What You See and What Really IS, is Polar Opposites.

Tags

boys, Challenge, Chiari, Dr. Gerry Grant, Family, Future, Grief, Love, medical, meltdowns, pain, Pediatric, Pediatric Chiari, relationships, Stanford

It occurred to me yesterday (while we were waiting to have Jeremiah’s sedated MRI) when I asked the nurse to take a picture of me and Jeremiah while he was laying in my arms and giggling, that he typically isn’t so easy going. I wanted to take advantage of the sweet moment in time. It required Jeremiah to be medicated however. After the versed, he was calm, I could almost feel the release of anxiety lift away from him. As the intensity receded he would lean in just a little closer to me, almost like a snuggle except he wouldn’t let his head relax against my shoulder.

I realized then that this child of ours has a few coping mechanisms that leave him isolated with his inner feelings. One: When Jeremiah is in the company of others, he will always smile. If there are friends around he will run and play. There will be moments that he will grab his blanket and place his head down on the floor or sofa, but the boy wont stop moving for long. But when the company is gone or we go home, he will 90% of the time be in pain, request meds or will be beyond pain and have a anger episode (which means I won’t be able to hold him even then). Two: when he is REALLY in pain, he will refuse anyone to touch him. I have to go against his wishes to comfort him and he will always push against me as if he wanted out of my arms.

He is an intense little soul. His happy is always on the verge of anger/frustration. He holds up a very thick wall of bricks in hopes that you may not see over the top at a very scared and vulnerable child. When the brick wall isn’t strong enough he sobs great big sobs. I am holding him then, I’m trying to take in all the hurt that I can so he feels better.

In recovery, I thought I had time to go and pick up the CD of the MRI results. The nurse said that he would call me if he woke up. I never got the call and when I walked through the door to be beside him. He WAS awake, he looked up at me, I could see the relief. The nurse immediately responded with “he woke up so sweetly”, “He is happy”. But when I looked into my son’s eyes I could see the tears welling up. He wasn’t happy. He was picking at his IV line, he was trying to remove it and I tried to hold him over the barrier of the gurney. He began to cry softly. I realized then that he was upset. He was upset that I had not been there when he woke up.

The nurse, trying to make me feel better stated that “he was happy when he woke up.” Little does the nurse know that when my son smiles, he has just put up the wall that the Versed so graciously put down, and me looking over the very thick brick wall saw a very scared little boy that really needed to be with his mommy and daddy. The true smile came when the nurse removed the IV line and I let him know we were going home.

The take away that I got from this visit to the hospital was that our son has learned how to hide how he truly feels at such a young age. It takes a keen eye to really see how he truly feels. The message that I hope you will take from this is, if you really look deeper at the actions of the individual that lives with a chronic condition, you will know that they aren’t really smiling all the time, but that they are trying to live life joyfully as possible while dealing with shit the best way they know how without pulling you down with them. If you truly knew their struggle, they would crumble and cry great big sobs of defeat, because what they deal with on a daily basis is something no one should ever have to deal with.

Picture is his scar from Decompression surgery 3/27/2015

1 year Anniversary of Brain Surgery

Tags

Anniverary, Chiari, doctors, Family, Love

Today is the year anniversary of my son brain surgery. We had the opportunity to take up Beanie Babies to Lucile Packard Children’s Hospital and give his neurosurgeon a present along with the Neurosurgical team.

The Beanie Babies and the cards that we tied to the Beanie Babies were all donated to the cause. I had envisioned a sweet and simple process of giving the Beanie Babies over and hoping that we would see a few of the nurses. What ended up happening was more than I could have anticipated. We were able to enjoy some time talking with our son’s neurosurgeon, his fellow Dr. Loven and his nurse practitioner May.

It was wonderfully amazing to be able to personally thank all of them for the care that they have given our son. We were then able to go upstairs to the area where our son was taken care of for 4 days. Our son was able to hand out personally to each nurse a gift and he also said “Thank you for taking care of me.”

