Medical Update
Yesterday evening I was finally able to get in touch with Wesley's neurologist to get some followup information from his last appointment. Well, good news is she agrees that doing another MRI is a good idea. Bad news is her reasoning. The whole time with Wesley we've been chasing symptoms trying to find the root cause of his issues. Originally they thought it was his blood, then a metabolic disease, then his liver, an infection, then my blood, and so on. It's the chicken and the egg deal all over again, what is a cause and what's an effect. Well the entire neurology team at Children's looked at his MRI together on their fancy huge screens and all agreed that his bleeding in his brain was a result of lack of oxygen and blood flow. It seems counter-intuitive that lack of blood flow would cause bleeding but apparently that's how it works. So, his stroke was a result of his heart not beating. She also said that the damage to his brain looks to be all over rather than just the areas that had bleeding. The lack of oxygen and blood flow was so severe and so extended, that it has left visible damage to his entire brain.
When the brain is deprived of oxygen and blood, the cells start dying. However, there is a delay between the original brain injury and the actual cell death. Wesley was put on whole body cooling (therapeutic hypothermia) shortly after birth to try and prevent as much cell death as possible. Since then, it's been a waiting game to see how he develops. So far, he keeps making developmental progress but at a distinctly slower pace than a "normal" baby does. So although he's behind, the fact that he's making progress has been encouraging.
However, one thing that has been concerning all along is his head size. Although his head was average size at birth (68th percentile), it had hardly grown since then. Now, at almost 5 months old, his head is still newborn sized. Because of this, his cranial bones have started overlapping because there is not enough brain matter to push them out. When babies suffer brain trauma (lack of oxygen and blood) it is nearly impossible to tell at the time how they will develop because we don't understand the brain enough to know when cells will heal and when they will die. One big clue as to how much brain tissue has healed versus died is their head growth. His neurologist said she was "concerned" that his head has grown so little so she wants to do another MRI to have medical evidence of his brain status so "he can receive as many services as possible." Ugh, so in a nutshell she's saying it looks like his entire brain suffered severe trauma and is not recovering so lets do another MRI to see how bad it is. I wanted another MRI but I was expecting to have to fight for it. Now that I don't, I wish I did because that would mean they thought he was doing well.
Every time we go to therapy appointments, I leave feeling encouraged because the therapists are so good about talking up his achievements and recognizing developmental progress. One of the teachers at the Anchor Center always calls him her "star pupil." However, every time we go to a doctor's appointment (or talk with his doctors) I leave feeling discouraged. I understand that they are trying not to give false hope, but it's so discouraging. I know I need to focus on what he is doing and the progress he is making, but it's so hard to fight those demons of will he ever talk, will he ever walk, will he be able to learn new things, how well will he be able to communicate, etc. It's all a big waiting game. I've realized within the last few years that people have often called me a patient person but that's only partly true. I really do believe God has given me a patience with people that I will put up with a lot and wait for people to understand things. However, I think in order to be patient with people, my ability to be patient with tasks was completely drained. I hate waiting for things to get done, for results to come in, for packages to arrive, etc. I don't mind waiting on a student to understand a math concept but I despise waiting to find out whether or not I got a job. So with Wesley, I can wait and patiently feed him over 30+ minutes every time (although it gets hard sometimes) but waiting to find out how much he will or won't develop is just torturous. I feel like if I just knew what was in store, I could start preparing but not knowing just makes me worry. I don't know that I can handle preparing for the worst and still hoping for the best. I'm not sure I can live in those two realities simultaneously. I just have to take things one day at a time.
Here's a video of Wesley playing his mini-keyboard with his feet. This is one of his favorite "therapy activities" to do.
(Sorry this is a ridiculously long post)
When the brain is deprived of oxygen and blood, the cells start dying. However, there is a delay between the original brain injury and the actual cell death. Wesley was put on whole body cooling (therapeutic hypothermia) shortly after birth to try and prevent as much cell death as possible. Since then, it's been a waiting game to see how he develops. So far, he keeps making developmental progress but at a distinctly slower pace than a "normal" baby does. So although he's behind, the fact that he's making progress has been encouraging.
However, one thing that has been concerning all along is his head size. Although his head was average size at birth (68th percentile), it had hardly grown since then. Now, at almost 5 months old, his head is still newborn sized. Because of this, his cranial bones have started overlapping because there is not enough brain matter to push them out. When babies suffer brain trauma (lack of oxygen and blood) it is nearly impossible to tell at the time how they will develop because we don't understand the brain enough to know when cells will heal and when they will die. One big clue as to how much brain tissue has healed versus died is their head growth. His neurologist said she was "concerned" that his head has grown so little so she wants to do another MRI to have medical evidence of his brain status so "he can receive as many services as possible." Ugh, so in a nutshell she's saying it looks like his entire brain suffered severe trauma and is not recovering so lets do another MRI to see how bad it is. I wanted another MRI but I was expecting to have to fight for it. Now that I don't, I wish I did because that would mean they thought he was doing well.
Every time we go to therapy appointments, I leave feeling encouraged because the therapists are so good about talking up his achievements and recognizing developmental progress. One of the teachers at the Anchor Center always calls him her "star pupil." However, every time we go to a doctor's appointment (or talk with his doctors) I leave feeling discouraged. I understand that they are trying not to give false hope, but it's so discouraging. I know I need to focus on what he is doing and the progress he is making, but it's so hard to fight those demons of will he ever talk, will he ever walk, will he be able to learn new things, how well will he be able to communicate, etc. It's all a big waiting game. I've realized within the last few years that people have often called me a patient person but that's only partly true. I really do believe God has given me a patience with people that I will put up with a lot and wait for people to understand things. However, I think in order to be patient with people, my ability to be patient with tasks was completely drained. I hate waiting for things to get done, for results to come in, for packages to arrive, etc. I don't mind waiting on a student to understand a math concept but I despise waiting to find out whether or not I got a job. So with Wesley, I can wait and patiently feed him over 30+ minutes every time (although it gets hard sometimes) but waiting to find out how much he will or won't develop is just torturous. I feel like if I just knew what was in store, I could start preparing but not knowing just makes me worry. I don't know that I can handle preparing for the worst and still hoping for the best. I'm not sure I can live in those two realities simultaneously. I just have to take things one day at a time.
Here's a video of Wesley playing his mini-keyboard with his feet. This is one of his favorite "therapy activities" to do.
(Sorry this is a ridiculously long post)
Megan! You're not supposed to apologize on your blog! That's the point of writing it anyway, right? So that you can get things off your chest without feeling like you're burdening people with it? Anyway, I just wanted to let you know that I admire you so much for the way you are living your life right now. You are being so honest and loving and a wonderful mother, and I think that is the absolute best way - if not the only way - to get through a trial like this. And if you ever find a way to make your emotions and your thoughts line up with what you know is true in your spirit and in your brain, let me know!!! I sure could use that skill! :)
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