I have been unable to update this blog in some time. A lot has happened in my family's life since my last post. In November my son was diagnosed with a form of Epilepsy and was put onto anti seizure meds in December. That adjustment in itself has been a roller coaster.
We also moved into a new home, in a new town about an hour away with my Mom. We now live in a multi-generational home and it has been such a great burden off our backs to have some help! Abe however continues to struggle. The first month on his meds seems like a godsend but now just 90 days later we are back to no sleeping, absence seizures and behavioral issues that suggest that something is really hurting or bothering him. We even had to page our Neurologist on a beautiful Saturday afternoon to ask for advice on how to best help him and him being the wonderful man he is - took our phone call when he was at home with his own family. So for now, we have upped his medicine to a stronger dose as the bloodwork revealed it was still sub therapeutic and he had some low areas on some tests as well including his ATP and his red blood cells. We go back next week to retest the blood. I'm praying that the blood work is just a matter of a nutrition issue with his food since he is such a picky eater due to his SPD but we are finally starting Feeding Therapy this week as well! I couldn't be more excited about that. It's been a very long wait to get in. At this very moment - we are waiting to hear back from our Neurologist as we finally had the ability to connect him with Dr. Shahinian at the Skull Base Institute in Los Angeles. Although he is unable to do Pediatric Surgeries at his current hospital, I feel that at this point he is the best point of reference for our Neurologist and for my son to get the care he needs since he has been following him since 2013. Truth be told - thinking of my son having to have brain surgery is absolutely terrifying and I would love for that to be a choice that he makes for himself when the time comes. I am unsure if that is going to be an option for him at all but our Neurologist feels that we NEED A PLAN in case something emergent arose and we needed help. A few other options have opened up for second opinions but right now - he has so much going on the mere thought of starting over with a new Neurosurgeon is overwhelming but I do know a few moms submitting their child's files to Barrow Neurological Institute so I'm excited to see what assistance they may be to help the children and toddlers suffering from these lesions. Abram just woke up from his not-napping at all really... so I have to run... but wanted to update what was going on. :) It has officially been two years since my son came into the world. It blows my mind how fast the years went yet how long the days have felt this entire time. Abram has come so far since his last birthday. Last July he was unable to sit, hold his own bottle or bear any weight on his legs at all. As of his second birthday, he can walk with the assistance of a walker, hold his own sippy cup and loves to cruise around the house via the walls and furniture. The older he gets, the further behind he gets developmentally, so we are still going strong with therapies and he is now starting speech therapy as well.
It is hard to realize that your child will have to work so much harder for all the things other parents take for granted. This doesn't mean that I don't want to celebrate in the milestones of my friend's children because I DO. I always am in awe and excited for the kiddos who were born much later than Abe who are already walkin' and talkin'. I just remind myself that I got lucky because I got to have my little baby be a baby a little while longer than everyone else. (Although, the damaged ligaments in my wrists tell my body otherwise: carrying a 26 pound toddler everywhere is hard work and not easy on the bones. "Getting old is the pits!" my Grandpa used to say. Now I get it.) As most people do, I have been doing a lot of reflecting over the last two years. Abram's Birthday will probably always bring up a host of emotions. I can only hope that someday the trauma of his birth and all that ensued afterward won't sting as much. I often still wonder if the events of his birth and the fallacies of the Hospital in the days following his entry into the world are the cause of his issues but I can't allow myself to linger in those thoughts for long. I will always grieve not remembering holding him for the first time because I was so drugged up after an emergency C-Section that went awry. I will always have the guilt of "what-if" the nurses had attended to his oxygen levels sooner. I will always wonder deep down inside if there was something that I could have done to prevent these issues my son and our lives have had to endure. Not many people have to endure that kind of grief. It is a deep, hollow and echoing grief that sneaks up and slaps you across the face with it's utter bleakness. It is a gut wrenching sadness having a child who can't tell you what hurts because they are unable to speak. It is a never ending heartache not being able to do the one thing a Mama is supposed