Cook's Children's Rehab 2005.09.06
Today we had a speech evaulation. Miss Randy had Pj trying to identify objects. She also fed him pudding, apple juice, cherrios, cheetos, and apple sauce. YUM! It took over 2 hours and we got the results of her evaluation. She believes he does have good strong teeth, tongue, jaw and chewing motions. He drinks with a straw and she says that is awesome and helps his lip muscles. But she thinks his feeding problems may be due to some sort of texture or sensory issue. We've had texture issues before with his hands. They are very sensitive. If you rub his hands with something rough or put water on them he makes a face like he's going to gag! So she says we will be working on alot of trial and error with him, narrowing it down to the foods that he likes and adding more texture to them. As far as his language goes, he is severly delayed. She recommended speech twice a week. Before she even finished his evaluation I told her it was like he stopped progressing at 12 months and I was about right. He's on the level of a 9 month old basically on receptive and expressive speech. We've got a lot to work on. He cannot name objects or parts of his body. And all of this baffles me because I talk to him constantly and we read constantly. I have heard some theories that when kids get really focused on developing gross motor skills their other skills such as language can take a backseat. Well since about 12 month Pj's been totally focused on scooting and now walking so I'm really hoping that's whats going on and that once he gets on his feet he'll really start to pick up in his speech.
They do not have any spots open at the moment, but they have put him on top of the list because of the severity of his delays and his feeding issues. She is concerned with failure to thrive issues. We were asked to schedule an appointment with our pediatrician to get referrals for a hearing test, a dietician, and a developmental pediatrician.
I just hope they can start working Pj in soon. Were there two days a week for O/T and P/T. We might as well be there a couple more days a week! :)
General Update 2005.09.06
Since I just started this blog I can't past date posts. I'm pulling all my other posts regarding Pj's treatment and will be posting them on here. Hopefully getting things in some sort of order soon. Here is December 2003 - March 2004
December 29, 2003
At 10:12 a.m. Paul Sifuentes Jr came into this world. He was born at
January 6, 2004
Our first outing. Mommy and Daddy took PJ to his first check up at the Pediatrician, Dr. Carrizales. PJ was good, he slept the whole car ride.
January 7, 2004
Mommy and Grandma Angie took Pj to
January 14, 2004
PJ had his casts changed for the first time.
January 22, 2004
PJ had casts changed again. We are starting to see signs of change in his tiny little feet.
January 29, 2004
HAPPY BIRTHDAY AUNT CASSIE!!!! PJ had casts changed again.
February 4, 2004
Pj’s first surgery. Dr’s were too scared to do his circumcision in NICU so we saw Dr. Bliss at Cook’s in
February 12, 2004
Another cast change at
February 18, 2004
We had our first meeting with Miss Wendy from ECI. She also brought out a nurse to check PJ out! :)
February 23, 2004
Back to Dr. Bliss to check on the PJ’s pee pee!
February 25, 2004
Miss Lori, the O/T from ECI came to the house for the first time to work with PJ.
February 26, 2004
Pj had heel chord release at Scottish Rite. It was done with EMLA. Poor PJ. He bled through his little casts in like an hour.
March 1, 2004
Today we met with Dr. Kukolich. She is the one who diagnosed PJ with Arthrogryposis in the NICU. She is a geneticist. We will continue to see her all of Pj’s childhood.
March 2,2004
Pj’s 2 month check up! He weighed 8 lbs 9 ozs and was 22 inches long! My baby boy is growing. He was 5lbs 10oz and 18 inches at birth.
March 11, 2004
Another appointment with Lori from ECI.
March 15, 2004
DADDY takes his vacation this week. We get to rest and relax and have fun together.
March 18, 2004
MOMMY’s 21st birthday!!! Yeah. Pj went to Grandma Debbie’s house to sleep over for the first time EVER!
March 25, 2004
Pj got his casts off. Today he received his Dennis Brown bar that he is supposed to wear 22 hours a day. All day, all night. Take off to bath and dry off feet. Pj doesn’t like them at all, but he’s getting used to them.
