Today was a pretty good day. Abram had his first private Physical Therapy appointment at Child Serve that went really well. He seemed to really like his therapist and didn't start getting fussy until the very end but it involved the touching of a rubbery item which always seems to send him over the edge! This little man definitely has some sensory issues with items made of rubber and things that are squishy! The best part about the PT was the fact that his therapist was so impressed by how much he had improved since his evaluation! Since June he has been able to sit up, pivot and go from sitting to hand-and-knees and back! So, he is getting all new goals written for him which is a great feeling!
Then he had his Occupational Therapy at home today as well! The two therapists that come for that are so enjoyable and Abram likes playing with them. Today they brought him a great sensory toy that involved a container of rice and toys in which he wanted nothing to do with but he did show them how he likes to take toys out of containers and bang them together which was one of his short-term goals so this kid is rockin' it lately!
All of the therapists were excited to hear that Abram did his first "crawling" yesterday. He didn't go far but he definitely crawled and we were so very excited to see him do that! Of course, he would not replicate it for anyone today but just seeing him do that was such a HUGE deal to us! He is still not weight-bearing on his legs but that will come with time. He's got to get the crawling down first and then the weight-bearing and walking will come. With his new little foot braces and the exercises I was shown to do with him, he should be making great strides by his second birthday! I'm hoping he proves us all wrong and walks by the Holidays but I don't want to jinx him. He's just been such a badass little boy lately! He has taught me so much about the value of patience!
The best news of the day came from our Neurologist today who informed us that Abram's cyst is hopefully "benign". So for now, his diagnosis is NOT cancer which is a big relief. He does still have that thing in his brain and it can grow but at least with it not being cancerous gives us more time to save money and more time to research who the best-of-the-best is when the time comes to get the cyst out of his little noggin. The scary part was when I asked him if the cyst could turn into cancer and he told me that he couldn't say. (Again, this is a justifiable concern as it just happened to the only other male born on my father's side.) The worst part is the fact that that thing is in my son's head and the only answer we have right now is to wait for it to grow. No one wants to open up a child's head when as of now, the only symptoms he has are hypotonia and farsightedness. So, we were told just to wait and see if Abram complains of headaches (once he starts talking) and to make sure he isn't "walking around like a drunk person". The only way that they will recommend him for surgery is once that cyst starts compressing on things and causing other life-threatening issues like Hydrocephalus. It's all so scary and frustrating. So... the only thing we can do is hurry up and wait and in the mean time just keep on working away at his developmental issues!
Yep! So that's where we are everyone! Good news with bad news and the unknown... but we are doing everything that we can for this little man to have a good life and that is all that matters! His fall/winter will be filled with lots of appointments as he will be getting Physical Therapy and Occupational Therapy twice a week and once his Speech Therapy goes into effect we'll be having even more appointments.
When I closed my shop I was really torn and heartbroken but now I know that I made the right decision. Everything fell into place for a reason. I am lucky beyond belief that I have a soon-to-be husband that makes it so that I can be home with our kiddo and take him to all the places that will benefit him the most. I definitely believe that all things happen for a reason and that maybe some day we will know why Abram has had to go through so much at such a young age but until then.... we'll just keep working hard to make him as happy as can be! Thanks for reading - and for caring! xoxo
It's always such a wonderful feeling when the kindness of people is what is overwhelming you and bringing you to tears.
Saturday was the first of what will probably be many fundraisers for Abram. My dear friend Sara (whom I have been friends with for more than 20 years) decided to volunteer her time and giant garage to having a Rummage Sale and Bake Sale in the honor of my little man. We had been throwing around the idea of having a Garage Sale in the Spring so we already had some stuff to put into it but not nearly enough to have a sale on our own. Sara was awesome and went about asking for people to donate things for us to be able to sell and before we knew it we had tons, and tons, and TONS of stuff!! So there were many nights with Sara, Shannon (whom I have been friends with for thirty years) and Alli (Shannon's daughter) sorted, and re-sorted and then sorted again trying to get some sort of organization to all the goodies that we had! It was so amazingly overwhelming! Not only did we have a lot of stuff but seeing that heaping load of goodies stuffed into my friends garage meant a lot more than that. All of that stuff was just a physical representation at how much people actually really DO care! There are people who want to help and there are people who understand what we're going through. It was unbelievable.
The sale started off quickly with people showing up an hour early to pick through stuff even though we hadn't even gotten it all pulled out of the garage yet! One woman even climbed over stuff and pushed past us just to get in there! It was crazy! Then the baked goods just kept coming in! I saw so many friendly faces and old friends whom I haven't gotten the chance to see since we closed the shop and we had Abram!! It was the best. It was heart warming. It was humbling. I CRIED A LOT.
The entire day was one kindness after another one. I even had my old Art History Professor do a surprise appearance. If you are reading this.... I just wanted to thank you. The handwritten note and the contents in the envelope you gave us brought every single woman at that sale to tears. I tried chasing after to hug you but wasn't fast enough! That was incredibly kind and generous of you and it is so appreciated. I wish you and your beautiful family all the best. You put me in awe.