to do for her child..... the ability to make things better. To not know what is hurting him or what he needs is horrific. To NOT KNOW the name of the thing that has taken over your whole life hurts so bad that sometimes it makes my throat close up in order to stop the tears from flowing. (Like right now as I am writing this.) When people ask what is "wrong" with my son, it. Is difficult to explain because it is not just one thing that affects him. Each little diagnoses that my son has includes a huge list of symptoms that affect his daily life in numerous ways and it is impossible for anyone who isn't living it to even get. That is not to say that other mamas don't have it rough or have a bad day but I think it's hard for people to fathom just what we go through on a daily basis. Unless you've sat on the other side of a two-way mirror to watch your child scream-cry for over a year in order to do something as simple as bearing weight on his legs... you have no idea. Unless you have a child with serious sensory issues there is no way you can get it how much it impacts my son's everything from clothes and eating to playing, socializing and playing. Unless your child has Hypotonia you have no idea how long it takes for my kiddo to reach a milestone. Unless your child has a mass in their brain- there is no way you can get it. (Just how there is no way I can get how hard it is to have an even more medically fragile child. Until you've lived it - you just cannot know.) So, when I say "You are so lucky" to parents of typical children - I mean it. Just like I am so lucky that Abram doesn't have even worse symptoms or diagnoses but I always speak with those parents enduring more than I can imagine - I always speak to them with integrity and respect. So please, if you know someone going through something similar just be kind. Don't make offers to help - Do something. Say something. Be there. I see this a lot in other blogs as well so I know I am not alone in this feeling. Send a card. Send a text. Leave a book for them to read on their doorstep or a silly toy. These are things my friends have done for me. You have no idea how much it cheers someone up to find a dinosaur bath toy, an old silver bowl(who did that btw?) or a Mac Tonight wind-up can do for the soul. NEVER tell a parent with a special needs kid that you have it just as hard if you have a healthy child. I have friends with both typical and special-needs kiddos and they echo this sentiment as well. Parenthood is hard enough for everyone. However, going through a non-stop health crisis since the day your child is born is nothing to scoff at or belittle. Hey Everyone! As usual, a lot to report since my last entry. Abram is finally pulling up to stand and "cruising" along furniture! It was such a huge deal to us and it made me cry to see how proud he was to be doing that!! The cat however, seems a bit disgusted that he's got a broader reach! His Physical Therapist also got him to walk across our (yes, tiny) living room but the fact that she got him to 1) touch the rubbery handles and 2) "walk" using his posture trainer (picture a backward adult/elderly walker) in shiny gold! He screamed the entire time but he did it with the help Physical Therapy twice a week since last summer! I'd like to honestly have him "walk" into that Orthopaedic Surgeon's office and have him kick the guy in the shins for telling us that we could do PT until we were blue in the face and it wouldn't do a thing! We showed him! Go, Abe, Go!! I'd also like to send a HUGE THANK YOU to the Rock Island District of the Army Corps of Engineers - where my father retired from and whose former co-workers were kind enough to send us a great donation that enabled us to pay for Abram's new glasses (coming soon!) and new shoes! Thank you so much for your kindness and generosity and for thinking of my son! It was so kind of you! I'd also like to say thank you to the people who sent my family kind words after my Grandfather's passing. Lyle Fluckey was a great man and he will be missed by many. I'm just so glad that I got to give him a proper goodbye and he got to see Abram stand before he left this world! Such a great honor to have the chance to tell someone you love them one last time! The Opthamalogist that we switched to turned out to be a great decision. Abram's old glasses had a prescription that was incorrect (too strong) and they check him and he does not have FEVR, which was a relief. His right eye is turning in but they feel that these glasses will help correct it and they gave us drops to put into his eyes so that they dilate enough to blur his vision so that he'll WANT to wear his glasses. I'm hoping that method works! With his Sensory issues, he tends to be very head/face sensitive and can't stand anything on his head! Drops however, are a much better suggestion that the suggestion that we got from our old Doctor who told us to duct tape magazines around his arms to restrict his movement! Um, no!!! In addition - Abram's soft spot still has not closed up and is considered to be an "abnormal fontanelle" so on the recommendation of our PT we are going to see a cranio facial