Monday, November 26, 2012

All Knotted Up: Muscle Biopsy

If this post comes across as a little scatter brained there's a reason for that...I feel very discombobulated right now and I don't believe that will stop until after Friday. I hope you can make some sense of what I'm writing...

Tomorrow we head to Atlanta, GA for a muscle biopsy. I feel sick to my stomach. I didn't feel like that a month ago, a week ago, or even a day ago, but now I feel the anxiety swelling inside. At some point, it's going to overflow and I'll probably end up snapping at someone that doesn't really deserve it (that or I'll cry for no reason at all) and I'll have to apologize.

I haven't done much research on muscle biopsies (it can be dangerous) and last night I thought I'd be brave and try to prepare myself for what is happening this week. I entered "muscle biopsy scar child" into the google search engine and I found a picture at Quinn, Krista, and Lila, a blog about a young family in a similar (but oh so different) situation. The scar took me by surprise. It's much larger than I was anticipating. I started to cry. Then I wanted to know more about Lila. What I read made me cry even more. My heart goes out to them.

I don't want to research this anymore. There are too many variables that I just don't know or understand. I'm scared...very scared. The biopsy may give us the answer that has eluded us for over a year (not very long in comparison to others) or it may only leave us with more questions and no answers. As much as we'd like to have a specific name, this will not become my white whale. I refuse to let this consume us....but that's going to be hard at times.

Wednesday we meet with the doctor at Medical Neurogenetics. I don't have any clue what to expect at that appointment, but I know I'm taking my giant binder containing all Rae's medical information. Thursday we are going to have a day in Atlanta...just the three of us. I've never been to Atlanta. Usually, we're just going through it to get to Indiana. Friday, we check in at the surgical center and then we wait.

I probably won't be writing much while we're gone. I hope you all have a great week and if you can spare a few moments...say a prayer for us. I don't know about Jacob, but I'm feeling pretty weak and angst ridden right now.

Friday, November 23, 2012

Sun Beams: Reaching Inchstones

This week during Rae's PT and OT session we had some wonderful examples of progress! She did such a great job and worked so hard to meet these inchstones that I had to run and grab my camera so I could capture it on film (and video of course).

It was a GREAT week and I want to share those moments with you...

video

Rae showing off some great head control with Ms. Anna!

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Rae sitting pretty while watching Sid the Science Kid.

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Rae playing with a ball during OT with Ms. Karen.
This is a BIG development and is the first time she has actually played with a ball!

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Rae pulling (not racking) pegs from the board and dropping them in a bucket.
This has taken months of work and she just started doing it without prompting this week during OT!

Sitting without support from Ms. Karen.

Weight bearing on her arms (about 70% her, 30% Ms. Anna) and sitting unsupported!

These exciting developments were just what we needed!

Thursday, November 22, 2012

5 Things I'm Thankful For

We set aside one day a year to reflect on all the blessings that have been bestowed on us, the things we are thankful for, and to subject a family member or friend's home to mass chaos (hosting can be a joy and a major stressor). I don't often like to participate in all the "thankful" postings on social media (they sometimes seem a tad repetitive), but I do have a few things on my list...

A very small fraction of our family.
1. I'm thankful for my family and friends (an obvious choice). They have stood beside me through all my emotional breakdowns, irrational logic, and bi-monthly (*cough-cough*...bi-weekly) pity parties (no one likes being invited to those). They have celebrated all those little inchstones with the same exuberant joy one would express at winning the lottery (maybe not that much, but it's close).  They have helped me over so many bumps, hurdles, and pitfalls to numerous to list. Most importantly, they haven't made me feel like I'm not doing enough for Rae, they don't think I'm crazy (maybe just a little) when I suspect something else may be wrong, they've willingly been my shields when strangers prod, they remind me that I also need "me time," and they love, Love, LOVE our daughter for who she is and not who she isn't.

Rae and Karen, her Occupational Therapist,
during her session this week.
2. I'm thankful for all the doctors, nurses, lab techs, therapist, case workers, insurance reps (especially Ms. Timmons at BCBS...she called me almost every day to keep me posted about the status of a particular concern), and everyone in between who have helped us maneuver through this Hypotonic maze, offered us hope & encouragement,  and (on numerous occasions) graciously taken the extra 10 minutes (okay...20 minutes...running over into someone else's appointment...sorry) patiently going over information they've already explained two or three times before and listening to me go on and on about our long list of concerns. They never once made me feel like I was wasting their time!

