KP Web

Kathryn Penrose Communication Hotline

Kathryn's Progress

Kathryn has been progressing well and we are leaving these updates on the site so that everyone can read about her struggle as an infant

Recent Updates

  • November 12, 2007

    • Diagnosed with Angelman Syndrome.  Deletion + on Chromosome 15.

    • Going to see a Neuroopthamologist on November 27, 2007 to confirm CVI-Cortical Visual Impairment diagnosis.

    • Kathryn sat on a bench independently while holding the spinning globe wand for 5 minutes.

    • She took 48 steps in her gait trainer ( 8 left foot, and 40 right foot)

    • Her first word was 'Pooh' for Winnie the Pooh.

    • Meagan (Kathryn's cousin-10 years old) has decided she wants to teach Kathryn to communicate and has been reading up on it.

    • Kathryn is attending the PPCD program at Stone Oak Elementary School and loves it!

    July 15, 2006

    • Upcoming eye surgery in September for Strabismus exotropia.

    • We talked with Kathryn's neurologist, Jerry Tomasovic, and will begin diagnostic testing soon.

    • Kathryn is still not wanting food by mouth.  We are working with flavored sprays on toys and oral motor work with chewy tubes and a vibrating globe.

    • Kathryn sat for 18 seconds independently at therapy last week.

    • We are working with our OT on developing prerequisite skills for using an augmentative communication device.  This includes choice making and requesting.

    • We will start with using actual objects, then pictures of actual objects, and finally symbolic pictures.

    • Kathryn had a therapeutic listening session and responded well.

    • Kathryn attended her first Kindermusik class this week.  She loved it!

    • Kathryn has a corner chair coming next week!

    • Nana, Beth, and Meagan came for a visit the weekend before July 4th.  We went to Sea World and did lots of swimming.  Our favorite things were feeding the dolphins and watching the Viva! show.

    May 20, 2006:

    • Weight is 26 pounds. Height is 34 inches. Doctors a little concerned about head circumference.

    • Kathryn has not eaten solid foods by mouth for the past 2 months. 

    • We are working to overcome her sensory issue to food.

    • Doctors are concerned about her pace of weight gain and so we are giving her Carnation Instant Breakfast Junior and HEBuddy nutritional drinks.

    • Her Prevacid dosage has been doubled in order to control G.E.R.D. (reflux).

    • She is taking Klonopin in order to control her involuntary movement due to Chorea.

    • Kathryn is getting a new pair of AFO's and stander this month.  Her orthopedist said her hips were looking pretty good so hopefully overnight bracing will not be necessary.

    • Surgery for Strabismus Exotropia (outward turning eyes) this summer.

    • Kathryn has been cheering her SPURS to win Game 5 and Game 6 against the Mavericks.  Game 7 is Monday.

    • She loves to be in the water and luckily we are staying with CC & Pops while we build our house and they have a pool just right for Kathryn.

    • Favorite toys are her VTECH Sing a Long Piano and Enabling Devices switch toy.  We are already on her 2nd VTECH piano!

    • Increasing awareness of her environment and making better eye contact since she got her Mickey Mouse glasses on March 10, 2006.

    • Right side oblique strength is emerging.  (Feb 17, 2006) Kathryn is propping on her right elbow.

    • Showing improved trunk dissociation. (Moving upper and lower body independently and in opposite directions.)

    • Kathryn taps her hand when she wants more!  She is learning to get mommy and daddy to respond to her every whim!

    • Kathryn had a fun visit with Nana May 2-4th.  We went shopping in Boerne and had lunch at the Bear Mill Bakery.  Later that evening we had a picnic with fruit cups and corn cups from La Palatera.

    July 4, 2005:

    • Weight is 22 pounds 9 ozs (7/1/05)
    • Kathryn is eating 2 baby food meals daily
    • Kathryn has an MRI scheduled on 7/8/05
    • She is working on standing with support at therapy
    • Kathryn is the proud owner of AFO's (Ankle/Foot Orthotic's) to help with standing
    • Kathryn's interaction with individuals is improving daily

    January 23, 2005:

    • Weight is 19 pounds 7 ozs (1/10/05)
    • Kathryn has started eating Baby food regularly
    • Kathryn has a follow up appointment with her Neurologist 1/28/05
    • She is needing less support while sitting
    • She is starting to reach for things
    • Kathryn is rolling/scooting around the floor
    • Kathryn has been removed from all daycare and is at home with Mom
    • Kathryn has found her thumb and eats it all day long
    • Kathryn has seven teeth (4 on top, 3 on bottom)

    September 16, 2004:

