I am going to put a small disclaimer in this post. These are MY beliefs. This is MY journey. I am sharing my journey with all of you in hopes that you will gain a little more understanding on my son's conditions and how they affect our family. I also do this because many people have reached out to me because by sharing this crazy journey they have somehow found inspiration or hope to fight their battles. Some of these people are right here in this community and some of these people are complete strangers to me. So, I keep going. Sometimes it's pleasant and sometime's it's not. I don't expect everyone to agree with what I have to say. However, this is real life folks. I do not sugar coat a thing here. In order to understand my journey I believe I have to be 100% transparent.
That being said there are many, many theories on the ever controversial autism subject. I hate autism. I absolutely hate it. I hate the subject. I hate the condition. I hate that is affects so many people and no one understands it. Hell, I don't even completely understand it. It's exhausting, awful, terrible, and happens to affect someone I love with my entire heart.
Here are the facts.
Parker did not get autism because I was living in a polluted area or ate certain things when I was pregnant. Parker did not get autism because I had him vaccinated. Parker did not get autism from his dietary preferences. Parker did not get autism because we were bad parents.
The best doctors in the state feel fairly confident that Parker got autism because he suffered a traumatic brain injury at birth. Our sweet boy was born with a Grade IV Brain Bleed and acquired Hydrocephalus as a result. He has had more brain surgeries than birthdays. How can a child who's brain is so complex and healing not suffer some consequence?
He has been high risk for autism his entire life, a fact that we did not know until recently.
So, right when the storm settles and the rainbow starts to appear again something bad happens. Another storm was on our horizon and it would be earth shattering and just as devastating to hear as all of the other diagnosis we've heard. It never gets easier.
It. Never. Gets. Easier.
I have become numb in many ways. You sit me down and show me where he is developmentally and where he should be...doesn't phase me. You take his blood or start an IV...also doesn't phase me. I've heard his cries and screams because of medical procedures or just therapies he didn't want to do. I've become numb in many ways to all of that. I am so not numb with this. I feel every feel from the top of my head to the tips of my toes. This diagnosis phased me.
It shattered me.
Parker has been in various therapies since he was 6 months old. I have always known he wasn't like other kids, thank you Facebook. Of course, I knew why. He's been through so much in his short life. There was always something about him that felt off even with Hydrocephalus. Mom's have a gut instinct and my gut told me he had autism. I first felt it when he was 1 year old.
Parker had been followed by the university hospital after his NICU stint. It was there that they would monitor his development every so often and give us guidelines. Well, right around 16 months she saw some red flags and sent us to the center for disability and development. I knew. I just KNEW. I started bawling my eyes out.
"Caitlin, you cry. You can and should grieve for the child you thought you were going to have and the child you actually have. You can grieve for him and his future. It's okay," she said.
At that point I had not once grieved. I didn't think I should. It's not like he was dying, but my hopes (at that time) were dying. I mean it's awful to say, but they would never be a possibility. I know that now and I am still learning how to be okay with that. Parker's life was going to be so hard. Our lives were going to be so hard. It sucked and still does suck to be honest.
Well, at that appointment they told us he did not have autism! We were shocked! They said he was just delayed and had some sensory seeking behaviors, but it wasn't autism. I was relieved, but at the same time, super skeptical. Of course, I am not a doctor and sometimes I like to pretend I am, but we all know that I have a business degree. A business degree does not make me a medical doctor, now a black belt in Hydrocephalus maybe....
Fast forward several agonizing months later and we did get a doctor who like felt something was off. Parker's therapy never stopped in between appointments, but he just kept regressing right before our eyes. Was he being naughty? Did he not feel well? Something was definitely off.
So, in the same same clinic, same department, we met with a Neuro Psychologist and we were meeting him in hopes of some learning disability diagnosis. He started the test with Parker and I knew instantly he saw red flags. He went and got a different test booklet. Me in my ever stalking and research crazy personality recognized the booklet. It was a test administered to children Parker's age to help diagnose autism. Not going to lie, I had already given this test to Parker at home through the help of a website. He failed. I knew he was autistic going into this appointment. Tears instantly filled my eyes and my husband looked at me like I was losing my damn mind. I knew it! I knew this was coming.
He "diagnosed" Parker as "High Risk" for autism. The doctor said he was going to be conservative in his diagnosis because of the trauma he had been going through. He was just 2 years old at the time. Parker had brain surgery a couple months before his second birthday and then right after his second birthday what little vocabulary he had was gone. It seemed like he was constantly sick, constantly getting new teeth and the poor kid just wasn't himself. The doctor wanted to give him more time.
Parker has never been a talker, ever. He has never pointed, used gestures or anything. His hearing has always been perfect. Basically, what I am trying to say, Parker had a very low baseline to start with. It's not like the typical story you hear, "my son or daughter was singing and talking up a storm and then when they turned 2 it all stopped."
Parker never did those things so... I suppose it's a little easier on our hearts because we never had a child that we lost in those ways. I cannot imagine the pain and angst those parents must feel. My heart goes out to each and every one of them.
Some of his behaviors are rather odd. They are normal to us because we don't know it any different, but I am not blind to the stares that we get while we are out in public. Yes he has a shunt on top of his head. Yes he has several scars on his head. Now we have "stims" that people can't help but watch. He moves his fingers together. He moans and ticka tickas and eeee eeeees, all while jumping around on his tippy toes.
We LOVE his ticka tickas and EEEEEs! Those are happy Parker sounds. When I hear them on the baby monitor I can't wait to look over onto the screen and see those arms flapping away and legs swaying in the air with that huge grin on his face.
Unfortunately it seems like we are still wading through uncharted territory and most of our experiences are gut wrenching. The first time his autism really got to me was at my cousin's first birthday party. The party was in an open area, no music. There was a pretty good size group of people there for the festivities. My cousin had decorated the entire place and had balloons on each table. Parker freaked out. He was crying and my dad and stepmom had to take him outside to walk around because he could not handle it. They took him because I could not handle it. My poor cousin had to put all of the balloons in a closet, away from Parker so he could come back in. I was so embarrassed and ...confused. She was un-phased, God love her.
Why was this a trigger for him? Triggers. A new word to our Parker vocabulary. He has just a couple triggers, not many thank goodness. The kid is terrified of swings. He won't sit on them and he doesn't like it when we sit on them. Apparently a common problem for children on the spectrum. Another word for our vocabulary. Spectrum.
Honestly we are still in the flash card studying phase of understanding autism and it's definitions. We are not yet ready for the test!
Parker doesn't sleep at night. Parker doesn't use utensils to eat or take bites off of food. Parker doesn't color, paint, use scissors or string beads. Parker can't dress himself or take off his socks. Parker doesn't play with toys or "read" books like many kids his age do. Parker doesn't sign or gesture. Parker can't tell me that he's sick, cold or hungry. Parker doesn't talk.
I dream about the day where I could maybe hear what his voice would sound like. I dream about the day where he could tell me that he loves his momma.
It's not that he won't do these things...he just can't...yet. I have to remain optimistic that he will do some of those or all of those things. Who the heck knows, right? I know he wants to. I know he does. It frustrates him so much when we don't understand what he's trying to tell us. It's just wrapping your brain around the fact that he may not do those things. If only I had that crystal ball...I know he may not ever do some of those things. I have to accept that reality.
I constantly remind myself it could be so much worse and it sooo could be. There were moments when I wasn't sure that I would ever kiss his sweet face again. I have him in my arms every single day and I know parents who have lost their children would take "a Parker" and all of his issues over losing a piece of their heart. We are so blessed, so incredibly blessed to have him in our lives.
His smile melts my heart and his laugh is contagious. He loves to take my hands and place them on his face. He also rubs his face on my face and just laughs and laughs. Weird behavior yes, but it is totally his way of telling me that he loves me. I just know it! It's Parker and I love all of him, even the stuff I don't understand. He loves when his Daddy comes home from work and he gets a big ole bear hug, even if he doesn't hug back, we know he loves it. We will love him and give him the affection he needs and deserves. Have you ever seen him? He's adorable and how can you not kiss those cheeks! Gah!!!!
However, as all things in our lives I would be lying if I didn't say that jealousy plagues us. It rears it's ugly head at playgrounds, school drop offs and social media. It's so hard to not focus on the things he doesn't do when you are constantly reminded of the things he could be doing. It's heartbreaking. Parker is learning how to use playground equipment and it's so fun to watch him explore. He will, however, always prefer a pile of leaves, puddles, or rocks to a slide. It's just the reality of him.
Will he blow out his birthday candles this year? Will he open up presents at Christmas? Probably not. I know this, but that doesn't make it any easier. We give Parker the opportunity to do everything kids his age do. I would say 99% of the time he won't do it and it is like salt being poured into our existing wounds. As parents we weren't yet healed from his Hydrocephalus and then we got struck with this. It is safe to say I have been a woman on the edge of insanity quite a bit lately.
I wish people understood everything we have done and continue to do for Parker. We are trying so, so hard to make this life better for him. I acted like a complete psychopath in the principle's office already and he's in preschool. It was like I had three eye balls. Why doesn't this make sense to the general public? I don't understand. I have learned that it isn't that people don't care, it's just that they don't understand autism and Hydrocephalus and shunts, etc...and what we have/want to do on a daily basis. His condition is so much more complicated because he can't verbalize a single thing. It's dangerous and we have to be on top of everything all the time. He needs an advocate and as luck would have it he has a mom who is a nerd and never shows up without a power point presentation to support her arguments.
I am building up my arsenal of resources and with time I hope to dominate this world as much as I dominate the Hydro world. I've reconnected with a high school classmate who has been my sounding board and inspiration (she probably doesn't know that, but she inspires me every single day). Her advice is gospel to me! I've cried, cussed and been my worst person in messages to her. Best part, I don't even think she cares because she too has been down this unfortunate journey with her son.
I just can't believe that something like this had to happen to sweet Parker, again. I can't dwell on it, I know, but I am still grieving. Right now, typing this all out, I can barely breath because the reality of our situation continues to take my breath away. My biggest hurdle right now is finding resources in our small area to help the complex child he has turned out to be. I didn't think he was "that" complex. Surely they've seen kids like him before. WRONG. We've reached plateaus with almost every single therapist locally. It's exhausting. To think Parker lives in a world where we can't find anyone to understand or help him.
My husband and I try not to think about Parker's life when we aren't on this earth anymore. The idea of him being out there in this world without us scares me to death. I won't lie to you. It keeps me up at night. Who will take care of him? Who will buy him Doritos!? For the love of God what will he do if he doesn't have Doritos. It won't be pretty! I pray his sister has a big heart and will make sure her brother is loved, even if she can't be the primary, and I do not expect her to be, she can find a safe place for him. I just pray he has a safe place to lay his head every night. I can't even think about it right now because I will cry! Tears are forming right now. It is my biggest fear.
I don't know how to end this post. That must mean it's not ready for an ending. I have so much left to figure out and learn. We are at this time exhausted, but there is always light at the end of the tunnel. It's hard right now, because we just can't see that light. This tunnel is dark and the end is nowhere in sight. We will continue to fight for him and never ever give up. We will give him every single resource we can get our hands on to help him.
At the end of the day, Parker is so happy. He is such a happy child, without a care in the world. He knows he's safe and loved endlessly. Parker seems to have fun doing the simplest of things and we are very blessed for that. He enjoys jumping on his trampoline in front of the TV, playing in his sensory bin, watching the Little Mermaid 203038939203 times, and snuggling with us. He doesn't require material possessions, just love...and Doritos.
Tuesday, October 24, 2017
Friday, September 15, 2017
Isn't 1 ENOUGH?!?
This is quite strange. I started this blog post about a week before Parker had his seizure episode. I was juuuust about ready to post it, then that happened, which is obviously way better material. ;-)
Anyway, this is something we get asked a lot. In fact, I think many doctors are shocked that we even went for round 2, but we did.
We are in Parker's Neurosurgeon's office a couple weeks ago. "This is...your baby?"
"No we found her on the way in. We decided to just bring her to this appointment because it's fun to bring infants to Neurosurgeon's offices." EYE ROLL Not to mention she looks JUST like her brother. For the love of God.
He says, "And she is...okay"?
I say, "Ugh yes. she is okay..or maybe not because she appears to really be enjoying herself here."
So that being said....how do you know? HOW DO YOU KNOW? That is the question Casey and I had been asking ourselves for well over a year. The subject...try for another baby. When you have a child with special needs how do you know if it's okay to have another one? Is it risky? Hell yes it's risky. We would be playing Russian Roulette big time.
When we had Parker so many things went wrong during delivery. After some time we needed closure and the doctor who delivered Parker was all sorts of incapable of doing that. When Parker was about 1 1/2 years old a specialist at the university hospital reviewed our delivery file and took on our case to discuss what happened. Was it my fault? For so many months I took direct responsibility for what happened to Parker. I made the decision to have an induction. I didn't speak up to the doctor when I knew something was wrong in delivery. I was so naive it was ridiculous. If I could go back in time and slap myself silly I so would. As a mother I will forever carry the guilt of his condition no matter what anyone says.
At the end of the day, the doctor did say that she would have approached the delivery differently after some things went wrong. Ultimately, I had contracted an infection in my uterus and they believed that Parker got a fever and brain bleed from the infection. It's so hard to know and really we were hoping for some reassurance that we would someday have the opportunity to have another baby. There are some things no one will ever know and how Parker got a Grade IV brain bleed as a full term and seemingly healthy baby is unfortunately one of them. They did say that there was a 1 in 10,000 chance that something like this would happen again. It seems like a lot, but if you've walked a mile in my shoes it didn't quite feel like enough. I wanted like 1 in 1,000,000.
So we put having a baby on the back burner. The idea terrified both of us. What if we had another baby and the same thing happened? What if my uterus just hates babies and I get another infection? The "what if" scenarios are endless. It takes us back to the question, "how do you know"?
Parker does not communicate. It isn't like we could have this conversation with our 3 year old.
"Parker, are you ready to be a big brother"?
He'd reply, "OH YES Mom! That's all I've ever wanted!"
Yeah right...
Having another baby in our situation almost felt a little selfish as well. Were we just hoping for the experience everyone else seems to have? I mean, I'm not going to lie. I felt cheated. I did every single thing right when I was pregnant. I didn't even eat lunch meat for crying out loud. Delivering Parker and the aftermath was one of the worst experiences of my life. Just because I wanted what other people had didn't seem like enough of a reason to have a baby and we know better than anyone else that having a healthy baby is not a guarantee. There are zero guarantees.