Food and Drink 2005.09.15
I'm sure if there was a hell for bad mother's i'd be there after tonight. I gave Pj his first happy meal tonight. With all the food troubles we've been having I wasn't sure if he'd eat a hamburger, but my mom had a little sucess with his last week so I gave it a whirl. It was 8:00 pm and it was almost bedtime so we stopped by McDonalds. When we got home he ate it right up! He didn't care too much for the french fries, but he ate 75% of the cheese burger. If he'll eat burgers I'll buy him one everyday! He needs the protein.
Cook's
Let's brighten up these posts a little bit! On this Monday September 12 we headed over to
I haven't finished posting all of Pj's previous appointments but I'll get it in here soon!
2005.10.16
Well since our last post we haven't had any new appointments! Other than adding speech therapy to the mix twice a week. It has really helped alot. Since we started S/T we have added Applesauce to the menu (sometimes), and definately started making more sounds. He's back to saying out-side, mama, ball, and what. These are words he had said before but then in the last few months he has really clammed up. We also blowwwww bubbles alot! Pj like to pop them, but were trying to get him to blow them so he can use more air when he talks. On Monday we went to Chuckie Cheese with
General Update 2005.10.17
I promised I would catch up all of Pj's past dated post I had on my computer. Here is the next batch. This goes from April 2004 - September 2004. Hopefully soon I'll get all caught up and have them all on here.
April 1, 2004
Today we had our first appointment with Dr. Izaki at Scottish Rite hand clinic. She seems please with Pj’s development and basically told us we’ll be playing it by ear. That it was too early to tell what he would be able to do and what he didn’t. She didn’t want to splint or order O/T for him other than ECI.
April 7, 2004
Wendy from ECI came out again today. We read books together.
April 15, 2004
Went to Scottish Rite today for a check on how Pj was doing with his Dennis Brown bar. He has gotten used to them and doesn’t even seem to mind. He likes to bang the bar around everywhere. I also voiced some concern about Pj’s outer two toes on each foot they seem to be curling under and it looks like it could hinder his walking. Dr. Rathjen said that we could release them like we did the heel cord or else he may walk on the ends of them and actually kill the tissue.
April 19, 2004
Dr. Rathjen performed the toe surgery we had decided on last week. He released the outer two toes on each foot. Back to casts for 3 more weeks!
April 28, 2004
Pj’s 4 month check up with Dr. Carrizales! He is 23 inches long and 10lbs 2ozs. Dr. Carrizales is very excited at how Pj is growing. She has developed quite a bond with him. We started Rice cereal today!
April 29,2004
Today was a very busy day! We had Wendy from ECI at 12:45 and Lori from ECI at 1:15.
May 1, 2004
TODAY IS LEO’S BIRTHDAY! He is 1 years old.
May 11, 2004
Back to Scottish Rite. Dr. Rathjen thinks Pj is doing very well with his Dennis Brown Bars.
May 13, 2004
Miss Lori from ECI was here today! We are starting to work with Pj on stretches I can do that will really make a difference. His wrists are getting a lot looser. I think O/T is really helping. Pj also started Oatmeal Cereal Today.
May 17, 2004
Pj has gotten to big to sleep in the bassinet. We moved the bassinet out and the crib in to our room today! What a big boy!
May 21, 2004
Started Barley Cereal. Pj liked it. I don’t think he can tell the difference in any of the cereals.
May 27, 2004
Lori from ECI came today and we have worked up to 3 times a day eating cereal.
May 29, 2004
Pj’s second sleep over at Nana’s house.
June 5, 2004
Pj spent the day with Grandma Angie while Mommy & Daddy went to Wet’n’Wild! Whoo-hoo!
June 11, 2004
One more check up with Dr. Bliss.
June 15, 2004
Dr. Rathjen is still very happy with Pj’s feet. He thinks Pj may still need another heel cord release, but not until he is closer to walking. He says we can change to wearing the Dennis Brown bar only at naps and night time.
