Crafts: Sand Bagging

A few months back our PT was using a sandbag during one of our therapy sessions. It came in handy because the weight of the sand, once distributed across Rae's hiney, kept her from rolling onto her back which is her comfort position. Unfortunately, when Anna was gathering her things, I noticed a small trail of sand following the bag. Oops! I guess after years of use the bag just finally gave out and that gave me a great idea. I'll make my own sandbags and I'll make them better!

So my Mom and I put our heads together and came up with these:

Three sandbags with removable, washable covers.

Now, we don't know how much each bag weighs, but we guesstimate somewhere between 5 and 7 pounds. The material we used for the actual sandbag is blackout material used for curtains. It was sturdy, non-pores,  and could be wiped off. The covers close by folding over like envelopes and are made out of  snuggle flannel. I think it makes them more versatile for PT's that see children every week throughout the year since they can change to cover with the holiday or season. They were pretty inexpensive and when I compared them to sandbags online I saved a decent amount since they only sell empty bags for $9.00+. Go us!

Rae using her new sandbag.

I hope Anna likes them because she's getting two. Maybe if she knows any parents out there that could benefit from having a couple I'd be willing to make them up and sell them for a fair price. I would offer to ship them, but since I sew the bags shut with the sand inside the shipping could be pretty high. They are still in proto-type phase and need to be field tested, but I think we did a good job.

A Boring Pregnancy

My doctor warned me to never tell another pregnant woman about my boring pregnancy. Every visit it was almost the same conversation...

2 weeks from due date.

Dr. S: "Any sickness, discomfort, concerns?" 

Me: "Nope. I haven't been sick at all. I eat what I want. I don't feel uncomfortable. In fact I mowed our back yard this week (I was 7 months pregnant). Is that ok? My husband is worried I'm doing too much." 

Dr. S: "Riding mower or push mower?:

Me: "Push." (how is that relevant?) 

Dr. S: "Sure, as long as you take breaks and keep hydrated. It's good exercise. What about concerns?" 

Me: "None. I wish she would move more (maybe that was a clue), but other than that I'm good. It's been a pretty boring pregnancy"

Dr. S: "Every pregnancy is different. Some babies move more than others. She appears to be growing fine. Boring pregnancies are good. Just don't tell other women, they'll hate you." 

Me: "Oh...ok. Thanks. See ya in two weeks." (Why would they hate me?)

So, I truly felt confident in my pregnancy and enjoyed every minute of my growing baby bump. That's not to say that I didn't get tired or grumpy. I did have a difficult time finding a comfortable position in which to sleep and was often either too hot or too cold. I worried about her movement and drove my husband mad because I would start fretting if, after five minutes, I didn't feel her shift around. He'd see me poking my bump and shoving Rae from side to side in an attempt to solicit movement. Most of the time she ignored me. I'd tell her she was acting like her Dad and then I'd pout. Every once in awhile my efforts were rewarded with a sound kick which only encouraged me to poke at her some more. Poor baby.

Rae was my first pregnancy and probably my only, but that's a different story. It was new and exciting. I wanted to cherish the alone time with her because I knew once she arrived I'd have to share her with everyone else. I had pictures taken, gained about 45 pounds (I'm about 5'9" so it wasn't too bad), had high blood pressure once (when we were making the decision to have a C-Section), push mowed the lawn, decorated Rae's room (with help), ate berries till I was ready to explode (a love that apparently passed on to Rae), and baked like a mad women. I'm pretty sure the guys that work with my husband gained a few "sympathy" pounds due to the amount of sweets I sent to them. It was a wonderful, exciting, boring pregnancy and I relished every moment.

Moo-Shu helping get ready for Rae.

Cat-astrophe Averted!

Great News! The reinstated regiment of cleaning and locking up my three kitties has paid off and so far (knock on wood) our PT is no worse for wear.

*huge sigh of relief*

When I first wrote about the possibility of loosing Anna, it was surprising to some that I felt so close to our PT. In my defense, she comes into our home, works with our daughter every week (that we're in town) for an entire hour, offers me support, suggestions, her corner chair on wheels, smiles, encouragement, and just about anything else she is able to give. Anyone would feel close to someone that does all that for your family, but those aren't even the most important thing she gives.

Anna trying to sooth a very mad Rae.

She gives her affection and love to our daughter and that makes a HUGE difference. It is a connection that goes beyond just your random doctor or the specialist you see twice a year. She's a friend.

Recently. we missed three therapy sessions with Anna due to a death in the family. After missing week number two I was about to become a basket case because I knew I didn't have all my therapy "stuff" and therapy is the only thing we have.

When we returned, I was excited to know that therapy would resume and at the same time dreaded the "clean-up." Now, I don't expect my husband to run around the house with a vacuum like I do so it was no real surprise that our couch was covered in enough hair that it looked like we cloned a cat. Tufts of fur were dancing across our floors and the cats looked like they ruled the roost. I had to nip that in the bud right away...Anna was coming in a few days and this placed needed to be hair free (like there is such a thing).

After extensive fur removal, we were finally as ready as we were going to be for our reunion with Anna. Rae was dressed, fed and watching Curious George while we waited for the door bell to "buzz."

"Buzzzzzz!"

I scooped up Rae and opened the door. It had been three weeks and there was no telling how Rae was going to handle the reinstatement of her therapy routine or the reunion with Anna.

She SMILED!

Her grin was from ear to ear, her legs started swinging, she started babbling, and even giggled a little. She remembered Anna and was happy to see her. I was so thrilled that she recognized this wonderful woman who works with her even when she is behaving like this...

Anna is, like another mother/blogger* said, our daughters friend and nothing can replace the important role she plays in Rae's life. Thank you Anna for sticking it out in spite of your allergies.

*If you are interested in reading about the journey of another family please visit Dana Nieder's blog Uncommon Sense.

Living in Amsterdam

I'm going to ask you to please read Welcome to Holland by Emily Perl Kingsley, before continuing. This is not going to be a long post because the next few links will say it all and nothing I can say sums it up better than Dana Nieder (uncommonfeedback@gmail.com*), the author of Uncommon Sense.

Tonight I stumbled upon one of her blog postings titled Amsterdam International, thanks to a Facebook friend, where she offers a more in depth description of starting a new unexpected life in Holland. She shares how just getting out of the airport is an emotional maze for new ex-pats finding themselves stuck in Amsterdam. If you read Welcome to Holland, written in 1987, the writer focuses on the beautiful ending, but glazes over the middle of the trip. Dana fills in the blanks. Sure, it may come across a little harsh, but her honesty is refreshing. She doesn't try to sugar coat the emotional turmoil and guilt felt by these parents, myself included, and by sharing her own experiences she tells us that it is okay to feel these emotions.

Since starting my own journey about a year ago, it has been a series of ups and downs. There have been times where I felt that my own acceptance of Rae's condition was close and then...WHAM! Something else popped up and we (read "I") have to virtually start over. Dana's words are a source of encouragement. She reassures us that there is an exit from this airport and once we manage to make our way through the doors (with all our baggage) we'll be able to see the tulips and windmills. Sure, it's not Italy, but Holland's not too bad once you make it out of Amsterdam International.

*Dana has encouraged readers to repost and share "Amsterdam International" and all she asks in return is that she is cited and her email is offered in case anyone would like to reach out to her. 

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.

Struck by Cupid

I took this photo last year when I was going to attempt a themed photo for every month so I could make a calendar for my Grandmother. That didn't happen...life got in the way. This year I didn't have time to do a newer version due to a family emergency. Maybe I'll do one anyway...

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.