Fast forward a year...we brought it up again. Here we had this beautiful house with extra bedrooms and no kids to fill them. Parker's condition had been the most stable it had EVER been for a long period of time ( I totally should have knocked on wood at this point in my story). My husband was bringing up the "baby talk" a lot. I was listening...scared out of my ever loving mind, but listening. The truth was, we were in a great place to have another baby and we aren't getting any younger here.
I am a deep thinker in the shower. Any others out there? It's like the most serene place to just think, pray and obviously sing. One day in early October I remember feeling lost. I was showering trying to relax and clear my head. I then started praying out of nowhere.
"God, I know you have a plan. I have no idea what that plan is and I'm trying so hard to be okay with that. All I ask of you is that if I am supposed to carry another child, bless me with good health and this baby with good health. I have a special son who needs me. If this is what is supposed to happen then I will trust your journey."
I have never in my entire life felt closer to Him. It was like I was having a one on one conversation with him and his ear was hearing just me at that moment. I felt at the most peace I'd felt in a long time.
Just a couple short weeks later I had a positive pregnancy test.
It's just crazy how things work out. One month of "trying" and boom. Pregnant. My husband says it best, "it was meant to be". My pregnancy was good. I was sick out of my mind for a majority of it, but it was good. We had one scare where our 20 week scan showed a cyst in the baby's ventricle.
We knows brains. Man do we ever know brains. This TERRIFIED ME. I lost so many hours of sleep over this. Tears were endless. I could not believe that this would happen to us, again. Was this some kind of mean test? If it was I failed because I was so angry. I mean, I had that conversation with God in the shower. My holy place. COME ON! Good news, we already had an incredibly skilled Neurosurgeon who could hopefully take care of the problem at birth. We could do this. We did it before and we could do this. At least this time we knew it was coming.
So, my OB knows I'm crazy. He knew what happened before and had so much empathy and care for me. I seriously cannot speak about him highly enough. Because of our situation he said he didn't want to take any chances with this pregnancy and he sent us to the university for a more detailed ultrasound and they found that it had dissolved. Whew. Casey then took me to Target to celebrate because, duh, Target.
Casey wanted to start painting the nursery and I wouldn't let him. I couldn't let myself get excited about this pregnancy. Even at 39 weeks I couldn't let my guard down for one moment. Something had to go wrong. It just had to. It's hard to describe, only that it was somewhat like "prepartum" depression. Well my due date came and no baby. God knows I wasn't going to induce this time. Come hell or high water I was going to deliver this baby with NO induction.
"Caitlin, if this baby isn't here by next week we will have to plan an induction," Dr. L said.
Commence tears.
So, he was basically giving me until the week of July 4th. In my mind I knew the baby wouldn't come because nothing is ever that easy, so I set myself up mentally to have the induction at 41 weeks.
On June 29, one day after my due date I went into labor at home, unknowingly I might add. At about 3AM I woke up with some pain and wasn't able to go back to sleep. I told my husband they were just Braxton Hicks and to go to work.
"Caitlin please use the contraction timer and call me if anything changes," he said.
I replied, "OK! OK! I will call you, but I am not making a fool of myself again this week."
Did I mention I went to the hospital the week before because they thought my water broke? I was basically peeing myself. OH the joy.
"Aww no baby! See you next week", the hospital volunteer shouted.
"Yep. Next week (yeah right)."
Well, exactly one week later I was in this "are these contractions or aren't they" predicament. I decided to start using my timer and thought to myself, "Ouch. These are pretty intense. I think that was a real one. Better mark it."
"Ouch."
"OOOOUUUUUCCCCHHHH!"
"Oh sweet Jesus!"
Contraction Timer Read: GO TO HOSPITAL
No joke. This was my life at like 5AM. Then all of the sudden on the baby monitor I hear Parker throwing up. In his bed.
I run in there, "Oh God. Oh my God, OUCH. Oh my God. Parker. Ouch. Parker! Ouch."
It was nothing short of a disaster and everything I feared in one moment. My biggest fear was that Parker would get sick or need surgery when I was in labor or in the hospital with the new baby. I swear this child had to make it about him to the very last minute.
"Uh, Casey I need you to come home, like now," I cried, literally crying.
He said, "I TOLD YOU I SHOULDN'T HAVE GONE! Why are you so stubborn!"
Fifteen minutes later he comes in guns a blazin, making me all sorts of nervous. He throws our bags in the car, Parker in the car and thankfully he remembered me. We dropped a sick Parker off at his grandparents (who answered the door all sorts of confused at dawn).
"Go have a baby," Casey's' stepfather yelled.
Yes that is the plan! I wasn't nervous about what could go wrong. For the first time I wanted that baby out, like now.
"OH MY GOD Casey slow down. Please don't get a ticket. Oh man, OUCH. I'm fine we have plenty of time my contractions are only like 7 minutes apart!"
3 minutes later...
"GAHHH OH MY...."! Use your imagination.
So, we made it. Casey took turns on two wheels.
I was officially in labor and as luck would have it, my OB was on call. He was there ALL DAY. To make things even better our favorite nurses were there too. As if that wasn't enough, our Pediatrician was on call too! I mean, come one!
Being a day late was fate!
There was a time right before delivery that I freaked out. I thought it was going to be this long drawn out process, you know, like the shit show I had with Parker. I started pushing and the nurse went and got the doctor. I panicked.
"I'm scared. I'm so scared," I cried.
She said, "Look at me! LOOK AT ME! You can do this!"
So, I looked at her and I pushed. I pushed and then the doctor said, "Okay Caitlin, this next push you are going to have a baby!"
I was in shock, "WHAT!"
I mean, why was I there? For the love of God I was there to have a baby. So with the help of an amazing team and my doctor's obsession with AstroGlide (no joke) our sweet little Paisley made her debut with zero complications and without much effort honestly.
After she was born I was in some sort of strange universe. She was here.
"What's her temperature? Is she okay?" I asked.
The pediatrician's shoes were under the curtain the entire time so he made his appearance and probably saw more of me than he wanted to. Turns out you don't care. He examined her and said she was perfect, I do recall he called her a brute because she is. She was 9 pounds 2 ounces of perfection.
Was this real life? Did I just have the best birth experience ever? The answer is yes. June 29 was hands down one of the BEST days of my entire life. We were able to give Parker a little sister who will no doubt run this house in no time. She is everything opposite of her brother: loud, demanding and obviously female.
When I was alone with her for the first time I prayed with her and thanked God for this precious experience and more importantly this beautiful baby girl. As a special needs parent it's hard to know "when" and the what if's will keep you up at night. It will be alright. Keep the faith and surround yourself with supportive people. If your baby is planned or a surprise - it's scary no matter what.
I have no idea how Parker and Paisley will get along. Right now, he's in his own little world and doesn't acknowledge her much. It is our hope that she will develop a relationship with her brother. She will teach him and guide him. Right now her cry pesters his senses and favorite TV shows. So they aren't friends just yet.
The fears from our past disrupt our hopes for the future. We find ourselves holding our breath until that baby screams, or the days or weeks pass and the baby continues to develop normally. I am STILL holding my breath for every appointment she has or every weird baby thing she does. We are real because we have to be. We've lived most parents' biggest nightmares and you know what we survived. That's who we've become and that's okay. We are survivors. I am so proud to be the woman I've become. I like her.
I mean come on, I had to face my fear head on when I went into labor. I was like 30 seconds into this whole second kid thing and my child with a serious medical condition was sick and turns out it was the beginning of something serious that would rear it's ugly head just a couple months later. Casey had to remind me while I was in labor that I needed to focus on the task at hand. I never thought it would be possible, but I did it. Guess what, Parker was fine. He was a little out of sorts, but he was fine. A couple weeks ago I had to focus on Parker and I worried endlessly about Paisley. Also, guess what, she was fine. I still have a lot of learning to do here, but I'm treading along.
I can't imagine what life would be like without our sweet Paisley. I can't let my experience with Parker affect my experience with her. I can't live as if every single day something bad will happen to her. I vowed to the Pediatrician I would not measure her head, take her temperature excessively and check WebMD (much). They are different children. She will upset us in ways Parker doesn't and probably in ways that he does, too. Who knows! It's hard, but you have to GO WITH THE FLOW and not cry over spilled milk, unless it's breast milk, then ya know go ahead and cry.
At the end of the day, if I would have let my fears run my life she wouldn't be here. My advice, keep the faith, stay informed and be an advocate for yourself. As always, it will all be okay. Just roll with it.
Anyway, this is something we get asked a lot. In fact, I think many doctors are shocked that we even went for round 2, but we did.
We are in Parker's Neurosurgeon's office a couple weeks ago. "This is...your baby?"
"No we found her on the way in. We decided to just bring her to this appointment because it's fun to bring infants to Neurosurgeon's offices." EYE ROLL Not to mention she looks JUST like her brother. For the love of God.
He says, "And she is...okay"?
I say, "Ugh yes. she is okay..or maybe not because she appears to really be enjoying herself here."
So that being said....how do you know? HOW DO YOU KNOW? That is the question Casey and I had been asking ourselves for well over a year. The subject...try for another baby. When you have a child with special needs how do you know if it's okay to have another one? Is it risky? Hell yes it's risky. We would be playing Russian Roulette big time.
When we had Parker so many things went wrong during delivery. After some time we needed closure and the doctor who delivered Parker was all sorts of incapable of doing that. When Parker was about 1 1/2 years old a specialist at the university hospital reviewed our delivery file and took on our case to discuss what happened. Was it my fault? For so many months I took direct responsibility for what happened to Parker. I made the decision to have an induction. I didn't speak up to the doctor when I knew something was wrong in delivery. I was so naive it was ridiculous. If I could go back in time and slap myself silly I so would. As a mother I will forever carry the guilt of his condition no matter what anyone says.
At the end of the day, the doctor did say that she would have approached the delivery differently after some things went wrong. Ultimately, I had contracted an infection in my uterus and they believed that Parker got a fever and brain bleed from the infection. It's so hard to know and really we were hoping for some reassurance that we would someday have the opportunity to have another baby. There are some things no one will ever know and how Parker got a Grade IV brain bleed as a full term and seemingly healthy baby is unfortunately one of them. They did say that there was a 1 in 10,000 chance that something like this would happen again. It seems like a lot, but if you've walked a mile in my shoes it didn't quite feel like enough. I wanted like 1 in 1,000,000.
So we put having a baby on the back burner. The idea terrified both of us. What if we had another baby and the same thing happened? What if my uterus just hates babies and I get another infection? The "what if" scenarios are endless. It takes us back to the question, "how do you know"?
Parker does not communicate. It isn't like we could have this conversation with our 3 year old.
"Parker, are you ready to be a big brother"?
He'd reply, "OH YES Mom! That's all I've ever wanted!"
Yeah right...
Having another baby in our situation almost felt a little selfish as well. Were we just hoping for the experience everyone else seems to have? I mean, I'm not going to lie. I felt cheated. I did every single thing right when I was pregnant. I didn't even eat lunch meat for crying out loud. Delivering Parker and the aftermath was one of the worst experiences of my life. Just because I wanted what other people had didn't seem like enough of a reason to have a baby and we know better than anyone else that having a healthy baby is not a guarantee. There are zero guarantees.
Fast forward a year...we brought it up again. Here we had this beautiful house with extra bedrooms and no kids to fill them. Parker's condition had been the most stable it had EVER been for a long period of time ( I totally should have knocked on wood at this point in my story). My husband was bringing up the "baby talk" a lot. I was listening...scared out of my ever loving mind, but listening. The truth was, we were in a great place to have another baby and we aren't getting any younger here.
I am a deep thinker in the shower. Any others out there? It's like the most serene place to just think, pray and obviously sing. One day in early October I remember feeling lost. I was showering trying to relax and clear my head. I then started praying out of nowhere.
"God, I know you have a plan. I have no idea what that plan is and I'm trying so hard to be okay with that. All I ask of you is that if I am supposed to carry another child, bless me with good health and this baby with good health. I have a special son who needs me. If this is what is supposed to happen then I will trust your journey."
I have never in my entire life felt closer to Him. It was like I was having a one on one conversation with him and his ear was hearing just me at that moment. I felt at the most peace I'd felt in a long time.
Just a couple short weeks later I had a positive pregnancy test.
It's just crazy how things work out. One month of "trying" and boom. Pregnant. My husband says it best, "it was meant to be". My pregnancy was good. I was sick out of my mind for a majority of it, but it was good. We had one scare where our 20 week scan showed a cyst in the baby's ventricle.
We knows brains. Man do we ever know brains. This TERRIFIED ME. I lost so many hours of sleep over this. Tears were endless. I could not believe that this would happen to us, again. Was this some kind of mean test? If it was I failed because I was so angry. I mean, I had that conversation with God in the shower. My holy place. COME ON! Good news, we already had an incredibly skilled Neurosurgeon who could hopefully take care of the problem at birth. We could do this. We did it before and we could do this. At least this time we knew it was coming.
So, my OB knows I'm crazy. He knew what happened before and had so much empathy and care for me. I seriously cannot speak about him highly enough. Because of our situation he said he didn't want to take any chances with this pregnancy and he sent us to the university for a more detailed ultrasound and they found that it had dissolved. Whew. Casey then took me to Target to celebrate because, duh, Target.
Casey wanted to start painting the nursery and I wouldn't let him. I couldn't let myself get excited about this pregnancy. Even at 39 weeks I couldn't let my guard down for one moment. Something had to go wrong. It just had to. It's hard to describe, only that it was somewhat like "prepartum" depression. Well my due date came and no baby. God knows I wasn't going to induce this time. Come hell or high water I was going to deliver this baby with NO induction.
"Caitlin, if this baby isn't here by next week we will have to plan an induction," Dr. L said.
Commence tears.
So, he was basically giving me until the week of July 4th. In my mind I knew the baby wouldn't come because nothing is ever that easy, so I set myself up mentally to have the induction at 41 weeks.
On June 29, one day after my due date I went into labor at home, unknowingly I might add. At about 3AM I woke up with some pain and wasn't able to go back to sleep. I told my husband they were just Braxton Hicks and to go to work.
"Caitlin please use the contraction timer and call me if anything changes," he said.
I replied, "OK! OK! I will call you, but I am not making a fool of myself again this week."
Did I mention I went to the hospital the week before because they thought my water broke? I was basically peeing myself. OH the joy.
"Aww no baby! See you next week", the hospital volunteer shouted.
"Yep. Next week (yeah right)."
