Welcome to Emma's
progress page!
After Emma came home, she slowly started making some progress. First she regained a gag reflex, then she started crying, trying to hold her head up, swallowing, and the list goes on! Now it seems like there is something new every day!
Therapy
Emma first started with therapy twice a week (1 hour of physical therapy and 1 hour of occupational therapy), and would last about 45 minutes for each session. She often times would get "overstimulated" and would have to stop. Although she would tire easily and wanted to be left alone, her therapists felt that she was making good progress and was motivated to learn so they increased her therapy to 4 days a week (2 hours of physical therapy and 2 hours of occupational therapy).
After a visit to Riley's Hospital for Children in June, Emma started taking valium to help relax her high muscle tone. This certainly has helped her relax, and has proved very helpful in the progress that she is making with her therapy. Now she can handle a full hour of therapy and can handle any position they put her in without getting upset!
Medical progress
On July 9, 1999, Emma had surgery to have a peg-tube placed in her stomach for feeding since she is still unable to eat orally. The peg-tube is a feeding tube that is approximately 8-9 inches in length and is held in the stomach by a "mushroom" shaped disk. About 2 months after the surgery, Emma will go back to have the "Mic-key" button put in. This button will have a flip-top opening and will be flush with her body.
Shortly after Emma's surgery we learned the results of her latest EEG, which indicated that her brain activity did not show any activity associated with seizures. Because of these results we have decided to wean her off of her Phenobarbital. Once her body is completely free of the phenobarb, she will have another EEG done. If the results remain consistent with her latest test, then she will not have to take the phenobarb any longer. However, if it indicates that there is some activity that is associated with seizures, she will be put back on the phenobarb to prevent any seizures in the future.
**Update 8/10/99**Emma's latest EEG indicated that everything still looks normal. Therefore, there won't be a need for her to go back on the phenobarb. YEAH!
**Update 12/3/99**Emma got her Mic-key button on 10/7/99. On 11/23/99, Emma had another swallow study done. The results of this test indicate that her swallow is safe enough to begin feeding her baby food and other purees. Although she is able to eat purees, she has not been given the ok for liquids. Unfortunately she aspirated the liquids into her lungs. At this point she is still pretty confused about the whole feeding thing (since she's never eaten by mouth it's pretty foreign to her), which causes her to get bored pretty quickly when eating by mouth. For these reasons, she has not yet been given the ok to be weaned from her g-tube (she would be unable to take enough food in by mouth to satisfy her nutritional/caloric needs). However, this has allowed us to intensify her oral therapy as far as feeding is concerned.
Emma's abilities
When Emma came home from the hospital, the doctors felt that she would not do any more than what she did at that time (which was very little). Now it seems that she is doing something new every day!
We have to brag a little because we are so proud of everything that she has accomplished and continues to try to do.
Here are some of the things that she can do/working on:
Holding her head up
Rolling from her tummy to her back
Tracking toys and moving objects (like her big sister) with ease
Gaining really good trunk control
Improving her hand-eye coordination (now she can reach for and grab what she is looking at)
Smiling and laughing (her favorite cartoon is Maisy the Mouse on Nickelodeon)
Her curiosity to explore is improving (she likes to feel hair and is bringing some objects to her mouth for exploration)
Talking and mimicking noises (she loves to be talked to and will talk back)
Playing mid-line (on a couple of occasions she has even exchanged a toy from one hand to the other)
**Update 8/10/99** Emma has begun to recognizie strangers, and she also sat up all by herself for almost 45 seconds the other day.
**Update 12/3/99**Emma is rolling everywhere now. She loves to be on the floor so she can go where she wants to go and play with whatever she wants to play with. She also belly-crawled for the first time on Holloween night! YEAH! She only made it about 4 feet, but she giggled and smiled the whole time like "look at me!" She continues to try to crawl, however, she can't seem to coordinate her arms and legs together. Currently, she will prop on her elbows and pull forward (causing her body to be on top of her arms), then she gets up on her knees (with her arms still underneath her). This causes her to plant her face into the carpeting!=) There is one good thing about this though...she has found that chewing on the carpeting is excellent for teething. YUCKY!!
New section!
Equipment
Emma has recently acquired some new equipment.
She now has splints for her hands made by Benik. Since Emma's hands are fisted the majority of the time, it was reccommended that she wear neophrene splints to help hold her thumb in the "hitch-hicker" position. This helps to stretch her hands allowing her to gain more control of them.
She now has a red jelly bean switch made by Ablenet. Although Emma has fairly good control of her hand-eye coordination, she does have difficulty activating toys that light up or play music. Typically the difficulties are caused by small activation buttons. The switch is a large button that can be hooked up to almost any toy, then when she presses the button she can activate the toy easily. This is great for cause and effect stimulation.
She now has a Columbia wrap-around bath chair. Once Emma started rolling everywhere, it became very difficult to give her a bath. Because she cannot sit up for extended periods of time and because of her g-tube, we were hesitant to use a "normal" bath chair for Emma (we were afraid she wouldn't be able to sit long enough for her bath and we were afraid her g-tube would get caught on a "normal" bath chair since they go around the belly). She really enjoys being able to sit up in the tub to look and play with big sister Abby.
Soon she will be getting a Rifton Prone Stander. This is a rather LARGE contraption that will allow Emma to stand in an upright position. The stander will be used for a number of reasons, one of which includes bearing wieght through her legs, ankles and feet. This will help her gain strength and it will help ensure that the bones in her legs, ankles, and feet grow properly.
She will also be getting AFO's (Ankle Foot Orthotics) to go allong with her stander. These will ensure that her ankles and feet remain in the proper position while standing.
We are also borrowing a Tumble Forms' Feeder Chair from her therapists. She uses this to sit in while we are working on oral feedings and somtimes she uses it to play with her activity gym.
Some other things that we are borrowing as well include a table that fits over her chair for her to play with her switch, and a Tumbleforms' Wedge and Half-roll. The Wedge and Half-roll have similar purposes, we use both of them to help Emma strengthen her arms while on her tummy.
The list goes on and on...As Emma's progress continues, we'll update this page with the latest information.
So stay tuned for further updates!
Here are some sites that contain educational information/support, equipment, and toys for parents with special needs children.
To learn about eating disorders and some of the factors involved, please click here.
To locate a "Zero to Three" program in your area, please click here.
If you'd like to read about other parents with special needs children, please click here.
To view Emma's bath chair (high-back wrap around), please click here.
To find out more information about Emma's Rifton Prone Stander, please click here.
To purchase toys and other stimulating devices for special needs children, please click here.
To view one of our other pages, please click on one of the links below.
Last Update 12/8/99