To understand why Normal Doesn't Live Here I have to begin with a readers digest of events. You see the birth of my second child was not NORMAL at all. In fact, it was crazy! My contractions started about 2 weeks prior to his due date. Yup long time to be in small contractions. The doctors would check me often but send me home until they were closer together. That never happened. Instead I woke one morning to go to work (yes I was one of those who tried to work till the very last day) and while showering I noticed blood. You have to understand this actually didn't freak me out. I was a pretty laid back mom at that point as my daughter was 9 months old. So we went to the hospital and they hooked me up and started Piticon. My little guy didn't like that so much. In fact it caused his heart rate to drop. OK, scary moment for mom. Not as scary though as the thought of having a c-section knowing you will be going home with a baby and 9 month old while your husband is on duty with the AF in another state! Yes that is the thoughts that lingered in my head. So long story short, while trying to wheel me out for an emergency c-section I gave it another heave ho and pushed him out (a little crooked mind you).
Excitement should have been filling the air, and for the most part it did. We hadn't decided on a name yet as there were two that we were stuck on. So I asked the nurse (whose name happened to be Angel), "do you think this baby looks like CC... or CJ...? (I will keep our names as simple as possible through out). Her reply was "He looks like a CC"! With that we settled into our room and started our bonding. This is when I can say something in me knew that things weren't right. But it's a joyous time, I told myself, don't ruin it! It was kinda hard to do while watching him choke during feedings. When I told the nurses (not Angel as her shift had ended) that I thought something was wrong, they said "its Normal, he is just fine". You will start to see now why Normal Doesn't Live Here!
It all started with that one moment. That one word, Normal. What is normal? Is it Typical? Because we certainly don't have that here either! It wasn't until recently that I understood. My "ah ha" moment you can say. You see there are days like today where its just dreary and rainy and it forces me to sit down and not be so distracted. Where all the thoughts that run through my head daily start to slow down and I start to gather them. I talk myself through all the doctors appointments and school meetings. Then it clicks, Normal Doesn't Live Here! Really it doesn't! There is nothing Normal in my house or family. We don't live by the books or follow an exact protocol. We live life, our life!
Getting back to those first few days of life. We left the hospital with only a diagnosis of Jaundice and a scheduled check up back in 3 days. CC continued to choke on feedings, but, I put my trust in that nurse who said it was Normal and we moved on. When we went to that 3 day check up we learned upon examination that he had Spina Bifida Occulta. But, don't worry the doctor said, "there is no hairy tuff, this is sometimes Normal". God I would learn to hate that word! Once again I dismissed it with the trust in the doctor. Our lives continued on with a toddler and new baby. My husband would have to leave every other week for work leaving me to be "a single parent with a marriage license" (he hates when I say that)!
CC continued to struggle with food. He cried so often that my daughter called him "Ky". I thought it was because she couldn't say his name, but, then the day care provider (a grandma the kids called Nana J) said, "no honey its because he CRIES all the time". I didn't want to believe her and it took time until it made sense. More so once I started back to work and only was there for 2 months before she told me that it was too much for her. She couldn't give him the attention he needed with all the other children. I was upset at first but would come to see it was the best decision for everyone. During this time CC was diagnosed with another NORMAL problem of GERD and put on meds to help. It didn't do much. Even though it seemed he spit up everything I gave him, he still managed to gain weight. Once again the NORMAL word came into play.
I seemed to have left out 2 other discoveries. One his tear ducts were clogged big time. We would be monitored for the next 10 months then scheduled to have a procedure. There was also a discovery of a "double barrel shotgun". Extra skin we will say which caused him to pee at an angle! Sometimes this happens they said. He would be scheduled at 11 months for minor surgery.
To readers digest it more, here it goes: CC didn't like anyone but me holding him. He cried all the time and only slept in intervals. When we went out and used the stroller he had to be put in the back with the hood up or he would scream. If I used a front carrier he had to be facing out or he would scream! By 6 months he was not only still spitting up, but he was now spitting up blood. His diapers were mucusy and sometimes black. It was now that they decided to put him on a special formula! He had been sleeping in a baby swing next to our bed for 6 months as this was the only way to get more sleep. With the new formula we started to see a more cheerful content baby! The diagnosis Milk Soy Protein Intolerance (again this is sometimes Normal they said). I remember saying to my husband, "its only a food issue. We are lucky it isn't cancer or Autism". Boy would those words someday bite me in the butt! So with that I can forward on.
