Awkward Appointment

   This week we saw my all time favorite neurologist.  Not!!  We have not actually seen Sadie's neurologist since I think Sadie was maybe 5 mo or so.  I don't remember, but I do know it has been a very long time.  I had so much anxiety the days leading up to her appt.  I had to take a sleeping pill the night before because I just could not sleep.  That's ridiculous!  All over a dang Dr.
   I had so much to say to this Dr, I did not even know where to begin cause it had been such a long time since we had seen him and so much has happened.  I did not want to come across as a you know what, but at the same time I wanted him to know how upset I was about everything that has gone down over the last year or so.
   I took a deep breathe and walked in with a smile on my face.  He also came in with a smile on his face.  However, you could cut the tension in that room with a knife.  He obviously had a little bird that whispered in his ear from my past appts with other providers that I was not a happy camper. I was fine with that.  I kept calm and listened to what he had to say (which honestly wasn't much of anything), we made a plan for her next MRI, and he "looked" at her.  His looking at her consisted of checking her joint reflexes (which I'm not sure why he checked since she has never had an issue with these), and talking to her.  He then turns to me and says "have you had her hearing checked, she doesn't seem to be responding".  REALLY?!  Did he just say that me?  I couldn't speak.  I just sat and stared at him for a moment trying to figure out how to respond.  Calmly, I said "yes, it has been checked." and I left it at that.  He didn't ask the results and I didn't feel like telling him.  So obviously, he has not read her chart or looked into the diagnosis of PTCD or he would have known.
   He then starts talking about mito and how hard it is to diagnosis.  That is when I had to open my mouth.  We chatted about all the things that have gone wrong with trying to diagnosis her.  The issues I have had with this office when it came to the muscle biopsy.  How I felt like he didn't care about my daughter and how I felt like he was unwilling to fight for her.  He then stated that a lot of the issues were out of his hands.  I understand that, but I honestly believe he could have tried harder and he could have done better with communicating with me along the way so it could have at least appeared like he cared.  I then informed him that we were seeing a peds neurogeneticist for her mito over at U of M in the middle of August and hopefully she will have better luck diagnosing Sadie.  Silence...
  He then changed the subject.  He started talking about her "new" diagnosis (PTCD, which she has been diagnosed with since December so it's not really new anymore).  He was asking ME questions about what it is!  WHAT?!  Isn't HE the neurologist?  Shouldn't HE have looked up the diagnosis prior to our visit?  I understand that it is a rare, new diagnosis to the world, and I truly do not mind educating people (including Dr's) about the disorder. I understand that no one can know everything about every disease/disorder, however, if you were a Dr (a neurologist especially) and did not know what the disorder was, wouldn't you look it up prior to your patients appointment so that you have a least some sort of an idea what it is?  Her other Dr's have.  It's not hard to find info on PTCD.  As my blood is boiling and I am explaining PTCD to him, he then interrupts me and says "and who gave her this diagnosis?"  I then proceed to tell him that since I believed that she was misdiagnosed and it takes at least 8 -10 mo to get into see him and that there seems to be a lack of communication in this office, I had to go elsewhere to get her diagnosed.  I explained how I found this diagnosis and that it fit her more then PCH so I sent her MRI to this other neurologist and research study and he confirmed that I was correct about her being misdiagnosed.  He was not happy that I did this and stated that he needs to look at her MRI again because he still believes that it is PCH.  I explained that PTCD is in the family of PCH.  He became quiet and did not say anything more about this subject.
   At the end of the visit it was pretty obvious that neither one of us were happy.  He states "well, if you don't feel confident in her care with us, you are welcome to find her a new neurologist".  I said "I know, I just wanted to give you the benefit of the doubt and attempt to see you again".  We were both silent for a moment.  He then turns to Sadie and says "well young lady I hope to see you again" and "shakes" her hand.  I replied "yep, maybe" and (because she hates being touched) she ripped her hand out of his.  It was perfect timing on her part.
   I'm pretty sure this visit ended our relationship with this neurologist.  However, I'm a little conflicted about the situation.  This neurology office is the only peds neurologist in the area and the only neurologists that services our local children's hospital.  This is the hospital that Sadie goes to for everything.  I feel like I should continue seeing them so that they are aware of who she is and what is going on with her so that she can have the best care if she is ever hospitalized for something neurological. However, at the same time, I have so many ill feelings towards them that I never want to deal with this office again.  I don't know what to do.  I guess I will just have to wait until Sadie's appt with the neurogeneticist (mito Dr) in a couple of weeks to make any decisions about changing Dr's.

