William PT therapy

Here's William during his PT therapy session, holding a sit for several minutes. This is a huge accomplishment.

High seas VBS 2010

http://www.youtube.com/watch?v=Ip2jkJBs59I

Lydia Conrad
Lydia@conradzone.com

Fridge DJ LeapFrog

I just got some switches for William and he loves them, with them I also got some battery interrupters, but then noticed a toy we already LeapFrog Fridge DJ had modified for a switch was $66 modified 19.95 on amazon with free shipping if you have prime shipping.  I took the toy apart and modified it with part of the battery interrupter for free, I did have to solder some parts inside the toy to get it to work where the switch pushes the button instead of just using the battery interrupter.

Can't believe it's $45 EXTRA to purchase a toy already modified...

William's been sick then well then sick

April after I was laid off William caught a stomach bug, and ended up in the hospital dehydrated, then he got better gained 2-3 lbs, then caught a really bad cold and ended up back in the hosptial with pnemonia, then we were discharged, and had a sick nurse, and caught another cold, had bronchitis 2 weeks later and almost back in the hospital, but were able to treat it at home and 2 and half weeks later he's finally eating again and doing well, and gaining weight again.

Sorry Dog was found

Yes the dog was found...sorry I haven't posted sooner. Animal services showed up at our door at 8pm and said they had him at the shelter and had just scanned his chip. Please CHIP your dogs!

Dog Missing

IMG_2524, originally uploaded by conradzone.

Our dog is missing Please help us find him!

Prayer Quilts

Picked up prayer quilts from a church prayer quilt ministry, the kids love them. Micah picked trucks, William picked race cars, and Tommy picked an I-Spy Quilt.

The quilts have strings on them you can say a prayer and tie a knot in to have prayers tied into the quilt just for them, so they can wrap themselves in prayers.

Micah Conrad Heart Update

I've scheduled appointments with the heart surgeons (2) and another cardiologist for consults:

We meet with the 2nd cardiologist Friday Dr Fryer

We meet with Dr Eric Mendeloff the Surgeon at Medical City on Friday April 30th

We meet with Dr Vincent Tam Surgeon with Cooks Children's in FW on May 12th

Found out Micah with need Heart Surgery

Micah (25 mo) was diagnosed with an ASD Atrial Septal Defect (June 2009 at 15 months) (hole between the top two chambers of the heart).  Congenital defect.  We were told the protocol is to wait for a year to check it again and see if it gets smaller.  So we waited almost a year, but went for follow up early, due to my job loss.  Well size hasn't changed it's a significant defect, and there's no urgency to repair it, but it will need repair (protocol online was before school starts at 5), and recommendation is sooner rather than later due to insurance situation.    Basically with his defect he would have significant reduction in his life expectancy, and would get to a point as a teen where he would have trouble doing things he used to.  His life expectancy for his generation is about 84 doc said, and doc's projection with defect untreated would be about 50.  Defect was clearly visible on the Eco and measured about 8.4 mm or .84 cm in size.  The heart is 1.5 times the size of a 2 year old fist, about the size of a small apple? little larger than a cutie orange. 

Is he all there?

They've never been in this world of mine. They are trying to at some level grasp the impact of this to my life, not in their defense, but they are trying to understand something unfathomably to them. So much of the intelligence of a child is based on what motor skills they can do at what age, but I can see the intelligence waiting inside to get out, without a way to express its self because he tries so hard to tell the muscles to do exactly what you and I tell our muscles to do, only they just don't do it. It's not because the brain is broken, but something in the middle. But like You said we are all broken. A glimmer of the eye can express a 1000 words with one look, but you have to be looking and listening to hear it. I hear it everyday, and I try to explain to those that ask exactly what I see, so maybe they will stop and see it. Maybe with their own children who are not as broken they will stop and see it too.

Thank You!

