Musician in the making

December 17th -

Declan loves music 🎶 ever since he was little he has shown a strong interest in songs being sung to him and an interest in playing with instruments. We have our routine songs we sing each night such as Twinkle, Twinkle Little Star and you are my sunshine; and We always have some kind of music playing in the car (sometimes I put on the CD from his music class, sometimes it’s country radio and right now we are constantly playing the holiday classics). Declan had been going to music class each Saturday and just started up again with his baby brother! At home he has all kinds of musical instruments he plays with: fisher price piano, baby drums, a tambourine and now a Tom Tom drum he just got!!! He’s a born musician!!

Just another Manic Monday...

December 16th-
Mondays are the busiest day of the week in this household. And today was no different. I’ve been trying to go to story time with Declan on Mondays when possible but unfortunately we missed a few due to our crazy Monday schedule! Declan seemed to really enjoy story time today; it’ll unfortunately be our last one at Woodbury for a long time since I will be going back to work in the New Year. Was so glad to discover that there is an evening story time at Oxford Library though so we can start going to that now until the summer! After story time, we had to rush home because Declan’s SLP from birth to three was waiting for us. She was so impressed with the improvement in Declan’s form when eating (thank you feeding therapy!!) so glad we started that up again! Speaking of feeding therapy we usually have that on Mondays too!!! After the SLP left, we hurried over to OT and PT, where Declan did awesome with sitting in the corner chair and with starting the basics of how to move his legs to get in a crawl position. Of course we have a long way to go until he is crawling but you could see he was determined to try and figure it out. During OT we started to realize today that Declan would bang his hands on the table when we paused blowing bubbles. We are taking this as his way of saying “more”. He LOVES bubbles we’ve recently discovered so it seems it’ll be a motivator for him. So three-four therapies on Mondays = definitely our busiest day of the week 😴when we got home Declan enjoyed some down time playing in the walker

CCMC Fundraiser

December 14th -
I heard some great news about CCMC today that I wanted to share as today’s post. As some of you know Declan is a frequent visitor at CCMC; so much so that one of the women at the front check-in desk knows Ryan by name when Declan has check-ups with his specialists; she is practically typing our names into the system and printing off our visitor badges before we get up to the counter!! And last winter we unfortunately had four hospital admissions there where we became a familiar face to some of the staff. When the ER nurses recognize you and say they remember Declan that’s not a good sign!! The 7th floor (that’s where the respiratory patients generally end up) became a second home from November to February; but not in a good way. I was spending the nights there and driving straight to work the next day. The Starbucks in the parking garage lobby was a frequent stop for me on those mornings! Either that or the Dunkin across the street! And as I would head out to work (with much needed caffeine in hand-those hospital machines will keep the most sound sleepers awake), Ryan would come in to spend the day with Declan until I was out from work and then we traded shifts so that he could go out to work; and we would do it all over again each stay!!! We are so grateful that now we have a lot of the “tools” at home to help Declan to manage most illnesses.
Well CCMC had a PJ day fundraiser that a lot of places including schools participated in and they raised close to $1 million total which is amazing!!! So I just wanted to share that awesome news today!!

Blendtec Medical Discount Program

December 12th -

I have posted a bit about Declan’s feeding tube: his home set-up for his feeding pump, his most recent GI appointment, and the unexpected g-tube change we had to do at home. Well, I recently came across a great resource for families of children with g-tubes!!! The company Blendtec actually offers a medical discount to families of children with feeding tubes (of any kind). The price of the blender is based on a sliding scale and could be anywhere from $0-$200, all of which is very reasonable considering these blenders cost over $400 at retail price. We have been fortunate to have just received a refurbished blender from this company at a very reasonable discount. Another unexpected Christmas gift for Declan because really what 2 year old wouldn’t just love a blender for Christmas??!!😆 We are looking forward to blending real food into purées for Declan to eat orally and then hoping eventually to create batches of blended food to feed Declan through his g-tube as well. We are looking forward to now being able to expose Declan to more flavors and to be able to feed him more of the same food items we are eating as a family each day!

