Sunday, April 27, 2008


One would think as I am walking through the grocery aisles, picking up different items, shaking my head and placing it back on the shelf, that I am doing so because the item is too high in calories and/or fat.

Quite the contrary......I'm looking to fatten up a little boy. Making sure that he keeps that scale tipped at least at the 30 lb. mark! Do I sound like the witch from the gingerbread house in Hansel & Gretel?

I felt like going over the loudspeaker at the store

"Attention all Grocery Store Shoppers....The first person to get to the little boy in aisle 2 with the highest calorie pureed food or condiment will receive a $20 off their bill!"

There is hardly anything that I could find that had any large amount of calories in a small amount of food. Daniel doesn't eat a lot, so it really needs to be packed with the calories. Anyone reading this please....send me recipes, give me ideas of things to make or buy things that he can eat. He can't have solids, he can't have thick pureed foods like dry mashed whatever it is, it needs to be blended and liquified. Jars of baby food have approximately 70 cal. per 4 oz. jar. that's not much. I'm looking for something more!

Friday, April 25, 2008

Packin' on the Pounds

My chubby-lumpkin!
Just got back from seeing the dietitian at Children's for our monthly visit.
Daniel's weight is up to 30 lbs 6 oz! that is the 25-50 percentile for his age and height! WAHOO!!!!

G-Tube? NO
Cautious feedings, most certainly, as he is high risk for aspiration......but he is thriving. Never had pneumonia...and won't get a g-tube until we feel he needs one.

We're following our guts here and we might end up regretting it later. But right now I so strongly feel we are making the right decision. Again, I am not saying no to a g-tube forever. If it is needed at a later date and Daniel is showing signs of needing it.....I'm all for it. We have obviously been doing something right for the past 2 1/2 years since he has never been sick from aspirating. He is not silently aspirating, when he does (rarely) get in distress he does what we all do, he coughs. Not all kids with special needs do this, some don't have that come to them naturally. So for now, yes the information is stored in my brain and it might resurface in a while, but for now.......its stored, duly noted.

Now, off to the dentist to get his chipped tooth fixed! No, I couldn't tell you what the heck he chipped his tooth on either. He eats pureed food for goodness, and he doesn't chew on toys! Just woke up and a chunk of tooth missing! Whats up with that?!?!

Oh by the way.........18 days until Florida trip!!! Anyone have any advice of traveling with a special needs child? I've never done it. Heck how about traveling with a child in plane.........never done it! LOL

Wednesday, April 23, 2008

Twenty Days and Counting


20 days until Daniel and part of the family get on a plane and fly to Florida for 7 wonderful, hopefully stress free days!

Stress Free..........ahhhhhhhhhhhhhhhhhhh
Can't wait. Just hope I make it through the next 20 or so days...just came up so quickly and now I feel like I'm scrambling to make sure I get everything I need to have done before we leave. Because I've never flown with Daniel or Victoria for that matter, I'm nervous about how they will both handle it. If there will be issues with any of Daniel's medicines, his car seat, our luggage, his wheelchair....just plain ol' nervous.

For those of you who don't know, Daniel was granted a wish through The Rainbow Connection in Michigan. We thought about it for a really long time and we were going to use the wish for equipment or therapy, but in the end we decided that Daniel works hard enough every day and does 9+/- therapy sessions a week plus many things at home. He deserves to have some fun. So Disney and Florida it is.

Today he received an email from the "Mayor Clayton" of Give Kids the World Village. Here is how it read:

Dear Daniel,

I just heard the GREAT news - You are coming to visit me and my friends at Give Kids The World Village!! Wow, we have so much to do to get ready for you and your family - I can hardly wait for you and your family to join us.

Now what was that you said?? Ohhhhhh you want to know what kind of fun you can have at Give Kids The World??

No problem! Check out this link and see what awaits you at our Village:

I'll see you soon!!
Love and Friendship,

Mayor Clayton

Now how cute is that?!?!?! He is going to be either really really excited about the 6 ft tall characters or he will be terrified. We shall see.......

By the way, here is a photo that I did get from my "Duh! Day" when two little friends, that have the exact same RARE brain malformation that Daniel has, came to visit. I only got a photo with one of the girls.......because I had a brain fart and forgot to get more photos. That has been happening a lot and I'm very surprised at myself as I am usually that obnoxious person who always has to document everything with photos!

Daniel and Maeve

(Daniel just woke up and Maeve is as chipper as can be!)

Tuesday, April 22, 2008

Hey..Did You Hear That Pin Drop?

Did you hear that loud swoosh noise as all the air was expelled from holding my breath?

