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.

Interchangeable Me

When I worked in the corporate world, especially in customer service, I felt like I was interchangeable with the next person. The company didn't care who I was or what I was capable of achieving because they could easily change me out for the next unemployed person in line. Anyone could just answer the phone or send an email. I was just another gear in the corporate machine. How demoralizing!

I found some solace outside of the work place where I felt like I had value and purpose. I had family and friends that loved me and knew me. They knew I was irreplaceable. That there was no one else like me in the world. How wonderful!

Fast forward to the present...

Once again, I feel interchangeable. Only this time it is because my daughter doesn't appear to miss me or want me.

Rae's low muscle tone appears to be weakest in her arms so she never reaches for me. Not when she's crying. Not when she's hungry. Not when she's tired. Not ever. Her arms, for the most part, just lay at her side or she sticks one hand in her mouth. The most I can coax out of her is placing her tiny hand into mine, but that is a very rare occurrence. In all fairness, she doesn't reach for anyone so that should offer me some comfort...right?? This weakness also limits her ability to use sign language.

Since she is non-communicative, she also doesn't call for me, not in the traditional sense anyway. She will screech from her crib when she's awake and ready to get out, which is pretty standard. She will scream bloody murder when she is hungry or when she's ready for bed. I have no doubt that our mailman could walk into her room and pick her up from her crib, shovel food in her mouth, and tuck her in again. As long as she gets what she wants, when she wants it then she is good to go.

She isn't mobile either. No walking. No crawling. Some rolling (very little). So, when I walk away from her...she just lays there. I see other children crawling as fast as they can trying to track down "Mama" because she went to the bathroom. I, on the other hand, am one of those rare Moms that receives complete and total privacy when using the bathroom. While some may envy that privacy, I doubt they'd trade places with me. Seriously, NO one wants this for their child no matter how intrusive they are being. (On the flip side, no parent wants their child so anxious that they can't even change clothes without a nuclear melt down occurring.)  Either extreme blows chunks and I just wish we could land somewhere in the middle.

Once a week, Rae stays the night with her Mimi and G-Boss (Long story short it was a nickname that stuck and turned from THE "Boss" to "Grandpa Boss" to "G-Boss!") and not once during these overnights has she cried for me. At first, I thought she might be a little upset, but after the first two or three weeks I stopped expecting (read as hoping for) that phone call saying, "She won't stop crying. She wants YOU."

It stings. Feeling like your child is okay without you, doesn't really "want" you and anyone can just glide right into your place leaves a deep wound in your heart. I know this is probably temporary, but it still hurts. I'm sure there will be a time when I will long for some privacy or wish she would just calm down when I step out of a room, but right now...well... I want to know that from time to time she wants ME and that only I will do. Until that time, I will do my best to keep it all in perspective and cry till my eyes burn when I need to release the pressure.

Genetic Gumbo

No doctor appointment quite prepares you for an appointment with a Geneticist (Dr. M). This doctor is our final hope, our last stop, the end of the line in terms of our search for a cause to Rae's Hypotonia. They don't just ask you the usual questions...nope...they want as close to accurate accounting of your family medical history. No detail is too small and no family member is too distant. If you even have an inclining that your third cousin twice removed on your mother's father's side of the family may have had something remotely similar to what they believe your child has they WANT to know. It's exhausting!

Genetic Gumbo Recipe:

• Diabetes - we're stubborn and still eat as we please...most of the time.
• Heart Disease - double dose.
• Bad Knees - both my Great Uncle and Dad are bionic and trigger metal detectors.
• High Blood Pressure - some of this is self inflicted...what can I say we're wound a little tight.
• Strokes - "Anymore, anymore...damn it!" was about all my Great Aunt could say after hers...well that and singing hymns, go figure.
• Hip Malformation - can be painful and makes me and my Dad walk funny at times.
• Penicillin Allergies - lost an Uncle because of this allergy.
• Arthritis - are you eating celery or were those your knees making that crunching sound.
• Gall Bladder Issues - that's right we're a gall-less family.
• Kidney Issues - stones...enough said.
• Fibromyalgia - only one person to my knowledge.
• Dementia/Alzheimer's - this is why I journal because I'm sure I will forget everything at some point.
• Miscarriages - none for me thankfully, but she asked about family history so in the pot it goes.
• Seizures/Epilepsy - distant, but apparently relative.
• Psoriasis - which she thinks Rae has on her eyebrows and maybe scalp (yippie).
• Ankylosing Spondylitis - an obscure weird genetic spinal thing where the bones slowly fuse. together and you can't move. In my Dad's case it's his neck.
• Macular Degeneration - eventually causes blindness (I wasn't aware of this at the appointment).

Simmer for 20-30 years and WALA! You have a member of my family.

I know I missed a few ingredients, like Cancer (at least four cases), but it honestly slipped my mind (How does that happen?) and I keep trying to reach out to other family members to find out if there is something we all have dealt with, but don't realize it as a possible genetic thing. Dr. M also asked about my pregnancy and delivery. Which was well for lack of a better word...boring. Don't get me wrong the pregnancy was exciting and delivery (via C-section) was a thrill since our wait for Rae was over, but it was a very uneventful pregnancy. Hallelujah!