June 16, 2004
Lori from ECI came out and we worked a little bit on Pj’s reflexes.
June 22, 2004
Miss Wendy from ECI came out and played with Pj they also did a little reading too.
June 25, 2004
Started Oatmeal with bananas and Pj really liked it!
June 29, 2004
Pj’s SIX MONTH CHECK UP! He was 24 1/2 inches long and 13lbs 6oz. I can’t believe it’s already been 6 months. The time has just flown by. Dr. Carrizales gave us the go ahead to start baby fruits and veggies.
July 1, 2004
We tried Green Beans today and Pj HATED them. They say it can take up to 15 introductions to a food for a baby to accept it.
July 6, 2004
Pj’s First Tooth broke through. He is in a little pain. Its so amazing to see him grow up.
July 16, 2004
Pj started white grape juice today and the following morning he woke up with his first diaper rash! Opps!
August 3, 2004
Today we saw Dr. Rathjen and he was very uphappy with Pj’s feet. He had been wearing the Dennis Brown bar at night and nothing during the day. He says we can either go back to the bar 22 hrs a day or be casted for 3 weeks and then we can go back to the bar at night and AFO’s during the day. We chose casts.
August 10, 2004
Pj’s second tooth popped through.
August 19, 2004
This was our second appointment with the Scottish Rite Hand Clinic. I was very disappointed with our first appointment. Armed with information I came in with lots of questions. We also fought for wrist splints. Pj was fitted for them before we left the clinic today. Miss Lori from ECI came along.
August 24, 2004
Today Pj got his casts off and new AFO’s. He doesn’t even know what to think of these. He was happy to have his casts off, but these big plastic boots are kinda weird to him.
September 13, 2004
Today we met with Dr. Kukolich again. She is going to be following Pj’s progress through all of his childhood. She is a brilliant doctor, though her bedside manner isn’t that great. She is a wealth of info. She seems pleased.
September 22, 2004
Today Sarah at Scottish Rite fitted Pj for new AFO’s. Were having a hard time keeping that heel down. She gave me a pamphlet on new stretches to do on his feet.
September 24, 2004
We met with Dr. Reddington with Cook’s Cardiology. He did a sonogram on Pj’s heart and diagnosed him with a bicuspid aortic value. It is a heart murmur. He doesn’t think it should pose any problem, but he advised if Pj is going to have any “dirty” surgery (dental, gastrointestinal) that he needs a heavy dose of antibiotics prior to surgery. He gave me a card to carry around with me.
Shriner's Hospital
On Monday, October 24, we visited Shriner's Hospital again. We drove down on Sunday nights, and of course the BAD MAMA forgot the Hotel Voucher. Thanks to Auntie Lena, who faxed her credit card, we did get to stay in the hotel that night. Early Monday morning we got up and headed to Shriner's. Usually we saw P/T, O/T, and did X-Rays before seeing Dr. Barnes in the morning, then went to lunch and saw Dr. Bennett in the afternoon. But this time since our appointment was at 10:00 a.m. instead of 8:00 a.m. I was a little confused. Right away we went up to P/T. They were very please with his progress. We saw Kathy Price the director of P/T. Then we went over to O/T and Becky Ligon the director made Pj new elbow and wrist splints. There was a young student who was so scared to touch Pj because he is so loud and fights back so much. I felt bad for her. I wanted to say, You've just gotta manhandle him or else you won't get your measurments. Ms. Ligon agreed we could try supinator straps and home, but said no to e-stim. She said the muscle tissue is not normal. Then we returned downstairs to clinic and were told to go to lunch. We would see both doctor's after lunch. Dr. Barnes was very impressed with Pj's feet. He thinks he is definately on the right track. He also gave the go ahead to stop wearing the Dennis Brown Bar, which we had stopped a couple months ago anyway. Dr. Bennett was really excited with all Pj could do. We had brought a few toys from home that Pj played with. He also examined him while Pj was scooting down the hall. He said he believes we can do the elbow surgery at 4 or 5. And he also mentioned a wrist surgery at 8 or 9. We had discussed this at length before and they said they would not perform this surgery. But hey! I'm happy. Hopefully we can get these big surgeries out of the way while Pj's too small to rememeber. All and all they were very pleased. We got fitted for new AFO's that we have to pick up in 3 wks. They will have jungle animals on them. We will go back to Shriner's in 6 months. As for the other stuff that happened in our trip: flat tire, no money, stuck in Downtown Houston at 5 pm traffic, and forgotten breakfast coupons. I won't even go there. :)
Shriner's Hospital
I am a bad, bad momma! It's December 11, 2005 and we've been to Shriner's AGAIN and Pj's started WALKING and I have not posted. We went back to Shriner's on December 2nd, to pick up Pj's new AFO's. I had picked out some with little tiny jungle animals on them. When we got them the jungle animals are blown up and their pretty darn ugly. I'll post a pic soon. The maroon panda bear on the ankle looks like a pool of blood at first glance. After picking up the AFO's we decided to stop over to
Christmas 2005.12.11
MERRY CHRISTMAS!!!