Thank you doesn't begin to even cover it. I've shed several tears of joy over how blessed we are to have raised all the money for William's walker in almost exactly ONE month. Thank you so much for coming to our support so quickly. So far we've raise 2070, $400 of which people have given me cash or check so it doesn't show up on the ticker. I called the equipment company and the amount for the walker come out to with discount to $1613. Half of which we had to put down up front for the order to be placed. I'm happy to report that we've placed the order and are awaiting the arrival of our equipment We had to put $807 down, and we had a almost $300 credit from when we ordered the wheelchair so we only ended up putting aprox $500 down. I'm opening a special account just for William's fund raising, and this account will go only for William's equipment purchases. This money will directly benefit William and his equipment. Next on our list is some speech equipment to help him with communication. We are looking at getting him 2 buttons so he can choose between 2 items and let us know his desires. These are another item not often covered by insurance. We've also barrowed a button in the past to try out and he does well with them. Unfortunately we can only barrow these items for a short time before other children need them, or they have to be returned.

Thank you so much for your support, and if you wish to contribute further I'm leaving the chip in wigit on the blog for you to click and contribute.

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

Tommy and nana at octoberfest

Nutrition was out today

William grew another INCH in a WEEK, he's now 31 inches and 19#8oz YEH! Growth Curve here we come!

Jumping for Joy!

Just got word that William was approved for MDCP (TX State Program Medically Dependent Children's Program) based on medical need, and he gets to jump to the front of the line! A budget of 29k for him means 18 hrs of nursing services a week!!! YEH!!! RELIEF WILL COME SOON!!

All fitted in!

Is the angle of knees right?

Fitting feet with short legs.

A part is on order but here's how we fixed it while waiting.

Look dad new wheels

Fits through 24" door

Our new chair!

Name details

Wheelchair fitting

Williams new chair

They called and said it was ready Tuesday, so I asked if they could
send a picture. Isn't it beautiful! We go to pick it up next Wednesday.

William is silent aspiration

William is silent aspirating thin liquids, we now need to thicken his bottles.

Tommy got into Lydia's makeup

He told me that he is beautiful after he did this. Makes a Daddy proud.

Robert Conrad

Sigh....MDCP

I met with MDCP today about getting William in their program in Texas.  And they gave me the impression they didn't know if he would qualify because he didn't have a medical need, because he doesn't have trach, or cath, or g-tube, he doesn't have a needs for skilled care.  And she repeatedly told me that swallowing disfunction isn't a medical condition, to call her and let her know if he gets a g-tube and gets feeding every day.  

Also, I talked to the pediatrician about williams feeding problem and how he's at the base of the chart, and how he can eat everyday, but that he has bad days, but doesn't have the resources because of his low weight and high tone to make it through a few days of not eating.  And that I'd like to consider getting NG feedings on those days.  She said that I needed to talk to the GI doctor about those concerns.  I just wanted to cry because that mean more conversations and appointments where we aren't taking care/feeding of william, but I called the GI doctor, and he called me back in about an hour (I was so thrilled to hear back so quickly from him), I told him how well William is doing, but also about how bad the bad days can be and that I would like something to help him on those days because I feel those are why he's not thriving better.   And how the therapist are asking for a swallow study since the last time he had one was as a newborn. We also talked about doing NG feedings as a crutch for the bad days so we wouldn't have to do a g-tube.   He agreed and said he was on duty in the hospital next thursday, so that we could have an appointment for him next thursday and then plan to admit him to the hospital after that appointment for NG training and also for testing (swallow study and maybe upper GI).  

--
Lydia Conrad
http://conradzone.blogspot.com

Tommy and VBS

I asked Tommy what he learned at VBS. He said he learned to play on
the park and he learned to sing and dance sit and be quiet and not to
hit other children and not to hurt others. And not to do anything.

Lydia Conrad
Mommy to Tommy (3yr 3/06), William & Micah (1yr 3/08)
http://conradzone.blogspot.com

Found a book shelf widget

So "check out" our favorite library book on the Left hand side of the blog on our bookshelf!

MDCP

I'm not sure if I posted an update, but we meet with MDCP to find out if we qualify on Wednesday the 12th (NEXT WEEK)! Hoping to get more information about staying the overnight stay in the nursing home so we can jump to the front of the line. MDCP provides respite services for Medically Fragile children. Some were saying that they got 30-40 hrs a week, at this point I'm just wanting 5hrs. MORE would be a BLESSING! But I just want anything at this point!

Nursing

I called nursing to check status, and they are processing, and contacting UHC to find out the what they will approve.

