Lauren's update

We had our appointment at Childrens on Thursday and it went great. Lauren now weighs 16.5 pounds which puts her back to the 50th percentile for weight. She was born at the 50th and she actually at one point dropped so low she wasn't on the chart anymore. Having her back to the 50th means that she is eating well. She did great for the EEG too. I was worried she wasn't going to sleep through it. We were supposed to sleep deprive her but we didn't. That was also the night that she decided to only get up at 3 to eat and that was it. We are down to only getting up once or maybe twice a night now which is great! She had her normal morning nap although I did get her up after an hour rather than letting her sleep longer. We went for the EEG and I fed her to sleep. I just felt bad cause normally her afternoon naps are 2 hours and after the 20 minute nap she got we had to wake her as it was part of the EEG to have her stimulated. We then went to meet with the metabolic doctor and the neurologist. This went good and they were happy that she was meeting all her milestones. They do feel that she will be behind with her speech though. She has a mutated form of this disorder and the 3 other kids worldwide that have had her form have all had speech delays. Not just a few months though, one boy was 4 before even saying mama. I can handle this though. I have a happy healthy living little girl, I will just have to use a few more words than planned with the signing.
We got her results back from her EEG while we were there and it came back NORMAL. Not just better than she had or showing no seizures. I mean she has NORMAL brain activity. This means that they are getting rid of her last seizure medication. They had originally told us that she would be on it till at least 5 and now it will be gone before she is 7 1/2 months old. I am a little nervous about removing it but I know she will do fine. It will also be nice to only have meds twice a day and no longer the orange pill that stains everything when she spits up.
We also met with the dietitian. This is where we will have some work figuring out her diet. She has to have spinal taps every 6 months for a couple of years and then it will be once a year. This will give a baseline for what her AASA levels are - this is the toxin that builds up in her brain- and then we will change her diet depending on the levels. Basically though she will be a vegetarian that can't have dairy or soy. Her protein will be very limited. She can have lots of fruits and veggies though so we have been given the green light to feed her those for now. She will also be started on a formula in a couple of months. I can still breastfeed a little but mostly it will be this special formula that will give her the nutrients she needs. Breast milk has lysine which is the amino acid they want to stay away from. She will most likely be on this formula for most of her life as she won't be able to have milk. The formula will give her the protein she needs but has the amino acid removed from it.
All in all she is perfect and doing great and that was all we cared about. So what if she has a large talking delay. I just hope she will be able to talk by kindergarten. We will keep working on it though and maybe she will surprise them with that as well.
From going from birth where we were told when she was 4 days old that she probably wouldn't make it to now where she is fine she just needs extra checkups, special diet and some meds she has come a long way.