So, we got some good news today. The last test that they did for Shindler's disease and it came back negative, so that's one more thing ruled out. They also got the results back from the cataract and conjunctiva biopsies, which neither showed any clues or abnormalities that they could see. So, our attending doctor for Neurology, Dr. Lerner told us that hopefully the gene sequencing test will give us some clues, but she may have something completely new that they haven't seen before, something they may call "Leah's disease", though it's not official of course. They can't seem to find any movement disorders that also cause cataracts.
She had been doing pretty well with the Tegritol since they started her on it, though they changed the administration of her dose a little a few days ago, which seems like it may have affected her. She was getting it 3 times a day, but we noticed that at about an hour or so before her next dose, the movements we coming back a little. So, they split up the same dose to 4 times a day, so that it was more even. But since the change, her movements seem to have increased and for the past couple of days, she really hasn't rested much. Zev and I take turns alternating between sleeping on the bed with her and on the sofa. Zev's turn was on Wednesday night, that day we started to noticed the increased movements. She stayed awake most of that night, and Zev stayed awake with her, trying desperately to put her to sleep. Of course, she didn't rest at all, she slept maybe about 30 minutes. The following day, I stayed with her most of the day while Zev caught up on some of his sleep and went to a doctor's appointment. He ended up sideswiping a car on his way there, it wasn't too bad, just a small scrape, and luckily the other driver was really nice (a rarity in LA). He's never gotten into a car accident, ever; so I'm sure the lack of sleep was the cause.
Last night, it was my turn to sleep with her, and again she stayed up all night and didn't sleep. She looked so tired and you could tell she wanted to sleep, but her movements kept her awake.
They gave her Tylenol, Benadryl, an extra dose of Clonapin, and Ativan. Neither of the drugs touched her, she stayed awake. They are going to see how she does tonight and maybe tomorrow they will change the Tegritol dose back to what it was.
We're exhausted and frustrated at the fact that we still don't know what she has, but we gain strength from her, when we see her fight and try to combat her movements, it helps us keep going. She really is an inspiration and although we have our moments of desperation, she keeps us going.
Sidenote: Zev is so tired right now, he was changing the baby's diaper and had gloves on, then he went to wash his hands and poured soap into his hands with the gloves still on, hahaha!
She had some physical therapy again today and her therapist said she was doing better with her exercises, she will hopefully continue to improve with time and practice.
So, they are talking about us possibly going home soon, maybe in a week or 2. We already started ordering the equipment she'll need at home. And our insurance is arranging for home nursing care to help us out once we go home. We are definitely going to have to move to a bigger apartment, since all this equipment most likely will not fit in our small one bedroom. We had planned on moving once the baby was bigger since all her stuff fits in our bedroom, but now that the circumstances have changes, we will need a lot more space. So, we already started looking for places in the same neighborhood, and we're going to go see some apartments tomorrow, while my mom stays with the baby.
In a way, I'm happy that we'll be home, and to be able to sleep in a bed, but on the other hand I'm terrified. It's so reassuring to know that there is a doctor at your disposal 24-7 at the hospital, so if something scary happens at home, it won't be as easy. At the same time though, she is so much more susceptible to getting sick at the hospital with all the bacteria floating around from other sick kids. Plus, they were telling us that babies tend to get better much faster when they go back home. Anyway, we'll see, hopefully we'll have a set date soon that I can share with you.
Leah failed her swallow study a couple days ago. She was having a lot of her movements still, which made it worse. Although she was able to swallow a couple times, her coordination was still not up to par with what they thought would be safe for her to swallow efficiently. The GI surgeons came by today to look at her, since she sill be getting a G-tube. This will allow us to take her home and continue feeding her through the tube, but not the NG-tube, which would be easy for her to pull out in about 2 seconds. They are trying to decide if they are going to do a fundoplication. It's a procedure where the very top of the stomach (fundus area) is wrapped around the base of the esophagus. The muscle tone of the stomach can then help pinch the top of the stomach closed, which would stop any acid reflux from happening. They haven't said they will do it for sure yet, but if they do, they want to do both the G-tube and the fundoplication at the same time. Hopefully we'l know by Monday and I can tell you then.
Alrighty, it's getting late and I'm a zombie at this point, so I'll go for now. Thank you once again to all the people who have sent us their suggestions and who have tried contacting other doctors for us. As well, and a big thanks to everyone who has donated or sent us messages on here or on the Facebook support. Your words really help us get through our day sometimes.