Beautiful Baby Blue

The boy will be alright

Posted on October 31, 2011 by Anne

The low point for me was January 2011. At every other point in our journey, there was always a light at the end of the tunnel that kept me going. Something to look forward to. Something to hope for. In January 2011, the light disappeared and I was surrounded by nothing but pitch black.

We’d been working for months to figure out what was causing Beautiful Boy Blue’s extreme headaches, severe mood swings, violence and intermittent slides in his speech and motor skills. In December 2010, much to our relief, an MRI ruled out another build up of CSF fluid in his brain. But, if wasn’t that, what was it? No one knew.

Our pediatrician recommended several neurologists in different specialties. Except for the epilepsy specialist, the wait was several months. We met with him and he quickly ruled out epilepsy which was confirmed with with an EEG. He also told us that he knew what the problem was, it was intermittent CSF flow issues and the way to solve it was a long-term regimen of prednisone which would decrease inflammation and increase CSF flow. It was not an option we liked. Prednisone, especially long-term, would cause as many problems as it solved. We needed a second opinion. The earliest we could get one was in May. Then, grasping for straws, my husband contacted the Naval hospital in San Diego and we learned they had several pediatric neurologists. They could get us in in a few weeks. We made the appointment and headed to San Diego.

It was a nightmare. At first, we were happy when the neurologist told us he absolutely did not believe there was any evidence of a CSF flow issue and putting our son on prednisone was not something he would recommend. Then, he very calmly and carefully told us that Chiari Malformation diagnoses are now a dime a dozen thanks to the widespread use of MRIs. And, simply having a Chiari Malformation means nothing. Every one of CB’s symptoms could have been easily explained by something else. What else, he didn’t say. He saw no evidence the Chiari Decompression was even necessary and he was surprised Dr. Krieger performed the surgery. But, here we were and there was obviously a brain injury if not brain damage. He was very sorry, there was nothing he could do for us. But, he knew a behavioralist, Dr. Jerry White, who might be able to help us.

That was absolutely the last thing two parents who were already beating themselves up over our original decision needed to hear.

We met with Dr. White and his assessment was slightly less pessimistic but nonetheless nebulous.

We went back to our hotel in virtual silence. Later that afternoon, while my husband was doing some work, I took the boys to the park. It was filled with kids a year or two older than CB. Initially, he ran around and played by himself. But, then he wanted to join the other kids. He ran up to one of them and smiled his gorgeous smile.

“Hi! Can I play with you? Can I play with you? Can I play with you?” His echolalia , another recent and progressively worsening problem for him, was in full swing.

The boys and girls ignored him, not sure what to do with a kid who was repeating the same question over and over. He tried again. This time, the queen bee was annoyed with him. Clearly aware of this but with no idea why she was angry, he began repeating, “I’m sorry. I’m sorry. I’m sorry.”

This only infuriated the queen bee more.

“Shut up!”

Every time, he repeated “I’m sorry” she yelled “shut up!”.

Finally, completely disgusted, she yelled as loud as she could, “You’re a freak! Go away freak!”

I grabbed my sons and left. The next two days, my son constantly asked, “Mommy, what’s a freak?”

It never occurred to me until that incident that children so young wouldn’t welcome my smiley, happy, loving, outgoing son. I had no concept he could be so completely, totally, ostracized by his peers. I was devastated. And angry…no, livid.

At home, I told his physical therapist, occupational therapist and speech pathologist what happened. Although they all assured me it was a temporary setback and an extraordinarily rude girl, it was easy to see the incident bothered them. They all assured me that skills for peer acceptance was something we’d work toward.

I felt like I had no where to go. No one could tell me what was wrong with my son. No one could tell me how to make it better. No one would tell me why he suddenly got worse again or if, once we got him better, it would happen again. And, though we had started to finally make some progress with his therapy, what did it matter if he was going to be treated so cruelly and rejected by his peers? I had been treading water for so long and I suddenly had no energy left to continue and there was no life boat in sight. I had no idea how I was going to slog through years and years of this. It was overwhelming just to think about it let alone to try to come up with a plan.

