Kaitlyn Updates

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1/2/08

On December 17th, Kaitlyn turned 6 years old. She is 42 inches long and weighs 35lbs. She grew 3 inches and gained 3 pounds over the past year, which has been a great year! We had our annual meeting with Kaitlyn’s “team” of therapist from school and below is their report on Kaitlyn’s progress:

Kaitlyn has been attending Early Childhood Special Education-Kindergarten 3 full days and 2 half days a week. The goal is for Kaitlyn to be attending kindergarten 5 full days after Spring Break. Kaitlyn has demonstrated the stamina to stay all day and take food orally for the staff working with her. I have had the pleasure of working with Kaitlyn when she entered the program at three-years-old and now to be working with her at five-years-old. In this report I will explain the progress I have seen over the past three years along with areas of need.

Kaitlyn was mainly tube fed and was just beginning to try foods orally when I first met her at 3 years old. She struggled with swallowing and taking food from a spoon. Currently, Kaitlyn is receiving stage 3 baby foods and applesauce from a spoon. She drinks water from a sippy cup. She can hold the cup and drink herself, but prefers if someone holds the cup for her. She is starting to drink water from a small Dixie cup. She only gets 8oz of food through her g-tube a day. Kaitlyn will let you know if she is full or if she doesn't want what you are feeding her, by turning her head and clinching her lips closed. Sometimes this is just her being stubborn and she needs to be reminded it is time to eat. Usually by saying, "Kaitlyn Nicole it is time to eat!" in a direct voice helps. Putting your hand on top of her head is an indirect cue also to open her mouth to eat. Kaitlyn is beginning to use a two button board to indicate water or food, but is still learning to use this device. Currently, she will push which ever button is closest to her.

Her gross motor and fine motor skills have improved also. She was only in a stroller at the age of three, but now currently is walking with a walker. She has difficulties steering the walker. Kaitlyn also has a wheel chair, which she is beginning to make move. Currently, she is moving it backwards and in circles more often than forward. She is beginning to understand her hand movements to make the chair move forward. Kaitlyn is beginning to cruise along the furniture in the classroom and pull herself up on the tables. She is now willing to push down on an adaptive scissors without resistance with adult assistance. Kaitlyn will hold adaptive crayons for brief periods of time, but again using hand over hand assistance is more successful. Kaitlyn appears to enjoy participating in fine motor activities and allows for assistance. Kaitlyn enjoys being with her peers in the classroom and following the routines. She enjoys listening to music, playing hand clap games with peers and listening to books on tape. Kaitlyn is starting to recognize herself in the mirror and taking the time to look in the mirror, where before she didn't want to look in the mirror at all. Kaitlyn enjoys having an adult sing "Where is Kaitlyn" using the mirror. She is beginning to look at the adult being named. For example, "Where is Ms. Martin?" She will look towards me. Kaitlyn previously hasn't shown much interest in toys, until recently. Kaitlyn is now activating cause and effect toys using a button. She will intentionally push the button and watch the toy move. She has even activated two different toys when presented at the same time. She deliberately looks at the toy as she activates it. She is very vocal during this play activity. She is making lots of sounds during different activities that she finds enjoyable. Kaitlyn doesn't currently respond to greetings, but we would like to have her activate a button that says hi or begin to wave. Kaitlyn will respond to no or stop, but will sometimes cry.

Kaitlyn currently needs assistance with her self-help needs including toileting, dressing and undressing.

She is very active and prefers movement to being in one place. At this time, she is pulling to stand, but not using a half kneel to stand to do this. She pulls up on a person or low table and moves both legs together, dragging her toes, into standing. She is able to stand independently for up to 5 seconds. Kaitlyn walks with a very wide base of support and her balance reactions to a change of balance are slow and she will frequently fall on her bottom if she loses her balance. She is able to cruise along a table and along a wall with no sturdy hand holds in both directions, though occasionally will require facilitation to move along the wall instead of moving her feet and staying in one place. Kaitlyn has been seen to take up to 8 independent steps with someone in front of her, though most of the time, she takes 2 or 3. She is able to move from one surface to another in standing, though does it slowly and carefully. The two surfaces also have to be close together (less than 2 feet). She is able to walk in a reverse walker with someone next to her for safety. She is unable to turn the walker at this time and requires assistance if she gets stuck on a wall or is going to the side. Kaitlyn is also able to walk with one hand held. She walks better if her left hand is held rather than her right hand.

When Kaitlyn is out of her wheelchair and on the floor, she will sometimes four point crawl, but most of the time will go from four point to sitting and do a "roll" or spin on her bottom to get around the classroom. Kaitlyn is now intentionally reaching for and grasping an object of interest. She has a mixed hand preference but seems to use her right hand more frequently than her left. Kaitlyn uses a gross grasp to pick up objects. She can pull large pegs out of a foam pegboard and will now voluntarily release them into a bucket in 3 of 5 trials. She will also drop an object into my hand when given a verbal cue.

So as you can see from the teachers report above, she continues to be a very happy child and we look forward to what the next year brings because the progress she’s making each year is fantastic! Colleen, Emily, Kaitlyn, and myself want to thank everybody for thinking about us and being so supportive over the last 6 years!

12/19/2006

On December 17th, Kaitlyn turned 5 years old. She is 39 & ½ inches long and weighs 33lbs. She has gained 3 pounds over the past year, which has been a great year! We had our annual meeting with Kaitlyn’s “team” of therapist from school and below is their report on Kaitlyn’s progress:

Kaitlyn is a happy girl who smiles at everyone. She loves music as evidenced by her vocalizations and head movements during songs. She loves watching adults and peers in her environment. She is walking down the hallway with her walker (with close supervision). Her desire to move and get around in her environment is a strength as well. She is reinforced by smiles, claps and verbal praise.

