The kids are sick again. Serena is worse. Her horrible cough is back and she is pale looking. Edwin's "looking" better, but his respirations are increased and needs to O2 while asleep. Both areon nebs and I am considering calling tomorrow to start them on Pregnisone.
I don't know how long it's going to take before their bodies can handle a cold, but the end seems no where in sight. It is extremely stressful when they are sick. I am constantly worried they will stop breathing while asleep. Thank God for monitors. I wish there was more I could do to help them feel better. They have scarred lungs, and I imagine it's going to take time before they are able to get through a cold without O2 and steroids. I wish they felt better...
In other news, I took EJ to an augmentative speech clinic through Boston Children's today. Since I have zero luck with having a consistent ST for him through EI, I took it upon myself to find someone to help him. Thanks to my wonderful friend Kelly, Tyler's Mom, I got a name of a ST through this clinic.
Even though he had a slight cough and the sniffles, Edwin did well. He demonstrated his vast array of sounds while babbling, and even attempted to say "horse" (sss), "quack" (kuh), "pig" (puh) all while pointing at the pictures. I was so proud. He also mimicked "baaa" for the noise a sheep makes.
He did well with pointing to objects that he wanted to play with. And was able to press button to hear music. He signed "more" when he wanted more animals. And was able to press the verbal recordings with pictures of either crackers or juice depending on which he wanted during his snack time. He even said "sss" for juice.
All in all it was clear that Edwin can communicate his needs through picture and sound, even if he can't verbalize all he wants now. I mentioned apraxia and the ST said it is possible, but too early to tell, especially since he is not consistently using words at this time. It's almost like he hears certain syllables and says those, but can't form the word. This could be a sign of difficulty with motor planning, which could lead to a diagnosis at some time, or it could be a delay.
On a positive note, the ST felt it was great that he makes so many noises, and copies noises reciprocally with us. She said it is promising that he knows what he wants and what he doesn't and makes it clear by pointing or pushing away.
So the plan for now is to label and create picture books and use them consistently. We have done this some, but not in a communicative way as much as we should. We are also going to continue signing, which Edwin is catching onto. We are really working on the sign for "help" this week.
I really don't know what the future holds for Edwin's speech. I long to hear him ask for me or say things like Serena does, and deep down and I think he will with time. But if he doesn't, we are going to make it as easy as possible for him to communicate his needs and desires to us. We will continue with the augmentative clinic...we return in 6 months, or earlier if he seems ready for more advanced equipment (like computer games) as opposed to the pictures and recordings.
I will try and get some video of him attempting to copy words we say. He concentrates so hard, it's really sweet. He gets super happy when we cheer for him when he makes a letter sound, or attempts a word.
So please send healing thoughts this way. I am so afraid of them getting sick after our week in the PICU at the beginning of this month. And we weren't even exposed to any sick people. I hope this isn't a foreshadow of what;s to come this winter....
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2 comments:
Healing energy, or whatever, definitely going in your direction, north, from ours.
In terms of EJ's speech--a couple of questions: I assume that at some point they checked his hearing out again? We've done a couple of hearing tests for Hallie, and found that getting her ear tubes (which now are out and will be redone along with her dental surgery) helped somewhat. Even though she passed her hearing test done in the NICU, our docs felt that this needed to be rechecked.
Second--have you guys tried teaching him more signs? I can't remember whether you've become Signing Time followers, but I cannot recommend them enough. They've definitely helped Hallie build her vocabulary.
Third--I love the idea of a PECs board. We did a variation on this last summer before Hallie started to really speak/communicate verbally and it did help.
Fourth--I agree that it may be too soon to confirm or rule out apraxia. But that said, using some of the techniques that therapists use in apraxia makes some sense and did seem to help Hallie. We got this pretty interesting book by Pam Marshalla called "Becoming Verbal with Childhood Apraxia" and that provided us with some insight into the whole phenomenon (I can try to locate it in the mess here at home and mail it to you; email me off blog if you want me to try to seek it out as we get ready for the new little one). She spends time discussing how to create a dialogue framework and I found this approach interesting and useful. We also did some 'cued' speech using hand signs to cue particular words and that worked nicely at the early stages of speech. And finally we spent time stimulating Hallie in a vestibular manner (through swings and motion) to stimulate speech and that still works really well.
Anyway, feel free to email me with questions; in about a day or two I will be free of grading and very happy to talk about this!
Oh, Stephanie, my heart warms when I hear of sweet Edwin's determination. He will go far.
I hate the winter too.
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