Macsen's speech therapist threw out a possible reason Macsen doesn't talk yet. She said some of the mannerisms I have brought up are consistent with Apraxia.
"Childhood apraxia of speech (CAS) is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words." (From the American Speech Language Hearing website.)
I have been looking here http://www.apraxia-kids.org/ for more info as well as doing what I always do when we get a new diagnosis - consulting Dr.Google, reaching out to my heart community. I"ve already "met" several heart mom's whose little ones are also battling Apraxia.
Sigh. I hope she's wrong and Macsen is just stubborn and any day now he will just magically start spouting out full sentences. But a lot of the symptoms fit. Very little babbling. No mimicking sounds. Eating issues. Normal/age appropriate understanding of verbal language but severe delays in oral communication. Today I told him we could go get Daddy if he would just say Dada - he tried but all that would come out was Ma Ma and he started to get upset, doing his sign for "Daddy" and pointing at the door.
He's a little young to be officially diagnosed but I will discuss it tomorrow with his other speech therapist. I will also talk to his neurologist about it next week.
Treatment includes intensive speech therapy - 1 hr/day 3-5 days/week w/ a therapist experienced in apraxia. In severe cases some children need a communicating box that speaks for them. It is kind of rare so finding someone experienced is important. Also, I have been reading up on how the use of fish oil has been helpful for some children with Apraxia so I ordered the ones I found recommended. Hopefully his cardiologist won't say they're not good for heart kids - they do have blood thinning properties.
Macsen is also still coughing and snotty:(It has been 2 months now and even though his cough sounds ugly his pediatrician says his lungs sound clear. I am doing everything I can think of to get him well for his appointments/procedures next week. We really need some prayers. I'm so afraid we'll get all the way to Philly, he'll get his pre-op xray and they'll tell us he has pneumonia or something and all procedures are cancelled. We need answers. We need these tests so we can know what is going on with his brain, his heart, if his heart looks good enough to be a candidate for the 3rd surgery and when that will be.
The fundraiser went well at Nantuckets coffee shop. We met some amazingly nice people - the majority complete strangers- and they were able to raise several hundred dollars for Macsen. He was such a little charmer the whole night - waving to everyone, blowing kisses to say "thank you" and signing please if he wanted something. He also doled out hugs and smiles everywhere. He was just perfect and his sisters were very sweet too. The delicious hot cocoa and brownies helped, as did the products some of the vendors "sold" them for a quarter or a dollar - thank you Kristina from Perfectly Posh, Alex from Uppercase living, Angela from ThirtyOne, Nantuckets and everyone else who came out in support of our family. You are amazing humans
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