Saturday, July 20, 2013

Ellie's Big 6 Month Ds Clinic Appointment Update

Ellie had her much anticipated 6 month appointment at the Down Syndrome Clinic at OHSU - Doernbecher. It went AMAZINGLY WELL.  I am so grateful to have the Ds Clinic so close to our home. The appointment was 4 hours long and worth every minute. I was still jet lagged from coming back from Ireland the day before so my note-taking was not very good (OK I didn't take any notes!) They reassured me that they would mail me all of the recommendations from each specialist from the day (sweet!) My mom came with me and had great questions to ask, and was cracking everyone up along the way.

Show me what you got, docs! Let's do this thang!
The first person we met with was the Audiologist.  I had wondered if Ellie's hearing was OK.  She passed her newborn screening but I know that fluid can easily build up in her ears so I was anxious to know how she was doing.  She passed the hearing tests with flying colors, and it's recommended to have her hearing checked every 6 months.  I will be able to do this through Willamette ESD. The Audiologist was so nice and personable.  She even knew one of the Audiologists from Willamette ESD so I was given inside scoop on who to ask for when Ellie turns 1. She also mentioned that if Ellie gets sick with a cold or ear infection that the fluid can quickly build up, so to keep an eye on it and retest if necessary.

The next person we met with was the Speech-Language Pathologist.  She had some great pointers on engaging Ellie with mimicking sounds and facial expressions, and even having her copy us with sticking our tongues out. Jesse and Ellie do this ALL THE TIME and we always tell him to quit teaching her that- knowing that tongue thrust is already an issue we will face in the coming years. Well we were schooled on that, because the gal giving us all the tips reassured us that all babies stick their tongues out!!  She explained that when Ellie is bigger, we will work with her on keeping her mouth closed. If she keeps her mouth closed, her tongue can't stick out. Point was well taken (oops) and I told Jess he was right all along! 

Daddy, they told mom that our tongue game is totally fine, mommy is so neurotic!
The next person we met with was Dr. Pinter.  Talk about an awesome doctor! I was so encouraged and uplifted after meeting with him. He has such a positive view of Down syndrome and you can tell he genuinely loves his patients. He is a Pediatric Neurologist and is very brilliant. I was able to review Ellie's brain MRI with him. I wish I could have gotten a picture, it was wild seeing into my daughter's "normal" brain! I even saw her baby teeth and they looked cute already :)  Dr. Pinter was thorough and answered all of my questions before I even pulled out my giant list. I've been working on that list for the past 6 months! He was down to earth and I felt comfortable to ask him anything. I am so lucky to have him on Ellie's team. He told me more than once how beautiful Ellie was. He gave me links to some local kids/adults with Down syndrome's YouTube videos. One that really stuck out to me was of a little local girl with Ds dancing at her school talent show. Her name is Iris, she is the CUTEST LITTLE GIRL EVER! After some digging (OK, Facebook stalking) I found her mama. She gave me permission to post the video of her.  She is a 2nd grader and has some awesome moves.  Here's the link:

Iris - "Thrift Shop"

And in the usual Down syndrome "club" fashion, as I was writing back and forth to her mom I realized that the video Ellie was in called "I CAN" also had Iris in it! Iris was one of the kids that we noticed because she was so stinking adorable and her brother had a mo-hawk just like Will. We all thought those two reminded us of Will and Ellie someday. What a small world! I really am looking forward to meeting Iris and her mom soon. 

Dr. Pinter also provided a very easy to read guide for new and expectant parents from the The National Down Syndrome Society called  "A Promising Future Together".  I left my appointment with him with a list of what we talked about and list of Down Syndrome Health Care Guidelines Record Sheet. It lists everything to watch for over the next 12 years and is easy to follow. I felt much less overwhelmed by the medical "stuff" after meeting with him.