We are an active duty military family. My husbands postion had him away more then home. After CC's first surgery at 11 months (plastic surgery really - Tear duct procedure was cancelled since that cleared at 10 months) the kids and I moved to the East Coast while hubby served over seas for a year. We had our moments where everyone cried (the kids and I that is), but, we were living life. CC would start to have struggles again with food. As I tried to feed him solids and age appropriate his spitting up became more violent.
Just after his 1st birthday we made our first trip to the Children's Hospital ER. The reason, CC couldn't stop vomiting and he had loose bowels. His heart was racing as if it were gonna jump out his chest and he was a bit limp. I can tell you this calmly because I thought it was just a bug. His diagnosis was still not common and at the time very rare. We would meet a doctor who would become a life changer for us. Dr. S diagnosed CC with Food Protein Induced Enterocolitis Syndrome (FPIES for short). It seemed his body could not break down food proteins. ALL FOOD that is at that time. The kicker was that I found only 3 other parents online (we still all keep in touch to this day) whose children were going through similar problems. So the doctor wrote a letter we were to carry with us at all times and anytime he would react to a food we would try we had to give the letter to the hospital since no one knew what FPIES was at the time. Once again I would find myself saying to my husband "we can live with this, its a food challenge we can over come. At least its not Autism or a brain Tumor". So many stories to share about our journey with FPIES, which I will do at a later date.
We continued to live life with our new knowledge. At a check up with our pediatrician at the time it was suggested that we have CC evaluated by Early Intervention because he was a little delayed in talking. Ok he wasn't babbling or talking, but, he is a boy and well boys are sometimes slower at things! I thought nothing of it.
Well, CC began therapy at 14 months old. First with a speech therapist and a developmental therapist. Later we would increase that to OT and Behavioral. CC really gave them a run for their money as they tried everything to get him to speak. He would rather "static", that what we called it when he made his sound. Two times a week they would come and play. I always had to be close as CC would freak if I were any farther then 6 feet. His first word came at about 2yr when he said, "Up" to have his therapist lift him up with her feet! Then "down" was the next. It seemed to not take off though as we expected. But this is sometimes "normal" and when it clicks he will wake up talking! They were sort of right. We were and still are grateful for ALL that they did for him.
While we continued our therapies my husband returned home for a 2 week R&R before having to go back over seas to complete his deployment. At this point my kids had not seen him for 6 months. I sent him pictures daily of the kids, but, that was the extent. CC was not happy to have someone other then me help him in his highchair or car seat or anything else for that matter! I remember the first time we took the kids to the beach during the 2 week R&R. While our daughter DJ loved the sand and collecting sea shells, CC was freaking out just touching his feet to the sand. It felt like it took forever for him to take a few steps. Out of it I got the most incredible picture of my husband and both kids as they walked up from the water. By the way I didn't see anything wrong with how CC was even to this point. It was my husband who said one night before he left, "I think something is wrong". Nope everything is "Normal" I said!
So my husband returned to finish out his deployment while the kids and I continued life in NJ. We had our daily routine (this is a big deal in our house) with therapy and getting out of the house. As we fast forward a bit, we get to just about when CC was 2 1/2 years old. The behavior therapist was called in because it had been about a year that CC would awake from naps (and naps only) screaming and inconsolable. Was he just having bad dreams, or was he hurt? She even asked me (I would say us, but, my husband got another deployment and was away again - theres a trend) to video tape these times. I did even with him screaming in one arm or kicking in his bed. The therapist suggested that I take him to a Neurologist or Psychologist. She thought along with the screaming from naps, he was also terrified to go on any playground equipment. When we would go to Chick-Fil-A he would rather open and close the doors then play inside. When he sat in the swing, he would turn his head and press it back against the seat as to not see where he was going. So I thought it was for panic/anxiety. OK I can deal with that. I make the appointment and take him.
You can see where I am going with this I am sure. I am alone when I take him into see this doctor. While there she asks me to fill out a CARs form (this is basically where I would answer questions that would say he has Autism). WHAT? AUTISM? No you must be mistaken. He is just a little behind. How am I supposed to tell my husband who is in the desert that our only son has Autism. Surprisingly enough my husband was not shocked when he heard it and said he knew. So how come I was shocked? So I did what any mother would do, get a second opinion!! It was ironic, but, at the time we were being followed by a doctor with Neuropsychiatry in case he would need meds some day (not sure for what). She observed him over a course of 10 weeks. When I told her half way through that they (the other doctors) thought he had Autism, she said she would continue to observe and talk to me at the end of the time. Long story short (ok so I don't really have "short" stories on anything) it wasn't until they brought in my daughter for a play session that it stood out. She scheduled us back for an ADOS test and sure enough CC was confirmed to have an ASD as well as Expressive Language Disorder. Thus why he didn't talk! Nothing was exactly text book, "you had to read between the lines" she said.