After playing 50 questions, it was time for her to give Rae a physical assessment, which was equally as thorough as her questions. She checked Rae's reflexes, her palms, her eyes, her ears, the bottom of her feet...basically every teeny square inch was inspected. Dr. M noticed that Rae responded to some simple commands like, "Do you want the light thing-a-ma-bob? Reach for it..." and of course she did. Rae already has listening to others down better than listening to her Mother. I can't even seem to get her raise her arm(s) (I'll settle for one) when she wants to be picked up.

Once the exam was completed, Dr. M went over how she would like to proceed...with, you guessed it, more testing. What a surprise. She informed us of  Pompe disease (there are so, so many possibilities) that she wanted to test for and apparently Duke University was doing a free study (Yippie! No bill!!). We took our lab orders and went for yet another blood draw. This time I made her Dad hold her because, honestly, I was really tired of always being the "bad" guy when it came to the not so fun stuff. Much to my surprise, dismay, irritation, and thankfulness Rae didn't even react to the sting of the needle. Grrrr! Don't get me wrong, I am happy she didn't have an emotional meltdown, but of course she didn't even make a peep when her Dad was the one holding her arm while it's being poked.

There's no crying in the lab...

Just one more...

All done!

Bandaged and no worse for wear, we strapped Rae into her stroller, made our way to the parking lot, loaded up and headed home (after grabbing lunch at Firehouse we were starving!). It felt like we were there all day, but it was only a couple of hours. Now the real waiting begins...we don't get all of the results until April 26th!

Lazy Baby

From time to time I am guilty of telling my daughter she is being lazy about one thing or another. Usually, it is when she doesn't want to hold her own bottle. I know Rae's abilities better than most and definitely better than strangers so I feel like my use of the word "lazy" doesn't hold the same connotation as some random person. Honestly, I probably shouldn't say it to her at all, but that is not the point and I am trying to remove that particular verbiage from my speech.

This being said...

The other day we were sitting in the waiting room of Rae's Pediatrician, Dr. A, and she was happily laying down in her stroller. We were there for a standard check-up, which was a nice change of pace, and she was thirsty, but didn't want to put any effort into holding her bottle. I'm pretty sure that she believed if she keep playing the "I'm too weak" game I would eventually cave in and hold it for her. Ha! She was so wrong. I refused to play her game and just kept telling her that she was capable of holding her own bottle.

During this battle of wills, an elderly woman started shuffling our way. As anyone with a baby will tell you their cubby, pinchable cheeks seem to have a gravitational force all their own and it seems no one is immune to its pull. So, it was no surprise that she peeked into Rae's stroller and started a conversation with me. Unfortunately, while she made her way towards us she overheard the one sided discussion I was having with Rae about her unwillingness to hold her own bottle.  So, I immediately started bracing myself for the inevitable questions and I was not disappointed.

EW: "How old is she?" 

Me: (Yes, I know, I know she's old enough to walk just go ahead and ask) "16 months." 

EW: "Oh, well she should be more than capable of holding her bottle."

Me: (*sigh*) "No, it's okay she has some difficulty and doesn't always want to." 

EW: "Is she walking?" 

Me: (Deep breath, you knew she was going to ask) "No, not yet."

EW: "Well, she's just being lazy."

Me: (Did I just hear that? Seriously?? Geez! Deep breath, she doesn't know any better. Just smile and nod. If you correct her it will be awkward and then she may ask more questions.) *uncomfortable smile and gentle nod*

EW: *quietly shuffles off to an empty seat*

What I actually wanted to say in a slightly snarky tone: "No she's NOT lazy. She has a medical condition. Thanks for the reminder." Sometimes these conversations are like having alcohol rubbed into an open wound. Burn, burn, burn! Unfortunately, at the time, I lacked the ability to verbalize any response much less one that wouldn't be considered rude (no point it both of us being impolite). So I swallowed my words, bit my tongue, offered a slight smile and nodded. I do that a lot.

Sometimes, it's because I don't really want to open a dialogue about Rae's Hypotonia. I may be in a very vulnerable place that day and tears will appear with the slightest provocation. Other times, I know they don't intend any harm in their questions or comments and by pointing out their social faux pas it makes every one uncomfortable. I don't like making people feel uncomfortable (intentionally or unintentionally). More often than not, I know that by stating Rae has Hypotonia it will solicit any number of questions to which I usually have no answer, advice that I really don't want, or pity. I HATE pity.

I don't want to be pitied. I have a beautiful, smart, champagne haired, blue eyed daughter, with a lovely countenance, sparkling smile, impish grin, even temperament (most of the time), contagious laugh, and a crazy sense of humor (she's into physical comedy). She has the most pinchable, dimpled cheeks (of course I'm biased) and when she gazes at people (even strangers) she makes them feel like they are the only important person in her world (except for Moe-Moe the monkey or Elmo).

These are the reasons I didn't correct the elderly woman's assumption that Rae was "just being lazy" and then ranted to my support team.  Later that evening, I sat in my living room repairing the tiny fissure she created in my ostrich egg.

8 Degrees

My gut was right again. I'm starting to get really tired of being right, which is a big deal coming from a family of Germans who are "always right." I think, more than anything, I'm getting tired of being right about the bad stuff. I was right about Rae's physical development being off (Hypotonia), I was right about her having Infantile Scoliosis, and now I was right about our follow-up not baring good news. I've been right about equally upsetting things recently as well, but that's a whole other story.

