Hey Everyone. I have a lot to report but for that those of you who are in our daily lives you are all probably tired of hearing about all this stuff! However, for the folks who don't get to see us regularly probably haven't heard our news at all!
First of all, I am now a married woman! Abram's dad, Tracy and I got married in Northeast Iowa and spent three wonderful days in a Victorian Bed and Breakfast near the Mississippi River. The leaves were in peak season and it was beautiful! I couldn't have asked for a more perfect day! The weather warned us it was going to be cold and rainy but the clouds parted, made a beautiful sunset and we spent the rest of the night around a fire. It was absolutely perfect.
We opted to have a VERY small Wedding so we decided that getting married at my Dad's place would be perfect! We have spent a weekend there every summer going for a visit and to kayak down the Yellow River since we started dating almost six years ago (after 14 years of friendship)! So, we got Married on a little cliff overlooking that river, my good friend Jessica married us, my dad led a nice ceremony in the Medicine Wheel and we did it all with our kids by our side! Little Abram (who fell asleep for our photos) and Taylor, my now step-daughter!
We could only invite a handful of people including family so we were unable to share our special day with all the people we would have liked but it was wonderful having such a personal wedding with the people we have known nearly all of our lives! So if you are reading this and did not get invited to attend, please do not have hurt feelings! We wanted to be able to invite EVERYONE but we financially could not do it and since all of our food was home cooked we couldn't feed more than 20 people! There will be a party announcement for December coming out soon!
I just wanted to put a little medical update here about Abram, so our friends and family can keep up with what is going on. If you read my last blog post, you know how incredibly frustrated I was with the Medical Field and after filing complaints with Patient Relations with both Hospitals I have suddenly gotten the appointments I needed and the time with doctors that we have been needing so terribly. It's sad that in order to get appropriate medical care in this country you have to complain about specific doctors/surgeons in order to get the care you should have had in the first place.
Anyhow, after I complained about the care we have gotten for Abram since Day One, we finally had a Doctor take notice and try to figure things out for us. However, he was already the man we had chosen to rename as our official Pediatrician because he was the only one out of the many that we had met at the Pediatric Clinic that seemed compassionate and caring and actually took the time to listen and interact with me instead of pecking away at a keyboard while I spoke.
So, last Friday, I went in with Abe for his 15 month check-up and ended up being there for an hour and half as he had already heard about my frustrations from above and he had spent his personal time calling all of the specialists, getting copies of reports and had a lot of answers already there for me, which was a nice surprise! He answered all of my questions and we got down to the fact that we need to get into Genetics and to have that second 24-Hour EEG done to rule out seizures.
I also had gotten a phone call back from our Neurologist who confirmed that Melatonin would be something to try to help with Abram's sleep issues, that he had already sent the Geneticist referral in August and that he needs the second EEG. When I told him I hadn't head anything from the Geneticist at all he seemed pretty disgusted that I hadn't gotten a call back. I'm sure he'd be even more annoyed if he knew how horrible his receptionist is and that it took thirteen phone calls and nearly eight weeks for him to give me a return call.
Anyhow....... the point is... after stirring the pot a bit we have some important appointments coming up:
November 2 - he goes to see a Pediatric Neurological Development Specialist, which will be a group session with their Physical, Occupational and Speech Therapists as well as an Audiologist and a few other Specialists if they see fit.
November 27 - he goes in for his two month check-up with his Neurologist here locally
December 2 - he goes in for his 24 hour EEG to rule out seizures
February - he goes to see a Geneticist for the first time - and this is what we've been waiting months to get into to! It took three months just to get a phone call and then another four months of waiting! :( Waiting is the WORST when it comes to your kid!
But.... the good news is the big time specialists are coming up and hopefully we will be closer to having an answer as to what is going on with our poor little man.
In other news.... Abram is getting stronger everyday. He crawls around the house like a maniac and likes to "chase" us as fast as he can. He can get up on to "tall knees" while tormenting the cat or begging for food from visitors and he is really into his new rainstick and weird eyeball bouncy ball that glows green when it bounces. He thinks it is hilarious!
We discovered at his outpatient therapy this week that he does well with a compression vest so we are going to be looking in to either borrowing one or purchasing one as the therapist felt that it would do him some good and possibly help with his sleeping issues since it gives him the deep pressure that he needs. Abram has sensory issues in addition to his Hypotonia so she tried to explain it as.... how we can feel our bodies and feel our arms and legs in space. For Abram... he can't feel all that because his muscle tone is so low but with this thing that squeezes him - it helped him feel more grounded and more calm! So that is on the WISH LIST right now but thanks to a Fundraiser from our friends this weekend - we will be able to afford it if it is something we'll have to pay out of pocket for!!
