My baby forever and ever

I asked Tommy if he could be my baby forever and ever he told "I can't I have to grow up and be a Train driver!"

I was in tears today...

I called around to insurance, and Home Health care providers trying to get someone who could provide better care for William, and also some help with his care, as I estimate I spend 4-6 hours a day feeding him, probably should be more, and he can eat so it's not right to do surgery for him just because I don't have the time. I was in tears when I reached a pediatric home health provider after 20+ minutes on the phone with insurance only to find a provider that doesn't do pediatrics. The talked to me and referred me to a few providers that do pediatrics. I called the first one, told them our story about William eating 2oz in 9.5 hours, and that we need some assistance with his care but aren't sure how to get insurance to cover it. They said they would help and took my information. I was in tears while giving them my information because I finally found someone who could help. We talked and they are going to ask for up to 70 hours a week of PDN (private duty nursing) for William, and gave me what I needed to have my doctor fax to them. Orders for up to 70 hours, medical information, letter of medical necessity.

Tommy Reading

We recently checked out some train books from the library, and they've become part of bed time routine. One of the book has been simple enough that Tommy's been reading it from the first time we opened it. It's called "This Train", He loves it and has been so proud to show everyone how he can read every word! And he does a GREAT JOB!

Frustration with Back-Up Childcare

I took the kiddos to the drop in child care place on Thursday because our beloved sitter, and WE DO LOVE HER TONS!!! Was sick, I'm so sad she was sick! And Tommy had problems with behavior at the drop in...and hardly ever does with the normal arrangements :(. And William had ONE oz of bottle in the morning, and about ONE oz of food at noon :(, and a cracker in the afternoon! Then they dropped the bottle at the 4:30 feeding, and based on how he cried on the way home I'm sure he had NONE of that bottle. I called the Home Health people, the pediatrician, and our speech lady, to find if there was anything we could do to provide him better care on the days I work and have to use back up arrangements as it's not acceptable for him to eat only an ounce of food in the 9.5 hours I was gone from 7:30am - 5pm.

Home health gave us the name of a program we may qualify for MDCP - Medically Dependent Children's Program. And then the name of a person to call about doing one over night stay in a Nursing Home so that we can jump to the front of the line in the program. They are apparently the only ones that cover assistance and resbite care programs for children based on the only the child's income, and Medical Need.

Micah's new Diagnosis

Micah had a Heart Murmur at his last check up, and as such it is normal for them to refer to a cardiologist for review testing to verify if the murmur indicates anything significant. At the Cardiologist they found a Moderate sized Atrial Septal Defect (ASD).

At about 3 years of age findings indicate if the defect will be large enough to require closure, ore small enough to never need closure. At this point there is no required restriction or precautions and they want to follow up in a year.

The Road Less Traveled...

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveller, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference

...Robert Frost

The last 3 lines say it all....

William eating

William ate Oatmeal, and tortillas and cheese yesterday
Today he had some pees and pork roast
He's wanting to have what everybody else is eating, he's taking bites and chewing his food, occasionally he looses it, but if you poke it back in he eventually gets it and swallows. This is GREAT progress for him! He's also making more noises, and different noises (great progression towards speech!)
I'm excited what this last week has brought for him!

He's also trying to crawl, following commands about which arm to move, wanting to crawl and move.

He loves dancing with Tommy, and floating in the water of the pool, and joining right in with his brothers!

Train Ride

We took the Heartland express to OKC from Ft Worth, it was fun for most. Both Tommy and Micah are big train lovers, and W's seems to love trains too. Micah will look at books for a long time especially if the book has any trains in it. He loves both books and trains. While in OKC we went to a minor league Base Ball Game, and White Water where both Tommy and Micah loved the water. William liked floating in the water too, but also took a nap in the stroller in the shade while we were there too.

Unfortunately after the trip Rob woke up Monday morning unable to get out of bed due to his back pain. He spent the week in bed, and riding laying down in the expedition to the doctor for some pain meds, then started to feel better after a steroid shot on Friday. We went for a consult with the surgeon Today, who's not recommending anything till after a fresh MRI, but based on his symptoms may need a diskectomy sp?.

Wednesday last week we met with the equipment guy and decided on a wheelchair for William, and picked colors, black and red, and did measurements. We hope to see the equipment sometime in August or September (after insurance approval, ordering, building, assembly, and delivery).