Yesterday, Rae had her follow-up visit with Dr. S, her Orthopedist, and I would have loved to come home and report that her Infantile Scoliosis was maintaining or regressing below the initial 20 degrees that was reflected in her x-rays last September. However, that is not the case. The "C" curve has increased by 8 degrees with a +/- 5 degree margin of error. In which I find no comfort. Now, I know that doesn't sound like much, but when your looking at a condition that slowly progresses with time and more rapidly with every growth spurt and your child is only 17 months old...well that's just a tad bit upsetting.

To make matters worse, information my husband and I have read doesn't offer a positive spin on the less invasive forms of "treatments" for scoliosis. This has been reinforced by Dr. S, who didn't feel like the options available would be of any true benefit, but he's open to suggestions or, if we press it, placing Rae in a brace and/or authorizing more therapy. We also have to consider the effect a brace could potentially have on Rae's physical development in relation to her Hypotonia. If the brace keeps her straight and holds her in place then her muscles wouldn't have to work and would not become stronger. It's a double edged sword. The whole thing just feels hopeless and, while I know it isn't, I feel like I'm ready to grasp at any straw presented that may offer some benefit. Notice, I don't use the word benefit instead of cure because much like her Hypotonia there really isn't one.

Dr. S believes, since Rae is Hypotonic, that her Infantile Scoliosis is actually Neuromuscular Scoliosis. Okay, well that's just comparing a Pink Lady apple to a Sundowner apple, both apples have a similar taste and come from the same fruit parents (Golden Delicious and Lady Williams), but their color is slightly different. Similarly, there is no real difference between Idiopathic Scoliosis and Neuromuscular Scoliosis other than the cause. The treatments for both are the same and vary depending on the degree and type of curve.

So here are our options (listed in order of desirability):

• Observation - Which is what we are currently doing and it isn't really recommended by other medical professionals since it delays treatment.
• Therapy/Exercise - We are already have PT in place and Anna and I will be discussing this new development tomorrow. Exercises will have to wait until she is older due to their physically complicated nature: Scoliosis Exercises.
• Chiropractic - My husband is not a huge fan of this option, but I'm willing to give it a go.
• Homeopathic Alternatives - Like the Bach Flower, which is only one of many, and I have my Aunt checking into these options (she has a Doctorate in Homeopathic medicine).
• Bracing - It's like encasing your child in a turtle shell. Here's an example: Providence Brace or when they are older this form may be an option Spinecor Brace.
• Casting - Which varies depending on the type of curve and is usually done in case where the child is young (toddlers). Dr. S doesn't recommend casting and it can be quite the ordeal as evidenced by fellow blogger Emily, who writes about her son, at Infantile Scoliosis - J's Diary.
• Scoliosis Boot Camp - Which utilizes various manipulation contraptions to readjust the spine and correct curvatures. This isn't a possibility until she is older.
• Surgery (just a short sample of surgical options)
• Spinal Fusion
• Harrington Rod Surgery
• Vertebral Spine Stapling

In light of this news, I am going to make every effort manageable to be proactive and try to keep a positive outlook. Keeping in mind that I must also be realistic (I have already reviewed the application for the Shriners Hospital for Children). I'm so thankful they don't take household income into consideration or we'd be screwed with a capital "S". In addition, I am going to do my best to see the good things, not just the bad, and take comfort that I have wonderful family and friends standing beside us every step of the way.

To quote my Mom:

"Damn, that can be depressing, but that's counter productive and I choose to be resolved (right after I scream). We are all in this together. We can do it." 

A Berry Breakfast

I consider myself very fortunate that Rae is so open to eating new and different foods. Who would have thought that my 16 month old daughter would enjoy eating curry, fish, asparagus, garlic, kiwi, tomatoes, you name it and Rae will probably eat it. So, it should come as no surprise that she LOVES eating berries since I couldn't get enough of them during my pregnancy.

I would sit and eat bowlful after bowlful of berries. I'd waddle into my local Publix (best store ever) and come out carrying raspberries, blueberries, blackberries, and strawberries. I'd gleefully return home with my loot, washing these juicy delights, and toss them all into a small mixing bowl. To my husbands disappointment, I'd tell him about my sweet purchase and he'd come home hoping to enjoy some berries only to find that I'd already eaten them. All of them! I'd sheepishly apologize and promise to buy more the next day and not scarf them down as soon as I walked in our door. Oops. Guess I shouldn't make promises I couldn't keep. Poor Hubby.

This obsession with berries even applied to bags of frozen strawberries. I'd sit in my recliner, clutching a bag of strawberries, chewing on them like one would chew an ice cube. My husband looked on in amusement with a touch of horror. I rationalized that eating an entire bag of frozen strawberries was better than eating a pint of ice cream. So, I continued to gnaw on my frozen treat until the bag was empty.

Whether or not babies develop an affinity for the food their mother eats while carrying them is true, I do know that Rae LOVES berries. All kinds of berries. She gobbles them up. The first time she got a hold of a whole strawberry we had to use the jaws of life to pry her Sassy Teething Feeder from her berry stained hands.

So, yesterday morning when I offered her a breakfast of fresh mixed berries and a pancake it was no surprise that she ended up looking like this:

Yup, that's a raspberry seed on the edge of her nose and you can't see the other side of her head, but her ear was covered in blackberry juice. That's my girl! As adorable as this photo is the most exciting part of our morning was watching her pick up her own berries and shove them in her mouth. It may not sound like much, but to a parent of a Hypotonic child that movement can be as thrilling as crawling.