William napping at the Zoo

Tommy and Robert by the piggy at the Dallas zoo.

Yeh just got the call!

William has been approved by insurance for his first wheelchair!

William and Micah

16.5 months

Tommy, what did you do today? (Last Friday)

I played at mommy's friends house.
I throw sand.
I throw sand at everybody else.
I be good al the times.
I went there and said good bye and went home.
Throw sand.
I ate an orange.

Fresh baked bread!

A friend sent me a great link for our home schooling

This link has a great list of what we are trying to do for home schooling and things we are doing with Tommy (now) and the boys (slightly now but more later). If you ever need ideas for books for presents there's a great list on this page and as of now all I have is the online ones. Now to figure out how to get outside even more!

http://amblesideonline.org/00.shtml

Micah

http://www.youtube.com/watch?v=nf29VIms284

Lydia Conrad
Mommy to Tommy (3yr 3/06), William & Micah (1yr 3/08)
Lydia@conradzone.com
http://conradzone.blogspot.com

Trouble on the tracks!

as Read by Tommy Conrad!

Train with No name

tommys new book

Micah swimming full video

Note the crying was just an act for mommy to get him out of the water.

MDCP

I called the MDCP people today to see about the Money follow the person option, and they assigned me a case worker and said I should hear from the case worker in 2-3 weeks.

Better clip of Micah swim test today

Micah swim test today

Micah was babbling in the back seat

I heard him say "William, open up, AWhhh" This is often what we tell William when we're trying to feed him.

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

Watching baseball with Daisy

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

Micah at the Mall Playground

Couple of recipes I made

I made these tonight going for high calorie as William has trouble gaining weight:

Avocado Pinto Benas

3 avocados medium
1/2 cup EVOO Extra Virgin Olive Oil
1 cup Pinto Beans Cooked boiled with bacon grease and salt

Makes 16 1 oz Servings
Estimated Calories per oz: 100

Butternut Squash

3 Tbsp Brown Sugar
1 8oz Cream Cheese
1 1/2 cup Steamed Squash

Makes 16 1 oz Servings
Estimated Calories per oz: 68

Anything over 20 calories per oz is good as Breastmilk is 20 calories per oz.
--
Mommy to Tommy 2 yrs 3/2006 + William and Micah 3/2008
http://www.conradzone.com

William Follow up at Gastro Doc

We went to the gastro doc today, and he said to keep doing the new medication for a week and see how it works, and to call him on May 11th, and if it's not helping they they will try a different medication, possibly one that does more gastro emptying.

Tommy's School

Tommy's been having fun at school. They said he's been a big helper, and very responsible. He really enjoys it.

Eye Doctor

We went to the eye doctor for William today. His eyes pull to the right, and I wanted to make sure we were doing everything we could be doing. He examined him, dilated his eyes, and examined the back of his eyes. Everything is normal for his condition. He wants to see him back again in 6 months. At this point all he can recommend is additional testing at the eye place in downtown...forgive me the name slips my mind at this time.

EGD Results

EGD Results showed reflux. We've started him on reflux medication. He's still not feeling well.

William had an EGD today.

They put him to sleep and then run a scope down his throat, take pictures and biopsies of his throat, stomach lower stomach and intestines. He tolerated it well, but was very stiff afterward. Everything looked normal, but we'll get the testing results in about a week.

Tommy Starts School on Monday

Tommy starts school on Monday. There will be 4 kids in his class 2 boys and 2 girls with 2 teachers. I'm excited! He will go Monday and Wednesday from 9:30-12:30.

Bluebonnets 2009

3Brothers, originally uploaded by conradzone.

Blue bonnets are looking Great. Micah is entertaining himself, and Tommy is loving on William!

Dr Visit today

Tommy got to go to the res-bit program at his school today while we went to the GI doctor's appointment.

Dr looked at William and was very good with him, made him smile and treated him like any normal kid. We'll have to do a scope thingy to check his stomach, throat, and upper intestines to see if there is any problems. Since he's going to have to be out anyway for the GI thingy, were going to do an MRI on him since he's out anyway.

