Overwhelming...

I don't even know where to begin to summarize the day. I feel as if everything I thought is knew has been turned upside down and I have to learn everything all over again. There's a lot to tell but there's a lot I'm not ready to just yet, there's still that feeling of what if...what if it isn't really this. 

Today we saw GI, Immunology, Genetics, and Vascular malformations. These were some of the most informative visits we've ever had with Alana. 

The GI doctor precedes his reputation. He walked in, shook her hand, and said "Hello BEAUTIFUL!" And the rest of the appointment went that way. The tests from yesterday came back normal as he expected they would be. He didn't have a lot to offer just yet, he needs to see what the 4 tests from next week show. Those are really going to bring us some answers. This ended up being more information gathering and making sure we were all on the same page.

Next was immunology. I can tell you a few things here I know: 

1- The doctor we saw who is assisting the main doctor is lucky she still has her teeth. Just saying. 

2- The doctor we have seen in the past and then got to see is as elequant as usually. 

"When I look into binoculars I can see the stars, but when I look into my telescope, I can see the galaxy and this is where we are going to find Alana." 

I am going to stop here for a minute. This is going to seem discombobulated and might not make a great deal of sense. The reason so is this, we've spent so much time searching for answers for her. What makes things so hard for her? What makes things so different for her? Why? People question Alana's behavior, they question mine. Is she a brat? Is she babied? Am I too protective? To answer those questions no.

No, no, no. 

There's been so much about her we didn't know, didn't understand. The answers appear in reach, finally, possibly, potentially. 

Immunology is excited. There's no other way to put it. You have to remember that here Alana is difficult and complex but so is the other 20 kids sitting in the waiting room so that gives the doctors here a much, much larger pool to pull their knowledge from. You've heard me say it once and then a million times after that, we have the most amazing ped. for Alana that one could ever ask for. One of the things that makes her so amazing is her ability to say wait, I need help. Without her we'd never be where we are today with Alana and Alana might not even be here herself. Anyway what I mean to say is to us Alana is unique, here she is unique as well but in a workable way. 

Immunology is doing a bone marrow biopsy next Wednesday. 

They know what they are looking for. In fact the statement was made that now it's a "prove me wrong" situation (that's the should-be-missing-teeth doctor talking). That is how confidant she feels this is it. This is 1 of 2 problems (they feel) Alana has. 3 hours long. That is how long this appointment was. My heart was breaking and sinking with each test added, with each mention of galaxies and what we know and what we don't. At Alana's pleading eyes of confusion and concern when they talk over her and I have no escape for her besides her headphones and music or TJ who has kept her distracted with card games and jokes and hugs and everything else he has done to make her feel like he's got her back. 

I'm tired. 

He's tired. 

Most of all Alana is tired. She's scared. She's worried. 

After that we were rushed up to genetics. Again we have been blessed by an amazing doctor. This doctor was picked specifically for Alana by the GI doctor after reading her chart. These two had something up their sleeves I didn't know about...a plan, an answer if the puzzle pieces fell flat. He talks, he listens, he reads reports, he examines her. Her examines me. He leans back and starts talking as if I am suppose to know what the hell he's talking about. "This is typical..." followed by "this is a treatment option..." as he goes on to explain 

                                                          Every

                                                                   Single 

                                                                             Thing

about her that we know to be true and fast. I stop him here, wait. Wait a minute. Are you telling me you think this is it?? You think you have an answer? How does it play with what immunology just told me that they have the answer? What makes you so sure you do? He then explained it all and told us why. 

Everything changed. 

25 tests now were added to the bone marrow biopsy. Rush appointments were made with endocrinology. Special PT meetings, more labs than she has ever had done. A CT with contrast to look at the vessels of her heart, etc. etc. Overwhelming. 

After that we saw vascular malformations and they feel that genetics now needs to take the lead and be the ring master in this 10 ring circus. They feel that what they found could indeed be something they need to address but they need to see the results of the CT scan to see what role they might need to play. 

From here on out it gets hard and it is going to be everything we have to try and offer her comfort and love while she's pushed to her limits and beyond. She has so many questions tonight and I don't have the answer to them nor do I even know where to look for them without muddying the waters. 

Tonight we stayed seated extra long at a restaurant. They had Easter eggs out for the kids to dye but a couple of younger little men used them all up happily decorating. We asked if they wouldn't mind making some more and after about 15 min they were able too so we sat and talked and waited. During this time Alana asked us if we found the end of a rainbow what would we find? She knew what she would find, Infinity wishes. That right there tells me that while her mind is troubled, and her body is tired and she is scared, she's still Alana. Smiling, brave, kind, and amazing.