Raising Money for Williams Walker

For those that don't know William has Cerebral Palsy, and in his case it causes problems moving his muscles, and makes it very difficult for him to move his muscles. His CP is a result of an injury at birth, and will not progress. But, there is no cure, and the best treatment is therapy, daily stretching and range of motion exercises to keep muscles from becomming too tight, and to allow him to develop other pathway in the brain to control his muscles.

William is showing some great improvements in trunk and head control. This is the basis for all body movement and essential before he can move to doing other things. We are so proud of his progress. Equipment for kids like William is a continuing need. And getting what is needed is not easy. Recently William just received his Stander, what he needs to be weight bearing on his legs so he can properly form his bones and digest his food. Also it will hold him in the correct posture to help with body positioning. The bad news about getting a stander is Medicaid will not cover a walker for 12 months after getting a stander, and private insurance doesn't cover this type of equipment at all. So we need to raise the funds ourselves so William can have a walker. You ask why we don't just wait 12 months. William is also showing a GREAT desire to MOVE. If we don't encourage this desire to MOVE it may just go away. Here's a short video where you can see William in a Walker just like the one we are ordering, and see how much he enjoys moving.

http://www.youtube.com/watch?v=Djtg8dqTtcw

He can interact with his brothers better, and play with toys, all of these are needed activities for a 2 year old. Please consider a small donation to assist William getting the equipment he needs. If everyone contributed $25-50 we would have the money needed after just 40-80 people.



Thank you for considering supporting William in his therapy needs.

PS: Any extra will be saved for the next equipment purchase; strictly for William's benefit, he will likely need next speech assistance devices for helping him communicate next, as his motor trouble also affects his speech.

Busy fun day

My head hits the pillow and I'm asleep. Busy fun day. Therapy, Zoo, naps, therapy, faith formation class for Tommy, swim for Micah, back to pick Tommy up, dinner, bed, clean house, cranial appt, store, feed William, pump, bed

Micah and Potty

We started teaching Micah about the potty over my Christmas break, and have had a few succeses, and he's holding it longer. Does really well on outings where he's back packed, and Tuesday this week he had a success on the big potty with the sitter, and a poop later in the afternoon.

William eating well

William ate 4 bowls of food Sunday. 3 big bowls yesterday and 3 today
already probably 4 by bed time. Nutrition was out yesterday and he
grew 1/2 inch in 2 weeks and gained 12 oz. A big gain after 1 month of
losses. Finally not throwing up every am and hardly ever during the day.

Lydia Conrad
Mommy to Tommy (3yr 3/06), William & Micah (1yr 3/08)

Ball pit

Micah Heart

Micah has a heart defect, Atrial Septal Defect, ASD of moderate size. Today when I changed his diaper before bed (and he was quite crabby at 6 earlier than normal) his legs had a slight off ness to the color, not pink, not blue, but not the color of baby legs. So I'll be calling the Heart Doctor tomorrow to take a look.

New Sitter

I interviewed a new sitter on Friday, and she seemed great over the phone interview, used to run her own daycare, loves children. Loves taking them out of the house, getting them outside to play.

She started on Monday, and they've been going out. She's taken them to 2 different malls in two days. Yeh!

The past 2 months or so....

I've only posted pictures, usually this happens when I'm having trouble processing what's been going on, or I'm struggling with things. Micah is more mobile and more demanding and William's been on roller coaster feeding problems, and Tommy wants attention too. All summed up it means not enough hand, and people to take care of all 3 kiddos. William doesn't eat as frequently as a newborn, but takes just as long to feed in time as a newborn. Slowness is the key, as if you push him too much he will gag and throw it all back up.

