Feeling So Sad...

I feel for you. My oldest son was just diagnosed with Juvenille Arthritis. The last six months have been physical therapy and other random doc appointments. I range from hopeful to fear that this will overwhelm him and he may end up permanently disabled. As someoe else said acceptance is key. As long as I accept that he has challenges and may never be able to "keep up" with his younger siblings. He is a really awesome kid and is well liked by people of all ages. He has a wonderful heart and is an acedemic success. He is also learning to play the piano, awesome! She will do things you never planned but it doesn't mean she won't be amazing. :)

This was posted on a blog I follow from a woman who waited 9 painful years for a complete bowl and digestive system transplant for her daughter. During that time her daughter was in constant pain and could not eat any food at all-she was fed intravaneously. It may not pertain so much to you but I think it is a really nice story to make you see the brighter side of life.

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A friend's daughter had (has?) low muscle tone. She is 8 now and if her mom hadn't talked about it when she was younger I never would have known. Because I know about this I do notice that she is slightly less active than other kids and her younger sister did reach some milestones before she did (pedaling a bike, swimming) but she got there on her own good time eventually. She did have PT and OT through Kindergarten and some OT continues now for things like handwriting but other than that, she does dance and gymnastics and other things just like other little girls. So it may take a while but the good thing is that you do have experience and she will catch up.

By all means, take a day or two to feel the disappointment. It's OK to be be disappointed, both for yourself and for her - we all want our kids to be healthy and have things be routine and easy for them (and us) and it's OK to feel lousy when you know that it's not going to be that way.

Then, you just have to focus on the positives and move on. We all know or know of families who are dealing with children with critical health problems who would give anything in the world to have "only" what our children have. Who would like for their child to come home from the hospital just of a little while, or breathe without a vent, or not be paralyzed, not be rejecting a bone marrow transplant, or eat without a feeding tube, or not be tied to an IV, or will live to see the age of 5. So after you grieve for a bit, realize that you are lucky to not be dealing with something much worse, and be positive.

Sorry you're going through this, and I hope your optimism returns soon!

If I remember your post correctly, it did not seem that she was too far
behind. With some work and a lot of fun I think she will do fine. Used
to work with babies with low muscle tone and 95% of them improved so
much that by the time they were 2 you never knew they had any problems.
Ev, erything that she achieves will bring you such joy. Do not think of the
therapies as work. Think of it as special time together. In a few days,
you will move on and do what you need to. For right now it is OK to feel
sad. I was told my youngest would not read, speak, attend a reg. school etc. Well she is a surgical tech in the OR, EMT and volunteer firefighter.
I remember feeling so sad initially, but in about a week, I picked myself
up and got to work with her. So I am sending you a big hug! Keep us posted.

To be quite honest my post is a little short as I was going to write, nearly verbatim, what Betsy wrote. Hugs to you - I understand your feelings.

My best friend's daughter had low muscle tone. At 12 months she would crawl, but would not pull up, bear any weight on her legs, or walk. They put her in physical therapy and she had braces for her ankles. Within 6 months she was walking and running. She just turned 2 in April and you'd never know she was delayed in her movement. I have no idea what is typical, but thought I'd share a success story!!

Hi Katiem, my kids didn't have low muscle tone, but neither are they perfect in everyway either. There is always something to be worked on with every child. For example, my middle child was a 26 week, 1lb 11oz preemie. Man, talk about WORK!

Still it IS possible to find joy in their every little move anyway, whatever their imperfections.

I think you will rise to the occassion (after a little sulking) and get busy helping THIS one as well as the last! And actually her milestones will be MORE joyous and meaningful when she DOES hit them, after all the extra work you've put into it.

Each child is a blessing. I know you'll find the joy in this one as well!

Enjoy them!

:)

No experience with low muscle tone, but have gone through accepting that my youngest was delayed and eventually that he was diagnosed with PDD-NOS ( on the Autism Spectrum) Basically I want to extend hugs and hope and tell you that it is ok to allow yourself to "grieve" for a bit...we all have ideas about what our children are going to be like and we all want to enjoy them. You can do this, you have been down this path before and hopefully this time it will be a bit easier because you know where to start = )
Something that always uplifts me when I feel down about my own sons progress or when he takes a step back at times is reading "Welcome to Holland" it is great at reminding us, that yes it is different and not what we were expecting, but Holland can be just as beautiful.