3. I'm thankful for my health (another obvious choice). I'm not in the best shape physically, but I am healthy enough to care for Rae (for now...knock on wood). I had a pretty big health scare this summer and ended up having my thyroid removed it was two and a half times average size, was starting to choke me, and stretched my vocal chords to the point they were about to break (my vocal chords are still not fully healed). Thankfully, it was not cancerous. While at times I feel the strain/pain (physically), I'm still able to get up and down from the floor after playtime or therapy, I'm able to lift her in and out of her crib or the tub, and I can carry her (this is becoming more difficult and my back is starting to file complaints). Under normal circumstances, I'd probably blow off my own health issues (and I still do from time to time), but I have to take it more seriously now. Rae needs me and I need to be here for her.

Rae with Anna, her physical therapist,
during this weeks session.
4. I'm thankful for my online support group (Hypotonia Parents Connection on Facebook). You ladies (and men) are awesome! You just "get it." You don't judge anyone when they get angry and vert or share worries and fears. You offer such wonderful assistance when researching testing/therapy/toy options. You laugh, rejoice, and cry with each member. It's bittersweet that the number of members keeps rising. I'm thankful for each of you...you help me stay sane!

5. I'm thankful for the inchstones. Those tiny developmental drops of rain that sustain us through the periods of draught. Two weeks ago, I was in despair. We hadn't seen much progress for weeks and I was at a loss. Nothing seemed to work and everything seemed to be off the rails again. It's not a good place to visit, let alone feel like you've been stranded there. Fast forward to this week and it was like a fog had been lifted! We have some big (positive) changes and my cup was once again overflowing with joy.

I could continue to list all the things I'm thankful for (my growing faith in God, the roof over our heads and food in our pantry, etc...), but that would be a never ending list. This is my short list. The ones I remind myself of almost every day.



Wednesday, November 21, 2012

More Than I Can Handle

You might want to get comfortable for this post...it's a tad long. I have wanted to write on this topic for months, but just needed to really get my thoughts together before putting them out there for the world.

Are you comfortable? Got something to drink or nibble on (you might need it)? I'll give you a minute.

...(humming Jeopardy theme song)...

Ok...let's get on with the post...

I have my hands full (most of us do). At times I seriously doubt whether I can bear much more emotional weight on my shoulders. There always seems to be one more hurdle (quickly followed by another) or one more emotional upheaval (we've had three deaths in my immediate family this year). It is exhausting. It can be depressing. It usually just downright sucks!

But you know what sucks more...hearing, "God will never give you more than you can handle." It nearly drives me over the edge of sanity once spoken. I have to fight back my snarky retort aimed at the person who honestly believes they are offering some form of comfort (its NOT a comfort...please STOP saying it!). The theme of this phrase has even found its way into the song He Said by Group 1 Crew (I can kind of let this one slide though). This misnomer is not founded in any book in the Bible, but it is derived from a misinterpretation of an actual verse, 1 Corinthians 10:13. How in the world did 1 Corinthians 10:13 become the foundation for this offering of encouragement?!?

Let's look at the verse (New King James Version):
"No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it."(emphasis added)
This is the verse that has been used to support the misnomer of God not giving us more than we can handle. I believe there are two key words to this verse...temptation and escape.
  • Temptation is defined by Merriam-Webster as:
    • The act of tempting or the state of being tempted especially to evil
    • Something tempting; a cause or occasion of enticement
Let's deal with this word first...

I believe people are confusing temptation with burden...they are not the same thing. The burdens and struggles I am carrying don't have anything to do with temptation (unless I'm tempted to run away from my daughter...uh...no). I am not being tempted to evil by hearing devastating test results, researching new therapies, burying a family member, or seeing Rae fall further behind developmentally (unless you count being tempted to break a few dishes in my back yard purely out of frustration to be evil). I am not dealing with temptation. I am dealing with very overwhelming emotional/spiritual battles with myself, with my faith, with my friends/family, with our doctors, labs or insurance company, and with my daughter (she is a stubborn little stinker at times).