Kaitlyn responds to her name and greetings by looking at the speaker and smiling. Kaitlyn enjoys watching adults and peers within her environment. During choice time, Kaitlyn moves herself into the areas where most of the children are playing (typically the block area). She will watch her peers and, at times, grab and hold a toy for a few seconds. Unfortunately, she will then throw the toy. In addition, she enjoys pushing her music cube around and laying her ear on it to hear.

Kaitlyn receives hand-over hand assist with all activities that require fine motor manipulation. Kaitlyn is beginning to hold on to objects such as a book, folder, markers, and her two handled cup, for up to 2 minutes. If she doesn’t hold on to the object she will thrust it with a flick of her wrist. When holding her two handled cup she is, at times, able to get it to her mouth, however, she doesn’t spontaneously bring the cup down and will end up with a mouthful of water which ends up coming out.

Kaitlyn uses a wheel-chair, pushed by an adult, to move within the school and out-doors. Kaitlyn requires assistance to position herself when doing daily activities. She sits in a corner chair during circle time routines and in a Rifton with a pummel during daily center activities. Kaitlyn is moving about the classroom using either 4 point creeping or doing a sit spin into and out of a 4 point stance. She is starting to pull to stand if she has something she can hang onto to push her elbows into the surface to get to standing. She is walking in a reverse walker with standby to minimal assistance for safety as she will let go of the walker and also for steering. Kaitlyn will occasionally move the walker away from the wall if she becomes stuck. She uses the walker (with close supervision) at least once a day to build endurance. She is also beginning to walk with one hand held, though it requires help with the weight shift. Kaitlyn has been seen to get from sit to stand from a bench; though standing is momentary (about 5 seconds) and she will usually reach for help, rather than get up without it. She is able to lower herself onto the bench with control and will frequently choose to sit, rather that stand in a stationary position. Stationary standing is difficult for her, as she has difficulty with maintaining her balance and eliciting her balance reactions for standing.

Using the “Rossetti Infant Toddler Scale”, Kaitlyn shows that at school she is functioning at the 9-12 months of age in language comprehension. Some of the skills are mastered at this level, other skills are emerging. Kaitlyn is functioning at approximately the 6-9 month level in language expression. She vocalizes in response to objects that move, during games and vocalizes to gain attention.

She continues to be a very happy child, as you can see in her pictures, and we look forward to what the next year brings. Colleen, Emily, Kaitlyn, and myself want to thank everybody for thinking about us and being so supportive over the last 5 years!

06/2006

Kaitlyn just finished the school year and will be heading into pre-kindergarten in September – what follows is a progress summary report from her teacher: Kaitlyn comes to school happy and eager to start the day. She separates from mom easily and is given toys to play with in the classroom. Most often she will sit/roll to the door, indicating, I believe, that she would rather watch the kids coming in from the bus. Kaitlyn is always the “social butterfly”. She loves watching her peers and will move herself into the area that they are playing and sit and watch. This is much different than in September 2005 when she would stay in the same spot she was put for the entire play time. At that time, she was able to swivel her body to watch her peers, however, she did not move forward. She enjoys toys that make music and will follow a music cube around as she throws it to activate the songs. She takes toys and throws them, and what a powerful throw she has. We do daily art/cooking activity in which Kaitlyn receives hand-over-hand assistance. Kaitlyn appears to like doing these activities, however, when I call her to come over to the table for her turn, she will only turn to me and smile. Since she is now able to move with ease, my goal for next year is to get her to come to me when she is called. When assisting her with coloring or gluing, she is holding on to the marker or glue bottle for a short amount of time independently. She is not able to maneuver it functionally, however, holding it and not dropping it is a good step in the right direction. At the beginning of the year Kaitlyn was being given applesauce or something with the same consistency and having difficulty swallowing, even one spoonful. We added sips of water from a sippy cup and mouthing a sucker. She has come along way and is now able to eat and swallow 7 spoonfuls of applesauce/pudding at snack time. In addition, we are working on having her hold her sippy cup and bring it to her mouth for a drink. During circle time Kaitlyn loves the songs. Her head twirls and shakes like I could never imagine doing. Kaitlyn’s ability to move in and out of the classroom is a huge skill that she has developed throughout the school year. It is so wonderful to see her move towards you to go home and to move to a specific area in the class or building. This ability increases her ability to be independent and that is what we are striving for. Kaitlyn is able to stand, but requires “standby assistance/protection” from falling. She is now rocking in a 4 point stance on her hands and knees and is beginning to crawl forward at home, but we have not seen the forward movement at school, only the 4 point rocking. Kaitlyn is able to walk independently up to 20 feet by pushing her walker, but does not always do this readily. It has become more frequent that she is walking with her walker without any help and this is a huge step in the right direction. Our goals for next year are to have her become comfortable with the walker so that adult “stand by assistance” is not required, and to teach her how to move her wheelchair by placing her hands on the wheels and pushing forward. Keep up the good work at home and we’ll see her next year!

4/2006

Kaitlyn is doing very well. She is 4&1/2 years old now and growing like a weed. She is getting better at walking in her walker and only needs minimal assistance. She loves going to school and playing and interacting with all the kids, but her sister remains her favorite person. We are coming up on another summer and are mostly sticking close to home since Emily has a ton of activities planned and Kaitlyn needs to continue with her therapy sessions through the summer.

