Tuesday, May 25, 2010

Speech & More Speech

Today has been all about speech.  Could have been dealing with three different speech pathologists today if we had the guts to...only could handle two though.  Read on for the details.

We started off the morning with an appointment with Sara Rosenfeld-Johnson.  She is a very well respected Speech Pathologist who specializes in Oral Placement Therapies.  She has done considerable work with those in the Down syndrome community and we are very lucky to have had the opportunity to meet with her again.  The first time we met with her was back in December and so this was our second meeting.  Sweet Pea has changed a lot since December so it was definitely time for a re-evaluation.  Unfortunately, Sweet Pea wasn't very cooperative as she isn't feeling much like herself today.  Hasn't eaten hardly a thing and throwing up/spitting up a lot.  Don't know why, but hopefully it will pass quickly.  Sara was able to see a little of what Sweet Pea does, primarily that she babbles with her tongue out and that her tongue is still kind of out when drinking from a straw.  She is putting us on straw #1 on her straw hierarchy with 3/4" of straw to begin with.  In two weeks we would cut that down to 1/2" and then eventually down to 1/4".  Each time we shorten the straw it makes her work a little harder.  With the 3/4" length in her mouth Sweet Pea can still do a suckle like she would with a bottle so we really haven't helped as much as we thought we had by moving her to the straws.  We also need to start side feeding her with the spoon so that she closes her lips better.

Another big change is that we need to regress to only purees because she doesn't have a chewing pattern.  We had thought we were making such progress on this front, but apparently we were just helping her learn to swallow her food without chewing it.  Whoops!  Better that we are told this now than later!  So it is back to purees for Sweet Pea, but we will continue to expand the variety by doing homemade meals and using the blender and food processor to puree it for her.

I believe the other change is that she is giving us a new treatment plan.  This time we will start with our therapist doing the exercises at daycare or the OT location until Sweet Pea is comfortable with the therapist doing them.  Then us parents and my mom will be asked to try doing them during the therapy with the therapist.  Finally when she is good with us doing them, then we will start doing it at home without the therapist there.  Who knows how long this process will take, but Sara warned us that if we rush it we could turn Sweet Pea off of all of this for years to come.  We all agree that patience is best!

Moving on to the 2nd portion of speech...we had an evaluation for speech through our insurance this afternoon.  Since we have to go through insurance for our services before Regional Center will pay for them we realized that we didn't have to wait until the ridiculous 18 month magic line in the sand that the Regional Centers have for even thinking about offering speech to our kids.  We can get it from insurance until we run out of sessions for the year and then either insurance will have to approve more or we will need to lobby Regional Center to start paying for it.  Either way, we can start getting speech much earlier than 18 months and that can do Sweet Pea a world of good!  Now trying to find a speech pathologist that takes insurance was a nightmare, but we finally found one about 20 minutes away (without traffic).  The evaluation was very thorough and Ms. Speech shared a lot of good info with us.  Again Sweet Pea wasn't cooperating, but she did show some of her skills.

Basically, Ms. Speech is a bit nervous that Sweet Pea is aspirating when she is drinking and that has been a concern of ours for a long time now.  One of the reasons that she is worried about that is because Sweet Pea sometimes coughs during feedings (mainly with liquid) and also after feeding she sounds a little gurgley.  The way she explained it is that food/liquid can sometimes get stuck above the airway instead of going down into the esophagus.  That food doesn't always make its way down into the lungs, but it could.  The coughing would be the bodies attempt to expel it before it gets down to the lungs.  She has a fairly week cough so we don't know if the cough is successful or not.

If we get approved for services (most likely we will), the gal will work with us to try to figure out if she really is aspirating or not.  Aspirating (basically food/liquid goes down into your lungs) is a VERY bad thing and we really hope that she isn't actually doing it, but we just don't know yet.  Ms. Speech is recommending twice a week therapy for the time being and hopefully the paperwork will all be approved in 2-4 weeks so we would start then.  Her suggestion for the time being were to keep Sweet Pea upright for 30-45 minutes after all feedings.  That doesn't work too well at bedtime or at twilight but we are going to do our best.  Her bed being inclined is somewhat helpful, but she said unless it is 45 degrees or higher it really isn't doing enough.  We can't get her to 45 degrees so we will just have to hold her or something.

