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 When I met with our Neurologist to take a look at our son's MRI and go over it with him, I had no idea how very scared I would become. I was informed that our son had a 10mm "cystic lesion of the pineal gland" and had no idea what that meant or what it would mean for our family. He pointed out to me where this cyst was and felt very sick to my stomach to see him pointing right to the middle of my son's brain and to a very apparent circular shape in his MRI. While outlining the cyst with his pen on the computer screen he just kept on repeating "See this? It's rough. See here? It's rough. It's rough". Cysts are supposed to be round and my son's cyst has a rough edge that is large enough to be touching his cerebellum and his ocular nerves. He also told us that cysts can and will grow and that we'd need to go to a Neurosurgeon at that point. Luckily, I had my good friend Adria by my side to re-inform me of everything after-the-fact as I was worried that I would forget something important! In addition, I was informed that Abram would have to go through a secondary "high contrast" MRI to find out if it is benign or not. It is now going on three weeks and Medicaid has yet to approve the second MRI and sent us a letter last week stating they will be canceling his insurance through them as of August 1st. So, we now have 16 days to find my son coverage and despite what they say... you can and will be denied coverage for "pre-existing" conditions since we just were told by our private insurance company that they cannot and will not cover him due to these reasons. According to the National Organization for Rare Disorders, "larger pineal cysts are rare findings". Hearing that the thing growing in your son's brain is "rare" is horrible. Even scarier is the fact that we have had a close family member recently overcome and recover from Brain Surgery after being diagnosed with a Stage Four Pineal Gland Tumor. Due to the fact that Abram's "cystic lesion" is already 10mm and is already symptomatic it is inevitable that my son will need brain surgery to remove the lesion from his brain. When I got the news about what was in our little boy's head I spent my nights searching for information and had a hard time coming up with much tangible information about my son's condition. I joined Forums and Support Groups and even Secret Support Groups. I was shocked to see how many adults were complaining of horrible symptoms with cysts smaller than my son's. I felt that THAT explained why we have more "bad" days than good. If my son feels how these adults feel than no wonder he is so crabby and not feeling good most of the time. We have days where its a struggle just to keep him comfortable. However, one name kept getting brought up in all of the forums and support groups and that name was Dr. Hrayr Shahinian of the Skull Base Institute. I looked at their website, read every single word on their website at least a handful of times and talked to former patients and parents of children who are also going through a similar struggle. So, my Dad and step-mom gifted us the hefty consultation fee and we and overnighted Abram's MRI and his 408 page Medical Record to Los Angeles. Within the week we spoke with Dr. Shahinian over the phone to hear his opinion of our son's situation. Dr. Shahinian immediately made me feel at ease with that calming voice of his but he went right into what he had to say to us. He confirmed that the cyst is the cause of our son's vision issues but did not feel that it is what is causing his Hypotonia. He went on to say that it is small compared to the cysts he sees (as he sees thousands of them a year as opposed to the Neuros here who rarely see large pineal cysts). However, he also confirmed that brain surgery would be in our son's future since it is already symptomatic and he went on to say that he advised against us getting the second high-contrast MRI because it's so hard on little kids and instead suggested that we just get another MRI in one year and measure its growth at that time. I never thought I'd be disappointed that my son couldn't have brain surgery right away but that is how I felt. If we know it's already causing issues and effecting his vision why not get it out while he can't remember what happened. Having to hurry up and wait doesn't seem like an option to me but it at least gives us more time to try and raise the funds that we will need to pay for said surgery. Insurance will not cover the procedure and the surgery alone is $100,000 not including the surgical team, nurses, anesthesiologists, hospital stay and travel expenses. I've heard that the final cost is in the upwards of $250,000 from several former patients. Thus the reason to start our fundraising efforts now. I am trying to be reasonable and set a goal of $100,000 by his next birthday since cold cash seems to walk the walk more than any other bargaining tool there is when it comes to one's health care. Meanwhile, I informed Abram's Opthamalogist of our findings with the MRI and he personally called me after he had a full day of surgeries just to discuss our son's case with us. He told us he is very interested in Abram and wants to see him again at our earliest convenience. That it is rare that the cyst would be pushing the exact same pressure on both of his eyes and that he recommended getting the second high-contrast MRI just to be confirm whether it is benign or malignant. Dr. Shahinian is an expert in his field and I trust his opinion and value him as a Brain Surgeon however, the Opthamalogist reminded me that Dr. S has only seen Abram's medical records and his MRI and that he has not seen him in person as he and our Neurologist had and that our Neurologist would not have ordered a second MRI unless he felt that it was medically necessary. So, since two out of three of our Specialists say that the second MRI would be of some good we have decided to go ahead and go through with it. Hopefully Medicaid will see it our way and approve it so we can get Abram the procedure before Medicaid cancels his coverage. So, we are currently just waiting and hoping that Medicaid comes through for us and allows for us to get that MRI before they dump us and potentially leave us without any health coverage. In the meantime, I have applied for Hawk-i and hope that we can get that insurance put into place as soon as possible and that with all hopes we qualify to get it. Abram's dad has insurance through the company he works for but he works for a small business so their rate premiums are through the roof. Purchasing insurance through them would put us right back to living paycheck to paycheck with no savings and a $9,000 deductible before they cover a penny. Add to that the fact that they have already stated they will NOT cover the surgery and I am just feeling angry and overwhelmed! So.... off to do some more waiting! Resources: American Journal Of Neuroradiology US National LIbrary of Medicine - National Institute of Health Skull Base Institute It's really hard to write a blog about your child and not get emotional. I always heard that "children change everything" but had no idea how loud that would ring true in our first year of parenthood. So much has changed from how I look at the world, how I look at people and how I react to both. I've been told that I expect too much out of people but I think that life is too short to not expect the best out of the people who claim to love you. We have suffered a lot of losses as far as friends go but being the lucky girl that I am, there were plenty of amazing people who stepped up and helped me when I needed them the most and for that, I will truly be thankful.
Just eight weeks ago we went from having a son who was "behind on his milestones" to having a son that has special needs, has started Physical Therapy and Occupational therapy as it was discovered that he has Hypotonia (for which we are still trying to figure out an underlying cause) and after being referred to a Neurologist (due to an issue with his eyes) we were told that our son has a Cystic Lesion of the Pineal gland and will need to be referred to a Neurosurgeon in the near future to remove said cyst. The scary part is the fact that the cyst is right in the middle of his brain and is one of the most dangerous of all brain surgeries. After a lot of research we found a Surgeon who does this operation endoscopicly as opposed to "open" brain surgery and after a pricey consult with Dr. Shahinian of the Skull Base Institute in LA we were informed that the cyst is definitely the cause of our sons "pin-point pupils" and that he would need to have the lesion removed in the near future. However, our son is much too small for the surgery right now and the dangers of said surgery would be higher than allowing the cyst to grow. So, we are to catch back up with him in a year. A WHOLE YEAR. |
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
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