Sick To My Stomach With Decisions

I think this is by far the most stress I've ever been under. I have been feeling very depressed, not about one specific thing, but a lot of things together. My body is doing something weird that's making me feel sick and tired often. "I have my suspicions, but we won't know for sure until we figure it out scientifically." (Jonah- Veggie Tales) But, of course, that's being put on the back burner due to Tesh's health status. I have 2 ornery kids that are acting out cause of all the chaos. My husband and I have made the decision to move because our income is just not cutting it for this house anymore. My poor Yeshua, he's trying so hard to keep things up and running.( and of course, having to deal with a "going crazy" wife)
I'm not nursing due to mucus coming out of every orphus when she intakes my (no lactose) breast milk. That still saddens me, greatly, but I've been learning to deal with it because she means more to me. I just wish we could figure out why. She's on just soy formula, but not sleeping well during the day. Very restless and agitated, but now there's very little to no mucus anywhere either. She has this lasting crud cough, that we can't figure out. She spits up undigested formula all the time, so now we are trying some acid reflux med. , which seems to be making things worse. (?)
We had our appt. with the neurosurgeon Dr. K last week. As he introduced himself, he also told us that our craniofacial specialist/plastic surgeon Dr. F (we had been meeting with Dr. F this whole time) is gone. He took a leave or something. So here we are standing in front of an actual neurosurgeon and he tells us his "team" doctor is gone. Dr. K was good about it though, he sat quietly as we digested all of this newness, so we could think of what to ask. I did like him, but I feel more comfortable with the "team" aspect about all of it. You see, Dr. K would be the one cutting bone and protecting the brain, whereas Dr. F was going to be the one shaping the skull, making it correct. Dr. K assured us that he was qualified to do this alone, but that, ultimately, it's our decision. He said we could go to Mayo (in MN) or Iowa City to find "the teams" but they are not here in town. I've got other "cranio moms" telling me that they would NOT let just an NS work on their child alone. Also, there is another suture that is fused, called a "metopic" suture (touch between your eyes and run your finger up your forehead), that none of the doctors breathed a word about, so now I'm confused as to what exactly is going on. And the "cranio moms" said that if that metopic suture IS fused and needs work that we NEED a plastic surgeon on it also. What do we do?? How do you, as a parent, pick which person is going to cut open your baby's head?? I feel so lost in all this.
Mean while, she's back on the charts, she's at 3rd percentile now, and everyone is happy about that, but I can't help but noticing that something else is going on. OF COURSE, these are two separate issues going on with our little Tesh.

You think I'm being tested? Maybe to see how much Kailan can cry? I found myself last night, pleading with Jesus to just hold me. I know that with the ministry that we aspire to be in, that there is a lot of pressure, my guess is that we need to learn to live under pressure? That's all I got though. I'll tell you one thing for sure though, my faith remains ultimately immovable. I will never stop believing that there is a God. I may feel at times that God has turned His back on us, but I'm reminded very quickly that He is merciful and compassionate. He'll get us through this, as He always does. A phrase Josh and I have adopted is, "Everything is going to be ok, we just don't know what ok looks like."













(top left) Profile shot: you can see how deformed her head has gotten from her brain pushing her skull back so it can keep growing. The cracks you see are sutures. Those are what they should be. (top right) This face-down shot shows you the fusing of her sagittal suture. There should be a suture going up and down. You can see a ridge where it's supposed to be, you can also feel it on her head. (bottom) Face shot: there should be a suture going up her forehead called the metopic suture. You can also see and feel a ridge there too.

It's crazy the technology that we have today. Thank God for it, this "gift" of ours has had too many close shaves away from death. That is a very unnerving thought process, but a very real one to me everyday.

If you run into me, give me a hug. Your hugs are God's hugs and they can be very healing...

.... as I'm typing this, I'm realizing that my 2 yr. old Eve, has her arms tightly around my shoulders. God is in everything that is love, even in a 2 yr. old that doesn't want to get off your lap. :)

Exodus 20:20 "And Moses said to the people, "Do not be afraid; for God has come in order to test you, and in order that the fear of Him may remain with you, so that you may not sin."
Deut. 8:2 "And you shall remember all the way which the Lord your God has led you in the wilderness these forty years, that He might humble you, testing you, to know what was in your heart, whether you would keep His commandments or not."
8:16 "In the wilderness He fed you manna which your fathers did not know, that He might humble you and that He might test you, to do good for you in the end. "
Job 7:17-18 " What is man that Thou dost magnify him, and that Thou art concerned about him, that Thou dost examine him every morning, and try him every moment?"
Psalms 139:23-24 "Search me, O God, and know my heart; Try me and know my anxious thoughts; and see if there be any hurtful way in me, and lead me in the everlasting way."