doctor next week to see if they can give us any suggestions as to why it isn't closed, if it ever will close and to get a second opinion as to whether or not putting a helmet on him to protect him would be a good idea as suggested by our Neurologist. I think that about sums that stuff up!! Lots of appointments coming up/waiting to get scheduled and as per usual, I will update here when I can! Thanks for reading and thanks for caring. We love you! I had written a blog entry about Abram's Diagnosis that we received on New Year's Eve. I had made it my mission to find out what 'it' was that was affecting my son's development by the end of 2013. We'd been fighting for an answer since the day he was born in the summer of 2012 and I was not expecting the flood of emotions that I would feel after getting a diagnosis that involves a rare chromosomal disorder due to a micro deletion of Chromosome Seven; labeled as 7q31.31.
This diagnosis explains many of Abram's other diagnosed issues such as global developmental delay, his hypotonia as well as quite a bit of his behavior issues but unfortunately the Macrocephaly and the Cystic Lesion in his brain are unrelated. Alas, we are doing all that we can do to monitor that situation but I must admit that as I was reorganizing Abe's medical records yesterday, my gut dropped to see pineocytoma there in black in white under what we discussed with his Neurosurgeon in November. I think I've been in a bit of a shock. I read and re-read the pamphlet from Unique about the commonalities of diagnoses, symptoms, etc and it was relieving to read quotes from parents who have children with a similar diagnosis. A lot of what seemed unanswerable to most of our doctors was explained, finally. I was prepared to get not so good news and even though these issues of Abe's are life-long problems, it was a big burden off my heart to know officially that this was indeed just how my son was made and not caused by his traumatizing birth. There was nothing I could have done to prevent his disorder and that alone was worth the struggles and fight we had to get here! It hurts deep to know that the things that make your son hurt and struggle cannot be 'fixed' or 'grown out of'. It is world crushing news. It is hard and it hurts and I have days where I felt like I was ready to be okay with it and other days where I wanted to feel sorry for myself, my family and my son. Last Monday, I talked about my feelings with my favorite AEA gal and she made me realize that its okay to grieve, that it IS painful and that in order to move on, I needed to grieve that loss. It was then that I realized I hadn't let myself cry and that my husband and I hadn't even really talked about it. It hurt too bad. Friday we finally talked about everything. l had a good cry and I woke up in a different place and am trying hard to stay there. Abram is a lot more than a long list of symptoms and diagnoses. He is a wonderful, brilliant little boy whose smile lights up the room. He is clever, funny and spontaneous and has already taught me a great deal about the importance of living in the now and the value of patience and persistence. He has come a long way in the last six months and I can't wait to see how far he goes with his therapies in 2014. I am thankful for my little boy and all the amazing people he has brought into it. Motherhood has been a crazy ride so far and I wouldn't change any of it for the world. Hello, Everyone. Today we went and got yet another opinion from our local NeuroSurgeon. He was a very nice man and I cannot complain about him or his bedside manner. He was very kind and concerned but unfortunately he did not have anything new for us to learn. However, at least there is finally some consistency amongst the doctors that I do trust and he denied that there was "fluid all over his brain" like the other Neurosurgeon noted. Luckily, I decided that in order to prevent myself from going absolutely insane I CANNOT concentrate on all of their differences in opinion. I can only focus on the similarities in opinion or continuing care and what will be the best option for our son. Right now the only thing we can do about Abram's cyst is to know the symptoms and signs of any worsening Neurological issues, to call 911 if said neurological issues happen and then to follow-up with another MRI in six months to check for growth. That is it. That is literally our only option. It is a hard pill to swallow but it is what it is and I can't let the weight of that bring me down. Sadly, this fight to get an answer about the lesion in his brain has veered our family off onto another path with what is now assumed to be a "genetic and chromosomal abnormality" in our son in addition to the cystic lesion of the pineal gland in his brain. The brain lesion and all of his "global" developmental delays are completely separate issues needing to be dealt with. It was difficult realizing that something else is causing the rest of his issues when I hoped I would be able to blame his condition on the brain lesion. To hear that your child has a "genetic or chromosomal abnormality" just brings fear to your heart, a million more questions