Therapists

December 11th -
Even snowy days aren’t quiet in this household!! Luckily we didn’t have to go out to any appointments today, but Declan had his PT from birth to 3 and his visiting nurse at the house today (they both usually come on Mondays, but coincidentally both came on a Wednesday this week!). Some people have been asking about Declan’s therapies, so this may be a good time to share the breakdown of who his therapists are. I shared a photo on my personal Facebook page yesterday showing all of the shopping Declan did for some special people in his life (6 therapists and a visiting nurse). So first off yes, Declan has a visiting nurse; she comes out once a week, sometimes once every other week depending on if he has any other doctor appointments then she usually skips a week. There are some families who have in-home nursing help, such as a night nurse. We are very fortunate that Declan’s needs aren’t so complex that we need constant nurse care. Yes Declan’s room is full of medical equipment (I can share in another post all about that equipment)but they are pieces of equipment we’ve been trained in how to use and are comfortable using now. My one soap box in this post is that there are families who really DO need and should have around the clock nursing help or a night nurse but are unable to get it due to the absolute ridiculousness of insurance companies!!! There is also a respiratory therapist who comes to see Declan too. She just comes over once a month and she works for the medical supply company who loans us all his equipment. The RT (respiratory therapist) checks in once a month to see how everything is going for us with his equipment (bi-pap, oxygen tanks, pulse ox.) both these women are absolute saints at what they do!!! I’ve loved being home to actually see them the past few months and to chat with them. In addition to these 2 lovely ladies, Declan has 7 other teachers/therapists in his life!!! Nope that’s not a typo. And each one of them is just as important to Declan’s progress. Firstly, Declan has a TVI (teacher of the visually impaired), who comes to our house to help with arranging his work space and to teach us strategies to help him use his vision to the best of his ability. Secondly, Declan has 2 SLPs (speech and language pathologists), one through birth to 3 and one he sees privately for feeding therapy. Both ladies are also working on communication. Thirdly, Declan has two OTs, one through birth to 3 and one he sees in a private therapy setting (which by the way is hands down the best place ever!!!) One of his OTs (occupational therapists) is fairly new to our family; she is phenomenal but he did have another OT for quite some time that we still miss very much 😔Finally, Declan has two PTs (physical therapists) one through birth to 3 and one at the same private setting as OT. So after hearing about all those leading ladies in his life, you could imagine how Declan keeps his daddy so busy all week long!!! Getting to go to these appointments over the past few months (during the summer and now while on maternity leave) I really don’t know how he does it alone usually; he is super dad!!! Here is a picture of Declan’s shopping for all these amazing ladies and a picture of Declan with his super dad, which
none of these therapies would be possible without him 🥰

Santa's Helpers

December 10th -
Declan had a special delivery from Santa’s helpers!!! So grateful that there are causes such as Santa’s Little Hackers, a program made up of volunteers who adapt toys for children. Declan had his two year check up today and wasn’t feeling well afterwards but we are very excited to test out his Elmo with both his adaptive switch and the one we are borrowing from a friend; so hopefully tomorrow we can do that!

Birthday Boy

December 9th -

Saturday was Declan’s birthday and we celebrated as a family. We also went to music class and the tree lighting ceremony in town. It’s been so exciting to see all that Declan has accomplished throughout this past year. He has learned to prop sit with minimal support, he has learned to reach for toys, he now makes choices of a preferred toy when given two options, he now eats thickened purées like a champ (just still working on the lip closure!), he has become more vocal by making all kinds of sounds (and his belly laugh is the best!!), and his vision has improved tremendously where he now tracks objects and looks at people more often. Declan also had some firsts over this past year: first fundraiser for Dandy Walker Awareness, first 5K stroll, first haircut(s) and most importantly first time becoming a big brother!!! We are so excited to see more milestones over the next year