Hypotonia: Part Three: Treatments

Here's the final installment about Hypotonia. I hope that these postings have been informative and helpful for everyone that offers us so much love and support and anyone out there in a similar situation. Sometimes, when someone inquires about Rae's condition it's difficult to find the right words and I hope that these postings have helped.

Treatments

One word: Therapy

Therapy can consist of physical, occupational, and speech either individually or combined. In some cases children may also work with sensory stimulation programs depending on the individual needs of the child.  I wish I could off more, but that's really all we know to do. I've read many parents say they just treat whatever symptoms present themselves at the time and have quit searching for a cause.

Rae's play area complete with exercise peanut ball.

There's no magic cure-all pill, no surgical procedure, no fairy godmother that can change the situation and honestly, that's heart breaking to admit. I struggle with that fact on a weekly, if not daily, basis. We may not be able to "fix" her, but we can make her stronger! That's why therapy is so important.

Rae has physical therapy (PT) once a week for an hour. Some weeks are better than others and we have had progress, but every week is different. During the rest of the week it is up to us (family) to make sure she gets additional therapy. The "routine" varies each day and when we're thrown off our routine it can take a week to get back on track.

We try to show her the proper way to sit up, lay down, roll over, and army crawl.

We make her use her hands to hold her bottle, grab small pieces of food, and reach for toys (even if that toy is your nose).

Beeping Great Grandpa's Nose

 We use a sensory brush (almost daily), peanut exercise ball, various toys, and a sensory box full of unpopped popcorn. 

Using the sensory brush

Working in her sensory box.

These therapy services are provided through the Early Intervention Program (a.k.a. Part C service) which is part of the federal law, Individuals with Disabilities Act (IDEA). We are very grateful that this type of assistance is offered and until I learned about the program I felt lost about what steps we would take after her diagnosis of Benign Congenital Hypotonia. Here are some links that I have found helpful:

• National Dissemination Center for Children with Disabilities - info about Early Intervention
• Early Steps - Florida's Early Intervention Program
• Exercises for Hypotonia - a resource for Down Syndrome that offers info on Hypotonia
• Brain & Gym Exercises - from LIVESTONG
• e-Special Needs - toys and adaptive equipment, Amazon is a good resource if you know what you are looking for and sometimes I just surf for toy ideas.
• iVillage Hypotonia Message Board - parents offering advice and support

With time and patience Hypotonia can get better, but it does not go away and in most cases is life long. From personal experience there is one other treatment I can offer to the parents, family and friends of children with Hypotonia...chill. Just chill. You can't speed up their development to the point they are back on the "normal" course. I drove myself batty for the first couple of months trying to make every moment therapeutic and instead felt deprived of the joy of just being with Rae. Be aware of the day to day opportunities to use therapy, but don't wrap yourself so tight that you forget to just play. Play is an important part of your child's development. So, chill out, sit down, and play.

Hypotonia: Part Two: Causes & Effects

Causes

Never underestimate the passion of a parent looking for the cause of their child's medical concern. I constantly feel like I'm on CSI trying to discover who the bad guy is and all I have to work with are mixed up alibis and a hunch. Sure Down Syndrome is a suspect, but he was having dinner with Cerebral Palsy. Back to the drawing board! With each specialist, x-ray, MRI, CT Scan, EEG, NVC (nerve conduction), blood draw, and examination another clue is uncovered (we hope) or we realize that the suspect of the week is innocent and we are back to square one. Unfortunately, Hypotonia is generally seen as a symptom and usually not a stand alone diagnosis so there are hundreds of things (our Neurologist's words) that can be ruled out or in, depending on your point of view.
The John Hopkins Hypotonia Center offers an incomplete short list of 56 different known causes of Hypotonia with suspects like:

• Down Syndrome
• Cerebral Palsy
• Autism 
• Muscular Dystrophies
• Prader-Willi Syndrome
• Pompe Disease - Rae just had this test done and we are awaiting results.
• Congenital Myopathies
• Spinal Muscular Antropies - two different types
• Benign Congenital Hypotonia (BCH) - From my understanding it's usually given when there is no other explanation.

With so many suspects to run down it is easy to see how new clues presented by another specialist can play havoc with my case against a different bad guy. How long do we continue the search? Yes, I would like to know what is causing her Hypotonia and hope that there is something that can be done. No, I don't like the idea of her being a human guinea pig with all the different tests. At some point enough will be enough and we will eventually end the search for a diagnosis (just being honest here). It just feels hopeless at times. Especially when a new suspect is tossed into paddy wagon with a rap sheet that includes heart murmurs, enlarged hearts and tongues, and a high fatality rate (Pompe Disease). That is exactly what every parents wants to hear. But, I digress...

Basically, the causes of Hypotonia range from severe to mild and everything in between. There is no easy answer, no magic cure, and no turning back. We all have to chase down the a suspect, gather evidence, and determine if he's guilty or not. It's a long, grueling, emotional investigation.

