In GOOD POSITIVE NEWS - life is not all scary and overwhelming all of the time! We have made great strides in Physical Therapy and Occupational therapy and discovered that with the use of a compression vests and compression clothing Abram feels more comfortable in his environment. The first day that our in-home therapist brought over a pair of compression pants, ABRAM STOOD for the first time in his life. He literally will not put weight on his legs on his own, nor will he put his own legs down if you are holding him to try to get him to stand - he just simply bends in half if you try.. but that day with those compression pants on he went from sitting on my knee TO STANDING without any help on my part at all and even stood at his musical toy and played for a little bit! It absolutely wore him out and it didn't last very long but he DID IT. My son stood at 16 months old and I cried. It was wonderful. I WILL be getting a picture of this! You gotta see him all snug in his little pants! We are currently borrowing compression pants and a compression vest from Early Access but ChildServe is helping us with our insurance to get him his own compression outfit from Spio. Hopefully insurance will approve his garments and we can work hard at home to get him up, standing and walking! Our Neurologist promised to take us out for dinner if Abram is walking by our next appointment! 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 I have come to absolutely LOVE Tuesdays, as these are the days we alternate Occupational Therapy with Physical Therapy! Today his two teachers/Occupational Therapists came to introduce to him a new realm of toys to help him with his sensory issues. What's best is the fact that these ladies are teaching ME so much on how to deal with him being freaked out by certain textures and how get him to play with toys that typically would for no better explanation - freak him out. You know how you always see the home videos of kids devouring their cake at their birthdays or grabbing handfuls of food to shove in their face? Not this kid. When he touched the frosting on his little cupcake at his birthday party he pulled his hand back in absolute disgust and looked as if he had stuck his hand on a cactus. He did not enjoy it and he wanted to have nothing to do with his cute monster themed cupcake. So today, the Occuplational Therapists introduced new toys and textures to him to see how he'd react. There were a few toys he wanted nothing to do with (a squishy rubber frog and two things resembling kush balls) but he enjoyed playing with a crinkly mylar balloon, a small slinky and a crinkly spiral ribbon that looked like an old gift wrapping bow. He does not do squishy, apparently. It was interesting to watch how he'd explore the toy with his feet and how he'd hide his little hands behind his back so the icky toy couldn't touch him. However, if it was a toy he became okay with, he would eventually grab it to further inspect it with his hands. He of course is a baby and gets bored easily so within the course of an hour we did a lot but they are confident that they are seeing great improvements in his behavior so that made this mama feel pretty good about that end of things. I try to spend the majority of my day with him on the floor playing. He loathes walkers, jumparoos, bumbos and the door frame jumpers. He does not like the feeling of just being stuck in something at all. Our PT advised us against the use of those gadgets and advised us to stick with floor time and it seems to be paying off even though my neck and back may disagree. Right now, Abram just turned one and is functioning at about a six month old level. I'm okay with this considering when I met these ladies Abram couldn't sit up at all and wasn't even attempting to crawl. He can now eat a variety of foods (not just purees) and he moves in with his mouth to indicate that he wants more. He still can't pick up small foods or drink from a sippy but he can finally hold his own bottle so that is one hurdle I consider conquered. If I concentrated on all the things he *can't* do I would become overwhelmed and wouldn't be able to see the importance of all the little things. So, he might not be hitting his milestones but he is learning and improving every single day and those are the moments that matter the most. Yesterday Tracy and I took Abram to his one-year appointment with his new Pediatrician. His exam was longer and more thorough than all of our previous pediatrician's exams altogether. In fact, if it weren't for us meeting his new Pediatrician via a life-changing happenstance of a walk-in clinic, our son would not be on the road to getting the help he needs as he was the man who referred us to a Neurologist the first time he laid eyes on Abram and asked immediately "what's wrong with his eyes" the moment he walked in the door. This was especially impressive considering Abram's old doctor never noticed any of the issues that seemed to be quite obvious to everyone but him!
We didn't get any new mind-blowing crushing news yesterday so that was quite wonderful and our new Pediatrician is even referring us to Orthopedics to see if they can be of any assistance with Abram's Hypotonia issues. He seemed to think that the Neurologist could guide us on the Hypotonia but he had previously stated (as did the brain surgeon) that there was nothing in there to indicate that the brain was causing it, so I don't quite know where we go from here to figure out that part of the puzzle. I have since joined a Support Group for Parents of Kids with Hypotonia and the consensus seemed to be that most parents have no clue why their kids have it and a lot of them have put their kids through muscle biopsies, spinal taps and genetic testing. However, it seemed that regardless of the outcome that the answer was Therapy so I am hoping that Abram can work himself out of it to at least be able to walk before he turns two. Abram was also just fitted for foot braces this week as well. We picked him out some super cute Dinosaur foot braces with black straps and he will get a sweet pair of New Balances as well so that's cool. He'll have to wear certain kinds of footwear to allow for the brace to fit into the shoes. I'm a little nervous about forcing a kid with SPD issues to wear socks, foot braces and shoes all the time because as of right now, Abram can't even handle wearing socks! Hopefully we can work through it or he can get used to it, I hope? So yes, that is where we are for now. Still waiting on Approval for our High Contrast MRI which will tell us if his cyst is benign or not. The Brain Surgeon we sought consult from stated that it was just a cyst and that he could tell from his scans but the local doctors feel confident that a second MRI will give us more answers so we are going to try to go ahead with that as long as Medicaid approve it before the dump us on August 1st! |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
|