Luke's Story - Six Month Update
Can you all believe that this month Luke turned SIX MONTHS old?! It is so crazy to me that our little man is half way to a year old. The past six months have been the craziest, longest, shortest, most emotional and topsy-turvy months I have ever experienced.
Our family has been through so many emotional highs and lows and we’ve learned so much about ourselves, and our support system (and genetics!) in the process. Getting to the six-month mark felt like such a huge milestone that I wanted to take a moment to make a special post dedicated to an update on all things Luke, who is growing big and currently weighs almost 18 pounds! He is strong and healthy little man and we are so thankful that, to this point, there have been no medical concerns!
Around six months of age, it is important for babies with Down syndrome to have a few visits with certain specialists to make sure everything is continuing to develop as it should, and to screen for a few things that are a little more prevalent in individuals with Ds. At birth, Luke had a very small extra hole in his heart (which was expected to close on its own) and a slight heart murmur; so in the next month we will be following up with cardiology and they will do an echocardiogram to check Luke’s heart and make sure the extra hole did in fact close.
After cardiology, we’ll be seeing audiology and ophthalmology. Hearing and vision problems are common in individuals with Ds, and can significantly impact development if they are not caught and addressed early. It is recommended that hearing is tested every 6 months until the age of three, and vision should be tested at or before the age of 1. Little man will also be getting his first set up of labs drawn, which I am not looking forward to but know is necessary. Again, thankfully we have had no issues thus far and everything looked great when he was born, but as with any other individual, medical concerns can come on fast and pop up out of nowhere. So to be thorough, Luke’s labs will pretty extensive in an effort to make sure we’re monitoring everything as best as possible.
We recently had our first appointment with genetics and it went great! We liked our geneticist and are so happy to have someone on Luke’s care team who truly cares about him and his progress. It was also nice to FINALLY have the results of Luke’s genetic karyotype explained, and we officially learned that the type of Down syndrome Luke has is Trisomy21 nondisjunction. If you remember from the previous Ds education mini sessions, nondisjunction is the most common type of Down syndrome and is a result of improper cell division which leads to all cells in the body having an extra copy of chromosome 21. Honestly, it doesn’t matter either way, but it is nice to finally have an actual answer about what “type” of Down syndrome he has.
And last but not least – therapy! We have been blessed to have some absolutely wonderful parents come along side us in our journey with Luke, and so many of them said that in terms of therapy and Early Intervention services, the earlier the better! We followed that advice and when Luke was 2 months old, got him enrolled with the state’s Early Steps program and created an individual family service plan (IFSP) that outlines the therapies and services Luke needs as a way of holding providers accountable and making sure his needs are met. Once a month we meet with his development specialist and are also adding in physical therapy.
Overall, Luke is super healthy and we are so thankful! He’s a sweet, snuggly baby and it’s been so fun getting to see his personality come out more every day. We’re so excited to see what the next six months have in store and can’t wait to watch Luke continue to grow and see all the things he’s going to do!