about other defects and most importantly what my child's expected life span is. This realization is especially paintful because there is no "cure" for genetic abnormalities. The only thing the Doctors can do for our son is to offer him symptomatic treatment (which we have already been doing since he was 10 months old), preventative measures for heart defects, etc and to assist his father and I in finding a good support group where we'd be able to meet families going through a similar struggle. I often hear, "I don't know how you do it" as I am sure most parents do. Although for me, it means a little more than a kinder way of saying "your kid wore me out". In fact everyone who has been able to spend a significant time with my son on a bad day has told me that they don't understand how I am functioning and for me it just is a relief to hear that they get it. Obviously no one wants to be the parent with the child that screams non-stop and be the receiving end of all those judgemental people and parents out there but having the confirmation that something isn't right after having to fight so hard the last 16 months is a relief. I have no choice other than to hold back the tears and fight as fiercely as I can to ensure that my son gets the medical attention that he needs and believe me, I have fought. I do it because I am Abram's Mama and I made a committed and purposeful choice in bringing this little boy into the world. It is my job to make him feel better and NOT being able to do that has been the hardest thing I have ever been through and will continue to go through. I just want our son to be able to say that he is proud of us for doing our best and loving him as much as we could. I just want him to live and love life and be happy so hopefully we are finally on the route to more answers so we can help him accomplish all that he wants to and more. Two weeks ago we had our big Developmental Assessment at the CDD in Iowa City. My husband couldn't go with us, so my mom drove up the night before and went along with me since the appointment was right at 8:15 in the morning and from our house it's an almost two hour drive to get to the University Hospital! I didn't realize that there would be "campus traffic" at that time in the morning and got a little lost but hey... we found the place and they had free parking and we got there right in time, so I can't complain too much. We were admitted immediately and we were put in a huge room with lots of toys and space for Abram to crawl around in. We immediately met the Hospital's Social Worker (who tells you about the help you may qualify for and gives you information on how to go about getting it). Then we spent the next five hours talking to Occupational Therapists, Speech Therapists, Physical Therapists, Dieticians, Nurses, Audiologists and then finally the Developmental Specialist who performs a thorough exam and tells you what the professional opinion is and what to expect next. The Developmental Specialist told us that she believes our son has a Genetic Chromosomal Abnormality. She pointed out a variety of physical things our son has going on including his far set eyes, the shape of his eyes, his wide nose bridge, small chin (with tongue-tie), hypotonia, the creases in his hands (he has a single transverse palmer crease), his Macrocephaly (his soft spot is large/not closed on his forehead) and showed me that his feet are not in line with his ankles. Obviously it was not the best news to get because there is no cure for a genetic abnormality. The only thing you can do in these scenarios is to prevent and/or treat the symptoms that the syndrome causes. It was definitely hard news to hear but I was slightly relieved to hear the Doctor say that she knew something was wrong and there is likely a name for it. The only step we could take at that point was to start our journey into Genetics. Before we left that day, they took Abram's blood and are sending it off to do a Chromosomal Microarray which will test his chromosomes for certain markers and will which in turn will hopefully be able to tell us which Chromosome may have the genetic abnormality. I believe we will be waiting quite a while to get the results back from that but IF it comes back with something we will get into a Geneticist ASAP and won't have to wait until our appointment in February which is the only good thing in this scenario. I am certainly not happy that my son may have a genetic abnormality but I am going to relieved to be able to refer to it by name, help improve the things I can and work my hardest to prevent any issues that this syndrome may cause. The doctor warned me about possible heart defects and after reading up on many of the symptoms my son has vs the possible syndromes it could be, I have learned that many of these syndromes also come with shorter life spans.... but I cannot even bear to think about that right now at all. Even if that is true there is nothing I can do but what I am doing... and that just means being the best Mama I can be. With that, I have had a lot of people ask if this Chromosomal Abnormality has anything to do with his Cystic Lesion of the Pineal