Effects

The other day I was asked by the geneticist, "What caused you to suspect that something was wrong and when?" I stammered a little during my response because initially I started to have that Gut Feeling close to 4 months of age, but didn't really pursue the issue until almost 5 months. Rae didn't roll over. Seems harmless enough...right? Well, it wasn't. Rolling over is important...very important. Now, 11 months later I realize how important rolling over actually is in a babies development. This is one of the few ways that Hypotonia effects infants and it's a pretty mild bump in a pot hole riddled road.

Here's a short list of complications and delays caused by Hypotonia:

• Rolling over, sitting, crawling, walking, running, waving, clapping
• Speech Delays - communication can become problematic
• Limp limbs that hang down at their sides - Rae doesn't hold on when being held
• Inability to gain proper head control - "Floppy Baby Syndrome"
• Difficulty sucking, chewing, and swallowing
• Constipation - it's all about muscle control
• Respiratory issues/Shallow breathing
• Postural issues - Rae has a "C" curve in her lower spine (infantile scoliosis)
• Joint laxity - dislocations are a greater risk for Hypotonic children
• Poor reflexes
• Slack jaw - the mouth tends to hang open
• Emotional melt downs...mine not hers.

Like many other medical conditions Hypotonia can have a wide range of application. Some children are more severely impacted by low muscle tone, while others are less so. In Rae's case, her arms are weaker than her legs and her trunk's (abdominal area) ability is somewhere in between. She doesn't like to put weight on her arms which is why laying on her tummy and rolling over have been difficult to master and can lead to cries of frustration. Sitting up unassisted is still a work in progress and every time she has a growth spurt she regresses. Her head control has increased, but due to its spastic instability we are are still waiting to put a Wee Ride Kangaroo seat on my bike. Even the most simplest of tasks like sucking a bottle or waving bye bye (we're still working on this one) have been difficult for Rae to master. Basically, Rae's muscles are loose and go from tense to relaxed in the blink of an eye with no warning.

There is no parenting book that can tell you what to expect and the best advice and support I have found is on an iVillage Hypotonic Support Group and the Facebook group called Hypotonic Parent Connection. We are all doing the best we can to encourage the development and happiness of our children and each other. I hope this posting helps better explain the, often chaotic, search for a cause and effects of Hypotonia.

In case anyone is wondering...it's not all work and no play.

Hypotonia: Part One: Definition

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.

The Ostrich Egg

If your a fan of cooking shows like Top Chef or Iron Chef then you've probably seen an Ostrich egg make an appearance from time to time. This egg is the Grandaddy of all eggs. It is HUGE! The average Ostrich egg is almost 6 inches long, 5 inches wide, and weighs in around 3 pounds! The chefs on these shows usually attack this culinary delight with gusto and a hacksaw. No cracking this baby on the top of your counter.  In order to get to that golden goodness locked inside they have to saw their way through the protective shell. So, at this point you're probably asking what this has to do with being a parent of a child with Special Needs...

I need this to develop a a secure, hard, difficult to crack shell around myself. Not to keep people away, but to keep some of the things they say from penetrating my defenses and puncturing the core of my emotions. When everything first started developing (or not depending on how you look at it) with Rae's condition I was so vulnerable to everyone's seemingly harmless words and phrases. I didn't want to be around some people because inside I knew they'd open their mouth and eat their own foot with gusto. Not even realizing that they did it...you'd think they'd their own taste toe jam, but apparently it has no flavor.

Initially things like, "What's wrong with her?" would illicit an emotional eruption inside that would rival Mt. St. Helens and I was almost ready to burn the friendship bridge. Fortunately, over the last few months I've gotten better at controlling those initial responses, but every once in awhile someone still manages to find the chink in my armor. Phrases like: "She'll grow out of it," stated very matter of factly like they are some medical expert when it comes to Hypotonia sends shock waves throughout my body. I manage to choke back any retort that comes to mind, which is usually a very snide sounding, "No, she won't because it doesn't work that way and thank you for reminding me of that little fact." My other personal favorite: "You're lucky she stays where you put her. I have a hard time keeping up with Baby Doe." That one still gets past my guard because what I dream about more than anything in the world is having to chase our daughter around the house. I long for the days that I can't "keep up with her." They can't arrive fast enough.From time to time we also hear the excited exclamations, "Oh, she's getting so big. I bet she'll be walking soon and you'll be chasing her down!" To which my mind screams, "No she won't. We're hoping that maybe she'll walk by two." That one always manages to hit my heart and leaves a burning sensation that lingers for a few minutes.

By working on my Ostrich shell, so much better than chinky armor, I've been able to start nodding in silence with a slight smile and letting them speak their piece. Most people that are aware of Rae's condition don't fully understand it and aren't really sure what to say. So, they generally say whatever makes them feel better not realizing that it sometimes hurts me. Others who are aware seem hesitant to ask questions, probably out of a fear that they'll upset me, so they say generic things that by default sting a little as well. In an effort to not make the situation any more uncomfortable for either party, I have diligently constructed my shell (still working out some of the kinks) and smile without any real comment. Is it honest? No, not really. Is it fair? Nope, life never is. Is it a livable compromise? Yes, but it requires work.

You have to be willing to understand and accept that they don't mean to hurt you and are truly wishing the best. They say what makes them feel comfortable and what they hope makes you feel supported. It is awkward for everyone and a snide or negative retort on my part will only make that worse.

I'm going to leave this with a bit of advice for those out there who have friends or family with Special Needs children.

