And we're UP UP UP!!!

First:

Happy Birthday Little Miss Katie down under in Australia!!!

Second:

Today Daniel went to see Dr. Chugani (his neurologist) for his first appointment since being off ACTH. And wahoooooooo, (have I mentioned before I LOVE going to see Dr. Chugani, he makes me walk away feeling that my child is just a typical child) he says Daniel is just doing great, and that we are going to start to wean him off of the Zonegran medication that he is one for seizures. Which will leave Daniel still on the Vigabatrin (anti-seizure meds) and the Robinul (for drooling, caused by the PMG).

This is a good thing, weaning the meds, but I will be honest with you. I AM SO NERVOUS!! Daniel was originally one just one anti seizure medicine for 1 1/2 yrs (vigabatrin) and it controlled the IS seizures. Then for whatever reason they came back and we added the Zonegran. This didnt' stop the seizures and that is when we decided that we'd do the ACTH (successful!). So because his EEG came back clear and the Zonegran didn't really do anything in the first place Dr. Chugani said to start Daniel on the wean. Which we will start to do this weekend and then he will be completely off that by the end of November. IT IS SO NERVEWRAKING! and I am so torn. Yes I want him off the med, no I don't want to mess with anything because he is seizure free right now! Why mess with a good thing?!?!?!

Then in 3 months we go back and we'll get another EEG. And if it comes back clean again, we will begin weaning the Vigabatrin. The thought of this itself gives me a horrible stomach ache! NO antiseizure medicine at all!?!?! ARE THEY NUTS!?!?! But hey Dr. Chugani hasn't steered me wrong yet.

Today Daddy came along to our therapy sessions and got to see all the wonderful progress Daniel has been making. In fact............Daniel took such pride in Dad being there that he even showed off quite a bit. He did laps in the hallway walking with the posture walker. He is such a show off!! He was so proud of himself. Its Awesome! (there's my favorite word again! I've got to find something else to use pretty soon!)

Pretty soon I'll just break out into cheer:

"A"

"W"
"E"

"S, O, M,E"

AWESOME, AWESOME.....TOTALLY! RAH!

An emotional day for Mom....

Emotional Roller coaster

One minute we're up!!

The next we're down!!

Up!

Down!

UP: Today Daniel had his first EI (Early Intervention)at home session for the school year. I cannot tell you how nice it was to have a good experience. This year there is a new teacher (Mrs. Kim) who used to be the teacher for EI a few years back but left to be an at home mom with her kids. Well she is back and I am very glad. She seems very nice. Another change this year is that when they come for the home visit it is not just the teacher but it is also one of the therapist. Today's experience with the visit and using our equipment at home has me thinking that this year is going to be a very good experience with the school system.

DOWN: My mother, the kids grandmother, has been fighting cancer for 20+ years. This past December we were told that it was back. She has been very very ill lately, and we have been having a nurse come to stay the days with her and one of her children (myself and my brothers and sisters) have been staying the nights with her. Today we got a call that there is a bed available for her in a Hospice home (the UP: she will be getting the correct medical treatment by TRAINED people, and she will be kept comfortable. the DOWN: the realization that my mom probably won't be coming home again, and that the home she has had for the past 25+ years, is not going to be filled with her home cooking, her knitting). It is a very very sad thing to have to go through. And yes I understand it is part of life, and that many others have gone before. But what you seem to not understand is.......this is MY mom, this is not fair, and no one should be meant to suffer this way, and to lose their sense of security. We won't get started on this but I was brought up Catholic and I do believe there is a God, but what I have a hard time understanding is why he has to make someone like my mother (or anyone for that matter, that is a good person) suffer. Again I am not opening this can of worms......because I am very thankful to God for helping Daniel along the way......but again, why is it that the good ones have to fight, struggle and suffer?

UP: Daniel is doing so great in all of his therapies, and we have been very lucky in having good therapist along the way. I hear horror stories from other parents who say that their therapists don't interact well with their kids, or that they just seem to be there for the pay. We have been lucky, Daniel's therapist, while I am sure that they are there for the money too, but they truly love Daniel. Unfortunately we had to end one of our sessions this week, for a few reasons.
Here's the DOWN: Daniel had two different Speech Therapist. One working on feeding issues, the other working on Augmentative Speech. According to Insurances, you can only have ONE type therapist. So for now, I felt that getting Daniel the communication is the most important. Now mind you Daniel has been seeing Ms. Anna, (his feeding therapist) for about a year, and she has done an AWESOME job. so there is the second part of the DOWN: We had to stop feeding therapy so we won't be seeing Ms. Anna anymore. (Unless of course I can figure out a way to swing it!)
Another reason we had to lighten the load of therapies if truth must be know....I need to spend some more time with my mother before it is too late. I know its silly and you think big deal therapy was only 2 hours a week. Well those two hours, are going to be spend driving to, or talking on the phone, or just plain sitting with my mom. I need those two hours for a while. And then maybe we can get back to that. Very selfish perhaps on my part, but Daniel will also get the benefit of spending more time with his grandmother, that I hope and pray he will be able to remember when he gets older.