Sometimes I get stuck on all the things we don't know but I need to remember this:
When we started Physical Therapy in May, Abram could not sit up on his own, he could not crawl, he could not hold his own bottle and he could not feed himself. Now he can do all those things. It is getting better and there are improvements! Life is getting better and easier for him a little (inch)stone at a time!
I just wanted to let everyone know what was up,
Today we made the drive to Iowa City to see a Neurosurgeon and a different Neurologist for a "second" (ahem, third and fourth) Neurological opinion. It's strange to feel excited or anxious to meet a Neurosurgeon but after reading about his Academic Background, I felt like he had a background that would cover the bases with what our son is suffering from.
Instead, I got a barrage of strange questions including: What I do for work, What I did before that, Have I been around Chemicals, Did I do drugs when I was pregnant, etc etc. He seemed very disinterested in our son, didn't pick him up, barely touched his head (just measured his soft spot) and immediately dismissed us telling us that what is wrong with him is part of a "bigger picture" that the cyst has nothing to do with his symptoms and that what is wrong with him happened to him in-utero and that we do not need to come back. He also informed us that our son has fluid on his brain (all over his brain) and that it is not hydrocephalus and that the cyst will need to be monitored with yearly MRIs.
This information was all talked AT me while he either a) kept his eyes closed shut while speaking to me or b) staring at my tattoos with a look of absolute disdain on his face. (Typically I cover up my tattoos in front of folks like that (and even my Grandpa until last year!) but it was so ungodly hot in there, I was sweating profusely and the coffee was kicking in like crazy.) I was offended, disgusted, outraged and near tears. Livid, actually. But we were quickly shooed out of there and weren't even made to check-out. I basically felt like I had been attacked, blamed for my son's condition and quickly excused. He didn't even shut the door during our consult. Needless to say I was and am extremely disappointed. *sigh*
After that appointment, we we had to wait around a couple of hours to see the second Neurologist at the Specialty Pediatric Clinic and I did like his bedside manner. He seemed hurried but he was more thorough than the Neurosurgeon (clearly) and asked more about his birth than anyone else has. He also took a look at the MRI and told us that the cyst is not causing his problems, that is is *almost* a "normal" kid and that he will most likely "grow out of it". He said that he would not recommend genetic testing or the 24 hour video EEG that our local neuro has ordered. Again - completely different diagnosis. I want to rip my hair out.
So this is what we are left with:
So what are we supposed to make of this?! We have a Physical Therapist who admits that our son is hard to deal with and that she couldn't imagine having to have a child like him in her home full-time. The other Physical Therapist has had such a hard time with him she wants to co-teach with another Occupational Therapist (the best one at the outpatient service we use) because the first person who got assigned his case turned it down as she didn't feel that she had enough experience.
People that are around him the most see that he is fussy and has a lot of issues so I am so frustrated and torn on which opinion to believe! I was hoping that out of them all at least two would have a similar diagnosis but that just hasn't happened and then we as parents are left here standing all of the (mis)information trying to figure out what is best for our son?
Who am I supposed to believe? I know in my heart that what my son is doing isn't "normal" but it would sure be nice to jump on that boat of denial. I would like to think that the cyst isn't causing issues but no one can seem to come up with another cause that could be causing him so many issues. The Neurosurgeon today is the first one claiming that our son has fluid all over his brain. If that is true, why haven't the two radiologists and the three other Neuros mentioned it?! I'm convinced that no one knows a god damn thing. I'm pretty sure that in back of the offices somewhere is a spinning wheel with different diseases on it and they throw the freakin' dart. Nah... if that were the case... I'm certain we'd have better odds of getting the same answer.
God damn it. I guess it's just back to more waiting.
Today I bawled in front our Physical Therapist after she said "I have been working with Abram since June and I have rarely heard happy sounds come out of his mouth!".
Please let me clarify that I wasn't crying about what she said but the fact that she gets it! It was important for me to hear that someone else can see that something isn't right. It's not that I needed to have my thoughts justified but it felt good to hear that come out of someone's mouth, especially when that someone spends more time with our son than the majority of our family!
It was important for someone to be honest with me about how they see things. In fact, if it weren't for a dear friend of mine telling me that what my son was doing was *not* normal at 9 months, I am convinced that I would have lost my damn mind. (Thank you, Lacy. I will always be grateful for that conversation. That meant more than you will ever know!)