1. Don't be afraid to ask questions. Sometimes having a better understanding of the need will make your relationship stronger and enable you to support those people more effectively.
2. Listen. For the love of everything you hold dear...LISTEN! If you ask a question be willing to hear the offered answer. On occasion, when trying to explain Rae's Hypotonia, "She'll grow out of it," comes flying out of someone's mouth and I know that it is a futile effort to say anymore at that point.

So, here's to the Ostrich Egg and the new sense of security I feel in having it's protective shell encasing my vulnerability.

Sun Beams: Little Victories

I've noticed that many of my postings tend to feel a little heavy and focus on the burdens and stresses that weigh on my weary mind. I don't want that to become the primary voice of this blog and would like to take the time to celebrate our Little Victories.

1. On December 19th, while waiting for a transaction to be completed at Verizon, we noticed that Rae held and drank an entire 8 ounce bottle...by HERSELF! That is quite the accomplishment considering we have been working with her for over three months just to get her to drink from a bottle much less hold it on her own. We were thrilled! I even took a picture so I could remember the moment. Yup, I'm one of those Mom's. *Say cheese!*
2. In the last two weeks we have noticed an increase in her rolling over . Of course she isn't always thrilled when she rolls over, but she'll figure out she can roll back over eventually. I never knew rolling over was such an important building block of child development (until Rae didn't do it) and we hope it will soon lead to army crawling...maybe...I'm keeping my fingers crossed.
3. Rae is back to sitting unsupported for longer than a minute! We actually reached just over a minute and a half during her therapy session this week!!  We were up to almost three minutes before Thanksgiving then she grew. Every time she has some growth spurt or feels under the weather she regresses a little. It's like playing chutes and ladders and we keep landing on the dang chute...Whee!
4. She now has 16 teeth and is not afraid to use them! While I know this isn't a gross motor-skill milestone I am glad she has a mouth full of choppers. From the time she was 6 months till she was about 10 months it was the only thing I could really point to as a big "yippie" in our home. Other parents cooed over crawling, cruising, and walking...we had teeth. Beautiful, straight, white teeth.
5. When being held, Rae has started holding onto the shirt of whoever is toting her around. Doesn't sound like much until you've carried 20 pounds of rag doll around for more than five minutes. She's becoming quite heavy and that tiny bit of assistance is more than welcomed.
6. Her find motor skills are progressing nicely as we now have battles over picking the puzzle pieces out of her foam floor mat. I'll come into the living room and the frog no longer has eyes or the helicopter is missing its rotor blades. I swear I'm going to flip it upside down and duct tape it together.
7. She is using her arms and hands as a form of expression/communication more often. Waving them around when she's happy, tapping them on her high chair tray when she wants "more," and every once in awhile she will sorta wave. The best one so far happened while I was singing "Little Bunny Foo-Foo" and she started bouncing her arm up and down along with mine. It was a wonderful moment for me and it hasn't happened since, but that one time was just what I needed.
8. Rae has some sensory issues, for lack of better wording, and for whatever reason soft, furry toys that talk really upset her. For her birthday she received a shake and giggle Elmo from her Aunt & Uncle and (much to my relief) she LOVE's it! Prior to this bright red, giggling, muppet she would pull her arms back, scrunch up her face, whimper, tears gathering in the corner of her blue eyes, and shake in fear of anything furry that made noise. Her fear of talking stuffed animals has been overridden by her love of Elmo. Ahhhh...the power of Elmo! (la-la-lala...)

Some of these Little Victories are spread out over a month or more and that is just part of living in a Hypotonic World. Everything is done at Rae's pace and only she seems to know what speed that pace is set and when we may arrive to our next milestone. We are all just along for the ride, supporting her development, celebrating our Little Victories, and doing the best we can to not let the frustrations overshadow the joys of this journey.

A Cat-astrophe!

Some relationships that develop while learning how to navigate in the world special needs will become significantly more personal than others. You may not feel as close to your child's Ophthalmologist as you do their Neurologist. I think it would depend on how often you see that particular specialist. In my case, I have become very attached to Rae's physical therapist. We met Anna through Early Steps and while I was nervous about having a new person come into our home every week that apprehension quickly faded away. Now I look forward to hearing the buzz of our doorbell every Wednesday morning. Unfortunately, our patient/therapist relationship isn't without some kinks.

Tummy time with Anna.

During our initial meetings with Early Steps, I made mention that we were the owners of three, strictly indoor, cats. That means we have cat dander and hair pretty much all over the place. I wanted them to make note of this so we could be matched with a PT that didn't have allergies, especially to cats. In an effort to stress this feline fact, I mentioned at least three separate occasions. Satisfied that I did my part to avoid developing an attachment to someone that couldn't stay I put the potential catastrophe to bed and moved on. Imagine to my surprise, after waiting for two or three weeks for Early Steps to find a PT, when I first spoke with Anna and once again asserted that we are a feline friendly home she admitted to being...you guessed it...allergic to cats!! Like you didn't see that set-up coming a mile away.

Tigger

Houdini and Moo-Shu

Aaaarrrrrggggghhhhhh!!!!!

Well, she was still willing to give it a try and I was determined to do everything I could to make her comfortable outside of getting rid of our cats or pumping her full of Benadryl the minute she set foot through our door. So, every morning before Anna arrives I vacuum our entire living room (including the furniture), chase down the hair balls which seem to multiple over night, and corral the cats into our bedroom. This effort has been richly rewarded by no incident of an allergy flare-up. That us until recently...of course.

