet.


So we waited for Daddy to come home and I talked him into hanging it in the archway between the kitchen and dining room.  We have it low to the ground so Daniel can use his legs to swing himself.  He’s still not sure how to do it, but he loves when I swing him.

Again, the swing itself is awesome because Daniel can’t swing in a typical swing sitting up because he cant support himself great.

The best part of this, see the way Daniel is in the photo below….He has to hold his head up, which builds his neck muscles, his upper back and so much more!



006 009









Now, please don’t have a heart attack like I did when you see this picture. 

We have always been able to put Daniel on the bed (we have a king size bed) and go get his meds ready and get things ready for bed. 

Daniel doesn’t roll over much, rarely at that.  But walk into a room and see your non-mobile child hanging upside down off the edge of the bed.  WTH?!?!   Look closely at this picture…he is VERY proud of himself. 

Thank god we have his little bed at the end of our bed…and he didn’t fall off.


Pull him back to the center of the bed and quickly he does this body flip, bend, thrust ,throw and pushes backwards with his legs until his head is hanging over, and he watches the TV upside down!  He actually cries when I move him..he LIKES it.


I guess no more leaving him on the bed alone!  Can’t wait to see what other things he learns this summer, and if I live through the summer.  I suppose he’s just being a typical 3 1/2 yr old!



Tuesday, June 23, 2009

Need a laugh?

Someone sent this video to me, and its one of those ones you need to share.

It's titled "Are women born this way?"

Monday, June 22, 2009

Standing Proud

I am very excited to get a call today from DavisMade.
We have waited many many months to get approval for Daniel to get a stander.

It was rejected many times, but with the persistence of his physical therapist and his doctor, it finally got approved!!

So, in about 3 weeks, Daniel will be standing tall and proud in his own Standing Dani. I can't wait!
Pictures to follow in the coming weeks!

For those that have facebook information can be found here: click
Here is an article about the wonderful products they have and a little boy who was able to get his.

In case anyone is looking for something like this here is some more info:

DavisMade, Inc. 5316 Lapeer Road Burton, MI 48509 (866) 742-0581 / (810) 715-0946 (fax) / davismade@standingdani.com / www.standingdani.com

Dan Davis invented the Standing Dani[R] Wheelstand for his daughter Dani, who was born with cerebral palsy. Prompting from Dani's physical therapist to make more of Dan's "mobile standing contraptions" for use at school led to the development of his idea into the wheelstand it is today. In the late 1980s, Davis left his job at General Motors to work full-time selling his wheelstand. DavisMade, Inc., has been in business since 1985 and currently employs two full-time and two part-time employees.

The Standing Dani Wheelstand is reportedly the only custom manufactured, self-propelled (either manual propulsion or power-drive option) mobile stander. It is durable, portable, and therapeutically beneficial for children with a wide array of diagnoses. The Standing Dani[R] Wheelstand can be used in- or outdoors and comes in a variety of colors. It is appropriate for children 24-64 inches tall who would benefit from weight-bearing through the lower extremities.

Pricing/funding: Contact company. Covered by most insurance companies and other funding sources.

Warranty: 3 years minimum on wheelstand

Delivery: Depends on location

Friday, June 19, 2009

Busy Week

Well this is the first official week off school.

Aren’t you suppose to sleep in and relax?

Well apparently NOT at my house.


We had our check up with Dr. Chugani (some call him the Rock Star of Neurology).

We had our dentist appointment with Dr. Tracht

I (mom) had an MRI on my knee. (WOW that machine is loud).

Today we go pick up Daniel’s new DAFOs.


Recap of appointments-

Neurologist – Doing well. I love going to him most of the time, we always leave feeling like there is realistic hope.  He says things and you can tell he means it.  If any of that makes sense?!?!


Daniel’s weight is 41 lbs. so that is pretty good.  First thing Dr. C said when he came in the room.  WOW he’s getting big!  We made a change in one of his medicines.  We are scheduling a MRI with DTI.  I am nervous about this but also excited.  I don’t know all the technical terms but what this will show is if the area that is needed for speech has developed correctly or at all.  If it hasn't at all, then Daniel speaking is very very slim. If it has developed there is a better chance that speech is possible for Daniel.  Not 100% or anything but he said we would then get working on speech development very aggressively.  I’ll post more on this later.

But all in all, he is doing well.  Everything we had concerns about, Dr. Chugani simply said….He’s only 4 yrs old…give him time.


