A little update on Lauren

Well I have many people ask for an update so I thought I would do it in a post for everyone.

Lauren gets regular appointments at Children's to see her neurologist and her metabolic specialist. She goes every 2-3 months. Then on top of that she goes for blood and urine tests monthly. These are always such a pain for me and the day is pretty much written off. She has to be fasting for these so I find that I want to go first thing in the morning when she wakes up it is best. I go in to get her and put the urine collection bag on her. This would be so much easier if she was a boy, so as not to be so graphic, boys can aim into the bag. Girls you have to make sure it would cover the whole area that urine would be coming from if leaking slowly. The bag sticks well but if the area is slightly wet it doesn't. We then get in the car with her getting fussy as she is hungry and wondering where her formula is. I have been able to make appointments lately but they are starting to tell me that they won't take them any more as she is getting older. That would mean once we are there that we have to wait up to 2 hours with her screaming cause she is hungry. The tests have to be done after fasting at least 4 hours and has to be done before noon so it only will work first thing. They almost never get the blood in the first try and have to poke her at least 3 times. Once they finally get it then I can feed her and hopefully get the urine sample if I put the bag on right. We are normally there from about 7-10 by the time they get us in and figured out what needs to be done and get the blood. Imagine what is going to happen if we don't have an appointment. I could take her directly to children's for this instead of a local lab but driving to downtown with her crying wouldn't be so great either. She is then fussy and cranky all day after and won't nap or anything.
Every 6 months she will get developmental tested as well as a spinal tap. These we aren't looking forward to at all. I know the risks and don't want her to have to go through the awful tests.
She is on her special low lysine diet and it seems to be working for her. We have figured out foods she can have and have ordered some special stuff for her. The dietitian keeps raising her level that she can have based on what her blood and urine is saying so we are way higher than we had been. I have no idea if the diet is actually doing anything for her though. It is supposed to be helping her to not be behind developmentally. There is only 4 kids world wide on this diet though. They all have a different form of the metabolic disorder and all were diagnosed after they showed signs at 10 months and older. All of these kids had learned to do things and then lost them after hospitalisation but Lauren was different she hadn't learned anything yet so didn't really lose the ability to do them. The only things that she is behind on is her gross motor skills and that is just strength in her muscles. Anyone would lose all muscle strength after not being able to move any body parts for 2 months. She is completely on track mentally she is just behind but catching up on moving. She can sit on her own and get to sitting on her own. She actually uses this to get around but sitting up and then spinning around and laying down then sitting again. She does the army crawl but doesn't go to far yet or too fast unless it is something she isn't allowed to be playing with. She is doing everything in the right order and really on track just a few months behind. I know she will catch up. She is even ahead on some things like her social skills and knowing all her body parts. She will point to them when you ask her. She knows toes knees, elbows, fingers, eyes, nose, mouth, teeth and tongue, hair and ears so she is actually ahead as doing all of these is about 20 months skills. She can drink out of a cup without the sippy top but she then figures that she can blow bubbles in it so I think it is safer for now to let her have the sippy top. She will use a spoon for pudding but not very well and prefers to use her fingers. She has the pincher grasp down perfectly but tends to just shove the pasta in when she gets that as she can get much more in at a time. She can say a few words that others understand and is trying to say so many more. She is always copying us even if it doesn't quite come out right. She can tell you what a duck and a cow say and will copy you if you say Baa for a sheep and oink for a pig but won't say those on her own. She sleeps through the night although she goes to bed at about 9 and gets up about 6 and it would be nice if it was just a little later. She loves swimming and the pool and loves putting her face under water. She tries to help dress herself and will put her own arms in the shirt for me as long as I put it over her head. She has finally figured out that sitting in the bathtub is much better and she can splash a lot better too. She is getting stronger and stronger everyday. Her attitude is getting stronger too which can be a bad thing but I think in the long run it will be good for her.

This was meant to be a short post but it ended up longer than I thought. I hope this answers any questions though but feel free to ask if you have any more.