Daniel had a modified barium swallow test on Monday. He aspirated. Enough said? They stopped the test after that. Took a whole 10 minutes. And without attempting, or asking or inquiring about his history.
G-Tube recommendation.
You would think with the thinks that are "wrong" with Daniel, we would be more use to hearing these types of things. No matter how many times someone tells you something is wrong or needs to happen.......the wind get knocked out of you.
First let me say I am NOT in denial that Daniel has medical issues. I am well aware of that. More than I want to be, and I'm sure we aren't done hearing of things that will come up.
Yes I know Daniel has feeding issues. Yes I know that part of the CBPP (brain malformation) that he has, it is known that children have swallowing problems. Last year, if they would have told me.....g-tube, I think I would have probably been more on their side of the fence. But he has gotten so much better, he doesn't choke on his saliva anymore. I don't have to do emergency pull overs on the highway to grab him out of his car seat and beat on his back. We haven't had to do that in over a year. He obviously has issues or he wouldn't have been going to occupational therapy for the past two years. But his eating has gotten better. Did I know in the back of my head that yeah probably sometime in the future we'd have to figure out ways to add more calories because he wasn't able to eat the big things.
But listen, the recommendation for a feeding tube is not because of "failure to thrive" it is because of "high probability of aspiration".
Although Daniel hasn't gained too much weight in that last nine months he has maintained between 26-30 lbs and he is 37 in' tall. that isn't a feather weight for his age and his condition.....he is holding his own.

He also has never had pneumonia, he has never had any type of lung infections, or bacterial issues with anything......
I would be more than welcoming of a g-tube if I felt that Daniel was at high risk. He hasn't been sick in 2 1/2 years, he is probably one of the healthiest kids around. He is rarely, if ever sick. Considering that he is constantly around other children with weak immune systems because of their conditions......he's chances of getting sick are higher than normal.........and he hasn't.

We will wait to talk to the doctor to hear his recommendation, but until someone can tell me that it is in Daniel's best interest to be 100% tube feed....then its not going to happen anytime soon. Yes I understand that in the future it will probably be needed....and at that time I will do what is best for Daniel. Don't get me wrong, I understand g-tubes and they are life savers for many children. But just not Daniel at this time.

But I am going with my gut instinct here, and it is screaming.......NOT YET! when he falls off his weight curve on the growth chart that he is currently on and/or he starts choking, or aspirating, gurgling, whatever you want to call it....then we will get one. We will continue to feed him his Resource for Children high calorie formula, and feeding him baby food that is slightly thickened to apple sauce consistency, with the added Duo-Cal to get in more calories.

I'm still waiting to catch my breath......this was the last thing I expected to hear.

On a good note for the week.....Daniel is one of the Miracle Child stories for the Children's Miracle Network. They are doing a radio-thon on May 8th to fund raise for monies to go to the children's pediatric rehabilitation at beaumont hospital.
So we had to drive to the radio station that is hosting it (WDVD 96.3)and do our interview with Blaine, Lisa and Allyson. Thank goodness it wasn't a "live" interview. They were recording it and they can edit and put to music. Hopefully I don't sound too stupid and studdering all over the place from nerves! I guess we'll all find out on the 8th! Listen to the station and pledge!!

Saturday, April 19, 2008

Can You Say.............DUH!

For the very first time ever, I think I forgot to "photo-document" a big thing with Daniel! I am so very ashamed, I can barely hold my head up high anymore! Sheesh, what is this world coming to when the mother of a handsome little boy have not just one cute little girl over, but TWO cute adorable little girls over to entertain her son, And said mother forgets to get photos!!

These two special little girls were both preemies, and they both have the exact same diagnosis as Daniel. Let me repeat that......cause I'm still amazed. They all have bilateral perisylvian polymicrogyria and the added disagnois of Spastic Quad Cerebral Palsy.

I believe Daniel is the old of the three, then Ruby and Maeve. Daniel originally met Maeve last year when we tried out conductive education in Grand Rapids. Which seems to be doing really well for Maeve and her mom (Kara)
Kara was kind enough to tell me that she met another family with the exact diagnosis but that are from Michigan (rather close I might add!) so they also stopped by..Her name is Ruby and her mom is Jody.

It was so nice to get together with other parents that know what you're dealing with and can understand the fights and arguments that go on. The frustration levels that grows so quickly.

The girls were the cutest little girls.......and of course I was so into them and everything going on that I forget to get a photo. I only got one of Daniel and Maeve (and I forgot to ask if she'd mind if I used the photo on the web, so until I get the ok I wont' do it. But I will hint that it is a very cute one! Its nice to bounce ideas off other parents going through the same thing......or experiencing the same stuff so so to be experiencing it.

Come to find out that Ruby might actually be going to the same special needs preschool that Daniel will be attending next year. Which would be oh so exciting!! Its Nice to meet the parents of kids with the rare brain malformation that they have. When Daniel was diagnosed 2 or so years ago, there were only 40/60 known cases, so to be able to find two such wonderful mom's and their kids that are close.........

Anyways Duh! I forgot to get a photo of all three of the kids.
Well just wanted to say thanks Kara and Jody (and Kara's mom) for bringing the girls over to see us.

Saturday, April 12, 2008

Bike Day!

Today was bike day through Beaumont Children's Physical Therapy.

