I'm sitting here with tears rolling down my cheeks and I don't really know why. Well, I know why.. I have a hundred different reasons to cry but today it just seems like my seams are coming unstitched a bit.
Things have been hard since the moment Abram came into this world. I have been trying my hardest to handle the hurdles in our life with as much grace as possible but I have my moments (days, hours, seconds) of just sheer agony and a lot of weeping and then I feel guilty because so many other moms/families have it harder than we do. Yet then there is this anger.... resentment (?)... jealousy of the life that my little boy will never have. I try my hardest not to cry or feel sorry for my family and for my little boy but today is one of those days where I want to run outside and scream at the sky about how god damned unfair it all is and how angry I am.
Since my last post we saw an Orthopaedic Surgeon and Abram just underwent his second "high contrast" MRI yesterday. The Orthopaedic Surgeon informed us that Abram's Hypotonia is the result of nerve damage due to his difficult birth. We were informed that he may never walk and told us that we "could do Physical Therapy until we were blue in the face" and that it wouldn't make a difference. He told me that Abram's hypotonia has more to do with time and the nerves having to re-route themselves. I was heartbroken and left feeling defeated.
Abram will never know the difference in what he can and cannot do but as his mama it is painful to see other kids enjoying things while my little boy doesn't really seem to enjoy much. It hurts me to see that he doesn't take enjoyment in the things normal kids enjoy and it's hard to have play-dates when he cries at any high-pitched noise because it literally physically hurts him to hear them. I feel pretty alone and lost on the inside.
Most of Abram's days have been hard ones. This poor kid has never gotten a break. He has almost always been in pain and fussing. Only, the part that is the worst is that he can't tell me what hurts. He can't tell me what is bothering him. All he knows to do is to cry and to fuss and all that I know is there is nothing that I can do right now to make him more comfortable. He always seems to be hurting and I don't know how to help him or how to make it better.
There is no pill to make my kid feel better. There is no magic potion to help him with his Hypotonia. There is no cure for that god damned thing growing in his brain (other than the very dangerous and invasive brain surgery he will have to endure).
I am literally unable to do the one thing all moms are supposed to be able to do and that is to make my little baby boy feel better. So if you are reading this and you have a healthy child... be thankful. Rejoice in the fact that your child can walk, talk, run and play. Remember that when your child has the flu, a bad day or a toothache that those things will pass and most likely for you - tomorrow (or next week) will be a better day.
Right now, I guess I just feel lost. RIght now, I want to yell WHY ME?! WHY MY CHILD?!
But then I have to remember that somewhere.... someone doesn't have their son or daughter. I have to remember that even though things are hard that this life is a gift and I have to try to enjoy every single moment as much as I can. I have to remember that although Abram's life won't be easy.... that it's his life to live and I cannot and will not succumb to self pity and anger and regret for what could have been for him. These are the unfortunate cards my son has been given and we will overcome it or live with it. There is no other option.
I have my son. I have my family. I have my friends. I have an incredible support system and people that care. I have a lot to be thankful for. I also have the right to have a bad day. It's so hard to go through all of this without hitting an emotional bump in the road. For now... we wait for the results of that second MRI and hope for the best.
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.
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!
American Journal Of Neuroradiology
US National LIbrary of Medicine - National Institute of Health
Skull Base Institute
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!
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.
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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