Let's review the second word...
  • Escape is defined by Merriam-Webster as:
    • To get away
    • To avoid threatening evil
    • To get free of
    • To get or stay out of the way of
This word deals primarily with leaving or avoiding a situation. It's pretty cut and dry. I can not "escape" my emotional battles (especially since some of them are internal) or avoid dealing with my daughter's medical quagmire. Escape is not an option. God delivering me of my burdens is not an escape plan. He's more like a support group leader. Offering me His strength during my weakness and helping me carry the load that I am unable to carry on my own.

So, why does this cliche bother me so deeply? Because I believe it is derived from a biblical verse that has been taken out of context and does not in any way offer real comfort. I also believe that if we never had to endure anything we could not handle then we would never need to turn to God in time of need, sorrow, struggle, or weakness. If I could "handle" any situation then I can rely solely on myself. I don't believe that is what God intended.

Paul, the same man who wrote 1 Corinthians 10:13, later wrote in 2 Corinthians 1: 8-10,
"For we do not want you to be ignorant, brethren, of our trouble which came to us in Asia: that we were burdened beyond measure, above strength, so that we despaired even of life. Yes, we had the sentence of death in ourselves, that we should not trust in ourselves, but in God who raises the dead, who delivered us from so great a death, and does deliver us; in whom we trust that He will still deliver us," (emphasis added)
Paul was at a low point in his life. He felt burdened beyond his own, earthly, ability to handle and felt his earthly life may soon be over. He recognized that there are times when the burden is more than we can handle on our own and we should trust that God will deliver us. Paul was given more than he could handle! That is a huge contrast from the verse being offered as encouragement that God will "never" give us more than we can handle. If Paul was given a burden he could not bear on his own, then why would we not be given a burden we too could not bear without God's help?

Lisa Copen, founder of Rest Ministries, writes:
"Let me tell you something that may come as a surprise. God does give us more than we can handle. Every day He may place us in the position where the pain is too much to bear. Why? Because we were never meant to do this life without Him! He gives you more than you can handle–but not how much you and He–together–can handle."
AMEN!

So, why do we continue to say this to people?

When someone is in the middle of dealing with illness, death, or just about any situation that causes doubt, pain, or depression...a common feeling is that the situation is too much for them to handle. It's swallowing them whole. It creates overwhelming doubt about their ability to overcome this life altering circumstance. Hearing, "God will never give them more than they can handle," may generate more doubt (or anger) or cause a serious fracture in their faith. They are already fighting a mental battle as Lisa shares,
"Over and over I have heard the saying, “God doesn’t give you more than you can handle.” But what about the pain. . . the grief. . . the depression. . . the darkness? It is more than we can handle. Much more. There are days that we wonder is life worth living if we have to get up every day and fight to be strong?"
Why are we adding more fuel to the fire? During the course of your life, you WILL have more than you feel you can handle. You are not designed to deal with everything on your own (even if you cling to family or friends and not faith). Here's my solution to those that wish to encourage and support those in pain... Stop saying, "God will never give you more than you can handle." It's not true. Instead, look for meaningful, scripturally based (if that's your thing) words of encouragement. Here are a few verses I have found comfort in:

"Cast your burden on the Lord and He will sustain you;
He will never allow the righteous to be moved."
Psalm 55:22
(God wants to help you carry your burden, but you must give it to Him.)

"You hear O Lord, the desire of the afflicted; you encourage them, and you listen to their cry"
Psalm 10:17
(He sees and hears you. Your pain, your fear, your sorrow. He sees and hears it all.)

"Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus."
Philippians 4:6-7
(When you feel your anxiety rising...stop, take a moment to collect yourself, and give that anxiety over to God. He will protect you. Accept the peace of mind He offers you.
I need to remember this one more often.)

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."
Joshua 1:9
(You are NEVER alone! He is ALWAYS with you!)

*I didn't come across these verses on my own. I had some help from a friend that invited me to join her in a Bible study called Brave Honest Questions Women Ask by Angela Thomas. I highly recommend this study for those struggling with a burden(s) or thorn(s). It's great with a group, but if you don't have a group please try it on your own.

