Sorry folks, it's been a while since my last update. The reality is, things have been crazy and hard and amazing and good all at the same time. I try my best to keep my posts positive but I also feel that it is important to share the sad, the heartache and the never ending worry because that my friends, is reality. My little boy has taught me so much more about this life we live and what it takes to live it at its fullest. He can smile and take reprieve even in the worst of moments to giggle and remind me that things are going to be okay. Life is good... even when there are tiny little heart breaks along the way. He proved this once again this past Monday as we were rushing him to the ER via his First Ambulance ride. In the midst of the crazy and screaming from being strapped down this little dude stops in the middle of it to smile and revel in the fact that he is IN the thing whose sirens make him stop and go "ooooOOOooo". Even the sweet EMT laughed but really, kid? Abram was admitted in the Children's Hospital Monday night after he had what we can only assume was a seizure. He's already been having the staring spells/absence seizures for over a year now but we'b been unable to catch them on the Sleep Deprived EEG as well as a three-day-long Video EEG he had last December, in which they caught seizure activity but not enough to warrant medication. This time around we were released from the hospital less than 48 hours later because he'd had no other episodes. Luckily a friend of mine suggested an Ambulatory EEG and our Neurologist agreed that would be for the best interest for Abram as well, particularly because of the time of year and amount of yuck that is going around. (I almost died when they came and asked if I had any Ebola-like symptoms!) Yesterday, Mr. Abe had business as usual. I think he was so excited to be out of the hospital and going to Therapy was like a piece of cake! His dad even got to attend to see him eat eggs and actually touch pudding for the first time ever without a meltdown at Speech. He did great with his Occupational Therapist even though she was not his regular OT and then he kicked butt at Physical Therapy too and was walking back and forth WITHOUT his walker for her multiple times! However, his excitement waned when he realized he had to go see his Orthotist and start wearing SMOs on his feet again. His ankles are really rolling in and his feet are pointing out (it's a Hypotonia thing) so he's back in SMOs and some sweet new kicks that I wish came in my size. Alas, I don't think he likes them as much because the 1" rise that allows for a deeper shoe makes him really stumble and hit his heels together. I'm hoping that he'll get used to them or we'll be needing new shoes again. He grew like a weed this summer and went up an entire shoe size! Not to mention, he went from not being able to see out our front door at all to being able to stand nearly a head above it! He's still small for his age but damn it, he's growing! On Monday, we go back to the Hospital to put on the EEG probes. That is the worst part of it! Especially since Abram has some major sensory issues and his biggest triggers are smells and having his head touched. So, he ended up tied down to a board and swaddled but he still manages to pry himself loose. He's so strong when he's made I find it hard to keep him pinned down and I HATE having to do that to him. It makes me feel so terrible even when I know it's for the greater good. Just seeing your baby suffer in general is the worst thing ever. Luckily, I have met some amazing people thanks to Abram. He has introduced me to a completely different world and he has helped me learn to live in the moment and to enjoy the wonder of all the little things. Like giggles in Ambulances. 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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