6 months, that is what I told myself…

6 months with the feeding tube and she will be where we want her and we can take it out…

5 months, great gains but not nearly enough improvement orally to see the end in sight.

6 months will come and go, in a month we will see continued gains, but likely still have the feeding tube.

5 months, still no reasoning or explanation to why she will not eat enough to sustain herself. Still many pieces of the puzzle missing.

Many things marked off the list (Hallelujah!!), no brain abnormalities, no known food allergies, healthy biopsies of esophagus and stomach,

Some pieces of the puzzle fulfilled – Sensory Processing Disorder, In-toeing balance and foot drop (corrected with AFO and SMO bracing), Failure to Thrive (corrected with G-Tube)

Lots of specialists and therapists…

Gastroenterology, feeding team (comprised of gi doctor, psychologist, dietitian, speech language pathologist), neurologist, orthotists, speech therapy, occupational therapy, physical therapy.

So many tests, x-rays, procedures, a surgery, and changes…

More specialists and testing to come upon arrival with our move. (Genetics will be a big one!)

Prayers for healing, prayers for God to move, prayers for answers.

Praises that we have the tools to keep her healthy and well while we navigate the medical questions, testing, appointments and therapies. Praises that God has already likely answered prayers by protecting her from worse, allowing us to have the insight to know something wasn’t right.

Confusion.

Questions.

Tears.

Heartache.

Smiles.

Laughter.

Joy.

Knowledge.

Advocacy.

Prayers.

Patience.

Praise.

Becoming a special needs parent is so much of the above. The emotions change every day, you never know if they will have a good day or a bad day, but you push through because you love them. You fight for them when people say insensitive things, you fight for them when the doctors say they don’t know. You endure, you fight, you lose sleep, you become an expert vomit catcher. This is our life right now. It is messy some days, but it is beautiful, just like both of our amazing little girls.

This is not what I expected 6 months ago when they said feeding tube. I thought by now we would be at the end.

We are making headway.

But this crazy, incredible journey as special needs parents is still new, it only started just 6 months ago.