12/6/05

    On December 17th, Kaitlyn turns 4 years old! She is 38 & ¼ inches long and weighs 30lbs, which is a gain of 2 & ¼ inches and 2 pounds over the past year. We had our annual meeting with Kaitlyn’s “team” of therapist from school and below is their report on Kaitlyn’s progress over the past year:
    Kaitlyn is a happy girl who likes to watch peers and adults within her environment. Kaitlyn is utilizing a wheelchair to get around, but is not capable of moving the chair herself and she practices daily with a walker. While hanging on to the walker, she has begun to move the walker herself and is taking up to four steps on her own. Kaitlyn has made some gains in gross motor skills over the past year. She is more willing to accept movement from another person and moves around via rolling from one place to another. She has recently figured out the four-point stance and is able to balance on her hands and knees. She will rest on her knees and pull herself up to a higher level (couch, chair) to obtain a toy that she wants. She is also capable of stepping and walking when someone holds her hands from the front or her hips from behind.
    She receives the majority of her feedings through her G-Tube, but continues to also be fed via mouth. She has begun to hold objects in her hands for a short amount of time (30 seconds) and during class time, Kaitlyn really enjoys toys that make noise and songs and music.
    Kaitlyn is very vocal and she vocalizes in response to a person's voice as well as to get a person's attention. Kaitlyn is very attuned to her teachers', sister's, and parents' inflection/tone of voice. She loves to receive smiles as feedback and positive reinforcement. Kaitlyn has made small gains in her sound repertoire in the school setting. She can make 3 different vowel sounds. She makes a blowing sound with her tongue extended, a humming sound, glottal fry in the throat, and at times makes kissing sounds. Two consonants have been heard to date. Kaitlyn enjoys reciprocal games like pushing a ball back and forth, bubble play or Row, Row Your Boat.
    Kaitlyn likes to watch patty cake and peek-a-boo. At times she will clap, but it appears to be more out of overall excitement than to participate in clapping during the song. We are continually modeling simple actions for Kaitlyn and would like to see her imitate those actions spontaneously. There has been some progress in her consistency of clapping her hands. I have added the action of slapping knees, but Kaitlyn has not been able to imitate that action without a physical assist. Kaitlyn does show that she is uninterested in activities by shaking her head "no" or by pushing things away.
    Using the “Rossetti Infant Toddler Scale”, Kaitlyn shows that at school she is functioning at the 9-12 months of age in language comprehension. Some of the skills are mastered at this level, other skills are emerging. Kaitlyn is functioning at approximately the 6-9 month level in language expression. She vocalizes in response to objects that move, during games and vocalizes to gain attention.
    She continues to be a very happy child, as you can see in her pictures, and we look forward to what the next year brings. Colleen, Emily, Kaitlyn, and myself want to thank everybody for thinking about us and being so supportive over the last 4 years!

6/27/05

Kaitlyn is continuing to make progress with eating and learning to swallow, but still relies on the G-Tube for the majority of her feedings/calories. Her legs are becoming stronger and she's able to stand up and balance by herself while propped up against something like a couch or chair. She also likes to stand and balance against daddy's legs, but when she loses her balance and grabs daddy's leg hair while falling, she gets frightened when daddy yells due to the pain of the hair being ripped out of his legs. She has a walker with wheels that is helping to teach her to take steps, but in the meantime, we have gone through the process of fitting her for a wheelchair, which should be arriving in July. She's now 3 & 1/2 years old and is getting longer and heavier every day (see the Easter pictures) and the strollers that we have are not going to be able to keep up with her growth for much longer. Every summer Kaitlyn's sister, Emily (7 years old), takes visits to see the grandparents out of state for 2 weeks and this August, Kaitlyn will be going on her first trip with her sister for this 2 week journey. This will mark the first time ever that Kaitlyn has been away from home and us.

1/10/05

Kaitlyn (3 years old) began school on January 3, 2005 and is loving it. She goes to school in the morning for half a day and her new team of therapists and teachers say that "she is such a happy child" and easy to work with. We took her the first day and she didn't cry a single tear. We placed her on the floor and the other 9 children in her class were saying hi to her and she was smiling at all of them. There are 10 children in her class and she is one of 3 girls. She is the only child that is not able to get around on her own and communicate verbally, but she has her own way of getting places (rolling everywhere) and will definitely introduce them to her way of communicating (clapping and smiling when, screaming when mad, etc.). For the past 3 years, she has had therapist's visit the house at different times of the day, but now, she has the therapist's working with her during the morning hours when she's in school so she's been very tired after school.

12/17/04

It's December 17th - Kaitlyn is 3 years old today - 36 inches long and weighs 28lbs. She has gained 5 inches and 5 pounds over the past year, which has been a great year! She received "little" braces for her feet that look like boots. The braces help support her ankles and feet as she learns to stand without support. She cannot stand without leaning up against something or holding on to something, but her balance has improved significantly and she's able to pull herself up from a lying position if she holds on to our fingers. Her abs and legs are very strong. She has not learned how to crawl on her hands and knees, but she sure knows how to roll very fast and has no problem getting around by rolling all over the place. She's doing very good with eating orally, but we're still in the "teaching" phase so the g-tube continues to be utilized for feedings while we try to get her to learn to swallow food orally. 2005 will find us focusing on getting her to feed orally so we can remove the g-tube, trying to promote her to communicate in one form or another (verbally or via sign language), and pushing her to become mobile by walking/crawling. As I mentioned in the October update, the "Birth to 3 program", which has provided her with home visits for physical therapy, speech therapy, occupational therapy, and an eating specialist, is no longer available since she's 3 years old. She will begin going to school beginning January 3rd and will be obtaining a new "team of therapist" to continue working on her development. The current "therapist team" reported that Kaitlyn is making great strides in development over the past 6 months and encourage the school to keep "pushing" her to continue to develop. Currently, she's at a 12 months (1 year) old development level for her ability to move around, eating, and speech. However, she's making quicker/larger progress than she ever has.

She continues to be a very happy child, as you can see in her pictures, and we look forward to what the next year brings.
Colleen, Emily, Kaitlyn, and myself want to thank everybody for thinking about us and being so supportive over the last 3 years!