The time that we spent there was a whole hour. And it was a wonderful hour. We were able to have closure and healing, as our son was scared to go into the hospital because he was afraid that he would get a poke and have to sleep there. I had some closure too. I was able replace the vision of our son laying helpless in a hospital bed, powerless to ease his suffering. It gave me closure knowing that we have a whole year behind us and helping me as a mother to make a negative process a positive one in the end.
The visit also opened up a door. I was able to let Dr Grant know that I felt that we were moving mountains out here in California,  that his compassion and understanding of Chiari is helping parents all over the west coast. It also is important to state that we have Dr Loven here from the east coast. Her knowledge is vast when it comes to Chiari and CCI. We need her to make her home here on the west coast to move additional mountains!!!

It has been, to say the least a very difficult recovery period I was really hoping that the surgery would take care of all of Jeremiah’s health concerns. Unfortunately not knowing as much as we do now the surgery has opened up another diagnosis and  process called cranial cervical instability. The instability can cause increased head pain among other symptoms. The good thing is, is that his case is very mild. We are praying that he will grow out of it or he will not need to have a fusion until he is older.
Our son’s Journey will continue. That is something that I have come to grips with and I now can move forward and make sure that he gets the best care that he possibly could get. It has been a rough year. We have had to do a lot of changing of meds to find out what works best for our son’s pain control, appetite, and sleep.
To refresh everyone’s memory Chiari is a herniation of the cerebellum through the hole in the skull. Our son’s is type 1.5 which means the the herniation was so significant that it also compressed and pulled the brain stem down into the hole as well. The brainstem controlls the bodies regulation of heart, GI, alertness, blood pressure and many other systems that allow us to remain alive. So finding out what systems are being compromised by the compression is key.
Thank you everyone for your constant support, love and understanding.

Rebirth, Renew, Regrow

Tags

central sleep apnea, Challenge, Chiari, children with special needs, Cranky, Family, Future, Grief, Love, medical, meltdowns, Parenting, teaching

 

It has been a while since I have had time to blog. To tell you the truth, I really don’t have time. I feel like this is my only outlet during times that are the most challenging to me. The whole family has been overtaken by an upper respiratory infection, which is a challenge, but not the reason why I blog today. My challenge, my own child, the one that I love and pray for peace and pain free days, a child with a chronic pain condition AND a cold. He is my constant challenge. I’m not saying that in a mean way, please don’t take this as negative. Children are all challenges, they teach us how to be a better parent, creative, loving, protective, and to see the bigger picture.

Our son’s 1 year anniversary of his decompression is coming up next month. A family member was nice enough to donate a bunch of beanie babies to the hospital that cared for him through his time there on the day that he had the surgery. I had lables printed up with our son’s profile picture and his diagnosis as well as a prayer that I pray for anyone who requests prayer. Those lables were also donated to us. His anniversary of his surgery lands on the same day as Easter this year. We will be headed up there on Good Friday to give them to the children.

Easter and his year anniversary started me thinking about rebirth, renew, and regrowth. Where are we now? Have we come far? What have I learned? Did the surgery help?

Where are we now? I’m going to be very honest with myself and you all. Our son is happy 50% of the time. When no one is watching him, he is quiet and in my mind he has a painful war going on inside him. He has pain, he is a highly verbal child, yet he still refuses to let us know how he feels (or he has no clue, because he has known this his whole life as normal). He has the ability to play and play hard, but once again when no one is around, he is laying down, grumpy and complains that he’s tired.

As a family we are a year into finding more answers to some of the many questions that we have about our son. One of which is with genetics. Is his diagnosis of Chiari Malformation a isolated incident or will this be handed down potentially to our grandchildren? I have had to cut back on my work because our son now needs OT and PT because poor balance and weak fine motor skills. He also has doctors appointments on a regular basis for eyes, endocrin, lungs and sleep….all areas affected by the compression of the brain stem.