Including Samuel

Hey! There are two posts today so if you're reading this one, also make sure to check out Daniel and his pumpkin carving skills!

I read about this little boy named Samuel the other day. And it hit me hard. I immediately wrote to his father Dan, and asked if I could do a link to Samuel's site. Samuel has Cerebral Palsy and is older than Daniel. But when I watched the videos and checked out pictures and read, it felt like I was reading all about Daniel. For whatever reasons, I felt a sort of bond. I want to get any information I can from these parents ( I know that there are different circumstances between the kids) but they seem to be doing everything that I want for Daniel.

There was one little clip where his mom was explaining when they noticed that there was an issue with Samuel. All the things that go through your head, "how will he be able to run and play, how will he hold a pencil in school, how will he fit in." Those are some of the things that go through my head on a daily basis. And I try with every ounce of my being to make sure that Daniel has everything and anything that might make his life a little easier. Some people may think I go overboard, or that I am to the extreme. But if it were your child, I guarantee, you would be doing the same thing. There is always the fear that I will let Daniel down. That I will skip a therapy session because I was tired or there was some other "emergency" and that could have been the therapy session that something clicked for Daniel and he understood what to do.

Any how, Samuel's father has made a documentary called "Including Samuel". Watch it. It is heart wrenching in many aspects. He did a wonderful job. I can only hope that Daniel does as well as Samuel obviously is doing.
What I hope you get from visiting his site...., just because our children are different in ways that they had no choice in, they are people, just like you and me.

I hope that people will see Daniel for who he is, not what he has. I don't want him to be known for the little boy that can't talk, or the little boy who moves funny. He is Daniel, and he is my little boy, and I could never be more proud of him that I am. He is truly my hero.

Here are some additional photos of Samuel (because he's so cute!)

PUMPKIN CARVING DAY!

Daniel was so excited about today's planned events that he couldn't contain his excitement. So even though little Zachary was sleeping in Uncle Daniel's (tee hee hee) arms. When I told him we were going to make fun Halloween breakfast treats, carve pumpkins and decorate our Halloween haunted house, he was so excited he shouted with joy!

It was PUNKIN' CARVING DAY!!!

So began the day with making our surprise breakfast. OOOOOOH Gross! We ate

BLOODSHOT EYEBALLS!!!

SICKO!!

Then we got all the punkins in the house and cleaned them all out, Dad helped a lot with this as mom as some sensory issues and doesn't like to touch the guts!

But I did my own all by myself!!!

Victoria kept telling me what to do, so I just ignored her.

What does she know??!?! She thinks she knows EVERYTHING!

When Alexandra left the room, Zachary was being loud and cranky. So I shoved him in Victoria's pumpkin and blamed it on her!

(well he stopped crying!)

After all the mishaps and interruptions I finally finished my masterpiece.

The bestest carved punkin of 2007

by Daniel Spranger

Here is our gingerbread haunted house!

Hope everyone has a fun and spooky Halloween!

Our New Goal

This is a new piece of equipment that Daniel uses at therapy.

So far it is awesome for him. What I would like is to put the word out there to anyone that comes to this blog......

This is our wish list, or christmas wish list, or next years worth of wishes.

I think if we got this for at home, and we were able to work on it daily with him, his trunk would get so much stronger.

Anyways........if you hear of one of these or you know where we can rent, use, buy cheaply, steal (LOL JUST KIDDING) please send the information onto me at my email address located under my profile. Or if you just want to buy it for Daniel and sneak it under the Christmas tree.........by all means I won't stop you, in fact I'll keep the door unlocked!!

It is called the "walkable" or the "Lite Gait" or a "mobility frame". There are many names for it, but basically what it does is it supports Daniel's trunk, while positioned over a treadmill, which will then get him the motion of walking. There is much research being done with children and treadmills. Click the link if you'd like to learn more. Our insurance, as good as it has been will not cover this as it is considered a form of exercise equipment. Plus we are still crossing our fingers on getting his power wheel chair approved!

Ahhhhhhhhhh........it's the weekend!

Today Daniel went to Early Intervention (from now on known as EI).

As I have stated before in previous posts, I am very excited for this year. I think with the group involved and the plans we (Daniel's family) have for him this year, it should be an event filled year.