10/7/04

Kaitlyn will be 3 years old in December and the "Birth to 3 program", which has provided her with home visits for physical therapy, speech therapy, occupational therapy, and an eating specialist, will no longer be available since she'll be 3 years old. She will begin going to school in January and will be obtaining a new "team of therapist" to continue working on her development. The current "therapist team" had a meeting last week with the school in preparation for the hand-off. They reported that Kaitlyn is making great strides in development over the past 6 months and encourage the school to keep "pushing" her to continue to develop. Currently, she's at a 12 months (1 year) old development level for her ability to move around, eating, and speech. However, she's making quicker/larger progress than she ever has. She's finally starting to eat baby food via mouth and we have reduced the number of daily feedings that occur by G-Tube. The ankle braces are providing great support for helping her stand and she's beginning to be able to stand on her own with minimal support. She's still rolling all over the place and not really crawling or walking, but when she sees something she wants, she can get there in a heartbeat by rolling. As far as speech goes, she still "babbles" and is not communicating verbally, but she is making progress with sign language and is starting to tell us no, yes, I want more, I'm all done, and I'm sleepy. All-in-all, things are moving along great - she's happy, laughs a lot, is stubborn at times like any other child, and she's getting big. I'll be taking pictures soon so check back to see how big she's getting and how her curly hair continues to grow like a weed!

7/13/04

Kaitlyn had her follow-up visit to the hospital in June and they are not concerned with the trach still being a very tiny open hole that hasn't closed completely. They would like to give it some more time and see what happens. This week she went to get fitted for braces that will be ankle high and placed on both feet to help provide her with support in efforts of helping her learn how to stand by herself and walk. Currently, she can stand if she's supported up against an object that she can lean on when she gets tired, but her feet are not stable enough to allow her to stand on her own. The braces will provide her with additional support to help this development process and she will be receiving them the week of July 19th.

5/24/04

Actually, not much has changed with Kaitlyn since the trach came out. The trach hole is still open (the size of half a penny) and she has a follow-up visit to the hospital in June. We're assuming they are going to want to surgically close the trach hole since it's not closing completely by itself. She's 2 & 1/2 years old now and is still as happy as can be. She's still not interested in eating via mouth so we continue to utilize the G-Tube for feedings, and she's rolling all over the place, but not able to crawl, walk, or talk. Her physical and speech therapists continue to visit her weekly in hopes that she will develop skills to walk and talk. She's getting too big to be carried around everywhere so we're going to start looking into other modes of transportation (chairs, etc.) for when we take her places.

11/18/03

The trach has now been out for 8 weeks and let me tell you something, we might have had 21 months of silence where we couldn't hear her making any noises because of the trach, but she sure is making up for that time very quickly by being as loud as she can be. She screams loud, she cries loud, she snores loud, and we wouldn't want it any other way. After so many months, it's nice to hear these sounds. Kaitlyn will be 2 years old on December 17th and now that all of the equipment is no longer attached to her, she's starting to realize that she can move around a little bit. She's learning how to move on her back and is rolling all over the place. When the trach was in, she wasn't able to do this because she was hooked up to equipment most of the day and all night.
We are working on getting her to crawl on her hands and knees, and are feeding her more by mouth in hopes that the G-Tube will not be needed very long into 2004. We do not know how she will be mentally or physically at this point in time, but we're working with her to help her grow and develop at whatever pace she is comfortable with.

9/24/03

We had a successful trip to the hospital and as of 1:10 pm, the trach has been removed and she's breathing on her own. She will be staying the night in the hospital for observation and coming home tomorrow morning. After 21 months of living with the trach and all of the equipment and suctioning that goes along with it, we are very excited that it has now been removed.
The last step is to now begin feeding via the mouth so we can get the G- Tube removed. At 1:10 pm today, the trach was removed.

9/16/03

We will be returning to the hospital on Wed (9/24) to have the trach taken out and this time there are no procedures or operations associated to it so it should really come out. This is a non-surgical procedure where they simply remove the trach and apply a "dressing" on the very small hole in her throat. She will stay in the hospital for that day and overnight just to make sure everything is going ok. She has already passed her sleep study where the trach was "capped" for the entire night, and while at home, the trach is "capped" the entire day and she's doing just fine so we don't envision any problems.

9/2/03

We went to the hospital August 29th and when they did the "bronch" they saw a small amount of excess skin (granuloma) had developed again because of the trach rubbing up against her airway. They removed the excess skin via laser which caused her airway to become swollen and therefore they were not able to remove the trach.

8/15/03

Kaitlyn goes in at 11:00am on August 29th for her bronch - if her airway is still free of the skin they removed via laser a few months ago, and they don't have to laser anymore skin off, then they will remove the trach that day and she will stay in the hospital overnight for observation before coming home the next day. 20 months later and the end of the trach and all of the equipment in our house is finally starting to become a reality.

8/7/03

Kaitlyn had her sleep study last Thursday (7/31) where they "capped" her trach so she was sleeping and breathing without the help of the trach. The results came back today and were normal so the next step is to schedule the "bronch" (where they look down her throat to make sure the excess skin they removed via laser a few months ago still looks ok) and if so, then the trach can come out. I'll let everybody know once the date is scheduled, but they mentioned that they hope to do it in August so we are very excited.

6/17/03

Kaitlyn was doing so well with the speaking valve (which allows air in through the trach, but she had to breath out through her mouth) that the doctors took the next step and placed a "cap" on the trach to see if she could breathe air in and out on her own through her mouth and she passed with flying colors. We are now in the process of "capping" the trach a few times a day so she can use to breathing through her mouth and increasing her lung capacity. If all goes as planned, we will be having a "sleep study" at the end of July where they cap the trach for an entire night while she sleeps so they can monitor her and see if she's ready to have the trach removed. If she passes that test, then we've been told they would remove the trach in August. After the trach is removed, the last item to work on is feeding through the mouth so we can eventually get the feeding G-Tube removed.

