My Obsession with Risotto!

I have to admit my timing for going Gluten Free was poor to say the least!  The North East and many other parts of the country have been dealing with ridiculously cold weather.  Some days I hope my daughter doesn't have school because I don't want to leave the house to have my face torn off by a gust of 0 degree wind.  The only thing I want is to dip a nice piece of soft squishy bread into my big heaping bowl of hot soup!  Although there are lots of Gluten Free options out there and some better than others there is just no replacement for a Fantastic piece of Glutenous BREAD!

While looking for a lentil dish for New Years (I am very superstitious) I came across this Risotto with Leeks, Swiss Chard and Lentil recipe from Martha Stewart.  It was admittedly a pain in the rump to make but sooooo good.  Even my daughter gobbled it up.
http://www.marthastewart.com/355364/french-lentil-and-swiss-chard-risotto

Since going GF I had remembered how rich, creamy and completely satisfying the New Year's Risotto was and have since been obsessed.  I have been obsessed with altering ingredients and finding techniques to make it less time consuming.  I have even found that just plan old risotto is good too! And although I can't find a way to keep from stirring the rice constantly (to get that creamy texture that mesmerized me in the first place) I have found how simply relaxing it can be.....It is a little piece of "me time".  I am not able to do anything but stir the rice and everyone just has to deal with that!

So this is my latest concoction which is not totally originally but hopefully an easy, healthy, satisfying meal the whole family will enjoy.  And yes, Risotto can be a meal.  Add a bean to Aborio Rice and it is a complete protein!  My latest Risotto is made with Quinoa which seems to be the new Super GRAIN!  It is not always popular with my family but this recipe won them over.

Quinoa, Leek and Mushroom Risotto

It is as simple as it sounds.....Ingredients
1 Cup Quinoa
1- 2 Cups of sliced mushrooms (any variety)
2 Medium Leeks
5 Cups of Chicken Stock
1/2 Cup Grated Parmesan Cheese
Olive Oil
Salt to taste

1) Cut ends and stalks of Leeks.  Slice in half lengthwise and slice.
2) Place cut leeks into a bowl of water for about 10 mins.  Pick them out of the water and drain. (this is to remove some of the dirt)
3) Heat Chicken Stock and keep warm
3) Coat the bottom of a sauce pan with Olive Oil and Saute Leeks for 2 mins.
4) Add the sliced mushrooms to the leeks and cook for another 5-10 mins (time depends on size of mushrooms)

* TIP  if your kids are not fans of mushrooms you can chop them pretty fine to hide the texture and speed cooking




5) Add Quinoa and saute for 3 mins.
6) Gradually add the hot chicken stock (1/2 cup at a time) and stir until the liquid from each batch is absorbed.  Continue until you have used all of the chicken stock and the texture of the quinoa is creamy.  Total time about 30 - 40 mins...
7) Add grated parm cheese and salt to tate.
Serve.

I love this dish because my family will actually eat the Quinoa which is so good for you.  It is a protein rich food, loaded with Iron, Fiber and B2 which all kids with Hypotonia need.  I also love it because it is so comforting in the cold winter months.

Enjoy!

Veggie Quesadillas

I want my daughter to like eating veggies so I try lots of different variations and incorporate a veggie into every meal as well as a snack.  As much as I hate to admit it, it isn't working.  I can't say I blame her.  It seems like I grew up in Hidden Valley where everyone loved vegetables.  At the holidays a special treat was turnips and in the summer I think we ate asparagus with every meal.  I can remember sitting at the dinner table as a child literally gaging on Asparagus.  So forcing my daughter to eat all of her veggies doesn't seem right to me.  The rule is you have to eat one veggie and you get lots of praise for eating all of them!

Even though she isn't willing eat a ton of veggies she still needs their nutrients.  Especially with hypotonia.  So I do what a lot of parents do and find ways to sneak them into a meal.  My daughter like me loves sweet vs. savory so I exploit this fact when including veggies.  Thus the Veggie Quesadilla!  This is one of my favorites because it is so easy!  I often make them on nights when we get home late from activities.