Micah is in his third week of swim lessons and doing great! He's jumping into the pool and swimming, but still needs to get more comfortable in a float to graduate.

8 appointments in one day....man I must be crazy...

ECI OT and Nutrition for William
PT and CST for William
CST for Tommy
Chiro for Myself and Micah
and the Dentist for myself this morning
Oh and Lunch with just HUBBY AND ME:) because we also had Resbite service here today.
Oh I also forgot Micah's swim lesson thanks to my mom.

Just slightly staying busy....

15 month Well Check

Micah:
Height: 32.5" 96%
Weight: 22# 13oz 51%
Head Circum: 18.5 81%
Next Appt 2yr

William:
Height: 31" 48%!!!!!!!
Weight: 16# 13oz 0.02%
Head Circum: 17.5 2%
Next Appt 18mo

William we changed his medication to one that didn't have splenda in it. This Pedi doesn't ever prescribe anything with artificial sweeteners, and won't let the reps leave samples in her office. It's processed through the liver, and can cause liver failure. She firmly believes children should NEVER have artificial sweeteners. Especially a child already on medication processed through the liver. She referred me to http://www.suepalmer.co.uk/toxic.php if more information was needed, and the book on Toxic Child.

She also prescribed William a pediatric Manual Wheelchair, we meet with the rep next wednesday to place our order!! The best pictures are in this catelog: of what we are looking at: http://www.ottobock.ca/cps/rde/xbcr/ob_us_en/04040502.1C-TherapistGuideV2.pdf They also mentioned something like this: http://shopping.msn.com/ImageViewer.aspx?mcatId=4796&dpid=7&itemid=1009135218&hsv=HDs2MFMNx%2bk%3d, but it would have the similar supports seen in the Kimba in the other magazine.

Nana and All 5 Grandkids

CRW_9566 copywm.jpg, originally uploaded by conradzone.

Easter Sunday!

Tommy-ism

Tommy skinned his knee, and Rob asked him if he needed mommy to kiss it and make it feel better, to which he said "No, that doesn't help, God will make it better"

The faith of a small child....

I love that child!

I sat by the lake and looked at the sky...

I sat by the lake and looked at the sky..., originally uploaded by conradzone.

and as I looked a fly when by. (a quote from one of our favorite books).

Cutting back on the Medicine

I've been able recently to cut back on the Diazepam that I've been giving William (we also started reflux meds around the same time a couple of weeks ago).  He was at 2.0mg 3x a day, and after we started the reflux meds I cut back to 1.7, then 1.5, and now yesterday we did 1.5 2x a day and I didn't give the 3rd dose because he still looked great!  I'm probably going to cut it back even further to 1.2. He generally seems more awake, interactive, and moving more, also with him rolling over.  Also, he's still napping, he's hungrier (that's a good thing), he's still happy and smiling most of the time.  I remember before he started the medication he was very uncomfortable all the time, it wasn't till after the medicine he started smiling. 

Last night William was playing with my hair and grabbing it, I'd release his hand and he would immediately do it again with a smirk on his face.  I need to setup some net of toys for him to play under with things he can grasp like hair or beads so he has a spot to play. 

I was thinking maybe a foam mat on the bottom (like memory foam) with PVC pipes around it going up to a net/plexi glass above with holes in it and toys tied hanging from that, some plastic hair, scarves, toys for him that are easy to grasp, some beads.  Anybody have on old bed top liner/pillow top that they are getting rid of?

Micah cheesing for the camera!

CRW_9779wm.jpg, originally uploaded by conradzone.

Ball Pit

CRW_9782colorwm.jpg, originally uploaded by conradzone.

Playing in the Ball pit!

CRW_9784wm.jpg, originally uploaded by conradzone.

Here's William's chance to play in the ball pit. He did enjoy it, I just love the colors in this picture!

William just ROLLED OVER!!!!

William just Rolled over for the first time, it wasn't a flop, as he's so great at doing it was a true roll!!! He was laying on the couch next to Rob and talking up a storm, and rolled to his right side!

Ball pit

Now we need more balls

Hangin with Deuce

Robert Conrad Southwest Party Factory, LLC. dba: Party America Frisco 3333 Preston Road Suite 1200 Frisco, TX 75035 972-668-1961