Have we come far? Well, with our knowledge about our son’s condition yes. In regards to his behavior maybe. I am always coming up with a new hypothesis for why he has anger episodes. One hypothesis is food dyes, which we ruled as a “yes” his behavior is affected with food dyes ingested or placed on the skin. We were doing so well there for a while with making sure that he didn’t get any food dyes, but then birthday after birthday came and the temporary tattoos for valentines day came…I found out that the tattoos use food dyes as well. Long story short one kid kept scratching at the tattoo until it came off and the other had a 40 minute meltdown. No more tattoos for our boys.

What have I personally learned? I’ve learned that yelling doesn’t help. I have learned that our son “wants” to be happy but his body isn’t allowing him that luxury. I have learned that data collection is important to get a true picture of what is taking place with our son’s issues. I have learned that it is important to surround yourself with medical experts that are willing to listen and help find answers in our son’s journey. I have learned that prayer helps and it’s important to have a support group. I have learned the importance of date nights! And last but not least I have learned that life is too precious, I want to spend as much time with my boys as possible, because I never know when it will be the last.

Did surgery help our son? I think only time will tell. He was so young when he had the surgery. He wasn’t able to tell us what was going on. We may never know what he was feeling at the time before surgery. In the long run my mommy gut says yes, because the compression that he experienced was very extensive. At some point he would have gained a Syrnix. We chose to have the surgery because we didn’t want further damage to be done. Once a syrnix is present, the damage can never be undone.

So, back to rebirth, renew, regrow…In light of our son’s diagnosis and all that comes with it. We have to relearn how to BE. How to be a family again, how to master the challenges that we face daily, how to learn how to love even the ugly sides and how to grow with each other despite our failures. Easter and our son’s year anniversary of his new life. I will have a lot to celebrate.

Our son Training with his service dog.

The Fifth Surprise that Left Me Speechless.

Tags

Challenge, Chiari, Family, God, Grief, health, Love, Pediatric Chiari, questions, religion, sons

Today at church Pastor Chip our youth pastor did a sermon on surprises. He talked about Joseph and the ups and downs that he experienced during his legacy. Pastor chip talked about how Joseph’s father favored him over all of his siblings. How Joseph’s siblings sold him into slavery. He talked about how hard that must have been to live through. But that Joseph never faltered his trust in God. He then talked about how Joseph became a kings right hand man and while the king was away, the kings wife was determined to have him for herself, but over and over Joseph stood firm and refused. When the king returned, the wife lied and told the king that Joseph was the one trying to sleep with her. He was placed in jail because of it. Even then! Joseph never faltered in his love for God.

Pastor Chip went on to talk about how most people would say, “WHY ME!”

Now, let me jump back a few years. My husband and I bought our first brand new, built from scratch home. The boys loved there rooms, we were surrounded by great neighbors and we were always entertaining. Life was good. Then came several surprises. The first surprise was my husbands mother had open heart surgery, unfortunately the valve was defective. We got a call, that she was sent to the hospital and that she would need another open heart surgery. His mother almost died. If it wasn’t for the Cardiac team at her bed side that night after the second surgery and God’s will, she would be dead. During this moment of crisis, our thoughts were on prayer. Asking for Gods will, and protection.

The second surprise, during this whole process of my mother-n-law’s health, we got pregnant with our third child. Everything was going well. At 9 weeks we where able to see the heartbeat and the baby was measuring within the time frame that it should have. At my 12 week OB appointment, my doctor couldn’t get a heart beat. I knew that my baby had died. I had the D&C 4 days before we had to be in the pacific northwest for my mother-n-laws second surgery. During this crisis, my husband and I prayed for guidance, and in this case we really needed to have faith in Gods plan for our family.

The third surprise was two months after our D&C, we conceived our fourth child E. God answered our prayers and we weren’t even really trying. We just decided to leave it up to God. Because if I learned anything with the last pregnancy, I had no control over anything except what went into my mouth! I continued to pray, if it’s your will, thy will be done. Our children are Gods children.

The fourth surprise was the news that my mother-n-law would never be the same and would need to live in a nursing home to have special care. She will never be able to return to her home. We were devastated. If there was ever a moment that I regretted, it was that we never made it up for her first surgery. Had I been there, I could have seen the signs. I continue to pray for forgiveness.