So, I just continued doing what I’d been doing and time passed. Little by little optimism returned. CB started preschool and was accepted by his peers. He built friendships. His repeating started to become more intermittent instead of constant. His balance problems got better. His headaches became less frequent and less severe and eventually went away. His violence went away. He finally got in to see some other neurologists who had seen similar brain injury but with different causes. They were able to give us some answers.

Flash forward six months to July 2011. We were back in San Diego for a follow-up meeting with Dr. White, the behavioralist, and a little vacation. The meeting with Dr. White could not have been better. He was thrilled with Beautiful Boy Blue’s progress. He said everything he saw indicated there was no brain damage, only injury. And, the brain appeared to be healing just fine. He even recommended reducing most of CB’s therapy and letting him spend more time just being a boy instead of “being therapized.” He assured us that CB is headed for a wonderful, normal life. We were over-the-moon thrilled.

Then, Dr. White paused and looked each of us in the eyes. He said he knew what would have happened to our son without the surgery. Without the Chiari Decompression surgery. He’d seen kids who didn’t have the surgery. He’d seen the damage. Permanent damage. He wanted to assure us that we’d made the right decision. All along the way, we’d made the right decisions. We’d been good advocates for Beautiful Boy Blue. We’d given him the opportunity for a great life. He just wanted us to know.

I’d never heard anything like that from a doctor before. And, probably never will again. I don’t know if he knew what the other doctor said to us or if he just wanted us to know. Either way, it was nice to hear. It lifted a weight off my shoulder I didn’t even realize was there.

Later that afternoon, my husband and I sat on the beach feeling pretty good about life as we watched our boys run around and the baby slept on my shoulder. The previous day, CB met some older kids and briefly played with them. As we were watching CB invent a game with his football, a herd of children approached. I realized it was many of the same kids from the day before but in a much larger group. As they approached, one of the girls yelled,”it’s CB!” and the horde enveloped my son and ran off down the beach. He played with them for 2 hours before I had to break him away for dinner. Much of that time, he was the leader, and main instigator of the group.

As my husband and I watched, my husband looked at me and said, “We’ve got nothing to worry about.” It was then that I knew, the boy was going to be alright. Better than alright. He was going to be great. And, at some point in the future, I’ll look back at this time and wonder how I did it. How we all made it though the rough spots and days with the bleak future. And, I’ll be so very, very glad I did. Because, it will all be worth it.

Words aren’t enough

Posted on October 22, 2011 by Anne

There are many people over the last three years who helped us out and to whom we owe tremendous debts of gratitude. I have talked about some of them in previous posts and will talk about others in the future. But, in all of the people who made us the luckiest people on the planet and helped get CB to where he is today, there is one who stands out – my brother.

For people who’ve known me for a long time, this is surprising. Not that my brother isn’t a great guy. Quite the contrary. He’s one of the most universally popular people I know. He’s funny, street smart and charismatic. And, we are complete opposites. If the world was black and white, I’d see everything in black and he’d see everything in white. And, as with any family, there is a lot of baggage. We went a couple of years without speaking except via other family members. Not out of animosity but out of lack of common ground.

Around the time I got married, things began to change. And, when CB was born, we both made efforts to build a relationship. My brother was living in China so it wasn’t easy. He came back to the U.S. for a visit and stayed with us briefly. He and Beautiful Boy Blue hit it off. Probably because they are so much alike. A few months later when we learned CB needed brain surgery, my brother was the first the volunteer. He offered to pull the third shift at the hospital so my husband and I could have some time out of the hospital.

It is impossible to explain the gift he gave us. In time away from the hospital. In time with my husband to absorb everything that was going on. In helping us get the best possible care for our son. After the first nightmare night in the hospital, my brother kindly kicked me out and took over the night shift for the rest of our time at CHLA. He immediately, and intentionally, became the good cop to my bad cop. Cops use this because it works. The good cop makes friends and disarms the targets and uses the bad cop as the threat. And, when it’s done well the people are none the wiser.