Ingredients:
Corn or Flour Tortillas (I have been using corn lately and my daughter seems to prefer them over flour b/c they are sweeter.  They are also less carbs and the ones we use are gluten free)

Shredded Mild Cheddar, Monterey Jack or a combo of the two

Sweet Potatoes

Cauliflower

Shredded Chicken

1) Slice 2 cleaned sweet potatoes in half (with skin) and place cut side down on a cookie sheet coated with olive oil.  I put a piece of tin foil down for easy clean up. Place in a pre-heated 400 degree oven for about 40 mins. (maybe more, maybe less depending on the size of your potatoes)  Place high in the oven so the cut side doesn't brown.

2) Place 2 boneless chicken breasts in a skillet with water and a pinch of salt.  Cover and simmer over low heat until chicken reaches internal temperature of 170 degrees.  Once done cooking slice or tear into shreds.

3) Cut up half a cauliflower head and place in pan with small amount of water and salt.  Cover and steam until tender.

4) Mash the steamed cauliflower and mix in the shredded chicken and cheese.

5) When the sweet potatoes are done (soft to the touch) remove them from the oven and let them sit to cool off.  If you don't have time for that you can handle them with a towel. Scoop the inside of the potato and spread onto two cold tortillas.

6) Spread chicken mixture on one tortilla and cover with the second.

7) Microwave for 30 - 40 seconds (until cheese is melted)

8) Slice and serve.

If you prefer a crispier tortilla you can heat on the griddle.  I serve this with mashed avocado (my daughter does not like spicy) and sour cream.  

Very quick satisfying meal that gets gobbled up.  If you don't have time you can skip the sweet potatoes.  They are just a yummy combination with the cheese.

Enjoy!

Gluten Free Diet. Does it Help Hypotonia?

It seems "Gluten Free" is more popular than ever.  In addition to Celiac disease and gluten intolerance parents put their kids on Gluten free diets for a host of issues, ADHD, Autism and just general behavioral issues.  There seems to be no clear data that indicates gluten is responsible for these issues but if you are left with few options to help your child why not.

I have often questioned a wheat/gluten intolerance for my daughter.  She has always had a very large belly and I have asked several doctors about a possible wheat/gluten intolerance.   My husband has an aunt that has a wheat intolerance and I have an egg intolerance so I didn't see it was out of the realm of possibility.  I was always given a resounding NO.  Kids with a gluten intolerance are emaciated, not over weight.  I let it go since I was feeling completely crazy but it always stuck in the back of my mind.  That is until I read a blog post from a mother who has her children on a gluten free diet.  Her daughter has Hypotonia and she changed to a gluten free diet because her son was sick.  Turns out the gluten free diet also helped her daughter.

When I read the post it was as though she was talking about my daughter.  Similar symptoms, physical features, etc.  Since I had always wondered about gluten/wheat this was the tipping point for me.  I started doing more research about gluten intolerance and was stunned what I found out.  70% of kids with an intolerance are obese.  I also found out that there 5 different types of gluten intolerance, celiac disease is just one.
1) Celiac
2) Non- celiac gluten sensitivity
3) Germatitis herpetiformis
4) Gluten ataxia
5) Wheat allergy - a true allergy

It seems that Gluten ataxia can cause neurological issues like Hypotonia.  So I decided I was going Gluten Free right then and there.  With all of the Gluten Free options at the grocery store how hard can it be?  And it wasn't hard.  We don't eat a ton of pasta or bread so it was pretty easy to make the switch short term.

I do offer a word of caution though.....even making a short term switch be careful your child is getting enough fiber.  Gluten is in Wheat, Barley and Rye so eliminating gluten means eliminating some vital nutrients including fiber.  Short term it shouldn't be an issue but the lack of fiber in our diet was evident within a couple of days.  There are plenty of Gluten Free products that use Flax Meal and Quinoa to offer the fiber, just make sure you look for them.  I also added beans to our diet to help fill the void.  If I decide to adopt this diet into our lives I will have to do my home work to make sure our diet is complete.

So far we have been Gluten Free for 3 weeks and I am not sure it is having an impact.  I guess I have been looking for a big change but I am not getting one.  One thing I have noticed is her mood.  She cooperates, is more independent and doesn't yell and scream.  I am just not sure this is Gluten or just a coincidence.  I also noticed she seems to have more energy but she was coming off an antibiotic when I started the diet and she always seems to have more energy after being on an antibiotic.  Her sleep has not changed.

