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Sunday, February 23, 2020

Night to Shine

Brendan has recently started going to dances again and attended his very first Night to Shine. He will have many Proms between this year and next year so we went ahead and purchased him his very own Tuxedo. We have different shirts and bow ties to switch it up for each dance. We lucked out and grabbed them all on clearance. After that entire process we are very happy that we decided to purchase instead of rent one each time. It is not easy to get it all on him and measure for alternations. In the end we save money as well since they are a lot more to rent than I had anticipated.

Brendan went through a period of not wanting to attend any dances. I found this odd since he used to love going. I didn't force him to go and was literally just accepting the fact that my son would not be attending Prom. However, this year he surprised me and asked to attend Homecoming. I have been wanting him to attend Night to Shine for years but since he wasn't into dances I never asked if he wanted to go. I am so glad he wanted to, he had an amazing time. His high school is now adding a Unified Prom this year so he will attend 3 just this year! Night to Shine was started by Tim Tebow in 2014 and provides an incredible experience for people with special needs around the country.

We lucked out and his school bus driver is simply amazing. She loves Brendan and has been a part of our lives for years and volunteered to be his buddy at the dance. We decided to surprise him and was beyond happy when he saw her.

His face seeing her:

We got to drop him off and go on a date! I knew he was in good hands so I had zero anxiety leaving him. He had an amazing time and will continue to attend. I literally cried when we came back to pick him up. Watching him and everyone so happy dancing the night away without a care in the world, without any judging them, without anyone looking at them weird or off in their own clicks. The DJ was ending the night and everyone started shouting "one more song, one more song" and my heart melted. I am so glad my son chose to experience an amazing event. I hope he continues to do so because I want him to enjoy his life no matter how hard it can be.

Derek got him out of his chair to dance with his buddy:

My teary eyes because apparently I will be emotional for life:

Friday, February 21, 2020

Cardiology, Orthotics and SDR Anniversary OH MY!

We have had a busy month as always. Yesterday marked 5 years since SDR! This week Brendan had his cardiology appointment to check on his enlarged aorta and then he was casted for new leg braces as well as a back brace for his scoliosis. We also finally picked up his new glasses because I broke his one week old pair the very first day we had his power wheel chair in the house. OOPS

I can't even believe it has been 5 years. So many memories come flooding into my brain. It was far from easy and I had my 6 week old baby to care for but we did it! When I think about everything that we have done since it seems a life time away but in other aspects it feels like yesterday. Time is weird like that.

Recovering from SDR 5 years ago today:

Brendan had to have his heart checked again. I was worried this time but not entirely sure why. Maybe because we just got horrendous news regarding his scoliosis. Maybe it is how I prepare myself in case the results are not what I want to hear. Apparently it is my coping mechanism so I can get through that very moment the doctor is spewing out information that I don't want to hear regarding my child. So I was anxious for a few days prior, however, there was no need because we got amazing results. His heart is functioning beautifully. We no longer need to even think about his device that was placed in his heart at age 5 to close 3 (of course not 1 but 3) holes in his heart. It is healed and not leaking and working perfectly. The last few years we have been watching an enlarged Aorta. The doctor had kept this lovely information to himself for years which thinking back I am completely okay with! Although when he told me I was knocked down like a ton of bricks. I didn't see it coming. We already had dealt with some leaking issues around his device and finally that appointment had been good news. No leaks were seen and it was healing completely. I wasn't prepared for a different type of heart defect especially one involving his aorta. Seriously kid?! This one hit me hard because my father had his aortic valve replaced and I figured it had to be genetic or something and visions of open heart surgery danced in my head. Thankfully as the years have gone on his enlarged aorta doesn't seem to be a problem. His just happens to not fit into the 'normal' range which doesn't surprise me because we are talking about Brendan here. Nothing has been normal since the day he was born. Once he is an adult the size of his aortic root won't even be considered enlarged which is less than a year away so we can all breathe again. He doesn't even have to go back for 3 years! This is the longest we have been able to avoid the cardiologist. We are both very happy. He really doesn't enjoy this appointment but rocked it like never before.