I’m pretty sure the people at CHLA never figured it out. He flirted with the nurses and stroked the egos of the doctors. He complimented them. He told them that he, as much as anyone, knows what a complete, overbearing bitch I am. After all, he’d point out, I’d left him in the hospital by himself during the dreaded 11 PM to 7 AM time so I could go sleep in a comfortable bed in my hotel. He very calmly and convincingly claimed he didn’t even know how to change diapers. And, if anything happened to CB while he was on duty…well, it would be really bad for my brother’s anatomy.

It worked. The nurses fell in love with him and were completely captivated by him. They were in the room constantly taking care of our son. The first time they got the medication schedule right was on my brother’s shift. It worked for the day shift, too. As a result of being the bad cop they didn’t like me that much which I didn’t care about. But they also didn’t want to see the complete and total freak out that my brother had assured everyone would happen if they messed up.

It was 100% planned. And, I never would have thought to do it. My brother is a lot smarter than me, both in actual intelligence and street smarts. We all knew after the first 24 horrendous hours that something had to change. My brother was the one that figured out the good cop/bad cop routine would be perfect in the hospital setting. And, he was right.

After we left the hospital, my brother kept the overnight shift at home until CB was sleeping through the night.

You can’t choose your family. And, in the grand lottery of life, I won with my brother. Not many siblings would volunteer to sleep in a hospital to take care of a nine-month-old who just had brain surgery. It takes an amazing person to do that. It takes an even more amazing person to do it twice, because the second time, you know exactly what you’re getting into. Yet, when CB got chemical meningitis and had to go back to CHLA, my brother drove 6 hours across the desert with only enough notice to pack a small bag to resume his duty as good cop/night guy.

It goes without saying that my relationship with my brother changed dramatically as a result of his selfless consideration and compassion. It is an understatement to say that everything would have been incrementally more difficult if my brother had not been there. I honestly don’t know how we would have done it. And, there is absolutely no way we will ever be able to repay him. There are no words to thank him. No way to express our complete and utter gratitude. I can just be very, very thankful that he’s my brother.

My brother and CB after one of the night shifts

Posted in Advice for Chiari patients and parents, Chiari Surgery/CHLA Surgical Complications, Childrens' Hospital L.A. (CHLA) Experience, Our medical odyssey, Post-Chiari Decompression surgery complications, Random blogs that don't fit in other categories | 2 Comments

Not equal to their reputation

Posted on October 11, 2011 by Anne

In January 2010, after we got the phone call from our pediatrician’s office telling us that we needed to take CB to Children’s Hospital L.A. immediately because there was something wrong on the CT, I called our pediatric neurosurgeon’s (Dr. Krieger) office. I wanted an urgent appointment with Dr. Krieger. Instead, the receptionist told me the fastest and best way to see Dr. Krieger was to go to the CHLA emergency department. Once we got there, Dr. Krieger would look at the CT and examine our son. On this promise, my husband got in the car and headed to CHLA.

When he got there, my husband told everyone who would listen that we needed to see Dr. Krieger for a head injury in a previous brain surgery patient. And, everyone he told told him that there are procedures that must be followed and that neurosurgery would be notified at the appropriate time. Since he was getting the run around per usual at CHLA, I called Dr. Krieger’s office and was assured that Dr. Krieger would be there as soon as he could.

He never showed up.

Instead, some junior resident in emergency medicine examined CB and then informed my husband that neurosurgery attending physicians NEVER go to the ED for any patient for any reason. Instead, because my son was a previous neurosugery patient, we were getting a fellow who would be over as soon as he could as he was currently in surgery. A fellow is a doctor who has completed his residency and is either doing additional research and studies or is waiting for a job. It wasn’t an attending but at least it wasn’t a resident. My husband and Beautiful Boy Blue waited and waited…and waited…and waited.

Finally Dr. Jesse Winer showed up and introduced himself as the neurosurgical fellow. He walked right past CB and spent a couple of minutes looking at the CT images, with his back to my husband he announced there was nothing on the CT that shouldn’t be there, then turned and chastised my husband for wasting his time by bringing in a kid that has nothing wrong with him. Then he left. He never once even looked in CB’s direction let alone examined him.