The fifth surprise was J’s diagnosis of Chiari Malformation. I remember the day like it was yesterday. I got the radiology report right before I had lunch with my dad, husband, sister, and my brother whom was in town for a few days.  I was in shock, numb, speechless. My mind went to brain surgery and then hydrocephalus and a shunt, and all the complications that goes along with a shunt. My heart sunk and I held it together until I made it home that afternoon.

The whole time I never thought, “Why my son?” I don’t really even think I had much time to ask why, because within 5 months of the diagnosis he was decompressed and living again. Unfortunately, I began to research. I realized that the type that my son has, happens to be a more complex type and the results and his future would most likely be complex as well. I continue to pray for quick healing, pain free days and happy playful childhood. Not everyday do those prayers get answered.

I could so easily go there though. I could easily be angry with God for all of the surprises that we were given. One may say that there is no God and it’s all chance/circumstance. “No sir! No mama!” I know God and his angles have their hands on this family and specifically J because every Doctor that has seen J’s MRI say, “How is he still walking right now? How is he not having more issues that he does?” That’s not by chance! That’s only by the grace of God.

Don’t get me wrong, I have my moments of grieving and I’m continuing to move through the 7 stages. Anger happens to be a big one for me. Lack of control over my son’s condition has me scared and sleepless!

So, My question that I do ask is, “What am I suppose to do with this moment in time? What am I suppose to learn?” I feel that there is an overall plot to each of the scenarios. It is that life is too precious to sidebar it. In this life God has blessed and entrusted me with three beautiful, energetic, sweet, strong willed, and at times challenging boys. I want to be present for them. To know that mommy and daddy will always be there. I know that I am suppose to learn how to be an advocate for my children and maybe for others children too. I know that each child has their unique style of learning and loving and I am the person to teach them the best way to tap into it.

I know that there is a reason that God lit a fire underneath me in regards to my son’s diagnosis. The question has never been, “Why my son?” It has been, “Why this pain? How can I help him and others to live a pain free and healthy life? How can I help to stop this diagnosis from being invisible?

So, I may not have been sold into slavery, or thrown into jail unnecessarily, but the end result is the same: I will trust in God and his plan.

Chiari Malformation Type 1.5

Pretending to Have a Normal Life is Like Jumping into Hungry Shark Infested Waters with Bait.

Tags

boys, Challenge, Chiari, Cranky, Family, Grief, pain, Parenting, Parenting skills, Pediatric Chiari

It has been a while since I have been writing. Needless to say, my blog has been on my mind. This venue has been therapeutic for me, and yet I haven’t had the time, nor allowed myself to sit down and write. The boys have been challenging to say the least. So, how is it that I am able to write today??? I’m sick and the boys are at daycare and school. So instead of sleeping, I’m taking care of my mind first.

My middle son J’s six month anniversary of his decompression surgery was this last weekend. I have been waiting for this moment since he had his surgery, because the other Chiari mom’s have stated that at about the 6 month mark, the pain starts to subside, limbs that tingle will improve, headaches will be more manageable. His Neurosurgeon even agreed that we needed to give J some time to heal before medicating him for his pain.

So, the update. Good news first: J’s leg pain has subsided. Yea!!! We don’t have to carry him up and down stairs anymore! He doesn’t complain of right eye pain or right ear pain any longer. To find out he did have some swelling behind his eyes…go figure. The swelling has since subsided.  There could be a slue of other symptoms that he was unable to verbalize that have subsided, so I will consider that a positive. 🙂

Now for the bad news: He continues to have anger episodes because he continues to have head pain. We found out a couple months back that he is highly sensitive to pressure changes. So, when he gets sick, he will have headaches for approximately 4-6 following the sickness. (Lovely) He will experience headaches with barometric pressure changes. When he lays down for long periods of time, he has headaches. (This has drastically changed his ability to sleep through the night and take naps). When he plays hard, plays soccer, just plays, he will get a headache that takes him out for the following day. If he is out in the heat for too long…guess what friends….he gets a headache. (A side note to you parents of small children, if your child has never slept through the night ever! Or they refuse to take naps and they are young, they could be experiencing pain…I’m not saying that they have Chiari, I’m just saying they could be experiencing pain somewhere.)

