On this day I was just wallowing in it. These emotions always sneak up on me it seems. But then our neighbor girl came over. She is 11, and she had her friend with her. She was excited to show her friend all of Ellie's cool tricks. "Watch, she can whistle!" her friend was shocked. Then she asked if she could get Ellie's favorite book, and I said "of course!" Ellie then read 6 words out of her book, she can sight read the words "eyes" and "toes" and she makes correct animal sounds when she sees the word "cat", "elephant" and "tiger", and she waves for the word "wave". Our neighbor's friend said "how does she do that!? She is the smartest 2 year old ever!!" I felt my heart swell, then I felt guilty. Ellie is not reaching milestones on time, she is even behind some of her peers with Down syndrome. But you know what? She is rocking it in her own way. We are so so proud of our girl. She continues to amaze us daily.
Ellie had her 2 year doc appt, and the same week had her 2 year check-up with the Down Syndrome Clinic at OHSU and all of the awesome staff there. We are so lucky to have such a great medical team that cares about Ellie! I highly recommend the Ds Clinic, it's a long appointment but SO worth it. She met with an audiologist, speech therapist, occupational therapist, physical therapist, and Dr. Pinter. After the appointment they send a packet of information with all of their notes and suggestions. It's so nice to have it as a baseline for Ellie and I plan on taking her there every year.
We reviewed everything we have been working on since her 18 month appt, including the introduction to her thyroid meds. I have to mention that Ellie's Ped and the Ds Clinic are not advocates for treating her thyroid based on her #'s, as they feel they are within normal range. One other point that was brought up was that if I truly felt treating thyroid was important, then I should consider a synthetic thyroid medicine. There's a fine balance in following my mama-gut and also making sure I'm doing the right things for Ellie that is safe. So with that said, they both acknowledge she is doing great and that what I am doing currently won't harm her health. So I am getting more blood work next week to make sure everything looks good and will go from there.
Ellie has been on her thyroid meds for 4 months now. Jess and I have seen a HUGE difference in her. She had 3 teeth come in within the first week of being on the medication! I couldn't believe it. She also seemed stronger and more solid, and she is on her way to walking. I had said I would do an update on her symptoms, so here is a comparison of her initial symptoms (the reason I explored thyroid treatment) and I compared them to how she's doing now:
- She stopped growing
- UPDATE: At her 2 year appt she has grown to 33.5" and 24 pounds since her 18 month check-up. She's in the 50% for height and a tiny nugget at 16% for weight. The docs are happy with her growth and height to weight ratio. Still a string bean but growing steadily.
- Mottled skin
- UPDATE: She still has slight mottling (all of my kids had this) but it's much much better.
- Cold hands and feet
- UPDATE: Her little hands and feet are warm now!
- Constipation
- UPDATE: This one is a big one for us, we have dealt with constipation since Ellie was born pretty much. She's now mostly regular. It's so nice to not worry about that anymore. Oh I bet she will love to read this when she's older...
- Tongue protrusion
- UPDATE: Ellie still has tongue protrusion but she is better about keeping her tongue in. She also understands the concept of "tongue in" and "tongue out" so that's what we focus on now. Her OT actually noted the improvement from her first visit versus after the thyroid treatment.
- Swollen belly
- UPDATE: Now that her poops are in check, her Buddha belly is much better. She still has a bit of a belly on her (just like her mama) :)
- Yellowish skin
- UPDATE: She no longer has a yellow nose, but her hands and feet have a slight yellow tinge. Upon reviewing her diet we found out that most of the foods she eats are yellow/orange. Her doc says this is most likely the culprit so I'm working on that one!
- Tiny feet!
- UPDATE: I sure wish I measured her feet before and after the meds, but I do know that she fills out her cute shoes finally. I am sure they grew, I just can't tell you how many sizes!
- Delayed tooth eruption (5 teeth at 20 mos)
- UPDATE: 3 teeth came in within the first week of the medicine. She has two more molars coming in on the bottom so we are up to 8 teeth and 2 peeking through!
- Dry skin
- UPDATE: She gets chapped very easy on her cheeks and chin, but her dry patches on her elbows and knees have cleared up.
- Puffy eyes
- UPDATE: I think her eyes look less puffy, when I look back at photos and compare them to now I think this is improved.
- Low iron levels
- UPDATE: I'm still working on this one, I need to add iron to her supplement list and have been bad about adding yet another one. This one is my fault!
- Low muscle tone
- UPDATE: I definitely see a marked improvement in her tone. She feels so solid to us and strong, it's amazing! She can go from sitting to standing unassisted which is huge for her.
- Reflux (she is a spitter-upper, still!)
- UPDATE: This is no longer an issue. Her frequent spit up is gone!
- Delayed fontanel closure (still has a soft spot)
- Just checked it and it's barely there, even Jess was surprised at how small it is now!
You can see the mottling on her skin here. Doesn't she look big though? |
I also went with my mom and Jos and some other neat gals to watch Famous Iris (and Jos') BIG film debut in the movie "Wild" with Reese Witherspoon. It was SO fun!! Here is a still from her big scene, I hope it's OK I post it here! It was so funny watching Jos sink in her theater seat as we all screamed LOUD during her scene!! Sorry Jos, but it was awesome and exciting to see your faces on the big screen! Wooo hooooo!
Here are a few more of our favorite pics from the past couple of months. I am focusing on Ellie pics since it's her 2 year birthday update. I seriously took too many (no surprise there) and need to sort them out and organize them!
Looking so pretty in her Christmas dress (courtesy of Grammee!) |
Our handsome dudes. |
Loving her new cabbage patch from Grammee and Papa |
Happy 2nd bday baby girl! |
A comparison from last year's 1st bday pic! Look at how big she is! |
My ballerina in her dress from Uncle Matt and Auntie DiDi |
My little doll |
One of my all time faves of our girl |
Our neighbor Kate LOVES Ellie, and Ellie loves her too |
El Condor Pasa - Simon and Garfunkel
This is the face she and her daddy do to each other, I love it! |
Such great progress. Watch out for the iron, or the constipation will be back again...such a juggling act. You are doing an awesome job!
ReplyDeleteYou coined the blog right - our kids have their own timelines-
ReplyDeleteAs parents , we tend to ignore this fact and track milestones...
It remarkable the way you have documented the progress.. Hats off to you!