Making Memories

I’m getting so excited about the holiday season. It’s my favorite time of year. I love the smells, the yummy food, the family , friends and laughter. I’ve decided to host thanksgiving this year , which will be pretty low key but I’m still happy about it. My head is spinning with ideas of what I want to make, obviously the traditional turkey but for the sides do I want to do plain old stuffing or stuffing with cranberries or some other fancy smancy stuffing. I know this sounds ridiculous because it’s just stuffing , but you know it’s more than that. It’s the taste , the flavor the conversations it will start and the memories that will be made.. whether we have a big turn out or a small cozy gathering.

Then there’s the parade. There’s nothing like the enjoyment of watching the Macy’s Thanksgiving Day parade ( this year I’m figuring out how to stream it beforehand, so we don’t miss out like last year). Sharing that tradition with my kids will be awesome! I dream of being there to experience it in person …. some day it will happen.

But really the nest part is time spent with my loved ones making memories to last a lifetime. Which is why I love this season so much I get to see my family a bit more than I regularly do and I’m always okay with that.

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Wacky Weekend

Friday

Atlas, myself and my Aunt ventured to New York to meet Dr.Zaidman a cornea specialist out of Hawthorne, New York. The appointment wet well , I should receive a call from his office in the near future to schedule an EUA (exam under anesthesia) which is the best way for the doctor to get a full and accurate examination of Atlas’ eye. We even met an adorable little boy and his parents, and I really hope to become friends( we exchanged info). It will be so nice to have a mom that understands all our stuff, and have kids that are very close in age that struggle with eye issues. I’m really hoping that we just made ourselves some new friends.

Saturday

Atlas spiked a fever of 102.5 in the evening and has been a bit stuffy for a few days. I gave him a fuse of Tylenol and it seemed to help. Then I went to turn the tv on in my room so I could snuggle the kids in bed, No such luck our best room tv apparently kicked the bucket …

Sunday

My poor boy is still fighting a fever , it seemed to continue to creep back up in the mid 102 range so I took him into the sick care. Thankfully it was a pretty painless visit and little wait time, but he was diagnosed with his first ear infection(right ear). He know has to take amoxicillin for the next 10 days, uggg. A few hours after coming home his temp spiked again this time to 104.3 , scaring the crap out of me. I of course immediately put a call in to on call doctor -end result she thinks it might not even be related to the ear infection but from his mmr vaccine which he got lost week. So thankful we have vaccines for terrible diseases, but I’m so not a fan of these icky side effects.

Hopefully the next few days run a bit smoother…

Wild Child

I recently read ( or partially read, I didn’t finish the entire e-book before the library loan expired) on parenting. The title of the book: How to talk so little kids will listen, by Joanna Faber.

You see , my daughter Sage is just like her mother, like most of the females in our family ( if you know us, you’ll understand, and if you are one of us you’re fierce and I love you ) she is smart, willful, inquisitive and a bit of a bossy pants. I love her dearly , but effective parenting with a strong willed child can be a challenge. I want her to know her boundaries, to be kind and respectful; I never want her to lose her spirt, to lose that curiosity. As the years pushed by and adulthood set in I definitely have, like most of us do. But I’m hoping with the right boundaries and freedoms she can claim that spirit for the entirety of her life.

Obviously this book is on parenting, and has strategies on how to better communicate with children and elicit better results and behavior. It’s been about a week or so and although she still has plenty of moments and is rather rambunctious I see marked improvement in her attitude. The book is about communicating on the child’s level, about calmly reacting to situations and not reacting in anger. About letting go of the idea of having control , and with proper guidance allowing the child to have control of their actions and reactions. I’ll say one thing , it certainly makes sense to me. While I’ve always had some level of respect for authority and elders because it’s he right thing to do , I’ve never blindly respected someone. How can I respect someone if they don’t show respect to me? Yes my kids temper tantrum is aggravating and seems completely trivial , to her though these big feelings are important and confusing and hard to sift through. How can she learn to process these feelings and control her reactions if my reaction is just to yell, punish or demand something of her? I’m sure some people are thinking I’m a bit crazy, you don’t have to accept the behavior , just acknowledge their feelings and help them process them and problem solve their own solutions. Children are extremely smart, resilient and really just tiny little humans. Yes grown up problems are more pertinent than kid problems, but the feelings they elicit are no different in adults than kids. We’ve just learned to express ourselves and deal with our emotions properly.

I’m learning to approach problems differently , to try to breath more and that unless her or others safety is directly at risk , it’s ok to take a breath and think my next step through. I don’t need to have an immediate reaction, because likely it will come from a place of frustration and anger, in return eliciting feelings of anger and frustration in her and setting the stage for a crappy ending. Here’s to hoping it works, I’ll tell you one thing since her brothers arrived she’s been a bit different , I feel like I’m getting my girl back. She’s been kore cuddly and snuggly like she used to be and I kind of love it❤️

He’s got the whole world in his hands 🖐

Today is a big in our home, not only is it a super fun holiday where you get to dress up and play pretend, it’s the day Atlas made his grand appearance into the world.

That’s right folks today our curious, adventurous adorable little guy turns from baby to toddler!!! It’s Atlas’ first birthday.

It has been 365 days of adventures, some laughs, some tears, some anger but most of all it’s been filled with so much love. Love for each other within our little family unit, love from our extended family , friends and strangers. Everywhere we go, we are stopped (usually many times) to be told how cute Sage is, or how adorable Atlas looks in his eyeglasses. Of course we have some less welcome questions , like Are this prescription glasses? I couldn’t tell you why this particular question gets my panties all twisted, oh wait I could…. just my humble opinion but why would anyone make their child wear glasses if it wasn’t necessary. I’ve worn glasses for about 25 years and while it’s really not so bad, I certainly wouldn’t do it everyday if I didn’t have to.