Gland and the answer is a resounding, NO. Unfortunately for us, these two issues are separate problems for our family to deal with. Ironically, our Neurologist called us back in (earlier than our expected appointment) due to the fact another toddler in the city (who has the same thing as Abe) became symptomatic (when the medical field keep telling us that these cysts rarely cause syndromes and that they are typically "slow growers".) Unfortunately, if they do become symptomatic the only solution is to have your child go through the most invasive brain surgery there is due to the fact that the Pineal Gland is located precisely in the middle on the underside of the brain! Ugh! Anyhow, I updated our Neurologist on all the information we received at the CDD and he agreed that Abram may have a syndrome and/or disease that needs to be dealt with in addition to the issues he has from the lesion on his pineal gland (sleep disturbances, possible seizures). He also informed us he that he has decided to refer us on to a local Pediatric NeuroSurgeon to get a second opinion, "just to make sure" to which I am relieved. After our experience with the last NeuroSurgeon I am looking forward to meeting a local NeuroSurgeon that came at the request of a Neurologist who sees that my son has some major issues and is trying his best to help our family! Luckily, we got in right away (this coming Thursday) and I am anxious and nervous to hear what this man will say. He will be the third NeuroSurgeon to look at his scans so I am hoping that the third time's the charm in getting a consistent answer. Please!? So, that's where we are! Genetic Testing and a Neurosurgery appointment, which is exactly where I wanted to be so that is good. With more appointments come more questions but I do finally feel like we are going in the right direction to getting our son the help he needs the most! Yay! This is a long over-due THANK YOU to the folks who helped organize and throw the Playdate for Abram Silent Art Auction, the amazing Leanne Kamberg (and crew!) who has a heart bigger than anyone I know (who dreamt up this awesome thing) and to all the folks at The Fremont who have been nothing but supportive throughout all my ventures! To be honest, I literally hadn't gone into a public place to see my friends since the night I closed my business in March of 2012! After Abram was born things just never seemed to calm down or slow down and with no family in town to help.... we just don't get out much! I was having a major anxiety attack after being a recluse for that long! However, immediately upon arriving I was greeted by friendly faces, huge hugs and tons of kind words. I felt better and uplifted and brave enough to walk inside and see what was happening. The minute I step in the door, I see Stella and she whispers in my ear that she'd already raised over $700 by allowing the patrons of The Fremont to take swipes at her head with the clippers for donations!!! This beautiful woman and kind individual literally met me at that very moment. She didn't know me or my son but she wanted to HELP and she went BALD for it! It was such a touching and endearing thing to do and I will NEVER ever forget her. It took me a good hour just to make it past the front of the venue and into the spot where the Silent Art Auction was happening and where Leanne was presiding. I was overwhelmed by just how many amazing things people had donated! Old friends, strangers and even out-of-state people sent stuff in to help raise money for our son's medical expenses! All of it was amazing from original paintings (including Herman Munster) and sculptures to unique clothes, dishes, handmade dolls and beautiful handmade jewelry. I only made it half-way around the room before I was bawling and collapsed into Leanne's shoulder bawling as Jen Allen was singing. It was just so overwhelming.. having that feeling of that much love coming from so many people who care about what happens to my family and my son without even knowing me... it just took my breath away. I had to finally excuse myself and go outside to get a hold of myself! On top of all of those great things, there were also bands who donated their time to entertain during the event and our good friend Andrew cooked up some amazing food and served it up all night long to all the hungry patrons to get even more donations for Abram! We are beyond lucky to have such kind friends in our lives! To all the phenomenal people, artists, musicians, hand crafters and everyone else who came out to support us, THANK YOU SO MUCH! Abram's scrapbook will have a special section dedicated to that night and what our friends did for us! It was a great night and everyone involved should be proud! They raised over $2,700 that night and when Leanne came by to give us the last of the donations, she informed us that someone had bid on, won and gifted us a great handmade quilt! It turns out, it was the Mama of the woman who shaved her head for Abe! We are so grateful and lucky to know what true friendship and what COMMUNITY is truly about. So if you are reading this - that means YOU! Thank you from the bottom of my heart. To Leanne, Michelle, Dan, Andrew, Meagan Tron, Stephanie O, Brooke... thank you so much for making that happen! Love you guys. 