Yawn!

Yawn! Color, originally uploaded by conradzone.

Here's Sydney Ann at 5 days old.

Announcing Sydney Ann

Sydney Ann joined us Feb 17th after a speedy labor born in the water into her mother's arms at 10:29 am a mere 2 hours after labor began. She's such a joy and adds a little pink to all the blue. She was 9 lbs and 22 1/2 inches.

Little sister

Here's a video of Tommy singing to his little sister :).

Little sister

http://www.youtube.com/watch?v=Gy7bPo9kWpk

He doesn't want to put her down

My boys with my new little girl.

Tommy pulling a game up for William

Tommy pulling a game up for William, originally uploaded by conradzone.

William Reading my Email

William Reading my Email, originally uploaded by conradzone.

William in Gait Trainer

Thanks Nana for our Cards!

Thanks Nana for our Cards!, originally uploaded by conradzone.

Thank you Nana Papa for the Card

Thank you Nana Papa for the Card, originally uploaded by conradzone.

The boys got Valentines day cards today from Nana and Papa, and they each loved them.

Natasha did a wonderful Job

lydia1, originally uploaded by natashahance.

Natasha Hance of NHance Photography, did a wonderful job taking some maternity shots of me so I could capture this pregnancy. They came out just stunning. You should be able to click on this photo to see a few more.

Ice cream for daddy's birthday.

HAPPY BIRTHDAY ROBERT!

10 years ago today I met this wonderful guy celebrating his birthday at a bar and it changed my life. I'm so glad you introduced yourself to me and asked me to dance. You changed my life permanently for the better. Happy Birthday I love you! I'm so glad to have you as my dance partner through this dance called life. Sorry sometimes I try to lead. You are a much better lead that me, and I've always had two left feet.

Baby 4

Daddy entertainment at the mavericks game.

William happy to be driving the car while parked in the drive way.

Baby #4

Where to even begin. This pregnancy has flow by, I've been so wrapped up in dealing with William and Micah's health issues I haven't had much chance to focus on this baby, but the stronger and stronger contractions that I keep getting as delivery draws nearer and nearer and reminding me that this baby will be here soon. The pregnancy has been a breeze, the time has flown by, my blood pressure had been normal, all tests have been normal, and visits with the midwife a breeze too, and movement has been often, and often visible from across the room. I wish I'd have has some sort of baby shower to celebrate this baby, but I'm thinking maybe it was better to save that opportunity for when baby is here and everyone can celebrate his or her safe arrival. I'm 35 weeks now and that gives me roughly 2-8 more weeks to go.

I'm still wondering how things will play out for the birth, will we have the right person to take care of William when it's time. Or also the right person for Micah and Tommy?

Will I be able to get Pictures done before baby arrives.

Then I recently got my baby blankets, and clothes down from the attic to realize that I have one bin that is 0-12 months clothes left, back at the beginning of 2010 I cleaned house had a garage sale and donated almost all of my baby clothes. I have one coming home outfit for a boy and one for a girl, and then we will see how it goes.

I'm nervous and excited, excited to hold a small tiny creature again, my boys are all so big, and nervous to learn where this new baby will fit in our family. I'm sure our hearts will grow, and there will be new room created. I'm hoping this transition will be smoother than the last one, when Micah and William joined. I'm praying for peace, and comfort, and a healthy baby.

I've found myself craving some of the things I enjoyed at the end of my last pregnancy, a Whole Foods Vitamin C water I remember fondly drinking it during my labor slightly frozen. I'm also praying my husband is able to get his business trip safely completed while baby stays tucked inside.

Neurology, Sickness

Willam's neurologist called to update us on the re-read of the MRI that was done at Children's Dallas. The Neurological damage that was seen after his birth is still there, and it's still significant, both sides of his brain, and also his cerebellum.