    • Weight is 17 pounds 5 ozs
    • Kathryn is 27 inches long
    • Kathryn loves the water and taking baths!
    • She is rolling over from the back to the front.
    • Loves to bring her feet up and roll from side to side.
    • Kathryn is becoming more vocal every day.
    • We are working on sitting up, tracking, batting objects, and improving trunk strength.
    • The heart rate monitor was removed last month.
    • Kathryn started daycare August 1 at Rainbow Station. 
    • Diagnosed with Monosensory Integration Dysfunction.
    • Kathryn is not reaching her developmental milestones and the doctors are very concerned.
    • The neurologist feels that the prognosis is good with all the necessary intervention. (OT, PT, Speech)

    June 17th update:

    • Weight is 15 pounds 3 ozs
    • Kathryn is 26 inches long
    • We are waiting for the results for the last download to get the monitor removed!
    • Kathryn is sleeping well through the night (Worn out from the FFART)
    • Kathryn is feeding from the bottle and taking 5-6 ozs at each feeding

    June 2nd update:

    • Weight is 14 pounds 15 ozs
    • Kathryn is 25 3/4 inches long
    • She is laughing and smiling daily.
    • Really grabbing and hold objects
    • Reaching for items and exploring with her hands
    • Kathryn is in her own room and sleeping well through the night 60% of the time)
    • Kathryn is feeding from the bottle and taking 4-6 ozs at each feeding
    • We are trying to get the G-tube removed and the monitor removed prior to the family reunion.  Keep your fingers crossed...

    April 20th update:

    • Weight is 13 pounds
    • Kathryn is 24 inches long
    • She is tracking well with her eyes
    • She is laughing and smiling daily.
    • Starting to grab objects
    • Does not sleep at night (Time to move her to her OWN room but Mom won't let me)

    March 24th update:

    • Weight is 12 pounds 4 ozs
    • Kathryn is above 100% on the growth curve for a two month old
    • She is in the 30% of 4 month old babies
    • Kathryn is 23 3/4 in long 
    • She is starting to grow out of her 3 month clothes 
    • She is still trying to roll to her stomach from her back.

    March 11th update:

    • Weight is 11 pounds 4 ozs
    • Kathryn has had her g-tube replaced with a "button type".
    • Refuses to sleep between 2:00 am and 4:00 am 
    • She is trying to roll to her stomach from her back.

    February 18th update:

    • Weight is 9 pounds 15 ozs
    • Breastfeeding solely and she is gaining weight well!
    • Still not sleeping at night.  She likes to snack every hour.
    • Lots of cooing and visual interaction.
    • Not a fan of tummy time.  Still rolling over from tummy to back.  (both ways!) 

    February 10th update:

    • Weight is 9 pounds 2 ozs
    • Meds are the same
    • Jennifer has started breast feeding once a day
    • G-tube feedings are at 68 cc fortified with 24 cal
    • Oxygen saturation is at 100%
    • Refuses to sleep between 12:00am to 3:00am (We're tired)

    January 14th update:

    • Kathryn gets to come home today
    • On Zantac .33 ml every 12 hours
    • On Mylicon .3 ml every 3 hours
    • On Iron .2 every 12 hours
    • Off phenobarbital and other breathing treatments.
    • She is still feed though the G tube (no oral feedings)
    • Weight 7 pounds 2.4 ozs

    January 9th update:

    • Everything is going great
    • Kathryn is off of oxygen and is improving daily
    • Weight is 6 lbs 9.8 ozs
    • Kathryn is on Zantac (heartburn) and Mylicon (Gas)
    • Phenobarbital (seditive) twice a day to keep her calm
    • Rumor has it that she will be coming home on January 14th.

    January 6th update:

    • Kathryn is still on the ventalator due to the previous days tests
    • Second Bronchoscopy is completed with simalar findings.
    • Kathryn is removed from the ventalator at 2:00 pm
    • Breathing treatments are given every six hours to clear her lungs and windpipe
    • Kathryn is getting a seditive to keep her calm and speed up the healing process

    January 5th update:

    • Weight is 6 lbs 7 ozs
    • Oxygen is .5 liter flow at 25%
    • Several test were run (MRI, EEG, Genetic scan, Bronchoscopy)
    • Results were good on MRI and EEG both normal
    • Genetic states that Kathryn does not have any conclusive traits or sydrome like symptoms, (good)
    • Bronchoscopy shows that the windpipe is very soft and is collapsing under the negitive pressure when Kathryn gets upset (not good)

    December 31st update:

    • Weight is 6 lbs 2.5 ozs
    • Oxygen is .5 liter flow at 25%
    • Feeding is up to 55ml through g-tube
    • Kathryn is having some complications with feeding and is allowing some milk to aspirate in to the lungs.  All oral feeding has been stopped due to issue.
    • Minor complications are prolonging the stay at the hospital.  Estimated "go home day" is January 15th but could change very quickly.