Tuesday, November 20, 2012

What's in a Name

My daughter is named after my Grandmother. I knew years ago that if I ever had a daughter then she would carry on the name. During my pregnancy, I looked through my giant book of baby names searching for the right name to follow my Grandmother's. Names were highlighted, pages were tabbed, and I had a notebook with various configurations laying on my desk. This was not an easy task (I took it very seriously) and at times my husband and I butted heads over a few of my suggestions (I wanted to use Charlea, after my Great Great Grandmother, but that was vetoed).

Eventually, we settled on her middle names (yes, I said nameS, she has two and I had to fight for that as well). I wrote them over and over just to see how it looked on paper before filling out her official birth certificate. I spoke her names to her (and anyone that would listen) so I would become accustomed to saying them all together (for those occasions when she was really in trouble). I looked up the origins and meanings behind each of her names to make sure I knew what I was naming her. The cherry on top was in knowing that there was a personal connection to each name we picked out.

Rae's first name is after my maternal Grandmother (yes, I know I told you this already) and I knew I wanted to honor her by giving her name to my child. She and my Grandfather were a "safe place" for me. Always steady and strong. She taught me to bake and sew. He taught me to play cards and how to lose. If Rae wasn't a girl, I would have used one of my Grandfather's names. We lost them both this year and I'm still working through those loses. I loved them dearly and they loved me. I miss them.

Rae's second name is German in origin and based in mythology. I feel deeply connected to my German ancestry (I've become the family researcher) and wanted to honor that when I named my child (boy or girl). It also has a pop culture reference that my Mother and I hold dear (I'm not telling you because I like to keep some information private...yes I know privacy is an illusion, but allow me my illusion). We're very close...always have been...some people thinks its weird. We don't care because its just who we are and we're happy with our relationship...it's one of the healthiest ones I've ever had. She is my rock, my voice of reason, my grammar checker, and more. We finish each other's sentences, have the same thought at the same time, find humor in some of the most bizarre things, and yes...we argue, but we always make up. God help me whenever I lose her.

Rae's third name you already know. It's Rae. This name has a biblical connection for me (but that's a whole other story/blog). It's for Rachel, the second wife of Jacob. The wife he loved, the wife he worked 14 years to marry, the wife that gave him his favorite son, Joseph. Rachel was desired, wanted, and loved beyond compare and that's the way we feel about our own Rae. This name was also given to her because she is our own little ray of sunshine. The center of our universe. The bright dawn after the dark night. She is our everything.

Each name is significant and one day when she asks me why we chose these names I can tell her (or show her this post) and she'll know her names were thoughtfully chosen.

Thursday, November 8, 2012

Repost: Hypotonia: Definition

This is a repost of one of my most viewed postings. It is part one of three regarding Hypotonia (definition, causes/effects, treatments). There has been an increase is members of my support group on Facebook (Hypotonia Parents Connection) and I hope this helps them understand what their children are being diagnosed with and how to explain it better to friends and family (or the random strangers that makes rude comments).

I have contemplated this post for months now and it still hasn't gotten any easier to put "what" Hypotonia is into words. I can go the clinical route and tell you all that Hypotonia is simply low muscle tone, but it is SO much more than that. It is usually considered a symptom of an underlying problem (obvious or not) and, when testing excludes MANY medical conditions, Hypotonia can be it's own diagnosis with no real answer to what caused it to develop. What I do know is Hypotonia leaves you feeling helpless because there is NO CURE, just therapy...lots and lots of therapy.

I've decided that the best way to try to explain what Hypotonia is will be to break it down into separate postings:

  1. Definition
  2. Causes and Effects 
  3. Treatments
Part One

Hypotonia is defined by the Children's Hospital Boston simply as,  "decreased muscle tone" that "can be a condition on its own, called benign congenital hypotonia, or can be indicative of another problem..." This differs slightly from the John Hopkins Hypotonia Clinic that states within the first sentence that, "Hypotonia is not a diagnosis, rather it is a symptom of diminished tone of skeletal muscle associated with decreased resistance of muscles to passive stretching." Being a parent of a child that, at this point, has no determined cause for Rae's Hypotonia, I am inclined to slightly disagree with the John Hopkins definition. So, let's break this down...I promise I will try to leave out as much medical mumbo jumbo as possible.

Here's what low muscle tone is not... 