The consultant from Oakland Schools came to "watch" Daniel and see how he was doing speech wise compared to last year. She said she was impressed that we were right on target and Daniel (for those of you who are new, he is non-verbal) is doing wonderfully with his eye gazing to let us know what he wants. He is making choices, he is using his arms to touch the objects/pictures/buttons & switches. He knows the steps for eye gazing, and he is beginning to really make a lot of decisions in what he wants. Its not me just giving him a toy anymore, its him TELLING me with his eyes which toy he wants. What color marker he wants to use, or what book he wants to read.

His speech therapist (Mrs. A), came to Daniel's hospital based speech/augmentative therapy this past week. Which by the way I think is WAY COOL. She actually took time off her normal schedule and drove 45 minutes to Daniel's therapy session to sit in on it and see how Ms. Pat worked with Daniel and the things they were doing. She saw Daniel in his element. He just absolutely excels when he is with Ms. Pat. She gets him doing things that I never thought we'd be able to do. Or as a matter of fact, she does things with him that I would have never thought to do. I always leave there with so many ideas and different ways to work with Daniel. I think I love Ms. Pat more that Daniel! :)

Anyways back on subject (I tend to ramble!) at EI, the consultant from Oakland Schools said that Daniel was doing really well and she'd be back in a couple of weeks with some voice boxes, to get Daniel use to when he pushes a button it will speak what he wants. (ex: I want to play with the bubbles, or I want to eat.) She is also going to bring out a DynaVox for me to see. Now mind you Daniel is not ready for a DynoVox YET.......notice that I said YET!!! Because I have faith that he will be some day in the very near future.

It was exciting today because Drew (Daniel's friend from EI) was back in school today. Drew has been sick and in and out of the hospital for the past month or so, so it was very nice to see him there. We also found out today that another little girl with CP will be starting to attend EI, that is about the same age as Daniel and Drew. From my understand this little girl has more mobility than Daniel, so I am hoping that Daniel will see that she can either roll and/or crawl to something she wants. I believe that Daniel, once he sees this on a regular basis and because his truck is getting stronger he should hopefully be able to do it in the next year. maybe it will be sooner........he continually amazes me, so who knows.

This weekend we are going to go treat or treating in downtown. All the stores set up and have little toys or treats for the kids in costume. We did it last year but Daniel wasn't really old enough to understand it. I think this year he'll have a blast. I will upload some pictures of our "treat or treating" this weekend!

Thanks for coming to visit, and remember, if you can........say a little prayer for Grandma T.
She is very sick and needs all the prayers she can get. Take care and I hope everyone has a wonderfully exciting weekend!

The Big Guy on the Treadmill!

Here is Daniel on the treadmill for the first time. Please do not take note of his posture as we know it is horrible right now. What we were looking for is to make sure he understood what to do with his feet and legs. We added music because all you would have heard is Daniel screaming and giggling!! His screams are quite high pitched and we didn't want to damage anyones hearing! He did pretty darn good for his first time.

Make an on-line slideshow at www.OneTrueMedia.com

WOW, can I breathe now??

Gosh, I thought life was hectic about 3 months ago, but sheesh....when it hits the fan it really hits hard!

So, here's the low down.

1) Its been one week since Daniel has been off the ACTH, we are still seizure free (everyone knock on wood please. Thank you!) His personality is back with flying colors and he LOVES therapy again! No more crankiness from the ACTH (there is some fussiness from #3 below!). I swear he is getting chubbier since he's off the steroids.

Daniel is also not eating everything in sight like he was while on the ACTH, but he still says "yummm" when anyone has food! (he's so cute!)

2) Hubby got some free tickets to see Nemo on Ice (which I was oh so happy to get!). Wasn't sure how Daniel would do with it but he so loved it. It was a nice time out. Brittany and Victoria got to come along too. So you can only imagine how much fun Daniel had with them. Ms. Carol & her little girl were there too. We were in a suite, which was way cool, free food and drinks. It amazes me how much things cost there....a snow cone.....$10.00. Can you believe that $10? for flavored ice??? sheesh! The minute the show started, Daniel eyes were glued! Absolutely loved it! We just "splurge" and get Daniel the Nemo hat w/cotton candy....now if it only fit!!!

3) My grandson (gosh that's weird!) is doing very well, along with his mommy. Boy that child has so lungs. For the first two days of his life he didn't make a peep....I suppose he was storing it up for when he got home from the hospital! Well at least he knows how to behave in public right?!?! Every parents nightmare! Daniel's still not too sure what to think of little "z". I know that he thinks it's extremely funny when the baby cries or if you want to send Daniel over the edge into fits of hysterics....bring him around the baby when he has the hiccups! Its a hoot! He does get a bit jealous when he sees me holding the baby. He'll do his little boo-boo lip and pout. Its very cute! Here he is pretending to play the harmonica! tee hee hee.

4) My oldest daughter is settling into her new house, they are still working on getting things cleaned up and to their liking but they are "homeowners"! She is so excited to have her first Halloween there. Remember when ...."Oh that was our first Christmas.....that was our first night there, .....that was our first snow storm...." all that mushy crap! After you get older you're like "Yeah whatever!" LOL. But I am glad she is happy.

