DOWN SYNDROME AWARENESS MONTH // specialists

First of all-- I hesitate sharing this post. I don't want to paint a negative picture of Down syndrome. However, there were two reasons why I have decided to go ahead and share it. 

One, it's real. Ever since the beginning of my blog my goal has been to be real, with joy. This is our real, joyful life. 

Second, I want to honor Lindie. For every milestone Eliza has reached and will reach, Lindie's body has to work even harder to reach the same milestones. A lot of it has to do with low muscle tone (hypotonia, a characteristic of people with Down syndrome). Some of it has to do with various health conditions, like her heart defect I'll mention below. Lindie kicks butt! I am so proud of her. She inspires me all the time. So, I want to honor her in sharing how resilient she is with all the stuff she goes through.

That being said, here goes:
Sometimes babies with Down syndrome are born perfectly healthy with no major health conditions (praise God)! Some babies with Down syndrome are born with health conditions that cause them to have a lot more doctors and therapists than a "typical" baby. Lindie is definitely one of those babes!

Today I want to share about all of Lindie's specialists, why we see them and how often we see them. One thing we have been told is that as Lindie gets older she will see her specialists less and less. (Can I get an amen to that)!?

Lindie has a
  • Pediatrician: When Lindie first came home from the NICU, we used to see our pediatrician more often than a "typical" babe. Now we just see her for our regular well-checks and the occasional office, usually relating to her g-tube. (Praise God Lindie hasn't been sick yet, so we haven't had to see her for anything sickness related)! I will also add that when we found out Lindie had Down syndrome we switched doctors. We liked our previous doctor, but we switched to someone who was closer to the house and who seemed to have more experience working with kiddos with Ds.
  • Cardiologist: Lindie was born with two heart defects. A small Patent ductus arteriosis (PDA) which has since resolved on it's own and a large Atrial septal defect (ASD) which has gone from large (8.5 mm) to medium (5 mm). We see her every 6 months to monitor the ASD.
  • Ear, Nose and Throat Specialist: Oftentimes babies with Down syndrome have smaller ear and nose canals. Lindie has had fluid build-up in her ears for a while now and failed her 6 month hearing test.  (She passed her newborn screening when leaving the NICU and she responds to sound, so we know she can hear). We may be getting tubes in November, so we hang out with our ENT every so often. We go back in November to follow-up with that.
  • Developmental Specialist: We don't see our Developmental Specialist often but she looks to see what Lindie is doing and not doing and rates her compared to "typical" babies at her age. We went in June and we go back in March.
  • GI Surgeon: Her surgeon is the one who did both of her surgeries in the NICU. Like our pediatrician, we saw him pretty often early on because of her G-tube. There were so many complications we had with it, like granular tissue and infected stitches, that they saw us a lot in the beginning. Now we just go back every 6 months to check on her G-tube. We go back at the end of this month for a follow-up.
  • Ophthalmologist: We see an eye doctor because Lindie has Nystagmus. Nothing too concerning, but we will go back every 6 months for check-ups.
  • Physical Therapist: We have our PT through the state with a program called SoonerStart. She comes to our house every other week and works with Lindie on her physical milestones. Right now we're working on things like tummy time, sitting supported and weight-bearing on her feet.
  • Speech Pathologist (2): Our SP is also through SoonerStart. She also comes to our house every other week and works on things related to feeding and communication. Right now she's targeting communication. We also are starting (TODAY) oral therapy (feeding therapy) at the Children's hospital. She will focus on Lindie's eating issues. We will meet weekly with her through March and re-evaluate from there.
  • Dietitian: Lindie doesn't eat like a typical baby. If it were up to her she would only eat about 6 ounces of breastmilk a day, when her body needs around 31 ounces a day. We meet with a dietitian every few months to track Lindie's progress and see how she's doing calorie-wise, that way I know if I am giving her the correct amount of milk in a day and so forth. So far, so good.
  • Orthotics Specialist (I'm not even really sure if that's what you call it but that's what I call her): This is our helmet lady. We see her every two weeks. She measures Lindie's head and makes adjustments on the helmet and tells us how much longer we may have the blessed thing. She's great!
  • Vision Specialist: Just this week we met with a vision specialist with SoonerStart. She just double checked Lindie's eyes and already thinks her Nystagmus is going away. We'll see her again in 6 months.
I think that's it!

Right now we are guaranteed at least 2 appointments a week between SoonerStart therapy and Oral Therapy. Some weeks we have had up to 6 appointments. (Those are the weeks I am needing a mommy break- AKA: beer me!- by Wednesday night).

I can't wait until this list is waaaaaaaay shorter. Until then, pray for us! (Seriously)!

EDITED TO ADD: Praise Jesus for MEDICAID! Right now Medicaid is saving us HUNDREDS (if not more) each month in co-pays. We didn't have Medicaid for the girls until Lindie, but now we are so thankful for it and would be in so much debt without it!

3 comments:

ecrain said...

Rock on, mama. You're doing so many amazing things for little Lindie. Thank you for being so inspiring!

Christina Kroeger said...

I've been following your posts this month and am admiring you and Chris from afar. Thanks for being vulnerable about this whole process. Lindie is an absolute doll. I can't explain why but I tear up (in joy!) every time I see her photo on my instagram feed. Especially the ones with her and Eliza. It is too much precious for my tear ducts.

Adelaide Dupont said...

Are you making sure Lindie is going to an Adult Down Syndrome clinic when that time comes?

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