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.

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 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.

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.

Wishful Thinking

Today I had to run some errands. Nothing major, but I wanted to get some supplies to make a sensory box for Rae (popcorn and a rubbermaid box). There must have been a crazy high demand for popcorn at Target because the shelf was empty. So, I had to swing by Wal-Mart and while driving from one store to another Rae fell asleep. This has happened before and in an effort to keep her asleep I pad the buggy with a cart cover, blanket, and travel neck pillow. So, in Rae's usual laid back fashion, she "shopped" comfortably with her feet dangling over the edge of our buggy.

Shopping in Style

Well, while meandering through the giant aisles filled with Christmas goodies, I noticed a young woman coming towards us with a little girl about Rae's age (maybe a slight bit older) sitting up in the bottom portion of her buggy. As the distance between us decreased I found myself thinking, "I wish I could sit Rae in my cart like that." Of course this thought is something I keep to myself, but there are occasions I find myself wishing Rae was physically able to do what other "normal" children are able to do. While we passed each other in the aisle I over heard the young woman tell her shopping companion that she, "wished ______ (insert girl's name) would lay in the cart like that."

I shuddered and spoke under my breath, "Be careful what you wish for."

You never know what you will actually get when you wish for something. If that young woman knew about Rae's condition and the struggles that come from it, she may have thought twice about thinking she'd rather her young daughter contently lay in a buggy. But, she didn't and from her perspective she might have thought having a child that was so content to just rest peacefully in a buggy while she shopped would be ideal.  For me it is the exact opposite. When I hear other mothers exclaim how they now have to chase their children around the house or baby proof everything because Baby Jane/John won't stay in one place my heart swells with envy. I long the opportunity to chase Rae around the house, but for now she is content to lay peacefully in one place.

So, no matter what is going on try to remember...be careful what you wish for because outward appearances aren't always as ideal as they may seem.

Good Intentions

As any parent will tell you the minute you have that "gut feeling" friends and family with good intentions come out of nowhere. They offer you advice, support, theories, best guesses, sympathy, and hopefully appropriate humor to help lighten your worries. Every once in awhile those good intentions are totally wrong. After my husband and I decided to postpone the MRI and give Rae a chance to "catch up," I was met with some harsh criticism from a friend with good (as they viewed it) intentions.

My friend is a member of the medical community, in the land of therapy, and naturally I turned to my friend for some support and maybe a little instruction on what we could be doing, therapy wise, to assist in Rae's gross motor skill development. While sitting at their home I shed tears of frustration over how the simplest task will be more difficult for our daughter. My friend showed me a few exercises we could do that would help strengthen her core and get her "rolling" in the right direction. Unfortunately, by going to there for assistance I was eventually offered some strong, abrasive, and hurtful opinions.

After Rae's initial visit with Dr. H. I updated my friend on our decision to hold off on the MRI and the doctors diagnosis of Hypotonia. My friend was appalled and couldn't understand why we would postpone the MRI which could help us learn, "what was wrong with Rae!" My friend railed against our decision for well over five minutes throwing out statements like, "maybe she could be given steroids;" "putting her under isn't a big deal they (the hospital) do it everyday;" and implying we weren't making good parenting decisions because it wasn't what they would do. The tone of voice was accusatory, abrasive, and critical of our decision as Rae's parents.

So, now let's discuss the "good intentions" and how they quickly took a turn for the worst kind of intentions.

First, no parent likes to hear the phrase, "What's wrong with him/her?" I hear this and have to stomp down the urge to bare my teeth and attack. Yes, I am new to motherhood. Yes, I am also new to the emotional roller coaster created by having to adjust my definition of what "normal" development means for Rae. Yes, this giant ocean of special needs is intimidating in comparison to my previous life in a tiny "normal" pond. Yes, this makes me more apt to be defensive quicker than some. But ask yourself, if it was you, how would the implication that something is "wrong" with your child make you feel?

Instead of asking a parent "what's wrong," maybe ask them how their child is doing. This offers them the choice of sharing or not sharing something that they may be struggling to come to terms with themselves. Keep in mind that every child develops at different rates. Yes, there are guidelines, but the span of time for a particular skill can be very broad i.e. rolling over should happen between 4 months and the end of 7 months (according to the American Academy of Pediatrics). Since Rae was only five months at the time of her initial visit with the Neurologist we were still within the acceptable/average range of development. Give it time, we don't regret offering her that opportunity.

Second, any time anyone undergoes anesthesia there are risks and side effects. Yes, some of them are  rare, but they still warrant consideration. Since Rae is an infant and unable to lay still for long periods of time she would have to be under anesthesia at a minimum of 45 minutes, depending on the MRI orders. Given the nature of her diagnosis (Hypotonia) the muscles that help control/regulate her breathing may become too relaxed. This creates a new complication and may result in the use of a breathing tube being inserted to regulate her breathing. As her parents, we had to take all of this in consideration and decided to give her a chance to reach her milestones without putting her through what we hoped would be an unnecessary procedures. A quick word of advice, try not to belittle any medical procedure that someone may have to undergo or consider. Any number of things can go wrong and while the benefits may out weigh the associated risks it can still be intimidating to envision your child with tubes and needles attached to their tiny arms or legs.