So, this being said 90% of the time, J is in pain. Which means that 90% of the time he is pissed off at me or dad. That being said, I have lost my edge, friends. I have lost my ability to remain positive. I’m angry at the fact that my son doesn’t have a “Typical” boys life like others. I’m sad that he has to go through life with this invisible diagnosis. I want to “pretend” that we have a “normal” life. When we do that though, it ends up biting us, or his brothers in the butt, because he is unable to control his pain afterwards.

This is the face that we see every morning. Trying to get that smile back.

The positive side of all this is that we are all learning how to monitor and verbalize the pain. As parents we are looking for the cues, and constantly checking in using the FACES pain scale. My older son is now able to recognize when his little brother in in pain and can tell us. The unfortunate thing is, is that J refuses to show us where his pain really is. Instead of pointing to the sad face he will point to the straight face or the happy face. My hypothesis is, he has been living with a level of pain his whole life and has been functioning probably at a pain scale of a 2/3 which is his 1 (Happy face). So not only are we trying to redefine what pain is to him, but we are now trying to teach him to “Check-in” with himself and learn how to ask of medication.

This is the Pain scale that we use with our son.

The proverbial light just got hotter…

Tags

central sleep apnea, Challenge, Chiari, Children, Cranky, Death, disappointment, Family, Future, Loss

Get ready friends and family….I’m feeling a bit off today. I received some very disturbing news today that a fellow Chiarian passed away in her sleep. She just graduated from highschool!!!! She had her whole life ahead of her.

Even though I don’t know her personally, my heart aches for her family who now has to move on with life without her in it. As a mother of a child that has Chiari and who was recently decompressed due to the effects of the herniation of the cerebellum. I cry out silently, why do our children need to suffer! Why is there no cure! Why is there very little research! And lastly and most important WHY IS THE MEDICAL FIELD SO INEPT TO HELP A CHIARIAN!!!! The fact that the doctors and other specialist out there aren’t educating themselves and unwilling to learn how to best support a person with chiari is mind boggling!!!!

Let me put it into perspective for you…Say for example a child that has chiari has to go to the emergency room due to complications of the Chiari… they post on our closed forum that they are taking their little one to the ER…you know the first words that come to mind from a fellow parent of chiarian???? “RUN AWAY!!!” Why you ask?? Because your cookie cutter hospitals don’t know jack squat about how to treat a person with chiari because they don’t know about CHIARI!

Can you imagine my frustration when I hear that the medical field that I work in, won’t be able to appropriately care for my child because they don’t have the education about Chiari??? Things need to change people. I’m here to tell you that the light just got a whole lot hotter under my ass.

If there is a research study taking place, I wanna be a part of it. If we need spokes people? I wanna be one of them. If someone needs an advocate for themselves or thier child, I wanna be one. If doctors need research ideas, I have a bunch in my head right now.  In other words, “Chiari will not remain a silent and deadly diagnosis.” I have a feeling there is several mama’s out there willing to take the same steps with me, however I don’t want it to end there. I want my friends and family to know and understand, I want the mass population and medical field to be aware. The only way we can do this is with funding, so that we can educate doctors and legislators.

You know what!!! I want my friggin computer to know that CHIARI is a friggin word!!!!! It won’t even allow me to add it to the dictionary!!!!!

Ok getting off my soap box now.

I am burning this purple candle in honor of a child lost to Chiari.

Here are a few links to some informative sites on Chiari

Conquer Chiari http://www.conquerchiari.org/index.html

American Syringomyelia & Chiari Alliance Project http://asap.org/

Eyes wide open.

