So most of you know that we had a rough few weeks with Ayla vomiting for days and days after her weekly injections we do at home, and she lost a lot of weight.
After jumping through some hoops, i think we got it figured out. We were able to meet with her Rhuematologist last minute, the same day we were meeting with her "bone doctor" (endocrinologist) last week. She needs to be getting a certain amount of folic acid to counter act the side effects from her weekly injections. We have been giving her what they told us to 2 years ago, but apparently it should be 50% more. So we are going to try that for a few weeks, on top of antinausea meds and then do an experiment and take her off the antinausea meds and see what happens.
On a positive note: Ayla was discharged from endocrinlogy. As long as there is no more fractures and she doesn't go back on steroids long term, we don't need to see him anymore! Thank the Lord! Her bones are almost "normal". So we gotta just keep doing what we are doing. Calcium, vit D, therapy, and run and play and move lots to make her bones stronger.
Monday i took Ayla for her regular bloodwork she needs every 8 weeks or so. Wednesday, i recieved a call from the lab we get it done at as well as her specialist saying her labs were abnormal and to see a doctor ASAP. Her specialist is away at a conference, so i was able to connect with her secretary. It's Ayla's liver enzymes that are up, meaning her liver is overfunctioning. We were told to not give her her weekly injection this week, and no tylenol and retest on monday and have it sent "STAT". It's likely her medication that is doing this, it's always something they watch for. Liver and kidney function.
I'm not quite sure what this means, and will hopefully hear from her Rhuematologist early/mid next week about her lab results. The kicker is, when i took Ayla she was so angry to be getting bloodwork and it was comforting for her to know that it would be a long time before she would have to do it again....7 days is not a long time. She's going to be livid come Monday morning.
I'm a bit concerned about a relapse in her condition b/c she didn't get her treatment this week. Yesterday she was complaining of some stiffness. So we'll just have to leave it all with God and no He is in control of all this.
Something i read in a devotion earlier this week from "40 days with Jesus, Celebrating His Presence-" Day 1:
"...Sometimes My blessings come to you in mysterious ways: through pain and trouble. At such times you can know My goodness only through your trust in Me. Understanding will fail you, but trust will keep you close to Me."
I long to understand God's plan for our family and for Ayla as an individual. Sometimes i feel like it would make it all so much easier...if we just knew why. But then what would the point be? It wouldn't really stretch us as much as needing to trust Him with and in all things. It wouldn't really be that much of a light to others if we 'KNEW' or they 'KNEW'. We wouldn't really need to walk close with Him if we just 'got' it all...in fact we wouldn't really need Him at all would we? We would fool ourselves into thinking everything was about us...and not the Creator. Understanding....well, i guess it can be a slippery slope.
Proverbs 3:5-6
"Trust in the LORD with all your heart and lean not on your own understanding;in all your ways acknowledge him, and he will make your paths straight."
Something else that stands out in my head is a few weeks ago, some pastors, staff, and elders were praying over Ayla and our family because of the vomiting and what not she was experiencing with no rhyme or reason at the time (she didn't really throw up anymore after that); one of them mentioned that we could look back on this...all of what Ayla has gone through, and use it to remember what God has done in her and our life. That these memories would be like to stones that the Isrealites took out of the Jordan River after they crossed to always remember what God had done for them...for generations.
Joshua 4: 5b-7-"Each of you is to take up a stone on his shoulder, according to the number of the tribes of the Israelites, 6to serve as a sign among you. In the future, when your children ask you, ‘What do these stones mean?’ 7tell them that the flow of the Jordan was cut off before the ark of the covenant of the Lord. When it crossed the Jordan, the waters of the Jordan were cut off. These stones are to be a memorial to the people of Israel forever.”
Sorry for the lengthy update...i just had lots i wanted to share.