5/27/03

Kaitlyn is now 17 months old and the plastic surgeon is satisfied with his work from surgery #1 and surgery #2 and does not need to see Kaitlyn for one year. Surgery #3 was on March 19, 2003 and it was a piece of cake compared to the previous 2 surgeries. Kaitlyn's airway has opened significantly, and the laser surgery was done to remove some excess skin from the airway to ensure that it's open to its fullest extent.
On April 15, 2003, Kaitlyn had a speaking valve put on her trach which allows her to breathe in through the trach, but the valve only allows air to come in, so she has to breath out of her mouth and nose. This is the beginning of "training" her to breath through her mouth and nose instead of her trach. She made a very funny face the first time she heard noises coming out of her mouth, and has not stopped making noises since it's been on.
We will be returning to the hospital in July 2003 for what we hope is a final breathing and sleeping evaluation, and if all goes well with that, then the trach will be scheduled to be removed with surgery #4 in August, and then all of the equipment that's been in our house attached to Kaitlyn will be gone. This is HUGE because as you can imagine, at 17 months old, she's trying to move around and grab items, but being hooked up to the equipment drastically reduces her mobility. We realize that she's going to be developing late, but the sooner the equipment gets taken away, the less time we have to worry about catching up.
The last step after the trach is out will be to get her feeding through her mouth so we can get the G-Tube removed.

1/7/03

We arrived at the hospital at 8:00am on Monday (1/6) and they started surgery at 9:15am. They finished surgery at 4:30pm and we finally got to see her at 5:30pm. The first thing they did was look as her airway and the doctor said everything looks good, but they will need to do a laser surgery to open the airway a little bit more. The good news was he doesn't see any reason why we shouldn't be able to have the trach removed within the next 6 months. The correction of the cleft palette took about 3 and a half hours, and then they worked on fixing the structure of her ears which took another 3 hours. Then they performed a hearing test on her and she passed all 5 of the tests just fine. She has bandages on both ears as well as a head wrap that will stay on for 1 week. To protect her stitches in the palette and her ears, they put arm restraints on her so she is not able to shove anything in her mouth or touch her ears.
Basically, for the next 4 weeks, she won't be able to bend her arms and let me tell you, this make her very mad. She lost a significant amount of blood during the procedure and ended up receiving 100 cc's of blood, and since she was inverted when the worked on her palette, her face is very swollen and red. She is not a happy camper right now and is on Morphine to help reduce the pain, and she's going to stay in the hospital until Wednesday or Thursday of this week I'll send an update in few days so everybody knows how she's doing....Todd

12/25/02

Sorry for the delay in updates! Software problems since mid-summer, so I couldn't republish (for those of you who had asked!)

12/17/02

It's December 17th and Kaitlyn is 1 year old today. The past year has been interesting to say the least, but overall, things are moving along as best as could be imagined. She had her surgery #1 to correct her fingers and toes in August, and has been monitored very closely by numerous doctors over the past year. Surgery #2 to correct the cleft palette is scheduled for January 6th, 2003. The palette will need to heal for a few months before they'll look at surgery #3 and whether or not they can remove the trach and
let her breathe through her mouth. After the palette is fixed and the trach is out, then they will focus on feeding orally and removing the g-tube.
We've adapted to life with all of the equipment and are having a blast
watching Kaitlyn develop, but we can't wait until the equipment is gone and she's able to move around without being attached to numerous hoses and machines. She's a happy baby and we look forward to what the next year brings.
Colleen, Emily, Kaitlyn, and I want to thank everybody for thinking about us and being so supportive over the last year!

12/10/02

Kaitlyn is doing very well following surgery #1 which occurred in August. Both of her extra digits on each hand have been removed, ear tubes were inserted to help minimize ear infections and other problems once she starts feeding via mouth with the open cleft palette, and she had her toes separated that were webbed together on each foot. Her hands and feet look very good.

08/13/02

We arrived at the hospital at 11:00 and they started surgery at 1:15. They finished surgery at 8:30 and everything went well. Both of her extra digits on each hand have been removed and a small bandage covers the area where the extra digit used to be. She had ear tubes placed in to help minimize ear infections and other problems once she starts feeding via mouth with the open cleft palette. She had her toes separated that were webbed together on each foot and has full length leg casts on each leg that will be on for approximately 4 weeks. She's a little cranky right now, but who wouldn't be
after all of that!

Kaitlyn is now 6 months old and weighs 12 pounds. She is doing very well and continues to amaze the Geneticists with how alert, active, and responsive she is. She has her first 2 teeth on the bottom and has 2 very active hands that seem to grab everything, including her feeding "G-Tube" which has come out of her belly twice and caused us to return to the hospital to have it put back in. I guess that's why the "trach tube" for her breathing is held in place with velcro around her neck because if that would come out it would be a very bad situation. Not much is happening since we're just waiting for the surgery to occur on August 12th, but if something comes up, I'll update everyone!

Kaitlyn is now 4 & 1/2 months old and weighs 10 pounds. She continues to gain weight now that she's been on the automatic feeding machine for a while. We originally had a surgery date of July 15th, but we were informed this week that the plastic surgeon is going on vacation so our new date is August 12th. She is doing very well and continues to amaze the Geneticists with how alert, active, and responsive she is. Now that it's getting warmer, she's able to utilize her time off of the equipment by taking walks outside. Not much will change between now and the surgery date, but if it does I'll update the site.

Kaitlyn is now 3 months old: After our first complete week of regularly being on the feeding machine with no manual hand feedings occurring, Kaitlyn put on the most amount of weight (10 ounces) she has ever put on in a week and now weighs in at 8 pounds 12 ounces. The machine has helped by constantly providing her food throughout the day while also reducing the throwing up since we're not having to manually pour the large amounts of food into her belly. We had a visit to the plastic surgeon and he reviewed x-rays to look at the bone structure in her hands and feet and everything looks good so he should have no problem during the upcoming surgery. He measured the cleft palette gap and sure enough, it has closed some. He mentioned that they do continue to close after birth, but they close at such a slow rate that it wouldn't fully close on its own until she was in her early 20's. The plastic surgeon also measured her jaw and its growing nicely and pulling the tongue forward so there's hope that the "trach tube" will not be required long term. Our next trip to the plastic surgeon will be for surgery to:

(1) Insert Ear Tubes - due to her Cleft Palette she will have tubes placed into her ears to help the drainage and prevent ear infections.

