Short medical update

So things have been going pretty well with the baby. I have had few appointments this month, but November will be slammin'. We have urology apts, genetics apts,, MRI apts and NS (neurosurgery) appointments. I am actually very optimistic about the MRI and NS apts. I have been praying and believing and many of you have been believing with me that Evangeline will be among the 10% of babies with lumbar lesions that don't need a shunt. All signs at the moment (at least to my untrained eye) tell me that she will win those odds.

As you may remember our last NS apt showed mild hydrocephalus and enlarged vents. Her soft spots were soft, but very large as the plates in her head (one running around the front and one going down the middle) had separated. Those gaps are now NOTICEABLY smaller.  I don't think bone grows that quickly so I can only assume that it means the fluid is decreasing allowing the plates to fall back in place. I am actually looking forward to seeing the next MRI as I think it will be cause for a celebration. And believe me, I am already planning one in my head. Invites will be sent and wine bottles opened, and tears will be flowing down over big old smiles.  So stay tuned for that report mid November. I am already thanking God for it before I even see the MRI.  Those of you who are waiting with me for miracles may soon have one more to add to the growing list.

The only cloud in our sunny life lately has been poo.  Evangeline is getting all backed up and it takes Karo syrup in every baa (bottle) to just keep the works going.....in any fashion whatsoever.  Bless her, she has been so uncomfortable. She strains and grunts in her sleep and her little face turns red and she doesn't want to eat as much because her tummy is full.  So, I call her pediatrician yesterday and end up speaking to the PA.  The conversation goes something like this:

Me: I have been putting Karo in every bottle and she's not going very much and what she is doing is like clay and she's uncomfortable. What more can I do?
PA: Well, she has spina bifida. The nerves aren't enervating her stomach properly.
Me: Yes ma'am, but how can I help her? I have actually ordered some probiotics for babies that I plan to try but I want to know what else I can do.
PA: You can try the probiotics but they probably won't do anything.
Me: They won't?
PA: No she has spina bifida and she lacks the proper connections in her bowels.
Me: Ok then, but how can I HELP her?
PA: Well, you can try giving her some juice. Mix apple and white grape juice and give it to her warm.
Me: Is that safe for a 7 week old baby?
PA: Yes, but it probably won't help.
Me: So, juice and probiotics won't help.... what will?
At this point she launches into the whole SB blah blah blah nerves blah blah nothing you can do blah bla bla. And I'm all thinking seriously? This is how you want me to help my child? By assuming that she's stuck being uncomfortable? 

Suddenly I took a little mental vacation. Right there on the phone with her while she spoke. Those of you that know me well, know I always relate things to other things (usually some cartoon or random song but this time it was with a country...why, who knows.... I'm just saying this is what I was thinking when she was talking....) I imagined her voice taking on a thick Russian accent as I hearkened back to the days when the USSR was a power to be reckoned with and all the people there just had to "learn to live with it".

"Leave fighting to Bolshavics." I could hear her say, "Save your energy. Life is life and ve must learn to live vith it. Come, I tell you joke to cheer you up....

"One day inspector left from St. Petersburg to check on farmers in outlying area. First farm he came to he valked up to farmer and asked, "You grow potatos here, do you not?"
"Oh yes," replies farmer, "Ve grow potatoes."
"Show me your crop" says inspector.
"Certainly" says farmer, "I take you to cellar right avay, but as ve valk, I vill tell you about my potatoes.  Ve grow many potatoes this season! Big potatoes. Fat potatoes.  So many potatoes that if you stack them up in little narrow pile they vill touch the feet of God!"
"That is impressive," says inspector, "but you are forgetting one thing, comrade. In mother Russia, ve are enlightened men. There is no God."
"Then ve understand each other," says farmer, "There are no potatoes either!"

 I remembered this old joke as she was going on about appreciating the fact Evangeline was pooping at all, and it reminded me of something important. In my world there is a God. And because of that, I can believe for the unbelievable. Because of God, I already have a harvest of miracles and I choose to keep believing for more. Not out of greed, but because God is who God is... and he keeps His promises. I can trust in that. In the meantime, I wait for the probiotics to come in the mail and will be giving her some juice. I will report back here as soon as Evangeline's poo changes consistency and frequency. I will likely title the post "She was wrong. It did help."  lol  Hope and God still live here and always will.