.Well, it is official! Abram is finally crawling at 13 months! It is so exciting and terrifying at the same time because now he wants to go-go-go! You can tell that he is so proud of himself and he often just crawls across the room and lays in the hall staring at the ceiling, proud of his new victory.
We are always super busy so it seems like we rarely get to make time for anything else other than his much-needed nap times and all of his appointments.
Things have changed up a little bit now that school is back in session so now he gets Early Access on Mondays (altering Physical Therapy and Occupational Therapy every-other-week) and on Tuesdays he gets to go to ChildServe for his Physical Therapy in their cool gym. I like both kinds of therapy for different reasons though. With Early Acess it seems like Abram is less-likely to have a meltdown because he is in his own environment but at ChildServe he gets to be in a place with other kids who are getting their Physical Therapy too so he will grow up seeing that there are other kids with similar struggles.
Abram is having a hard time adjusting to his glasses and it seems nearly impossible to keep them on a one year old baby. His Occupational Therapist joked that it was a good use of isolating his thumb but not for a good reason! He just yanks 'em off even with the band that is supposed to help keep the suckers on! He just sticks his thumb under the frame and yanks it right up and off. Sometimes it gets stuck on his (ahem, large!) forehead but he howls at me to take care of it for him and to his disgust I put them right back on. We keep getting into trouble for him not wearing them enough but Abram is persistent and seems to have more patience than his mama! But we'll get there!
His foot braces really seem to be making a big difference. The "poofiness" of his feet is slowly starting to go down and now that he has a pair of shoes that actually fit (his first pair was a size and a half too big) he can get around a little better! With the old pair, he'd get frustrated that he couldn't even try to crawl because he'd get stuck on his shoe! Now he's ready to go and is getting better at letting his Physical Therapists do the weight-bearing exercises with his legs. Even his Neurologist confirmed that without them on, Abram will bend in half - doesn't even want his feet to touch the ground - unless he has his braces and shoes on. Apparently, that issue has a lot to do with his Hypotonia so I am really hoping that we can figure out the cause of that so we can get him on the right track/treatment for that if there is more to it than what we are already doing. The Orthotist even gave him a pair of seamless socks because with his sensory issues, the seams on socks drove him nuts! I looked into getting him another pair and they are $15 a pair! What?! So, I think that will be on the wish list for Santa!
The good thing is, I have received a lot of positive feedback for catching it so early and how much he will benefit from that so that makes me feel like a proud mama. It just proves that a mother's instinct is ALWAYS RIGHT. If you feel in your heart that something isn't quite right or that something is "off" about your child, please, please, please get a second opinion. We definitely got a second opinion! Not to mention a third and a fourth! Keep trying until you get someone who will take a vested interest in your child. I cannot explain what it means to me that I have had numerous people in the medical fields reach out to me, personally, on their own time - just to discuss my son, how we are doing and how things were progressing with my child. We have an excellent Pediatric Neurologist, Opthamalogist, Optometrist and Chiropractor who have gone out-of-their way to let us know that they have our son's best interests in mind and truly care about his well being. I honestly thought that care like that went out the window after the experience/TRAUMA we had at his birth so if you are one of them... and you are reading this... THANK YOU. Your kindness has made me cry more than once.
Things are looking up. Things are happening! Abram is improving and learning new things every single day and the best part of all of our news is this: The Neurologist told us that his MRIs show NO permanent brain damage to my son's brain and that he interacts like a "normal" child. He just happens to be trapped inside a body that doesn't quite want to work yet but we are trying to figure it out! So, now we are on a witch hunt of sorts to figure out what is causing his Hypotonia. Unfortunately, Hypotonia is typically the side-effect or cause of another underlying disease so now we are on the (very long) waiting list to see a Geneticist to see if we can rule out any Diseases/Disorders.
Anyhow.... I guess the point of this blog is to say HOORAY! Abram is crawling! (In your face Mr. Orthopaedic Surgeon who told me that we could "do physical therapy until we're blue in the face and it wouldn't make a difference". You were wrong.) It's amazing what a positive attitude and the absolute inability to "give in" to what ONE doctor tells me. My son is crawling. And he WILL WALK, I am sure of it.
Many thanks to all the amazing people I have met along this journey and all the people who send me kind words. It is much appreciated the one thing that makes my days brighter when we're having a bad day/night or week! You're the best.
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
Hi! I'm Erin. I'm Abe's mama, a tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.
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