I thought it would be good to write about Lola just as a baby. Not as a baby with West Syndrome, not as a baby with cortical visual impairment, not as a baby with some delays. Just a baby.
Food: Lola has turned into a ravenous beast when it comes to food. It is crazy to think she was once on the “failure to thrive” line because the girl eats like a horse now. We don’t know what percentile she is in, but we know she is continuing to gain weight. Since her neuro is like our pediatrician, we don’t go to an actual pediatrician anymore. She can’t have vaccinations and Dr. Luna always measures her so there really is no point. The last at home weigh in I did for her (about two weeks ago) she was almost 16 lbs. She is not a big baby by any means, but she is healthy. She still eats formula (in which I’m still sad to not be breastfeeding) and she now eats at least two meals of solids a day. Her favorites are carrots and guava, but she’ll eat just about anything. I began her on chunky solids this week as she needs to learn how to chew. So as of this week she is also eating kiwi, avocado and squash by the baby chunks. At first she seemed a bit confused as to what she was supposed to do, but now she chews with no problems. We are still trying to get her to drink water with a touch of juice, but she thinks it is something to play with. So water bottle it is for now.
Sleep: Lola sleeps like a champ. It does not matter where she is, she can sleep. Whether it be in her stroller, car seat, swing, my arms, a strangers arms, wherever it doesn’t matter. As long as she is comfortable…she is out. She is not on a napping schedule as routines change daily, but she will usually take between 2 – 4 naps a day. We know that when she begins to rub her pretty little eyes, it’s time to put her down (when we are home). As long as she has her pacifier and her seahorse, she generally goes right to sleep. She likes her hair played with and lately she likes something to snuggle with. We’ve been giving her a baby to sleep with as she appears to want something close to her. It’s quite sweet to see. She never fights sleep. There is no rocking until she’s out, no bouncing, no nothing. Just lay me down and let me be is her motto. Same thing when it comes to sleeping at night. Usually her bedtime is between 6 – 8 pm. She will wake up between 4:30 – 6:30 am depending on how lucky we are. Some nights she will wake up once to eat and other nights she won’t. We are just getting over a period where she would get up to eat and then she would want to play for over an hour. But she would eventually fall back asleep, so no complaints here. She is still sleeping in her co-sleeper next to our bed. Call me a neurotic mother, but I will probably have seizure fears for a long time. I think because her seizures always took place when she was tired or asleep, I will continue to be on the look-out for them. I’m simply not ready for her to be in her own room. Rob is OK with it as he knows how much it means to me and I thank him for that.
Pacifier: Lola appears to slowly be weaning herself off of the pacifier. There once was a time where she couldn’t be in the car seat or the swing without it. I believe that because her vision is improving, she doesn’t need to be stimulated through the comforts of the pacifier as much. She likes to fall asleep with it, but other than that she seems to not need it. Actually a few times this week, she fell asleep without it as she played until she passed out. I don’t know when we’ll begin to wean her from the paci completely. For now she finds comfort in it, so I don’t feel it necessary to take it away from her yet.
Crying: It’s pretty simple…Lola rarely cries. I’m not saying this because she is a rock star kid or anything. It’s simply the truth. I don’t know if any of you remember when I wrote about having “That Baby“. Well, she isn’t that baby at all. She was a fussy baby, but as it turns out it was because she was hungry. West Syndrome babies have a tendency to not eat well. They will throw themselves off the boob or the bottle therefore they don’t eat as much as they should. Before she was diagnosed it was confusing. She would cry, but she had just got done eating. She appeared to eat so how could she be hungry still? I would offer her food all day long, but she just didn’t have a great interest in eating. So after Lola was diagnosed and put on steroids – she began to eat a lot and her crying subsided. Now that she is full, she never cries. If she does cry, it is indeed because she is hungry, she is wet or because she is tired. Yet Lola’s version of crying is really only fussing. Although the other night she had a full blown five minute cry (she had watery eyes, but her tears still have yet to make their appearance) and we knew why…she is teething.
Teeth: We haven’t seen any of these bad boys yet, but they are well on their way. Signs – constantly yanking on her ears, scratching at her face as if her mouth hurts, wanting cold items, chewing on everything in sight, a never ending river of drool coming out of her mouth and the occasional real cry. We have these wonderful gum massagers that she seems to like the most. She can chew on them forever in which it actually kind of hurts our fingers. She has a powerful jaw! We’ll also give her cold teethers that seem to help as well. On the rare occasion she appears to be in a lot of pain, we’ll give her a drop or two of baby Tylenol. I’ve noticed her gums are turning white and I think I saw a sliver opening today, but no signs of actual teeth appearing yet.
Diapers: We are going strong with the cloth diapers. We ordered the less expensive ones on eBay (still cost us $200) and they work great. Lola wears them all of the time while at home, but we do use disposables at night and when we go out. The wonderful thing about cloth diapering is obviously the cost as well as helping the environment, but Lola rarely gets diaper rash which is definitely an added bonus. She still has plenty of room to continue to grow into them which means it was money well spent.
So these are just some basics about Lola. I have dedicated this blog to Lola’s experience with West Syndrome and how she is recovering from it, but the truth is – she is still just a baby. Her life may have some hiccups, but she still eats, shits, sleeps, laughs and loves just as any other baby would.