Lastly we met with Occupational Therapy and Physical Therapy.  There were four ladies and they sat around Ellie on a play mat. They gave me great ideas on keeping her arms forward (she likes to pull them back) and were encouraging about how she was doing so far. She was loving the attention, it was so cute! Our next milestone is getting her to sit unsupported and to start working on crawling.  She is also starting to lean to the left so we are also working on that so she doesn't develop torticollis. 

Oh, a quick update on Ellie's stats (this is her virtual baby book so I need to make sure to write this down!)  
Height: 27" (80th percentile)
Weight: 14lbs 9oz (70th percentile)
Dr. Pinter said she is "long and lean" and is happy with her growth.  The percentiles are based on the Down syndrome growth chart. 

Other miscellaneous things I learned: the jumperoo is fine in moderation (I had read it was bad for baby's hips), the bumbo baby chair should also be used in moderation as it can attribute to poor posture due to the shape of the seat, thyroid issues in babies (with or without Ds) can cause cognitive delays so it's important to have the thyroid checked, and brushfield spots do NOT cause issues with sight (heard this myth too!)

I love this thing!
Overall, I would say that the Ds Clinic is well worth it. It reconfirmed everything I have read and researched so far. I also was able to ask about the spendy supplements that I keep hearing about. It was bugging me that we weren't doing it because I've read a few testimonials on how it's a "miracle".  After speaking with Dr. Pinter I feel confident that it's not worth the $300 a month for us to do them (can't afford that anyhow.) I am going to keep taking my vitamins and supplements that she gets through my milk, as well as give her vitamin D drops. I'm finding with Ellie's care, listening to the doctors but also listening to my mama gut instinct is VERY important. Everyone at the Ds Clinic loved Ellie and she was so cute showing off her skills. I look forward to our next appointment when she's 1! 

I always end each post with a song, and this time I couldn't come up with one. I asked Jess and the boys what song they thought would work. Luke wanted me to post Beyonce's "Single Ladies" but it didn't quite fit (lol) and Jesse started singing "Haaaallelujah.. Haaaaalelluuujah... Hallelujah, Hallelujah, Halleeelllluuujaaaahh!" because we were so relieved to hear how well Ellie was doing. It made me think of this song, which I love, and it doesn't really go with this post but I'm adding it anyways.

Hallelujah - Rufus Wainwright

It was a fun day mom, I got lots of attention!


  1. Not sure if it helps or not, but our speech therapist recommended that, in addition to doing the mimicking/tongue-sticking out, to do this. When Little Bird's tongue is kinda lazily hanging out of his mouth, we touch it with our finger, and he instinctively drew it back in his mouth.

    This drill really helped him learn the difference between using his tongue (mimicking) and not using it, if that makes sense.

    Little Bird is 8 months, and we started this drill at 6 months. Check with your speech therapist obviously, but wanted to throw it out there.

    Glad the little one is doing alright!!


    1. LBD I meant to reply to this and say THANK YOU for the tips! I have been trying this since you wrote your comment and it seems to be helping her. She pulls that thing right back in when we poke it :-P

  2. You know I love me some Ellie pics. Glad it all went well! All babies *do* stick their tongues out, so true! I was just having this conversation with a friend whose baby does it, no Ds, we were pondering the fact that no one thinks anything of her baby doing it.

    1. Jisun, I know.. I have to remind myself of this all the time. Thank you for the sweet comment :)

  3. Owen is 4 and he stuck his tongue out too for a long time. But he learned around age 2 to tuck it back into his mouth. We don't have a problem with it at all (unless he's really concentrating and it will stick out a little bit, but so does mine when I'm deep in thought!). Glad to hear you had a great appointment at the Ds clinic--I have always enjoyed going to ours because the care there is specialized and they really do listen.

    She is SO cute!

    1. Stephanie- thank you! I am so grateful for the Ds clinic too. They really know their stuff and I feel like I can ask questions about one of the many things I've read online and they will actually know what the heck I'm talking about :)