By this time, it was past 5 and Dr. Krieger’s office was closed so we couldn’t get in touch with anyone. My husband left CHLA and fumed all the way back to our house; which, with rush hour traffic was more than four hours. He wasn’t sure who to be most angry at for wasting his time. On the one hand, a doctor at what is supposed to be one of the best children’s hospitals in the country said there was nothing abnormal. So he was angry at our pediatrician. On the other hand, Dr. Winer didn’t spend enough time in any portion of the “exam” to make my husband in any way comfortable that the diagnosis was even correct. So he was also angry at Dr. Winer. He was also furious at Dr. Krieger’s office for assuring us multiple times that he would examine our son when it was obvious they knew he had no intention of ever doing so.

The next morning, I called our pediatrician, Dr. Robinson. He told me very politely that he didn’t know Dr. Winer. Knew nothing of his reputation. But Dr. Robinson did know the radiologist that read the CT and if that radiologist said there was something wrong, there was something wrong. In short, get some more opinions.

Dr. Robinson seemed to know, or at least know of, everyone who was anyone in pediatric medicine in the L.A. area. Spurred by Dr. Robinson’s statement that he knew nothing about Dr. Jesse Winer, I did some research. Turned out, he was a first year resident not a fellow. They’d lied to us…again. So, a first-year resident with virtually no experience who spent less than 5 minutes in the room told us there is nothing wrong without even examining our son. Yes, we were getting a second opinion. And, we were finally done with Dr. Krieger and CHLA.

Posted in American Medical System, Brain Surgery #2, Childrens' Hospital L.A. (CHLA) Experience, Our medical odyssey, Pseudomeningcele and Cyst Diagnosis and Surgery | Tagged brain damage from cyst, children's hospital l.a., Children's hospital Los Angeles, chla, Dr. Jesse Winer, dr. mark krieger, neurological problem, pediatric brain surgery | 2 Comments

It’s all in the details

Posted on October 2, 2011 by Anne

In hindsight, I should have known the surgical recovery from the Chiari decompression was going to go to hell in a hand basket quickly. CHLA didn’t even bother with the minor detail of not ripping my son’s skin off when they removed the surgical tape.

When they brought me to the recovery area, the first thing I saw was my son’s face covered in lacerations where the tape held the tubes and mask on his face. You’d think that when they ripped the first piece of tape off and saw that it took my son’s skin with it, they would have used adhesive remover to remove the rest of the tape. But, that would require effort, and compassion. Two things that CHLA does not have. It also would have taken extra time. And, the one thing we learned over and over is that CHLA is all about saving time and moving patients along.

It was more than a sign of things to come. It was a symbol of everything.

Not only did they continue to tear up my son’s face leaving scars that he still has 3 years later but Dr. Krieger’s reaction was one of annoyance when I asked him about it. His response was to just put some bacitracin on it – what’s the big deal. Not horror, not sympathy or empathy but annoyance.

It wasn’t enough that my son had to recover from brain surgery and all of the pain associated with that. No, he also had to deal with the pain of having is face ripped off one piece at a time.

If a hospital can’t get the details right, how can they get the big things right? It’s a question I should have asked myself 3 years ago when the Chiari decompression was first done. Had we taken him to a different hospital when things went south would things have been different? We’ll never know. We can only wonder. But, in hindsight it is perfectly clear. When it comes to patient comfort, patient safety and patient health vs. saving CHLA time, saving time wins every single time.

Immediately after surgery CB’s face is covered in lacerations caused by removing tape

A few days later when the lacerations were scabbed over.

Posted in Chiari Surgery/CHLA Surgical Complications, Childrens' Hospital L.A. (CHLA) Experience | Tagged baby, children's hospital l.a., chla, dr. mark krieger, pediatric brain surgery, surgery recovery | 1 Comment

The neurological conundrum

Posted on September 25, 2011 by Anne

When your kid has neurological issues, everything seems to be neurological even when it’s not. This is especially true when you are dealing with a toddler. Toddlers fall. They hit their heads. They constantly ask questions. They have violent outbursts for no apparent reason. They experiment with different things. Sometimes they succeed. Sometimes they fail. They are temperamental. You often have no idea what is going on with them.