What I would tell you

What I Would Tell You

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Written by:  Julie Keon
June 29th 2011

Name Sign

   Last week we started a new chapter in Sadie's life... her education.  20 months old and she's starting school.  But it's all good.  1. It's home school  2. It's technically school for all of us.  A while back we met with a woman who explained the 2 options that are offered in our area in regards to education for the deaf/hard of hearing.  First option was the oral/aural approach, which is learning to listen, speak, and read lips.  The second option it the total communication approach, which is the same as the other approach except they add in sign language.  We choose total communication. 
   Sadie's new teacher came for her first visit last week.  She just gave us a lot of basic info and resources that will be helpful along our way.  She taught us the alphabet and a few useful signs; mom, dad, sister, etc... Then she says that we need to decide on a name sign for Sadie and why we are at it we can pick one for Chloe and Aubrie.  She explained how to create one and gave me a few ideas.  Over the past week we have been practicing what we have learned.  However, I am stuck.  I can not come up with a name sign for Sadie, no less the other 2 girls.  It's hard!  It almost like naming them all over again.  It was hard enough naming them the first time around!  I think about it all the time.  I want to have cute signs, but at the same time since we are unsure of how well Sadie is going to pick up signing, I want easy for her sake.
*Sigh*  Decisions, decisions! 

A Note from a Special Kid to a Special Parents

A Note from a Special Kid to Special Parents

By Sally Brown

Raising a child with cerebral palsy is full of mixed emotions. Both parents and child can at times feel confused, frustrated, joyous and grateful. This note from a special kid to special parents is intended to give both sides permission to express all of their emotions and embrace the life they’ve been given.

You are the perfect parents for me.

I know that you did not sign up for a kid like me. I also know that you sometimes think you cannot face what it takes to raise me. I want you to know that this is not true. I believe that I chose you. Whatever you need to learn, you will learn. The strength you think you need will come from somewhere. The people you need to meet will show up when you need them.

This is the perfect life for me.

My life is a very special one. I believe that I will impact the world in a unique and wonderful way. Remember this when your heart is breaking because you want a path for me that is so much easier than this one.

I need you to find your own spiritual path.

The road we are on is not an easy one. To make it successfully, you will need all the spiritual strength you can muster for the tough days. You will need to help me when my spiritual strength is out the window. Often, you will see signs of my determination and be amazed by it. That is not enough. You will have to find your own answers. I am depending on you for it.

However you feel about me is OK.

Sometimes you will feel tired and helpless and like you cannot care for me one more day. Sometimes you will be mad because there seems to be no escaping me. That is OK. There is no way you could take care of me without having those days.
Sometimes you may watch people look at me and be a bit embarrassed that I am not doing better. That does not make you a bad parent. It just means you are human.
Know that when you have lots of these days in a row, it is time for you to get somebody else to take care of me, just long enough for you to regenerate yourself. It is always important that you let people help you. I am depending on you to do whatever you need to do to take care of yourself.

However I feel about my disability is OK.

Some days you will be amazed at what a happy contented person I am and you will wonder how in the world I do it. Treasure those days. Some days I will be discouraged. Some days I will be mad. Some days I will even feel really sorry for myself. Don’t panic. I will come back around again. If you let me express these unattractive feelings, they have much less power. Even typical folks feel sorry for themselves sometimes.

Let me try things I want to try, even if you are sure I will fail.

I know that you want to protect me. I am your child; that’s your job. But I need you to understand that my survival is always going to depend on my determination. Part of my own process is to figure out what my limitations really are. Sometimes I may want to try to do things that seem impossible to you. Please encourage me anyway. It is the willingness to try that is important. Success is a bonus. Know that if I fail, I will get over it. If you make me scared to try, I am really doomed.

Don’t worry about my whole life today.

Sometimes you will drive yourself crazy worrying about how my life will turn out. You will lose hours of sleep trying to figure out how I will survive in the world after you are gone. This is not helpful to me. Just help me stay in today. The more you can focus on whatever we have to face today, the more you will be helping me develop the skills I will need when it is time for me to get along without you.

Sometimes people will be mean to me or scared of me. I expect you to stick up
for me, but I do not expect you to change the world.

There are lots of really wonderful people in the world. You and I will meet many of them. There are also some real jerks who will be afraid of me or not treat me fairly. They will assume things about me that are not true. They may even assume things about you that are not true. You may want to start a fight. I may want to do the same. I expect you to speak up for me when you can. But I also need for you to be able to let it go. It will not help me if you are mad and defensive all the time. If you are, there are people who may not want to help me just because it is too hard for them to deal with you.

Finding good doctors and professionals is important, but you know me better
than they do.

I expect you to trust your own instincts about what is good for me. The doctors and therapists that work with me are going to be very important in the quality of my life. Some of them will be amazing and some of them will be pretty crazy. Often, it will be up to you to decide which is which. Listen to them and know that what they say is important, but also remember that you know me best. If something they suggest does not feel right to you, listen to that small voice and speak up.