From Wikipedia:
The cerebellum (Latin for little brain) is a region of the brain that plays an important role in motor control. It is also involved in some cognitive functions such as attention and language, and probably in some emotional functions such as regulating fear and pleasure responses.[1] Its movement-related functions are the most clearly understood, however. The cerebellum does not initiate movement, but it contributes to coordination, precision, and accurate timing. It receives input from sensory systems and from other parts of the brain and spinal cord, and integrates these inputs to fine tune motor activity.[2] Because of this fine-tuning function, damage to the cerebellum does not cause paralysis, but instead produces disorders in fine movement, equilibrium, posture, and motor learning.[2]

She also continued to mention how she couldn't support us not starting him on seizure medication and suggested that we find a new neurologist that would support us in this regard.

I called our pediatrician about this and she also suggested another neurologist that could possibly support us in pursuing our options regarding seizure treatment. We are working with our pediatrician, on improving his nutrition to raise the seizure threshold. We seem to have some success so far, we've gone from seizures once a week in November, and beginning of December to spreading out in December to once every two weeks at the end of December and hopefully back to once a month in January.

I have to admit it's hard looking at him at this point at 2 almost 3 and seeing exactly what he can't do, how he can't participate like his brothers, like his twin. With the constant reminder every day that Micah talks to us, and tells us stories, but William is only able to grunt and smile. But at the same time it's encouraging to see his likes and dislikes and how he communicates those to us. He still tries so hard, you can tell when he wants up by how he hold his hands and tries to lift his head, or if his unhappy with his brothers for how they were too rough, or how he smiles at them when they talk so sweet to him.

Then what makes it even harder is to see him sick, laying down no desire to move, like the spark is gone from his eyes. Struggling for a cough, struggling to breath, struggling to move a single muscle in his body. What's a simple cold for you or I (medina) virus in this case, similar to the flu, or RSV, has wiped him out for 2-3+ weeks. Oxygen Saturation low, coughing fits at night, breathing treatments, sleep schedule all messed up, sleeping till noon every day, unable to eat anything, trouble with liquids even via feeding tube, too much and he's vomiting mucous, too little and he's feverish and dehydrated. A big reminder of why we have to be careful of exposure to sick people. He very easily could have been in the hospital with this one, if it wasn't for the wonderful night nurses giving him fluids, keeping him hydrated, and giving breathing treatments, suctioning, and CPT. For the last two weeks every 3-4 hours at night. We caught it early enough and started the breathing treatments. Also at the beginning the nurses were faithful to show up. So he didn't miss breathing treatments at night.

Just to log for my records

We had another seizure on Dec 26 as we were heading home from Rob's parents house, it lasted about 6-8 minutes. Between 6:30 and 7pm (don't have exact time), we had everything loaded in the car to come home, I noticed he was seizing in dad's arms (had this going the sleep look, but his eyes were off to the left instead of his usual right stare), so I grabbed the pulse ox (130s heart rate, and 100o2), and o2 and other emergency equipment, gave him a little time to come out on his own, and then gave 1mg Valium/diazepam rectally, with in 2 min after the dose he was awake, but very scared tightly clenching mom, and disoriented. I gave aconite for fear homeopathic, and Ruta because of some high tone after the seizure. The aconite calmed him down, and after the Ruta he started vocalizing some. He stayed awake till we got home and fell asleep right before 10pm.

Christmas

We had a great Christmas, the Kids enjoyed tons of toys, and having both grandparents over to watch opening them. The highlights were Tommy got a new bike and some transformers, Micah got a new tricycle as well as tons of Cars from the Movie Cars, and William got lots of table toys, and a Mavericks jersey. Dad got some new underware, and light fixtures, and Mom got some ornaments, a rosary blessed by the pope in Italy, from Rob and Candy's trip to Italy this October, and a St Dymphna medal (St of mentally afflicted/epilepsy). We had christmas morning at home, naps and then headed to my parents house in Plano, then we headed south to Mansfield and Jason and Jenny's house, and finally to Nana's and Papa's for the night. Of course I forgot the Night feeding at home and had to make a "quick" trip to Plano so William could have his night feeding, and I could play night nurse.