Very happy to be leaving that appointment:

At least he got to go see one of his favorite people after his most hated appointment, Katie. Katie is his orthotist. She makes his leg braces and whatever else his body needs. She has been working with him for 5 years now after his previous orthotist suddenly died after having an aneurysm. Brendan got to talk her ear off and get casted and measured for his new back brace. He enjoyed every second. She even gave him a tour of their brace shop and he gave the secretary's his phone number just in case they were hiring for the Summer! They have known him since he was a few years old and love him. Brendan has that way with people.

Happy at this appointment:

So we have had a busy few months but we got a lot checked off of our list. We received some bad news and some good news and that is how life works.

I think we got all of his appointments checked off for a while. Next week I get to endure a multiple hour allergy appointment with my 5 year old so it actually never ends for me!

Thursday, February 13, 2020

Sleep.....or lack there of

I was beginning to accept the fact that we just would never get a full night sleep ever ever again. Occasionally we would get one here or there but never multiple nights in a row. Why you ask? This is due to many years of having babies and our beautiful 5th child that just doesn't sleep, at least not through the night, as well as our aging dog.

This adorable child of ours has not slept well since she was 4 months old. She is now 5! We have tried everything. All of our other kids have always slept very well. They hit the age where you have to let them cry it out and which is horrendous for a week but then they sleep all night long, seemingly forever. Not this child! We used to have to make her cry it out as a baby monthly, no lie. I never understood it and 4 years later I still do not understand. We tried a higher quality mattress, more clothes, less clothes, more blankets, less blankets, a weighted blanket, night lights, fans, music, a sleep mask. We even bought the Alexa night light that has certain colored lights to let said child know when it is okay to get out of bed......nothing and I mean nothing works!

sleep mask for the win:

We have tried a sticker chart, a reward after sleeping 5 nights straight which she literally has still not reached! We have tried yelling at her, we tried being super sweet and nice. For a while we would robotically just get up and 'fix her blanket's or just tuck her back in and sleepily crawl back into bed. Some nights she wakes up multiple times and we literally want to scream! We always take turns. Occasionally the other person doesn't even hear her or wake up due to severe sleep deprivation but usually we are both woken up disturbing our sleep cycle. Sometimes she cries from her bed or just loudly huffs and puffs, other times I feel like I am in a horror movie as I suddenly wake up to a child tapping my face or whispering 'moooooom'. I feel like I am sleeping on edge lately and hear her footsteps creeping into our room even when there are no footsteps in order to avoid waking up to a person staring at my face! We can't even grasp this concept that our child doesn't sleep through the night. She is our 5th child. We know what we are doing. The other children are amazing sleepers. Yes they have all scared us half to death walking us up due to a nightmare or a headache or not feeling well but not every single night! We are 40 years old. We are getting tired. Very tired.

She is lucky she is cute

We realized she sleeps great with a sibling in her room and desperate times call for desperate measures so every weekend her brother would join her for a sleepover. They both love it and we were so excited to get some much needed we think but then we remember our aging dog that decides to bark until we let him outside somewhere between the hours of 12 AM and 2 AM. Seriously, what did we do to deserve this?! We need solid sleep to even have the energy for 5 kids, take care of our house and run a business.

Recently we hit our breaking point. We decided her brother can not sleep in her room until she sleeps all night, every night. We have no other choice. She has been doing really well because she loves when he sleeps in her room. They are the cutest siblings. The kids bounce around bedrooms on the weekends and all really enjoy their little slumber parties. This is working and she is doing much better, thank goodness!

Now for the aging dog. He sleeps in the basement which is two floors down from our bedroom. Two children have bedrooms down there and I believe he tries to avoid the cats. He is old and goes to bed around 8 pm. We try and wake him up around 11 pm to go out one last time but even that doesn't work. His bark jolts us awake yet no one else in the house wakes up so it is always on us. He won't even come back in the same door you let him out so you have to walk to the other side of the house which happens to be the coldest room in the house to let him back in and this occurs anytime of the night between 12 am and 4 am. We recently tried waking him up at 11 pm and letting him out and then taking him into our room and wishfully hope he sleeps the rest of the night. This worked for a whole 2 nights! This week we did the whole routine and got him settled upstairs and the cats scared him so downstairs he went to awaken us hours later.

So our sleeping dilemma may never end. Lily has been doing well this week and has been sick so I am very proud of her. The dog has not. We did get a whole 2 nights so I guess we will take that! One day we won't have a dog and the kids will be all grown so I guess we will just have to wait for that time in our lives!