Friday, December 11, 2009

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.

Wednesday, December 9, 2009

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!

Wednesday, December 2, 2009

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.

Tuesday, December 1, 2009

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.

Friday, November 27, 2009

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

Wednesday, November 18, 2009

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.

Saturday, November 7, 2009

Tatile stimulation during meal time

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

Friday, November 6, 2009

Art time

Saturday, October 31, 2009

Tommy as batman

Robin and joker

William as joker

Wednesday, October 28, 2009

Joker

Saturday, September 26, 2009

Friday, September 11, 2009

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!!

Thursday, September 3, 2009

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

Thursday, August 27, 2009

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.

Thursday, August 20, 2009

William is silent aspiration

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

Sunday, August 16, 2009

Tommy got into Lydia's makeup

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

Robert Conrad

Wednesday, August 12, 2009

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

Monday, August 10, 2009

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

Tuesday, August 4, 2009

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.

Thursday, July 30, 2009

Yeh just got the call!

William has been approved by insurance for his first wheelchair!

Sunday, July 26, 2009

William and Micah

16.5 months

Saturday, July 25, 2009

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.

Sunday, July 19, 2009

Fresh baked bread!

Thursday, July 16, 2009

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

Wednesday, July 15, 2009

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

video

Micah swim test today

video

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!"

Tuesday, July 14, 2009

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.

Saturday, July 11, 2009

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....

Thursday, July 2, 2009

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!

Tuesday, June 30, 2009

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.

Wednesday, June 17, 2009

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.

Wednesday, May 27, 2009

Nana and All 5 Grandkids


CRW_9566 copywm.jpg, originally uploaded by conradzone.

Easter Sunday!

Wednesday, May 20, 2009

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...

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

Tuesday, May 19, 2009

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?

Monday, May 18, 2009

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!

Sunday, May 17, 2009

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!

Saturday, May 9, 2009

Ball pit

Now we need more balls

Friday, May 8, 2009

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

Sunday, May 3, 2009

Saturday, May 2, 2009

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

Wednesday, April 29, 2009

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.

Tuesday, April 28, 2009

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.

Wednesday, April 22, 2009

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.

Sunday, April 19, 2009

Bluebonnets 2009


3Brothers, originally uploaded by conradzone.

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

Monday, April 13, 2009

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.

Friday, April 10, 2009

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.

Wednesday, April 8, 2009

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.

Monday, April 6, 2009

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!

Thursday, March 19, 2009

Sunday, March 15, 2009

Yearly Checkups

Here's the stats for all you stat addicts:

Tommy (3 years)
Height: 38.5in 32%
Weight: 38lbs 4oz 85%
Head Circumference: 21in: 92%
Concerns: I had a concern about him acting crazy when it's been a while since he's eaten possibly concern for his blood sugar, and so she checked that and it was normal. She discussed what he was doing and everything was exactly as it should, she suggested teaching him his address and phone number, and stranger danger safety.

William (1 year)
Height: 29in 25.7% (Yeh! he's on the charts!)
Weight: 16lbs 0.05% (following the same curve of the chart, but off the bottom)
Head Circumference: 17in 0.55% (following the same curve of the chart, but off the bottom)
No suggestions with him, other than we were meeting with the nutritionist that afternoon, and we discussed the help and therapy he was getting and they were happy with that.

Micah (1 year) (he was plotted on the girl charts oops need to correct that with the doctor, so this means that the precentiles are a little high for him)
Height: 31in 95.86% (probably more like 85% on boy charts)
Weight: 20.94lbs 49.25% (probably more like 25% on boy charts)
Head Circumference: 18.5in 93.2% (probably more like 45% on boy charts)
Concerns/Directions: We had a concern about diaper rash and pee burn, and she suggested malox, so we're trying that, and she suggested getting rid of bottle and putting him fully on sippys, which we already did, and a few other developmental things, that I'm not sure I remember. It was a quick appointment, with no major issues or concerns, she was very happy wtih language and other development for him too.

Wednesday, March 11, 2009

William and Micah are ONE!



William Josiah, You are quite the child, I'm so glad you are here. You've taught me so much already. We've been through so many struggles already, and more to come. You have the determination to make it, and you will succeed. Here's a little of what you are doing now and what you are like: You are holding sit for several seconds to several minutes, you can follow simple directions and answer simple questions, You love to stand, and laugh and giggle, you listen so intently to all that's around you, you say hi to almost everyone, and chat with those around you. You light up when anyone pays any attention to you and you draw the light from the whole room when you do. You capture the heart of every therapist and all those that try to help you. You are so happy and content despite your struggles, You are ever watching all that's around you, and learning so much. Your name truly fits, you are Strong, and healed by God.