Hi Katiem,

The older I get, the more I realize how perfectly imperfect we all are.

I just have not met very many people in my life who live without health problems, or medical issues, or something, somewhere in the family genes that surface at sometime in their lives.

I agree with the other poster, it's important to allow yourself to mourn the current health of your children. I don't want to minimize their condition, but what is interesting is the exact cause of hypotonia is seldom understood, but with continuing to expose your kids to individual sports, they usually overcome this specific weakness. You might have to give up dreams of olympic stars or professional athletics due to a lack of coordination, but with PT kids outgrow this phase rather well.

Some docs do not recommend PT, but rather expose your kids to swimming or lots of time at the park, running, kicking balls, etc. But most families report PT is a a huge success. You have to decide what is best for your family.

Here's a very helpful site I like b/c you can ask questions to other parents?

http://www.babycenter.com/404_what-is-low-muscle-tone-and...

Best of luck!!

Hypotonia is caused by LOW POTASSIUM reserves. The root cause of this is typically HIGH ALDOSTERONE comming from the adrenal gland. (High aldosterone is also known as Conn's syndrome and you can look this up online).

If the doctors have not tested the child's (or sibling's)hormone levels- shame on them.

I am a medical student and do in depth study on endocrine issues.

They should do a blood aldosterone test and a renin test at the same time. Electrolytes should be tested also- potassium should be in the very upper ranges of the perameters....a 'low-normal' reading means it is low.
Low potassium can have long term effects on the heart.

In the mean time, it would be wise to feed lots of potatoes and bananas, and limit sodium.

First of all, I want you to remember that we are all blessed with children the good Lord felt we were perfect for. You must be an extraordinary woman to have been blessed with these children. You must have the strength and tenacity to be the right person to teach them, support them, and coach them through this difficult road. Now all you have to do is focus on having fun teaching them. Just because you can't sit and solely play with them, take your time of working with them AS your fun time. Maybe this will help you enjoy them more.

Just so you know, I am not coming from a rose-colored glasses world, I have a son with some very serious learning issues and another two children with emotional struggles as well as a 5 month old and find it hard to keep my chin up sometimes. My children and I are the world to each other and I just try my best to make our time together positive and enjoyable.

Good luck!

Sometimes I think perhaps 90 percent of parents end up dealing with something that pulls the plug on their dream of simply enjoying their kids. We live in a difficult world. For me, the dream ended when their dad left. My kids were 4, 2 and 8 months. Instead of enjoying them, I began scrambling to help them survive the upset, and to learn to raise them as a single parent. In retrospect, yes, it was very sad. But there are few things as satisfying as knowing you did the best you could for your children. And you will enjoy seeing them grow and blossom in their own ways. Acceptance is really key. When we accept the situation for what it is, we're free to get on with it, and then the joy shows up unexpectedly.

Well my daughter doesn't have that problem but I can empathize...
When my youngest was was 10 she was diagnosed ADHD. So adjustments had to be made both at home and school. She started doing competitive gymnastics and continued to be a happy, outgoing kid (no meds.) Just when I think we're getting into a good place she starts having severe anxiety over getting sick, worries that everything she eats is "bad" and will give her food poisoning, obsessing over germs and being convinced that if she is around someone who's sick then she will get it too. She started washing her hands RAW and she lost 6 pounds (which is a lot for an 80 pound child!)
So she has dropped out of gymnastics, hates going pretty much anywhere, gets tummy and headaches all the time and the whole family is walking on eggshells because she is so sensitive. She is seeing a biofeedback therapist and will start to see a psychologist next week as well. She has also undergone an endoscopy to make sure there's nothing physically wrong with her GI tract (there's not.)
So yes, it can be very frustrating. You just want to be able to enjoy your child and not have to "work" on them.
But maybe this will help it in perspective:
at least it's not cancer, or any other life threatening, heartbreaking disease.
I watched a little boy I know slip away slowly over two years and his parents worked hard for him every day, taking care of him and his big brother, driving him all over the state for treatment, all to no avail.
When I get depressed and frustrated over my daughter's condition, I think of that family and how LUCKY I am :)