PT with Moisés and I’m a Freaking Nervous Wreck

Usually I write what phase of therapy Lola is in, but we are continuing with the exercises Moisés had assigned before. The girl is doing awesome though! Moisés was so thrilled to see her creep backwards. He then asked if she cross creeps meaning putting one hand over the other in an effort to see what is next to her. Yes, she in fact did this a few days ago while we were doing mat work on her belly. I was lying to her side and sure enough she began to kind of creep in a circle to face me. I didn’t think much of it although I was stoked to watch her look for me, but Moisés said this is all part of the crawling process.

1. Holding head steady
2. Rolling back to front and front to back
3. Creeping backwards
4. Cross creeping
5. Creeping forward
6. Crawling

Well Lola has accomplished the first four, so Moisés thinks she is well one her way to creeping forward. Again her vision impairment seems to hold her back as nothing is that enticing to make her want to go forward. But as I mentioned before, Lola’s eyesight appears to be improving drastically. It’s amazing to watch her look at objects with curiosity and even better look at us! Moisés went on to tell us that just because an image (such as a MRI or CAT scan) says something does not mean that person can’t overcome the diagnosis. He said no two people are alike and while one baby with partial lissencephaly may not be able to ever do things like walk, talk and speak, others have a better prognosis because their bodies (more importantly their brains) compensate differently. Even though he shared his positive thoughts via email, he went on to say he thought she would be just fine. I asked about equipment she may need in the future as it will be cheaper to buy those items here than expect insurance to cover them in the States. I hesitantly asked if she would need a walker. He looked at Lola, he tilted his head, he smiled and he said “no, I do not think she will need a walker”. He made sure to follow it up with “they may try to get you to buy a walker, but she will not need one”. Which is precisely why Moisés will stay on to help us make those big decisions. Of course if someone you trust says your kid needs something, you comply, but I am very reserved about therapists and their desire to sell you things your kid really doesn’t need.

So after we discussed the pressing items, it was time for Lola to work. It is crazy to see how comfortable Lola is on her stomach now. What was once they worst possible thing you could do to her has actually turned into something she appears to enjoy.
[frame align=”center”][/frame] Moisés is continuing with operation “teach Lola to crawl” so he brought out the ever handy crawling belt. I took a video to share:

The rest of the time, Moisés simply made Lola feel what it’s like to have weight on her arms and legs, on her knees, on just one leg, on the other. These are all precursors to crawling. The poor babe did awesome for the first part of therapy, but those damn teeth are killing her. While she didn’t cry, you could tell she was just tuckered out as she kept just trying to lay her head down.
[frame align=”center”][/frame] [frame align=”center”][/frame] [frame align=”center”][/frame] We go back to OT with Melissa tomorrow since we had to cut the session short due to Lola’s seizures on Saturday. I know we will be working on Lola’s equilibrium in an effort to help her sit unassisted. Maybe the equilibrium device freaked Lola out so that’s why she seized!

In other news, it has been damn cold in Costa Rica. OK cold here is like in the low 70’s, but when you are used to sunny and 85 every day, dreary and 70 is chilly. I was bundled up last night as if it were winter outside which is why the reality of our move to Indy in December is getting a bit overwhelming for me! Lola sure looked cute in her little beanie hat although she is not a kid that likes clothes. She is going from weather where all she wears is a onesie and no socks to a place where she’ll be layered up in things foreign to her like shoes, socks and jackets!
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Finally, I may be taking a break from blogging. Not an actual “break” more like I will not be posting daily as I normally do. Life is feeling pretty overwhelming with the last round of clients coming to the hotel on Sunday, the packing, the selling, the change of medical system (thank God for our guardian angel who is helping us in Indy!!), leaving my parents, making our dogs fly on an airplane, going to a home that is now empty, me going back to work, my worries about Lola somehow not knowing me from being gone all day. For real, I could go on forever with this. Last week’s diagnosis and the seizures just emotionally exhausted me and I am drained. While I don’t want to leave my family, I kind of just want this move to be done already. This mind in overdrive is making me ill and I mean physically like throwing up at 4 this morning ill. I’ve been taking St. John’s Wort in an effort to help calm my nerves, but I can only hope that once we’re in Indy, my stress level evens itself out. My body, my mind and most importantly, my family can’t take this level of anxiety. It’s just not healthy. I feel like I don’t know who this anxious person is. It’s not me. Sure I have a tendency to worry here and there, but not to this extreme. I just want the more tranquila me back. I know she’s in there somewhere, I can only hope I can dig deep enough to find her again soon.

So if we are absent for a few days, please know nothing is wrong. This will be the first place I tell if something happens with Lola. As always, thank you to everyone who reads this blog and continues to support us with loving thoughts and meaningful prayers. You guys mean the world to our little family!