We are nearing the one year "anniversary" of Sadie having her feeding tube. Crazy, right...that I remember this as an "anniversary". Not really something to celebrate, but hardly something I can forget.
I do think it funny how out of all the things going "on" with Sadie, her feeding tube always seems to be the top of discussion with other people (family, friends and complete strangers). I have more people ask me if she always be tube fed, or if she will ever eat "normal". Sometimes I am taken aback by that question. The sarcastic part of me wants to point out that there is little "normal" about Sadie in the first place, so to us, the feeding tube seems natural. Maybe because we are a society that focuses so much on food and eating that that is why it seems to be so important to others that she eats orally.
Ironically, this morning we were suppose to go in for her Oral Eval to see if she could start Oral Therapy, but can thank the weather AGAIN for postponing this. We have rescheduled/cancelled/rescheduled this appointment 5 times due to hospitalization, illness or snow days. I am only do the Eval because I feel I owe it to Sadie to give her every opportunity to be "normal", however, if she cannot start the program, I am good with that. Again, this is how God made her and intended her to be, so even though to many she is not "normal"...to us, she is PERFECT!
Oral Therapy is not a joke. It is EXTREMELY intense and takes a VERY long time. It is a very slow process. In the past, Sadie has not been able to participate in this due to her muscle weakness in her neck. Although there has been lots of improvement in this area, there is still a long way to go. Her prognosis at being successful is therapy is also unknown. Babies who HAVE eaten orally before statistically are more successful at oral therapy. However, although Sadie was eating orally at one point, she was doing it wrong...so, that throws statistics out the window.
Where at one point I literally mourned the loss of her eating orally, today I have embraced it. Before I thought it was such a huge loss of developmental progress, today I know it is what keeps her ALIVE!
When Sadie came home to us at 18 months old, she weighed 18 pounds. We learned that she was aspirating on everything we tried to feed to her. Half of what she ate was metabolized and processed correctly, and the other half went straight to her lungs and risked giving her bacterial pneumonia. Any medication that we gave her was almost always thrown up minutes later, so very much not effective and she was always near dehydration (even after coming home). This feeding tube not only gives us peace of mind that she is hydrated, medicated and accounted for HUGE weight gain and healthy growth...it gave her LIFE! So, not only have we embraced her feeding tube, we LOVE IT! Yup...I did this to her...
For Feeding Tube Awareness Week, I would like to challenge all of you to learn how to tube feed! No joke. It may seem scary, because it's different. But it's not...at all!
Do a loved a favor and learn how to care for their special child so that you can offer respite as a gift to them!! Do not be held back due to a feeding tube!! At 10 1/2 years old Ryleigh mastered it and now at 10 1/2 Kobe is begging to learn!
The Princess Sadie's Chariot Fundraiser continues....Thanks to MANY of you, $4,856.57 has been raised so far!! A-M-A-Z-I-N-G!!
If you are still looking to donate; click here for more information on that!
http://www.beutebunch.blogspot.com/2013/01/online-donation-for-sadies-chariot.html
Oh! You like Sadie's Tubie Whoobie? That is the ADORABLE heart around her feeding tube....go on facebook and search Tubie Whoobie. They are AWESOME!! They make GREAT gifts (hint....hint) for kids with feeding tubes. Not only do they help make something that to some appears scary....cute, but they also keep the stoma dry and clean...which is very important.
So, in recap....
HAPPY FEEDING TUBE AWARENESS WEEK!
No comments:
Post a Comment