I really hope we can laugh.

I believe that laughing was probably God’s best idea. It will be the one thing that can bring joy to our lives the quickest. If I get stuck in a mud puddle, it is probably funny. If you are lifting me and we both fall on the floor in a heap, that is probably funny too. A good joke is worth taking the time to laugh at. Help me not get so caught up in the serious problems we face every day that we forget to laugh.

About the Author

Sally Brown is a business owner and author with cerebral palsy. She owns Creative Crutches, a supplier for Bfunkymobility, LLC. Brown has been a story teller and comedian. With love and humor she shares the truth about her life as a person with a disability.

Tears last night

   Last night I went to bed completely exhausted.  I think I was asleep before my head hit the pillow.  I'm not sure how long I was asleep before I heard "Mama, Mama I need you!" It was coming from the baby monitor.  I jumped up so fast, ran upstairs into Sadie's room expecting to see her standing up, holding onto the crib, reaching up for me, and calling mama.  I got up there and she was sound asleep.  As peaceful as can be.  I was so confused.  Did I just dream that? Then I heard my 4 yr old yell "mama". I went in her room and she asked me to rock her.  This is odd.  She never asks to be rocked anymore.  So of course I said yes.  The rocking chair is in Sadie's room so we went in there and cuddled and rocked.  And as I rocked Aubrie back to sleep I started thinking about what just happened.
   The more I thought about it, the more sad I got.  This scenario would never happen with Sadie.  Either one of the scenario's.  1. She will never stand, holding her arms out for me to pick her up (at least not anytime soon).  2. She will never call me verbally. 3. She hates to be held so I will never get a chance to rock her to put her back to sleep.  And that's when I lost it.  I balled my eyes out. 
   I'm rocking this beautiful, typical developing child who verbally called me cause she needed me.  I'm holding this child that if she wanted to (which she usually does every night) will walk down to my room and snuggle in my bed at night.  I look over at this beautiful, peaceful, sleeping little girl in her crib and I grieve for those moments with her.  I could literally feel my heart hurting.  I start to question everything.  Every feeling that I have.  Every decision that I've made for Sadie.  Even every decision that I've made for my other 2 girls too.  Do I really know what I'm doing?  Nope, I have no idea what I am doing.  I feel like I'm making it all up as I go along.  Now I feel guilty for grieving a child that I have right here, in the flesh.  So many people never even get the chance to ever have a child or their child becomes an angel way to soon.  How blessed am I to have this rare child in my life, alive and well?
   The I remembered this article that I read somewhere along my journey with Sadie.  And I don't remember who said it (I really wish I did so I could give them credit), or where it was that I read it, and I don't even remember the exact words, but it was something like this "It's OK to grieve a child that you thought you were going to have, because in doing so, it allows you to be able to celebrate the child that you have been given".  For some reason, those words have always stuck in my head (I guess maybe is was my subconscious knowing that someday I would need those words as a reminder.  Who knows?).  I sat and thought about that saying for a little while.  I said a prayer asking for guidance and peace.  Then the tears finally stopped, my heart stopped hurting, I felt calm, and I could breath again.  I know my guardian angel was holding me in her arms.  It was an amazing feeling.  One I really can't explain.
  After a few minutes in that calm state, I then snapped back to reality and remembered that it was the middle of the night and my girls would be awake before I knew it.  I laid Aubrie back down in bed and went back in to Sadie's room.  I was going to attempt to pick her up and rock her and then my mama instincts kinked in that said "don't ever wake a sleeping baby, no matter how much you want to".  I so wanted to.  I refrained, knowing what the consequences would be.  I gently played with her hair, touched her sweet face, kissed her forehead, and said a prayer with my hand on her heart like I always do, turned and went back to bed.
   The next morning as I lay in bed listening to Sadie "talk" with her sisters in the baby monitor (they go in every morning and sit in her crib with her after they know she is awake), and all of them were laughing and happy, I then realized that I must be do something right when it comes to my girls.  The tears again came to my eyes, but this time they were tears of joy and happiness.

 

Happy 4th of July

   I hope everyone had a safe and happy 4th of July!  Thank you to all of our Veterans who have served to protect us and give us the freedom to be able to celebrate this day.
   This year we celebrated by taking the girls to the zoo and sitting around a bonfire at my parents house setting of our own fireworks.  The girls had a blast.  Here are some of our pictures of the day.

  We started in the petting zoo.  This was the girls favorite. Well, sort of.  Aubrie was afraid to feed and touch them (she is so cautious), but loved that they were at eye level with her and so close.

 

Birds landing on Chloe's head.

