Another round

Spent another Friday in the Medical Day Unit at BC Childrens. Layla's biochemical Doctor applied for funding and was approved to have her participate in GeneDX genetic testing. They will be going through 25,000 genes looking for any abnormalities that may give us a diagnosis. She has already been a part of another team doing a very similar study (but in Canada vs. The States) so I have my fingers crossed that between these two groups something will be found. Something to give us an idea for our daughter's future. They required a large amount of blood again. I hate that that is what they need the most of. Blood work from hypotonic kids is so difficult to get. Because of no muscles tone, they cannot see the vein. They have to take an educated guess, put the needle in and move it around until they (hopefully) find a vein that will give them the blood they need. Might sound easier said than done but it is awful to watch. Layla has had them try for hours before, trying from both arms, both feet, both wrists and her fingers before getting the blood from her head.. Yes her head. Last time they had multiple nurses, an IV specialist and the anesthesiologist try to get the blood with no luck. Then, after all of that, they said we should just go home. I started crying. This was an emotional enough day as is.. Now they wanted to send us home saying today was basically for nothing. *sigh Coming another day will not make it any easier. It's never easy to watch your child be poked and prodded. We've come too far to give up now. We have to get some answers. This was one of the few times that Aaron took the day off work to come. Aaron spoke with the doctor and convinced her to send one more person to try. This time they sent someone from the blood clinic (imagine that) and she got it all! Now there were tears of joy, and lots of snuggles for Layla. That back story was just to give understanding to why I was so excited when this time around that woman from the blood clinic was the first one to come. And guess what, she got it all within the first two pokes. Thank goodness. Still lots of tears from my baby but at least it was for good reason.
After the blood work we prepared for a lumbar puncture. They gave her a numbing cream on her back and a sedative to help keep her calm. It didn't work. Possibly because she is so use to her sedative she takes to go to sleep at night that it is easier for her to fight through it. Or perhaps because they gave it to her just prior to doing the blood work (even though I mentioned how that didn't seem like the smartest timing to give her this medication). This was a sterile procedure so we had a private room. The nurse turned Layla on her side and created a curve in her spine by holding her head and bum close to her. Then the doctor inserted a needle into her lower spine. At first she was upset because there was a little bit of blood coming out with the cerebrospinal fluid which could have compromised the samples and meant she would need to take it out and reinsert but quickly it disappeared and turned into clear liquid drops. She collected in eight different vials about 10-20 drops.
With all the tests completed within the last year and these ones on Friday I feel like they have to find something. They have ruled out so much! The doctors have mentioned time and time again that they believe they give be able to give more answers than we have so far. For this group of tests we have to wait up to 6 months to get the results. So i'm not letting it consume my thoughts in the short term. In the short term we continue living life as we have and take things as they come.  
A couple people have asked me if getting answers will really change how we live. At first I thought not really. Since Layla's been around and especially post  the Ontario hospital stay our life has changed so much already. Right now we have a good routine going. I've got the feeding, meds and appointments down to a science and I even forget once in a while that this isn't the norm. If we got a diagnosis it would change how much effort I put into getting respite and going back to work at some point. It would change my patience level for Layla. It might change how many pictures and videos I take. It would change how often I am away from her. It would change if and when we would consider adopting another child. So yeah it will change a lot of things I suppose.. But change is my middle name, apparently. I have stopped believing that anything will come easy for us. Everything comes with perseverance and a lot of fight. We are forever changed.