And Of Course, a Lola Update

Lola has been one busy little girl which means that makes us busy by default. I’ve said it before and I’ll say it again, to us Lola is just Lola. Sure we know she has challenges and quirks, crazy schedules and many appointments, medicines and much much more but that is the life of our little girl. It’s the only life with a child that we know. When I don’t post about Lola, it’s simply because Lola is just busy being a typical toddler. She’s sassy and hornery. She is on a food strike where all she wants is peanut butter sandwiches and crunchy snacks. She throws fits because she can’t voice what she wants which has led us to believe that “the terrible twos” really do exist. She plays like any other kid, she loves like any other kid (and boy does she love), she fusses like any other kid. She’s just Lola. But when medical things come up you are reminded that life for Lola is not that typical after all.

It was suggested by one of Lola’s therapists to have a nutritionist from First Steps come out to have Lola evaluated. Lola has always been on the tall and thin side, but her weight has always been a nagging worry in the back of my mind as well. The nutritionist paid us a visit and after many questions and measurements, it was decided that Lola could benefit from the help of a nutritionist after all. Thankfully as Lola’s parents, we were told we have done everything just right in regards to the types of foods we give her, the quantity, the vitamins we supplement with as well as foods that we refuse to give her. As any new parent would, you always wonder if what you’re doing for your child is right. Throw in a few special needs and you question even more.

Along with the lack of weight gain — how do I put this next phrase in a way that won’t embarrass Lola some day? Well, sister has many epic diaper blow outs…and kind of all the time. At her last wellness visit with her pediatrician, her doctor posed the question “is this just Lola or is there something greater going on with her GI system?. After a quick referral to a pediatric gastroenterologist, we have begun the processs of trying to answer that very question. Blood work was ordered to check levels of iron as well test for diseases like Crohn’s and thankfully that has all come back normal. Next we took stool samples and now we’ll wait the next few weeks to get those results back. My biggest concern with all of this has been — is this another symptom of that impossible to diagnose condition? All those involved seem to think no, but that’s why we’re looking deeper into the issue.

And as if this wasn’t enough.

Lola had her six month check-up with her neurologist, Dr. Jennifer Zimmer. A few weeks before the appointment, we received a letter stating that Dr. Zimmer would be leaving her practice as she had found a new job. Heartbroken, distraught, worried and crazy pregnant emotional is how I felt when I began to sob like a child in her office. I’m laughing now as to how insane I must have looked, but hey — that’s how much this woman means to our family. The tears were flowing and I mean flowing when she interrupted by saying that she would still see patients once a week and Lola could be one of them. I thought it would be quite inappropriate to jump up and hug her, but Rob could see the look of joy that took over my tear stained face.

We had high hopes to take Lola off of the Trileptal (her anti-seizure medication) as she has been on it for over two years. In fact, that was the goal of our visit. But remember, Lola had a 24 hour Video EEG back in November that showed abnormal brain signals that could possibly lead to seizures. With that in mind, we were left with a difficult decision. See in Costa Rica, Lola went straight from the steroids (to get the seizures under control) to the Trileptal. We were never given the chance to see if Lola could be seizure free without any medication. So we are left not knowing if the medicine is keeping Lola seizure free or if she has just outgrown the seizures. Dr. Zimmer told us about a rare episode called SUDEP – Sudden Unexplained Death in Epilepsy Patients. Of course the second she said death and my child’s name in the same sentence, I didn’t need to hear any more. Lola would stay on the medication until November and we would repeat the 24 hour Video EEG again. Now I know Dr. Zimmer had to tell us about SUDEP, but after doing my own research and reading countless stories about young children who have died from SUDEP, this is just one chance I’m not willing to take. Not yet. If the next EEG comes back abnormal again, well…well we’ll look at our options then. Thankfully the Trileptal has minimal side effects the greatest for Lola is drowsiness, but we were given the OK to slightly reduce the morning dose. Overall, Dr. Zimmer thought Lola looked great. She was more engaged, she made great eye contact, she mimicked words and she was all over the entire office which Dr. Zimmer loved to see. She was quite pleased with Lola’s progress and development and she vowed to see us again in November. Whew. Pregnant woman crisis diverted.

So while Lola has had some life hiccups lately, I’d say she is doing pretty darn good. I don’t post about every inchstone (you better believe the milestones are front page Say Hola Lola news) because Lola is doing something so amazingly cool and new every single day. We’ve learned that she will have peaks, lulls and plateaus. I internally celebrate when she has figured something new out and I cheer her on like a crazed cheerleader when she is looking for that reinforcement. While I will always continue to push her, I’ve learned that if I sit back and enjoy her rather than expect things out of her, I am a much better mother to her.

These days she stands all throughout the entire house and she tries so hard to take unassisted steps (three the other day!!). She says words like up, cup, duck, dad, dog, dink (drink), nak (snack) as well as a couple of words we’d prefer her not to say (she must have learned those from her father!). She can accurately and purposefully play with almost every toy she owns. She still has a difficult time with spoon feeding, but she’ll get there in her own time. She’ll take off her pants and attempt at her diaper and shirt when it’s bath time. And she knows that when the bath water starts to go down the drain that it’s time to stand up to get out. She is putting together life in a way that she can understand which is all we can ask of her. In spite of the few medical issues we have been presented with, we are still very lucky and never does a day go by that we don’t say thanks for her health.

Well it’s Sunday, I have the day off and we have been blessed with a visit from Rob’s mom so I’m off to enjoy life.