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. 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. I'm not sure to start as I feel like every single time that I have posted lately I have just been a sad Mama. Since the day Abram was born he has been fighting and he is one tough little boy but I am hoping and praying for a day when he can have a full 24 hours of feeling good. A week or a month would be even better but for now I would settle for an entire day of happiness for this little boy of mine. Abram has been having a lot of sleep issues lately. It seems like he has reverted back to an almost newborn-style schedule and wakes every night anywhere from three times to a half-dozen or more. However, his wakefulness involves a lot of screaming and sets my heart pumping full of adrenaline because he scares me out of my own sleep so badly. This poor kid just doesn't seem to be able to catch a break. With every month that has gone by since the day he came into this world it seems like another issue comes to light. It seems with the more questions we have, the less answers we get and the more hopeless and lost I feel. I knew motherhood would be hard. I knew it wouldn't be all sunshine and lollipops and I am absolutely aware that there are probably a lot of folks reading this who have it a lot worse than I do and for that - I feel incredibly selfish for even saying that right now I just feel lost, helpless and a little hopeless even. Most recently, Abram has started to have strange episodes. The first time we were just playing and he just screamed out, his entire body went limp and he flopped into his Boppy limply. His eyes were open but he wasn't there and he was not responsive and then.... just like that he was back up and playing like nothing happened. The second time I had just put him down for a nap and within 15-20 minutes he was screaming bloody murder. I ran into his room to find him face-down in his crib screaming and screaming. I picked him up and ran into the living room so I could get a better look at him and find where he was hurt. His entire body was limp, his head was just dangling there (as was his legs and his arms) and even though he was still screaming... he was not responsive to me at all and again his eyes were open but no one was home. I took him to the doctor that day and we were scheduled for an EEG that we had to wait two weeks to get. In the meantime, he had a third episode that was similar to the one I just described but his muscles were rigid and tense. After the last two episodes, he just "came to" gasped for air and fell right asleep. I've been told that these episodes could be seizures or they could be night terrors. What the correct answer is - I do not know and again we have to wait and see. Abram just had his EEG this week. I think the worst part of it was sleep depriving him, which we had to do in order to avoid sedation again. So we had to put him to bed two hours late, wake him two hours early and not allow for him to have any naps. I was assured that the EEG itself was not painful but Abram was not a fan of being strapped down to a board and having a sweet nurse draw on his head and attach the sensors. His head was then wrapped like a mummy and I was able to crawl into bed with him and cuddle him while he was supposed to be sleeping. Again, he had several wakeful issues during his EEG and at one point just sat straight up in the middle of it. It was a short EEG - only 65 minutes and then we were allowed to go home. Now we are just waiting for the results on that and I am anxiously waiting for our Neurologist to get back from Vacation so I can talk to him about some of our most recent concerns. Luckily, I still have a couple of weeks left to ask the advice of Dr. Shahinian of the Skull Base Institute in LA, so we have a phone consultation with him again on Monday. I typed up an email with a lot of our newer concerns, questions and sent him a link to some video clips that I feel are important for him to see as Abram has developed a lot of strange quirks with his eyes on top of the strange scream/sleep episodes. In other news - we are still waiting to get in with a Geneticist to figure out the cause of Abram's Hypotonia and are now working with a Dietician to make sure he is getting all of the healthy fats and foods he needs to make sure he grows up all healthy and strong. That's all for now. There will be more news after we speak to Dr. Shahinian and after we get the results of the EEG. As always, thank you so much for the support. I have found an incredible network of people who suffer from Pineal Cysts as well as Parents of children with Special Needs and I must say that it is incredibly heart warming to have people who understand what we are going through and who take the time to send a kind word whether they are across town or on the other side of the globe. Our little family cannot thank you enough for your kind words. |
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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