The day was definitely an emotional one for all of us. It was surreal to sit there with two of my oldest friends and their three daughters (among them) all while trying to raise money to help my little baby boy. I'm lucky. I am so so so lucky to have this amazing group of friends and a community of amazing and compassionate people.
We managed to raise $1,416 on Saturday. That was enough to make us cry AGAIN and I'm sure when I deposit that money into my boy's account today I will cry again. The kindness and outpouring of love and support is phenomenal. It warms my heart and makes me feel like we can take on the world! I had a nice lady at the Garage Sale (whose Grandaughter has muscular atrophy) who reminded me that it takes an army to build a village. It just feels good to realize that you all have our backs. That my little boy is so loved and that his story has touched people. I can't wait for him to go back through his little baby book and find that note from my Art History Professor. My little boy will know how special he is and how hard we tried to do everything we could for him. He will know that he was ALWAYS LOVED (even by complete strangers) and that is the best thing that we as parents can ever do for our children.
So no matter what happens in my baby boy's life he will always remember that we loved and adored him more than anything in the world and that he saved us. This journey we are on has not been easy and I have cried more than I would like to admit but this little man is teaching me so many important things like compassion, patience, true selfless love, humility and that having faith in the kindness of people is the best feeling this mama can have.
To those of you who donated items and helped sort or baked a ton of goodies for the Bake Sale portion of Saturday's event.... I am humbled by you. I am so lucky to be able to count such generous people in my life. I know that many of you have helped me on more than one occasion even (like when my shop needed help or when my cat was sick) and I just wanted you guys to know that I will never ever forget all of the kindnesses that you have shown me and that there aren't even ways to put into words what you have done for me, for my family and for my son.
Life can be cruel and so can people. However, it is true that in dark days the kindness of old friends, new friends, strangers and even an Art History Professor will remind you that there really is goodness left in this world.
Your kindnesses and generosity will never be forgotten.
Here are Abram and I after the Sale on Saturday. I was hot, sweaty, overwhelmed and emotionally drained and without make-up but I still love this picture.
It seems like a lot has happened since my last post. Abram had his high contrast MRI (for which we are still waiting on the results), he got his first pair of foot braces (AKA as "AFOs) and his first pair of glasses came in. It seemed like a lot for the little kiddo to take in so we're weaning him onto both slowly and never at the same time!
This morning, I took him outside for the first time with his new glasses and instead of repeatedly trying to rip said glasses off of his face he actually took the world in with amazement and it involved a lot of crazy cackling!
I think it overwhelmed him though and he soon got grumpy, did a crazy cry I have never heard before and he is currently down for a nap!
It was just so cool to see that the glasses made such an improvement in the way he can see the world. It is so obvious by the way he is in awe that it truly did make a difference and I am hoping that maybe with the improvement in his vision that perhaps his fine motor skills will improve and hopefully it will help with his sensory issues too! This poor kiddo is terrified of anything squishy, slimy or rubbery and can't even bring himself to touch a banana although he loves to eat them. Ironically, a taste of a chocolate chip cook made him drool it all out in disgust and gag so that was pretty weird considering I love all things sweet and tasty and my boy loves his veggies - which is AWESOME! He wouldn't even eat his cupcake on his Birthday!
Anyhow, the glasses have amazed me and I can't wait for when he gets used to them enough that he's not constantly trying to tear them off between moments of having his mind blown about how awesome things are now that he can actually see them! I am so glad that the Opthamalogist decided to put him into glasses earlier than we had planned! You can see a video of his first time outside with his glasses by clicking here!
In addition to his new world-view, his AFO's have also been a pretty huge eye-opener for me! As most of you know, Abram also has hypotonia as well which has resulted in extremely low muscle tone in his legs and arms. He receives Physical Therapy and Occupational Therapy for that but it really seems like these little foot braces will really be making a huge difference in his mobility. When we went to go pick them up and the Orthotic Doctor put Abram in his AFOs and his sweet red and black New Balance sneakers he asked for me to have Abram stand, to which I replied that he can't bear weight on his legs. He asked "Can't or won't" and I tried to explain to him how he never has, how he always bends in half and cries as if it hurts him. However, as I was saying this, I felt Abram's feet hit the ground for the first time and his knees didn't buckle and he did not bend in half! Then, he actually bent at the knees and straightened his legs again as if finally feeling what the ground is supposed to feel like for the first time.... and all of the hair on my arms stood up at once and I had tears rolling down my cheeks! He collapsed in half immediately after but I felt my son feeling his own power for the first time and it was unbelievable.
I cannot wait to see where this child is going to be in the next few months. They don't think that he'll walk until he's about two (and that is okay)! It's just such a thrill to see him blossoming and getting that sense of self! This little boy blows my mind every single day.
Hi! I'm Erin. I am a single mom, tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.