My Progress

Kathryn Penrose - The Communication Hotline

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 17^th 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 2^nd 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 20^th 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 24^th 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 11^th 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 18^th 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 10^th 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 14^th 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 9^th 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 6^th 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 5^th 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 31^st 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 15^th but could change very quickly.

December 25^th 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 16^th 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 11^th 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 7^th update:

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

December 6^th update:

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

December 5^th 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 4^th 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 3^rd 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 2^nd 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 1^st 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 30^th 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 29^th 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 28^th 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 27^thupdate - 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 26^th 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 25^th 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 24^thupdate:

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