Gracie had her final follow up with out ENT on Thursday, Nov 21st. And he gave her the "all clear'!!! Like, we never have to go back unless we need something. WOW. She is healing well which was a relief as her scar was looking a little, well, puffy. Fortunately, it was just the result of the internal stitches dissolving and healing. He said that over time, the scarred area will flatten out and eventually the color will fade. I am still stuck on the fact that we don't have to see specialists all the time anymore. I mean, that has been our life for so long and now we just have a pediatrician! And an eye doctor, but still.....
Just for posterity and perspective, here is a list of the appointments and people who have helped us (aka Gracie's "team"):
Here is a list of procedures that Gracie has conquered:
Here are some unexpected skills that Ramsey and I acquired:
And now we are DONE. PHEW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I now literally have gray hair and the MOST AMAZING daughter anyone could possibly imagine. And the BEST husband. I mean, seriously, he's a rock star. We feel nothing but exceedingly thankful. And tired ;) But the little things like watching Gracie breathe, eat, play with friends, and yell and sing at the top of her lungs, will never get old. I just knew she could do it!!! AMAZING GRACIE- WE LOVE YOU!!!!!!!!!!!!!!!!!!!!!
Just for posterity and perspective, here is a list of the appointments and people who have helped us (aka Gracie's "team"):
- ENT- monthly or bimonthly
- Plumonologist- monthly or bimonthly
- GI- monthly or bimonthly
- OT- twice a week
- SLP- once a week
- Ophthalmologist- every 6-8 weeks
- Pediatrician- once a month or so
- Child Psychologist specializing in tube weaning- skype sessions as needed (he lives in Germany)
- Home nurse visits
- AZEIP- applications, meetings, nurse visits- they had a nurse who rode with me to all of G's appointments as I couldn't drive alone with her in the beginning.
- DDD- more applications, interviews, paperwork.
- Calls and correspondence with Case Manager from Health Insurance company
- Scheduling deliveries and placing monthly orders for medical equipment and supplies
- Consult with a geneticist
- Consult with Craneofacial Plastic Surgeon (he didn't recommend any surgery)
Here is a list of procedures that Gracie has conquered:
- 5 weeks in the PICU
- 3 Barium Swallow Studies
- Upper GI
- Endoscopy
- Tracheotomy
- CT scan
- MRI
- Sleep Study
- 4 Laryngoscopy/Bronchoscopy
- Strabismus Surgery
- Capped trial
- Stoma Closure Surgery
- Blood work
- Having that damn NG tube inserted down her nose and into her tummy on a regular basis
Here are some unexpected skills that Ramsey and I acquired:
- Tracheostomy Care- cleaning and changing of trach tube
- We can both place an NG tube
- We may as well be certified feeding therapists
- I am the acting insurance expert and advocate for the family
- We both know emergency CPR procedures including how to "bag" someone. Up until recently we even had an oxygen tank (which we THANKFULLY never had to use)
- We have owned and can operate the following: O2, Suction, Pulse-Oximeter, Feeding Pump, Nebulizer, Air Compressor for cool mist
And now we are DONE. PHEW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I now literally have gray hair and the MOST AMAZING daughter anyone could possibly imagine. And the BEST husband. I mean, seriously, he's a rock star. We feel nothing but exceedingly thankful. And tired ;) But the little things like watching Gracie breathe, eat, play with friends, and yell and sing at the top of her lungs, will never get old. I just knew she could do it!!! AMAZING GRACIE- WE LOVE YOU!!!!!!!!!!!!!!!!!!!!!