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!

Saturday, July 6, 2013

Dreams Really Do Come True

6 months!
I can't believe our little Ellie is already 6 months old. In all honesty, every day goes by faster than the one before it. It's crazy to me.  She's starting to give us hugs and kisses, when I first realized she was doing it intentionally it made me cry (surprise, surprise.) We have only heard her giggle twice so far, and she's sitting up pretty good (with support of course.)  She's also eating baby food like a champ.  So far her favorite is apple sauce.

Eating lunch like a big girl.
Her personality is awesome.  She is very laid back and loves to give snuggles. She smiles more and more each day. She's also been sleeping through the night since 3 weeks old. Last weekend I woke up to the sound of the lawn mower outside.  I looked over and Jesse wasn't in bed, Ellie was fast asleep next to me in her bassinet.  I got up and Luke was still asleep too.  I checked the time and it was 9:45.  What baby sleeps in until 9:45? Or even a 4 year old for that matter?  I made my way outside and Jesse and Will were out mowing.  They said they got bored waiting for us to wake up :-P She is such a fun baby and loves to sleep like her mama.

When I think back to how Jesse and I both had dreams about Ellie before she was here, I still get goose bumps.  I recently found an old email I had written to a friend.  I was discussing having two children and how Jesse and I didn't want to "risk it" by having another baby.  Here's an excerpt from that email:

"I always felt like I'd have a daughter, and my husband feels content and grateful for our two boys, he says he doesn't want to risk anything again. We actually both had dreams while I was pregnant with my youngest that we had babies with down syndrome. When they thought Luke might have it, my husbands face turned white. Later I confessed my dream to him, and he said he had the same dream! It was all too weird. When we found out Luke was OK it was such a relief.  I think that's still in the back of his mind." 

It boggles my mind that Jesse and I both had premonitions about her.  We were being prepared for her arrival without even realizing it. My mom and dad always said that our dreams represent "a fear or a desire."  When I told mom about my dream she reassured me "oh honey, it's just a fear" and she told me I needed to stop worrying about it.  Well I didn't realize it at the time, but it turned out that my dream was a desire, not a fear. I can't imagine my life without Ellie in it. I'm so grateful for her. I'm so glad our dreams came true.

I love this picture for so many reasons.  It shows off some of Ellie's "Down syndrome markers" so I thought I'd point them out: brushfield spots in her eyes, flattened nose bridge, upward slanted eyes, her single palmar crease across her hand, small low set ears... to me, it's just Ellie and I think she's beautiful. :) 

This month Ellie has her big appointment at OHSU's Down Syndrome Clinic, her 6 month well-baby visit, and an appointment with the eye doctor.  I will do a blog post to update everyone on how she's doing. I have wondered how well she can hear, see, and if her thyroid is functioning. I'm so curious to see what the panel of specialists at the DS Clinic will tell me.  It is 4 hours long, so I'm sure we will get something worthwhile from the appointment.  My fingers are crossed all goes well.

This is Ellie's old man impression.. "where's my teef, sonny?"
Here are a few more pictures of our smiley 6 month old. She had a great 4th of July with everyone. She was held the whole time and slept through the loud booms of the fireworks show. I was a slacker and didn't take any pictures of our big party this year... darn it. 

4th of July - Shooter Jennings

Ellie and her big brothers
This is one of her new smiles and it cracks me up!
Being silly for the camera! I'm addicted to my collage app on my phone (obviously)!!