End of August we were 16lbs, 29 inches and got our feeding tube, intake for MDCP program, and waited to get help. MDCP is a process that's for sure, September I received the call we were approved for medical need for the program, and October 13th we did our overnight stay, and were on our way on the program, we had our intake with nursing the next day, and then I was promised the nurse would be there, and then one family emergency after excuse after excuse, and we never saw the nurse again. We had a few fill ins over the weeks we were with the agency, but they couldn't find us a nurse. We had a nurse for the weekend we needed for the cranial classes, and we setup switching to CDS attendant care. CDS is consumer directed services, it means I can hire grandparents, or anyone I find to care for William, (anyone but me and my husband that is). Then our attendant starts November 23rd. Our babysitter, has been just as overwhelmed as myself, with trying so patently different options on feeding William, this bottle, or that bottle, or this spoon or that one. Seems he's caught a cold and can't eat due to the mucous factor, and the feeling of that down his throat, he can't swallow food without gagging, so we end up on a week or so of tube feedings, and finally see our doctor to get a decongestant, and she can't prescribe one because it's not safe for under 2. He even gags on just mucous and throws up at random times. Then suddenly it's gone and he can eat everything he's suppose to during the day, and the attendant is able to feed him. We even begin to consider weaning down the night feeds so he will take more liquid during the day, but suddenly the congestion is back he won't eat for a day, and the feeding pump messes up that night and he gets next to nothing. And then no food again Monday, so Monday he spikes a fever just 101, so I have to give him fluids, we drop the tube, and then feed him dinner and drop it again for bed time. I set him up with a bag full. He was a slow eater during the day, but in the evening he even wanted to eat dinner with the family and had a bowl he ASKED FOR of pot roast potatoes and carrots. He did so well with it we called Grandma to brag. He finished up the night drinking an 8 oz bottle all by himself, while standing in Daddy's lap, yes he wanted to drink standing up. Yes there's a normal 21 month old in that body. One who wants to run and jump with his brothers, and tell grandma stories on the phone, one who wants to eat food with the rest of the family. Last weight check Wed before Thanksgiving he was 20lbs 10oz 32 inches. We're making our way onto the charts.

Anyway when our attendant starts our babysitter is out with a family emergency, and the attendant fills in for her; I find out friday after thanksgiving that our sitter won't be back, and we are interviewing new babysitters hoping to have one start soon.

Christmas

I'm really loving having my tree up early. We put the tree up Thanksgiving day, and I recruited those here at my house to help. It was the best thing I've done, it feels so good to have it up and ready to go, and to enjoy it for 15 extra days than I usually get to. It's just perfect this year. I placed it in the front window for the first time in this house. I've always wanted to have a beautiful tree in the window, and now I do. I love it both inside and out. The tree sing beautiful Christmas carols as the kids stair in wonder. The there is the constant sound of the command "no touch", or "out". Micah stairs in amazement at the different ornaments and points out all the cars and trucks and trains with great emotion and wonder at the new objects his first Christmas he remembers. Tommy wants to touch all the motion ornaments, and push the buttons, and make the train go.

Some days.....blog by Lydia

Just sometimes wishes I could quit, just for a day, not so I would miss out on all the special moments, the smiles, the trying so hard, but so just one day it wouldn't be a constant struggle to do simple things. Still searching for a new babysitter, but slightly jealous that the old one could just say one day I'm not going back, I don't want to struggle with feeding him anymore. I'm done. This is too hard.

Tommy learning about gun safety

Notice daddy's shoe.

Rob with the boys

Micah Tommy and William.

Shelly was always so sweet to the boys

William and Micah got CST at the Cranial Classes

I participated in the CST 1 class over the weekend so I could perform CST for William, instead of always having to go pay for therapy, also William and Micah participated in the classes. They were subjects in the Pedi's class.

William received CST Therapy Wednesday, Thursday night after class, Friday Night after class, 3 hrs in the pedi's class with 2 therapist on him Saturday, and Saturday Night (my practice), and 1 hr Sunday in the pedi's class with 2 therapists on him, and then Sunday night and Monday night. Then Monday and Tuesday he's been floppy when he is usually high tone. We're going to have to lower Williams dose of Valium medication due to him being floppy.

Just thought I would share.

Tatile stimulation during meal time

Here's a great OT activity! (OT = occupational therapy)

Art time

Tommy as batman

Robin and joker

William as joker

Joker