Micah Joe, You are a blessing from God as your name indicates. You have also taught me alot. You are patient, and inquisitive, and independent, yet vocal when you have a need or opinion. You are playful and happy. Here's a little of what you are doing: You are playing with your older brother, and following him where ever he goes. You are riding the scooter all by yourself, and trying to ride Tommy's tricycle. You are taking steps when you don't pay attention to how you are going to get there. You can crawl faster than lightening, and you try to say anything that those around you say. You are talking complete sentences, and letting us know your needs. You say, "Mama, I want ba-ba!" very clearly, along with "All done.", and "Hot.", "Hi.", "Hi there!", "Hi William", and other things that I can't think of right now. You love to be outside, and climb the play ground equipment by yourself (scaring mama).

Sunday, March 8, 2009

Happy Birthday Tommy


My Oldest baby is 3 today! I can't believe it. Wow how the last year has just flown by. Tommy's personality is really coming out in the last year. He's got such a tender heart. He love his brothers and those around him and love to play. He's an active guy and love to run and jump and slide. He's really enjoying having Micah chase him around, and playing with him, and he also enjoys giving William hugs and cuddles and seeing him smile.

Monday, March 2, 2009

Williams Eyes

William can answer basic questions with his eyes. I ask him where is piglet and where is a car having one on each side and he looks at the one I ask him about, and grins with a "uuuuhhhh!!!" Excited noise. I'm going to be asking ECI this week how can we expand on this and teach him things, alphabet, body parts, etc!

Monday, February 23, 2009

Micah walking and talking

Micah is making strides towards being a walker. He will hold a stand for several seconds and I was trying to show nana this at f
Gymboree and he took several steps forward to me with out holding on!! These were his first steps! He also copi g any noise you make and any word you say almost. I'll come ban later and list more of what he's been saying.

William talking.

Williams been trying more and more to talk and say some things. His words include mama, hi and hi there, but can be difficult to understand as mama is uhhuhh. Hi is very clear and hi there is hi with a second sylable. Hi gets so happy and glowing when he tries to talk.

We've been reAlly pushing 3 meals a dayvfor the last couple of days and he feels much heavier. I weighted him on the home scale and he was 18.6 lbs. If that is accurate (big if) that's 3 lbs in a month! I'm really excited about that!! I make his meals about 300 calories so in 2 meAls 4 oz each he's getting double the calories he gets in 30 oz he drinks a day!

Sunday, February 22, 2009

Pooh bear!

Thursday, February 19, 2009

I'm growing Mama

Look at this old post, and note the outfit William is wearing:

http://conradzone.blogspot.com/2008/04/look-mano-tubes.html

IMG_6244.JPG

Then Look at this picture:

39:365

Tuesday, February 17, 2009

William's Therapy


35:365, originally uploaded by conradzone.

Click this picture to find a link to more therapy pictures. Here she's working with him on something where he can touch the ground with his feet, and hold on with his hands.

1956 Mercury M100 Ford F100 For Sale

My husband is selling his Pride and Joy, so I had the privileges of taking pictures of it for the ad.

Saturday, February 14, 2009

Kissy Face

William that's right William! was making Kissy faces Friday. We were at Gymboree, and at the end of class Gymbo the clown on a stick give kisses to the kids and ways bye bye. And after William got his kiss he was making smooching noises several time. He also did it as we were leaving to go and I was giving him kisses, he did it too. He totally meant to and it was so great to see him participate so much. This is good for his Oral motor!!

Monday, February 9, 2009

Just have to Brag

Tommy who's not quite 3. Told the sitter Sunday evening that he needed to do his chores, and proceeded to on his own move the clothes from the washer to the dryer, and checked the lint trap! (He of course needs supervision so we make sure another sock event.)

Tuesday, February 3, 2009

Brothers!


33:365, originally uploaded by conradzone.