 



 

Aubrie was all ready to feed the giraffe, and then freaked out as soon as the giraffe's tongue came toward her.

Chloe enjoyed it though.

 

Sadie loved looking at the giraffes.  She wouldn't take her eyes off of them.

 

Not sure what animal this was, but it had a really long tongue.  He came really close to licking Sadie's face.  The girls and dad thought it was funny, mom not so much!

Sadie thought he was stinky!

 

 

Finally, at the end of the petting zoo Aubrie finally got the nerve to pet a baby goat (with a little help from Papa).

 

The girls enjoyed riding the wild safari bus.

Even Sadie enjoyed it (until she realized that Daddy was holding her and she freaked out and wanted to lay down).

 

With the heat that we had, we weren't sure how Sadie was going to do regulating her body temperature.  We brought this little squirt bottle fan to help...

She was in heaven!

 

As long as she was in front of the fan, she was smiling.  I truly believed she enjoyed her first trip to the zoo!

 

 Next came the fireworks!

This was Aubrie the majority of the night. 

She really enjoyed it, I swear.

Chloe enjoyed the fireworks.

Chloe liked doing the sparklers and Sadie watched with big eyes.  Aubrie, as usual, was too cautious to actually hold the sparklers but she liked telling Chloe what patterns to make with the sparklers.

 

And since Sadie is too little to hold her own sparkler, daddy got as close as possible to her (without catching her stroller on fire) so that she also could enjoy her own sparkler.  She laughed at first and got this huge grin and scrunched up her whole body like she usually does when she gets excited.  Then she just sat back and enjoyed the bright light.

Ultrasounds and blood work

   I've really never talked about Sadie's hemihypertrophy.  What is hemihypertrophy you ask?  It is a very rare, congenital disorder (depending on what type of hemihypertrophy it is) in which one side of the body or a part of one side is larger than the other.  It's again one of those things that was put on the back burner while I was trying to figure other stuff out.  While we were at Sadie's 18 mo check up I asked her pediatrician when she needed to see an ortho Dr about her bones.  She replied not until she is older.  I'm fine with that.  We DO NOT need to add another Dr anytime soon.  I then commented about the fact that it really has not been addressed by any Dr and I wonder if it's connected to one of her underlying condition or if it's in a category all by itself.  The Dr then stated that genetics should be able to answer those questions.
   Of course when I got home from that appt I called the genetics Dr and talked with the counselor.  I asked if we had addressed her hemihypertrophy without me realizing it, and if we hadn't could we please look into it. The counselor said that no we really hadn't addressed it, but she didn't want to order the blood tests needed for it because she doesn't want to risk the chance that the insurance company will deny the exome test that we are still hoping to get approved after we see the mito Dr in August.  And once again, that test will address the hemihypertrophy tests, along with all the other issues that we want her to be tested for.  I agreed to wait (why not, it's the story of Sadie's life, right?).  However, the next part that the genetics counselor said did not make me happy.  She then continues to tell me that kids that are diagnosed with hemihypertrophy are supposed to have abdominal ultrasounds (US) and blood work done every 3 MONTHS until the age of 4 yrs old and then every 6 months until the age of 8 years old.  WHAT?! 1. Why?  2. She was thought to have hemihypertrophy around 8 months old and I'm just know hearing about this, 10 months later? That's ridiculous!  Someone dropped the ball.  Surprise!
   I asked her to explain why.  The counselor explained that "hemihypertrophy is an overgrowth of cells.  This overgrowth affects all types of cells.  Sometimes this overgrowth of cells causes tumors on abdominal organs.  These tumors are cancerous.  So the US and blood work are performed every 3 months so that the tumors are caught early and can be taken care of right away.  Survival rate from the cancer is extremely high.  The chances of getting these tumors is about 6-8%, very rare chance".  "GREAT!" I said, "very rare, just what Sadie is known for".  I was slightly irritated with this news.  Not so much the news itself, but the fact that it was 10 months ago that we first noticed this and no one informed me that we needed to be checking for tumors.  So I asked who should be ordering these tests and she said it was either themselves, the pediatrician or the ortho Dr.  Since, we don't have ortho, it can't be them.  So she stated that they will write a letter to her pediatrician and ask her to be responsible for these tests.  Whatever!  Passing the buck is what I call it, but as long as it is getting done now, who cares who is ordering it.

**I wrote the first part of this post a few weeks ago, but never published it.**

   Sadie has now had her US done and very lucky for all parties involved there was no tumors found.  Other stuff was found, but that is for another post.  The blood work was not done however.  1. Because there was miscommunication between offices or something.  and 2. By the time it was all figured out it is close to other blood draws that are coming up so I assume just wait at this point and poke her all at once.