I feel that honesty is an important part of this life and that sugar coating things doesn't help much other than make the sting of disappointment burn that much stronger. So, while I was trying to happily tell our son's Physical Therapist about how wonderful our wedding was and how excited I was to go see a Neurosurgeon and new Neurologist on Wednesday; I ended up in tears.
As we were discussing what needs to be brought to the new Doctor's attention and asking her opinion on what items of importance should be noted - she also informed me that she believes that he is in some sort of pain/discomfort all of the time from his brain lesion. You wouldn't think that someone would be happy to hear that but I was. Not happy to hear that my son is hurting...... but happy that someone acknowledges and confirms it. The fact that this wonderful woman who came into our life (who has nothing but the best intentions for our son) and whom has been working with Special Needs children for decades tells me that something isn't right, was exactly what I needed to hear. What's even better is the fact that she is going to write up a little something for us to take to the Neurologist as she has been working with and observing his behavior for months and knows him better than most.
Please know that there is a big difference between being honest and being hurtful. Having someone tell you that your child is hurting and that his behaviors are not normal is honest and a much needed discussion. Having people say that your child's teeth grinding, whining, crying, etc is annoying is hurtful just as is having people comment on how or what your son eats and drinks from.
I realize that most of the comments are coming from a place of love and are not meant to intentionally hurt. I am not writing this to point fingers or make anyone feel bad. I just want people to understand how things are. Informing us that our son is fussy, clingy and a mama's boy is not helpful and it really hurts our feelings.
I love that my son loves us so much and wants to be around us because some day he won't want to be. At night when he has woken me up for the fifth time and I have gone weeks without more than a few hours straight of sleep.... I remind myself to keep calm and I stare at his little face and realize that just in a matter of years he will no longer want to be held or rocked and that right now he needs me and that is okay. That doesn't mean that I don't have days where I need to walk away and scream into a pillow because it is too much because I do have those days but it does mean that when the people we love look at him negatively because of his Special Needs it hurts.
Yes, he is fussy. He has always been fussy. He might always be fussy. However, right now he is a BABY and he can't tell us what hurts. Please remember that he has a Cystic Lesion in his brain that is symptomatic.... it is a very real thing that only 1.5% of the population has to deal with and it is incredibly rare for a Pineal Cyst to be as large as our son's cyst is. It is so uncommon that every single specialist we have seen has had both a differing opinion than the specialist before them.
He isn't walking because he has Hypotonia. He literally just started crawling and wasn't able to hold his own bottle until he was 9 months old because his muscle tone was so low. It's not because he is lazy or because I haven't tried. He has foot braces and Physical Therapy six times a month for a reason and it is helping immensely. He has come so far in just four months time with the help of Early Access.
He grinds his teeth because he has sensory issues and he is getting some sort of feedback from it. What it is we do not know but making rude comments about it isn't going to get him to stop. Yes, it makes my skin crawl too but there is nothing that I can do about it. He also likes to scratch things, has no fear, gags on rubber, won't touch/eat things with particular textures and he absolutely will not eat or drink anything cold and acts like it is torturous. Guess what? I can't do anything about that either other than help him try to get over those things little by little. I don't know why he is that way... he just is. Hearing people say negative things about him because he does those things hurts my heart deeply.
I guess I just needed to put this into the world:
Please remember to think before you speak. What you say to parents about their children can be hurtful and taken the wrong way with even the best intentions. Try to put yourself the other person's shoes before making commentary on someone else's child's behaviors, especially so when that child has Special Needs.
Just a few months ago we were told by an Orthopaedic Surgeon that my son had nerve damage from his traumatic birth (ahem - hospital negligence) and that there was nothing that I could do about it. "You can do Physical Therapy until you're blue in the face and it won't do a thing." is what he said to me after spending less than 5 minutes with my son.
All I have to say to him is YOU WERE WRONG! NANA NANA BOO BOO! STICK YOUR HEAD IN DOO DOO! Clearly, that is my mom version... as my real version wouldn't be pleasant at all to read!
<------ BUT LOOK! He is able to pull himself up! That is such an amazing feat and one that I thought wouldn't happen for quite a while longer! Our 16-year-old cat isn't as thrilled about it as we are... but it's so awesome!
It makes me feel like a proud mama that if you really work at something... big changes take place. It makes me proud that I didn't listen to some overpaid jerk who made $750+ in the literal 300 seconds he spent with us. It makes me wonder how many people do listen and do give up when the "professionals" tell them such things?! This just means that our little man is getting stronger and he'll be walking before we know it!