(2) Toes - she has an extra toe on each foot that will be removed and her 2nd and 3rd toes which are connected will be separated. They will take skin from the groin area to use when the toes are separated to ensure that there's enough skin for each toe. She will be in casts from her knee to her foot on both legs for a month.

(3) Fingers - she has an extra finger on each hand that will be removed and her hands will be bandaged for 2 weeks.

This surgery is not "high risk", but it is very lengthy and takes between 6 to 8 hours. The surgery will occur in another 2-3 months and we'll keep you posted as the time gets closer.

The automatic feeding machine arrived last Wednesday and is working beautifully. It slowly gives her 25 ml's per hour overnight and we only have to wake up periodically to suction her for 5 minute periods, which sure beats getting up 3 times overnight for 60 minutes each time. Kaitlyn officially slept in her room for the first time on Friday night, but the only catch is that she needs to be inclined to eat so she has to sleep the entire night in her bouncy chair and not the crib or cradle. Regardless, the fact of the matter is that we no longer have to wake up overnight to pour food into the G-Tube since the machine does it for us, she's able to sleep in her own room, and Colleen and myself no longer have to sleep on the couch anymore. We're still wondering why it took a month to go by before we found out about this, but I guess it's better than a few months going by and then finding out about it!

Kaitlyn had a major breakthrough over the weekend and has begun to suck on the pacifier. This is a major accomplishment since we've been trying to get her to take a pacifier ever since they removed the ventilator tubes out of her mouth. We will continue to work with her on the pacifier and hopefully will be able to begin to start providing her with oral feedings, but we'll have to wait for the Speech Therapist to make that decision so until that time we'll stick with pouring the feedings into the G-Tube. We also had our first visit to the "Trach Clinic" last week. The "Trach Clinic" is held every 3 months and children with Trach's go to the hospital and spend 4 hours visiting with all of the doctors that are associated with the child. After we told the doctors that we were feeding Kaitlyn every 3 hours around the clock they seemed shocked to find out that one of us was actually sleeping on the couch next to Kaitlyn and waking up to an alarm clock throughout the night to feed her. Needless to say, the machine is being ordered this week and should arrive soon.

Kaitlyn was 2 months old yesterday, things are moving along, and we've gotten into a good routine around the house. Kaitlyn has been on Zantac for 2 weeks to help reduce her vomiting and it not only has helped reduce the number of times she vomits, but it also helps the amount that she vomits when she does vomit. She's up to 65 ml's every 3 hours and Colleen and myself are still sharing the duty of sleeping on the couch while Kaitlyn sleeps in the living room. Once she reaches approximately 75 ml's, Kaitlyn will be able to sleep through the night without having to eat and that's when she'll move from the living room to her room and we'll get off of the couch. Kaitlyn already sleeps through the night and since she has the G-Tube for feeding we don't have to wake her up to eat so feeding every 3 hours isn't hard on her. Physical Therapy and Speech Therapy made their weekly visit last week and created a special chair/bouncy seat for Kaitlyn to sit in face down. They placed foam on a chair/bouncy seat and cut out a portion of the foam to allow her trach equipment to fit through so she can sit face down in hopes of that helping the jaw and tongue pull forward due to gravity. They were very impressed to see that she can "scootch" forward when on her belly (due to her very active feet kicking and pushing away) and said that's a very good sign since the "SLO Syndrome" often causes children to not thrive or move. Here's another interesting issue - her cleft palette seems to be closing. I know it sounds weird, but Colleen and myself both have seen a significant reduction in the size of the opening of the cleft palette. Kaitlyn's primary nurse (Debbie) from Children's Hospital came out for a visit last week and she said it has absolutely gotten smaller. The entire roof of her mouth used to be open like a horseshoe shape, and now it's barely a slit that a finger could fit through. We've talked to several nurses and doctors and they say they've never heard of the tissue being able to generate after birth, but we're telling you it's closing. The Plastic Surgeon said he would compare the pictures of when she was in the hospital with the way it looks when we go back for our visit March 8th. We'll keep you posted. (Please Note: I have assured Todd that the closing of the palette is just one of the things we've all been praying for. No real mystery here...just a miracle!)

Kaitlyn went to the Hand Clinic last week and she now has a finger splint

on each index finger. Those 2 fingers were bent outwards so they placed a

splint on them to help them grow straight. She also visited the Geneticists

last week and is now taking 0.4ml's of Cholesterol three times a day. For

my fellow Pharmacists - have any of you ever received an Rx for:

Cholesterol - 120ml - 0.4ml 3 times a day? I didn't think so. We have an

Rx bottle at home full of Cholesterol. It has a mix well label on it and it

looks exactly like what you would think Cholesterol looks like - it's thick

and sticks to the walls of the Rx bottle and slowly slides down.

Kaitlyn took a quick trip back to Children's Hospital yesterday to see the Plastic Surgeon and have some pictures taken of her head, cleft palate, fingers, and toes.

Here's a quick rundown of what lies ahead for 2002 and the current issues that we know about:

(1) Ear Tubes - at 3 months of age: due to her Cleft Palate she will have tubes placed into her ears to help the drainage and prevent ear infections

(2) Toes - at 6 months of age: she has an extra toe on each foot that will be removed and her 2nd and 3rd toes which are connected will be separated. They will take skin from the groin area to use when the toes are separated to ensure that there's enough skin for each toe. She will be in casts from her knee to her foot on both legs for a month.

(3) Fingers - at 6 months of age: she has an extra finger on each hand that will be removed and her hands will be bandaged for 2 weeks. The toes and fingers will all be done in one procedure by the plastic surgeon.

