Momma Bear

Addison's third birthday, as much as I can't believe it to be true, is in less than two months! Time flies...and it means that she will no longer receive services from First Steps. The plan after First Steps is to qualify for the Belton School Dist early childhood special education program. Having a diagnosis does not mean you are accepted. You have to be tested, observed, full out paperwork and attend meetings upon meetings to determine qualification and of what kind. This battle has been long and hard. My strength was tested, along with the patience. Addison has so many strengths, it's easy to look past her deficits and just see a beautiful girl full of vocab and smiles. If I would not have had some strong resources and knowledge in my corner, my daughter would have been left behind. 

Would have. 

That's right! Addison qualified for the school program and when she turns three in Janurary she will attend Grace! I was not giving up, even when it was expected that I didn't know our rights and could have easily taken things at face value and walked away...I stood, I fought, and we succeeded!

Mama Bear is a term I have so endearingly heard in these times from friends. Thank you to everyone who has listened to me vent these last few months, and those who gave me suggestions and encouragement. We did it!

 

My Why!

At Scentsy Family Reunion, and every training I've been to with Scentsy, the big question they always ask is "what's your why?" Why are you doing this? I thought I would share my why....

I was a teacher at Rainbow Center for communicative disorders for 3 years before having Addison. The day Addison was born, the pediatrician told us Addison had damage to her neck muscles. Torticollis. For the first month we were told to stretch and exercise her muscles, we did. At 1 month, it was decided it wasn't enough. Now, I always wanted to be a stay at home mom, but Matt was worried about the change in income. We just added a new family member to care for, how could be decrease our income?? But, it was now apparent, Addison needed therapy. Twice a week she had physical therapy at children's mercy and 3 times a week we went to the chiropractor. What full time job could I have? I became a stay at home mom, and I could take care of my daughter's needs. 

So where does Scentsy come in? I had a friend who sold this product I had only learned about at my baby shower (a warmer for the baby's room and a Scentsy buddy! Great gifts!) I watched my friend walk into my husband's work, her daughter in tow carrying a Scentsy buddy, and a woman working said "OMG you sell Scentsy??!?" And she placed a $45 order with a stranger right there. Umm I can do this. And bring in extra money. It may not make up my salary right off the bat, but we can go out to eat and not use our expected income. Something simple. 

Addison, now diagnosed with cerebral palsy and autism, still demands my constant attention and we have added more therapist to the mix. I can still work a business, for myself, and do all that I need to do. And my income can pay our monthly car payment, help pay house bills, pay for a family trip...and all I'm doing is taking my passion and love for Scentsy and sharing it with others. Who wouldn't want to be able to be with their family, and increase their friendships, help others see their why, and build a business in your name. All while smelling amazing and safe products. 

You can make this world shine!

My WHY!

She Is Who She Is

I have watched Addison bloom into such a wonderful, beautiful, smart, caring child. I love every minute I get to see her explore her world. In the past year, I have noticed she does her exploring a bit differently than other children her age. She has her quirks, and her struggles. After the second visit with her pediatrician where it was recommended that we visit a developmental specialist, we finally had our appointment this morning. Addison has been diagnosed with moderate autism. 

Before you respond, please know we don't need any sympathies or apologies. I have always said in this long journey of developmental delays, CP diagnosis, therapies, Botox etc....Addison would be the way she is no matter what any dr labeled her to be. She is who she is. We love her, are so proud of the strong, intelligent, smiling girl she is, and will always be there fighting in her corner for WHATEVER is best. And knowing more about her needs and the way Addison works, means we can do things the Addison way. She will have the best possible chance at achieving! So we see everything as a blessing, as it's the path we were meant to take....together.

Good news! X 2

Good news! Times 2-

1) The orthopedic surgeon says Addison is looking so good! He has kept her next Botox appointment in April, but says we will evaluate before then and we might get to cancel! Addison might go through this year with only 1 Botox treatment, and that is SO exciting!

2) Addison had a sedated MRI on Monday (1/27) and we got the results the next day. She has a few annormalities, but nothing that is concerning or causing any negative effects. Her right side of her skull and brain is still flattened, due to her positioning when she had severe torticollis. This is how much her neck pulled her head to the side:

She also has a cyst on her pituitary gland, it was there on her MRI at 4 months old and has not changed. This means her brain is healthy! We can now meet with the developmental specialist, start our behavior therapy, and get to the bottom of Addison's mind. It is a fantastically intriguing mind, she blows me away every day with her memory and smarts. 