I love that Halloween is his birthday, and I hope he grows to love it too. I chose to have him today (scheduled c-section) as a tribute to my late mother who enjoyed Halloween, and all the spooky things and she loved her horror movies. I truly believe she would have gotten the biggest pleasure out of his being born Halloween day.

The day we came home from the hospital I was ecstatic, his birth went well and we got to go home as scheduled. With his sister we spent a short amount of time in the NICU and that was quite stressful. My dreams of an easy release were shattered after his first doctors visit. That day started our whirlwind journey of eye appointments. It’s been so fun watching Atlas grow and learn. He can now walk with his walker, pull himself up to standing, drink on his own, say mama and dada. He does better than I could have ever expected with his glasses, patching and ongoing appointments. He certainly has his days where it’s a battle, but more often than not he goes with flow.

It’s been a year full of learning, learning about myself, my family about they eyes, glaucoma , cataracts and other eye issues. I’m on a quest to learn as much as I can about the eyes, how they work and what to do to help him. I want to be the best advocate I can be for our son. This journey has also given way to new dreams for this mama. I’ve started this blogs not only just wanting to share our journey, but to help and inspire other families that may be in similar situations. I don’t yet have a solid plan, but advocating for Atlas and childhood eye conditions has become an important part of my world. I hope that I can find a way to really do that in the near future.

Happy Birthday to my dear boy Atlas, you’ve got the whole world in your hands and I hope and pray that you will make an impact everywhere you go💖💖

Adventure Awaits

I know we’ve been pretty quiet, life has been very busy. Sage started a new weekly ballet class. I’ve had a few appointments myself, and just life.

Atlas had a bout of pink eye that seemed to go away with antibiotics, but then as soon as we stopped the drops came back. We are just finishing the second go of antibiotics, I’m really hoping this time it’s gone for good. I’m also praying that patching will be good, since I’ve scaled back considerably on patching through the pink eye, so we need to get back on the patching train and chug chug chug along. When he had the second round of pink eye , a trip to his regular ophthalmologist was in order. During our visit, the doctor brought up a conversation we’d had in the past. You see Atlas has a multitude of things going on in those little eyes. His ophthalmologist had mentioned possibly seeing a cornea specialist in New York to get his opinion on his cornea and pupil issues. At our last visit she said she thought it was time and that she would be contacting Dr.Zaidman.

Today I was contacted by his office staff and In two and a half weeks Atlas , myself and one of my aunts will be making the 3 hour journey to the White Plains area of New York to meet this new doctor. I’m excited , I’m nervous and hope that this visit brings us more knowledge and insight on what’s going on in our sons eyes and what we can do to help him. It will most certainly be the start of a new adventure in our vision journey. I will always be my boys number one advocate and quest for more knowledge.

Patching and Play

I’ve recently been inspired to incorporate more sensory play into the kids lives. Sensory play is important for all babies and young children. Sensory play is basically any play that involves children combining all their senses in play, olfactory, auditory , vision, touch and taste. Why is sensory play so important ? Sensory play encourages cognitive development and encourages kids to use all their senses to learn. This is also why giving your children freedom and allowing them to play how they want without intervention is so important to their development of problem solving skills. I strongly believe that for Atlas and other kids with visual impairments this type of learning through play is even more important as their other senses will help them better understand the world around them , when they can’t rely on their vision as strongly as well sighted persons can. I don’t know for sure exactly how well he can see , because he can’t tell us. Through the way he acts and plays, I think his vision may be a bit better than expected , but he definitely has depth perception issues and sometimes needs items very close to his face to really absorb what they look like. I’m hoping that soon he will have his functional vision exam to give us a better idea of where he’s at visually.

For sensory play ideas Just look on Pinterest for sensory activities and there is a vast plethora of fun ideas. I try to choose ones that involve edible ingredients especially for Atlas like most babies ,whatever he’s playing with will more than likely ended being taste tested. We’ve done many activities, playdough, moonsand, foam , water play.

Here’s some good info I. Why sensory play is important and some cool activities to try. If you’re a parent please share with us your favorite sensory activities

http://www.canr.msu.edu/news/cognitive_development_and_sensory_play

https://creativeplayuk.com/benefits-of-sensory-play-for-brain-development/

https://pin.it/vri5czkr6fulr6

A Day in Boston

Yesterday was a big adventure. Atlas had a check in with Dr.Chan (glaucoma specialist) at Mass, Eye and Ear. The doctor was super busy, we had to wait 2 hours before we were seen. It happens, certainly not the funnest time, but that aside I’m exponentially grateful that we have some of the top specialists in our neck of the woods. The appointment went super well , his eyes look good and pressures were pretty stable. His are always on the high range of normal, but that’s his baseline. Doctor also said the shunt placement still looks good, which was great news. So for now barring any unexpected issues we have a check up with the pediatric ophthalmologist in just over a month and don’t have to return to the specialist until January. It’s still nerve racking though, I’m ecstatic that he’s doing so well , reality is though that at some point there will be more surgeries and that makes this momma a bit uneasy. That’s just part of our life though, and I’m learning to accept that.

Fast forward to the second part of our day we were able to meet the president of the Children’s Glaucoma Foundation ,Dr.David Walton. The foundations main focus is to support research efforts, they also assist families in need and childhood glaucoma awareness. I met with Dr.Walton because I’d really like to get more involved with the foundation. Like many parents in our situation , the only reason I even know childhood glaucoma’s exist is Atlas’ diagnosis. I want to be part of helping other families that have children with glaucoma and want to spread awareness as much as possible. So if your reading this go take a look at http://www.childrensglaucomafoundation.org and read about childhood glaucoma and watch the video on the site. And if your so inclined make a donation small or large, everything matters.