I have decided to go Gluten Free for one more week and then go back to our old diet.  I want to see if I see a difference.  As far as I am concerned even if the difference is a little more energy and better mood sign me up.  It seems a small price to pay.  Either way when you don't have any answers looking into an intolerance is worth while.  Since it isn't an allergy there is no real way to "test" a food.  I have an egg intolerance and although my body is not allergic (meaning it doesn't produce histamine when I consume egg) the symptoms I experience are enough to steer me clear of any and all egg!

Once again, I don't have any answers just some food for thought.  No pun intended!

Can My Daughter "Handle" Mommy Going Back to Work?

I never intended to be a Stay at Home Mom.  I had planned on getting a Nanny or sending my children to daycare.  I had a good job and financially it made no sense to quite.  Well, someone else had another plan.

A week after I announced I was pregnant my manager informed me that my position had been eliminated.  I would work on a special project until I went on maternity leave and when I came back I would be laid off with a severance package.  I was angry, my husband was elated.  I traveled a lot for work and he didn't think I would want to travel after I had the baby.

As much as I hate to admit it. he was right.  Medically speaking my daughter has given us a run for our money since she was conceived.  Just around 3 months I was put on modified bed rest and eventually delivered 6 weeks early after my water broke at 32 weeks.  She had a lot of issues that no one could explain and I was constantly worried about her.  My company kept me on part time for 6 months after I came back from maternity leave and I hired someone to look after my daughter.  The problem was I couldn't leave her alone with her.  I was afraid she would have trouble breathing or some other issue and she wouldn't know how to handle it.

Shortly after I lost my job, my husband lost his.  It seemed to make sense that I would go back to work and he could stay home.  I wasn't ready for that either.

Now my daughter is 5 and will be entering Kindergarten next year.  I feel like if I don't go back to work now, anything that is relevant in my career will be totally obsolete.  I haven't worked in 3 + years and already things have changed.  People pay less and want more.  Social media is king and I am competing with thousands of people who are out of work.  A Stay at Home Mom who hasn't worked in 3 years (well, ok 4) really doesn't stack up to the recent college grad or the recently laid offer person with more recent experience.

But can my daughter handle me going back to work?  I don't know.  I know she couldn't have handled it up until now.  Well, correction.  She couldn't have handled daycare.  I would have had to have a babysitter come to the house.  That is what I will have to do again.

I know I am not alone in this dilemma.  Every parent struggles with the balance of working and family.  I feel like my scale is starting to tip in the favor of working.  After all kids only get more expensive as they get older and is she better off getting the extra things she will need to succeed in life vs. a parent that is around to give her an after school snack?

Maybe I should be asking the question?  "Am I ready to go back to work?".  Am I ready to accept the exhaustion that comes with going to bed late, getting up early, and having to be "ON" all day?  Racing home from a busy day to rush and make dinner, do laundry and clean the house?  Spend quality time with my daughter after 6 when she is beat?  Run errands on the weekend?  NO I AM NOT!  But I don't think anyone really is......

It is safe to say it will be an adjustment but one most families go through and survive.

Hypotonia Help at School

Once your child ages out of Early Intervention there are several factors that will determine how much help they will get from local services.  The underlying cause of your child's Hypotonia, the severity, your school district and of course the teachers and administrators.  Your child's disability is looked at very differently and just because they qualified for EI services does not mean they will qualify for Special Education services.

I happen to live in a district that is known for a very stringent Special Ed department.  Despite the fact that my daughter had been receiving EI services most of her life she did not qualify for Pre-School Special Education services.

When evaluated, my daughter completed the tasks "good enough" to score a rating that would deny her services.  She was evaluated at home and on a day that she didn't attend school.  Even though by their "standards" she could handle a normal school day I knew she could not.  I knew that when faced with the daily task of attending school all day she would completely fall apart.  

Legally I could fight this decision but I wasn't really sure what I was fighting for......  A 503 plan?  Ok, what do I ask for?  A shortened school day, help sitting at a desk, walking to the lunch room, with gym, on the playground, writing????  She had never been in a Kindergarten environment before so I had no idea what Kindergartners do none the less what my daughter was capable of!

My other option was to send her to school and let her fall apart and then go through the Special Education process again.  Kindergarten is your first real exposure to formal education.  I feel it is the foundation on the building of formal education.  I didn't want this to be a bad experience for her.  I struggled in school and I wasn't going to let this happen to my daughter.