I am the type of mom that cries for a minute then breathes and says, "ok what do we need to do? Now lets do it". So that phrase I used to say would bite me once! Yet, again, I felt that it could be worse, we can manage this with the help of therapist! We found our way of life and pressed through.
Lets now fast forward to 2010, CC is 4 1/2 years old and just finishing up his pre-k 4 class. Over the course of a few months we noticed that he speech which is already slurred due to a jaw slide was becoming more difficult to understand. He even went through a phase of stuttering. His eating became less and less and the OT and Speech therapist were constantly coming out to talk about their concerns. When I would call the pediatricians office I would get, this is "normal" sometimes for kids on the spectrum. Once again I dismissed the fears. Then one day the therapist called me back to see him. I walked in the room next to where he was seated and he didn't even budge to look at me. He was staring blankly at a wall absolutely zoned out. Then he came too as if nothing happened the last few minutes. Back to the doctors with concerns of this episode and falling out of chairs and loosing coordination and the list goes on. Our pediatrician said "ok lets run some tests. Sounds like Lymes but we should probably do an MRI since he hasn't had one yet, but, I am sure nothing will be on it". Those words my friends would come back and BITE him on the butt!!
Less then a week goes by and we get the results of the labs which were normal. Then the phone call that I will never forget. I remember every second including where I was when it came in. "I don't know how to tell you this". I held my breathe because my fear was that I always said at least it isn't Autism, then it was! At least it isn't cancer or a tumor! Was he going to tell me this? "We do see something on his MRI. He has Arnold Chiari Malformtation. His cerebellum is protruding through the back of his skull and is corked in his c-1 almost c-2 vertebra". I started to breath! Ok so its not a tumor! We can deal with this! His words continue on to say that he is still stumped because the "book" says this for symptoms and this or that.
OK so lets review! Every diagnosis that CC has ever gotten I would hear a doctor say, "Normally" or "Typically" followed by "medical books state". What I have learned is, there is nothing NORMAL or TYPICAL in my house or in my family! We live outside the box, so therefore, treat us outside the box!
For example, take what happened to CC recently. It was about 11pm at night and my husband and I were just about to turn the lights out for the night. I hear CC get up and call for me (he either calls out or comes to get me when he has to go to the bathroom). I get up and follow him in and I notice he is crying. Not sure why I ask "CC whats wrong", he responds "I don't know". History says that this is going to be one of those "spontaneous vomiting" nights (when there is no rhyme or reason for why he is throwing up). I called out to the husband to get the bucket (yes my kid sleeps with a vomit bucket under his bed as this happens more often then not). CC sits on my lap in the bathroom as I rub his back. He is still crying and just very agitated. All of a sudden I hear him say "I can't breathe". I tilt him back to look at his face and the picture will forever be engraved in my memory. His lips were open but teeth clenched down, arms pulled in tight. My instincts kick in and I laid him on his back and tilted up his head to clear his airway. I turned my head to look at his legs and noticed his toes were pointed out and legs extended. Then I turned back to look at him all while telling him to relax and breathe and thats when I noticed blood starting to come from his left nostril. By this time my husband had 911 on the phone and within 2 minutes my house was fill with paramedics and the police and Fire fighters. They checked his vitals and sent us to the ER by ambulance. We were later discharged with no answers as to what happened. Our new Neurologist (we have two now from the same practice) still are unable to determine wether a seizure or tonic posturing. Also why it happened or why he will sometimes wake up and not be able to walk because his leg hurts.
One of those new Neurologist put it to us this way, we know he has a Syndrome, we just don't know what it is as he is a "one of a kind"! Yes we have heard this before, right from the very first doctor who would help make a difference in CCs life! Dr. S, the allergist, has always said its called CC Syndrome! Once you understand that you start to think outside the book of medicine!
All of this leads us to what is about to happen here in our family! In the next few days we will make a journey to Ohio to a company that absolutely thinks outside the box! CC will meet his new partner Pace, a service dog trained by 4 Paws For Ability to help CC in his everyday not - normal and not - typical life! As we enter into this new journey of our lives, I will continue to blog.
Because maybe, just maybe, Normal Doesn't Live at your house either!
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