Everything above is also true of people with neurological conditions. So it’s often difficult to know what is the toddler and what is the neurological condition. They are so intertwined that they can mask and mimic each other.

Maybe your toddler has been getting better lately in physical therapy so you blame the fall on toddler clumsiness when it really is an early sign they are slipping again.

Or maybe, you toddler had two really bad days and on the third day, they trip and fall and you blame on the neurological condition when it’s really just a fall.

It’s a fine line to walk to remain vigilant for issues without being hyper vigilant to the border of obsession.

To me, that’s the hardest part of being a mother of a toddler with an unusual brain injury. I don’t want to miss signs but I don’t want to coddle him. I want him to live as normal a life as possible realizing that he isn’t “normal” today and may never be if I don’t treat him a little differently. But if I treat him too differently, I may be stunting him in another, equally permanent, way.

It’s always scary to see your child do a header off a step, or get a bloody lip or fall off the tricycle. But, for a parent with a toddler with a neurological issue, in addition to the fear of, “is he hurt, will it leave a scar” you also have the terrorizing, usually unanswerable question of “does it mean anything or is it just a fall?”. The doctors don’t know. They know so little about what much of the brain does it’s scary. Most of the time, they’re just guessing or going by what they’ve seen before or read in journals.

It’s not healthy to be constantly wondering. Not for you. Not or you kid(s). You have to find a way to cope with it. Or, it will become a constant negative energy in your life that will drag you down. And, if you let it, your life, your existence, and your toddler’s, will become the disease. It will consume you. You can see this on a lot if the parenting forums where the moms are identified by their children’s conditions. The conditions have not only defined them, they have become them.

My way of dealing with it is to try to remain observant but to assume, unless I have evidence otherwise, that the quirk is a toddler thing. I look for big changes not individual stumbles and falls. I realize that I will occasionally miss things. I also surround myself with people who are experts. Experts who see a lot of kids and know what’s normal and what’s not. And, since it’s not their kid, their flesh and blood, they can be objective. When they tell me to worry, I worry. But, otherwise, I do my best to put it out of my mind and let him be a normal toddler.

Posted in Chiari Malformation Type I, Pseudomeningcele and CSF cyst, Recovery from brain injury | Tagged brain injury, toddler neurological problem | 2 Comments

A big day ahead

Posted on September 14, 2011 by Anne

Tomorrow is a big day for us. Poppy has her check-up to see if her head has grown from two weeks ago. I measured it tonight and my measurement has it the same. So, I’m assuming that it will be good news.

In the afternoon, BJ goes in for minor surgery to fix his ruptured trachea. With any luck, he’ll be home a couple of hours after surgery ends. But, I have to say, my Mom brain is a little nervous. I never like hearing the words, “only”, “just” and “simple”. It seems like every time a doctor says those words to me, it turns out he’s full of crap.

And, even if it’s “only just a simple” surgery, it’s still a surgery. Your child is still going to be under anesthesia. Things can still happen.

So, no matter how “only”, “just” and “simple” it is, I am going to breathe a big sigh of relief and a ton of bricks will come off my shoulders once I’m told everything is perfect, he’s no longer sedated and my baby boy is back in my arms.

Posted in Other Medical Oddities | Tagged pediatric, retropharngeal air, ruptured trachea, toddler, Tracheal diverticulum rupture | 3 Comments

A matter of perspective

Posted on September 12, 2011 by Anne

Last night we went to a barbecue hosted by one of my husband’s coworkers. My husband is a talker but he doesn’t generally talk much about our family. One of his coworkers was inquiring about #2 and his surgery this week for a ruptured trachea. I told him that BJ is doing great and that we are looking forward to getting back to normal after the surgery. The man asked how we are doing and I said good. It seemed a little odd since I had just told him we are all well.

Then, he looked at me seriously and asked how we are really doing. How is the stress level? Do we need anything? It’s a lot to go through. Are we okay?

It was genuine compassion and concern from someone I barely knew. It touched me.

I thanked him and told him we really are fine. It’s a minor procedure. It will all be over soon. And it’s all true.

It’s also true that each time something happens, it gets easier to deal with. And, compared to what we’ve been through with CB, this is a mere bump in the road.