2010 christmas card

Leave me a comment with your email/mailing address if you want to receive our christmas card this year :).

Merry Montage Christmas

Design your Christmas cards with Shutterfly.

View the entire collection of cards.

Our Weekend

We enjoyed a weekend out without kids, or seizures or anything. it was a wonderful weekend, and Rob and I enjoyed our time together, and just played what we did by ear. We had a great friend to Watch William, Wendy a nurse took her wonderful time to give us a break, and Nana and Papa enjoyed the time keeping Tommy and Micah busy.

We took the time and headed south with no particular destination. We left around 9pm and stopped in Waco for the night, had breakfast the next morning and headed on to San Antonio, we ended up staying on the River-walk and had a great time just enjoying the city. This was our one last get away before our new baby will join our family in February.

PS: This is the first time I've mentioned our new baby we're expecting in February. It's one baby this time, but we're waiting to find out boy or girl till he or she makes an appearance. We're excited to add a new sibling for our boys, and expect that William, Micah and Tommy will all dearly love the newest baby. Everyone is very excited. Tommy even has a name picked out and declares that it will be a Girl named Siena, no matter how hard I've tried to convince him otherwise. Micah used to say he had a baby in his belly too. We love reading books about new babies arriving, like "Welcome with Love" and "Angel in the Waters".

More seizures

Dec 9th 30+ min Seizure during our 24 hour EEG lead to EEG being called off, and transport to the hospital, started with a big jerk to the right and then spaced out to the left. Stopped seizure with 1mg Valium, and gave o2 during seizure as a precaution.

Dec 11th 90+ min Seizure, Jerking hand and head tonic clonic in motion, was given 3 mg Valium each mg separated by 30 min before seizure stopped. Breathing stable, and Valium given orally because still able to swallow.

William's Seizures

William has been having seizures about once a month, with an increase in frequency around some adjustments we've made in William's medicine. Currently we're using his Valium to treat the seizures till we get into see a new neurologist.

Seizure Dates (so I have them for my record):
July HEAT Related (unknown sunday) about 1pm gave valium and H2O 1mg 8oz
August (26th) HEAT Related gave valium and H2O 1mg ER Ambulance visit CT Scan
September (19th) HEAT Related
October (16th) HEAT Related ER Visit 1.5 mg valium followed by vommiting
November (6th) Right after feeding at home sat morning resolved with homeopathic remedies/on it's own.
November (14th) (daily valium lowered one week prior) Diastat valium 5mg followed by coma for 7 hrs
November (18th) Medication discontinued after Diastat Twitching on the right side hand and face, medication restarted
December (5th) missed valium dose previous day, and pulled off of suppliments due to urine catch, short seizures multiple 2 am several in the evening space out type, resolved without treatment, followed by tiredness and sucking

Our Pedi is doing a urine test to test for the cause of the seizures, we see a new neuro on the 16th of December, we have MRI scheduled for Tuesday the 7th, and 24 hr EEG for Thursday the 9th. Our Pedi's chiro is treating for parasites he's found in the gut with nutrition analysis.

Tommys hit

> The funny thing is Tommy was on 2nd when the batter hit it to the pitcher. He ran to 3rd and the pitcher ran home. Tommy then without anyone saying anything ran home. The pitcher never saw him until Tommy slid under him as he stood on home base. Antlers Up!
>

William's Gardian Angel

We had an experience with William's Angel recently, he's been having heat related seizures, and needs medicine for them to stop. Also, needs O2/breathing treatments with them. We were at brother's Baseball game, and the alarm went off at the house, and I get a call from the police, I try to tell them to just leave it alone and let it go I'm sure it's nothing, but they were already headed out to check on it, he says he'll call me back when he gets to the house, so then Rob get's another call about the front door going off again, and then 5 min later another call about the back door going off. I tell him just ignore it it's the police searching the house, and I'm sure all it fine, he's about to leave to go tend to it. Then he makes another snide comment to me about it, so I grab William and head home to take care of nothing. Police man calls to say everything is fine at the house and it's nothing he could find. On the way home I realize that William's eyes look like he might be headed into a seizure (we've had 3 or 4 before). So I get home, house is fine, and he's in seizure mode so I put him on the couch and try to take care of him, hook up his pulse ox and o2 etc (which I have BECAUSE I"M HOME ALL BECAUSE of the ALARM), give him medicine. Anyway seizure lasts he drops o2 while on oxygen (but only for a second, and quickly recovers as long as he's on o2), so I call 911, and we go to hosp (only get o2 and suction at the hospital). And spend the next 6 hrs in the ER sleeping and recovering, and watching the Rangers Win :).

