Little Miss Sunshine Shines!

Have not been a good blogger lately! Promising to myself to improve. Some interesting happenings are worth updating but just wanted to mention today. Just simple day, one of the first vacation days without obligations, things we must do, places we've got to go. So we went to the local swimming pool. Ollie was grounded for ripping off the curtains with the hangers and breaking my favorite huge, rustic, glass candle holder at the same time. Not to mention shatters of glass inside the piano. Well, the post isn't about the mischief. It is about bright sunshine. It was just Amelia and me and the joy of just two of us in the water. First we met teacher's aide from Amelia's school and she happened to be a life guard ad the swimming instructor as well. She took Amelia to meet and greet the swim team, it was a great experience for her. We also got a contact for a person in charge of special olympics team there, Amelia wants to join! Probably not quite yet, as she is probably too young but never to early to inquire about it. Then we meet Allie. 12 year old girl won Amelia's heart showing her different acrobatics under water and teaching her how to swim. We all had awesome time jumping in the water, paddling along and laughing. Amelia was talking about Allie for the rest of the day. We are so happy meeting wonderful, inspiring people. Later, taking to Allie's mom we found out that she had no hearing in one ear. I noticed a very interesting notion that Amelia attracts people with special needs of all ages and abilities. They are special and have very special connection with Amelia. They exchange inspiration and joy and laugh. Truly amazing thing to watch. I have high hopes that Amelia will continue to shine and inspire others, especially those with some challenges in life, that she will facilitate mutual understanding, openness, joy of life. Very special time. Hope all Summer will be like that (except for the house wreckage :-)

November 13 - Amazing First Steps!

I can't believe THIS is finally and really happening. My big little girl is taking her first independent steps on her own, more daring every day! This is unbelievably exciting for our family. All of us witnessed the happy moment and Ollie was shouting "Mommy daddy did you see? Amelia CAN walk! " It's a long way she's come to reach this point. Not that I doubted that she will eventually walk but it was a very slow process and sometimes painful for Amelia. This Summer she was more aware of many things and so frustrated that she could not run after her brother and friends. By the next Summer she will certainly well prepared. It will not even be about catching them but being able to get up from the ground and do whatever they do. She is so happy now. So determined to practice, eager to walk. It's a pure joy to watch her, to join her happiness.  What a lesson in patience. Now it is time to celebrate. Joyful season too! I am still trying to catch Amelia's own steps on camera!

October is Amelia's month!

In October we tell the world that dwarfism is not an illness, not a disease that can or should be cured or fixed. Dwarfism is another form of being different than the rest of the tall world. People with dwarfism sometimes have medical problems - but they are not defined by them. What defines a person is not a hight, size, color or life challenges. The approach to life does, the character, the spirit, the heart does define a person and makes one a human being. Being different brings new light, new colors to life. Being different sends a message that not everything is easily defined, managed, controlled. That being true human is to stand out, not to fit in. I love my little star, little sunshine.

Getting easier, getting through it all...

I did not mean for my last post to be sad because as much as we hated seeing our precious baby go through all that, we've learned so much from her. Patience, perseverance, living in the present. No "why me-s" no "but-s" no dwelling on what happened. Just doing what life expects  - cherishing it, no matter what.
Big brother Ollie was such a great help with that. He even wanted to wear the same collar. After the big brace went bye-bye Amelia got soft collar to wear and she got two of them. 

That made such a difference! She was able to move faster, stand longer, pull up more often. She started to be really determined about walking, even running. The collar quickly turned into very part time use, Amelia was getting totally free and even more happy everyday

There were times that I thought that the "brace era" is never going to end, but time flies and things, even the hardest ones, get easier over time and that's a good thing. Now Amelia wears the soft collar only in the car and her neck muscles (immobilized for so long) get stronger everyday. 

Osteomyelitis meaning bone infection. Example of a really bad luck.

I have not blogged in such a long time! That’s my longest break since the beginning of this blog! I have some catch up to do. I guesss Facebook makes one lazy, I value my connections there but it does not leave me much time for a deeper insights in writing.

So we are back on track.

Shortly after my last post our sweet word slightly turned upside down. What seemed to be a routine tonsils and adenoids removal surgery became a six months recovery but let’s start from the beginning.

After Amelia’s sleep study in December her ENT doctor decided that due to severe obstructive apneas we need to remove adenoids and tonsils. And it was good idea as it turned out she had very large adenoids which caused severe breathing difficulties. Last few weeks before the surgery in January she could hardly sleep at night, only when I was carrying her in my arms in upside position. We both were extremely exhausted and I was looking forward to that surgery which supposed to bring a relief. 

Surgery went great, no problems but Amelia had to stay in the hospital for few days because her oxygen level was low. Luckily it picked up and stabilized on a satisfactory level. My concern from the day 1 after surgery was Amelia's pain. To the doctors it looked like normal pain after that type of surgery (throat area) and I heard from many  LP parents on FB that recovery after T&A surgery is a mess. She was on strong pain medications and still it did not seem to help. I remembered Amelia after her decompression surgery when she was only 5 months old. She did so much better then! I could not understand that.