Well, exactly one week later I was in this "are these contractions or aren't they" predicament. I decided to start using my timer and thought to myself, "Ouch. These are pretty intense. I think that was a real one. Better mark it."
"Ouch."
"OOOOUUUUUCCCCHHHH!"
"Oh sweet Jesus!"
Contraction Timer Read: GO TO HOSPITAL
No joke. This was my life at like 5AM. Then all of the sudden on the baby monitor I hear Parker throwing up. In his bed.
I run in there, "Oh God. Oh my God, OUCH. Oh my God. Parker. Ouch. Parker! Ouch."
It was nothing short of a disaster and everything I feared in one moment. My biggest fear was that Parker would get sick or need surgery when I was in labor or in the hospital with the new baby. I swear this child had to make it about him to the very last minute.
"Uh, Casey I need you to come home, like now," I cried, literally crying.
He said, "I TOLD YOU I SHOULDN'T HAVE GONE! Why are you so stubborn!"
Fifteen minutes later he comes in guns a blazin, making me all sorts of nervous. He throws our bags in the car, Parker in the car and thankfully he remembered me. We dropped a sick Parker off at his grandparents (who answered the door all sorts of confused at dawn).
"Go have a baby," Casey's' stepfather yelled.
Yes that is the plan! I wasn't nervous about what could go wrong. For the first time I wanted that baby out, like now.
"OH MY GOD Casey slow down. Please don't get a ticket. Oh man, OUCH. I'm fine we have plenty of time my contractions are only like 7 minutes apart!"
3 minutes later...
"GAHHH OH MY...."! Use your imagination.
So, we made it. Casey took turns on two wheels.
I was officially in labor and as luck would have it, my OB was on call. He was there ALL DAY. To make things even better our favorite nurses were there too. As if that wasn't enough, our Pediatrician was on call too! I mean, come one!
Being a day late was fate!
There was a time right before delivery that I freaked out. I thought it was going to be this long drawn out process, you know, like the shit show I had with Parker. I started pushing and the nurse went and got the doctor. I panicked.
"I'm scared. I'm so scared," I cried.
She said, "Look at me! LOOK AT ME! You can do this!"
So, I looked at her and I pushed. I pushed and then the doctor said, "Okay Caitlin, this next push you are going to have a baby!"
I was in shock, "WHAT!"
I mean, why was I there? For the love of God I was there to have a baby. So with the help of an amazing team and my doctor's obsession with AstroGlide (no joke) our sweet little Paisley made her debut with zero complications and without much effort honestly.
After she was born I was in some sort of strange universe. She was here.
"What's her temperature? Is she okay?" I asked.
The pediatrician's shoes were under the curtain the entire time so he made his appearance and probably saw more of me than he wanted to. Turns out you don't care. He examined her and said she was perfect, I do recall he called her a brute because she is. She was 9 pounds 2 ounces of perfection.
Was this real life? Did I just have the best birth experience ever? The answer is yes. June 29 was hands down one of the BEST days of my entire life. We were able to give Parker a little sister who will no doubt run this house in no time. She is everything opposite of her brother: loud, demanding and obviously female.
When I was alone with her for the first time I prayed with her and thanked God for this precious experience and more importantly this beautiful baby girl. As a special needs parent it's hard to know "when" and the what if's will keep you up at night. It will be alright. Keep the faith and surround yourself with supportive people. If your baby is planned or a surprise - it's scary no matter what.
I have no idea how Parker and Paisley will get along. Right now, he's in his own little world and doesn't acknowledge her much. It is our hope that she will develop a relationship with her brother. She will teach him and guide him. Right now her cry pesters his senses and favorite TV shows. So they aren't friends just yet.
The fears from our past disrupt our hopes for the future. We find ourselves holding our breath until that baby screams, or the days or weeks pass and the baby continues to develop normally. I am STILL holding my breath for every appointment she has or every weird baby thing she does. We are real because we have to be. We've lived most parents' biggest nightmares and you know what we survived. That's who we've become and that's okay. We are survivors. I am so proud to be the woman I've become. I like her.
I mean come on, I had to face my fear head on when I went into labor. I was like 30 seconds into this whole second kid thing and my child with a serious medical condition was sick and turns out it was the beginning of something serious that would rear it's ugly head just a couple months later. Casey had to remind me while I was in labor that I needed to focus on the task at hand. I never thought it would be possible, but I did it. Guess what, Parker was fine. He was a little out of sorts, but he was fine. A couple weeks ago I had to focus on Parker and I worried endlessly about Paisley. Also, guess what, she was fine. I still have a lot of learning to do here, but I'm treading along.
I can't imagine what life would be like without our sweet Paisley. I can't let my experience with Parker affect my experience with her. I can't live as if every single day something bad will happen to her. I vowed to the Pediatrician I would not measure her head, take her temperature excessively and check WebMD (much). They are different children. She will upset us in ways Parker doesn't and probably in ways that he does, too. Who knows! It's hard, but you have to GO WITH THE FLOW and not cry over spilled milk, unless it's breast milk, then ya know go ahead and cry.
At the end of the day, if I would have let my fears run my life she wouldn't be here. My advice, keep the faith, stay informed and be an advocate for yourself. As always, it will all be okay. Just roll with it.
Saturday, September 2, 2017
A New Bump in the Road...Actually More Like a Hill
Irony is never really lost on me. I tend to have more ironic moments in my life than the average Joe. Once I decided to update this blog I wrote this whole article on having a special needs child and deciding to have another child. You know, the risks and emotions that go along with it, etc.., etc... I saved the blog post and told myself I'd post it last week after I could proof read it. I will be honest. I write every single one of these posts with a little bit of wine in my system. Needless to say, going back to edit is crucial. We aren't talking grammar errors, we are talking utmost honesty. :-) Liquid courage can sometimes be damaging! Ha!
Those of you who know me personally know I am WAY more fun with a glass of wine in my system.
Anyway, last Sunday I was prepping for the busy week we were to have ahead of us. Parker had school and therapy, we had several appointments (one being my hair go figure), and I just like to be organized. I am still on maternity leave so I am really trying to get us on a schedule to work when I go back to work. Parker had his nighttime snack of crackers and milk before bed, as he always does. I tucked him and he reached up to give me a goodnight kiss, something new he has been doing with Casey and I. Let me tell you that little bit of affection he gives means the world to us.
At around 5AM Monday morning I was up feeding Paisley and I heard Parker dry heaving. This is not unusual for Parker. I immediately ran to his room and he wasn't in his bed. So, I run downstairs to see if he's in the living room and he is laying on the couch. Also, not unusual behavior since his sister has been born. He is a master at getting up early in the morning and raiding the pantry for Doritos. We have since put a lock on the pantry the stinker!
He continued to dry heave so I rushed him up to the bathroom. I remember thinking, "YES! Mom win! He didn't throw up on the couch!"
Parker had started school the week before so I figured he had probably caught the inevitable bug that was going around his preschool, because there has got to be something going around school always, right? I helped support him over the toilet and the poor guy just couldn't get anything out. Then he looked at me and I could see little sweat beads on his nose and forehead. This child NEVER sweats. It's actually a problem we have with him. Then he started coughing. Not like a deep cough, but a little tickle cough. I figured he had something in his throat or a tickle so I took him down to the kitchen to get a drink of water. When I stepped away from him he couldn't stand. His balance was off. So, I picked him up and away we went.
When I got to the kitchen I put him down and he was like a ping pong ball bouncing back and forth between the walls and cupboards. It was reminiscent of our college years - I will say that! Either Parker had just polished off a bottle of whiskey or there was something seriously wrong with him. I will go with there was something seriously wrong...
Immediately I called Casey. He had to go to work super early that morning so I was alone with both kids. Paisley was swinging away dozing off, quiet for the first time in her life, thank God. I tried calling Casey's cell phone countless times, each time leaving messages that were more and more frantic. Then I tried the office number twice. No one answered.
I was supporting Parker while he was standing and leaving Casey a voicemail.
"You need to call me NOW. Something is horribly wrong with Parker...Oh my God..."
At that moment, before I could finish my message Parker went limp at my side. I laid him on the kitchen floor and his eyes were wide open starring off in space. His tongue was clicking and his left fist was clenched super tight. He started turning a shade of gray...
COMMENCE PANIC.
"911 What is your emergency?"
I screamed, "My son! Oh my God my son! He's having an episode. He has Hydrocephalus. I don't think he's breathing. I can't see his chest moving."
"You don't think he's breathing? Do you know CPR? You are going to have to do CPR," she said.
I got down on the floor next too him looking for any sign, just any sign at all that his little body was breathing and I honestly could not find one. His little body kept tightening up and his color kept getting more and more gray. I put my face close to his and I could feel his body heat, but no air.
Just as I was about to start CPR an officer arrived. He came in and we are talking like minutes after the EMT's came. They walked in the door, two of them, looked at Parker and saw what I saw. After a couple more minutes he closed his eyes and took a breath. Whew. His color changed from gray/blue to white as a ghost. They whisked him away so quickly. Our neighbor saw the ambulance lights and ran over. She is an angel and stayed with Paisley so I could go be with Parker.
"Do you want me to stay with the baby?" she said.
I replied, "Baby? Oh my God I have a baby! Yes! Thank you!"
Throwing diapers on the couch and bottles on the counter I sprinted out of the house so fast. I had never really left my daughter, but boy did I decide to start the "cutting of the cord" process dramatically. For the love...
At this point we still could not get a hold of Casey and wouldn't you know it the phone charger that my phone was plugged into all night was broke and my phone was DEAD. Thank God the officer had my dad's phone number because he is also an officer in the area. My dad said he'd send reinforcements.
The drive over, though only a few blocks, was the worst drive ever. I didn't know if my son was alive. Honest to God I had no idea what happened to him. Did he have a seizure? Stroke? Cardiac arrest? It's the absolute worst feeling as a parent. I sprinted into the emergency room and the EMT greeted me. He told me Parker was still unconscious, but he was stable. The physician was pretty confident what we had witnessed was in fact a seizure and they needed to get Parker to the university hospital, stat. They couldn't fly helicopters that morning because of the weather so they were working on getting an ambulance.
I ran to my son and he laid there so peaceful and calm. Unlike the scene around him that's for sure. He was white as a ghost, still, but in comparison to his earlier shade I was glad to see it. I didn't see the whites of his eyes for over an hour and a half.
Sheer panic set in again because I realized I still hadn't been able to get a hold of Casey. What if they transported him and Casey had no idea what was going on? It was incredibly stressful. So, I called one of his coworkers. Thank goodness she saw the missed call and that prompted Casey to check his phone that was locked up. To say he was devastated is an understatement. I don't even know how long it took him to get to the hospital, but let's just say it's a good thing cops weren't patrolling his route that morning.
The ambulance finally arrived and I was able to ride with sweet Parker to the university hospital. He came to in the ambulance and the look on his face was priceless. He looked over at me like what the ...? Where am I?
That strong, brave boy did not cry ONE time in that ambulance. Not one! His oxygen was a little low when we took off, but after about an hour it got better. Parker appeared to be stable. Thank you Lord! Once we arrived at the hospital the staff immediately started the shunt checks.
X-Rays.
MRI.
Neuro Exam.
He passed all of them. His shunt was fine. That meant no brain surgery. So what the heck?
Parker has quite the extensive neurological medical history going on. You move past one hurdle and you kind of put it in the back of your brain, never revisiting the horrible memory. I suppose this was a crucial mistake because we later found out that his extensive neurological issues were causing the seizures. I didn't even think this was a possibility.
Parker has neonatal seizures at birth. They were stemming from damage on the front lobe of the left side of his brain. The area of the brain that regulates breathing. So at birth, his oxygen and heart rate dropped and that is exactly what happened this time. Turns out, he more than likely wasn't breathing the way he should have been. The Neurologist thought it was because the blood goes to support vital organs during a seizure and his Neurosurgeon is contributing it to the source of the seizure and comparison to his neonatal seizures. Parker has doctors who disagree? NO! <insert sarcasm>
He said to us, "I have a lab and I study the effects of these types of seizures. They can be fatal so you really have to stay on top of the medication and you may have to perform CPR to jump start him."
Talk about a punch to the gut. At the end of the day there is NO way to know for sure what type of seizure it was, but we have to prepare for the worst. Hell, he may never even have another one. Unfortunately both of the doctors did agree that this was more than likely not an isolated incident. This was a new reality for him, for us, for our family.
It just feels so unfair that we are always preparing for the worst. For three and a half years it's always been something. Our hearts and minds hurt right now. We've been here before, different circumstances of course, but still with our son and still with his darn brain. It feels like everything we've done the past couple years weren't good enough. We keep up with all of his appointments, therapies, etc. It felt like none of that mattered because we could not protect him or prevent this.
Parker had follow-up appointments/tests the Friday following his seizure. He had to endure the Neurosurgeon's office and an EEG. EEG's are not fun, for an adult, let alone a busy and CRANKY 3 year old. Did I mention his medication has a side effect of "moodiness". Well, it's legit. He is moody. The poor child cried as I had to pull the glue off of his head last night. I seriously gave him three baths, refilling the tub with clean, warm water, because he enjoys the water so much. Then you know what has to happen again? I have to go at his scalp and forehead again to try to get the glue off. Even though it's silly, you know the removing of glue, it's still hard to watch him go through pain again this week. IV's, blood draws, MRI's, X-Rays...it's just too much.
Parker should be starting school with none of these worries. Casey and I should be sleeping through the night (well as much as one can with a new baby) without worrying about our son not waking up in the morning. Instead we are praying, praying so hard, that this doesn't happen again and if it does, it doesn't take our sweet boy away from us permanently like it's apparently capable of doing.
This bump in the road is actually more like a hill in the road. I know we've been here before. We've had to learn about a new diagnosis and it's adjustments to life. That's exactly what this is. I will get there and wrap my brain around it. Right now I'm worried sick, angry and grieving over yet another diagnosis for our sweet boy. I sit and watch him in the video monitor breathing and moving. I count my blessings because as always the outcome could have been so much worse.
We will adjust and plan. We will update our CPR certifications. We will always remember his seizure medication. We will time his seizures. We will keep his appointments. We will accommodate.
We will do all of this because that's what we do in this house. Life has never been any different for us. NOTHING in this world is more important than that little boy. He has been and will always be the light of our life. He continues to show us undeniable strength at such a tiny, tender age. Parker has endured more hardships in his short life than five adults combined. This serves as a reminder to not cry over spilt milk or crushed up Doritos on the floor after I just vacuumed it. <insert eye roll>
He is a special boy with extraordinary circumstances, who happens to be obsessed with Doritos. Needless to say Parker is going to get as many Doritos as his little body can handle ALL WEEKEND!