Dentist – God I hate these appointments.  I always make Lonnie come with me.  Then he goes with Daniel into the room.  I can’t do it.  I did it once and I had nightmares afterwards.  I get shivers thinking about it. Daniel gets drugs but they don’t seem to help much.


AFO – Cross your fingers and hope they fit right!

Tuesday, June 16, 2009

(beep beep beep beep) LATE BREAKING NEWS

Channel 7 News - Sock Puppet Attack Inside Family’s Living Room

Authorities say that the sudden appearance of a white sock puppet with button eyes was seen in Michigan. This is the first sighting by Daniel S. of Michigan and we’re hoping it will be the last!


Moments ago authorities released a police artist’s sketch rendering of the suspect in the near heart-stopping sock attack from this morning.

WARNING: If you see him, proceed with caution. He is known to be “armed” (get it? armed...you know on the arm...oh never mind).


sketch drawing

It isn't too early to be thinking about safety precautions should you meet up with the creature.


Today, in a typical morning ritual of getting Daniel ready for the day, the victim’s mother decided to play with Daniel’s sock while getting him dressed this morning. But then things got out of “hand” (get it? on the han...oh never mind) and the sock puppet took control. It was crazy….the once loved sock puppet of younger years turns wild, and uncontrolled…



During this tragic event Daniel was scared stiff by the sock. Unable to open his eyes in terror as his sister was mauled upon the face with sock kisses.


009Screams of terror erupted from the poor boy, who is sure to be scarred for life.


Fearing for his own life, because of the blood curdling screams that erupted, the sock puppet escaped under the sofa.


Family members and friends are holding a vigil until the sock puppet is captured. Many participants wearing shirts to show their support.


sock_puppets_are_evil_tshirt-p235447368977677879t58d_210Daniel is currently at home with his family recovering from what people are calling “The Shock of the Sock”.


Professionals are expecting a full recovery. He still harbors anger towards his mother and refuses to smile at her. He blames her for this incident. Its a shame….she was only trying to play, and look what happened! Lesson to be learned: SOCK PUPPETS are not welcome in Daniel’s house!



Monday, June 15, 2009

Cloudy with a chance of underlying sadness

Why when I should be happy and smiling do I always have this gnawing sadness?


Why when I am happy that Daniel is doing something new, do I smile then get sad?  Because I realize that he should have done it two yrs ago?


I hate this feeling.  There are times when we’re laughing and having fun,and then the next minute tears are in my eyes and my chest aches.




Why can’t I be happy with how things are?  they could be worse right?


I am so sick of being depressed about what should have been or what will come.  Why can’t I just live and be happy?

Thursday, June 11, 2009

Officially the end.

Tomorrow I will be going to Daniel's school and picking up his stuff. He's done for the school year. He's been out of school for a couple weeks now. It started with him having a cold that worked into a sinus issue. Then the day I was going to send him back to school the teacher was nice enough to call and let me know that they had a confirmed case of swine flu in his room. So much for going back! She knows how difficult it is for Daniel to get over things, so believe me I really appreciated her call!

Anyways, Lonnie & I decided not to risk it and we just called it a school year ended early.
It kind of sucks because Daniel really did enjoy going to school. After all my complaining at the beginning of the year on how much I HATED IT, I ended up liking it. I liked it because Daniel seemed to enjoy himself and it got him away from me for a while. I am sure he gets sick of looking at me all the time!

It is good to know that Daniel will have the same teacher next year, which I am pleased with as I believe she really cares about Daniel and the other kids. She's one of those people that when you meet her you know 'she's good people' and she isn't fake. Or at least I think! :)

She's so good that she has actually got me to let Daniel attempt to ride the bus to school for the 3 blocks! That is a big accomplishment. Now we just need to work on Lonnie!

So tomorrow, I pick up his equipment. They are letting us use a stander they have for the summer. Which I am so thankful for because we don't have one. Trying to get a standing dani approved through our second insurance and its like pulling teeth!

So for Daniel, summer if officially here.......and now hopefully we will start with therapies and I'm hoping to get him into aquatic therapy or hippotherapy. We shall see!!

Wednesday, June 10, 2009


Finally, we got our yearly renewal for insurance through the state.....

Now we just have to wait for the approval to continue therapy.
Both Daniel and I are itching to get back on schedule!

Cross your fingers!

Tuesday, June 9, 2009

Feeding Issues

Not fun.


Nope, not at all. No laughs or giggles taking place here.