Pj's Christmas Gift List
- VideoNow Jr. w/ Dora & Blues Clues
- Little
- FP Stride-to-Ride
- SOCKS
Still on the Wish List
- Little Touch Leap Pad
- Clothes, Clothes, Clothes
- Bristle Blocks
Television 2005.12.18
Ok... the little screen, but at our house it is a BIG Screen. Pj was featured as the first story on the 6:00 pm news on Fox 4, a local station on Wednesday December 15, 2005. 
On Monday afternoon Mr. Fil Alvarado and his camera man Jorge Villareal came to our house to tape our story. The filmed Pj walking around alot and could not figure out what this woman downstairs is complaining about. He touched both of their hearts. They also filmed me explaining a little bit about Arthrogryposis (though Mr. Alvarado butchered "Arthriogripiosis" on the actual story) and me explaining his AFO's. The also filmed Paul speaking about how we feel like we are walking on eggshells constantly with Pj. You can barely let him down and then she goes to banging. So they went to speak to her after they filmed us... Well at first she was SUPER polite. She said "I had no intentions of getting them kicked out.. that's not what I wanted." She was talking so softly almost whining. Then after the reporter started to ask her some tough questions she was screaming, "I BETTER NOT BE ON THE NEWS. I'M GOING TO SUE YOU FIL ALVARADO AND FOX 4 IF YOU SHOW THIS. I DIDN'T SIGN A CONSENT AND YOU BETTER NOT PUT ME ON THE NEWS!" Well obviously it worked, b/c they didn't show her at all. They only read a quote from her stating she had a right to her peace and quiet. No what she was asking for was peace and silence and she'll never get it. I hope a heard of buffalos moves in after us! It will serve her right. Anyhow back to the news story. They spoke with the owner who was a TOTAL weasel and he just threw my parents under the bus. They showed him on the story and all he says is "From calling the office I know there has been a problem there for a while, and they have been working on it for a while..." Ok..??? And that makes no sense nor is it any kind of definative statement. Anywho I've got it on our DVR box right now, but since we are moving by the end of this month hopefully I will be able to record it to a DVD to have as a keepsake before we turn the box in.
As soon as I record it to a DVD I'm going to try to get someone to help me upload it so everyone can see it.
Our New Place 2005.12.18
We signed a LEASE! We went yesterday to go view some apartment "cottage" homes. That just means they are one story, no neighbors above or underneath. They are kind of older and a little run down on the outside, but on the inside they are SUPER spacious. This one has a living room, and a 2nd living area (den) and 2 bedrooms, 2 baths. It's 1321 sq feet. I mean your home really is about what is on the inside right. So hopefully we will fill it out with our stuff and our memories and we'll make it ours. This is our last stop before buying a house. We both need about a year or two more under our belts before we even think about buying a house. Pj's really going to love it.