5) My college child is doing well. She doesn't understand that she isn't around the block, she is hours away. So she calls....will you come get me.....my response....."Oh sure, what the heck, I've got 10 hours to spare!" I will say this, it is nice to have her home. Plus the fall colors are so pretty on the drive.

6) My little girl, the high schooler....she's doing really, really well, hanging in there, good grades, doing the sports and just having fun. That's what they're supposed to be doing right? Here she is at her first high school "homecoming". She's the one on the left. Isn't she pretty?!?!

7) Daniel is doing so well at all of his therapies, we are so proud of him. Here is a little picture of his latest at physical therapy. Please note that we are not looking at his posture at all we are just looking at the fact that he is able to get his legs going in the correct motion. This was the first time Daniel had ever used this equipment so we were all very happy with how well he did. Yep that's Daniel on a treadmill. He walked for 15 minutes!! Wha Whoooo!

8) On a sad note, Daniel & the girls Grandma, isn't doing really well right now with her fight against her cancer. Seems that the cancer is winning right now, but hopefully she is able to hear every ones prayers and she will soon be able to fight back. If everyone could add Betty to your prayer list it would be greatly appreciated. She needs it right now. And I would certainly appreciate it.

WE ARE DONE!!

NO MORE ACTH SHOTS!!!!

We are so doing the happy dance!

Pumpkin Patch

Even though Alexandra just had her baby and is still in the hospital, the rest of the family went on the annual family pumpkin patch trip. All went well, Daniel even got to ride the pony this year. Even though it was a bit chilly, it was a good time. Here are some photos to show the fun.






Here is Daniel showing us his pumpkin!

A New Addition...

Alexandra is a Momma!

Zachary is Here!

7 lbs 1 oz.

20 inches long

This all makes Daniel ......................his UNCLE!!!

Check out the facial expressions when he is first looking at Zachary

Here comes the scowl.....

Then...Hey he's pretty cool!

We won't even mention what this event makes me!

OOOPS! I forgot a birthday

OOPS I forgot an October birthday but I have an excuse!

She is new to the family! Happy belated Birthday Kendra!

October 6th!

ACTH - Week Six..........

yahooooooo!

6 more shots to go!

Well, today we did the final wean. We are at .06 ml per shots. We are in the finally week and I can't wait for it to get over with. We are doing really well. He is still a little cranky, and the sleep isn't the greatest. We have an early riser, and neither Lonnie nor I are morning people! HA HA

Daniel had his Echo Cardiogram today to make sure that his heart wasn't enlarged from the ACTH. And the doctor that reviewed his test said everything looked good. So keep your fingers crossed that the seizures stay away, that his heart stays the right way, and that he gets his normal bubbly happy personality back. I do miss the days when he didn't cry.

This coming weekend, Alexandra's labor pains permitting, we will be going to the pumpkin patch to pick a pumpkin. We'll have to post pictures of our exciting adventure to seeing the Great Pumpkin!

Wordless Wednesday

Week 5 - ACTH........We're Doing the Count Down!

Well again today being Tuesday, we did another lowering of the dose. We are now on .125 ml of ACTH. My poor little guys legs look like pin cushions...holes all over with little tiny bruises.

Only 13 more shots!!!!

I would do the happy dance again but our legs are still exhausted from our happy dancing earlier in the week!

Daniel was due to have an echo cardiogram (required after 4 weeks of ACTH) this week, but because of unforeseen circumstances out of our control, it has gotten rescheduled until next Tuesday. So hopefully that comes out well, with the only evidence being that Daniel does have a heart, and yes it is beating correctly. We do not want to see an enlarged heart!

The Chloral Hydrate that we got prescribed for Daniel has worked wonders, there is such a change in him. And to think that all that time he was cranky, all he wanted to do was sleep and couldn't. Poor Baby.

I am so happy we are almost done with the ACTH but then on the other hand, I am nervous that once we are off it that the seizures will come back. Hopefully I am wrong!

We are still waiting for Alexandra to have her baby. 11 Days until the actual due date and counting.

Need to do the Happy Birthdays for this month as there is a lot so we'll just list them here. Seems that October is a busy month for my family.

So here goes

Oct. 2 - Uncle James

Oct. 4 - Uncle John

Oct. 8 - Cousin John Paul

Oct. 8 - Cousin Dawn - she's 30!

Oct. 9 - Aunt Aimee

Oct. 13 - Cousin Adam

Oct. 16 - Cousin Tracy

Oct. 20 - Uncle Mike

Oct. 31 - Cousin Katie

and somewhere in there hopefully is Nephew Zachary!

(Isn't that a hoot, Daniel will be an Uncle at 2 yrs old!)