But, it’s all perspective. To him, a man whose kids have never had a major medical issue, it’d be damn scary and stressful.

When I was in my late 20s, long before kids, I worked with a woman in her mid-50s. She was quiet, didn’t really socialize much inside or outside of work and was completely devoted to her son who was in the Navy on a boat on the other side of the world. The only other things anyone knew about her was that she was recently married for the second time and loved NASCAR.

I worked closely with her and over time she opened up to me. Eventually, I learned that when she was eight months pregnant and a young mother, she lost her husband and three young sons in a car accident. The shock of hearing the news sent her into an early labor and her son was born prematurely. This was a long time ago, before they knew much about keeping preemies alive. But, they kept him alive and, miraculously, he had no medical issues and grew up normally.

Whenever I think life is stressful, I think of her and what it must have been like to sit in the NICU next to her only living child while still grieving for what she just lost with no idea if the baby was going to live. And, knowing no matter what happens to that son, she still faces a life without the three little boys who died before they even began to touch the world and without a soulmate to share her grief. THAT is stress. Everything else is small potatoes.

We live in a world where almost no one in America knows how lucky we are and what a luxurious life we lead. They get caught up in what they don’t have. What we missed out on. What we weren’t given. Any little bump in the road, no matter how minor is cause for serious stress. The more a person has, the more they stress out about the minor issues.

In a way, with all of the odd medical things that happened to our kids, we were given a gift. It forced us to really look at what is important in our lives. And how amazingly lucky we are to have it.

Posted in American Medical System, Dealing with a seriously ill baby, Other Medical Oddities | Tagged ruptured trachea, toddler surgery, Tracheal diverticulum rupture | 2 Comments

Deja vu all over again…but this time a different ending

Posted on September 7, 2011 by Anne

Deja vu all over again…but this time I hope it’s different

Three years ago, almost to the day, we learned that our beloved dog had incurable cancer of his anal glands. It’s an incredibly aggressive, incredibly fast-moving cancer. The chances of surviving it are zero. The best you can hope for is to extend life by a few months. But all you’re extending is the time the dog lives. Not the quality which will go downhill rapidly.

Within days, as I was doing my best to absorb that I was going to loose my constant companion and best friend, a dog who played an integral part of my daily life, we learned our beautiful baby boy had a Chiari Malformation and needed brain surgery.

It was a one-two punch to the gut.

The news of our son was all the more devastating knowing that I wouldn’t even have my trusted and devoted companion to be with me throughout my ordeal.

Then, the cancer disappeared.

No one can say where it went. They checked and double checked and triple checked and it was gone. It wasn’t possible yet it had happened. Eventually, they told me it would be back but they didn’t know when. No dog was ever known to live longer than 6 months after diagnosis so it WOULD be back. And, when it came back, it would hit his lungs and death would come quickly.

As easy as the cancer was, the Chiari was hard. Everything that could go wrong did. Even things no one knew could go wrong. What was supposed to be a two week recovery has been a three year ordeal and we’re not done with it yet. No one can even tell us if we’ll ever be done with it.

In both situations we were making medical history. One positive. One negative. I had vets who wanted to study my dog. I had pediatric neurosurgeons who wanted to practice on my son. I said no to them all. There will be papers written on my dog and on my son. They have always seemed to be connected.

For three years we beat the odds with our dog and the odds beat us with our son. And, somehow everything seemed a little easier because the dog was still with us when he shouldn’t have been. One hand giveth, the other taketh away.

Then, last Thursday, we learned that my beautiful four-month-old, red-headed Arizona Poppy has a head that is way too big. From her two-month check-up to her four-month, she’s gone from 58th percentile to 89th. At birth she was 49th. She’s a big girl and she has two brothers with big heads so it’s not entirely surprising she has a big head. But, she shouldn’t have one that changed that quickly. Especially since her length has stayed constant.

Our pediatrician wants to watch it for a couple of weeks, maybe a month to see if the percentile changes again. She doesn’t want to put a four-month-old through sedation and a CT unless it’s absolutely necessary and Poppy’s fontanel is closed too much for an ultrasound. Our pediatrician reminded me many times that it’s most likely nothing. Just being overly cautious by watching. Then, as we were leaving she said, “but, then again, you are always the family that falls in the .005%.”

