Tag Archives: Hydrocephalus

Snowflakes

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The question of prognosis invariably is one of the first things a newly diagnosed family considers. It is difficult to hear there is a complication with a fetal brain. The unknowns are intense and agonizing. Getting caught up in the what-ifs can be all-consuming.

Somewhere around the 27th week of gestation, we were unable to accurately measure the ventricles in Parker’s brain. Ultrasound after ultrasound, we watched the ventricles increase exponentially.  With each Perinatology visit, we would sit white knuckled in the waiting area praying for a ventricle stabilization or a decrease. With each visit, we watched Parker’s fluid increase, and her brain compressed until it was a fine sliver.

It was at that time that I felt peace. I know it sounds completely absurd. But, it is a fact. I realized there was very little I could control. I was unable to stop the increasing head circumference. I was unable to stop the fluid. But, I could control how I reacted to the terrible situation. I could relish in the fact I was pregnant. Many families struggle with infertility. However, the miracle of a child was growing inside me. That fact should translate into joy and celebration. The worry and fear lifted.

This brings me back to prognosis. Hindsight is a wonderful thing. While I had abandoned the anguish, I wanted to prepare. The ultimate outcome of a person diagnosed with congenital hydrocephalus varies wildly. I have likened our children to snowflakes. Each are very beautiful. And, every “snowflake” is unique and precious. I have yet to find two children who have matching conditions with a matching outcome. Hydrocephalus comes with its own complicated web of intricacies. There is no way to predict what may become a challenge with one child and not with another.

Appreciating our snowflakes for their exceptional gifts is of the utmost importance. My goal is to strive to never let a moment pass that I’m not thankful for the wonderful child I have been given. She is truly my blessing.

 

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Mat Man

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The Summer has been rolling along way too fast. I can’t believe it’s already August and Parker will soon be back in school. We decided it was best for her to take another year in Pre-K to fine tune her fine motor skills and gain some maturity. Last year was a good year for her to gain new skills but she was literally the youngest child in the entire school of 200 Pre-K children. I know this is something even parents of typical children who have August birthdays struggle with. And, my due date was actually Oct 15th, so she really wasn’t supposed to be here just yet.
Early in the semester 2012, we started Parker on an IEP for Occupational Therapy for assistance with fine motor skills. This has been the first time since she was one that she wasn’t developmentally with her peers. Her fine motor skills are delayed. Over the school year, we had seen minimal progress with her writing/drawing specifically. She did improve with cutting with scissors. But, I’m so eager for her to learn how to write her name, which is a skill that should be mastered by the end of Pre-K.
Parker has little interest in drawing. I’m not sure if its because she isn’t very good at it or why. But, this summer she has had one on one OT at Special Care and I love the results! In just several weeks, she drew this

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I’ve never seen her draw a figure that actually looks like a person.

I’m hopeful this momentum continues into the school year.

Merry, merry!

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Parker had a scheduled MRI on 12/18 as a follow up for her revision in May and the 2 episodes she has had since. It was a challenge getting her to cooperate. She is already anxious about doctors offices and hospitals. Her litmus test is to ask if she has to lay down. If she does, to her it means a significant procedure.

Since the MRI required sedation, she couldn’t eat 8 hours before the 12 pm check-in time. She could have 4oz of clear liquids before 10am. Surprisingly, she really didn’t complain about not eating.

Once we got to the hospital and got checked in, Parker became extremely unhappy and aware of what was going on. We had talked about her getting a MRI for several days leading up and her biggest question was whether she had to lay down. She made herself vomit several times in the waiting room before we were called back. Once the Nurse came to get us, we made one more stop at the bathroom on the way back for her to vomit again. It’s getting so much harder as she is older and aware.

The actual MRI went off without any other problems. And, even better the results came back very positive. Parker’s ventricles are larger than they were before her revision, which is what we wanted. So, for now it doesn’t look like there are any scheduled surgeries in our path.

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Brain Scans, fluff and time

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When I was pregnant with Parker, we had the most awesome High Risk OB, Dr. Mirabile. He is unbelievably frank and at one time told us Parker would resemble an alien (very little body and very big head) at birth. Some might be offended, but we were fine with his honesty. He wasn’t far off. I’ve said tongue in cheek that Parker’s head shape went from alien to conehead and it now has a Klingon ridge.