In the mean time, I will be counting the additional gray hairs that have magically appeared on my head this week, all while enjoying a nice glass of Chardonnay.
Those of you who know me personally know I am WAY more fun with a glass of wine in my system.
Anyway, last Sunday I was prepping for the busy week we were to have ahead of us. Parker had school and therapy, we had several appointments (one being my hair go figure), and I just like to be organized. I am still on maternity leave so I am really trying to get us on a schedule to work when I go back to work. Parker had his nighttime snack of crackers and milk before bed, as he always does. I tucked him and he reached up to give me a goodnight kiss, something new he has been doing with Casey and I. Let me tell you that little bit of affection he gives means the world to us.
At around 5AM Monday morning I was up feeding Paisley and I heard Parker dry heaving. This is not unusual for Parker. I immediately ran to his room and he wasn't in his bed. So, I run downstairs to see if he's in the living room and he is laying on the couch. Also, not unusual behavior since his sister has been born. He is a master at getting up early in the morning and raiding the pantry for Doritos. We have since put a lock on the pantry the stinker!
He continued to dry heave so I rushed him up to the bathroom. I remember thinking, "YES! Mom win! He didn't throw up on the couch!"
Parker had started school the week before so I figured he had probably caught the inevitable bug that was going around his preschool, because there has got to be something going around school always, right? I helped support him over the toilet and the poor guy just couldn't get anything out. Then he looked at me and I could see little sweat beads on his nose and forehead. This child NEVER sweats. It's actually a problem we have with him. Then he started coughing. Not like a deep cough, but a little tickle cough. I figured he had something in his throat or a tickle so I took him down to the kitchen to get a drink of water. When I stepped away from him he couldn't stand. His balance was off. So, I picked him up and away we went.
When I got to the kitchen I put him down and he was like a ping pong ball bouncing back and forth between the walls and cupboards. It was reminiscent of our college years - I will say that! Either Parker had just polished off a bottle of whiskey or there was something seriously wrong with him. I will go with there was something seriously wrong...
Immediately I called Casey. He had to go to work super early that morning so I was alone with both kids. Paisley was swinging away dozing off, quiet for the first time in her life, thank God. I tried calling Casey's cell phone countless times, each time leaving messages that were more and more frantic. Then I tried the office number twice. No one answered.
I was supporting Parker while he was standing and leaving Casey a voicemail.
"You need to call me NOW. Something is horribly wrong with Parker...Oh my God..."
At that moment, before I could finish my message Parker went limp at my side. I laid him on the kitchen floor and his eyes were wide open starring off in space. His tongue was clicking and his left fist was clenched super tight. He started turning a shade of gray...
COMMENCE PANIC.
"911 What is your emergency?"
I screamed, "My son! Oh my God my son! He's having an episode. He has Hydrocephalus. I don't think he's breathing. I can't see his chest moving."
"You don't think he's breathing? Do you know CPR? You are going to have to do CPR," she said.
I got down on the floor next too him looking for any sign, just any sign at all that his little body was breathing and I honestly could not find one. His little body kept tightening up and his color kept getting more and more gray. I put my face close to his and I could feel his body heat, but no air.
Just as I was about to start CPR an officer arrived. He came in and we are talking like minutes after the EMT's came. They walked in the door, two of them, looked at Parker and saw what I saw. After a couple more minutes he closed his eyes and took a breath. Whew. His color changed from gray/blue to white as a ghost. They whisked him away so quickly. Our neighbor saw the ambulance lights and ran over. She is an angel and stayed with Paisley so I could go be with Parker.
"Do you want me to stay with the baby?" she said.
I replied, "Baby? Oh my God I have a baby! Yes! Thank you!"
Throwing diapers on the couch and bottles on the counter I sprinted out of the house so fast. I had never really left my daughter, but boy did I decide to start the "cutting of the cord" process dramatically. For the love...
At this point we still could not get a hold of Casey and wouldn't you know it the phone charger that my phone was plugged into all night was broke and my phone was DEAD. Thank God the officer had my dad's phone number because he is also an officer in the area. My dad said he'd send reinforcements.
The drive over, though only a few blocks, was the worst drive ever. I didn't know if my son was alive. Honest to God I had no idea what happened to him. Did he have a seizure? Stroke? Cardiac arrest? It's the absolute worst feeling as a parent. I sprinted into the emergency room and the EMT greeted me. He told me Parker was still unconscious, but he was stable. The physician was pretty confident what we had witnessed was in fact a seizure and they needed to get Parker to the university hospital, stat. They couldn't fly helicopters that morning because of the weather so they were working on getting an ambulance.
I ran to my son and he laid there so peaceful and calm. Unlike the scene around him that's for sure. He was white as a ghost, still, but in comparison to his earlier shade I was glad to see it. I didn't see the whites of his eyes for over an hour and a half.
Sheer panic set in again because I realized I still hadn't been able to get a hold of Casey. What if they transported him and Casey had no idea what was going on? It was incredibly stressful. So, I called one of his coworkers. Thank goodness she saw the missed call and that prompted Casey to check his phone that was locked up. To say he was devastated is an understatement. I don't even know how long it took him to get to the hospital, but let's just say it's a good thing cops weren't patrolling his route that morning.
The ambulance finally arrived and I was able to ride with sweet Parker to the university hospital. He came to in the ambulance and the look on his face was priceless. He looked over at me like what the ...? Where am I?
That strong, brave boy did not cry ONE time in that ambulance. Not one! His oxygen was a little low when we took off, but after about an hour it got better. Parker appeared to be stable. Thank you Lord! Once we arrived at the hospital the staff immediately started the shunt checks.
X-Rays.
MRI.
Neuro Exam.
He passed all of them. His shunt was fine. That meant no brain surgery. So what the heck?
Parker has quite the extensive neurological medical history going on. You move past one hurdle and you kind of put it in the back of your brain, never revisiting the horrible memory. I suppose this was a crucial mistake because we later found out that his extensive neurological issues were causing the seizures. I didn't even think this was a possibility.
Parker has neonatal seizures at birth. They were stemming from damage on the front lobe of the left side of his brain. The area of the brain that regulates breathing. So at birth, his oxygen and heart rate dropped and that is exactly what happened this time. Turns out, he more than likely wasn't breathing the way he should have been. The Neurologist thought it was because the blood goes to support vital organs during a seizure and his Neurosurgeon is contributing it to the source of the seizure and comparison to his neonatal seizures. Parker has doctors who disagree? NO! <insert sarcasm>
He said to us, "I have a lab and I study the effects of these types of seizures. They can be fatal so you really have to stay on top of the medication and you may have to perform CPR to jump start him."
Talk about a punch to the gut. At the end of the day there is NO way to know for sure what type of seizure it was, but we have to prepare for the worst. Hell, he may never even have another one. Unfortunately both of the doctors did agree that this was more than likely not an isolated incident. This was a new reality for him, for us, for our family.
It just feels so unfair that we are always preparing for the worst. For three and a half years it's always been something. Our hearts and minds hurt right now. We've been here before, different circumstances of course, but still with our son and still with his darn brain. It feels like everything we've done the past couple years weren't good enough. We keep up with all of his appointments, therapies, etc. It felt like none of that mattered because we could not protect him or prevent this.
Parker had follow-up appointments/tests the Friday following his seizure. He had to endure the Neurosurgeon's office and an EEG. EEG's are not fun, for an adult, let alone a busy and CRANKY 3 year old. Did I mention his medication has a side effect of "moodiness". Well, it's legit. He is moody. The poor child cried as I had to pull the glue off of his head last night. I seriously gave him three baths, refilling the tub with clean, warm water, because he enjoys the water so much. Then you know what has to happen again? I have to go at his scalp and forehead again to try to get the glue off. Even though it's silly, you know the removing of glue, it's still hard to watch him go through pain again this week. IV's, blood draws, MRI's, X-Rays...it's just too much.
Parker should be starting school with none of these worries. Casey and I should be sleeping through the night (well as much as one can with a new baby) without worrying about our son not waking up in the morning. Instead we are praying, praying so hard, that this doesn't happen again and if it does, it doesn't take our sweet boy away from us permanently like it's apparently capable of doing.
This bump in the road is actually more like a hill in the road. I know we've been here before. We've had to learn about a new diagnosis and it's adjustments to life. That's exactly what this is. I will get there and wrap my brain around it. Right now I'm worried sick, angry and grieving over yet another diagnosis for our sweet boy. I sit and watch him in the video monitor breathing and moving. I count my blessings because as always the outcome could have been so much worse.
We will adjust and plan. We will update our CPR certifications. We will always remember his seizure medication. We will time his seizures. We will keep his appointments. We will accommodate.
We will do all of this because that's what we do in this house. Life has never been any different for us. NOTHING in this world is more important than that little boy. He has been and will always be the light of our life. He continues to show us undeniable strength at such a tiny, tender age. Parker has endured more hardships in his short life than five adults combined. This serves as a reminder to not cry over spilt milk or crushed up Doritos on the floor after I just vacuumed it. <insert eye roll>
He is a special boy with extraordinary circumstances, who happens to be obsessed with Doritos. Needless to say Parker is going to get as many Doritos as his little body can handle ALL WEEKEND!
In the mean time, I will be counting the additional gray hairs that have magically appeared on my head this week, all while enjoying a nice glass of Chardonnay.
Monday, September 28, 2015
Let's Hope the 3rd Shunt is a Charm!
As mentioned before, Casey and I have never had to live in a world with a "date" of surgery. I suppose the closest thing we've had was knowing that eventually he would need a new shunt when they externalized his old one. That was different though. We were already living in the hospital for weeks at that point. This time we had to wait over a week. That was a long time to keep Parker healthy and not freak out at any odd behavior, now that we knew something was wrong.
Your mind plays tricks on you...
The days leading up the surgery Parker started getting very, very ill. On Wednesday morning he woke up with a fever and threw up. Great. You've got to be kidding me!!! I thought surgery would be cancelled for sure. How couldn't it!? They cancel surgery if you have a darn cold.
I called his pediatrician for a consultation and blood work. I wanted to see where his counts were and if there was anything obvious going on with him. He kept pulling at his ears so I immediately thought, he is picking this week of all weeks to get his first ear infection. Why wouldn't he!
Well, I was wrong. Parker's counts were all normal and their best guess was he that was suffering from a virus that they had seen going around. The Neurosurgeon was consulted as well. He too believed it was just a virus. As long as Parker was fever free on Sunday, they still wanted to do the surgery on Monday.
Monday was the surgery date. Even though the paperwork I got sent home with said TUESDAY. Thank God Parker's nurse at the university hospital picked up that I kept saying "Tuesday". Oye...
Lots of nerves and sleepless nights later, Sunday rolled around and Parker was fever free. Surgery was going to happen in just one short day. He had a couple of visitors on Sunday and Monday morning before we left. The Neurosurgeon told me it would more than likely just be over night, but Casey and I knew better.
We packed for three days.
The day of surgery was a whirlwind. This was a completely new experience for us. We went to the Day of Surgery check in. Then we were escorted to the anesthesia area where they would prep Parker for surgery. We hung out there with Parker for seriously over like an hour and a half. All of his vitals were amazing and he was freaking out. He was OVER the entire day before it even started because he was staaaarving. HANGRY is the term best used here. We all did the best we could at entertaining the beast until it was time to go.
The Anesthesiologists came in and talked to us. They ended up giving Parker a little "red liquid courage" they called it. We all know this as Valium. Next thing I knew Parker was a noodle in my arms laughing at everything. I asked for some. I was denied.
They asked me if I usually went with them when they put him under. No one has ever given us that option before, but, we've never gone this route before either. We usually had to watch our little angel being rolled away in the oversized crib by complete strangers. So, they explained to me that I can sing to him and help calm him and when he's asleep I leave. Perfect. Sign me up. If I can be with my baby as long as possible, then I'm game. They did say it can be scary for parents because kids tend to freak out when they put the mask on them and then they make odd noises...I didn't care, but appreciated the warning.
Next thing I know the nurse is coming in and pulling out scrubs, a mask and booties. I am like, wait a minute...
She says, "It's a sterile environment so you have to wear these."
Okay...
She helps me get ready and I pick up my angel and off we go. He was quite possibly the cutest little patient ever.
Picking Parker up and being the one to take him down the hall was very surreal. It really happened so quick that I didn't have time to process what was really going on. I was following the nurse and next thing I knew we were in this extremely busy hallway. It was freezing cold in there. I saw a bunch of doors and people in scrubs...surgical scrubs...
She opened the double doors and I was in complete shock to learn I was in his actual operating room. I mean, there was a chair next to the table and tools and MRI scans on the walls...oh my gosh...I was not prepared for that! I guess I might be a little bit of a dummy, but I didn't think I would be in there for some reason. I don't know where I thought we were going, but that surprised me.
They had me sit on the chair next to the table. I began to shake a little bit. It could have been the fact that it was like sub zero temperatures, but it was also probably the fact that I was so nervous I could have thrown up. The nurse grabs a nice big warm blanket and wraps us in it. I turn Parker around as they instruct me to.
She says, "Okay I am going to put this gas mask on Parker. He might fight it a little bit, but that's okay. Just start talking and singing to him."
I wanted to sing to him, really I wasn't embarrassed, but the problem I now faced was a little more important.
"Am I supposed to be smelling this gas," I ask.
I mean I could smell the gas like it was no one's business. The last thing we needed was for me to fall over and pass out on this sterile floor! Only me.
She giggles and says it would take a lot more gas to knock me out, but grabs another blanket to block it from my face.
So I start singing, "You are my sunshine. My only sunshine. You make me happy when skies are gray. You'll never know dear, how much I love you. Please don't take my sunshine away."
He didn't cry or whimper once. I couldn't see his little face, but the nurse looking at him said he was smiling. Then a couple moments later complete silence.
That was it. He was fast asleep in my arms. Then they told me to pick him up and lay him on the table. I had to be the one to lay my baby on the table where they would soon operate on his brain.
Whew.
I could do this.
Really I just wanted to run away with him and pretend this wasn't happening. Putting my best brave face on I picked him up and placed his noodle like body on that operating table. He was sleeping so peacefully. He was incredibly beautiful...perfect in fact. It pained me to know that the next time I saw him he would be upset and in pain from the surgery. I kissed his cold little cheek and left him in the care of the nurses. I could feel my glasses start to fog up. I was going to lose it!
Pull it together woman! Not here. Not now.