The final piece of news from Ms. Speech was that Sweet Pea scored at the 0-7 month old level on the test!  Lovely!!!!  She thinks that Sweet Pea is probably more like a 6-9 month old, but based on what she actually witnessed Sweet Pea do today, 0-7 is where she had to score her.  Those tests are so heartbreaking!  I'm trying to not get hung up on it because I know that Sweet Pea is making steady progress, but I really hope that by adding in speech services we can see her start to at least keep pace and not fall farther behind.  Speech is our number one concern and it is frustrating that it is the one service we haven't had!  Oh well...we are working to correct that now.

On a twisted note...the speech person from our Regional Center who we spoke to for the first time last month actually called us while we were at the above session!  She left a message for us on our home line and Daddy and I haven't had the courage to even listen to it yet.  It probably doesn't even say anything, but we just couldn't handle anything more today.  This gal told us a month ago that because Sweet Pea was doing a couple of things that kids close to her age would do that she wouldn't qualify for services.  We were going to have to really fight her for a few months to get her to even do an evaluation!  After today's evaluation it makes me so mad!  The Regional Center system really is broken out here!  They have these unsubstantiated guidelines as for when speech services should even possibly be considered and to get an evaluation you have to convince their internal speech person that it is needed.  This person who works for the Regional Center and therefore is going to follow their guidelines!  It's insane...but I will get off my soapbox now because we are lucky enough to have good insurance and hope to be rescued by them. (knock on wood)

To sum up what we learned today...we have a lot of work ahead of us!  We thought we were already doing a lot with/for Sweet Pea, but apparently we need to be doing a lot more.  It's so hard!  We try to be good parents, but her needs are so much higher than we ever anticipated and we feel like we are falling way behind.  We will have to get our daycare to start doing these new things too, but we will make it work.  Some how, some way, we will make it work.

To end on a sweet note...her are some pictures from our trip to the park this weekend.

Hang on tight!

Best Daddy Ever!

Such excitement!

I love the flying hair!

Daddy and his little angel

Finally warming up to the slide!

She really is smiling!


  1. The most important thing is that she's happy, right? She'll get the 'other stuff'. I know it's hard though. Max is waaaay behind in speech too. And he won't even look at a straw! I always wonder if he aspirates too. No speech therapy approved for us in Utah this early either. Keep us updated.

  2. What a cutie-pie you have! I found you through a friend's blog (Ella's mom). My daughter with DS (AKA The Skink) is 3 now. She was a micro-preemie and had feeding issues due to an underdeveloped esophagus. Because she was so young, we had to go the feeding tube rout for her first two years, but since Sweet Pea is older and has survived quite well thus far, even if she aspirates some of the time, they may just have you thicken her liquids for a while. The therapy for aspirating isn't too invasive at this age.

    That said, DON'T get hung up on the results of the evaluations and the comparisons to "typical" children. Listen to what the therapists say, and then put it out of your mind and go on your way. Every child on the planet develops at their own rate. You are doing a great job of raising your daughter from what I can see, and you don't need to worry or fret over this useless information. We have a saying in our house... The Skink has severe hypotonia and doesn't walk well despite her age. To all these little things, we say, "That's OK... I'm sure she'll be walking just fine by the time she's in college!" Accept and move on, right? Sweet Pea is perfect just the way she is, and as long as you're giving her love and plenty of attention, she'll do fine!! :o)

  3. great expressions on the swing

  4. WOW that is alot of info in one day. Glad you learned some great stuff that is so relevant to her right now and that you have a plan laid out to help her!
    Good luck.

  5. 18 months seems to be the magic number for speech services BUT BUT BUT...we did qualify for feeding therapy which was provided through our insurance. We did have to get the doctor to agree that she wasn't feeding the way she should be compared to her peers. SOOO that might be an open door through Regional Center for you. I really hate that 18 month rule, it just doesn't make sense. But I'd totally recommend going for a feeding therapy approach as that needs to be done through a SLP or SLP-A

  6. Sweet Pea is unbelievably adorable! I love the pics! My only child is 17 months old & has DS too. Speech & feeding have been a struggle at times for us as well. Our son has reflux which requires us to keep him upright for at least 30 min after eating/drinking. Like you said, holding him up after the the nighttime bottle is the most difficult time for us. I can completely sympathize with you! I have to say that I'm kind of surprised that your pediatrician hasn't ordered a barium swallow for Sweet Pea. If they really believe that she could be aspirating, then that is something that you guys need to know ASAP. It could be that she is suffering from reflux & that is why she is coughing & sounding gurgly. My son was the same way until he was diagnosed & placed on medication for it. Either way, I hope that you all have an answer soon. Praying that Sweet Pea is feeling better soon! :)