Hello world. Happy New year!
How great is our God! It’s been a year since we checked into the feeding clinic at Baylor. One year ago today I felt like I was sent to prison and our family was again separated. Although I don’t give the feeding clinic great reviews, we learned a lot. And I am trying to focus on that.
We finally found a GI doc that understands Gabi!! Praise God! Dr. Channa reminded us to keep perspective and taught me how to increase calories on the things that Gabi is actually able to eat.
Gabi has lost some weight and isn’t growing like she should be. He height was the same at 36″ and her weight was at 37 lbs. I felt like a total failure. I still do. The doctor continued with the diagnosis failure to thrive. Even though we have heard those words over and over again, it still is like a knife in my back. I feel responsible and I feel like a failure. But the new doctor understood and gave me hope, encouragement and some ways to help. Adding olive oil and butter, lots of butter, to everything. Adding protein powder and taking vitamins will help. But it’s not easy to make Gabi seperate meals. It’s just not easy with 4 other children. She drinks half and half for her milk. It’s just not easy and I don’t do a very good job of it.
We had to increase her G-tube feedings but we do not have to go back to the nighttime pump. Thank our good Lord. I have not continued with the additional private therapies because it is SO expensive and pulling her out of school 2 mornings a week is hard. But in the future, I do need to bring her back for the vital stim treatments at least. It’s a new year and I know Gabi will take additional strides! She is due for a swallow study soon…
Her heart function is good, stable right now. Praise God!
I cannot emphasize how many blessings Gabi brings to our family. Each one of our children is a blessing but just when we get to our breaking point, another blessing is bestowed on us. God is so great. From helping with medical payments, to enjoying family time with others that understand and are going through similar trials, to the trip of a lifetime- we are so incredibly blessed and I am so humbled by the wonderful people that work to run organizations like these-
So, there is this amazing group of people that started Kenna’s Kids. I am so proud to say that they are my friends and I am honored to say that I know Kenna personally. They chose Gabi as one of their 2015 recipients and now in 2016 we can pay it forward! We are so grateful to Kenna’s Kids! Please check them out and help if you can.
Camp Jon Marc
What an amazing this camp is! All of the Baylor feeding clinic patients get invited to a weekend campout to the middle of no where Texas to Camp Jon Marc. It is a camp designed for special needs kids and the memories bring me tears… it was that awesome. God has brought SO many special people into our lives and I LOVE how it is affecting my other children. I should write an entire post on this camp.. that’s how amazing it is.
Gabi had her Make A Wish trip and I don’t think I have to say to you how amazing it was! These volunteers at the resort and those that coordinate the trip truly make God smile. What an amazing organization! Truly we had the time of our lives and like the skywriting says- Love God- We love God and all the blessings He has brought to our family.
I mean, seriously, from starting the year in the hospital to finishing it off at Disney World… I have no words just praise!
Much Love always,