Sunday, April 27, 2008
Friday, April 25, 2008
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!!!!
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 general............by plane.........never done it! LOL
Wednesday, April 23, 2008
20 days until Daniel and part of the family get on a plane and fly to Florida for 7 wonderful, hopefully stress free days!
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:
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,
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.......
Daniel and Maeve
(Daniel just woke up and Maeve is as chipper as can be!)
Tuesday, April 22, 2008
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.
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
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
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
Daniel taking control of the remote and switching channels. A typical man.....always has to have the remote!
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 hand....it sucks beyond belief!
Tuesday, April 8, 2008
Monday, April 7, 2008
Wednesday, April 2, 2008
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.