Adapted Toys

Since we are getting into the holiday season, I wanted to share a resource for families called Santa's Little Hackers. Now unfortunately applications for this holiday season have closed already, but for those interested next year (for either their family or to tell another family about it). Santa's Little Hackers is made up of a group of volunteers, aka Santa's elves, who adapt commercial toys for children with special needs. Some children are unable to operate toys in the manner they are manufactured and sold in toy stores due to visual impairments or physical limitations; therefore he/she benefits from switches to help them operate the toy. Families can fill out an application in November requesting one of these adapted toys to be made for their child. All you need to have is an adaptive switch of some kind and there are all kinds out there. Here is a picture of Declan holding his adaptive switch which was a birthday gift last year from two of his favorite therapists!!!! Declan would just have to press one of the buttons to make the adapted toy move. We requested either a dancing Mickey Mouse or Elmo because he loves to wiggle himself around, so we would love to see him wiggle and dance along with the toy. If we are lucky to receive one we will share a video for sure!!!

Art Class

Now that I'm on maternity leave it's been so nice to enjoy some special activities with Declan. We've been going to the Golden Button in Woodbury once a week for mommy and me art classes. Declan has to sit on my lap for the class, needs some modifications, and he of course tries to put everything in his mouth from the paintbrush to the feathers that we used today, but it's been so nice to be able to spend this time with him making memories. Despite not having good gross motor skills, Declan has surprisingly good fine motor skills and is able to hold the paintbrush really well! I of course help him move the paintbrush around, but it's so important to give him these "normal" experiences as much as possible. Today, we made a turkey with some feathers, paints and oil pastels!

Fed is Best

Yesterday I came across a video ad on FB put out by CCMC about g-tubes so I figured this is a good time to talk about Declan's g-tube. There are a ton of big words used by doctors to describe why Declan needs a feeding tube, but basically due to him having such low tone, Declan lacks the physical and oral motor strength to safely consume anything thicker than purees (think stage 2 baby foods) or melt-able puffs at this point in his life. He also struggled with consuming milk by bottle ever since he was in the NICU; he tired out very easily. When Declan was born, he had an NG tube (those ones go in the nose, down the throat and into the stomach). Danbury Hospital talked about possibly sending him home with this, but then the concern grew about Declan's heart so he was transferred to CCMC and a month later when it was time to leave the NICU they wouldn't discharge him with a NG tube. He had to have surgery and get a G-tube placed which I was relieved honestly because Ryan and I both had lots of anxiety practicing inserting the NG tube properly!!! So Declan had the surgery and four days later, we were finally homebound with g-tube intact!!!! Fast forward to now, and Declan is making progress with feeding orally. We are slowly thickening his foods and of course hope that one day in the future he would no longer need to have a G-Tube. But for now, if anyone ever has questions don't be afraid to ask and like the adorable kids said in the CCMC video "Don't freak out!!!" But please no more asking how soon until it can be taken out and please no more saying "well if you just feed him more by mouth he won't need it". Unfortunately it's not that simple; trust me we would of course prefer he didn't have the g-tube and need a feeding pump. But for now it's what he needs to be nourished and we are okay with that!! Here is a picture of our little set up at home for Declan's feeding pump; we even had the pump personalized recently!! I even decorate the pole for the different holidays. Just remember fed is best, no matter which way a child has to be fed, as long as they are growing and getting the nutrients they need that's all that matters.

Sleep Study

Today Declan had an appt. with pulmonology. It was a lonnnnng afternoon; had to drive solo to CCMC and we were in the office for almost two hours! His pulmonologist reviewed the sleep study results from last week which showed the same info. as his first sleep study a few months ago: Declan has both obstructive and central sleep apnea. This confirmed that he needs his oxygen tank at night still because of low oxygen saturation when sleeping. So we haven't fully kicked the oxygen tanks at night yet (or when sick) but hope to eventually! Also, Declan has been fitted for a Bipap to wear when sleeping so he will be rocking this contraption going forward...

The 20 week ultrasound

-The 20 week ultrasound- 

All women have an ultrasound around 20 weeks called the anatomy scan. At the time I thought nothing of what should’ve been a routine scan. There on the screen was our beautiful baby!!! Most couples find out the gender at this appointment too. And sure enough we found out mama knows best and I was indeed right-our first baby was a boy! We were so excited! The ultrasound tech was pretty serious and quiet and kept saying “I can’t share much you have to wait to meet with your doctor.” But she did comment on two things- 1) Declan was a mover! He was moving all around making it hard for her to get a great read. As she put it he was being a little stinker!! 2) when she finally got a decent read, there were some concerns with the brain and heart that my doctor would go over. We were told to go back next door where my OB explained that the size of parts of Declan’s brain were not developing at the rate they should and that they were having trouble getting a good read on the chambers in the heart. The next week, we were referred to the maternal fetal medicine dept. at Danbury hospital aka the high risk doctors. They shared with us that the 4th ventricle in Declan’s brain was enlarged, the cerebellum was underdeveloped and there was a concern with the heart but they couldn’t tell much on this until birth. I ended up having an ultrasound every two weeks until Declan was born to monitor his brain and heart. We ended up also having two fetal echos at CCMC and a fetal MRI at a place in NY before Declan was born too. All three specialist doctors kept saying “this will affect his quality of life but we can’t say how it’ll affect him”. To this day those comments make me sooo mad for two reasons: 1) how could they be so vague on how these findings would affect our son yet have the nerve to imply that his quality of life would be compromised. 2) Anyone who knows Declan knows his “quality of life” is not affected. He’s an awesome kid with so much determination. No “abnormalities” are going to slow him down 

Who is Declan?

Here’s a little background on Declan and our family. Declan was born 12/07/17 at 38 weeks and 2 days. Although not officially diagnosed right away, Declan has been identified as having Dandy Walker variant. At the 20 week ultrasound (more on that later) we were informed of brain abnormalities and heart defects on the scan. We didn’t know at the time much about how these anomalies would affect Declan but we knew he was our precious boy and that ultrasound was not going to change how we felt about this pregnancy...he was ours and he was special. Fast forward about two years later and we are now a family of four; Declan is now a big brother and continues to stun us every day with his progress.

Starting a Blog

I have always wanted to write a blog of some kind and hadn’t yet found the inspiration to do so. And then I realized my son, Declan, is my inspiration. So I am hoping to use this page as a source of advocacy, a place to inform others with special needs resources, share stories of my son’s journey, and most importantly to simply celebrate his milestones as they come along