On another note we noticed Micah now has 7 teeth and is working on number 8 (2 more lower teeth.) He's also crusing the furnature a little more librally (ie holding on even less, and walking about 3/4 the way across the room now. Also he finds any loose items and they suddenly become crusing toys to push around the room (ie chairs at the doctors office).

Oh and Tommy this evening while I was cooking dinner decided I was a bad Girl and had to stand in timeout. So I stood there like a good girl (trying to be a good example) while daddy pleaded with Tommy to let me out of timeout so I could cook dinner.

After dinner Tommy went with me to get my tire hole looked at on my car. We put air in it and headed to discount tire. They checked it, and found a nail that had damaged the side wall, so they put the donut tire on because they didn't have any used tires that we could put on (and it was closing time when we pulled up). We'll call them tomorrow to see if they have any used tires.

BTW .... Teeth

William now had 2 teeth. He just got another one today, he got the first one just after his birthday party.

Micah has 6 (4 on top and 2 on bottom). He got 2 just after thanksgiving, and 3 after christmas, and 1 he's been working on for a while.

Better Video of William Laughing

Off to feed william another bottle.

William Detailed Update.

Equipment:

http://www.showeryourbaby.com/cochbysapr.html

ECI brought this chair by and I really like it, it's a little big for us still and he can still fall over it in, but it's much better than previous options. Also, our ECI told us that April is a great time to apply for equipment because it may take a while to be approved, and then by the time it's approved we'll have met our out of pocket and deductible etc, so what do I need? I'm looking at a kid kart special needs stoller possibly, something that we can take to family's houses so William can interact with others and participate sitting up. With him sitting in the chair more and being engaged with us, he's making more noises and trying to talk and even giggling (see the video below).

Nutritionist:
The nutritionist came by again today. Wiliam was 16lbs 11oz (up 11 oz from last time) This was a GOOD gain for the time period especially with him being sick and not eating well for most of the time. She's coming once a month till we get William back on the growth charts. She calculated that my avocado salad with honey mustard dressing and sesame seeds that I made William in the food processor is 100 calories an ounce. He needs about 1000 calories a day, and he gets between 600-900 from milk and oil we feed him. He gets oil 2-3 times a day (1 tbs with a dash of honey for flavor). Then he gets 2-3 8-10 oz bottles.

Gastro Doc:
Williams had some symptoms of reflux lately, arching, spitting up if laid down after eating, a puddle forming under his head if he's laid down, throwing up if the Diazepam doze is too low. Swallowing at random times. So we have an appointment on Monday to see the doctor that the Nutritionist recommended.

Eye Doctor:
William's vision has always pulled to the right pretty bad, and we've thought that we should take him to the eye doctor for a while, And his right eye seems to be the weaker eye, especially when he's sleepy. As well as he still has the Nastagnis(sp?) shaking of his eyes as he focuses (a normal symptom of the mediation he is on). So I made an appointment for Tuesday the 28th with a pediatric ophthalmologist.

Handicap Sticker:
I'm considering asking the doctors for a handicap sticker as if I'm out with all 3 kids it can be kinda tricky getting them all out together especially now that William has outgrown his baby car seat.

Bad Bad Blogger....sorry we've been having fun and I haven't been sharing!

First:

William is Laughing!
We didn't capture the whole out giggle, but you get the idea!

Micah is taking steps, and really trying to communicate! (Insert pictures here...ya...bad mommy no pictures to put here...mainly because he's always saying "UP" to me and making me hold him and it's hard to hold a camera while holding a baby.

Tommy's going to start a preschool soon 2 days a week 6 hrs a week. 9:30-12:30 Monday and Wednesday. It's called the CC Relief Nursery, for families with more than 2 stressors to give us a break and positive role modeling for Tommy. Also they do breakfast, lunch, and snack, and better yet ITS FREE! They have 2 teachers and 2 volunteers for 8 kids!! Pray they get volunteers soon and as soon as they do they can start having classes monday and wednesday!
Also, Tommy is loving swimming and getting outside again! We've had a few warmer days and it's great. He helped his dad mow with the bubble mower, and they they both took a swim afterwards. Along with playing in the creek for hours (sorry papa, we got our cool new shoes all muddy, but mommy washed them) with daddy and having fun!