Prior to Rae's diagnosis, I only heard the term "muscle tone" on television or in exercise informercials where someone was pointing to parts of a fit and trim woman's body stating they needed to "tone up." The implied purpose of toning was to make a person's body more defined and sculpted. This idea is a myth. Muscle tone has NOTHING to do with a persons physical appearance. The correlation between muscle tone and physical appearance was created to make the idea of developing muscle mass more palatable for women who didn't wish to look like a professional body builders. According to Matt, who offers an in-depth explanation of "toning," at AnswerFitness.com, a toned body is, "simply low body fat coupled with muscle mass." The fitness world's use of the word "tone" doesn't correlate with the medical world's definition. So, my initial confusion is somewhat understandable considering my base knowledge was gleaned from late night exercise infomercials and wanna-be model programming.

So, what is muscle tone and how does it work?

Merriam Webster defines muscle tone or tonus as:
"A state of partial contraction that is characteristic of normal muscle, is maintained at least in part by a continuous bombardment of motor impulses originating reflexly, and serves to maintain body posture..."
Well if you're anything like me that is a little bit too clinical and doesn't clearly explain what muscle tone does. I offer another explanation of muscle tone from About Cerebral Palsy.org that may help break it down better:
"Muscle tone refers to the amount of tension or resistance to movement in a muscle. Muscle tone is what enables us to keep our bodies in a certain position or posture. Changes in muscle tone are what enables us to move. For example, to bend your arm to brush your teeth, you must shorten (increase the tone of) the biceps muscles on the front of your arm at the same time you are lengthening (reducing the tone of) the triceps muscles on the back of your arm. To complete a movement smoothly, the tone in all muscle groups involved must be balanced. The brain must send messages to each muscle group to actively change its resistance."
Okay, now that we have a better understanding of what muscle tone does, controlling our physical movements, we can get a better sense of what parents of children with Hypotonia are trying to overcome on a daily basis. To paraphrase John Hopkins, the muscles are taking a longer amount of time to respond to "contraction stimuli" (bend arm, lift head) and as a result are often not able to maintain the contraction for long periods of time. This causes them to lose control and go kinda limp like cooked noodles (my words) and is the reason people also call low muscle tone "floppy infant syndrome."

So, as a normally functioning adult, when I decide I want to lay on my tummy and prop myself up on my forearms it doesn't require much effort. Without any real thought or difficulty my brain sends a message to my muscles, my muscles take the appropriate actions, and I am quickly in the desired position. It is the opposite for our daughter Rae. She is placed in this position by an adult, propped up on her forearms, her head wobbles from side to side (lack of head control), her arm muscles start to become tired after about 5-10 seconds, her head becomes too heavy to hold up, her muscles release, her head drops, and after this cycle repeats itself a few times she becomes exhausted and will sprawl out on the floor like a backwards Vitruvian man. With time her endurance will steadily increase, but it is a long developmental process with no guidelines of "normalcy".

The video below was taken when Rae was 13 months old.

video

Wednesday, November 7, 2012

Sun Beams: Adventures in Self Feeding

Whenever Rae is given the opportunity to feed herself she usually attacks her food with gusto. Her hands smear whatever culinary delight I tossed together all over her high chair tray (or the restaurant table/floor...don't judge...I don't have to clean up the mess). Self feeding takes great effort on her part. Her fine motor skills are not yet refined and we recently found out she has some swallowing issues. That being said, I have to admit I laugh quite a bit watching her cram asparagus, broccoli, roast beef, chicken and/or noodles into her mouth. So, without further ado I present...

Rae's Adventures in Self Feeding:

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This is an earlier video & it was amusing watching her little hands chase blueberries all over her tray.

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 We order Chinese and have a girls night with Mimi
whenever Daddy goes away for business,.
This girl loves her lo mein noodles!

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Rae may not appear as enthusiastic about eating roast beef, but I assure you
she was mad about it and did not want to stop. We had to take the bun away
because it was creating a gummy mess on the roof of her mouth.

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I must admit, I also suffer from some texture issues and having to pick Rae up after
a self feeding session involving buttered noodles is NOT my idea of fun.


See all those slippery noodles piled onto her tummy! Ick! 
They were everywhere including inside her diaper! 
I held her out in front of my body (heaven forbid her greasy body touches my shirt)
and made a b-line to the tub!



This girl loves her asparagus!

While I may not enjoy picking up (shudder) my buttered Lil' Foodie after one of her adventures, 
I know it is one activity she truly enjoys.