Thanks for all the well wishes while Addison goes through these appointments. It means a lot to have such support and love during a stressful time! 

Old and the New

I never thought of me as being the blogger type, and I didn't know how often I would keep up with this...I think just as I am compelled, and my mind is over run by thought, is when I write. And considering I saw 11:30, 1:00, 3:00-4:30 last night...maybe I should get some blogging therapy in.

Dec 4, Addison had her fourth round of Botox. She got the biggest dose in her lower back muscles, they have stayed tight through two previous injections. I can tell it has made a difference this time as she is able to pass gas more easily and she moves more freely in certain ways. She has a follow-up at the end of this month and is scheduled for her fifth round in April. 

Another procedure we are having scheduled is another MRI. Addison had one at four months, but not all of your gray matter has formed at that point. We also need to check on how her brain has changed and look for any abnormalities remaining. When she suffered from severe torticollis, her head was very misshapen, mainly on the back right side. Her right lobe of her brain appeared much smaller and pushed inward. Her pediatrician wants to ensure it was simply the shape of her head and that her brain is doing ok.

The final appointment we have coming is with a developmental specialist. Addison is a pretty unique kid, and does some things that make me scratch my head! She's so very smart! She knows about 8 shapes, can count 1-10, knows all of her colors and can identify the letters A, B, and C. She has always had sensory issues, and requests squeezes often for her body and head. Addison had a behavior evaluation last week, and I shared that report with her pediatrician. From what her doctor gathered from this report, as well as our conversation yesterday, she decided Addison should be seen by the developmental specialist to evaluate all of Addison's needs together (as opposed to saying "she has a speech delay, let's add speech therapy" and so forth). This is a positive step and I am sure to post when these two appointments have been completed. 

I appreciate where every step has taken us, the people we have met and experienced Addison has had. I also don't fear  the future. Addison is who she is, and no appointment or label will change that. Answers only being you the appropriate and best help! 

Water a Flower, Watch it Grow

I am thankful for the triumph I see in Addison. Because of her life path, experiences and challenges, I hope she has a different perception of life. 

She has a serious diagnosis, but thanks to her early and aggressive intervention (and her smart, determined little self) she has been given a head start. She's made great strides, leaps and bounds really, no matter what has been said she may or not be or do (at 6 months of age I was told that Addison showed signs of autism and CP). But, she still is a part of the great cerebral palsy community. I hope she uses all she goes through and all she gets to experience (not only personally, but the wonderful people she meets) as a growing tool and to make a difference. For herself, and for others. 

I should add- I have met some wonderful people through this journey as well. The online family, as well as support system through family, friends, therapists, doctors, etc...it's a whole new world, someplace I never expected. No mom does. We all picture the perfect child and perfect world. I embrace the one we have been dropped into and am thankful for the good people in it with us! Thank you.

The Wonder Drug?

Ahhh Botox...hailed as the wonder drug by hopeful parents (such as myself) and orthopedic surgeons, frowned upon by the more natural types and therapists...what's best?

My answer? Whatever helps Addison. This is her third round of Botox treatments. And while she has had her life filled with PT, OT, and a chiropractor to aid along side the Botox, I have to look at the results. Her last 2 evaluation shows that gross motor is now her strongest developmental aspect. I have to believe that our concoction is working.

How it works (in a nut shell) is she is put under anesthesia and the Botox is inserted deep into certain muscles her doctor has chosen during appointments pre-op. he chooses a variety of muscles due to tightness and how they are effecting her comfort, body and movement. Today, he is focusing on her shoulder areas, a high dose in her lower back, her finger flexers in her arm, and low doses for a few muscles in parts of her upper and lower legs.

 The Botox deadens the muscles to help retrain the thinking to the brain, as well as help stretch the tightness without pain. The goal is to not loose muscle function. This is where therapists dislike the treatment...they hate going backwards, I hate the frustration. Addison lost function in her thighs last round, January, when she had just learned to pull up and start to cruise along the furniture. Hopefully this dosage is just right to make her feel great!

I appreciate everyone's thoughts for Addison...as I sit in this waiting room for the third time, I feel like its the first time, for I am alone. Matt was unable to get off of work. I feel like I have more worries, I guess I need to be concerned for 2. I know he is thinking of her and wishes he could be here for us both.