Exercises at home
Swallowing and feeding exercises
Swallowing and feeding exercises
We started the first feeding trials with a speech and language therapist when Alicja was 8 month old. Bottle feeding never worked for her (she was choking on any tiny drop of milk) but now, she was big enough to try spoon feeding with pureed food. A couple of feeding trial sessions gave us important tips on how to feed Alicja and avoid choking. Once we gained confidence in what we do and we started to believe that our daughter may one day feed orally, we started our everyday home feeding trials.
We try to spoon-feed Alicja with yogurts, soups and baby pureed food. We are glad to say that our little girl loves new tastes and prefers vegetables rather than sweets :-) We know by now that Alicja is able to swallow. The proof: we saw carrots or blueberries that she had orally appearing in her PEG tube :-) However, unfortunately a big amount of feed comes out through her nose, so she would have to be fed for a couple of hours in order to have a full meal. Another problem is over sensitivity Alicja’s hands and mouth. She is just afraid to have food in her mouth and usually doesn’t accept the spoon either. She is much more confident in taking a dummy dipped in food. As we know that healthy children try to “examine” any food with their hands before they eat it, we try to teach Alicja to play with food. Since our daughter is able to sit, she also sits with us in a high chair at the family dinner table. All our effort starts to bring results; Alicja now enjoys her little fingers being dipped in ketchup, soup or mash potatoes and she starts to accept little amounts of spoon feeding. However, she still doesn’t want to put her fingers dipped in food in her mouth or to take a spoon in her hands.
Visual stimulation
Our sitting room is full of toys and books, all of them in bright colors and high contrast to stimulate Alicja’s vision. When choosing the toys we follow the visual impairment teacher’s advice but also, and most of all, our own instinct. Luckily, our daughter’s vision doesn’t seem being that bad. She obviously has coloboma and at least 50% optical nerves damage but she is very well learning how to use the rest of vision she has. She reaches for toys and smiles when she sees them. She likes “reading” books. She just loves lights, especially at the shopping malls; shopping is actually one of her favorite pastimes :-) Of course Alicja is too small at this stage to know what her vision restrictions will be; will she be able to see far away objects and to recognize herself and other people on the pictures, will she learn how to read and write… These are the questions that we are not able to answer yet.
Hearing stimulation
Unfortunately, Alicja’s hearing is not at all as good as her vision. The ABR hearing test, performed at the hospital when she was 2,5 months old showed a profound hearing loss (90 db in one ear and no response in the other one), which is close to complete deafness. The only way our daughter could understand and learn speech in the future would be an insertion of a cochlear implant. However, it will be another year or two before we will even know if Alicja’s medical condition and ear structure will allow her to have an implant inserted.
Alicja received her first hearing aids at the age of 3,5 months. Due to our daughter’s profound hearing loss, they are very big and heavy. It’s also extremely difficult to fit them properly due to the outer ears malformation. As results of all that, the hearing aids keep whistling and falling out. Both Alicja and us hate to put them and to use them. Especially whistling is very stressing for us and gives no hearing benefit to the child.
Despite the problem with hearing aids and despite Alicja’s profound hearing loss, she sometimes reacts to sounds, for example she turns her head when we place her favorite toy with a sound behind her. She is also very good at feeling the musical rhythms. When the music is on she taps her leg on the floor to the music. To further stimulate Alicja’s rhythm feeling, we take her sometimes in our arms and organize little home discos :-) She enjoys them a lot.
Lámh sign language
Lámh sign language is a manual sign system used by children and adults with intellectual disability and communication needs in Ireland. Due to the profound hearing loss, this will probably be the first language that Alicja will “speak”. As this language is obviously completely foreign to us parents, we are planning to do a parents’ course, so we can start teaching communication to our little girl.
Other activities
Bumbo seat
Bumbo seat is an infant chair for children who can hold their heads but are not yet able to sit on their own. It is very popular among parents of children with special needs as it’s safe, practical and not so expensive. It largely improves tummy and back muscles as well as helps the balance. Within four months of using the bumbo, at the age of 15 months, Alicja started to sit unsupported.
High chair
Once our little girl started to be able to sit on her own, we bought a high chair, which is a very different experience for her than a bumbo. When she sits on it, she is as high as her mum and dad and she can now sit at dinner table with the whole family. On her high chair tray, she has her baby plate and spoon with some food on them in case she would like to test the food with her fingers :-)
However, bumbo will probably remain her favorite place to sit for a long time; especially that it has this lovely tray which is one of Alicja’s favorite toys :-)
Swimming pool
Sessions at the swimming pool are good for any infant’s development as young children still unconsciously remember that they have been swimming in the womb before they were born. Water is for them quite a natural place to be :-) For special needs children it has additional advantages, such as improving body coordination and skills and feeling more freedom in their movement (many handicapped children start to learn how to walk at the pool). Due to different surgical procedures and hospital stays, Alicja has only started to go to the pool at the age of 13 months, but since then, we try to go regularly. Even though we have to be extra careful with our daughter’s mouth and ears, we all enjoy swimming sessions with Alicja. She loves water and, with every session, she gains more and more confidence. She feels more and more free and happy in water.