As I was leaving the Neurosurgeon walked in, a little surprised to see me. He was probably thinking, "Gosh this woman is nuts! I can't get away from her!"
I told him, "Oh hey...I am here to assist."
He laughed and awkwardly patted my back.
Awkward pretty much sums up our relationship.
I followed the nurse out of the double doors and she immediately embraced me. This was not her first rodeo. She kept commenting on how good of a job I did.
"You are amazing. You are so brave. Parker needed you and you didn't show a hint of fear," she said.
Tears began to stream fast and far down my face and she just held me and told me to let it out. We stood there for several minutes while I composed myself. Dozens of people must have passed us in that busy hallway, but I didn't see any of their faces. Just their maroon scrubs rushing by.
At that moment I felt pity for myself and for Parker. I hated that this happened again and so soon after we were finally getting on the right track. I was able to start job searching again and Parker was so happy. He was a normal kid for once. I signed him up for tot gym and swimming. Now, it was all over. Those classes wouldn't be allowed for some time because of this surgery. Was this how it was going to be for the rest of our lives? Was I always going to have to pull him out of activities that he loved? I mean, I cannot tell you how happy this boy was in tot gym and in the pool.
It's so...unfair.
I told family members that it was one of the hardest things I've ever done for Parker, but I was grateful for the opportunity to be with him to that point in the process. It was my voice that he went to sleep to in pure comfort and security. He nestled into me and I could hold him and feel his warmth until the very last second. To him, it was a blink of an eye before he woke up again. To me, it was hours of waiting and anxiety. If I could do it all again, though, I would in a heart beat.
After I was done I was taken back to Casey. We gave each other the "we got this look" and went to the waiting room. He is an aimless wanderer and I stalk the door waiting for the doctor to come in. I think it was a little over three hours later the receptionist told us the doctor was on his way up and to meet him in a consult room. We sprinted to the room.
The doctor came in and told us that Parker did great. There weren't any complications or blood loss. He then went on to explain that his suspicions were justified. When Parker's ventricles shrunk so low in December the shunt catheter didn't have any fluid to float in. Tissue then clogged the catheter. When he tested the catheter during surgery there was little to no flow of Cerebral Spinal Fluid traveling through it. He said Parker's body was just adjusting to the progressive build up, but it wouldn't have been long until things got very serious.
So, he replaced the shunt system, moved the catheter and actually moved the shunt to the top of Parker's head. Before it was actually located on the back of his head behind his ear. Now it is painstakingly obvious on the top of his head. This was always one of my worst fears. That someday Parker would have this huge shunt sticking up from his head. I don't want people gawking or making fun of him. This, however, is the best placement for the draining that he so desperately needs right now. So, on top of the head it is. Whatever is best for Parker. It is a part of him and I love all of him so I love this stupid shunt, too.
Soon after our consult with the doctor we headed down to recovery to see Parker. Unfortunately we could hear all that was Parker from the hallway. Turns out recovery isn't so relaxing when you are forced to be neighbors to a toddler. Those poor patients...
Parker was given juice (which he did not throw up thank you Lord) and we were on our way to the regular Pediatric Inpatient Floor! I cannot tell you how happy we were to learn we needed no Pediatric Intensive Care Unit time! YES! That means he's doing great and he is stable. By time we got to his room it was well into the evening. The night nurse walked in and introduced herself and recognition sparked...she has taken care of Parker before and is AMAZING.
Side Note: Nurses came in and recognized not me or Parker, but Casey. Probably because of his good looks, but more so because they remember his ridiculous impressions of the doctors!!! Seriously a year and a half later they remembered him and those stupid impressions. Oye...
So, I would love to tell all of you that Monday night was amazing. It was hands down one of the worst nights we've ever had in that hospital. Parker was so uncomfortable for obvious reasons and setting off alarms left and right. Turns out, he does not like to be hooked up to things (go figure) and only wanted his mommy. No matter who tried to help hold or comfort him, he did not settle. A rocking chair next to his IV pole and no sleep...we made it to Tuesday.
Casey was my go getter. If he wasn't there for this surgery I would have peed my pants and never eaten. True story.
I was of course super nervous for surgery, but what had me the most nervous was the recovery period. I knew having a toddler in the hospital would be a challenge, but man oh man. This was seriously the most challenging aspect of the entire ordeal. Every time we looked at him he pulled something important off or was trying to escape his crib. Parker was so uncomfortable and anxious to get out of his room. We were told we would be getting a roommate on Tuesday, never showed. I think the nurses must have had some secret conference and said that no patient will recover in Parker's room! Needless to say, we never got a roommate.
On Tuesday Parker had a MRI and even got to enjoy some play time! He was running up and down those hospital halls like he had never ran before. Once again, cutest patient ever...
We still have a lot of emotion surrounding this surgery and his recovery. Some of it will hopefully disappear as time goes on without complications. We go back to the university hospital next week to have another MRI scan and meet with his surgeon. His surgeon did change the setting on his shunt to drain faster. So, we are praying that there is a change in the size of his ventricles.
This experience has been unique, but okay... The surgery was what we believe to be successful and the staff we encountered were truly phenomenal! Our nurses were amazing (especially our night nurses). Parker was not always the easiest to handle, but they never blinked an eye. I know they are used to that kind of stuff, but their patience and kindness did not go unnoticed.
So that's that! Never a dull moment when you parent Parker. I will keep everyone updated in the weeks to come. October is a busy month for Parker: Neurosurgery appointment, Disability and Development Assessment and his first official Vision Exam. Hopefully October will be a month of "questions finally answered" for all of us. I also hope Parker is well enough to enjoy some traditional Fall festivities along the way!
Your mind plays tricks on you...
The days leading up the surgery Parker started getting very, very ill. On Wednesday morning he woke up with a fever and threw up. Great. You've got to be kidding me!!! I thought surgery would be cancelled for sure. How couldn't it!? They cancel surgery if you have a darn cold.
I called his pediatrician for a consultation and blood work. I wanted to see where his counts were and if there was anything obvious going on with him. He kept pulling at his ears so I immediately thought, he is picking this week of all weeks to get his first ear infection. Why wouldn't he!
Well, I was wrong. Parker's counts were all normal and their best guess was he that was suffering from a virus that they had seen going around. The Neurosurgeon was consulted as well. He too believed it was just a virus. As long as Parker was fever free on Sunday, they still wanted to do the surgery on Monday.
Monday was the surgery date. Even though the paperwork I got sent home with said TUESDAY. Thank God Parker's nurse at the university hospital picked up that I kept saying "Tuesday". Oye...
Lots of nerves and sleepless nights later, Sunday rolled around and Parker was fever free. Surgery was going to happen in just one short day. He had a couple of visitors on Sunday and Monday morning before we left. The Neurosurgeon told me it would more than likely just be over night, but Casey and I knew better.
We packed for three days.
The day of surgery was a whirlwind. This was a completely new experience for us. We went to the Day of Surgery check in. Then we were escorted to the anesthesia area where they would prep Parker for surgery. We hung out there with Parker for seriously over like an hour and a half. All of his vitals were amazing and he was freaking out. He was OVER the entire day before it even started because he was staaaarving. HANGRY is the term best used here. We all did the best we could at entertaining the beast until it was time to go.
The Anesthesiologists came in and talked to us. They ended up giving Parker a little "red liquid courage" they called it. We all know this as Valium. Next thing I knew Parker was a noodle in my arms laughing at everything. I asked for some. I was denied.
They asked me if I usually went with them when they put him under. No one has ever given us that option before, but, we've never gone this route before either. We usually had to watch our little angel being rolled away in the oversized crib by complete strangers. So, they explained to me that I can sing to him and help calm him and when he's asleep I leave. Perfect. Sign me up. If I can be with my baby as long as possible, then I'm game. They did say it can be scary for parents because kids tend to freak out when they put the mask on them and then they make odd noises...I didn't care, but appreciated the warning.
Next thing I know the nurse is coming in and pulling out scrubs, a mask and booties. I am like, wait a minute...
She says, "It's a sterile environment so you have to wear these."
Okay...
She helps me get ready and I pick up my angel and off we go. He was quite possibly the cutest little patient ever.
Picking Parker up and being the one to take him down the hall was very surreal. It really happened so quick that I didn't have time to process what was really going on. I was following the nurse and next thing I knew we were in this extremely busy hallway. It was freezing cold in there. I saw a bunch of doors and people in scrubs...surgical scrubs...
She opened the double doors and I was in complete shock to learn I was in his actual operating room. I mean, there was a chair next to the table and tools and MRI scans on the walls...oh my gosh...I was not prepared for that! I guess I might be a little bit of a dummy, but I didn't think I would be in there for some reason. I don't know where I thought we were going, but that surprised me.
They had me sit on the chair next to the table. I began to shake a little bit. It could have been the fact that it was like sub zero temperatures, but it was also probably the fact that I was so nervous I could have thrown up. The nurse grabs a nice big warm blanket and wraps us in it. I turn Parker around as they instruct me to.
She says, "Okay I am going to put this gas mask on Parker. He might fight it a little bit, but that's okay. Just start talking and singing to him."
I wanted to sing to him, really I wasn't embarrassed, but the problem I now faced was a little more important.
"Am I supposed to be smelling this gas," I ask.
I mean I could smell the gas like it was no one's business. The last thing we needed was for me to fall over and pass out on this sterile floor! Only me.
She giggles and says it would take a lot more gas to knock me out, but grabs another blanket to block it from my face.
So I start singing, "You are my sunshine. My only sunshine. You make me happy when skies are gray. You'll never know dear, how much I love you. Please don't take my sunshine away."
He didn't cry or whimper once. I couldn't see his little face, but the nurse looking at him said he was smiling. Then a couple moments later complete silence.
That was it. He was fast asleep in my arms. Then they told me to pick him up and lay him on the table. I had to be the one to lay my baby on the table where they would soon operate on his brain.
Whew.
I could do this.
Really I just wanted to run away with him and pretend this wasn't happening. Putting my best brave face on I picked him up and placed his noodle like body on that operating table. He was sleeping so peacefully. He was incredibly beautiful...perfect in fact. It pained me to know that the next time I saw him he would be upset and in pain from the surgery. I kissed his cold little cheek and left him in the care of the nurses. I could feel my glasses start to fog up. I was going to lose it!
Pull it together woman! Not here. Not now.
As I was leaving the Neurosurgeon walked in, a little surprised to see me. He was probably thinking, "Gosh this woman is nuts! I can't get away from her!"
I told him, "Oh hey...I am here to assist."
He laughed and awkwardly patted my back.
Awkward pretty much sums up our relationship.
I followed the nurse out of the double doors and she immediately embraced me. This was not her first rodeo. She kept commenting on how good of a job I did.
"You are amazing. You are so brave. Parker needed you and you didn't show a hint of fear," she said.
Tears began to stream fast and far down my face and she just held me and told me to let it out. We stood there for several minutes while I composed myself. Dozens of people must have passed us in that busy hallway, but I didn't see any of their faces. Just their maroon scrubs rushing by.
At that moment I felt pity for myself and for Parker. I hated that this happened again and so soon after we were finally getting on the right track. I was able to start job searching again and Parker was so happy. He was a normal kid for once. I signed him up for tot gym and swimming. Now, it was all over. Those classes wouldn't be allowed for some time because of this surgery. Was this how it was going to be for the rest of our lives? Was I always going to have to pull him out of activities that he loved? I mean, I cannot tell you how happy this boy was in tot gym and in the pool.
It's so...unfair.
I told family members that it was one of the hardest things I've ever done for Parker, but I was grateful for the opportunity to be with him to that point in the process. It was my voice that he went to sleep to in pure comfort and security. He nestled into me and I could hold him and feel his warmth until the very last second. To him, it was a blink of an eye before he woke up again. To me, it was hours of waiting and anxiety. If I could do it all again, though, I would in a heart beat.
After I was done I was taken back to Casey. We gave each other the "we got this look" and went to the waiting room. He is an aimless wanderer and I stalk the door waiting for the doctor to come in. I think it was a little over three hours later the receptionist told us the doctor was on his way up and to meet him in a consult room. We sprinted to the room.
The doctor came in and told us that Parker did great. There weren't any complications or blood loss. He then went on to explain that his suspicions were justified. When Parker's ventricles shrunk so low in December the shunt catheter didn't have any fluid to float in. Tissue then clogged the catheter. When he tested the catheter during surgery there was little to no flow of Cerebral Spinal Fluid traveling through it. He said Parker's body was just adjusting to the progressive build up, but it wouldn't have been long until things got very serious.
So, he replaced the shunt system, moved the catheter and actually moved the shunt to the top of Parker's head. Before it was actually located on the back of his head behind his ear. Now it is painstakingly obvious on the top of his head. This was always one of my worst fears. That someday Parker would have this huge shunt sticking up from his head. I don't want people gawking or making fun of him. This, however, is the best placement for the draining that he so desperately needs right now. So, on top of the head it is. Whatever is best for Parker. It is a part of him and I love all of him so I love this stupid shunt, too.
Soon after our consult with the doctor we headed down to recovery to see Parker. Unfortunately we could hear all that was Parker from the hallway. Turns out recovery isn't so relaxing when you are forced to be neighbors to a toddler. Those poor patients...
Parker was given juice (which he did not throw up thank you Lord) and we were on our way to the regular Pediatric Inpatient Floor! I cannot tell you how happy we were to learn we needed no Pediatric Intensive Care Unit time! YES! That means he's doing great and he is stable. By time we got to his room it was well into the evening. The night nurse walked in and introduced herself and recognition sparked...she has taken care of Parker before and is AMAZING.
Side Note: Nurses came in and recognized not me or Parker, but Casey. Probably because of his good looks, but more so because they remember his ridiculous impressions of the doctors!!! Seriously a year and a half later they remembered him and those stupid impressions. Oye...
So, I would love to tell all of you that Monday night was amazing. It was hands down one of the worst nights we've ever had in that hospital. Parker was so uncomfortable for obvious reasons and setting off alarms left and right. Turns out, he does not like to be hooked up to things (go figure) and only wanted his mommy. No matter who tried to help hold or comfort him, he did not settle. A rocking chair next to his IV pole and no sleep...we made it to Tuesday.
Casey was my go getter. If he wasn't there for this surgery I would have peed my pants and never eaten. True story.
I was of course super nervous for surgery, but what had me the most nervous was the recovery period. I knew having a toddler in the hospital would be a challenge, but man oh man. This was seriously the most challenging aspect of the entire ordeal. Every time we looked at him he pulled something important off or was trying to escape his crib. Parker was so uncomfortable and anxious to get out of his room. We were told we would be getting a roommate on Tuesday, never showed. I think the nurses must have had some secret conference and said that no patient will recover in Parker's room! Needless to say, we never got a roommate.