I’ve talked a little bit about Daniel’s eating issues.  I’ve started posts before then ended up deleting them because it always sounds like I am not grateful that he eats orally.  I am.  It is just stressful, for me and for Daniel.


Let me start from the beginning-

1. A child with spastic quad CP generally has issues with feeding. From what I have seem, most have feeding tubes.

2. A child with BPP (bilateral perisylvian polymicrogyria) most definitely has issues with swallowing.  Some more than others.

3. We have had a barium swallow test. Daniel freaked out during it, and aspirated on some thicker mashed potatoes.

4. Daniel chokes easily on thin liquids.  We must add Thick-It to his foods to make it the right consistency.

5.  Daniel is 95% bottle fed. He drink a special formula with extra calories in it.  He also uses Scandishakes to add additional calories, along with Duo-cal.

6. Daniel can eat baby foods “stage 1 and 2” only.  These also have to be thickened, and its hit or miss on how much actually stays in his mouth.

7. There is paralysis in his mouth/jaw and he does not have a strong enough chew/bite to actually chew foods.  He can eat things that melt quickly in his mouth.


All of that being said, Daniel has never choked where we have had to call 911 or do any procedures.  Lonnie & I are pretty good with watching him while eating/drinking.  We know the signs to watch for, we feed him slowly, and he has never had pneumonia. (knock on wood)


It has been recommended before that Daniel get a feeding tube.  His swallow isn't’ strong enough.  We at the time said NO WAY.


I’m not 100% sure what Lonnie’s reasoning is behind his vote of NO.

Mine – I think was because he is a good size, he is obviously getting enough calories in with all of our tricks of additional calories.  Those were the main reasons.  In my head I said to myself I know that one day he will need it.  I am wondering if that day is coming up quicker than I want.


I know many parents feel that the feeding tube is a wonderful thing, and I am sure it is for some.  Daniel loves to “eat” (mouth) things that we are eating.  He wants to eat, but he can’t.  It just all sucks.  There is so many reasons why I don’t want him to have one, but then on the other hand there are so many reasons he should.


Will it be harder on him at 4 yrs old to have this surgery then it was when he was younger?  Will he still want to eat orally?  Can the tube come out eventually and he be orally fed if he can learn to chew? Am I harming him more because I haven’t gotten it done?  When he goes to school full time he cant be drinking from a bottle (and yes we’ve tried Sippy cups – I have about 100 different ones in the cupboards).


Lately he hasn’t been eating well (drinking the bottle) he just doesn’t want it.  He doesn't’ want ‘baby food’ he wants what we eat. So by no means is he actually getting any calories from the feedings but only from his bottle.


Where it normally takes about 45 minutes to an 1 1/2 hrs total throughout a day to feed a typical child, this is how long each session takes to feed Daniel an 8 oz. bottle.  He needs 5 bottles a day to get the correct calories in.  Then add on that the times we are feeding him jar foods (another  hour or so) and you’ve got a lot of time spent trying to keep his calorie intake up.


Its stressful, and its frustrating.  One day he’ll eat like he loves it…other days its a fight.

Monday, June 8, 2009

Wingbo Swing

Well add this Wingbo tummy-time swing to the list of wants.
Why does everything that will work for Daniel have to cost so frickin' much?

Why can't companies understand that people who care for special needs people do not have extra money? Why can't you make it a little more accessible for us?

Newsflash- A lot of us are single income families. Not generally by choice either but because day care for a special needs child is outrageously expensive.

The benefits of this swing would be great. He would be having fun in it and he would also be working his core to strengthen his back, upper shoulders, chest....endless possibilities.

Of course, another discouraging day realizing all the things you can't get your child because it costs 4X as much as a standard child's swing.

Sunday, June 7, 2009

It’s a Bird, It’s a Plane…

No, it’s Super Daniel!!


003When ever I make something, my oldest daughter always says, ”Well, that’s cute but how come you never make anything boy-ish?”.  So, this weekend I made Daniel a Super Hero cape.  Turned out pretty cool.  Plus he likes it!


Then, to add to the enjoyment of the cape, Victoria (age 16), also had fun with it!


Well, I had her model it for me.  BUT, little did she know of my evil plan of having Lonnie whip up a little computer magic…and we now have the best piece of blackmail ever!!!

SuperTori copy

I am also going to make Batman and Wonder Pets.  If anyone is interested in this cool little ditty, it can be purchased over at the other blog


Friday, June 5, 2009

Zoo Expedition

Daniel missed his field trip last week because he was out sick. So, today I decided to take him to the zoo.