Anna and Rae working on head control.

During the holiday season, when everything is hustle and bustle, I was not as dedicated to making sure the above noted measures were completed prior to Anna's arrival. The first week she made no mention of it and everything appeared to be going as usual. The second week the sneezing began and I ended up hunting for tissues. I vowed that the next week would NOT be the same and I would do everything that I usually do to make sure she was comfortable. I was overwhelmed with contrition and apologized profusely for my lapse in housekeeping.

Well, that weekend I received a call from Anna...I was dreading that call because in my gut I knew it wasn't good. She said that for two or three days after her visits she experienced discomfort caused by our cats. I felt horrible and then afraid of losing her. She offered to try another week or we could contact Early Steps and inform them we needed a new PT. Panic was beginning to wash over me. What if they couldn't find someone for another two or three weeks? Who was going to work with Rae? What if the new person doesn't like us or we don't like them? What if they heap loads of guilt on top of the already gigantic pile of guilt I already feel over my perceived lack of follow through? I can't loose Anna!

Rae and Anna playing in her sensory box.

Ultimately, it is not my choice. It is her and that is what I told her. I don't wish her to continue coming here and being uncomfortable for days after. I reassured her, yet again, that I was willing to give it another try if she was comfortable and also willing.

Our next visit went better and even though I am recommitted to making this relationship work I feel like we were just handed our two weeks notice. I don't think I will be completely confident that Anna isn't leaving until another month has elapsed. Here's to my New Years Resolution: keep things clean and contained for Rae's sake. I really don't wish to start over with a new PT.

The People Holding You Up

More than often I get lost in my own little world. I have insulated parts of my life from the rest of the world and not in an effort to protect my daughter, but to protect myself. At times I am very fragile and vulnerable. Kid gloves are recommended from time to time depending on new "developments" (not the kind I celebrate by jumping and down for) in Rae's condition. I close off from the rest of the world, bury myself in research, cry a few times if the need arises, and try to figure out which course of action is the best. It is a cycle many are familiar with and at times leads to a deeper sense of feeling alone.

Then one day my best friend was playing with Rae and stated that she has been worried that Rae wasn't connecting with her and that she too was trying to figure out how to maneuver through this Hypotonic world that we all find ourselves living in. Her statements hit me like a MAC truck. I never thought about how she was coping with her relationship with Rae and how that made her feel. It was an eye opener.

More often than not, I see my world through a tunnel with one primary goal in mind, helping Rae's development progress and finding out what is causing the Hypotonia. This tunnel vision helps me keep my eye on the "prize;" unfortunately, it also obstructs my peripheral vision and I forget that there are others on this journey. Our friends and family are walking with us and are also struggling to cope with the change in expectations we all have for Rae.

I am so grateful for all they do for us... They offer me comfort when hopelessness envelops me. They bring a sense of humor to every situation that merits a giggle. They celebrate the little victories and act like fools with squeals of, "Yea, Rae you rolled over/waved/held your cup!" They are constantly seeking answers and try to find the silver linings within the storm clouds. They listen to me when I fret, which happens a lot, and hug me when I cry, which is often. They offer me words of encouragement and lead me to new resources for help. I would be completely lost without them!

My new challenge now is to remember that they are also taking steps into unfamiliar, and at times terrifying, territory. While we all muddle through this quagmire I am making a commitment to my friends and family to do my best to remember I am not alone and they too might be struggling with Rae's Hypotonia. It is all too easy to get tunnel vision and forget the ones standing beside you...holding you up.

My Letter to Santa

Dear Santa,

I know I haven't written to you in many years, but I never truly stopped believing in the magic you bring this time of year. Now that I have a daughter (Rae) of my own, I look forward to helping her leave you cookies and milk on Christmas Eve and waking her up to the gifts you leave under our tree. I have a few simples items on my Christmas list...really the items are for Rae, not me. They may not seem like a lot of fun like the toys you usually bring, but they will help her grow and develop in the coming year (not to mention some of them will also help her during therapy). These are just a few suggestions and I know you can't bring them all, but even one of these items could be a BIG help.

To make it easier, I made a picture list:

A corner chair with table top.

If you know any local Elves that can help make this that would be great!

3 or 4 Sensory brushes.

Foam Alphabet Floor Squares (5/8" thick)

LeapFrog Magnetic Farm Animal Set

Melissa and Doug Puzzles w/large knobs.

Poppin' Pal's

A Peanut Ball (small).

I don't ask for any material things for myself because, while I may "want" a Nook or new handbag, I don't "need" anything. What I am asking (and praying) for is more patience with Rae during therapy and mealtimes, better understanding of her needs, doctors that will tell me the truth even if they know it hurts, insurance companies and medical billing departments that will do everything they can to help lighten our financial obligation of Rae's medical bills,  and continued progress. Oh and if it isn't too much to ask for...I'd really like some answers.

Sincerely,

Rae's Mom

P.S. I hope you like Snickerdoodles!