On Tuesday Parker had a MRI and even got to enjoy some play time! He was running up and down those hospital halls like he had never ran before. Once again, cutest patient ever...
So, as you can see. Parker really just needed out of his crib. It was hard to believe he would be ready to run around literally 24 hours after surgery, but he was. He is hands down the strongest person I know.
A day after he was running the halls he was released from the hospital. Typically we would have only had to of stayed for one day, but the doctor really just wanted to keep Parker. Probably because it's Parker. Who knows. We knew better and were planning on being there for a while. He was doing so well and we were trying hard to filter our frustration at still being there, but, whatever is best! Always have to remind yourself of that. We still have a lot of emotion surrounding this surgery and his recovery. Some of it will hopefully disappear as time goes on without complications. We go back to the university hospital next week to have another MRI scan and meet with his surgeon. His surgeon did change the setting on his shunt to drain faster. So, we are praying that there is a change in the size of his ventricles.
This experience has been unique, but okay... The surgery was what we believe to be successful and the staff we encountered were truly phenomenal! Our nurses were amazing (especially our night nurses). Parker was not always the easiest to handle, but they never blinked an eye. I know they are used to that kind of stuff, but their patience and kindness did not go unnoticed.
So that's that! Never a dull moment when you parent Parker. I will keep everyone updated in the weeks to come. October is a busy month for Parker: Neurosurgery appointment, Disability and Development Assessment and his first official Vision Exam. Hopefully October will be a month of "questions finally answered" for all of us. I also hope Parker is well enough to enjoy some traditional Fall festivities along the way!
Friday, September 25, 2015
Back Story .... Surgery #4
Well.. Where do I begin?
Let's rewind time to September 11. This was the day that Parker had a routine check-up with his Neurosurgeon. It had been 6 months since his last visit. He had been doing pretty good (or so we thought), so honestly I wasn't a tad bit worried. In fact, I went to this appointment alone. They changed the date at the last minute. Instead of rescheduling his appointment we decided that since he was doing so well, it would be an in and out procedure. These appointments are always in and out. No need to get all worked up about who could make it and who couldn't. In fact, I had my afternoon planned to pick up racing packets at a sports store in the mall and grab lunch with Parker after his appointment.
I couldn't have been more wrong about how this day would end.
The day started off typical. We first signed in so he could get his MRI. Now, here is where things started to get off track a bit. Myself or Casey always go back with Parker when he gets his MRI. One of us stands guard with the stroller and diaper bag, the other takes him back with the technician. Then a technician goes into the machine with him to help keep him calm. He always does a great job. In and out in 2 minutes! Because a technician goes in with him we stand back with the other technicians and see the results of his MRI as they are coming through. We aren't by any means Radiologists, but we aren't complete idiots either. This first glance of his scans usually give us an idea what his ventricles look like. Most of the time, to the naked eye, they don't look too different.
Well, this time the technician looks at me and asks if I want to get in with him. I had never seen her before and she wasn't playing around. This lady was in a hurry and wasn't offering to go in with him. So, I don't hesitate. I didn't want him to be frightened, so I stripped off my jewelry and hopped on top of the table to go in with him. Frozen soundtrack and a set of earplugs later we were getting the scan.
So...obviously I was unable to see the scans because I was side kicking it with Parker...
After his MRI we went to meet with his Neurosurgeon. My experience with this office is that we are in and out, quickly. They are very busy balancing patient appointments and procedures and typically don't make you wait. Today, however, we waited for 45 minutes.
"Have you seen him yet? What is going on? I am on pins and needs," Casey text.
I replied, "I know I literally have no clue what is taking so long. It never takes so long. He must be really backed up with patients today."
As a mother of a toddler I pride myself on creative entertainment. One can only entertain a toddler so much in a Neurosurgeon's exam room. They don't even have real beds...! So, cups and odd tools it was!
Finally I could hear a knock at the door...
First words out of his mouth were, "Where is your husband?"
I look at him and reply, "Not here."
"He's not here," the doctor said.
At this point I am like okay, what is going on here. Commence bad gut feeling...
He sits down and says he that he just went through Parker's entire file. Note, he has not been at the university hospital for an entire year. He was actually at another hospital doing a fellowship and we were seeing an interim doctor. I never really clicked with the interim doctor and was so excited to have our original surgeon back. He knew I was emotional and at times crazy, but took Parker on anyway. Brave man. It took me two months to get our appointment switched to this surgeon from the other. I just had a feeling Parker needed to be under the care of him.
"Okay. I am going to let you tell me what's been going on and then I'll give you my thoughts," he says.
I was a little confused because I wasn't really sure what was going on that I needed to talk about. He must have noted my confusion and then brings up all kinds of issues we were having with other specialists at the hospital. He seriously read through every single note from every single doctor I had talked to since he had been gone. God love him.
So, as Parker is literally ripping the office up, we talk about all of the appointments and phone calls that went on throughout the year.
Here are some of the highlights:
- MRI in December 2014 indicated ventricles were at a very low state - almost too low.
- Hospitalization in March 2015 because of unknown excessive vomiting - MRI at that time indicated ventricles tripled in size - they were however on the "normal scale" and no intervention was needed at that time.
- March 2015 (2 weeks later) - MRI at that time indicated ventricles were a tiny bit bigger. We were told this could be Parker's new norm.
- June 2015 - Parker has significant developmental delays and is red flagged at a Neonatology appointment. We were referred to the Center for Disabilities and Development at the university for assessment.
- July 2015 - Parker begins having "zoning off spells". I contact his Neurologist and we were to talk about a possible EEG and MRI. No one from the office called to schedule and I did not aggressively seek to make this appointment. The spells went away. (side note: feeling pretty guilty about this)
- August 2015- Parker begins regression developmentally. He loses balance and easily falls many times throughout the day.
- September 2015 - Parker begins to lose balance more frequently and starts zoning off spells again. He wakes many times throughout the night.
I look at him a little bit overwhelmed by his take on the timeline.
"When you put it that way, yeah, I guess there has been a lot going on...," I say.
He replies with, "Let me just watch Parker for a couple minutes."
This was kind of awkward. Was I supposed to be a silent bystander in this period of observation? He clearly doesn't want me talking. I am a nervous talker and Parker's Neurosurgeon is a studier. Not a super good combination, but I did my best to shut up. He has moments of silence where he is just thinking. I do my best not to act weird or awkward. This was seriously the longest 5 minutes of my life.
Of course during those 5 minutes Parker is falling all over the place and acting as rotten as can be. At this point he had been in the tiny exam room for over and hour and I can safely say was over the entire experience. Cheerios and Kleenex are flying everywhere - at one point he was slapping his surgeon's shoes. He even went behind him and started flapping his white doctor's coat. My god this child.
So, then the Neurosurgeon pulls up all of Parker's MRI scans to show me his measurements. Sure enough, his ventricles were getting bigger. Knowing how crazy I am he even got out the good ole measuring tool on the computer to prove to me that they were bigger. At this point in the game he said it was his belief that the valve in his shunt malfunctioned back in December, hence the huge variation in the size of his ventricles. So, his best guess...the valve was broken.
Which means brain surgery to repair it. You've got to be kidding me! Commence tears!
"I mean he has to have surgery? Are you sure? I don't know what to do," I wailed.
He replies, "Look. It's my best guess. There is a lot going on and in six months we are going to wish we took care of it now. It's not super common to operate when a patient isn't showing shunt malfunction symptoms, but with Parker, we can't take many chances."
"So you would do it?" I ask.
He said, "Yes. I would do it. I can do it today even."
"What! No. NO. I cannot do this today. I don't even have a clean pair of underwear packed," I cried.
<Why that came out of my mouth I don't know. Moments you can't take back...>
He then said that he didn't want to wait long, but, if his Shunt Series x-rays came back normal we could wait a week. So, I agree and we go get his x-rays. These x-rays show the shunt and all of the tubing that goes down into his abdomen. Typically doctors can see if there is a kink or some level of disconnection.
They came back normal. Whew.
The doctor then says he is going to do all of the pre-op tests while we are there. So, I went on a mission through that entire hospital for x-rays, blood work and a physical. The highlight (I say this with complete and utter sarcasm) was probably getting a urine sample from a toddler who wears diapers. Like, are you kidding me? Wow. That was interesting. They taped this little contraption over his "man parts" and we waited.
And waited.
And waited.
Eight ounces of juice and 30 minutes later he tinkled like less than an ounce. What-ever! I say it counts! Peace!
Next thing I knew the doctor popped back in with a consent form. This is real life. When they hand you the consent form it's serious and it's happening. He went through all of the risks that I was unfortunately very aware of. One of them being a shunt infection...
I signed my name and that was it. Parker was scheduled for surgery.
At this point we had been in the hospital something like 6 hours. Everyone close to me was frantic and trying to help in any way they could, knowing I was there alone. I was really fine, though. Oddly enough I was okay. I had a couple meltdown moments, but overall, once I had a good cry, I was just hell bent on getting through those pre-op appointments, getting Parker lunch and changing his diaper. I needed to get home and talk this day over with Casey. Casey was aware of what had transpired and was also freaking out.
I cannot tell you how well Parker did. He is a scheduled child, almost to a fault. If you mess with his schedule, watch out! Well, he didn't even get lunch that day until 2PM and he is usually taking a nap during this time. He was such a trooper and his cooperation made it a lot easier for me to handle.
So with our day of surgery instructions in hand we were on our way into the world. We have never been in a world with an impending brain surgery date. Casey and I struggled all weekend with the outcome of that appointment. Immense guilt consumed him for not being there. No one wants to put their child through surgery, so of course we start pondering whether or not we were doing the right thing. It's so hard! He wasn't showing the traditional symptoms of a shunt malfunction.
The following Sunday some of my close friends and I had already registered to do a 5K Race that benefited the Children's Hospital. We went wearing our Hydro Blue shirts and dominated. While we were enjoying a couple celebratory "adult beverages" after the race a woman approached me.
She asks, "Which one of you is Parker and which one of you has Hydrocephalus?"
I look at her and reply, "Parker is actually my son and he has Hydrocephalus."
"No way. I have Hydrocephalus. I have had it since I was 6 months old. I got it from bacterial meningitis. I doctor here at this hospital," she said.
I immediately take full advantage of speaking to a woman who suffers from the same condition as my son.
"Can you feel you shunt?"
"How many surgeries have you had?"
"How do you know if you shunt isn't working?"
"How old are you?"
"What do you do for a living?"
This lovely woman answered every single one of my questions and helped me in more ways than she will ever know. In fact, her most recent surgery had been over a decade ago. She wasn't showing the typical shunt malfunction symptoms (just like Parker currently). Her mom just had a feeling something was off and sure enough, it was. She was a healthy, active and amazing young woman. Meeting her gave me so much hope and strength. Meeting her made any guilt I had about putting Parker through surgery again disappear. We were doing the right thing.
God sent her to me that day. Out of 1600 people she found me. Needless to say there were a couple tears of happiness from us that afternoon.
Let's rewind time to September 11. This was the day that Parker had a routine check-up with his Neurosurgeon. It had been 6 months since his last visit. He had been doing pretty good (or so we thought), so honestly I wasn't a tad bit worried. In fact, I went to this appointment alone. They changed the date at the last minute. Instead of rescheduling his appointment we decided that since he was doing so well, it would be an in and out procedure. These appointments are always in and out. No need to get all worked up about who could make it and who couldn't. In fact, I had my afternoon planned to pick up racing packets at a sports store in the mall and grab lunch with Parker after his appointment.
I couldn't have been more wrong about how this day would end.
The day started off typical. We first signed in so he could get his MRI. Now, here is where things started to get off track a bit. Myself or Casey always go back with Parker when he gets his MRI. One of us stands guard with the stroller and diaper bag, the other takes him back with the technician. Then a technician goes into the machine with him to help keep him calm. He always does a great job. In and out in 2 minutes! Because a technician goes in with him we stand back with the other technicians and see the results of his MRI as they are coming through. We aren't by any means Radiologists, but we aren't complete idiots either. This first glance of his scans usually give us an idea what his ventricles look like. Most of the time, to the naked eye, they don't look too different.
Well, this time the technician looks at me and asks if I want to get in with him. I had never seen her before and she wasn't playing around. This lady was in a hurry and wasn't offering to go in with him. So, I don't hesitate. I didn't want him to be frightened, so I stripped off my jewelry and hopped on top of the table to go in with him. Frozen soundtrack and a set of earplugs later we were getting the scan.
So...obviously I was unable to see the scans because I was side kicking it with Parker...
After his MRI we went to meet with his Neurosurgeon. My experience with this office is that we are in and out, quickly. They are very busy balancing patient appointments and procedures and typically don't make you wait. Today, however, we waited for 45 minutes.
"Have you seen him yet? What is going on? I am on pins and needs," Casey text.
I replied, "I know I literally have no clue what is taking so long. It never takes so long. He must be really backed up with patients today."
As a mother of a toddler I pride myself on creative entertainment. One can only entertain a toddler so much in a Neurosurgeon's exam room. They don't even have real beds...! So, cups and odd tools it was!
Finally I could hear a knock at the door...
First words out of his mouth were, "Where is your husband?"
I look at him and reply, "Not here."
"He's not here," the doctor said.
At this point I am like okay, what is going on here. Commence bad gut feeling...
He sits down and says he that he just went through Parker's entire file. Note, he has not been at the university hospital for an entire year. He was actually at another hospital doing a fellowship and we were seeing an interim doctor. I never really clicked with the interim doctor and was so excited to have our original surgeon back. He knew I was emotional and at times crazy, but took Parker on anyway. Brave man. It took me two months to get our appointment switched to this surgeon from the other. I just had a feeling Parker needed to be under the care of him.
"Okay. I am going to let you tell me what's been going on and then I'll give you my thoughts," he says.
I was a little confused because I wasn't really sure what was going on that I needed to talk about. He must have noted my confusion and then brings up all kinds of issues we were having with other specialists at the hospital. He seriously read through every single note from every single doctor I had talked to since he had been gone. God love him.
So, as Parker is literally ripping the office up, we talk about all of the appointments and phone calls that went on throughout the year.
Here are some of the highlights:
- MRI in December 2014 indicated ventricles were at a very low state - almost too low.
- Hospitalization in March 2015 because of unknown excessive vomiting - MRI at that time indicated ventricles tripled in size - they were however on the "normal scale" and no intervention was needed at that time.