The reason it was so large at birth was because of all of the cerebral spinal fluid accumulation in her head. It had no where to go because of the blockage between her 3rd & 4th ventricles. Because of this, her brain was severely compressed. It was a very fine sliver. I can say those words, but until you see the pictures of the dark grey fluid and lighter grey brain, you don’t truly grasp how little brain “fluff” there really wasn’t at birth.

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The day after Parker was born she got a shunt that allowed the fluid to drain into her abdomen. Over time, most of the brain came back. However, there was a large fluid filled cystic structure (Schizencephaly) detected on scans at 6 months that basically took up space where her brain had atrophied. I saw the huge interhemispheric cystic structure, and it scared me. I googled again as one does when they get diagnostics. I prayed over time, the fluffing would continue and the cyst would dissipate. 

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It isn’t uncommon to have these large fluid spaces. I was pleased she had brain matter. And, I have always been happy with any accomplishment.

Time passed and earlier this year Parker started having pain episodes. She hadn’t had imaging in quite some time. So, once the pain became horrendous, we went to the ER. To my shock, the cystic structure was exactly the same as her 6 month mri.

We hypothesize Parker is having intermittent over-production malfunction of her shunt. Basically, your head has fluid, skull & brain. During her pain episodes, the shunt works too well and the fluid is over-draining and the brain cavity becomes dry, if you will. This omits one main component of the trifecta. Hence, Parker will scream, cry, plead for comfort, etc. As a parent, I pray no one will ever have to go through this.

So, over time Parkers’ skull plates fused over-lapping. Her brain grew at a rate faster than her skull. The remedy is cranial vault reconstruction. This would be by far the most serious, extensive surgery she would probably ever endure. I’m praying the skull will soon compensate and grow. 

Balance. 

Defeated

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I feel defeated, deflated, disappointed, sad, upset, etc.

In May, Parker had a shunt revision (brain surgery). It seems like it took a long time to get there. I didn’t talk a lot about how we got to that point because I try to be positive. It was a rough road. I know we are very blessed when it comes to Parker’s health. I am in contact with hundreds of families and many of them struggle with the health of their children with Hydro. It isn’t uncommon for a child to have many shunt surgeries. Parker has only had two in her 4 years. Our Godson had 8 brain surgeries his first year of life. This isn’t unusual. 50% of shunts fail. It is a sad fact.

Last Fall, we thought Parker was having seizures. It turns out she was having intermittent over-drainage of her shunt. The malfunction started every 6 weeks then over time happened every couple of days. The pain is excruciating.

When Parker had her revision in May, our Neurosurgeon suspected her skull was too small for her brain and that was ultimately the cause of her episodes. He surmised the revision was only a band-aid and ultimately we would need to do Cranial Vault Reconstruction to make her skull bigger. It is a 7-8 hour procedure, and I’m totally scared.

Tonight, Parker had an episode. Should these persist, CVR is in our path. God bless my little pumpkin.

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Google me?

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Through the powers that be, I can tell how you (yes, you) arrived here (yes, here). WordPress gives me a little synopsis of the different webpages people click on to find my page. I imagine if you were a serious blogger you would really need this information. I just find it fascinating.

Today, someone searched for “Hydrocephalus stem cell infusion” and found this page. It made me wonder about the power of google. So, I typed the same thing. It brought up a newspaper article we did about a year ago.

Enjoy

http://m.newsok.com/yukon-parents-credit-umbilical-cord-blood-infusion-with-helping-daughter/article/3598717/?page=1

The Revision

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Ugh. I’m not even sure where to begin.

Parker is awesome. Most of the time she is extremely healthy. From time to time we have a pesky little seizure, but for the most part, things are great….

Last Fall, there were several episodes where Parker would vomit out of the blue and she would need to nap for around 45 minutes or so. We discussed this with Neurology and thought they were simple partial seizures, so we her increased medication. These episodes began to increase in frequency in January. She wasn’t having a typical shunt malfunction symptom, but I was still a little leery. I took her to the ER to have the shunt checked, just in case. It was fine.

Weeks continued and the episodes got worse. They were longer in duration and began to increase in frequency. Our Neurosurgeon wanted us to try the non-surgical path 1st as he thought she was having migraines. I felt otherwise, but was okay with not wanting to rush to surgery.

However, we had to try 3 different migraine meds over 4 months. Her symptoms were AWFUL. Parker would scream in pain for 2-3 hours every 2-3 days. My heart knew this was not a migraine. But, we had to prove this to the NSG.

Finally, on May 9, 2012, Parker got a shunt revision. She hasn’t had an episode since.

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