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...

 

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!

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.

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! :-)

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. :-)

365 Days to Forever

I'M BACK! Hydro Mommyhood was definitely on vacation. Vacation is over. Casey told me that I had to start pulling my weight in writing again. :-) First, let me start off by saying how much I missed everyone and all the feedback you give me! During my most difficult times in Parker's journey, you all helped me more than you know. Plus, this blog has helped many families through their Hydro Journeys and gained a tremendous amount of awareness for the condition, and for that I am super grateful. Honestly, I can't believe it's taken me this long to get back to the keyboard. There have been many times in the past couple months where I could have certainly used the therapy of writing.

This time of year has extreme significance to us. Exactly one year ago, today, our lives changed forever. Parker was diagnosed with Hydrocephalus at about 11PM on March 18, 2014. I will never, ever, forget that day as long as I live.

If you have followed my blog you know that I already knew he had it merely by mother's intuition and research. It was one thing to suspect it, but it was a complete shock to actually have my worst fears confirmed in that tiny ER exam room. I immediately handed Parker to Casey and I excused myself. Thank goodness the bathroom was right next door because the sudden urge to get sick overwhelmed me. I remember not being able to see my reflection in the mirror because I was crying so hard. Thinking back on that moment, I wish I could forget everything I was feeling, but I can't. The fear and anxiety that plagued me at that moment, has continued to plague me all these months.

That was it. In a 5 minute conversation our lives changed forever. I remember the doctor said, "I am so sorry that this has happened."

There were no words from us. Just complete heartbreak. As you may remember, Parker had his first brain surgery the following morning, just shy of being 3 months old. The days, weeks and months to follow made up some of the worst and somehow best moments in my entire life.

Worst: My baby had brain surgery 3 TIMES in one month. My heart stopped every time he was on that operating room table. We could not hold Parker for over THREE WEEKS.

Best: My baby made eye contact with me! He LOOKED at me for the first time and really saw me. Tears sting my eyes when I relive that moment right after his first surgery. Then there was the moment when I held him for the first time after not being able to hold him for weeks. It was as if I was holding him for the first time after he was born...only better.

From that moment on I vowed to never take a single moment with him for granted. To this day, I pick him up and kiss him and love him EVERY chance I get. This child is smothered in kisses every day. My faith was tested time and time again, yet somehow, God showed me his support when I least expected it and often in ways I didn't think possible, right at about the time I was on empty.

I would love to tell all of you that after our initial "bump in the road" things got easier. They didn't. Our challenges and fears have probably quadrupled since we've been home. It's a new kind of bump in the road in which we find ourselves completely responsible for. There have been missed milestones, more tests and doctor appointments, and horrible therapy sessions. The reality of the situation is...Hydrocephalus sucks, but it's our reality, which makes it suck even more because it's not going away.

Being a parent has got to be, hands down, the scariest job on earth.  I am sure anyone can agree with me on that. You are in charge of this tiny little being until they aren't tiny anymore. Soon they eat by themselves, wipe their own tushies, talk back, graduate high school and hopefully move on to be respectful, law abiding citizens (right, Dad?). Well somewhere in between them being tiny and wiping their own tushies is where we are with Parker.

Next week he will be 15 months old. So far, we have mastered army crawling and sitting. Obviously most children his age are running circles around him by foot or by hands and knees. This is where things get tricky and heartbreaking for us...Parker seems to be a normal functioning 15 month old mentally, physically he is still incredibly behind. No matter what we do, he just can't advance physically. It. Breaks. My. Heart.

It's gotten that it affects me so much that I can't handle Facebook. I damn near cried at Monkey Joe's because I realized that Parker was the biggest, non-mobile, child there.

"How old is your little guy?"

I reply, "He'll be 15 months next week."

"Oh."

Cue awkward silence.

Yeah. OH. Believe me lady, it's confusing to me, too. I don't feel like I owe complete strangers an explanation as to why Parker is just sitting. When I am confronted with situations like that, which has happened MANY times, I often want to have verbal diarrhea and tell them everything he has been through. I feel like I have to tell them.

"Stop judging me Judgy Judgerson!"

"Yes we call that battery looking contraption on the back of his head a SHUNT! He needs it to survive!"

Turns out, Hydrocephalus isn't nearly as exciting to most parents as it is to Casey and I. So, I do resist the urge to get out my phone and show parents diagrams of shunts and how they work.  I just take it and vent later. At the end of the day, I am my own biggest judge. It's a battle I fight with myself often. She probably had lots of questions, but more than likely, not judging me. I was judging me. Judging myself is like a fulltime job these days.

Am I doing this right? Am I making the right choices? What else could I be doing?

Those questions will keep you up all night! Lately, it's been plaguing Casey and I as we reach these important milestones in Parker's life. We just want him to have an easy toddlerhood because his infancy was everything but easy.

You are probably asking yourselves, "Why do they judge themselves so harshly? " I wish I knew why.  Human nature I suppose. I think any good parent, at one time or another, questions their ability.

In moments like this, where I look back and reflect on how awful life was this time last year, I realize it's not that bad. Parker is healthy, happy, AAADORABLE, and minus the slight hydro flare-up a couple weeks ago, is doing relatively well.

I must ask myself a very important question, is it really that bad?

Well...the honest answer is, no. It's not that bad. Put on your big girl pants and buck up. He is happy, healthy and hasn't had a surgery since last April. It's just easier to see the bad things and place blame on yourself, rather than on a condition you can't yell at.

Our biggest challenges this past year have been patience, faith and perseverance. It's hard to keep up on those things when you aren't winning battles. We are, however, winning the biggest battle of all and that is keeping Parker happy. Overall, he is a genuinely happy guy! His smile is contagious and his strength inspires me every day. Even when he was hospitalized last month he still hammed it up and somehow reassured me everything was okay. How he does that, I don't know. He has a gift that I can't even understand or put into words yet.

I cannot wait to see what he does with it.

In the mean time I hope to be able to dedicate more time to my hobby, writing. I have lots of funny stories that involve pooping, hospital sassiness, and more! Who doesn't love a good poop story?