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

Declan's Birth Story

December 6th -
Tomorrow is Declan’s 2nd birthday...it doesn’t seem possible that two years have already passed since our smiley, easy going, determined warrior baby came into this world. The day he was born was a flood of emotions; of course lots of excitement and anticipation but there were feelings of worry and stress too leading up to his delivery. For high risk pregnancies, the delivery experience tends to be very different than a healthy pregnancy. There are two things I remember most from that day that would be very different from when his brother Connor would be born almost two years later. First, When Declan was born there were a lot more bodies in the OR room. In addition to the usual nurse, anesthesiologist, OB doctor, and resident student there were at least four additional people. I remember Jacqui the most. She was a PA who worked in the Danbury NICU; she took the time to come see us right before I was wheeled into the OR and she checked in with us asking how we were feeling and to let us know the plan for Declan. She mentioned that most likely he would go directly to the NICU with her and two other nurses to be further evaluated and monitored. Sure enough when Declan was born, she did a quick assessment there in the room (his number on the Apgar scale was only a 2!!! Which is not a number you want to hear when it’s out of 10!!!). Which leads to the second factor that was so different with our first birth; it was absolutely silent during the delivery. You seriously could hear a pin drop; whereas with Connor and most other typical pregnancies there was chatter among the doctors and they were chatting with us the entire time. I swear when Declan was delivered however, there were people in that room probably holding their breath; I sure know that I was. And It was a very unnerving feeling knowing the doctors were just as concerned as us. Once Declan was out into the world, everyone got to caring for Declan immediately. Jacqui let me know she was indeed taking him to the NICU, but snapped this family photo of us first. I was so out of it at the time but now looking back it’s one of my absolute favorite moments with him. They brought Declan right to my face and I gave him a kiss on the cheek. His eyes fluttered open for a moment and he looked right at me as if to assure us that he was a fighter and he was going to be okay.

Weight Gain Struggles

December 4th -

Today Declan had an apt with GI. He goes to CCMC every three months to follow up with the GI doctor and the nutritionist there. FINALLY Declan is starting to gain weight again. He had been the same weight for almost a year. He’s past the 20 lb mark!!! And yes that is very small for his age but it’s progress!! Children with g tubes often have issues with gaining weight for a variety of reasons, sometimes due to issues keeping their food down, sometimes due to their underlying medical condition. Whatever the reason for Declan’s slow weight gain, he’s getting back on track. And let’s be honest these cheeks of our little chubbs as we affectionately call him have always been pinchable (throw back pic to when he had a little more chunk to him) 🥰

Snow Day

December 3rd -

Today we enjoyed the first snow day of the season! Declan tried sledding with his dad for the first time; he seemed to not be a fan of the cold but seemed fine with the sledding itself. Today we also heard from Declan’s neurologist that he is requesting another 24-hour EEG as well as a MRI. Children diagnosed with Dandy Walker malformation are at increased risk for seizures and hydrocephalus. Although Declan hasn’t exhibited seizures, the last EEG showed abnormal brain wave activity. Also, he is trying to figure out the cause of Declan’s central apnea; pretty much his pulmonologist is trying to address the obstructive apnea and she has asked his neurologist to try and figure out the source of his central apnea. Declan hasn’t had a MRI since he was a few months old. He will have to be sedated for the procedure which has it’s risks as well but hopefully everything comes back uneventful!!

Family Time

December 2nd

It’s been a low key few days for us. No therapies for five days straight!! (Due to the holidays and then the snow!) it’s probably a record stretch in quite awhile. Therapy is so good for Declan but it’s been kind of nice just to be home playing a few days as most two year olds would be doing and bonus no running around to multiple appts. per day. Declan attended his first birthday party for one of his little friends on Saturday. And while I decorated the house and set up the tree this weekend to get ready for the holiday season, Declan enjoyed some chilling time on the couch with his daddy 😆

Thanksgiving

November 29th -

Declan had a great thanksgiving. He went for a turkey trot stroll and had his version of a thanksgiving feast: mashed up potatoes: regular and sweet ones, avocado and some gravy. He loves his sweet potatoes and took a nibble of the other items. We are trying to introduce Declan to some more real foods. And are very grateful to be getting a Blendtec to blend up his food courtesy of their medical discount program for children with g-tubes.

G-tube change

November 27th -

Today was a first for us involving Declan’s g-tube. During one of Declan’s feeds Ryan saw that his button pretty much came apart (it split in two!). We debated going up to CCMC but knew it wasn’t worth the trip. We have watched the nurses change out his g-tube button at least 6 times before and we have the back-up button at home for emergency situations like this so we decided to do it ourselves this time (with no help from our friend Nurse Marie) I think I held my breath the entire two minutes it took for me to change it; but all went smooth and it wasn’t so bad after all. I was going to take a picture of “the procedure” but figured there may be some people that would get grossed out by the sight of it 😆

Go To Seat

November 26th -

Probably the best piece of equipment we have for Declan is his go to seat. Unfortunately like many great and necessary items insurance doesn’t cover it so this was our one splurge item for Declan. We found out about this seat because two of his little buddies use it and have been raving about it. And this item is so worth every penny, because it gives us so much more freedom with him now. Declan used to have to be carried around in an infant car seat for the longest time and I hated it after a certain point because he was too old and too big for it. People would comment “wow he’s a big boy” when they’d see him in the car seat probably because they thought he was half his age and just super big for his size. But now we have the go to seat to use: as an activity chair at home (with the base), at restaurants to attach it to a chair since high chairs don’t offer enough head and back support, and most recently in a grocery cart!! These seats are even approved as acceptable for flights! It was very exciting today to watch him sitting upright in the front of the grocery cart looking all around at the shoppers, the food and of course the cow!!!

The Nutcracker Show

I have been posting (almost) daily updates on the Facebook page but have completely forgotten to be posting them here as well, so tonight I will play catch up and date the posts that I am behind on:

November 24th -
Today Declan and I went to the Woodbury Library to go see the Woodbury Ballet put on a performance of The Nutcracker. I must admit I think I was just as excited to see the performance as the kids there. Well we lasted all but three minutes before having to leave. Declan started crying...loudly. He proceeded to bang his hand against the side of his head too (a new habit he has started very recently). He was overwhelmed and knew we were in a new place.

We were given some side-glances from other kids and parents so I decided to get up and leave with him. And as soon as we left, it was as if a switch was flipped; he was giggling away back in the car. I share this little story from today because it gives a little insight of children diagnosed with Dandy Walker. Children with Dandy Walker are often also diagnosed with Autism or at the very least they exhibit traits of autism. Also, some children with Dandy Walker have difficulty controlling their emotions.

I noticed that Declan's emotions would switch very easily months ago and mentioned it to his neurologist. Declan would go from crying out or sounding upset to giggling hysterically within seconds. His doctor explained that due to his brain malformation that the amygdala, the part of the brain that deals with emotions, certainly can be affected.

So, when you see a child out in public having a meltdown, maybe they're not just being a brat, they might be experiencing sensory overload so please be patient with them.