(4) Cleft Palate - at 1 year of age, the plastic surgeon will correct her cleft palate.

(5) Microcephaly (small head) - she started out in the 10th percentile for head size when she was born and this number has dropped to the 5th percentile so they will monitor her head development throughout the year.

(6) G-Tube - Speech Therapy is making weekly visits to the house to monitor her progress with swallowing and tongue movement. She will have the G-Tube in place until she can actually feed via the bottle. The earliest the G-Tube could be removed is the end of April so we have a few months to teach her to swallow and control her tongue.

(7) Tracheotomy - As mentioned in a previous update, the earliest the trach could be removed is when she's 1 and ½ years old so there's not much that's going to happen this year with the trach other than adjusting the size of the trach tube as she grows.

(8) Smith-Lemli-Opitz Syndrome - During the year 2002, the Geneticist is going to closely monitor her to see how she develops. The first year of life is the most critical as far as development goes and we'll get a better understanding of how she's going to be in the long run as we watch her develop during her first year of life. They are going to begin giving her Cholesterol in February since the development of all internal organs, and more importantly, brain growth requires Cholesterol to be present. They hope that increasing her Cholesterol will reduce the severity of the syndrome and they will only be providing it during the first year of life so there should be no long-term issues with blockage of arteries and the other issues that are known with high Cholesterol.

The Geneticists called tonight and informed us that Kaitlyn has been diagnosed with the syndrome listed below. As you read this, you will see that there are various degrees of this syndrome and to what degree she has it will not be seen until we see how she develops over the first year of life. She does have a high cholesterol level, which is only seen in 10% of these children, but that's a good thing because the lower the cholesterol, the worse the degree of the syndrome.

SMITH-LEMLI-OPITZ SYNDROME (SLOS)

The Smith-Lemli-Opitz Syndrome (SLOS) is a genetic disorder that affects the development of children both before and after birth. The syndrome was first described in 1964 in three boys with poor growth, developmental delay, and a common pattern of congenital malformations including cleft palate, genital malformations, and polydactyly (extra fingers and toes). In 1993 scientists discovered that children with SLOS are unable to make cholesterol, an essential nutrient that is not provided by the mother to the baby before birth. Because the body also makes most of its own cholesterol after birth, children with SLOS continue to have trouble with development and general health after birth. The discovery of abnormal cholesterol metabolism in SLOS has made possible not only a laboratory test for more precise diagnosis of SLOS, but also provided a rationale for treatment of affected children.

In addition to growth retardation and developmental delay, many different malformations have been described in SLO/RSH. The most common defects are:

- Microcephaly (small head)

- Extra fingers or toes

- Apparently low-set ears

- Small, upturned nose

- Webbing between 2nd and 3rd toes

- Abnormal palmar creases (usually single)

- Hypospadias (genital malformation in boys)

- Undescended testicles

- Blepharoptosis (drooping eyelids)

- Micrognathia (small chin)

- Hirschsprung disease (absent nerves in colon)

Some children will have only one or two minor malformations, such as webbing of the toes and cleft soft palate, whereas others will have almost all of the defects listed above. Because of the possibility of internal malformations, patients with SLOS should be evaluated carefully at birth, especially for heart and kidney defects.

Most children with SLOS have feeding problems and "failure-to-thrive." Common feeding problems include trouble sucking and swallowing because of weakness, cleft palate, microgastria (abnormally small stomach), reflux, persistent vomiting, and pyloric stenosis. Other causes of failure-to-thrive may be internal malformations such as heart and kidney defects, Hirschsprung disease, or, more rarely, chronic liver disease. However, even children who are vigorous and feed well do not grow normally and tend to be small as children and adults. Almost all SLOS children are born with small brains and have various degrees of slow development and mental retardation. Although not all children with SLOS learn to walk and talk, many acquire good language and can learn skills. However, independent living as adults is unlikely. Lifespan can be limited by serious internal malformations, but with good nutrition and medical care, a normal lifespan is possible.

Although there had been many observations over the years linking abnormalities of steroid and cholesterol metabolism with SLOS, only in 1993 did scientists make the important discovery that children with SLOS have a metabolic disorder that prevents their making cholesterol in amounts sufficient for normal growth and development. At diagnosis, children with SLOS typically have cholesterol levels less than 50 mg/dl (normal is greater than 100 mg/dl) and abnormally high levels of a precursor of cholesterol, 7-dehydrocholesterol (7DHC). The deficiency of cholesterol, which is an essential building block of all cell membranes and the white matter of the brain, appears to be caused by abnormally low levels of the enzyme "7DHC-reductase," which converts 7DHC into cholesterol. SLOS children with the lowest cholesterol levels tend to have the most severe forms of the disorder and often die at birth or in the first few months. Although about 10% of children with SLOS have normal or near normal cholesterol levels.

SLOS is an inherited autosomal recessive Mendelian disorder, like cystic fibrosis and sickle cell disease. In autosomal recessive diseases, both parents are carriers of an abnormal gene but show no physical evidence of the disorder because a paired normal gene is protective. However, if a child inherits two copies of the same abnormal SLOS gene, one from each parent, then SLOS will occur. On average, there is a 1 in 4 chance that a child will inherit only the abnormal genes from two parents who each carry the SLOS gene. SLOS is one of the most common autosomal recessive disorders. In some regions, the disorder may occur as often as 1 in 10,000 births. As a result, families in which there are cousins or other relatives with SLOS are not uncommon. Carrier testing is now possible by measurement of 7DHC or enzyme levels in cultured cells, but a more accurate DNA test is anticipated in the near future.

The major medical problems of children with SLOS are in the areas of feeding, growth, and development. In addition, there may be other serious medical problems caused by one or more malformations, such as heart or kidney defects. With the discovery that SLOS children cannot make adequate amounts of cholesterol, there is now hope that added dietary cholesterol will help make the children with SLOS grow and thrive better. As a result, many children and adults with SLOS are being given supplementary cholesterol, either in a natural form, such as egg yolks and cream, or in the form of purified cholesterol given as part of several research protocols. Although early results with cholesterol supplementation are encouraging, much more study is needed to determine the benefits and possible risks of cholesterol supplementation.

