Lilly's Story. 23 months.

Well, my sweet Lilly is turning two next month.

Looks like she's getting a party. And I'm getting a good old fashioned breakdown.

It seems, that every time a birthday, special occasion, or milestone marker comes around, I go all crazy. I panic. I question myself. I question her progress and development. Am I doing enough for her? Did I push her enough this year? Should I have sought less traditional therapies? Seen more specialists? Will she ever walk? Will she ever talk? Will she ever eat normally? Is she okay where she is right now? Am I okay where we are right now? Will I be okay if these things never change? Because with a rare disease like hers, that is a strong possibility.

We spent this entire year hospital-free and are officially on maintenance appointments for all of her doctors. She is finally on well-baby only visits with her pediatrician. She had previously seen her every 4 weeks for weigh-in's.

We've added a few medicines, like Vitamin D supplements, and Sodium Citrate to control her acidosis. (acidosis of the blood can cause your body to create kidney stones) Her potassium has remained at the high end of normal without increasing the Fludrocortisone that she takes to control it. .(she is currently only taking 1/2 tablet a day---eventually she will take the whole pill)

Her kidneys are still very small. Her left kidney is only in the 13 percentile for size. Her right is smaller than her left and functioning okay for now. But they will keep an eye on this because having one small kidney can eventually lead to high blood pressure. If that were to happen, she would need to have the right kidney removed. There is also some significant scarring on her kidney's from all of last year's infections. Only time will tell on this.

She is now 23 months old and wears 12mo-18mo clothing. Weighs in at 20lbs and is about 31 inches tall. She wears a size 4 shoe. She is now the size of a small 1 year old. Just recently we were able to finally turn her car seat around to face forward. That was a BIG day for all of us!

She has been considered disabled by the state of NY and now receives special assistance on a Medicaid Care At Home Waiver. This is a program, where if you qualify, they assist you in effort to help keep your child at home and out of a group home or other full time care facility. This is a true blessing to our family. I cannot imagine her being anywhere but here with us.

She still sees her therapists through the state funded Early Intervention service. Her OT, PT, Speech/Feeding, Special Instruction, Deaf Teacher all come each week. Every weeks she has at least 12 hours of therapy. And although, her doctor's appointments have spread out, we still see a lot of specialists for check ups, ultrasounds and blood work on a weekly basis. She currently has 13+ doctor's.

She now has a gait trainer otherwise known as a medical walker. She is running in it now, from one end of the house to the other. Moving from room to room. Plopping down in front of her favorite tv shoes. Other than the fact that we are going to have to spackle and paint every single corner....we are ecstatic to see her getting around!!

She loves books and is learning to turn the page to see the next picture. She takes pieces out of puzzles, and shapes our of shape sorters. She loves spinning toys and pushing the buttons to create sounds and lights. We just got her a Hello Kitty karaoke machine, because she dances (sways) when the music is turned on...making us think she really likes it! She pops bubbles and shakes rattles now. She lifts her arms to say 'pick me up'. And although she doesn't crawl, she has learned to turn herself away toys, games, people she doesn't like.

We have brought in an OT that specialized in sensory therapy. Helping to connect/organize some of the neurological pathways to function better. She has recommended a weighted blanket to help her sleep better, an indoor swing to stimulate her, and shown us many activities that we can do with her to increase input for a non-mobile child. I am looking into animal therapy (horse, dog, etc) to see if that will help to move her development along and fighting my 1st appeal with Cigna to get her approved for an intensive feeding program at the children's hospital. (at the moment -they are only willing to approve her for 3 feeding sessions per LIFETIME!)

Because the Early Intervention program only lasts until your child is 3, at the end of this year we will start to discuss the special needs pre-school program. They will conduct an evaluation of her cognitive and developmental level. We will then visit and research our school options and eventually decide where to send her. Her therapists will then see her at school instead of in our home. All of this is both exciting and incredibly terrifying. You see, when you have a child that cannot speak, it is difficult to know exactly what has happened throughout her day. What if someone is mean to her? What if she is left alone? What if someone makes fun of her? Or worse, hurts her? Ahhhhh! I can't even THINK of this without tear's coming to my eyes!

This year I feel like we have graduated to the next level of being a special needs family. Although we have a long way to go, we are no longer rookies! We made it!!!!