The Reality of Dreams

Have you ever had one of those dreams that just seem so real or even somewhat prophetic? I have them all the time. I dreamed a girlfriend's first child would be a girl and she now has a two year old daughter. I dreamed I was standing in a yellow room in my cousins new home, which she hadn't purchased yet nor told me any details about, and the house they were in the process of buying has a yellow sunroom. One time I even dreamed that another girlfriends husband got another girl pregnant (that one pissed me off when it did happen). The most hurtful dream was an argument with my estranged Aunt who told me the only reason I got pregnant with Rae was to "steal the limelight" from her daughter-in-law's pregnancy, because as we all know pregnancy is a competition. But, I digress...

Now, more often than not, these dreams don't come to fruition, but when they do it can be a little eerie. Sometimes, when I realize whatever I witnessed was just a manifestation of my hearts deepest desire or fear, the dreams are a little sad and frightening. The other night was a beautiful exception since I had the most WONDERFUL dream! When I woke up my subconscious had me convinced this dream would become reality during the course of the day. Unfortunately, I took the dream at face value...forgetting of course it was only a dream. So, here's the subconscious manifestation of my heart's deepest desires...

We were all lounging in our living room, like we do every evening, watching a little TV and I noticed Rae doing some different movements on the floor. I've mentioned before that Rae isn't really a "mover" and every tiny, seemingly insignificant movement can be cause for celebration in our home. So, imagine my surprise when I looked down and saw our daughter on her hands (which she totally hates doing) and knees in a crawling position!!! I was thrilled, elated, jubilant, floating on cloud nine...!! You get the picture. She was doing that little baby rock back and forth, back and forth. Then just like that she was crawling! No rhyme or reason...she was off and moving. It was like she decided today was the day and without any difficulty she became a crawler. Needless to say I was absolutely ecstatic! I contained my joy and silently signaled my husband (I didn't wish to startle her in case she stopped) to look at Rae and see that another milestone had finally been achieved. Then with a sense of relief, confidence and pure happiness I stated, "It's time to baby proof the house."

One of Rae's many trips off her blanket.

It wasn't until that evening, when we were all going to bed, that I finally admitted to myself that what was in my mind was only a dream and I felt like someone just popped my balloon. I know in my head that one day she will crawl and one day I will get to tell my husband that we have to baby proof the house, but I wish my heart would become more rational and get on board with the rest of us. For now, we will just continue to corral Rae back onto her blanket laying on the living room floor knowing that someday our dreams will come true. Now if only I could manage to dream that we won the lottery....

Doing "MORE"

So, part of Rae's therapy includes encouraging her to use sign in order to communicate what she wants instead of screeching at the top of her lungs. While this is something that I truly desire to happen, because honestly who likes having their baby yell at them, I become equally frustrated with the idea of becoming Pavlov.

"Rae...Mmmmm....Mmmmm...More?" as I tap my fingers together.

Sometimes she smiles showing me the remnants of her last bite and other times she sits there, staring at me, and after a few seconds starts to screech. So, I try again...

"Rae...Mmmm...Mmmm...More?" promptly followed with a bite of food in hopes it will reinforce what "more" means.

Occasionally, this is met with a modicum of success and Rae will tap her left hand on her tummy or tray (not always consistent, nor the same gesture). Of course this is immediately reinforced with food and me exclaiming, "Yea! You showed me "more!" You're doing such a good job!" As you can imagine, this repetitive process extends her mealtime and, for example, a simple bowl of oatmeal, which generally takes us about 20 minutes start to finish, can now take in excess of 30 minutes.

Scoop, Sign, "Mmmm...Mmmm...More," Feed, and Repeat

The "more" process can be further complicated with the addition of one more step. Instead of just showing Rae the sign for "more," I intermittently pick her hands up and make the "more" sign for her in hopes that she'll start consistently connecting her hand gesture with "more" food. So, now our mealtime steps go like this:

Scoop. Sign, Make Rae Sign, "Mmmm...Mmmm...More," Feed, and Repeat.

As much as I hate to admit this next part (since it will give people the impression that I am not...da, Da, DA...SUPERMOM!!!), I don't always like going through the "more" process during her mealtimes. Sometimes, I just want to get Rae fed so I can move to the next item on my extensive "to-do" list. I then feel immense guilt over not being Supermom and mentally flog myself for not putting Rae's developmental progress ahead of laundry, dishes, cooking dinner, Rae's physical therapy, or dare I say it...taking a shower!

I know what you may be thinking, "It's only 30 mintues. I don't see the big deal." But what you don't know is that the meals are usually followed by the two of us cuddled up in our La-Z-Boy recliner with a bottle of water or milk and trying to encourage Rae to drink more than 1 or 2 ounces at a time. The Hypotonia has made the transition from breast to bottle much more difficult because her muscles have to work harder to make the sucking motion required. For awhile I was trying to encourage her to drink in her high chair and hold the bottler herself. But, that was too much to ask her to attempt given her developmental delays. Our physical therapist, Anna, suggested I hold her so Rae would only have the physical demand of sucking from the bottle and sorta holding it to her mouth.

It worked!!! 

Before this suggestion I was worried about dehydration, but now she will take a bottle and chew/suck it like there is no tomorrow. She has gotten better at holding it, but still needs my support. So, after a meal we sit for another 15 to 20 minutes. These little routines start adding up, chipping away out our day, and before I know it we are starting the entire process over again. Figuring three meals a day, at least four attempts with a bottle, a snack and at least one nursing session...I estimate I spend about three hours of every day sitting in a chair feeding Rae. As a result, I believe I am entitled to not "Doing MORE" every once in awhile.