Abram is officially getting Physical Therapy and Occupational Therapy in our home as well as privately at Child Serve and will also be staring Speech Therapy this month as well! I'm excited to add that to our weekly schedule and list of things to kick-ass in!
Also.. Abram's Father and I are GETTING MARRIED! We are having a private ceremony in NE Iowa, where it will be peak leaf season! It is going to take place on a cliff overlooking the river and the beautiful bluffs filled with fall colors. I cannot wait and Saturday cannot come soon enough! Then we'll be staying in a beautiful Bed and Breakfast owned by a family member in a tiny town on the Mississippi. It's a fabulous Victorian Home that we will have to ourselves for THREE DAYS!!! THE WHOLE PLACE! Wooooo! We are looking forward to it! So the next time that I write, I will be a married woman.
Then - in even bigger news..... Abram is getting into the Univeristy of Iowa's Children's Speciality Clinic to meet with a Neurosurgeon (who also happens to be the Professor of Neurosurgery there) AND a Neurologist (the Assistant Professor of Neurology) on Wednesday! I am looking forward to getting a second opinion from two men who are specialists in their fields and both of whom have been voted Best of 2013 Doctors.
So that is a damn good start to next week.
Until then... take care of yourselves..
Well, it is officially October. Summer came and went in a flash filled with dozens and dozens of appointments, doctors, therapists, specialists, surgeons of several varities as well as a Neurologist and a brain surgeon.Yet, here I sit with more questions than answers. We still have not been informed of the results of our first EEG and yet I was informed that they are trying to schedule a second 24 hour EEG with Video (despite my numerous phone calls).
During our wait, I connected with Dr. Shahinian of the Skull Base Institute of Los Angeles again. We had a phone conference to once again discuss Abram's case. He already had a disc of Abram's first MRI so I emailed him a large list of questions/concerns along with his most recent high-contrast MRI image of the cyst. Plus, I made a page for just our Neuros/Doctors to see on this website with videos of Abram's seizure-like episodes as well as a intensive list of past medical history and current symptoms/behaviors, etc.
Dr. Shahinian told me that he felt like the videos that I shared with him are not seizures at all instead felt that they were vision disturbances caused by the cyst. Sadly, there is nothing that we can do about that at all until we are able to get the cyst out of his head. Dr. Shahinian also felt that Abram's sleep issues also have a lot to do with the cyst, due to the fact that it is on his Pineal Gland and that gland in particular is responsible for our circadian rhythms and sleep patterns. Unfortunately, there was not much more advice he could offer me at that point and suggested supplementing Abram with some Melatonin to help him sleep at night with the hopes that more sleep would curb the fussiness and agitated states that he has regularly (ahem! seemingly non-stop!). So, again I am left feeling torn. Happy to hear that a specialist in this issue feels that Abram is *not* having seizures and distraught at the fact that I can do nothing to help him be more comfortable and at ease. The Doctor even told me that he believes that this cyst WILL need to be removed but that he is not going to jump to do something invasive at this point. It seems so surreal having a child with such an issue. The fact that something is growing in his brain and there's nothing I can do about it until it causes Hydrocephalus just seems illogical. However, so does putting my child through the most dangerous brain surgery at only one year old.
It's just not fair.
So, in addition to seeking the advice of Dr. Shahinian, I also showed Abram's new Pediatrician the videos of the seizure-like episodes and he felt that they were definitely something to be concerned about. After discussing our son's issues with his insurance company we were hoping to be able to go out-of-state to a Children's Specialty Hospital but we are not allowed to do so until we've run the gamut of the State's University Hospital in Iowa City. Luckily, I found a great Neurosurgeon there and was able to get our Pediatrician to get us a referral there for a second opinion. I'm not sure what it is that I am looking for or what answer I am expecting to get but I just feel like my child is suffering at the hands of time and no one but me seems to think that it's time-sensitive issue. It's been nearly a month since I called our local Neurologist office to tell them of his episodes and I haven't heard a peep and it is beyond frustrating. I get and understand that they have priorities and other patients but it seems a little careless that no one can even call me back to explain anything or tell me that my concerns aren't justified if they aren't. A call from the nurse would suffice.
I guess I just am feeling overwhelmed and frustrated and a little beaten down. I'm frustrated that we spent an entire summer going to appointment after appointment to not have any answers and meanwhile my son is suffering and unhappy and there isn't one thing I can do to make him feel better other than to distract him from his own discomfort for a little while with a toy or a warm bath.
It's really hard not to get angry.
Hi! I'm Erin. I am a single mom, tireless advocate for UBE2a Deficiency Syndrome and a fierce proponent for medical cannabis.