What does that mean? Well I'll tell you!
Bike Day is when kids get fitted properly for the correct size bike helmets.
Bike Day is when the kids that are almost 3 years or old, that have the ability to learn to ride, get to go in and get measured and try out all the different special needs bicycles that are out there. A bunch of different vendors come in, you get to look around with the therapist and find which one best fits your child's abilities. They get you all set up and measured with all the bells and whistles, and special seats, handle bars, pedals, grips and such. a month or so..........your bicycle comes in AND are you ready?? Some of the kids get the bikes donated to them......meaning we get our bicycle for FREE!! The only promise you have to make is that you come each year to make sure the bike still fits your child properly, and if it needs adjustments, they will adjust it. If your child has outgrown his bike, they will replace it (again for Free) you just have to have taken good care of it, return it to them, they will refurbish it.......and give it to another child that needs it! (again for free!) Now tell me, how frickin' cool is that?!?!

Daniel got selected for a few reasons:

1) because he is almost 3 and has the ability to ride.
2) Because he was a "dance child" for the Dance marathon last month.
3) And partly because he has a really really good therapist, who takes good care of him when it comes to equipment.
4) Because he is just so damn cute! (my opinion only, and I can say it cause its OUR website!)

Daniel loves his new helmet so much that we had a hard time getting him to take it off so he ended up wearing it while walking in his Pony Walker today......

Wednesday, April 9, 2008

Photos.....Take A Gander

Here are some photos that I came across today while cleaning up the computer, and I wanted to share.

Daniel taking control of the remote and switching channels. A typical man.....always has to have the remote!

Me, my mom, and Lonnie. Just a few short months before my mom passed away in November 2007. God it sucks that she is gone. I miss her very, very much. I just want to lay my head on her lap and her "tickle" my face. She use to do this during my "breakdown" moments, which were happening more often than not! Even a couple weeks before she passed away I remember laying my head on her lap and telling her she better get better damn it! She didn't listen to me!
Here is my chubby-lumpkin of a grandson, Zachary. Don't you just want to squeeze those fat little cheeks?!

Another photo of all my children with my mom on her last birthday. I am so glad that each of my children got to experience having a grandma as awesome as my mom was. She touched each of their lives in so many different ways. She was a great person to talk to, she would listen and never give her opinion of what she thought unless you asked her too. She was all for letting you make your own mistakes and she never threw it in your face when you went back to her. I am just sad that Daniel probably won't be able to remember her as he was so young, but when she was around he was always laughing at her, she would tickle his tummy and he'd giggle uncontrollably......he knew his grandmother, and he loved her.

Remember that the 3-Day Breast Cancer walks are going to be happening all over the US. If you can, please donate and support me. If not me, that is fine just donate directly if you'd like. If you'd rather not donate online you can click here to download the form and mail in your donation. Don't let another person go through what my mom did. Don't let another person lose someone like I had to because of breast cancer. I will tell you first sucks beyond belief!

Tuesday, April 8, 2008

Hide and Go Seek

We finally figured out a way to motivate Daniel into getting more independent and walking around in his Pony walker. Well at least for a few days we have!!

Hide and Go Seek with Elmo!

We count to 10 and look the other way while the other one of us goes to help Elmo hide!

It is so cute to watch him scan the room(s) and then when he finds Elmo he gives off a little squeal and off he goes to "get" him. Then we start all over again!

This does a few things that I'm glad about.

1) He can scan and seek out things (does good for his eyes)

2) He gets the concept of "hiding"

3) It gets him to move independently to the object, and at a fast pace!

4) It makes him laugh and he is having fun like a "typical" child!

Monday, April 7, 2008

April Birthdays

You know you're old and your birthday is a "non-event" when everyone in the house is in bed and asleep at 9:30 at night!
Whew..........what party animals! :)
But some notable special days this month:
Uncle Jeff
Aunt Ann & Uncle Mike's 35 Anniversary
Cousin Maya
Cousin Michaela
Sister Brittany
Sister Victoria

Wednesday, April 2, 2008

A Pterodactyl?

Nothing is worse then sitting quietly feeding your child, when you hear from afar the wings of what you thought didn't exist anymore.....the mighty wings of a pterodactyl flapping in the air. Imagine the fear? OH MY GOSH! Me or my child?? My first instinct is to run for cover, but no, stop Melanie, what about Daniel? You are his protector, save your child.

Well let me tell you I was beyond startled to hear the flapping of wings in my house....WTFrick? I seriously panicked. Besides running for cover, I grabbed the phone to call Lonnie. I don't know what I expected him to do from 20 miles away, but I asked him to come home at lunch to capture this creature. There were some tears, I know this might sound stupid to some of you. But note, I have stated all the way along, I HATE BUGS-I HATE INSECTS.

I closed Daniel in the safety of his bedroom, and I went out to protect my house and my family. I could hear the wings flapping, I just couldn't locate where the sound was coming from. UNTIL I got divebombed.....and I am not ashamed to admit it.....I screamed and ducked down, and the words that exploded from my mouth, I cannot share here. Our little butterfly which was small in the box, had escaped and grown, oh so very LARGE!

Laugh if you must, but it is NOT funny when you are the one with the bug fear experiencing it. This will be the LAST time we will perform a butterfly/pterodactyl experiment in my house! We left the house within minutes (we really had to go to therapy, but I would have left anyways!) Lonnie came home (AFTER WORK) and caught it and it is now back in the box.
Our family and house are once again safe.