Fortunately I had reached out to a local agency that helps with the Special Education process.  I am not sure every area has this resource but I highly recommend finding out if you do.  Finding them can be a bit of a challenge so look deep.  I made a lot of phone calls and finally found the right combination of search words on the Internet to uncover an agency that was able to help.

Once I found help I was given advice on questions to ask and they made me aware of all of my options.  Based on their advice I decided to set up a meeting with the Principal and request a meeting with her, myself and my daughter's kindergarten teacher.  The meeting was to discuss my daughter's disability and ways to help her get through the school day.  The meeting never happened because the principal was not open to working outside the Special Education process.  Her solution was let my daughter go through Kindergarten screening (during the first week of school) and if she still didn't qualify for help I could pull her out.  I was not happy with that solution and decided to hold her back a year.

I am now going through this process again and am much better prepared.  I cannot hold her back again so I have to fight harder to get her help at school.  I  plan on arming myself with an advocate this time!  I also came across a great article about help at school for kids with Hypotonia.  I found this helpful to look at different areas at school my daughter might struggle.  It also talks about how fatigue impacts kids with hypotonia.  Which is such a huge factor and very often forgotten.

http://handskillsforchildren.com/ot-bits-bytes-hypotonia-strategies-for-success-at-home-and-school/

For those of you going through similar issues good luck!

A Parent's Best Resource is Other Parents!

One thing I have learned in life is I don't know what I don't know until I know it!  I never in a million years would have thought my daughter had Hypotonia because I never even heard of it.  I don't have any experience in the medical field or with kids so there are a lot of things I don't know.  You can't research something if you don't know it exists.
 
I have found as a parent my best resource is other parents.  I used to be a pretty private person.  I always let other people do the talking and didn't share much about myself.  Since having my daughter that has changed.  I talk to everyone about everything.  I am always amazed how much I learn.

At my daughter's swimming lesson I met a mother whose daughter also has Hypotonia.  She told me about her plight with her school district.  They denied her daughter services and she got an advocate for her daughter.  Again, didn't know they existed.  The school district certainly does not tell you they do.  So I was able to look into getting an advocate for my daughter.

At the park I met a mother whose daughter is in Special Education in my school district.  She also has an advocate for her daughter.  She gave me lots of pointers for dealing with the school.

I go could on but the point is I used to think telling the world my problems was a sign of weakness.  I now know that everyone has problems and most people are happy to help with kind words and information.  So I say tell the world your problems, you never know who is going to be able to help.

Support for a Child with Hypotonia.

My daughter's disability is mild.  When people first meet her they don't know anything is wrong.  She is very cute and bowls you over with her incredible smile.  Then they spend more time with her and they start to see something is wrong but are not really sure what it is.  I have often told parents that she has a Muscle Disorder and I get a kind of "oh, so that is it" reaction.  I am fine with that.  Hypotonia can be mild to severe and can come with a host of other issues.  I am glad my daughter doesn't necessarily wear her disability on her sleeve.  But it doesn't make me worry about her any less.  

Last year my daughter's pre-school teacher suggested that I have her evaluated by the school district for Physical Therapy.  I had her evaluated.  She scored very high on the Psychological piece and marginal to low on the Physical Therapy piece.  The PT said that she had flat feet and it was causing all of the other issues.  Order these orthotics and in a month you will start to see some improvement.  Let's just say that was WRONG.

Long story short she did not qualify for Special Education services within the school district.  Despite the fact that the PT did not evaluate her in a classroom setting and was totally wrong with her assessment they said her Physical Limitations did not impact her ability to learn.  My daughter can not stay seated in a chair for 5 mins and IT DOES NOT IMPACT HER ABILITY TO LEARN?  Come on!

I ultimately made the decision to enroll her in another year of Pre-School.  I felt she wouldn't get the support she needed to survive Kindergarten.  I want her to like going to school and overall be happy.  This won't happen unless she gets extra support at school.  I realize that budgets are tight and there are lots of kids with much worse disabilities than my daughter.  But at the same time my daughter is the type of kid that is destined to slip through the cracks her whole life and I don't want that to happen.

