Learning a New Language...

I have always found foreign languages fascinating and the thought of learning a new language like say, Italian, holds a certain romanticism to me. The new language I am learning now is the farthest thing from romantic. The months after Bella's diagnosis have been filled with learning...new words, phrases, etc..things I just never wanted to learn about. In order for everyone reading to understand a day in the life of Miss Bella Kai and her family I will have to share some of this new language with you. Words like, hippotherapy, sensory integration, augmentative communication device, weighted blanket, gastrointestinal, apraxia, IEP, medicaid waiver; etc etc..

Update on sweet Miss Bella.. she is now a whopping 27+ pounds! She has gained 20% of her body weight in a few months..which is GREAT news. Although, she has become quite the chunky monkey to carry around and dance with (one of her favorite things!). We recently saw her local neurologist and because of her weight gain her anti-seizure medication was increased. We had started to see some "pre-med" behaviors return, such as terrible nights with no sleep, teeth grinding and so we were hoping that with the increase in medication we might see those subside. I had also been noticing what I believed were the beginnings of "drop seizures" where Bella would have a momentary loss of muscle tone in her neck and her head would fall forward very rapidly. It would only last seconds but it concerned me. Now with the increase in medication which we have given to her a litle over a week and a half, I have not seen any head drops. And we are starting to get some relief in her sleep pattern..we are on night 2 of her falling right to sleep and most importantly, staying asleep. Rett girls have such a hard time calming their bodies so they can rest and fall asleep and if they awake, get back to sleep. I have read a lot about "weighted blankets" which are supposed to be wonderful in helping her sleep. So I have ordered one.. who would have thunk??

We are anxiously awaiting Bella's appointment back up in Boston on the 27th with the gastro doctor. Poor Bella has had a pretty big upswing in stomach issues. The issues cause her great discomfort and we spend long periods of the day trying to stop the screaming and head hitting. I just can't wait to get her some relief. She has days of constipation, days of diarrhea, days of acid reflux, days of gas cramps...its nearly impossible to keep her consistent and its just heartbreaking to see her go through it. I feel like once we get hold of that issue Bella will have a break, as this is really the only time she is "unhappy".

We have started a lot of new "therapies" as well. Bella has a busier schedule than the rest of the family and I have had to recently purchase a "white board" to keep it all straight!!!

Every Monday Bella goes to "hippotherapy"... now when I first heard this I was trying to figure out how a "hippo" was going to help Bella.. but thankfully I learned quickly that it was a horse that was going to help Bella, not a hippo!! This therapy is amazing... she actually will learn simulated actions in the developmental stage of say crawling, by getting up on her forearms and extended arms, all while on the horse. It will strengthen her legs, assist with balance and horses are known to aid in calming children with sensory issues and anxiety, like girls with Retts. Best of all.. Bella loves it!!! She seems to love animals and I am so happy she gets to do something that she enjoys seeing that she has some kind of therapy just about every day!

Bella continues to go to physical therapy twice a week where she most often does her session on the pool. She may be warming to the idea as now she only screams for the first 20 minutes.. we have even seen a few smiles during the remaining 25 minutes. Her therapist reports that he can absolutely see and feel that Bella's muscle's have gotten stronger.

On the other days Bella has Early Intervention therapy which basically is somewhat like "occupational therapy" where things like teaching her to "stack blocks" and "empty/fill" and other similar activities are done. I have noticed that Bella does seem to be "playing" for the first time. She loves this musical soccer ball that Zackary received for his birthday. When you roll it music either plays or it counts the number of rolls. Bella will roll that ball on her own and follow it all over the house. She will give it a good roll, scoot over to where it is and roll it again. It is wonderful!!! I can't tell you the joy it brings us to see her playing!! That is hard to really explain unless you have experienced a child who has never played. I also see her looking at her toys differently and acting more appropriately with them. She will hug and kiss a baby doll, she will spin objects on toys or bang down a peg with her hand.

Best of all.. Bella has been an ACE on a little bike she received from someone very special to her. When we first put her on it she would sit and be very unsteady with her balance. It has not taken her long to become a PRO. She gets on it and cruises around the house, self propelling herself with her legs. And her balance has become very good and she rarely falls off. As recent as today I have seen additional progress where she is starting to propel herself alternating legs rather than using both legs at the same time. I am encouraged by this because alternating legs is what she needs to learn to walk. She actually rolled right into our pantry and I was lucky enough to catch her pulling up to standing from her seat on the bike by using the racks in the pantry.

When you are with Bella every day it can seem like nothing is happening, no progress is getting made or if there is any, it is painfully slow. That is how it is for me... until I actually sit here and write all of her accomplishments and find myself smiling. I guess it is just never going to be fast enough. When you want your child to walk and talk, it just can't happen soon enough. But I am thankful I have all this progress to report.