    December 25th update:

    • Weight is 5 lbs 15.5 oz
    • Oxygen is .5 liter flow at 25%
    • Nissen Fundoplication was a success and Jennifer got to Breast feed for the first time today
    • Feeding is 30 ml every three hours
    • Back on Reglan to help digestion

    December 16th update:

    • Weight is 5 lbs 10 oz
    • Oxygen is .75 liter flow at 30%
    • Scheduled surgery for Thursday (Nissen Fundoplication - top part of stomach is wrapped around the lower esophagus creating a new high pressure one way valve to stop reflux)
    • Feeding is at 14ml per hour / 24 hours a day

    December 11th update: (Kathryn is 3 weeks old / 35 gestational weeks)

    • Weight is 5 lbs 4.6 oz
    • Doctors moved her feeding tube to bypass the stomach and directly in to the intestines
    • Removed her from Caffeine and Reglan (speeds up the digestion) 
    • Increased Oxygen to 25% at 1 liter per hour

    December 7th update:

    • Weight is 5 lbs .9 oz
    • No change in feeding or nasal canula

    December 6th update:

    • Weight is 5 lbs .4 oz
    • No change to feeding or nasal canula
    • Kathryn seems to be more comfortable

    December 5th update:

    • Weight is up to 5 lbs .8 oz
    • Feeding is at 14 ml per hour / 24 hour feeding to control reflux and removed rice
    • Biliribin has decreased to below 6 and will be measured once weekly
    • Added nasal canula at .5 liters and hour at 25%

    December 4th update:

    • Weight is up 4 lbs 14.6 oz
    • Feeding is still at 42 ml and added powdered rice
    • Biliribin is at 9.4
    • Removed nasal canula
    • Moved feeding tube to nasal passage

    December 3rd update:

    • Weight is up to 4 lbs 13.9 oz
    • Feeding is still at 42 ml per three hours
    • Buliribin is down to 9.1
    • Flow on the nasal canula is 1 liter at 21% oxygen

    December 2nd update:

    • Weight is down to 4 lbs 12.8oz (could be an error on previous day measurements)
    • Her feeding is up to 42 ml
    • Bulirubin level is climbing to 9.4 (Phototherepy starts at 10.0)
    • Is now on second dose of Prilosec to combat Reflux issue

    December 1st update:

    • Weight up 1.7 ounce to 4 lbs 13.3 oz
    • Her feeding is still at 38 ml
    • Bilirubin level is 9.2
    • She still has a nasal canula that is blowing room air to help her breath

    November 30th update:

    • Weight up .3 ounce to 4 lbs 11.3 oz
    • Her feeding has been increased to 38ml
    • Bilirubin is up to 8.6
    • She still has a nasal canula that is blowing room air to help her breath

    November 29th update:

    • *Kathryn is off of all Oxygen and is doing well
    • Weight up 1.3 ounce to 4 lbs 11 oz
    • *Kathryn's bilirubin is below 6 and has stopped phototherapy
    • Her feeding is up to 31 ml, or a little over an oz.

    November 28th update:

    • Oxygen level 23%
    • Oxygen volume 2 liters per hour
    • Weight up .2 ounce to 4 lbs 8.7 oz
    • Baby is under the Blue lights with a 7.9 bilirubin level

    November 27th update - Happy Thanksgiving:

    • Oxygen level 25%
    • Oxygen volume 1.75 liters per hour
    • Weight up 1 ounce to 4 lbs 8.5 oz
    • Baby is under the Blue lights with a 8.8 bilirubin level

    November 26th update:

    • Oxygen level 27%
    • Oxygen volume 2 liters per hour
    • Weight up 3.1 ounce to 4 lbs 7.5 oz
    • Baby is under the Blue lights with a 9.8 bilirubin level

    November 25th update:

    • *NEW* Kathryn is off the c-pap device at 11:00am
    • Oxygen level 25% on c-pap device
    • Oxygen pressure 6
    • Weight up 2.8 ounce to 4 lbs 4.4 oz
    • Baby is under the Blue lights with a 10 bilirubin level

    November 24th update:

    • Oxygen level 26% on c-pap device
    • Oxygen pressure 7
    • Weight up .1 ounce to 4 lbs 1.6 oz
    • Baby is under the Blue lights with a 12 bilirubin level