Monday, February 2, 2009

Tommy made the Midweek Reminder at our Church

Here's the story:

I can not tell you how excited I am that Discipleland and our new Take it Home program is going so well. After our first Sunday in Discipleland, I received notes from several parents telling me that their kids did not want to leave Discipleland that morning. That is always a good sign!! Every two weeks, the kids are given a new Bible verse to memorize at home with their family. On week two, little Tommy Conrad returned to Discipleland so excited!! He could not wait to tell me his Bible verse. Tommy is only a month away from being 3-years old and in his sweet little two-year old verbiage, he proudly recited his memory verse to me. It is so exciting to see children like Tommy so excited about learning God's Word!! Another great story is from the Biel household. On January 18th, the Biels participated in our first Take it Home: Family Devotions class. In the class, participants were given stickers that their children could put on a calendar for each day they completed their family devotion. The Biel kids were taking turns being the "sticker person" for the day. Karla told me it was great to see her kids were excited about this activity and would be sure and remind her and Kenny that it was time to do their devotion, especially when it was the day for him or her to be the sticker person. I can not tell you how it warms my heart to see little ones this excited about their spiritual journey. Each day is a new adventure with God. Just watching their excitement is enough lift my spirits and get me excited about my own journey. I am so blessed to be participating in this part of their journey!!

In Christ,
Pastor Shannon
The Reverend Shannon Grubbs
Associate Pastor to Children & Families

William Stretching


31:365, originally uploaded by conradzone.

Here William is stretching in his sleep. It's times like these his body moves freely, with no trouble. Glimpses into a life without a fight.

William Eyes


27:365, originally uploaded by conradzone.

Here's a picture where William isn't holding his eyes to the right. I really feel in this picture you can see the happy baby that he is. The baby that's not trying to fight his body do do everything he can do. The baby that's bright eyed and glows when someone talks to him.

Friday, January 30, 2009

Slow and Steady Wins the Race

This week we therapy was canceled Tuesday and Wednesday due to in climate weather. Then we had Physical Therapy on Thursday. Tommy gets to swing on the swing and jump on the trampoline at Therapy. Then we go on a walk around the building while William gets some CST. During our walk Tommy rode 2 alligators (elevators), and did some crawling down the hall with Micah chasing him.

William worked on his rolling, did some spinning, and some standing. He's making slow and steady improvements, and he tries so hard. We're trying to determine the perfect amount of therapy for William in this coming year, where he can make the most improvements while costing us the least amount of money in the process. Deductibles and out of pockets start over when we've just come out of the most expensive medical year ever, but who can put a value on a life so sweet and precious. One that has touched so many already. I just know that God has something special in mind for this little man, all of my little man, but it's so evident with William. So we plod on feeding him as often as we can and holding him at every opportunity, and helping him move his body when he's frustrated because he doesn't just want to lay on the ground and do nothing. He's showing more and more motivation each day that he wants to interact with him surrounding. If we hold him under his arms and help him walk or kick a ball he just lights up with a smile that touches everybody's heart. We go to a gymboree class on fridays and he loves seeing the other babies his age, and playing with them and watching them. We walk in the room and he glows. He tries to mouth the play balls, and roll on to his tummy to go after a toy. He shines when we do the freeze dance, and tries to tap the ground during parachute time when "we hear thunder", and the pitter patter of the rain. He recognized the repition of the class. If anyone want to share this experience with me they are welcome to come to a class with us, I've got two babies after all, and a 2nd set of hands to guide Micah and William through the class always helps. Most of the time Micah sits with the teacher during the class, and he love the interaction and plays peek-a-boo during parachute time.

Saturday, January 24, 2009

Jack


21:365, originally uploaded by conradzone.

Jack was over at our house to play Wednesday, and apparently he had a great time and can't wait to come back. We hope he'll come back by soon too. Tommy would love to play with him again soon.

Friday, January 23, 2009

Roughly 99 Gallons!

William and Micah are 317 days old, And William has been eating pumped milk, and just for hecks sake, I decided to see how much milk I've been pumping for him. He takes about 30 oz of milk a day, but I'm guessing I average pump about 40 oz a day more at the beginning and right now I've been just meeting his needs. So that's 40oz * 317 days = 12680oz, using google to convert oz to gallons (type "12680 oz to Gallons" in the search box) I get 99.06 Gallons! WOW!

Btw that's a savings of $2,443.00 at $0.19 an ounce for Neosure formula (1 can makes 85.5 oz at $16.49 a can)

or

Banked Breastmilk at $3 on ounce that would be $38,040 value for what he is actually receiving.