Thirdly, I have no problem with someone disagreeing with the decisions we make as parents. Everyone parents differently and the choices made by some of my friends/family wouldn't be the ones I would make for my child, but that doesn't, at ANY point, give me the right to bully them. I'm sure there are times some would say I have overstepped my boundaries, it happens, but I try my best to keep some opinions to myself or at least broach the subject in a manner that wouldn't set them immediately on the defensive. Our doctors supported our decision and if they gave us any inkling that the MRI needed be done sooner then we would have followed their professional opinion.

Sometimes it isn't the argument that creates a hostile friendship, it is how the argument is presented. Being bullied over the phone because we made a choice that differed from what my friend believed we should have done has caused irreparable damage to our friendship. I don't feel comfortable sharing intimate details about Rae's condition or our decisions about what course of action is in her best interest. As much as I would like to open up to my friend, especially since Rae has started physical therapy, I just don't trust that another attack won't be launched. I especially don't need to be patted on my head for finally making the "right" decision.

Below are some links about the use of anesthesia for infants undergoing MRI's or surgery:

Live Stong: Side Effects of Anesthesia - More of a layman's approach.
Sedation and Anesthesia Protocol - This one is riddled with medical terminology.
The Society for Pediatric Anesthesia - Q&A - Pretty basic Q&A format.

A Gut Feeling

Early Childhood Intervention System

Most of us have heard the phrase, "I have a gut feeling," and usually we follow that feeling or trust that our gut is accurate. I always believed she was developmentally on track and at worst was just a little, teeny, tiny bit slower than other babies her age. Well, my "gut feeling" started kicking in around four months or so, but I thought it was just "New Mommy Neurosis" and I convinced myself that Rae was just growing at her own pace. At her five month check up with Dr. A. he had me look at the developmental wheel (similar to the adjacent image) to help me identify what she was doing. I hated that little wheel! The minute it was in my hand my mind would just blank and I couldn't seem to remember any physical milestones Rae was making. Finally listening to my gut, I told Dr. A. that I had concerns and he said he did too, but not to be alarmed. He referred us to Neurology at Nemours with comforting words about not fretting. I understood that he didn't want me to needlessly worry about the appointment and that he didn't want to say anything about his own suspicions until a specialist had a chance to exam Rae. My logical mind understood and accepted this...my emotional mind had other plans. After our check-up I sat in my car and cried. I raged about how I should have listened to my gut sooner and not dismissed my initial concerns as "New Mommy Neurosis!" I didn't want anything to be wrong with our daughter.

The call from Neurology didn't offer any quick answers for us since we had to wait almost 10 weeks for our initial visit! Well, it was completely out of my control, not that it ever was in my control, and we just had to wait. Due to work constraints my husband wasn't able to make it to her first appointment. So, a dear friend, Jae, went with me to offer support and be a second set of ears. Lord knows I needed them! Personally I feel it is best to have a second set of ears present to hear what your brain attempts to tune out. Jae even took notes! On to the appointment...

The Nurse Practitioner came into the exam room first and ran through the preliminary tests: reflexes, head/neck stability, and the "superman" to see if Rae held out her arms in preparation for a fall (there were more, but I don't recall them all). Once she completed her exam we waited for Dr. H. to come in and offer his assessment after another less extensive exam. He professional opinion...Benign Congenital Hypotonia (layman's terms: Harmless, Present at Birth, Low Muscle Tone).  Which according to Dr. H. and online resources is a diagnosis that is giving when there may not be any real explanation for the cause. Dr. H. also explained that there could be HUNDREDS of causes for Rae's hypotonia and it would require a series of tests (Blood Work, MRI's, CT Scans) to rule OUT the looonnnngggg list of suspects. He also believed it would be something she would outgrow. This information made me hopeful.

Our first step in ruling out possible causes was having blood work done. This was the least invasive in my mind and was the easiest decision. However, it was NOT the easiest to accomplish. I had to hold my helpless daughter in my lap while extended her tiny arm out for a nurse to poke it with a needle. I never heard my baby cry so loudly. It tore at my heart. To make matter worse they had to poke both of her arms! It was such a terrible experience for both of us, but we managed to "stick it" out and after several "I'm sorry's," some tears, and lots of cuddling we were ok again.

The second step, the MRI, was optional at the moment. Since Rae was only 5 and a half months we decided to wait until she was 7 months before making the decision to have an MRI done. We based this decision on what is considered "normal" development and by the END of 7 months Rae should be able to roll over. We really wanted to give her a chance to meet the milestone in her own time and I attempted to help her the best I knew how...by helping her roll over. It wasn't met with much enthusiasm from our little girl. We were also concerned about using anesthesia on her at such a young age...especially if it wasn't necessary. It was the decision my husband and I felt best about at the time and there were some that were very critical of our choice (more on that later).

In the end Rae's blood work came back normal and that offered some additional comfort to us and we continued working with her at home as best as we could. We hoped it would be enough and that by the end of 7 months she would be rolling over with wild & reckless abandon. A Mother can dream right???