Bella also starts speech therapy this week. I am so hopeful that we can provide Bella with a way to communicate with us. Which to me is still one of the most painful parts. We will be working with Bella to gain the ability to deliberately point and select with her fingers. If we can do this, Bella could benefit from the use of a communication device. It really is amazing what is out there to help children with special needs. The device that Bella will start with is pretty elementary but could open a whole world for us.. it will show a variety of pictures and Bella will select what she wants to communicate, such as pictures of food, or a glass or of bed etc. When she selects it, the recording will say "I am thirsty".. etc. It will give her a voice.. so she can express her needs. Simple as that. Imagine not being able to express something so simple as that but knowing in your head you would really like a drink....a living hell if you ask me. And I will be damned if my daughter stays trapped like that.

So as Sunday night comes to a close, I am excited to start another week, tomorrow Bella has PT and Horses... busy little girl, busy Mommy and Daddy. But as each new week begins there is new promise, for more progress. And with each new week there is hope. Hope that a cure will come soon and that all of this work Bella is doing now will help her transition quickly once the cure is found. So she will look up at me and say "See Mom, it all paid off, I got this.."

A Mother's Ramblings....

There were times in my life when I would imagine how great it would be to take off and back pack around Europe or jump in a car and just drive with no given destination. It wasn't too long into those daydreams when I would start laughing, knowing myself way too well, and thinking..there is NO way that would happen..I need maps and guide books, itineraries and hotel reservations.. all done way in advance. I now find that ironic. When I started this blog I thought I aptly entitled it "Bella Kai's Journey". I have come to realize that it may not be very accurate. It is more than Bella's journey. It is her entire family's journey. On June 21, 2011 we all started out together, bound by one goal...survival. Its funny, I didn't even have time to pack a bag. Its only been a little over 2 months and I feel like we have already traveled a million miles. And although we are all out there together, we are all wearing very different traveling shoes. It has become necessity that we all follow our own compass as to which ways to turn for it isn't an easy journey.. there are so many pitfalls that come completely out of the blue.

I myself have taken many turns..much of them alone, truly believing I know the right way (I was never really good with directions). You see, that is how I came to be at the bottom of a very deep well. Just didn't see it coming, I wasn't prepared. Even though the fall was quick, getting out seems to be a bit tougher. Oh there are days where my efforts are rewarded and I see that I have scratched and pulled myself up about 5-10 feet. I look up and see the light getting closer, bigger..and then it happens, I slip and bang, right back at the bottom of the well. This seems to happen over and over again.

Now my fellow travelers, those who are most dear to me in the entire world, they never criticize my path, rather they seem to come running from wherever they might be on their own part of this journey and they join together and try to come up with solutions to get me out of that well. Yet, how fair is that? They have all hit their own pitfalls along this road, of that I am sure. But nevertheless they are there. And despite their very best efforts, I am still at the bottome looking up at all of their faces.. feeling disappointed in myself and feeling that I have let them down.

Before this journey began I really did believe I was a pretty good tour guide, that I could navigate best for my friends and family. I had big plans for teaching my children these good techniques and preparedness. I guess that is the funny thing about journeys.. they never turn out quite as you thought they would.

And the funny thing about being at the bottom of a well.. it gives you a lot of time to think. Surprisingly my thoughts are not of doom and gloom..no, not at all.. the thoughts that fill my head are of my children and my husband. I see Zackary's big blue eyes full of devilish delight and I hear his sweet laughter as he calls after his sister. I hear the pitter patter of his chubby little feet as he shows off how good he is at running. I see my husband's face and I remember the first time I knew I was in love with him. How powerful that feeling was that it nearly blew me over. I instantly feel that feeling he gives me which just makes me want to be a better person. But most of all.. I see Bella...I see her smile. Its not just any smile.. it is an innocent, pure, perfectly angelic smile. It throws light down the well and almost blinds me for a second...but then my eyes adjust and her face is clear. She is at the top of the well and she is speaking to me, without words, she is telling me all I need to know to get out. Then she giggles that contagious, heartwarming giggle that wraps around me, it is as if she is laughing at how silly I am for getting stuck down there in the first place. I find myself pulling up, up and out.

I stand alone at the top of the well and look back down at where I have been for the last few days. And I say a quick prayer that I don't make a wrong turn like that again. I am not naive enough to think it may not happen again, or that I won't encounter other dangerous pitfalls but one thing is abundantly clear..I do have a guide, a teacher in the most unexpected form..for she is only 2 years old. Yet despite her youth and tiny size, she guides me so easily and gently, as if she has done this a million times before. She leaves me with no doubt that she is willing to do it a million more. Her love is unconditional and all she needs to do is smile and wrap her small arms around my neck. And for that moment, the next few steps light up in front of me. Not the whole path, because if I am learning nothing else, it is to go slow, take in all that is around me. Marvel at the beauty, one moment, one step at a time.