Monday, November 25, 2013

The Time We Were Told Our Baby Has Cerebral Palsy

Turns out Little Lola is not as lazy as we once thought, and there are medical reasons behind her immobility. To backtrack, when Lola was 4 months old I noticed her eye was turning irregularly and I mentioned it to Joe. We were mid-screenings with Ryan (pre-autism diagnosis) and Reese was already diagnosed with Duane's Syndrome and wearing glasses. And when I mentioned Lola's eye to Joe he looked at me, let out a heavy sigh and told me to leave it alone, nothing was wrong with her eyes. So I let it go.

Thankfully, I was tied up in evaluations with Ryan when Lola's 9 month well baby visit came around and Joe had to take her for me. Our pediatrician noted that her eye was turning inappropriately (aha!) and recommended we go to see a pediatric opthamologist. At 10 months -- or in August -- we took her to the eye doctor and they noted the strabismus and decided to watch her to see how it continued to develop over the next 6 months.

Right around the time this was all taking place Ryan was being diagnosed with autism and when we were talking to the developmental pediatrician about family history I mentioned the baby's developmental delays. Since there is an increased chance that we would have another child on the spectrum, he asked to see Lola. And we made an appointment for October. 

Meanwhile, in late September, when she was roughly 11 1/2 months old and she still wasn't moving regularly and had literally (the day before her 11th monthday) just started rolling, I called early intervention and had her evaluated. Her scores did not directly qualify her for services (they were borderline), but the evaluation team used professional judgement to qualify her for PT and therapy with a teacher for the visually impaired.

In October we met with the developmental pediatrician who said that cognitively, socially and verbally she was on par with other kids her age, but in terms of gross motor she was obviously behind. He diagnosed her with hypotonia, which is low muscle tone. Essentially her brain does not send signals to her muscles to contract when they are supposed to, or at least not as quickly as they are supposed to. As a result she is very flexible and, therefore, unstable. So this explained a lot of her delays. There is also a school of thought that links eye issues with hypotonia, so there's that theory too.

By November Lola had regularly been receiving therapy for just about a month and we (Joe, her therapists and I) were all pretty convinced that her biggest issue was vision. She's made slow progress, but she is still very cautious and she has issues with depth perception and spatial awareness. Not wanting to wait for February before getting this kid some glasses or an eye patch, I called the opthamologist and asked to come in this month and have her rechecked. This is four months after her last visit, so still a good amount of time to view progress. So we went to her follow up appointment last week, and that is when the shit literally hit the fan.

Now ladies, when I named this blog "It's Always Something" I didn't actually think it would always be something. But jesus freaking christ. It really is.

We get to the pediatric opthamologist last Thursday, with our reports from her EI team in hand, totally prepared to have to get her special glasses or a patch. Instead he evaluates her, determines that she has no vision in her left periphery and an over-tight eye muscle that causes one eye to be higher than the other (this is correctable with surgery later on). And with the loss of left peripheral vision he delivers the following statement WITH A SMILE ON HIS FACE: "Good news, folks! Her loss of vision has nothing to do with her eyesight at all. It's neurological! So you can call your pediatrician and developmental pediatrician and have them coordinate an MRI."

I asked him who I should call first when we left the appointment and he laughed telling me I should wait for his office to transcribe the notes from the appointment and then call. And when I asked how long that would take he told me 7-10 business days. To wait for him to type a letter and mail it, so I could talk to my pediatrician about my 13 month old baby needing an MRI. I don't freaking think so, scooter. And with that I called my pediatrician's office as soon as I got into the car and spoke to one of the nurses. I explained the situation and I explained the opthamologist telling me it would take upwards of two weeks for a letter to get to his office. My pediatrician was out of the office on Thursday and by Friday morning at 8:15 he had already called and told me to come in with Lola for an evaluation.

I love my pediatrician.

So on Friday at 4 p.m. the baby and I went to the doctor and he sat with us and tested her reflexes, asked some questions and told me some of the worst news that I had gotten in a while. We were moving forward with an MRI. They were looking for a fetal infection that may be causing her eye issues or delays, and they were also trying to rule out cerebral palsy.

Cerebral palsy. My heart sank. I had the easiest pregnancy and a complication-free delivery. I've never had any STD's or major health issues. I wasn't even Group B Strep positive with her. And yet, here we were facing some possible horrible outcome.

Usually it takes 3-5 weeks to get in for an MRI and another 4-7 months to be seen by a pediatric neurologist. Our pediatrician had both appointments scheduled for us in less than 72 hours.

I love my pediatrician.

On Wednesday we took Lola to the hospital for her MRI. She was her normal smiling, happy, playful self, even though she had been NPO (without food or drink) for several hours. Her disposition only magnified how horrible the possibilities were. I held my baby while they administered anesthesia, which she didn't fight, even though I could see the fear in her eyes. And then I left the room so they could intubate her and start her IV.

The whole procedure was supposed to take 45 minutes and nearly an hour later a nurse came out to update us that they wanted to take a few more pictures after some of the screens they had gotten and that she'd be in there for another half hour or so. And our hearts sunk again. We thought this can't be good. None of this can be good.

After 90 minutes, we were able to go back and sit with her and wait for her to wake up. She was fussy and disoriented, but she had done great and we were ready to go home. After napping in the car and eating dinner she was back to her laughing, playful self.

Thursday morning our pediatrician called us to let us know that the initial read of the MRI had come in and her MRI was clear. No brain damage, no signs of any trauma. No cerebral palsy. And then we cried. Hot streaming tears of thankfulness and relief and confusion.

Thursday afternoon we went to see the pediatric neurologist. She called our MRI and our visit "unremarkable". She confirmed that the baby has low tone (hypotonia) but said that she sees her catching up between now and her second birthday. She gave the side-eye to the opthamologist's declaration that Lola has a loss of vision in her left periphery (hemianopsia), noting that this is one of the hardest things to diagnose in a child period, let alone diagnose in an infant. She ordered a bloodwork panel to check muscle enzymes and Lola's thyroid, "just to cover our bases", and requested we see a pediatric neuro-opthamologist for a second opinion on her eye issues. The neurologist thinks that the opthamologist made a bad call.

My baby went under anesthesia, was intubated and given an MRI because a doctor made a bad call. And if I wasn't so very, unbelievably thankful that she is healthy I would be incredibly angry that we went through all of this. I keep reminding myself that knowledge is power and it is better to have answers than wonder.

So we'll go see a few more doctors, do a few more tests, keep going with therapy, switch eye doctors (duh) and hope that when she sees the new eye doctor in February that he gives her glasses, which is really probably what she needed all along.

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