Before too much time has passed and I forget the details, I wanted to share our incredible experience at the new(ish) Down syndrome clinic at Children's Hospital & Medical Center in OMA. Bear with me, this might be a long post! Hopefully it benefits all parents out there in Nebraska with a child with Down syndrome!
Long story short, last Tuesday from about 1:30 to 5:30 PM , we met with a team of seven different specialists who know all the ins and outs about children and Down syndrome and it was sooo great!
They included a pediatrician, psychologist, social worker, physical therapist, occupational therapist, speech therapist, dietitian, and a nurse care coordinator. It was an incredibly long appointment and exhausting on Henry but so very valuable!
Our pediatrician in Lincoln recommended us getting on the waitlist there a few months ago when things started to get pretty rough at home and school with Henry’s behavior and he wasn’t sleeping well (up for the day anywhere from 2am-5am!) It just seemed like we weren’t getting anywhere with the small amount of resources we had provided for us at school so she recommended seeing what the Down syndrome clinic would have to say.
Of course with Covid it took us a while longer to get in there than we had hoped and we had to start creating a team to support us here in Lincoln. (Which has helped soooo much!) All that said, even though we didn’t have huge health concerns or anything like that it was still such a valuable appointment.
They reviewed what we were currently doing with our psychologist and occupational therapist here in Lincoln and provided some good insights on questions to ask them. They also suggested some different blood panels to run on him and a special pneumonia vaccine that might help him this winter to not get such bad crud in his chest and sinus infections like he usually does.
Each person probably spent a good 20 to 30 minutes with us and really wanted to get to know Henry. They all said to consider them part of our team and reach out at any point if we have questions. (To someone who felt soooo alone the past year with Henry’s behavior, this was such an encouraging thing to hear.) Because Henry has never had any huge medical issues we have never had a reason to have this much support, but I can’t tell you how nice it was to spend 3 1/2 hours talking to people all about my son and walk away feeling like 1) we’re doing a pretty good job with him, and 2) we have a whole team of people to back us up if/when things get crazy in our life again.
So watch the videos at the end. I’m happy to answer any questions for any parents who might be considering this. If you do have an appointment coming up, I recommend bringing lots of snacks and games/toys for your kids to play with. Also don’t be afraid to open up the door and have your kid run up and down the halls a few times between appointments. It gets to be a long time cooped up in one small room!
And if you’ve never heard of this clinic, talk to your pediatrician about getting you on the waitlist. Especially if you live far outside of Lincoln or Omaha because it is a great way to get all these appointments done at one time. They said we could meet as often as once a year or just as we feel it necessary.
So that’s my synopsis! Henry and I walked away happy and I feel 100% more confident going into this school year than last year. Thanks Down Syndrome Clinic! #Godisgood!