But the angel part is the alarm that started the whole thing was a HALLWAY alarm, the whole reason I was home around the medicine, O2, and pulse ox is because of the HALLWAY alarm. Nothing was in the HALLWAY that could have set it off, and it's pointed level with the ground to not pick up the dog, and the dog never sets it off. I'm convinced the more I think about it, William's Guardian Angel was playing with the alarm that day.

We now have O2, Pulse Ox (finger kind), O2 mask, Meds, NG Tube, Breathing Treatment, Neb kit, etc all packed on the wheelchair.

Tommys first hit out of the air!

Tommy did a great job at his baseball game and hit it out of the air while the coach was pitching the ball instead of off the tee. I'm so proud of him.

Unfortunately I was home/ER With William, he had another episode brought on by heat today. We've had these about once a month, for the past 3 months. They seem to last from 30-45 min before he comes out of it. During these times he needs o2 and breath very shallow. Luckily we have O2 at home now, and 2 of the times we've been able to deal with it at home. This one we probably could have dealt with at home also, as all the ER did was give O2 for the first 30 min, and suction him; both of which could have been done at home.

Sleeping with pumpkins 2

Tommy took one too.

Sleeping with pumpkins

Lydia bought gourds and pumpkins to decorate the tables at our house. Micah played with one most of the night and decided that he wanted to take the pumpkin to bed with him too.

Made it to Church on Time by myself

Made it to Church on time by myself with all 3 kids, and even made a stop before getting to church.

What was even better Micah was pushing the Walker, Tommy pushing the wheelchair with William in it, and I had my hands free where I could have had the new baby in them post arrival in Feb!  They were great big helpers!

Tommy's Allergy Test

Got Tommy's allergy Tests back, and it's off the charts in may areas, He can eat: chicken, Lamb, Pork, Beef, No Grains, No Nuts, Fruits (except melon, and Grapes), a few veggies, No beans. The Doctor said his results compare to kids she sees with autism and sever ADHD. We have to meet with a nutritionist and do more test on URINE and STOOL.

Doctor says he has a leaky gut and can't absorb what he is eating properly.

And we have to do digestive enzymes with each meal, and we'll figure out from the urine and stool what we need to supplement with.

William's Wheelchair

William's wheelchair was recently adjusted because he's grown. He's now on some of the last settings for the seating system, and will need a new seating system if he grows between his hips and knees. His weight is currently 25lbs 4oz and 36" tall. He's only an inch shorter than Micah and about 4 lbs lighter.

Also, his wheelchair in the new settings is too heavy for me, or too big. I can no longer lift it into the vehicle (about 3 feet off the ground), so I'm looking into a lift for the exterior of the vehicle to hold the chair so we can still take it with us when we go out. These turn out to be quite expensive, and insurance doesn't cover them at all. Here's a link to the one that best fits our vehicle. The cost for the lift would be about $1700 + $300 for having the hitch installed. So about $2000.

William's Doing Well

I haven't posted in a while because things have been going well and I didn't have much to say. Our GI doc visit recently went well he said William had gained 2 lbs since our last visit, and was a good weight. He said this is how we want to keep him. We don't want him to get fat, we want to keep him lean and muscular.

Nanas

Here's the cousins dancing in hula skirts after Haley's summer fun party.

High seas VBS 2010

Here is Tommy participating in VBS this summer in June! IT WAS A BLAST!

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