Great news after almost 10 months weight struggle for Olivia ( between 19-20 lb back and forth). She is finally back on the chart at 5% tile :) with a weight of 21 LB & 11oz. It has been very stressfull dealing every-week with therapyst,dietitian and doctors so hopefully she gets a break for a while with new feeding recipes since she gained a little. Livi is still in her baby-formula but they did take her off the protein and fiber substitute which appeared to effect her digestion so now that she has gone for a whole month without chocking spells she is more acceptant to try food by mouth…PRAISE THE LORD. I have made her a couple different soups (with her allowed veggies), and veggie pures so she seems to enjoy trying new tastes and textures everyday. So far her favorite munchie has been the “veggetable chips”…and Paco’s too bc we like to share a LOT ..haha
Like every doc. appt this one was no different since it seems like every good news comes with a “BUT” for us.
The nephrology Dr. brought to my attention that she is still not on the chart for her length (29.5 inch). If she wasn’t a kidney failure patient this wasn’t a big deal but they need to take action in Livi’s case. They did a “left hand bone age scan” today (x-ray) to measure where she stands age wise. This will decide if they start her on bone-grouth-hormone shots or not. It’s an everyday shot and it goes for a long time untill she reaches her stage. We really need everybody's prayer for this one… here are the pros and cons
PROS:
- It will help Olivia to be on a more healthy chart instead of getting her too heavy (raising her calories) which will affect her heart function.
-It will help her body grow so when she gets the transplant her body will be bigger to handle it.
CONS:
-it has to be given everyday (maybe by us) and she is traumatized by niddles/pain.
-The biggest side effects are the same as the symtoms of meningitis without having the bacteria in you ( constant bone pain & painfull headaches). The only way to relieve the pain is to actually “tap the spine” (is done by putting a niddle in your spine to extract the extra fluid).
It is such an overwhelming news and decision to take that my only hopes are to pray to GOD to continue to do miracles with our precious Livi. Peter and I are prepared for everything and we are aware that Olivia has a long-rockey road ahead of her but we’re praying for a painless one because that is very hard to see for both of us …
