Moving on

On Tuesday Marley had a VCUG test to test her bladder function. She cried a bit as they were inserting the catheter (but who hasn't?) but once it was in she was all smiles. The test took a mere 10 minutes and she even graced us with a huge poop during the procedure. 

Once the test was completed (and she passed with flying colors), I contacted her neurosurgeon's office to schedule her surgery to repair her tethered spinal cord. December 17th is the date and will only be delayed if there is a more serious case (like a brain tumor) that would take precedent.

It feels good to have finally have a surgery date. Finally we can cross off one of her "issues" off our to-do list.

24 hours in the PICU

So my worst fear came true. Marley had a seizure.

The last 7 1/2 months have been a waiting game. 88% of babies with her syndrome have seizures. I always wanted to believe that she would be the lucky one- but she isn't.

On Tuesday she came down with a runny nose. Tuesday night was a really long night for all of us. She was awake every hour and half- miserable. On Wednesday the nasal congestion got worse- there was baby shot everywhere. And she was increasingly becoming more irritable. She felt "warm" but her temp was always normal. I gave her her last bottle at bedtime and 20 mins later she threw up all over me. And she felt hot. I checked her temp and it was 100, plus she was extremely lethargic. My mother and nurse instinct told me that something wasn't right. We left immediately for the ER.

Within 5 minutes of our arrival (before she was even admitted) she began seizing. Her body became rigid and her face turned white then blue. She was not breathing at all. I ran into the ER and 10 doctors and nurses surrounded her. The seizure ended after 2 minutes and she began to breathe on her own. 8 needle sticks later an IV was started and we were transferred via ambulance to another hospital with a pediatric intensive care unit for observation. Her temp after the seizure was 103.

During the night her temp stabilized but she had another, shorter seizure. He O2 sat dropped again but rebounded with some supplemental O2. A doctor performed a lumbar puncture to rule out meningitis. It was negative. Her bloodwork was essentially normal meaning that she most likely has a viral infection- which means no antibiotics. She continued to be stable for the rest of the night- receiving motrin and tylenol around the clock.

In the morning we met with a neurologist who discussed that the seizures were probably related to her syndrome and that the fever lowered her threshold for the seizures to occur. He ordered an EEG which did not show any seizure activity but that doesn't mean that she won't have another. It did mean that we didn't need to start her on anti-seizure medications which can have "unfavorable" side effects. 

24 hours after this nightmare began, we finally went home. Marley is still congested and she coughs a lot. We saw her pediatrician today who recommends that we keep a watchful eye on her. I'm checking her temperature every 30 minutes and continuing to alternate doses of Motrin and Tylenol.

This has just been so surreal. I just had so much hope that Marley would make it to a year without any seizures. I know febrile seizures are common in babies her age but I had no idea that a little nasal congestion could so quickly turn into a major seizure. I am so afraid of her catching another cold. My instinct is so become on of those hyper germ phobic mothers who bleach everything in site. But I don't want to be that person. That would make me feel even more insane. But how do I protect her? 

This is truly one of the worse experiences I have ever gone through.

Scoot, scoot, scoot

You know who I love? Early Start therapists. Early Start is an early intervention program created and funded by your tax dollars to help children with disabilities ages 0-3 years. It's aim is to "intervene" during the period of greatest brain development to mitigate the the degree of disability. 

Our therapists, Linda (a hearing/speech specialist) and Lydia (a physical therapist) come to our apartment every few weeks to evaluate Marley's development, work with her on her skills and answer any questions that we have. And did I mention that it is free? Yes, your taxes are actually being used for something good.

Anyway, I admit that I experience a sort of "high" after these wonderful ladies have visited. Working everyday with Marley, I have a hard time seeing the progress that she's making. Sometimes it's downright frustrating to not see her just sit up or crawl like so many other babies seem to do. When Linda and Lydia are here they always exclaim how much Marley has changed since their last visit. The point out the small things such as her stronger arm strength, her proactive grasping of objects and her increased flexibility. Maybe it's not the big milestones of sitting up unassisted or crawling but they are smaller milestones that are necessary to reach the big ones. Plus, they praise me for the work I have been doing; that really means the world to me.

I'm still impatient.  I can't wait for her to crawl, stand and walk. I really can't understand why other moms lament about how quickly their babies grow up. I guess that's one of the things that sets us apart and makes our worlds so different. When you have a special needs child, developmental milestones can't come quickly enough.