Lily's First Steps therapists. At the beginning of therapy Lily had muscle tone issues, lack of eye contact, feeding troubles.no reaching for toys. This was prior to Lily's diagnosis, but they knew things were not right. Bilateral coordination was difficult.
Placement of a feeding tube allowed Lily to get sufficient nutrients. Lily's disposition is much happier. She's begun to vocalize. She crawls and is coordinated. Lily has become very eager and assertive. Shiny, noisy, tactile toys are her favorites. Lily has begun to learn sign. Repetition is a huge help because motor planning is an issue. Doing things over and over really helps.
At the start Lily was rolling, but unable to sit unassisted. Very little midline strength. Lily is now 26 months old and can stand, crawl and they're working on pulling up to a stand and transitioning from sitting to standing. Lily gets PT twice a week along with other therapies throughout the week.
Lily wears orthotics to help her ankles not to rotate inward. This is similar to Whitney. With the braces, Lily tolerates standing much better.
Lily works on speech therapy twice a week as well. A large portion of the therapy is centered around feeding. At first Lily was very gaggy and actively fought eating. After 16 months of work, she is swallowing much better and eating has become something she enjoys. Upper body stability has helped her a lot in feeding. She's positioned better for eating and swallowing.
Lily has nice jaw stabilization and movement that will aid her in moving toward talking.
Feeding day after day is frustrating but keep at it. It will click with the child. Lily had a protein allergy that they had to work around to help her eat better.
Q: Fish Oil Supplements?
A: Effects are anecdotal. Some say it's of benefit others say there's no connection to improvement. Do not overdose with fatty acids. They are not water soluble and are more difficult for the body to clear out. This may reduce appetite because it stays in the system longer.
Q: Where to start with feeding?
A: Get a speech therapist, get a swallow study. Begin with oral stimulation. Gag reflex will be strong. The need to learn to work the tongue. Increase tongue motion and strength. The process is long but the result is valuable. Don't give up. Repetition is key.
Q: Are feeding tubes an easy way out?
A: This is a very personal situation that varies from child to child. Many need a tube to survive. Feeding then begins without food. Start with things like a wash cloth on the face. They need to gain comfort with oral touch and facial touch. Don't force the face and hands to start getting food in. Start with oral sensory exercises. Feeding is a marathon, not a sprint. G Tubes should be seen as an interim step not an end. G Tubes are better than a long term NG tube that runs down the throat. NG Tubes cause more gagging issues. It is possible to transition from a G Tube to full oral feeding.
Q: Hyperbaric Oxygen Chamber therapy?
A: The jury is still out on this. Some children respond well to this, but there haven't been enough studies to know the benefit. It is extremely costly. Some do see positive changes. But can they be maintained after the therapy. Do your homework before you make a decision on such a large investment.
Q: Where to start with speech?
A: Repetition is good but avoid "echoing." "Can you say dog? Dog." That's not true communication. Picture exchange communication can be a good place to start. Pictures of things the child needs or wants. Can be actual photos or drawings. Then move up to signs or words. This is a fine way to start even though it's not speech yet. Do labelling. Start with one word for an object. "Cup" Repeat and don't elaborate on it.
Remember that not each interaction has to be therapy. Don't let things overwhelm you. Just work things into your daily routine. Make it fit your life. Don't reschedule your entire life around therapy. It'll be too much. Pick goals for the week and focus, but don't overdo it. Just work it into your day.