So we are at that time of year again and I have to make the decision about Kindergarten.  I cannot hold her back another year so I have three options.
1) Send her to public school - free
2) Send her to the private school (small class size) where she goes to pre-k - $6,000 (that is on top of the $4k we just paid for an third year of pre-school)
3) Home school - not really an option b/c I would lose my mind

I am currently in the process of having her evaluated by the school district again.  We have gone through a lot agony, time and money getting a diagnosis for her.  I have been told this will help her get special education services.  We will see.  I am still faced with what is in the best interest of my child.  I am grateful that we are able to afford private PT and enroll her in private school.  For some that isn't even an option.  At the same time we make a lot of sacrifices to do this and I wonder how long we can keep it up.  It also makes me wonder how many kids out there are slipping through the cracks.  For them there is no support.  Very sad.

Parents must Advocate for Adequate Health Care

If it wasn't for some fantastic specialists I would have completely lost faith in our ever improving Heath Care System.  I no longer feel taking my daughter to her pediatrician is helpful.  Even her yearly checkup is a bit useless.  They check her vitals, ears, throat, heart but that is about it.  They do ask if I have concerns and when I bring them up they get brushed off as no big deal.  My daughter's pediatrician never suggested she had Hypotonia it was one of her TEACHERS.....

I have to say I thought my daughter's 5 year checkup would be different.  After all she has now been properly diagnosed with Hypotonia. We have had countless tests, and seen several specialists.  Well, I was wrong.  Her pediatrician didn't take the time to look at her chart before her visit and when talking about the fact she had Hypotonia she just said "at least it is not a Muscular Dystrophy".  That is the best you can come up with!  I didn't come there for a pity party but thought I might actually get some MEDICAL advice as to the best way to help my daughter!

I like her pediatrician but I don't like the level of care she is receiving.  So I have been looking for a new pediatrician.  Unfortunately it seems I am not alone.  Every time I meet someone new with kids I ask "so who is your pediatrician?"  "Do you like them?".  I have yet to get a resounding "YES".  Typically I get a yes with hesitation.  When I explain why I am looking for a new pediatrician they usually confer with similar experiences.

I no longer totally blame the pediatricians.  Have you looked at your explanation of benefits from your insurance?  They get paid nothing for these visits.  They have no choice but to limit the time spent with your child.  In 5 years my daughter has had 5 pediatricians.  Out of the 5 I have been happy with 1.  I was so happy with the 1 I was willing to drive 45 mins to her office.  But things changed and she stopped seeing as many patients.

So what is the solution?  Settle for inadequate care?  I don't know.  Maybe?  I do know that we as parents have to be extreme advocates for our children.  No longer can we put our faith and trust in the medical profession.  The reality is no one knows your child better than you.  Even the best pediatrician in the world will never see every aspect of your child.  You can only hope to find one that will listen when you tell them.

I will continue to look for a new pediatrician because mine doesn't listen.  I will also continue to do research on the Internet, talk to other parents and most importantly trust my gut.  I, like other parent's know my child and I know when something is wrong.  I just don't always know what it is so I will keep searching the Internet!

Improving Nutrition One Treat at a Time?

I know lots of kids that are picky eaters.  I am always amazed at how they still look so healthy and are able to function.  My daughter overall is not a picky eater but if she eats to many sweets and/or not enough protein it is obvious.  She has no energy and acts like a demon has taken over her body.  Let's just say I am very careful with her diet because of this.  On occasion I like to pretend she does not have this issue and let her eat whatever she wants (mainly sweets and junk food).  Every single time I regret it.

Eating protein is not an issue, grains are ok but Veggies, not a chance.  Leafy Greens might as well be worms crawling on her plate.  Actually I think she would rather eat the worms than spinach and the likes.   Nutrients in Leafy Greens are important to every one's health but they especially benefit kids with Hypotonia.  They are loaded with Vitamins that help with energy production.  They don't really create energy but help with more efficient energy production and utilization.  I have to say I notice a visible difference in my daughter when she is eating leafy greens vs. not.

So how do we get them to eat leafy greens!  There are lots of cookbooks with recipes for hiding veggies.  I use some of these but am not 100% convinced that a vegetable that has been cooked twice still holds a lot of the nutrients you are trying to get into you kids.  Don't get me wrong some is better than none but I wanted to find a way to get more....

So I decided to trick my daughter with a treat.  I put Spinach or Kale into a Smoothie.  The secret - Blueberries.  The skin from the blueberries has a similar texture to the greens and she doesn't notice them.  The color from the blueberries also masks the green color in the smoothie.  I get a lot of greens into her this way, plus they are raw and provide the most nutrition!