Two hours later, I got the news that a routine physical had uncovered cancer in our dog’s lungs. This time there was no escaping it. Things we had been passing off as an old dog with bad hips were actually side effects from the spreading cancer. Unbeknownst to us, his quality of life is already sliding quickly downward.

He’s going to get one last trip to his favorite place in the world so he can do his best to tree squirrels, pee on his favorite bushes and smell the air. Then, he’s going to the vet to die. It’s the least we can do for a dog who got three fabulous years he wasn’t supposed to and lived life to the fullest each day.

I’m trying my best to find a positive in the coincidental timing that feels way too much like deja vu for my comfort. My hope is that as Mo makes his way to heaven we’ll get good news on Poppy. That instead of this being the beginning of round two that this is not just the beginning of a new and better life for the best companion a family could have but also for the family he is leaving behind.

Posted in Chiari Malformation Type I, Dealing with a seriously ill baby, Recovery from brain injury | Tagged baby, pediatric brain surgery | 1 Comment

Mama, heal thyself

Posted on September 1, 2011 by Anne

Physician heal thyself. It’s good advice. There are many allegories along a similar line. The cobblers kids without shoes is another good one. The idea is that the person who is an expert in one thing doesn’t do it themselves. Kind of a polite form of saying you’re a hypocrite.

The same is true for moms and taking care of ourselves. Especially for moms who have children with medical issues. We spend so much time dealing with our kid’s issues. So much time in doctor’s offices. So much time researching diseases and medical conditions, researching doctors and hospitals. So much time dealing with insurance companies. The last thing we want to do is do more of it.

So, we let ourselves slide. It isn’t a conscious thing. We know we need to take care of ourselves. We know we won’t be useful to our kids if we’re sick or have a toothache. Yet, at the end of the day, we are so sick of dealing with medical stuff, we put it off until tomorrow. And then tomorrow we out it off again.

Before you know it, two years have gone by since you’ve had a pap. Who knows when you last saw the dentist and it suddenly occurs to you that you can no longer see even with your glasses because your eye prescription is so old.

I’m guilt of two of the above. The eye glasses and the dentist. The fact I detest going to the dentist doesn’t help in that regard. I’m current on my pap but miserably late for my mammogram.

Oh, I have a million excuses. Everyone does. But, the fact of the matter is that they need to be done. I don’t just need to get my kids to the doctors and dentists, I need to set a good example for my kids.

So, today, I call. No more postponing. No more excuses.

Mom, take care of yourself. Otherwise you won’t be able to take care of anyone else.

Posted in Random blogs that don't fit in other categories | Tagged taking care of yourself | 1 Comment

Starting over…again

Posted on August 26, 2011 by Anne

CB’s speech pathologist is leaving. Her husband got a job in another state. We have her for two more weeks. And, then, it’s back to square one.

The worst part, the most frustrating part, of my son’s entire recovery process has been constantly starting over. Every time we get the train moving in the right direction, as soon as all of the pieces to the puzzle are together and everyone is working together like a well-oiled machine, something happens and we have to start over.

It’s frustrating because I have devoted so much time and energy to this so may times only to have it fall apart for some reason. But, it’s even more frustrating because every time we have to start over, it costs my son in recovery time.

It’s not to say that we’re worse off after the change. Many times the change has led us to a better therapist or a better situation. But, we still have to start over and my son still looses time. I can’t say if all the lost time adds to a year, a few months or a few weeks. But, anything that’s being added is bad from my perspective.

This time, we loose Jennifer. But, what’s worse is we may not be able to replace her. Literally. Speech pathologists are in such short supply here that it appears no one is accepting new patients.

I know it’s just another obstacle in a very long line of them and in some way we’ll move through it. That’s the frustrating thing. Just when I get through one, there’s another one and then the next one…

Posted in Brain injury recovery, Our medical odyssey, Recovery from brain injury | Tagged brain damage from cyst, pediatric neurology, speech therapy | 3 Comments