Things Are Looking Up

Has it really been 2 ½ weeks since I last posted and is it already Christmas week? Sorry! Time is flying by, things are very busy at our house between getting ready for the holidays, with a major increase in appointments for Lucas’ new therapy and other follow ups this month, and Bran and I are both trying to close out contracts before the end of the fiscal year. The good news is there hasn’t been any drama to report! Its probably safe to say that if I haven’t posted in awhile it means things are going ok! I’ll try to hit the high points from the last two weeks… and there have been some really high points!!

Lucas had his follow up CT scan with the neurosurgeon a little over a week ago. I can’t tell you how nervous I was going to that appointment, I just can’t relax anymore about the shunt, especially since things were left dangling from the last surgery the week of Thanksgiving. Dr. Yaun came in to say hello, and said she was going to look at the films and be right back in… and then she was gone a very long time. I sat there with a pit in my stomach the whole time, coming up with all kinds of scenarios in my head. She finally came in with a huge smile on her face and said, “This CT is his best one EVER!” She was so excited to tell me, and I couldn’t help but cry (as I’m doing right now thinking about it). All good tears! We looked at the scans together and everything looked better than I’ve ever seen it. The left side of the brain looks full and as close to “normal” as it can, and the right side has had a lot more brain expansion. This is the first time ever that all four ventricles are draining properly. Looking back over the last year and a half, Lucas has always been under some kind of pressure. It is kind of ironic because I could clearly see in the pictures that the catheter is in the wrong place and moved way beyond where it should be. But its working, and that is all that matters!

Two days later we saw the neurologist, Dr. Chang (it has been since the summer). Just to remind you again, Dr. Chang was the very, very negative doctor that broke the bad news to us in the NICU of the extent of his injury. She’s the one I used to hate seeing, and now I’m excited to see her! She was blown away again by Lucas. He was animated, smiling, and talking/mimicking in her office. She had a neurology student in with her and she explained to him Lucas’ history and said the words again, “Angie, I could have never guessed how Lucas is sitting in front of me from seeing his MRI last year.” I feel like she is letting on more now just how bad she thought it looked then (just imagine if she had not sensored her words last year, and if she had told us how she really felt). When she pulled up his recent CT scan, she said “This is why he is doing so well, just look at all this brain expansion!” She was very excited. And I’m so proud of him! I was able to get a copy of a few of his CT scans from the radiology department but I haven’t had a chance to load the software to view them yet. If I can get a good picture to share, I will. There was a little disappointment in the visit, she decided to keep him on the seizure meds for another three months. Although she had planned on taking him off in December, she decided since he just had three surgeries in a row, that she didn’t want to interfere with the shunt functioning well by having a seizure if he reacts negatively to coming off of it. I feel confident that he will be fine without the meds because he has been weaning since March of this year. We have never increased his dose and he’s almost doubled in weight. We have a plan in place now to wean him completely off in March 09, marking one year. I’m also eager to get him off the medication so we can give him the best chance at development. Seizure meds are designed to slow the brain down, and there is no official verdict on how the medications impact a baby’s development…but logic tells me that it has to be impacting him in some way.

I think we are back on track with weight gain, we’re trying hard anyway! Back on the medication to make him more hungry, sleep feeding at 11 pm, and he’s finally tolerating adding more Duocal to his solids which ups the calories. I haven’t had him weighed officially in a couple weeks but we can tell he’s filling out. He’s still battling the ear infection, it didn’t clear from the first round of antibiotics so we are back on them. The pediatrician said if he gets another one, he wants us to see ENT about tubes. We are already scheduled to see his ENT on January 5 about getting his tonsils out, so I’m sure we’ll cover all of that. We moved this appointment up because we officially can’t put oxygen on him because of the hazard of the tubing. He hasn’t had it for about two months and you can hear him waking up quite a bit from the obstruction. The pediatrician said that his enlarged tonsils may also be contributing to the whole system and making him more vulnerable for ear infections. Ugh, I long for the day he is completely med-free and that we have all of these things taken care of! I do feel like we are getting some relief little-by-little as he gets older, as all of these procedures and illnesses are connected in some way. Get the tonsils out… cure the apnea and get rid of the oxygen… by eliminating the oxygen need… we can his nose corrected… and hopefully eliminate the ear infections along the way. Get rid of the seizure meds (and we are currently trying to wean him off Prevacid for reflux)… and maybe we’ll hit our goal by the end of next year… med-free!

On the therapy front, all is going well. It’s a bit taxing having four appointments a week, but we are jumping in with both feet with a lot of hope for this method to work. I’ve asked our other PT to stop coming for awhile, and am going to stop OT as well. It’s been a difficult shift for us though… we have always been instructed to basically force him into positions “to make him stronger” – on his stomach and arms, sitting, all 4’s, etc. AB method wants none of that because it develops rigidity that makes it impossible for him to advance in other areas. And our traditional PT & OT want to stretch him like crazy… if his arms or legs are tight—stretch them (no matter how much he complains). This approach may work often, but is not always a successful approach for a brain injured child. AB wants him fluid, and absolutely no stretching or forcing. They feel stretching helps in the moment, but it doesn’t teach the brain to use those particular muscles so that they loosen on their own as the natural progression of a healthy and highly moveable baby. She is focusing on his core, his chest, ribs, abdomen, and back, in an effort to help the brain learn new pathways so that his body can move normally. ABM is completely against forcing kids to be in leg braces, or strapped into a stander, it is all about creating the necessary connections in the brain so that things happen naturally. I use this analogy when comparing the two therapies… traditional PT/OT tend to treat the symptoms (high tone in the muscles), ABM treats the cause (which starts with learning in the brain).

I’ll share something interesting that happened… after the first three weeks of ABM, I stopped stretching Lucas. Our PT hadn’t visited during that time due his surgeries and scheduling conflicts. Typically when I’ve stopped stretching him for any length of time (from surgery or while being away visiting family) we could always tell that he was slightly tighter in his legs and left arm. Melody (PT) picked him up and started stretching his legs and said “oh my, he feels great, his legs are so much looser that I’ve seen them before.” She had forgotten that we started ABM, and actually since then has become a little skeptical after learning how much it contradicts her methodology. I was pretty excited to tell her that I hadn’t done a bit of stretching in all this time… that we had been strictly following ABM. I could go on and on, there is so much to say about this. The most important thing to say, is that we are seeing many changes…one of them being that he is reaching and lunging for things with his body for the first time. It has never occurred to him at all before that he could go after an item or a toy. If it wasn’t sitting directly in front of him, he wouldn’t even try. This has been frustrating, since all babies are motivated through developmental stages by wanting to go after something. Now, if he sees a toy (or a remote control, as it often is), he launches his entire body out to go get it. He doesn’t have the coordination yet or left arm recognition to be able to support himself on one arm to go get it by himself, but at least he is trying with his entire body. I truly believe this has stemmed from the new method and all the attention that has been given to “wake-up” his awareness of the core of his body. He is also much looser in his left arm, it is fisted and pulled up in a rigid position nearly as often (this is one of the strict “stretching” areas that we no longer do). Maybe some of this progress is finally getting the shunt under control and allowing brain expansion… or a combination of the two. We may never know, but as long as we can get him to the next milestone (without drugs and equipment), that is all I care about.

Sorry for another long update, never a lull in activity with him! We are excited to be heading to Ohio for a few days after Christmas with all the kids, and are looking forward to some down-time off of work next week (that’s downtime “if” Bran and I can get our contracts closed before Christmas so we can relax)! I will probably not update until after Christmas unless anything major happens, so I wish everyone a safe and healthy holiday!