Recipe:
Berries - fresh or frozen but must include blueberries
Bananas - also can be fresh or frozen (I often freeze brown bananas, they are super sweet and always on hand)
Greek Yogurt - I prefer plain but flavored is always a bonus
Kale or Spinach - Just wash and shove in the blender
Ice - optional, if fruit is frozen not necessary
Honey - optional, if fruit or yogurt is sweet not necessary

Place ingredients into a blender (I actually use my Cuisinart because I keep breaking my blenders with the frozen bananas). Blend until smooth.  For best results pour into a covered cup so they can't see what is in there.....

I also take this one step further and make fruit pops.  I love my Zocu for this.  It makes pops in less than 10 mins.  So when my daughter is sick and doesn't want to eat I can easily blend up some fruit and veggies and serve it a fruit pop!!  Yay.

The Care and Feeding of a Child with Hypotonia

No matter how hard I have tried I can't make this "Hypotonia" go away.  Up until a year ago I was told nothing was wrong and now no one can tell me how to "Fix" my daughter.  She has been to two allergists and an ENT thinking maybe it is an allergy or her adenoid.  No.  I have actually even thought perhaps WE ARE CODDLING HER and tried to push her, that didn't work either.

After a year of specialists and tests I have finally accepted this condition is not going away.  Yet still, no one can tell me definitively how to help my daughter.  I kept waiting for the pamphlet titled "Hypotonia a Parent's Guide".  I never got one.  (If it is out there please let me know where I can pick it up!)  It would tell me what pain she might be experiencing, how often to exercise, special food to help her feel good, she will tire easily, have emotional outbursts and seizures, etc..

Since there is no "PAMPHLET" I like every other parent "WING IT".  I take her to PT, Ballet and Swimming.  I try to find activities at home to help build her strength (maybe feeling guilty about not doing more at home is a bit more accurate).  I try and provide emotional support when she is upset about not keeping up with kids at school but still I am left feeling a bit helpless.    So when feeling helpless it seems I always look to food.  

We live in a very diet driven society.  There is a lot of advice about eating and I for one am a believer.  I think we are what we eat and your diet has a dramatic impact on how you feel physically and emotionally.  So I searched for diet help with Hypotonia.  Not surprisingly I didn't find a whole lot.  I did find the following article.  Please keep in mind I am NOT talking about Hypotonia that has a metabolic cause.

http://www.kellydorfman.com/images/Low_Muscle_Tone-website_1_.pdf

I thought this article offered good advice about Nutrients to help supply energy and build muscle.  I am not a huge fan of suppliments so I am looking for ways to get these nutrients into my daughter without them.  Not an easy task.  Let's face it kids are picky eaters, add weak jaw muscles and potintial sensory issues into the mix it seems almost impossible.  So suppliments may be the best option but for now I am going to try food.  If nothing else it makes me feel like I am at least trying to help her.

So What my 5 Year Old is in a Stroller!

I was the perfect parent before I had kids.  I judged all of my friends for their weak parenting skills.  I was an expert on Sleeping, Feeding and Discipline!  It all seemed so obviously easy until I had a child of my own.  The idea that this little person would have a mind of her own and completely ware me out to the point of complete and utter compliance seemed impossible.  Well, to all those parents that I have judged in the past let's just say Pay Back is a Bitch....and I have been paying!

I pay with the constant judgemental looks from others when they see my daughter's belly hang over her pants, riding in a stroller, and my favorite a 5 year old screaming at the top of her lungs (like a 2 year old) because I have pushed her past the point of no return.  I can just imagine what they are thinking because I, at some point would have thought the same thing.

I wish we could post a sign that says "STOP JUDGING ME MY DAUGHTER HAS HYPOTONIA!".  That wouldn't really help because no one even knows what it is and most people that even understand what it is don't understand the full impact on each child who has it.  Is it wrong to wish that outwardly my daughter looks like she had a disability?  Yes!  My goal for my daughter is to live a happy productive life and let's face it that's hard no matter how "normal" (I don't think there really is such a thing as "normal") your child may be.  Life is hard and everyone has a crutch to bare whether it is visible by others or hidden.