Kaitlyn arrived home at 11:30am today. We are adjusting to life with all of the equipment, but big sister Emily is very happy to finally have Kaitlyn home. We still have not heard from the Geneticists on the final blood results, but since he said Friday or Monday, we're hoping to hear from him on Monday.

Kaitlyn is 1 month old today and is still in the ICU, but we have received clearance and KAITLYN WILL BE COMING HOME FRIDAY AT 10:00AM!

We have our 24-hour care today where we get put into a room with Kaitlyn and it's just us watching and taking care of her. We got a "home nurse" that's accepted the position for Mondays, Wednesdays, and Thursdays from 8:00am-4:30pm. Kaitlyn is doing very good with the G-Tube that was put in on Monday and she has begun to feed again. She no longer has anything in her head now that the feeding tube has been removed from her nose. The last blood result did not get run last week so we won't be hearing anything until Friday or Monday. We've been told that we will be able to go home on Friday or Monday, but Monday is more likely because they don't like to discharge people prior to the weekend.

Well it's Monday and Kaitlyn has been in the ICU for 4 weeks. She has not made significant progress with her ability to swallow so she had a "G-Tube" put in her belly this morning. She's on Morphine for the rest of the day and is resting very comfortably. The "G-Tube" is a small tube that sticks out of her belly and allows us to pour the baby formula directly into her stomach. We will continue to work on getting her to swallow and hope the G-Tube will only be needed for a few months. So now she has the tracheotomy allowing her to breathe and the G-Tube allowing her to be fed. We've completed all of our training on tracheotomy care as well as the training of all her equipment that she'll have here at home. Needless to say, we're not going to be able to travel anywhere in the near future due to all of the equipment. The last blood test they were doing for a specific syndrome associated to cholesterol still has not come back, but they did tell us they are doing the test a second time and will present us with their findings once they have the results back. The results were supposed to be back today, but as of 7:15pm we have not heard anything. As far as we know, they are going to try to release her from the hospital on this Friday, but they need to confirm that the home nurse has been assigned and accepted the position. As mentioned in a previous update, the tracheotomy has to be connected to a machine that provides humidity so the air she breathes through her neck is moist just as it would be if it were taken through the nose or mouth and directed into the lungs. She does get 2 hours a day where she can wear a device called a "nose", which is basically a filter that fits over the tracheotomy that warms the air that she breaths. Due to that limited time and the amount of equipment that she relies on, our time will mostly be spent at home and therefore we will have a home nurse who visits 3 days a week thus allowing us to get out of the house while she takes care of Kaitlyn. We will also be visited weekly by numerous nurses such as Speech, Physical Therapy, Occupational Therapy, etc.

I will keep you all posted as to the results of the final blood test for the

cholesterol syndrome as well as the status of her being discharged on Friday.

18 days in the NICU: Kaitlyn had her eye exam and the streak of good news continues since they are just fine! Colleen and I met with "our team", which consists of a tracheotomy nurse, home nurse, social worker, and insurance specialist yesterday to start to get things in line for leaving the hospital.

They are targeting a date of January 17th for Kaitlyn to come home if she is

medically stable and can feed. The speech therapist is still working with her to see if she can suck so she can start to feed via the bottle. Colleen, myself, and our wonderful neighbor Tracey will be undergoing heavy tracheotomy training over the next 2 weeks. Not only do we have to learn how to care for the tracheotomy, but we have to become familiar with the equipment and monitors that Kaitlyn will be attached to when she's released. For example, the tracheotomy will be attached to a machine that provides humidity to make the air that she breathes warm. (NOTE: If you look at her recent pictures, you'll see that there's a blue tube leading to a "dome" that fits around the tracheotomy and that's the humidity that she's receiving.) Also, when she's at home sleeping she will be on a machine that will monitor her breathing. Our team of nurses also told us that Kaitlyn and her daddy

have made history in Children's Hospital! They informed us that we are the

first parent-child combination to have matching trach's. (for those of you who don't know I had a tracheotomy when I was 13 years old). The Geneticists has been looking into 2 more conditions over the past few weeks and don't ask what they are because after what we went through when they mentioned Trisomy 13 to us, we told them to not even tell us what they were looking at because we don't want to worry ourselves looking up information for conditions she doesn't have. Anyway, the blood results of these 2 conditions should come back next week with one coming on Monday and one on Friday.

They did the ultrasound of the kidneys yesterday morning and everything looks good. It was a very busy day for Colleen and myself as we talked to "Speech Therapy", "Occupational Therapy", "Plastic Surgery", "Social Workers", and the "Geneticists".

"Speech Therapy" - They are responsible for evaluating whether or not she's going to be able to swallow and feed without the use of a GI tube. They said her tongue does come forward, but she's very hesitant to allow anything into her mouth. (Wouldn't you be as well if you had a big blue ventilator tube down your throat for 2 weeks?) They are making daily appearances and have showed us how to stimulate her to open her mouth in hopes that she will begin sucking and swallowing. Once Kaitlyn shows that she is sucking and swallowing, then they will introduce a bottle and see how she does with that.

"Occupational Therapy" - Due to her being heavily medicated over the past few weeks she hasn't done a lot of moving so "OT" will be making daily visits now that she's off of the medication and the ventilator to help build her muscle tone and range of movement.

"Plastic Surgery" - They will most likely repair her palate between 9-12 months of age and they will x-ray her fingers and toes between 6-9 months of age to see if there's any surgery required or not.

Colleen and myself continue to learn about tracheotomy care and as of now we are moving right along and both of us have successfully suctioned Kaitlyn.

Kaitlyn's earliest "home from the hospital" date will be late January.