It started off with good intentions.  Daniel enjoys being outside.  Daniel does NOT enjoy being up close to the animals.  He likes pictures of Animals.  He does NOT enjoy the roaring tiger.  I could tell he was getting scared so I started to undo his seatbelt on his wheelchair.  The kid almost jumped out of the seat and into my arms!



I guess I am a little confused.  Is it just my child, or do children with CP have sensory issues?  Loud noises, big objects freak him out.








Here is a photo where he isn’t too freaked out. Also in the photo from left to right.  Zachary (his nephew) Brittany (his sister), Daniel and Victoria (his other sister). 


We decided to take Zachary with us cause his momma (Alexandra) is in the hospital.  WOW he is a handful!  He is very quick to undo his own belt and take off like a bat outta hell!


Oh well, at least we were outside for a few hours.  I don’t think Daniel missed too much from his field trip.  His teacher however I am sure would have had her hands full with my sensory issue child! :)

Hospital Woes

Well this time it isn’t Daniel who has the hospital visit.  The second oldest of my daughters is in the hospital this week with some medical issues that will involve some surgery.  This child has the worse luck when it comes to medical stuff!!


So, while she is in the hospital I’ve been doing babysitting duty or her littlest one, Chase.  Chase is only 2 1/2 months old, so you can figure out how much care he actually needs.


It has been determined that Daniel does not like when momma is holding another baby and feeding him.  Daniel also does not like that Momma “talks” to any other child. Daniel is jealous, which tends to make things a little more difficult.  Whenever I put Daniel down to tend to Chase, there is a loud uproar.  I try explaining it to him, and I am sure he understands me, but just will not cooperate!  Then when I have Daniel in my arms and Chase is in his rocker seat, Daniel is all cuddly and kissy.  Keeps looking up at me with the “I love you mommy” look.


So say a prayer that Alexandra is home soon.  I don’t think Daniel can take much more!! LOL

Thursday, June 4, 2009

Thursdays Train

It has been discovered that even though Daniel has never watched Thomas the train, he loves him.


So because he has been out of school sick and there are currently illnesses in school, we’ve kept him home.  So today to occupy the time I set up a new train we got him.  DO you think he likes it?

Wednesday, June 3, 2009



Who stole my baby and replaced him with this big kid?!?!
Daniel in his swing 6/09
Daniel in the same swing last year 06/08
Another one from the other day. Notice the big boy-ness?

Daniel from last year in June

Where did all my baby-ness go???

Tuesday, June 2, 2009

In My World

Welcome to "my world".

Until recently I hadn't realized how much I have retreated to "my world",and how much I have come to resent the 'outside world'

A blogger friend of mine, Ellen from To The Max recently posted about the same thing.
She gets it. Other parents of children with special needs get it.
People who don't have special needs children do not understand. They just can't relate.
Sometimes, its even the people who are close that sometimes just can't relate.

My safe world equates to our house, therapy, and his preschool classroom. These places, I don't mind being at. Take us out of these areas and I am uncomfortable. I am ready for a fight. Sometimes I'm just looking for someone to stare, instead of going about my own business and enjoying my child and our time.

At home, there is no one there to judge Daniel because he can't sit up on his own, or he has a special seat to sit in. Or he screams in excitement, or talks in his jabber-walkie talk that we understand 99% of.

At home, only people who understand us are here. Not people who will look at him weird or ask "what is he doing?". And if there are people here like that...I am uncomfortable and I want to flee to an area that they aren't.

I don't like answering the questions, or getting the looks of pity, or the questioning looks, trying to figure out what is going on. Just go with the flow..
he's not going to bite you, there is nothing to feel uncomfortable about. He is a little boy, with an amazing smile.

Sometimes I don't mind being the recluse. Then there are other times when I get pissed off because I feel we cant experience the things that everyone else gets to. Why can't we go about our lives without the ogling eyes of the outsiders?
Why is it that because a person can't walk, that people just love to stare?
Or because a person isn't talking?


Monday, June 1, 2009

American Sign Language

One of Daniel's older sisters has taken sign language courses at college.
The younger one in high school has taken two years of German.
She decided that instead of learning more German to meet her graduation credits , she would like to learn American Sign Language. This isn't a class offered at her school, but it is offered at other night/college classes, that we could pay for.

She went to her counselor to inquiry about how to get the credits to apply towards her grades.
She was told American Sign Language isn't really a "language", and they could not do it.

Not really a language? I beg to differ.
What's your opinion?