So I will take my punishment and hope my daughter doesn't bear the brunt of my judgemental thoughts.  I no longer judge any parent (I have moved onto single people that get to sleep through the night : ) ) because I now no that ever child comes with their own set of challenges and we are all doing the best we can.  I also know that how I handle raising a daughter with Hypotonia will impact how she handles herself.  So I will have a positive attitude and push her in the stroller with a big smile on my face!

My Daughter's Hypotonia is not My Fault.

Even before my daughter was diagnosed with Hypotonia I had been blamed for her inability to walk.  "You carry her to much, she is always in a stroller she needs to walk on her own, and my favorite she needs to play outside for at least 60 mins a day."  These comments were made by people who care and even doctors.  They were meant to be helpful but they were not. They left me feeling even more frustrated and bad about my parenting skills.  

I now know her disabilities are NOT MY FAULT (well, genetically they really are) I still look for affirmation of this all of the time.   I constantly ask Doctors, Her PT and anyone who is familiar with Hypotonia to remind me it is not my fault.

 I often struggle with the question am I doing enough to help her?  I don't know the answer to that.  

I often talk to her PT about things we can be doing at home to build her strength.  Do I do them?  NO!  My daughter fights me on everything and by the time I add the exercises to the list I am worn out.  Occasionally when I am feeling like a Super Mom I come up with creative ways to do the exercises but that is few and far between, maybe like twice in the last year.  

One thing I do know is that feeling this way isn't good for anyone.  Myself or my daughter.  She is now 5 and is starting to become aware that she can't keep up with other kids and is embarrassed about the size of her belly.  In addition to me helping her physically it is my job to help her emotionally.  She needs to be a confident kid who accepts her weaknesses and focuses on her strengths because she has many.  

This post is just a reminder to myself and others of this fact.  Everyone has a weakness and I think parents are wired to blame themselves (that is before your sweet child turns into a teenager and they start blaming us for everything, then we can finally defend ourselves!). Remember always.....

"Life is 10% what happens to you and 90% how you react to it." Charles R. Swindoll

My Daughter has Hypotonia! Now What?

Hearing the words "your daughter has hypotonia" came as a relief.  Since she was born I knew something was wrong but didn't know what.  I had brought up issues to countless doctors to only be labeled as a Nervous Mother.  This label was so strong even when I brought up breathing issues that were so severe we called 911 I was brushed off.  So getting a concrete diagnosis of Hypotonia was life changing for me.

For those unfamiliar with Hypotonia the following is the definition on Wikipedia.
"Hypotonia is a state of low muscle tone^[1] (the amount of tension or resistance to stretch in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength. Recognizing hypotonia, even in early infancy, is usually relatively straightforward, but diagnosing the underlying cause can be difficult and often unsuccessful. The long-term effects of hypotonia on a child's development and later life depend primarily on the severity of the muscle weakness and the nature of the cause. Some disorders have a specific treatment but the principal treatment for most hypotonia of idiopathic or neurologic cause is physical therapy, occupational therapy for remediation, and/or music therapy."

As mentioned in the definition Hypotonia is not a disease rather the symptom of an underlying medical condition.  So you can imagine that my relief was quickly followed by horrification as to what was causing the Hypotonia.  We are among the fortunate to find a great Neurologist that actually conducted tests (I have heard a lot of people have had to push to get tests).  He found something in her DNA and we were sent to a geneticist.  It seems she is missing a strand on her X chromosome and this was inherited from me.  Apparently the condition is very rare and there are only a few reported cases (the main reason is the ability to see this deletion is new).  Despite the fact I don't have Hypotonia they say this condition is responsible for my daughter's Hypotonia.  Her Neurologist is not 100% convinced nor am I.  But after a year of doctor visits and tests we are giving it a rest.  We are visiting the cardiologist (double checking to make sure it is not affecting her heart, I love her Neurologist) on Friday and then we are done.  

My daughter was 4 when she was diagnosed (she is now 5).  She has developmental delay, low tone in her trunk, legs and shoulders.  She also suffers from mild seizures.  We are very fortunate that she can walk, run and climb stairs they all just take more effort.  Sitting in a chair is also an effort.  She cannot keep up with most kids half her age and can walk maybe 5 mins before getting completely winded.  These things are all par for the course I am finding out and like I said we are fortunate that she is able to do that much.  Her prognosis could have been much worse.  

I created this blog as a way for me learn more about Hypotonia and ways to help my daughter live a happy life from research and hopefully other parents going through the same thing.