Days and weeks passed but the pain was not going away, only getting worse but after checking several times doctor said that everything is healing all right and reassured us that the pain is normal. We were having problems with Amelia's simple activities - putting on clothes, sitting her up, etc.

She had no fever so nothing was really alarming.  I knew that something was not right but doctors kept waiting for improvement.

Finally a month after surgery during check up ENT doctor finally concluded that this type of pain (she was screaming after any head movement) is a sign of something more serious and send us to Emergency. Amelia had MRI, X-ray, CT scan and bloodwork done the same day and it was finally discovered that she developed  osteomyelitis - a severe infection that spread to the spinal bone (affecting her already very sensitive area of C1 vertebrae, where she is at risk of foramen magnum compression). This type of infection happens very rarely (one in a million?) and of course Amelia had to be the chosen one like she already did not have enough on her plate. Hard to justify, hard to understand. Doctors said it was a terribly bad luck. Ugh. At least there is hope that she exhausted her pol of lifetime bad luck. 

After several days of hospitalization it turned out that few respiratory bacterias (including pneumococcus) found their way deeper through the incision, infected the soft tissue and the spine so Amelia ended up on very strong antibiotics IV and in the "minerva collar" (which covered more than half of her little body) to stabilize the spine, facilitate healing and prevent injuries. She was living in that 24/7 for 3 months. 

For a few days we were living in terror not being sure if the antibiotic will help and if the infection won't touch the spinal cord or get to the blood system. Luckily none of that happened! ENT doctor flushed the infected area (same night after they admitted us to the hospital) and the waiting game had begun. We were kept in the hospital for a week until they finally narrowed down the bacteria which caused this turmoil and established the antibiotic protocol which we continued for a month through IV port (Broviac catheter) three times a day. Improvement was tremendous! Amelia  fairly quickly adjusted to the brace, going about her chores without even paying attention to this constraint. 

Amelia was such a trooper! Adjusting, adapting and not loosing her amazing smile and spirit. Big lesson learned. We did, she did not have to, she came down from the skies to teach us :-)

Amelia turned 2!

On January 21 Amelia turned 2! I can't believe she is such a big girl already! It seems like yesterday she came home with me from the hospital, little bundle o joy.
Wishing my beautiful girl most of all great health, millions moments of joy, friends around and lots of laughs just like in this moment when her best friends were singing "Happy Birthday! and hugging:

great presents:

Bowl of popcorn:

And even more cakes! 

Yoga For the Special Child

It's been month and a half since I returned from the training "Yoga for the Special Child" and it feels like yesterday. It made such an impact on me that I cannot imagine doing anything else in life professionally. I received a certificate and recently also practitioner's license. 

I wanted to thank Amelia here for bringing so much meaning and sense into my life. Before you came into my life I did not have a vision, sense of purpose. I worked, I even lost my job as it turned out - to stay home with you and to rethink my professional future. I wanted to work with kids, I wanted to help, heal, give myself to the little ones in need. Did not quite know how. My wonderful yoga teacher told me abut this training so I went to Kripalu Yoga Center and it changed me, made an imprint on my soul. Now, I am new person. I know that having child with special needs happened so I can help others. If there is a yearning in your soul it will find the way out. I guarantee it. 
Yoga For the Special Child is a very unique program for kids of all ages and all abilities. It is not yoga games, animal poses, just fun. It is in fact very therapeutical and it improves quality of life big time. It helps physically (better than PT) but not only - it teaches breathing, deep relaxation, gives kids very much needed sense of achievement. It is very gentle and safe. Author and teacher of this program, Sonia Sumar, developed it over 30 years ago working with her daughter with Down's Syndrome. My wish is to make a difference, to bring light, love and healing to the live of few. I pray for the chance to be given and fulfilled. I practice this Yoga method with Amelia and it is not always easy as she has her own mind and does not always cooperate but I try not to form expectations on how much we need to accomplish in class. I go with the flow, connect with her and follow her moves. She actually has few favorite poses like cobra. It really helps her kyphosis. I chant for her, we exercise breathing techniques, we do easy poses and preparations for more difficult ones we do some simple relaxation (as for the deep one Amelia is too busy :-) As Sonia Sumar said we all have special needs, limitations. We hide them as we were told that the weakest never survive...We are slaves to the typical achievement system. Special kids are free from that and have their own agenda (or better - no agenda at all!), own achievements. They set the pace, nobody else. Kids differently able are more open to love as they have less resistance to love, they are best teaches of unconditional love. I still have so much to learn from Amelia...
Amelia came to Kripalu to help Sonia to demonstrate how she practices her method, initially very shy and unwilling to cooperate:

She eventually warmed up and started trusting a bit more:

Fairly soon Sonia was able to do a lot with  Amelia! I was very impressed!

Amelia started practicing yoga few months before that session, so she already knew down facing dog pose :

 Finally proud mommy's kiss: