JOURNAL

Do you have a 'very Special Child'?
Then you might be interested in my
TAILS!!


I created TAILS on Suzy's SHIRTS.
It works for us ~ maybe it will work for you, too.

Remember when your kids were babies?
And they all wore ONESIES?
I loved onesies for all 3 of my babies -
the shirts stayed tucked into the pants,
their tummies stayed covered, and warm, and protected,
the onesie kept the shirt from "bunching all up in the back" when the baby was in a stroller or carseat,
there wasnt' a bunch of material gathered around their boobies when they were rolling on the floor,
they just looked neater.

Suzy is pretty much still like a baby - AT AGE 5 - and STiLL NEEDS ONESIES.
So, I created a way to make EVERY SHIRT SHE WEARS A ONESIE by sewing on a TAIL!!

I have done this for 2 years, to every shirt she has, and it's very easy!!!

For every shirt, you need one baby onesie. Cut the bottom 1/3 off the onesie, cut off the sides, and sew it onto the bottom of the shirt.

Click here for DETAILS and PICTURES.


http://www.babyjellybeans.com/web/do/site/photo?ID=723096





   

   
   

All Better! March 15, 2010

 Suzy is doing great!

We made it through our first battle of pneumonia. She recovered nicely. We are fortunate. Many children end up with a stay at the hospital. We caught it quick.

We were planning to go to NY tomorrow, but we had to cancel our trip. She was going to participate in ABM therapy with Marcy (one of the 'leading ladies' in the world of ABM.) It ended up not being a good idea to travel (to a cold and wet city) after being so sick. It also costs so much more than doing it in VA or NC. So we postponed our NY trip a couple of months.

Our next 'travel event' will be in 1 week, (on March 23rd) to Black Mountain, NC, to see John Robson. We will do ABM therapy for 4 days. He is the same fellow we saw last month. We are excited to be going. He worked so well with Suzy.

Last week, while in DC, we worked with Carla doing ABM therapy. Carla pointed out some of her insight on Suzy.  She feels that Suzy has many 'positives' going on in her body -

1. She feels Suzy moves alot, and with a lot of 'intentions'. She is trying to move, and trying to execute the move (something that's not so obvious to the naked eye); but her movements are 'wrapped in a trap of spasticity'.  In other words, some children, many who are born with CP, don't even know that they CAN make movements, and they lay still and very floppy. Suzy KNEW how to make the movements, and COULD make them for 11 months of her life - a good thing. Unfortunatly, now her brain damage is causing her brain to send incorrect signals. It is firing off contraction signals, but Suzy might want to extend that muscle. But the brain KEEPS firing this contraction signal and so her arm (or leg, or ankle, or hand, etc) stays TIGHT and contracted. The muscle 'tone' is described as being SPASTIC. This can be painful. And it is surely frustrating for poor Su.

However, Carla said we are going to teach Suzy how to over-ride the spasticity. (wouldn't that be a treat???)

2. She feels Suzy is very much 'in there.' Suzy listens closely and pays attention to what's going on around her. Carla wants us to talk to her like a 3 year old, and not the baby we think of her as. And for us to constantly remind ourselves that Suzy probably understands much more than we give her credit for.

3. Suzy is an oral eater. This is a positive, because eating is a primal instinct. Therefore, the brain is really paying attention to eating. So, eating time is now going to be a big learning time for Suzy. Carla is teaching me many little things I can do with Suzy while feeding her that will stimulate her, and cause 'learning'. I will give her lots of choices and decisions to make while eating. Each time a person 'learns' something, they are creating new connections in the brain. We are going to build on those connections.

I said to Carla, "I have a dream that we can teach her to drink from her own bottle."

Carla said, "A bottle? She's 3! I'm going to have her drinking from a CUP."

OMG!!!   (the pessimist in me said, "I'll believe it when I see it. This child can hardly bend her elbows from all the tightness".)

Suzy's muscle tone is actually "mixed" tone - she has some spastic muscles ("too tight") and some floppy muscles ("too loose"). However, none of it's really a muscle problem. Her muscles are just fine. It's a brain problem - the communication from the brain to the muscle is all crapped up.

The other 'problem' Suzy has to overcome is her unfortunate REFLEXES. She has unwanted reflexes that get in the way of her purposeful movements. We are all born with these reflexes; but we integrate them by about 9 months (depending on the reflex). The brain damage brought these back out. The most troublesome is her ATNR - (Asymmetrical Tonic Neck Reflex). When she turns her neck to the right, her right arm extends outward, and her left arm bends inward! And when she turns to the left, the opposite happens. I was really hoping this would be gone by now - but we are far from it!! It's still very much around and getting in her way.

Other disadvantages - she sticks out her chest and leans backwards instead of staying upright. She collapses at the knees when she's trying to stand. She rests her head on the back of her neck.  Her balance is crappy. When she wants to reach her arm front-ward, her arm pulls backward. Also, the right side of her is more involved than her left side. Therefore, her whole right side contracts a little more. This causes her to lean to the right. When she's laying on the ground she looks like a backwards letter C. And when she's standing, she leans over to the right. Scoliosis - here we come!

Carla confirmed that we have A LOT of work to do (duh!), and it's not a miracle, and it would take years of hard work to meet all of the goals I have for Suzy..... 

But we're up to the challenge....

She's the cutest love-bug in the world - she's worth it.

This week is going to be nice and normal. She will do PT with Karen at the gym 4 days. She has ST (speech) on Wednesday. And her 'home-school' special education teacher,  Miss Nina, will be here on Wed. and Friday to teach her a few things. We no longer have an OT - I need to get working on that.

Jenny will be here for 25 hours this week (back to normal!!!). Jenny was out of town last week on vacation and we missed her like CRAZY!! I'm not sure who missed her more - ME or Suzy.

I know, I know, I know.... Too Much Information. Sorry. I got carried away with explaining details tonight. Thank you for listening to me ramble.

Hope you and your family are doing well, and staying healthy.

Peace,

Whitney

pneumonia March 10, 2010

Sweetie is feeling worse today.

We went back to the pediatrician today, and got a diagnosis of pneumonia. (She's never had that before). We got an antibiotic and nebulizer for breathing treatments.

Hopefully she'll be feeling better tomorrow.

Peace,

Whitney

We're back!!....but the princess is sick. March 09, 2010

We're back.............but the princess is sick

Suzy and I just returned from another out of town adventure. We went up to the D.C. area for 4 days to participate in another session of ABM Therapy. We met with a wonderful practitioner (Carla Reed), who has been practicing on handicapped children for 40 years! She was a wealth of information, and she connected with Suzy right from the start. We had 2 GREAT days with her (2 lessons each day). By the third day (Sunday) Suzy was just not herself. She was lethargic and whiney. By that night she was burning up with fever. Monday morning we got one lesson in before deciding that it was a waste of time trying to learn movement while sick. We left early and came home.  This morning she was snotty, feverish, and still very tired. She just has a bad cold. Nothing serious, but miserable just the same.

This trip I took Maggie with us. She wanted to go, so we decided to give it a try. I was SO glad we had her. Maggie was a HUGE help. She entertained Suzy during the whole 4 hour car trip. She fed Suzy snacks, read books to her, held toys up for her, and gave her sips from her bottle. She played with Suzy while in the pool, watched videos with her, and also kept ME company! It was so nice having her along. Plus, it was one less child left at home that I had to miss.

I was dissapointed that we didn't get to have all 8 lessons with a healthy and happy girl, but we are already planning our next trip back up. I can't wait to get Suzy into the hands of Carla, and work on more ABM therapy.

We are planning on doing another ABM session (8 lessons) in March, and do 2 more sessions in April. By May 1st I will have a good idea if ABM is the best therapy method for Suzy, and if we should continue to pursue it; or else look for something else.  The quest continues.................

Suzy is now able to hold objects (toys, lollipops, teething rings, etc.) in her hands and bring them up to her mouth for chewing and sucking!!!!! This is so huge!! I have prayed for this for 2 years. She was never able to hold anything for more than a second, and she was not able to bend her elbow, and her ATNR reflex always caused anything in her hand to extend AWAY from her head, instead of TOWARDS her head. She was always "sh*t out of luck".... until NOW!! Now she can do it.        Hip-Hip-Hooray - Let's have a party today!!

I am so proud of her. This started happening last month, after we completed our first round of ABM therapy. This shows that she can overcome the strong ATNR reflex that the brain damage caused.

Now, I want her to be able to reach out, and pick up the object. (Currently, the object has to be PLACED into her hand).   I know - I know - I am never satisfied.

FYI - Here is the description of ABM (Anat Baniel Method):

 What is the Anat Baniel Method?
The Anat Baniel Method expands on the work of Dr. Moshe Feldenkrais. It is a non-medical, learning based approach that uses gentle touch and movement to enable the child with special needs to improve physically, mentally and emotionally. It asks children to move only in ways which are within their true capabilities, creating a feeling of safety, encouraging a willingness to expand into new abilities. Practitioners certified in this method provide learning experiences that help children develop beyond their limitations. Infants' and children's progress often surpass medical expectations. 
 
Who can benefit from the Anat Baniel Method? 
Children and adults who have been helped by this method have had some the following conditions:
 
· Autism Spectrum Disorder
· Brachial Plexus Injuries
· Brain Injury/Brain Damage
· Cerebellar Atrophy
· Cerebral Palsy
· Delayed Development
· Down's Syndrome
· Failure to Thrive
· Fragile X Syndrome
· Hydrocephaly
· Macrocephaly
· Microcephaly
· Multiple Sclerosis
· Muscular Atrophy
· Premature Birth
· Sensory Integration Dysfunction
· Stroke

Thanks for continuing to check in on us, and supporting us throughout this journey.

Peace,

Whitney

February 26, 2010

Warning - another VERY CUTE 45 second video added!

Suzy was swinging in her Wingbo Swing with Jenny.

Jenny would stop the swing and asking her, "Do you want to GO?"

Each time, Suzy would answer "YES" in her own adorable, special way.

This is a great video because it shows:

1. She understood the question.

2. She figured out a way to answer it.

3. It shows great head control, and back extension.

4. And it shows her having a GREAT TIME!! She was totally into the activity, and obviously loving every minute of it. Her awareness of the world grows every month.

You can clearly see why we love this little girl so much!!!

click on -VIDEO "Swinging Away"

 

February 20, 2010

I added a new video - "Stander Dancing".

Suzy was in her stander, and Maggie came by and took her dancing.

You can tell why Suzy loves her sisters so much.