Cook's Children's Rehab 2005.12.24
Mrs. Kit has been desperately trying to think of things for Pj to do in O/T. We figured while he was learning to walk he was so enveloped with gross motor skills that fine motor skills were going to take a back seat. Well now he's mastered the walk, but still no interest in fine motor stuff. Ms. Kit was really trying to think of something he would enjoy b/c he's cried the last 3 sessions straight. She came up with this one all on her own. They already had a modified trike where you could strap the kids feet in, but she took some gloves and velcro'd them down the the handle bars and velcro'd Pj's hands in. It didn't give him much of a choice, but he took off!! He was doing laps around the hall. Pj craves motion and this was just the activity for him.
Tricycle Pics
Christmas 05 2005.12.24
Merry Christmas!! I can't believe it is Christmas Eve already. Pj will be 2 in 5 days. Last year at this time he was just learning how to sit and spin, which lead to scooting by February. This year he's up and walking. He's actually running. He definately keeps me on my toes. I'm so excited to share this Christmas with him. He is almost, but not quite, old enough to understand the concept of Christmas and Santa. Next year will be a whole new ballgame, with our new edition, but I know Pj will understand. He'll be ready. I'm so proud of him and all the accomplishments he has made this year. He has come so far. He probably has a vocabulary of around 30 words, from 10 words in October. He is walking and he does eat hamburgers!! Whoo-hoo! Anyhow I'm sure I'll have some good pictures after tonight and tomorrow. I just wanted to say what a fantastic year this has been and how proud I am of Pj!
2005.12.26
Christmas is over and thank goodness! Pj got so many toys I don't know if he is going to have room for his bed our new place. Robert and Veronica got him a HUGE ball pit, and a chicka chicka boom boom Blue. My parents got him a story reader and a baby farm animal set, and several outfits. Paul's father got him a Nemo TENT and a Cowboys outfit and Spiderman shoes. Me & Paul got him a VideoNow Jr, socks and clothes, a keyboard, a sports center w/ baseball, basketball, and football,
More to come soon and some pics I promise!
2005.12.29
Today Pj is the big birthday boy! Well actually he just cried when I woke him up singing Happy Birthday this morning. (Must have been my singing!) Anyway my little Paul Junior was two years old today at 10:12 a.m. That was the moment that they pulled him out with the forceps! And smashed his little ears in. ;) It has been a long two years and we have learned alot, both of us. We've been through 1 in office surgery, 1 SURGERY SURGERY, countless casts, 7 pairs of AFO's, 5 wrist splints, 3 elbow splints, and 1 Dennis Brown Bar! WOW! What a trooper. We've been under the care of 3 hospitals, 4 P/T's (not by choice), 2 O/Ts, 1 S/T, and countless doctors. But we've also played on the swings at the park, we've swam in the pool, and we've danced in the dark. We've laughed at his reflection in the mirror and we've screamed along with Nemo and his dad. It's been a long two years but it's been a great 2 years. I've loved every minute of it, even the minutes that I loathed. I was terrified the first few hours of his life b/c I didn't know what his life was going to be. Was he going to live? Was he going to be unable to move at all? Was he going to be wheelchair bound? I didn't know. And now he's a happy healthy two year old running around that house. I love my Pj more than anything in this world and I thank God for every moment I spend with him. I think had I had a "normal" (what's normal anyway?) child I would not have appreciated as much. When Pj is crying and throwing a fit I appreciate the fact he is here with me and breathing so that he can cry. When I see him do the slightest thing it makes my heart sing. Most parents only know the large milestone like walking or talking. I know the first day Pj at Fruit Medley and I know the first time he drew with crayons and I know the very day he realized he could hold things with his hands, which eventually lead to throwing things, banging things, and tossing things! I know all of it. And I am proud of that and I am proud of him for every accomplishment he has made and every accomplishment to come.
2006.01.21
I will be moving my blog to Pj next week. Friendster does not archive, or let people view archived postings (I'm talking about a couple months here, not years) without a fee. Sorry.... There are alot of other providers that do. As soon as I have time this week I will be moving Pj's blog to BlogSpot or else where!
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