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💖💖

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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.

The Great Pull-Up

Atlas has reached a huge milestone since my last post. He’s been crawling for some time now, and over the past week he’s began to pull himself to standing with furniture , the laundry basket we keep his toys in (super easy/cheap toy storage) or his favorite and the most nerve racking for me our dog. Our poor dog has become Atlas’ jungle gym, of course I’m trying to redirect him, but our beautiful English bulldog Scrapper has been super patient with his little friend. I really need to catch it on camera because it is insanely adorable. That dog is Sage and Atlas’ best buddy. I’m so proud, and also in awe. I am not ready to have an almost fully mobile baby.

We got confirmation that he’s doing pretty well physically today from a physical therapist, so that’s great news. We recently got him started with early intervention and one of the first steps was a PT eval, and for now he won’t be needing that service, but so grateful it’s available if ever needed. They are also trying to get us in with In-Sight for a pediatric Functional Vision exam. It’s quite obvious that Atlas has vision issues, but this exam will asses as to how his vision is or can/could/might affect his functioning currently, or as he grows. I’m excited for this screening as I’m certain his vision is affecting his functioning, just at what level. As far as I can tell he seems to be functioning pretty well, but as I’m not a professional there may be things I don’t notice and things I could do to help him. If I have any other Congenital glaucoma, congenital cataract etc parents following my blog, I do believe he has some depth perception issues, has anyone else experienced this ?

Pesky Patching

Any parents with children who have vision problems patching?? How early did you start patching with your child? With little ones it can be tough. My son Atlas was a few months old when we were instructed to start our patching journey. It began as a few hours every other day and our current goal is 6 hours daily. For those of you who don’t know what patching is, or why we patch, essentially you place an eye patch over your child’s stronger eye in hopes that it will strengthen vision in the weak eye. We use adhesive patches (almost like a band aid) , let me tell you my magoo (aka Atlas) figured out how to take his patch off way sooner than I had ever hoped. Some days are more of a struggle to keep the patch on than others. It doesn’t help that he is also teething making him extra irritable (literally has a minimum of 4 teeth I see trying to make an appearance ) , making this whole patching business a nuisance to him. However patching is super important, so I push through and continue to try to find ways to make it bearable on his off days. Once those pesky teeth pop through, I think he will be a bit more compliant.

A bit of a background on patching and what’s its used to treat: Patching is used to treat what they call amblyopia, most of you probably know this as “lazy eye.” The patching treats the amblyopia or “Lazy Eye” by covering the eye with better vision and forcing the weaker eye to work and make better connections within the brain. It’s very important to treat amblyopia as early as possible to avoid vision loss. In Atlas’ case the vision in his “bad” eye will likely always be minimal, but we want to do as much we can to keep his vision as strong as possible.

Thanks to another patching mom on IG, I learned August is amblyopia awareness month. So if you see a kid with an eye patch, don’t fret. More than likely they are just strengthening their eye and have no injury. People always assume my boy had surgery, or some kind of injury, that’s not the case.

So to all those groovy patching kids in the world, rock those patches!!

Channeling a “Healer”

My mother in law recently went to a channeling and was told that Atlas will be a “healer”. While I don’t necessarily believe in that kind of spirituality , I do believe there is truth in this statement. I truly feel both my children are healers. starting back to 3 and half years ago when Sage was first born, even before she was born. My mothers cancer diagnosis followed my pregnancy pretty closely, my pregnancy was a source of strength and something special to look forward to for our family. Unfortunately my mother passed away less than two weeks after Sage’s birth, but her birth was a source of healing for both my mother and I. knowing Sage was coming helped give mom strength to keep going. The day we were released from the hospital Sage was able to visit her grandmother at the nursing home. That was a healing moment if I have ever seen one, the look of peace and happiness on my mothers face was amazing. although it was extremely emotional and bittersweet for myself, knowing that they were able to meet was the start of my continued healing from losing my mother. Beyond that Sage just brings so much light and joy to the world, it can heal even the darkest of days. She has been such a light in our families.

Circling back to Atlas, I absolutely see him as a healer. He was our ‘unexpected” child, I wasn’t actively trying to conceive but I wasn’t actively preventing it either. At first his glaucoma diagnosis was a hard pill to swallow, it still is, but I know he is going to be a healer.He will do great things.  This blog is part of our healing, writing has always been v therapeutic for me, though for many years I took a break. Part of why I started this blog was to heal personally, and help other parents, children, and families with congenital glaucoma heal and deal. I have a vision that my boys adorable face, can be the face of Congenital Glaucoma and bring awareness and enlightenment to this relatively  rare issue. I want  our family to be a face for,  and a source of encouragement to other Congenital Glaucoma children and families. No matter the end result or how well his vision turns out to be, he is healed. He is a happy well adjusted little boy, with an immense amount of love and support that we couldn’t be more grateful for. Everyday he is healing, getting smarter , stronger and healing those around him with his infectious personality and cuteness.