Tags

boys, Challenge, Children, Family, life, Mother's day, Parenting, selfless

Here’s my take on how Mother’s Day came to be…I think a card shop owner was going to lose their hat, so they decided that they needed to create a day so that people would get together to celebrate mothers and everybody would show up at their card shop and spend a bunch of money to show their appreciation for their mothers and to let them know that they are loved. Really, it’s just another excuse for people to spend money and the merchants are the only ones really makin a profit off of families for mothers day. To me Mother’s Day means just another day! I know that can be kind of harsh maybe even Bitchie, but it’s my opinion on it. Same thing goes for Valentine’s Day, Valentine’s Day is so overrated and maybe it’s because I don’t celebrate Valentine’s Day. Yet another day where people go out and spend a bunch of money on flowers that die 5 days later. Don’t get me wrong I love flowers, if I could have flowers every week in my house I would love it. I love flowers. But I don’t want my significant other to feel obligated to tell me how they feel on this special day, I want to hear it on any day that spontaneously comes to their mind.
Now that being said, I am a mother of 3 boys which means that most likely I will probably hear that I’m the best mom on the face of this planet, maybe once or twice in my lifetime. I know that I am assuming and I don’t want to knock the men who know how to express themselves, I just don’t want to get my expectations up, just to be disappointed. If I had a daughter, I probably would hear all the sweet lovey dovey stuff that a daughter loves to tell her mother. I try to tell my mother as often as it comes to me how much I appreciate her and how much I love her and that her support means the world to me. But of course I am a female.
So my expectations are pretty low in regards to my son’s ability to verbally express their love and appreciation towards me at any age. At some point in their lifetime I will probably rub it in their face that I have endured puke all over me, been used as a snot rag, only got 4 hours of sleep, coughed on and wiped every one of their butts and that is just some of the activities that I was blessed to do today. So mothers day to me, I try to go into it with no expectations whatsoever because I don’t want to be disappointed.
You know what the best mothers day gift that my boys could actually give me would be?  For all of them to grow up,  being self sufficient, well adjusted men, that could contribute something positive to society, provide for their family and respect their wife. I strive to teach my boys respect and understand the importance of saying please and thank you and having manners.  I also try to teach my children importance of making good choices. Putting everything that my husband and I taught our boys into practice would be the ultimate gift.
I know and understand that being a mother is a selfless job and I went into motherhood with that expectation. To expect anything in return, would be setting myself up for constant disappointment. So the answer to the question, “How was your mother’s day?” Will be something similar to, “Great! I only had to wipe one out of the three butt’s today AND I got 3 straight hours of sleep!”
Don’t misinterpret what I am saying. I love my children and I know that I am magnificently blessed to be able to raise these three beautiful intelligent boys. I’m just going into motherhood understanding my roll and I’m going to be thankful for even the most challenging times. I don’t expect to be thanked at all because I took this role 100% eyes open wide and I’m very blessed, proud and honored to be a mom. I wouldn’t want mothers day to be any different.
Happy Mother’s Day to you mom’s….we have been magnificently blessed!

Getting up on the wrong side of the bed

Tags

Challenge, Cranky, Currently, Family, Food, Grouchy, Movies, Oliver Twist

***Grammy’s Musings Strike Again***

This morning Noodle came down stairs in a terrible mood. The “surly-cranky-pants- nothing-will-soothe-me” kind of mood…I’m sure you know what I talking about.
So, I began to wonder where we got the term “Waking up on the wrong side of the bed”, and was surprised to hear that this term goes waaaaayyyyyy back to Roman history when even the great Julius Caesar was frightened at the very thought of rising from a good night’s sleep only to find that he got out of bed on the LEFT side, which, if I understand it correctly was very bad luck in those times.
What it means for us today, is that you got up in a grouchy, irritable state, and your family, friends, and colleagues are going to wish you would go back to bed and get over yourself!
Fast forward now, to the visit I had today at my favorite hole-in-the-wall-yummy-for-your-tummy chicken place, where you and your friends have to decide who is going to open the door and sacrifice a hat, just to find out how the one-and-only waitress’s day is going. The whole experience reminds me of the movie Oliver…when the orphaned boy Oliver goes up to the caretaker and asks for another bowl of gruel and gets punished severely…