- March 2015 (2 weeks later) - MRI at that time indicated ventricles were a tiny bit bigger. We were told this could be Parker's new norm.
- June 2015 - Parker has significant developmental delays and is red flagged at a Neonatology appointment. We were referred to the Center for Disabilities and Development at the university for assessment.
- July 2015 - Parker begins having "zoning off spells". I contact his Neurologist and we were to talk about a possible EEG and MRI. No one from the office called to schedule and I did not aggressively seek to make this appointment. The spells went away. (side note: feeling pretty guilty about this)
- August 2015- Parker begins regression developmentally. He loses balance and easily falls many times throughout the day.
- September 2015 - Parker begins to lose balance more frequently and starts zoning off spells again. He wakes many times throughout the night.
I look at him a little bit overwhelmed by his take on the timeline.
"When you put it that way, yeah, I guess there has been a lot going on...," I say.
He replies with, "Let me just watch Parker for a couple minutes."
This was kind of awkward. Was I supposed to be a silent bystander in this period of observation? He clearly doesn't want me talking. I am a nervous talker and Parker's Neurosurgeon is a studier. Not a super good combination, but I did my best to shut up. He has moments of silence where he is just thinking. I do my best not to act weird or awkward. This was seriously the longest 5 minutes of my life.
Of course during those 5 minutes Parker is falling all over the place and acting as rotten as can be. At this point he had been in the tiny exam room for over and hour and I can safely say was over the entire experience. Cheerios and Kleenex are flying everywhere - at one point he was slapping his surgeon's shoes. He even went behind him and started flapping his white doctor's coat. My god this child.
So, then the Neurosurgeon pulls up all of Parker's MRI scans to show me his measurements. Sure enough, his ventricles were getting bigger. Knowing how crazy I am he even got out the good ole measuring tool on the computer to prove to me that they were bigger. At this point in the game he said it was his belief that the valve in his shunt malfunctioned back in December, hence the huge variation in the size of his ventricles. So, his best guess...the valve was broken.
Which means brain surgery to repair it. You've got to be kidding me! Commence tears!
"I mean he has to have surgery? Are you sure? I don't know what to do," I wailed.
He replies, "Look. It's my best guess. There is a lot going on and in six months we are going to wish we took care of it now. It's not super common to operate when a patient isn't showing shunt malfunction symptoms, but with Parker, we can't take many chances."
"So you would do it?" I ask.
He said, "Yes. I would do it. I can do it today even."
"What! No. NO. I cannot do this today. I don't even have a clean pair of underwear packed," I cried.
<Why that came out of my mouth I don't know. Moments you can't take back...>
He then said that he didn't want to wait long, but, if his Shunt Series x-rays came back normal we could wait a week. So, I agree and we go get his x-rays. These x-rays show the shunt and all of the tubing that goes down into his abdomen. Typically doctors can see if there is a kink or some level of disconnection.
They came back normal. Whew.
The doctor then says he is going to do all of the pre-op tests while we are there. So, I went on a mission through that entire hospital for x-rays, blood work and a physical. The highlight (I say this with complete and utter sarcasm) was probably getting a urine sample from a toddler who wears diapers. Like, are you kidding me? Wow. That was interesting. They taped this little contraption over his "man parts" and we waited.
And waited.
And waited.
Eight ounces of juice and 30 minutes later he tinkled like less than an ounce. What-ever! I say it counts! Peace!
Next thing I knew the doctor popped back in with a consent form. This is real life. When they hand you the consent form it's serious and it's happening. He went through all of the risks that I was unfortunately very aware of. One of them being a shunt infection...
I signed my name and that was it. Parker was scheduled for surgery.
At this point we had been in the hospital something like 6 hours. Everyone close to me was frantic and trying to help in any way they could, knowing I was there alone. I was really fine, though. Oddly enough I was okay. I had a couple meltdown moments, but overall, once I had a good cry, I was just hell bent on getting through those pre-op appointments, getting Parker lunch and changing his diaper. I needed to get home and talk this day over with Casey. Casey was aware of what had transpired and was also freaking out.
I cannot tell you how well Parker did. He is a scheduled child, almost to a fault. If you mess with his schedule, watch out! Well, he didn't even get lunch that day until 2PM and he is usually taking a nap during this time. He was such a trooper and his cooperation made it a lot easier for me to handle.
So with our day of surgery instructions in hand we were on our way into the world. We have never been in a world with an impending brain surgery date. Casey and I struggled all weekend with the outcome of that appointment. Immense guilt consumed him for not being there. No one wants to put their child through surgery, so of course we start pondering whether or not we were doing the right thing. It's so hard! He wasn't showing the traditional symptoms of a shunt malfunction.
The following Sunday some of my close friends and I had already registered to do a 5K Race that benefited the Children's Hospital. We went wearing our Hydro Blue shirts and dominated. While we were enjoying a couple celebratory "adult beverages" after the race a woman approached me.
She asks, "Which one of you is Parker and which one of you has Hydrocephalus?"
I look at her and reply, "Parker is actually my son and he has Hydrocephalus."
"No way. I have Hydrocephalus. I have had it since I was 6 months old. I got it from bacterial meningitis. I doctor here at this hospital," she said.
I immediately take full advantage of speaking to a woman who suffers from the same condition as my son.
"Can you feel you shunt?"
"How many surgeries have you had?"
"How do you know if you shunt isn't working?"
"How old are you?"
"What do you do for a living?"
This lovely woman answered every single one of my questions and helped me in more ways than she will ever know. In fact, her most recent surgery had been over a decade ago. She wasn't showing the typical shunt malfunction symptoms (just like Parker currently). Her mom just had a feeling something was off and sure enough, it was. She was a healthy, active and amazing young woman. Meeting her gave me so much hope and strength. Meeting her made any guilt I had about putting Parker through surgery again disappear. We were doing the right thing.
God sent her to me that day. Out of 1600 people she found me. Needless to say there were a couple tears of happiness from us that afternoon.
Monday, August 31, 2015
It's a Happy Hydro Awareness Month Kind of Day!
Did you know that September is Hydrocephalus Awareness Month? If not, now you do! If you are friends with my husband or I, surely you knew this because we blasted Facebook with every single Hydrocephalus Awareness tidbit out there. We are loud, we are proud, and we love to bring awareness to our friends and family!
Yes, yes, we are thoooose people. To say we are proud of our little miracle is an understatement!
I cannot believe this will be our second year raising awareness for a condition I didn't even know existed. At this point in the game we have a pretty good understanding of what Hydrocephalus is and what it means for our son. There are some aspects of his future that are undefined and the unknown does plague us. One thing I can tell you for absolute certain...we no longer let it define Parker. We carried this diagnosis around with heavy hearts for a long, long time. We spent countless hours in tears and worrying, even as recent as last month. The worry never goes away.
The articles we've read scared us greatly and cemented a tremendous amount of uncertainty in our lives for little Parker. Plus, Parker has been about 6 months behind in all areas of development since being diagnosed, so most of what we read was actually becoming reality. We've tried every intervention and specialist out there to help catch him up. This is a battle we still fight and I'd be lying if I said my heart wasn't a little bit heavy from time to time. The worst feeling in the world is watching your child struggle. Like many NICU and/or Hydro parents, I've had to endure that since day 1.
When reading facts about Hydrocephalus I am always shocked by how common and dangerous it is and how little attention it actually gets! Supporters are constantly rallying for research dollars because there haven't been any huge advancements with the treatment and detection of malfunctions with this condition. At the end of the day there is no cure and treatment is almost always brain surgery. Obviously this hits home a bit more for me, but more than anything, it scares me to think my son has a condition that no one with research dollars really knows about. Some people are given shunts and they are perfectly fine for 30+ years! I can only hope that is Parker's case. I am too well versed, though. I know that the reality is some people fight and fight hard and still lose their battle. Our children, before they learn to speak, suffer tremendous amounts of pain from headaches and disability challenges that will impact them the rest of their lives. The worst part, as parents we are helpless in the situation.
Because the month of September is dedicated to Hydrocephalus Awareness, it is a time of reflection for me.
What Parker has been through...
Where he's been...
Where he's going...
All are constant, lingering thoughts in my head. He is still too young to fully understand the condition that plagued him at just three months old. Every single time I go back to that moment in the ER tears sting my eyes. Even now as I type. The moment in time that stood still. The moment that literally changed everything, forever. Even by some miracle Parker's Hydrocephalus goes away, we will never ever forget the people we've become during this journey. My backbone is a lot stronger and my nerves a little weaker. Some how in all of this crazy hydro journey we've been riding, my smile lines are more defined. Maybe I'm just getting wrinkles because of age, but, I have seriously spent a lot of time smiling. This boy has brought so much happiness to my life and the kid is hilarious. I would like to contribute my newfound wrinkles to that. :-)
Since my last post I can confirm a couple things.
1. Parker is HAPPY.
2. Parker is HEALTHY (no ear infections, colds or flu *knock on wood).
3. Parker stayed home ALL summer with his family, enjoying every bit of it along the way.
4. Parker learned to WALK.
All of those things are clearly reason to celebrate, especially number one. For some reason, though, the thoughts of what he can't and should do still weight heavily on me. It's a feeling that I can't control. If you've been a mother or father in this position I'm sure you can relate. I feel guilty for it, too! I know he's happy, healthy and home, but...I want more. Selfish, maybe? Determined, yes!
It's taken some time for me to hit the keyboard again because we've had a roller coaster of appointments and "mishaps" for this child. I'm still not sure that I can portray what's happening, because honestly, I don't know. The uncertainty is KILLING us at this point. We hope to have a lot figured out this fall as far as next steps for Parker.
Long story short, at around 15 months, he seemed to have plateaued developmentally. At 18 months, other than the walking, he really wasn't doing anything he was "supposed" to be doing. We do early intervention programs in our home and he didn't score so well on the 18 month assessment. To say I was devastated was an understatement. I layed in my bed and cried...for a while. Then I remembered we had another appointment at the university hospital with the Neonatologist. Maybe Parker just had a bad day? Seriously you can't expect a toddler to perform at an A+ level on command.
My gut told me to slow my roll, though. Being home with him, I have had the amazing opportunity to play with him and watch him pretty much all day and night. What he was being tested on were things I knew he wasn't doing for me, either. Yes I know what's on those tests and what he should be doing at each stage because I study that up! In fact, it took me well over three months to teach him how to put a ball in a bucket. That sure wasn't on the test as a "good" check mark. I knew in my heart of hearts that something was wrong. All kids are different, absolutely, but Parker was just struggling.
So, second assessment, he scored exactly the same. Commence breakdown in the doctor's office!
She starts off by saying, "I love seeing Parker and I hope you will bring him by to visit with me. At this time I am going to refer you to the Center for Disability and Development. There isn't anything I can do and I'm seeing some red flags here."
Cue crying...!
"I'm so sorry. I just get so emotional over this," I cried.
The doctor hands me tissues and replies with, "Hey, it's okay. You need time to grieve. Believe me I see a lot and I know you are a good mom and I know you are doing everything you can and this is hard to hear."
I then went on to agree with her and even told her that during pregnancy I didn't even consume packaged lunch meat and took my vitamins! Never missed an appointment! Yep, fell right off that wagon again. She shook her head agreeing with me. God love her.
What a feeling of defeat. I cannot even begin to describe the instant panic and worry that consumed me in that moment. When you do everything right! Early intervention for over a year! So, the Neonatologist referred us to the Center for Disability and Development. I mean, what else can you do? We have to do whatever it takes to learn how to teach Parker. Clearly, we aren't teaching him the way he needs to be taught. It was like deja' vu marching through that hospital with snot and tears running down my face. I had a good cry and then it was off to eat two cinnamon rolls and Parker's left over chicken strips at Perkins.
So, we are continuing to deal with those emotions and our appointment is this fall. We are hoping and praying that at the end of it all, we at least have some diagnosis and/or tools to help him learn. He is also scheduled for a complete eye exam at the university at the same time because we think that maybe, just maybe, some of his struggle is because he can't see close up. Who knows! At least we can say we looked into it!
Then naturally the little stinker started having these little "seizure like spells" and losing balance more than usual during the month of July. They weren't full blown seizures, but more like, dazing off episodes. If you were unfortunate enough to witness him have one you know why panic struck me. He was also falling like a mad man. Balance is not always Parker's friend so that's why when he was falling for absolutely no reason I was worried. So after many conversations with his Neurologist he decided that he was no longer going to have these spells and snapped out of it. Thank you, God. We did not want to put him back on seizure medication.
Seizures and shunt malfunctions are always a worry of ours because last time he had his ventricles checked they were significantly bigger than they've ever been since his shunt was inserted. Our favorite Neurosurgeon is back at the university hospital after wrapping up a stint at the St. Louis Children's Hospital. We are going to meet with him in just under two weeks. So, we are hoping, hoping, hoping those ventricles are where they need to be at this point.
It seems that September and October will be months of closure for us! Hopefully!
So, other than the above mentioned, we really have had a great summer with Parker. He's gotten to do so many fun things and it's been beyond enjoyable to watch him have fun. He has really come into his own with a crazy personality that so many people love. His laugh in contagious and his smile just screams trouble! The love I have for this boy grows every single day and I don't even know how that's possible, but it happens!
Looking on the bright side, as I try to do, I do look forward to spreading Hydrocephalus Awareness and knowledge this month and wearing as much blue as physically possible! I'm sure my husband and I will be flooding Facebook with our Hydro Posts and you know what, I'm not even a little bit sorry! :-)
Yes, yes, we are thoooose people. To say we are proud of our little miracle is an understatement!
I cannot believe this will be our second year raising awareness for a condition I didn't even know existed. At this point in the game we have a pretty good understanding of what Hydrocephalus is and what it means for our son. There are some aspects of his future that are undefined and the unknown does plague us. One thing I can tell you for absolute certain...we no longer let it define Parker. We carried this diagnosis around with heavy hearts for a long, long time. We spent countless hours in tears and worrying, even as recent as last month. The worry never goes away.
The articles we've read scared us greatly and cemented a tremendous amount of uncertainty in our lives for little Parker. Plus, Parker has been about 6 months behind in all areas of development since being diagnosed, so most of what we read was actually becoming reality. We've tried every intervention and specialist out there to help catch him up. This is a battle we still fight and I'd be lying if I said my heart wasn't a little bit heavy from time to time. The worst feeling in the world is watching your child struggle. Like many NICU and/or Hydro parents, I've had to endure that since day 1.