Thursday, January 22, 2009

Neurologist Appt

We had our Neurologist check up on this past Wednesday. William showed off all the new stuff he was doing. He on command looked at me with his eyes. He sat for a few seconds. He weighed in at 15lbs 4oz and was a Wopping 29" tall. He grew 3 inches in about month. We talked about his eyes, and he said that's normal for William's condition, and just a matter of lack of muscle control while trying to focus. We talked about his vision, and how if he continues to pull to the right after he's a year then we will need to talk to an eye doctor to see if there's something they can do to help him. Also, we talked about his tight hamstrings, and if the therapists can't stretch them then we may do botox, but that the therapists will know when. He was trilled with his progress. We also talked about his language skills and how he'll communicate in the future. That expressing and talking himself will be hard. He'll understand more than he'll be able to tell us, and that as his mother I will know his gestures better than others. He also asked what Micah was doing in his communication skills, so he could compare them. He was trilled William will say hi, and that he's sitting, and trying to roll, and holding his head up.

Saturday, January 17, 2009

William at Gymboree

We go to Gymboree play gym with the babies, during Tommy's nap.

Micah like's crawling on all the obsticals, hiding in tunnels and tents.

William loves the freeze dance, bouncing on any gym piece, and looking through tunnels really helps his eyes. And during our class I get one more hour of working with William and playing with him, kind of like an inexpensive therapy time for William, since he has to spend so much time just sitting in his seat looking around the room at home.

And Tommy can go to the open Gyms with either Just Mommy or with his brothers too. Tommy really loves it when he gets Tommy time (Just Mommy and Tommy) at Gymboree. He asks about it, and if it's been a while since we've been he'll ask to go.

Friday Morning we went to open gym, and at the end they do Gymbo clown stamps on feet, hands, and tummys. The big kids were all lined up for stamps and William was sitting with me a row behind the big kids. All the big kids got their stamps, and William was squirming like he wanted something. I told the teacher I think William wants a stamp, and she asked him and he made this "Ahhh!" sound like yes I do want a stamp, and got this big grin like he thought we'd never ask. So he got a Gymbo stamp on his hand and he smiled so proudly. He also smiled so proudly every time I repeated the story to friends at play group, and to Daddy and to Grandma. This is also one of the first time's I've seen him "ahead" of Micah, Micah was there, and was more interested in climbing and being active on the toys than in the Gymbo stamps, so he was paying no attention to everybody getting stamps.

Monday, January 12, 2009

Birthdays

My hubby's birthday is Tuesday the 13th...Happy Birthday Dear, to the man that makes it all work, that supports me in everything. I Love you!

My wonderful hubby threw me a surprise party for my birthday which is Wednesday. It was so nice to have friends and family there just for me. I was so touched! Thank you everybody who came, decorated, or helped in any way.

I also had to mention that my In-Law's got us a new car for our birthdays, an older Ford Expedition! I'm so excited to have a car that our whole family fits in! I'll have to take a picture of inside and out and post it here so everyone can see!

Sunday, January 11, 2009

Micah and Tommy Playing


IMG_8764copy.jpg, originally uploaded by conradzone.

This past Monday Micah and Tommy really played together!!! They played for about 45 minutes with this shawl baby carrier that I have. They played peek-a-boo, Pull Micah, and just plain playing together. Both boys had a blast.

Tuesday, January 6, 2009

I love Courtney!

Monday, January 5, 2009

Micah Splashing in the tub

We love bath time!

Canon Ball

Sunday, January 4, 2009

William with Christmas Lights


IMG_8274copy2.jpg, originally uploaded by conradzone.

Yes his has his Christmas stocking on up to his waist.

William and everybody else had a head cold over the Christmas break. William went from eating solids every day 1-3 times a day, to completely rejecting solids. The drainage down his throat was just too much for him, he would gag at every bite, so instead of having a bad experience, we stopped solids all together. He was eating 3-4 bottles a day while he was sick and on the worst day he at one in the morning, nothing till late in the evening, then he drank 8 oz and an hour later another 8 oz. His weight was 2lbs higher than October right before he got sick.

Just the last 3 days he's started eating solids again and taking mostly the same amount of milk.

In talking with his therapist his outlook for the future. His PT believes he'll be much stabler sitting up by his birthday in just a few months. He'll still have some trouble, but he's improving. Also they believe he will find a way as he understands more to get to toys and things he wants. Also, the therapist have told us that it's good to find others that can feed him, because later it will become a trust thing who he lets feed him, so it's good to have a number of people feed him now. This includes therapists, babysitters, and grandparents.

I hope to update the progress video again soon. I've been bad at updating it.

Saturday, January 3, 2009

Micah


IMG_8245COPY.jpg, originally uploaded by conradzone.

I'm not sure if I've mentioned, but Micah has 2 teeth now, you can clearly see them in this picture.

Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."