“Oliver” the Movie

Even if it is only 15 minutes past opening time this “Sandra Dee-freckled-faced woman” can decide your fate if you somehow ask the wrong question, (or heaven help you), if you change your order. The object of the game when sitting down to eat in this place is to keep your order short, and eat what is placed before you WITHOUT QUESTION. Today, was one of those days when the people sitting at my table (all of them seasoned customers) decided to work the waitress up by asking to leave the mayonnaise off a sandwich….or to split the order between two people…holy smokes if that wasn’t enough someone else gathered enough courage to ask for a glass of water because the diet coke was flat!!!! Saints preserve us! Her one good eye shifted off to the left and her mouth began to droop! What really shook me to the core was when someone asked to give her a to-go order to be ready after lunch was over. ARE YOU MAD????? Can’t you understand that we are about to see a behemoth rising from the ashes????? Forget zombies…this waitress puts these wimps to blush!
Once we lived through that skirmish the strategy then became “who is going to ask for ketchup” because in this place you had to think long and hard about if you really needed anything else after she had placed your meal in front of you…I can tell you that this waitress has a tendency of “waking up on the wrong side of the bed” every time we have visited this joint. If the food wasn’t so good, we wouldn’t even consider eating it as is. Come to think of it, I haven’t ever “thought” to return my meal because it wasn’t the way I asked for it. So, we make a game of it, and see who will discombobulate the waitress first.

“Mommy, I got a poke and I was brave.”

Tags

Chiari, Dr. Grant, hospital, Love, Parenting, recovery, relationships

Well, today is the day that my son goes under the knife. They will be creating more space in the base of his skull to allow for cerebral spinal fluid to flow without blockages. His cerebellum has moved so far down his spinal cord that the brainstem has been compressed severely. 

The past several days have been very difficult for Jeremiah. We went to the beach on Wednesday, where J ran around with his brother. He played hard that day. But with playing hard comes extreme pain and discomfort for a our little chiarian boy. That night I found him sleeping with his head hanging off the bed. He looked like he was trying to go upside down. Thursday came with fun zoo time, but unfortunately J was unsteady on his feet and unwilling to walk by himself. Thursday night was even more difficult as the Tylenol that I gave him at 8 pm wasn’t working and sent him in to a full on anger episode that last 2 hours. My husband has battle scars because of it. 

This has solidified my opinion of the importance of this surgery. Even though part of me knows the importance, I feel devastated that he has to go through this. From this point on in my blog I will remain positive, and….Go!

We went to Halfmoon Bay Brewery on Tuesday night for dinner. The boys were excited to go to the beach. After dinner we walked along the pier when all the sudden we here something breathing, it was a very larg seal. He was following us along the pier…he stayed awhile and then headed towards some seagulls close to the shore. Then when we were on the shore line, we had some beautiful black birds trailing behind J. My point is, it seems like animals gravitate towards him. He has a gentleness about him that aminals gravitate to. 

At the Linda Mar beach the boys were throwing rocks into the ocean. Instead of throwing this one particular rock, J brought it to me and said, “here you go mommy.” I looked at the sand covered rock and thought to myself…my first rock, from my 3 year old! Then I cleaned it off to notice that the ocean had been turn this one around it the sand for a long time and looked polished. It had the shape of a tear drop. I plan to keep it as a momentum of the tears I pray that he will no longer have to shed because of the pain due to this awful diagnosis called Chiari Malformation. 

The next day we went to the San Franscico Zoo. Jeremiah, I could tell wasn’t Feeling right. Looking back at the pictures that my husband took shows a distant look in my son. In my heart I know that he is feeling pain in these photos. 



He still had a lot of fun looking at the animals, he just didn’t feel like getting out of the stroller. He tried to be a trooper though. He ended up paying for it that night. The Tylenol just didn’t cut the pain out. 