When reading facts about Hydrocephalus I am always shocked by how common and dangerous it is and how little attention it actually gets! Supporters are constantly rallying for research dollars because there haven't been any huge advancements with the treatment and detection of malfunctions with this condition. At the end of the day there is no cure and treatment is almost always brain surgery. Obviously this hits home a bit more for me, but more than anything, it scares me to think my son has a condition that no one with research dollars really knows about. Some people are given shunts and they are perfectly fine for 30+ years! I can only hope that is Parker's case. I am too well versed, though. I know that the reality is some people fight and fight hard and still lose their battle. Our children, before they learn to speak, suffer tremendous amounts of pain from headaches and disability challenges that will impact them the rest of their lives. The worst part, as parents we are helpless in the situation.
Because the month of September is dedicated to Hydrocephalus Awareness, it is a time of reflection for me.
What Parker has been through...
Where he's been...
Where he's going...
All are constant, lingering thoughts in my head. He is still too young to fully understand the condition that plagued him at just three months old. Every single time I go back to that moment in the ER tears sting my eyes. Even now as I type. The moment in time that stood still. The moment that literally changed everything, forever. Even by some miracle Parker's Hydrocephalus goes away, we will never ever forget the people we've become during this journey. My backbone is a lot stronger and my nerves a little weaker. Some how in all of this crazy hydro journey we've been riding, my smile lines are more defined. Maybe I'm just getting wrinkles because of age, but, I have seriously spent a lot of time smiling. This boy has brought so much happiness to my life and the kid is hilarious. I would like to contribute my newfound wrinkles to that. :-)
Since my last post I can confirm a couple things.
1. Parker is HAPPY.
2. Parker is HEALTHY (no ear infections, colds or flu *knock on wood).
3. Parker stayed home ALL summer with his family, enjoying every bit of it along the way.
4. Parker learned to WALK.
All of those things are clearly reason to celebrate, especially number one. For some reason, though, the thoughts of what he can't and should do still weight heavily on me. It's a feeling that I can't control. If you've been a mother or father in this position I'm sure you can relate. I feel guilty for it, too! I know he's happy, healthy and home, but...I want more. Selfish, maybe? Determined, yes!
It's taken some time for me to hit the keyboard again because we've had a roller coaster of appointments and "mishaps" for this child. I'm still not sure that I can portray what's happening, because honestly, I don't know. The uncertainty is KILLING us at this point. We hope to have a lot figured out this fall as far as next steps for Parker.
Long story short, at around 15 months, he seemed to have plateaued developmentally. At 18 months, other than the walking, he really wasn't doing anything he was "supposed" to be doing. We do early intervention programs in our home and he didn't score so well on the 18 month assessment. To say I was devastated was an understatement. I layed in my bed and cried...for a while. Then I remembered we had another appointment at the university hospital with the Neonatologist. Maybe Parker just had a bad day? Seriously you can't expect a toddler to perform at an A+ level on command.
My gut told me to slow my roll, though. Being home with him, I have had the amazing opportunity to play with him and watch him pretty much all day and night. What he was being tested on were things I knew he wasn't doing for me, either. Yes I know what's on those tests and what he should be doing at each stage because I study that up! In fact, it took me well over three months to teach him how to put a ball in a bucket. That sure wasn't on the test as a "good" check mark. I knew in my heart of hearts that something was wrong. All kids are different, absolutely, but Parker was just struggling.
So, second assessment, he scored exactly the same. Commence breakdown in the doctor's office!
She starts off by saying, "I love seeing Parker and I hope you will bring him by to visit with me. At this time I am going to refer you to the Center for Disability and Development. There isn't anything I can do and I'm seeing some red flags here."
Cue crying...!
"I'm so sorry. I just get so emotional over this," I cried.
The doctor hands me tissues and replies with, "Hey, it's okay. You need time to grieve. Believe me I see a lot and I know you are a good mom and I know you are doing everything you can and this is hard to hear."
I then went on to agree with her and even told her that during pregnancy I didn't even consume packaged lunch meat and took my vitamins! Never missed an appointment! Yep, fell right off that wagon again. She shook her head agreeing with me. God love her.
What a feeling of defeat. I cannot even begin to describe the instant panic and worry that consumed me in that moment. When you do everything right! Early intervention for over a year! So, the Neonatologist referred us to the Center for Disability and Development. I mean, what else can you do? We have to do whatever it takes to learn how to teach Parker. Clearly, we aren't teaching him the way he needs to be taught. It was like deja' vu marching through that hospital with snot and tears running down my face. I had a good cry and then it was off to eat two cinnamon rolls and Parker's left over chicken strips at Perkins.
So, we are continuing to deal with those emotions and our appointment is this fall. We are hoping and praying that at the end of it all, we at least have some diagnosis and/or tools to help him learn. He is also scheduled for a complete eye exam at the university at the same time because we think that maybe, just maybe, some of his struggle is because he can't see close up. Who knows! At least we can say we looked into it!
Then naturally the little stinker started having these little "seizure like spells" and losing balance more than usual during the month of July. They weren't full blown seizures, but more like, dazing off episodes. If you were unfortunate enough to witness him have one you know why panic struck me. He was also falling like a mad man. Balance is not always Parker's friend so that's why when he was falling for absolutely no reason I was worried. So after many conversations with his Neurologist he decided that he was no longer going to have these spells and snapped out of it. Thank you, God. We did not want to put him back on seizure medication.
Seizures and shunt malfunctions are always a worry of ours because last time he had his ventricles checked they were significantly bigger than they've ever been since his shunt was inserted. Our favorite Neurosurgeon is back at the university hospital after wrapping up a stint at the St. Louis Children's Hospital. We are going to meet with him in just under two weeks. So, we are hoping, hoping, hoping those ventricles are where they need to be at this point.
It seems that September and October will be months of closure for us! Hopefully!
So, other than the above mentioned, we really have had a great summer with Parker. He's gotten to do so many fun things and it's been beyond enjoyable to watch him have fun. He has really come into his own with a crazy personality that so many people love. His laugh in contagious and his smile just screams trouble! The love I have for this boy grows every single day and I don't even know how that's possible, but it happens!
Looking on the bright side, as I try to do, I do look forward to spreading Hydrocephalus Awareness and knowledge this month and wearing as much blue as physically possible! I'm sure my husband and I will be flooding Facebook with our Hydro Posts and you know what, I'm not even a little bit sorry! :-)
Sunday, March 29, 2015
Therapy Schrarapy
Every week our therapy sessions go a little like this...
They ask, "Is he pulling himself up in his crib yet?"
"Nope."
Then as sure as the sky is blue they ask, "Is he able to get up from laying down?"
"Nope."
"So basically nothing has changed."
I reply, "Yep."
So, every week we endure therapy. Most sessions, Parker and I both end up crying. He cries because he's just mad and I cry because I feel horrible for putting him through it. It's frustrating putting him through this weekly and not seeing results. It's not his therapist's fault, it's not our fault and it's not his fault. I feel confident in blaming Hydrocephalus on this one.
"Gosh darn it! It's FREEZING outside and it's Spring."
Blame it on Hydrocephalus.
"I spilled my tea on the clean rug (uh hum Casey)."
Blame it on Hydrocephalus.
You all have my permission to blame what-ever you want on Hydrocephalus. It's pretty easy.
Parker was forced to a hospital bed during a very crucial time in his development. Then between healing from other brain surgeries at home, he didn't get the tummy time he needed. I think I counted over 8 weeks he didn't get tummy time, or even any time to explore floor play. So, at the end of the day, it all caught up and his physical development isn't really going so well.
As a parent we so badly want to see our child succeed. Things that come naturally to toddlers, do not come naturally to Parker. It seems like so much of what other kids just "do" we struggle with. Its excruciating to see him struggle at such a young age. We pray it's not a precedence for the rest of his life. It's pretty hard watching him cry and get angry because his mind wants to do something and his body just...can't.
At one therapy session I was in tears to the poor therapist. Honestly, it's sometimes too much to handle and I lose it.
"I just picture him sitting on this spaceship blanket watching TV never walking or doing ANYTHING, with the support of his boppy pillow, forever."
She replies, "That's not going to happen. He will crawl. He will walk."
So, the million dollar question is WHY won't he do anything?!?
At this point, they have said that they don't believe he has Cerebral Palsy or anything else physically debilitating. It's just a matter of catching his body up to his age. I mean really, 18 months is the 'red flag' age for walking. We still have three months before everyone goes into full on freak-out mode.
It's just hard to be patient and it's nearly impossible not to worry because one more long-term hospital stay will do so much harm for him developmentally. Also, we know that there was a level of brain damage at birth. Is this what the damage looks like? Who knows. Needless to say, it's frustrating. When we were told he had brain damage we were always assuming it was going to be intellectual damage, not so much physical. You know what they say about assuming...
I've never wanted a toddler to roam my house and get into trouble like I do right now! It would certainly ease my mind. That being said, Mr. Parker is very brave in his walker. He roams the house like he owns the place. Casey caught him "running and gliding" through our kitchen.
"Run...Run...Pick Feet Up and GLIDE"
It's pretty funny to see him do it. I would compare it to adults running with shopping carts and jumping on for a ride. Please, do not even pretend like you've never been there done that. We all have so I know you know exactly what I'm talking about.
In Parker's most recent therapy session we had a visit with two therapists. This usually happens once a month and I can't get a wink of sleep the night before. This is where he is assessed and "rated". Well, for the first time EVER Parker rated just below the 30% developmental delay. We are never below the benchmark and it was seriously a cause for celebration. Basically, if you rate below the 30% delay, therapy isn't always necessary. In fact, the therapist told me had this been his first ever visit to Parker, he wouldn't recommend therapy at all.
Say Whaaat?!?
Of course knowing what we all know, we are continuing full force. Sigh.
I would be lying to you if I said we tend to focus more on what he "should" be doing rather than celebrating what he "is" doing. Which, I hate to admit, but in reflection, I realize it to be true.
So, let's take a moment to celebrate what this rock star has accomplished.
1. Sitting without the support of his Boppy.
2. Rolling (won't roll on shunt side, but we don't care, who would roll on that anyway... no one).
3. Pulling himself up on the couch (with bribery-mostly paper he can rip and be naughty...no shame in my game).
4. Walking with our assistance.
5. Rolling around like a bat out of hell in his walker.
6. Standing for a couple seconds unassisted.
7. Walking the couch.
See, that's already over 5 things just off the top of my head. What am I complaining about?
He still has 6 days to learn how to walk for Easter Egg Hunts. :-)
They ask, "Is he pulling himself up in his crib yet?"
"Nope."
Then as sure as the sky is blue they ask, "Is he able to get up from laying down?"
"Nope."
"So basically nothing has changed."
I reply, "Yep."
So, every week we endure therapy. Most sessions, Parker and I both end up crying. He cries because he's just mad and I cry because I feel horrible for putting him through it. It's frustrating putting him through this weekly and not seeing results. It's not his therapist's fault, it's not our fault and it's not his fault. I feel confident in blaming Hydrocephalus on this one.
"Gosh darn it! It's FREEZING outside and it's Spring."
Blame it on Hydrocephalus.
"I spilled my tea on the clean rug (uh hum Casey)."
Blame it on Hydrocephalus.
You all have my permission to blame what-ever you want on Hydrocephalus. It's pretty easy.
Parker was forced to a hospital bed during a very crucial time in his development. Then between healing from other brain surgeries at home, he didn't get the tummy time he needed. I think I counted over 8 weeks he didn't get tummy time, or even any time to explore floor play. So, at the end of the day, it all caught up and his physical development isn't really going so well.
As a parent we so badly want to see our child succeed. Things that come naturally to toddlers, do not come naturally to Parker. It seems like so much of what other kids just "do" we struggle with. Its excruciating to see him struggle at such a young age. We pray it's not a precedence for the rest of his life. It's pretty hard watching him cry and get angry because his mind wants to do something and his body just...can't.
At one therapy session I was in tears to the poor therapist. Honestly, it's sometimes too much to handle and I lose it.
"I just picture him sitting on this spaceship blanket watching TV never walking or doing ANYTHING, with the support of his boppy pillow, forever."
She replies, "That's not going to happen. He will crawl. He will walk."
So, the million dollar question is WHY won't he do anything?!?
At this point, they have said that they don't believe he has Cerebral Palsy or anything else physically debilitating. It's just a matter of catching his body up to his age. I mean really, 18 months is the 'red flag' age for walking. We still have three months before everyone goes into full on freak-out mode.
It's just hard to be patient and it's nearly impossible not to worry because one more long-term hospital stay will do so much harm for him developmentally. Also, we know that there was a level of brain damage at birth. Is this what the damage looks like? Who knows. Needless to say, it's frustrating. When we were told he had brain damage we were always assuming it was going to be intellectual damage, not so much physical. You know what they say about assuming...
I've never wanted a toddler to roam my house and get into trouble like I do right now! It would certainly ease my mind. That being said, Mr. Parker is very brave in his walker. He roams the house like he owns the place. Casey caught him "running and gliding" through our kitchen.
"Run...Run...Pick Feet Up and GLIDE"
It's pretty funny to see him do it. I would compare it to adults running with shopping carts and jumping on for a ride. Please, do not even pretend like you've never been there done that. We all have so I know you know exactly what I'm talking about.
In Parker's most recent therapy session we had a visit with two therapists. This usually happens once a month and I can't get a wink of sleep the night before. This is where he is assessed and "rated". Well, for the first time EVER Parker rated just below the 30% developmental delay. We are never below the benchmark and it was seriously a cause for celebration. Basically, if you rate below the 30% delay, therapy isn't always necessary. In fact, the therapist told me had this been his first ever visit to Parker, he wouldn't recommend therapy at all.
Say Whaaat?!?
Of course knowing what we all know, we are continuing full force. Sigh.
I would be lying to you if I said we tend to focus more on what he "should" be doing rather than celebrating what he "is" doing. Which, I hate to admit, but in reflection, I realize it to be true.
So, let's take a moment to celebrate what this rock star has accomplished.
1. Sitting without the support of his Boppy.
2. Rolling (won't roll on shunt side, but we don't care, who would roll on that anyway... no one).
3. Pulling himself up on the couch (with bribery-mostly paper he can rip and be naughty...no shame in my game).
4. Walking with our assistance.
5. Rolling around like a bat out of hell in his walker.
6. Standing for a couple seconds unassisted.
7. Walking the couch.
See, that's already over 5 things just off the top of my head. What am I complaining about?
He still has 6 days to learn how to walk for Easter Egg Hunts. :-)
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