D-day was surprisingly calm. Jeremiah I could tell wasn’t himself but he would try to put on a smile when people would introduce themselves to him. But the moment that the attending anesthesiologist pulled out her artillery of bubbles….J genuinely smiled for the first time since Wednesday. 



During the waiting game, I had moment where I broke down crying. It was really hard when my husband and I where invited to take a tour of the PICU. I want to say that I was teary-eyed several times through the process. But in the in the end we had family and friends there visiting and really kept my mind from spirolling down. I am very thankful for our support system. 

Dr G later came in to speak to us about the surgery. Little man did great, the doctor said that it was extremely tight in there and it’s no wonder he was having head pain…the cerebral spinal fluid was trying to pass through but kept pushing up against the cerebellum. We now have to worry about a whole list of other issues because of the surgery. But I’m not going there, because I am remaining positive. 😉

I just have one rant, and then I will move on though. When we saw our son for the first time after surgery, I began to cry and the social worker was there and I requested for the chaplan to stop by and pray with us. The nurse looked at me and asked why I was crying….Are kidding me right now, young whipper snapper all of 24 years old!? My son is sedated because he just had brain surgery!!!! Am I supposed to be freakin jumping for joy happy (like I’m in Disneyland) right now? You know I will be saying a few choice words when I gather my appropriate words.



Ok rant over…when little man woke up enough to know that I was there he said to me, “Mommy, I got a poke and I was brave.” With that I replied “Yes son, you are braver then mommy ever will be.”

So, the recovery has begun and we have a long way before he will be 100%, but even then he may never be pain free.  



Brain Surgery. . .REALLY???

Tags

Chiari, Dr. Gerry Grant, Grief, Love, pain, Parenting, surgery

Courtesy of Kellie Munro Photography

If there was any doubt that my son needed to have brainstorming surgery, it is gone! J has been on a Motrin regiment for the past few months, however because the pain medication is a blood thinner, I had to take him off of it a week before surgery and replaced it with Tylenol. That has been a nightmare! We have had anger episodes every time we had a laps in Tylenol. Then when I would give it to him he would yell at me because it wasn’t working. It finally occurred to me that since he has had this pain all of his life, he thought it was normal to feel this way. Once we started the Motrin regiment and he was feeling better, if I missed a dose he would start to complain of head, back, and leg pain.

It is amazing that this little boy has dealt with this pain, all the while smiling. The doctors look at him and think…”It’s amazing that this little guy has a Chiari Malformation and he is running around like he’s a pro at it!” At this I say to myself, “Yeah, but then we and he pays for it later.” This child of ours plays hard but then later he gets an extra dose of pain on top of his “Usual” pain.

I know that I have talked about the pain of this diagnosis, but if there is anything that you can take away from this story is that if you have a child that complains of pain…or anyone for that matter…listen and believe them. Respect and acknowledge how they are feeling and try to understand why they are demonstrating anger, frustration at certain things. I know it’s hard as I live with it daily. I have been frustrated right back at him and I have often felt horrible for making him feel even more horrible.

I am praying that this surgery will give him freedom from the pain, give him back his swallow, good hearing, and balance. I am also praying that the surgery will take away his anger episodes that lately we are seeing 2 to 3 times a day. However as a mother, even with knowing all of the stuff he is going through, I am so scared for him. I wish he didn’t have to go through with this!

I also want everyone to know that this isn’t the end. In fact, this is the beginning. This is a life long struggle for him, he will never be cured, and isn’t guaranteed a pain free lifestyle. He may have several surgeries. To me this is devastating, that my little boy will never be the same again. Innocence will be lost (meaning, he will have a skewed opinion of doctors and the medical field). In my opinion no child should ever have to go through surgery/chemo. I feel that it’s cruelty, yet it’s reality.

I am coming from a very sad place today. However on the grieving scale, I have finally gained acceptance.  Please keep thinking positive and send prayers for our family, this week will be very trying. I hate to think that my little boy has to endure MORE pain before he will be pain free. . . GO FIGURE!

Courtesy of Kellie Munro Photography