Good Days and Hard Days

Some days and moments are harder than others. Paxton is continuing to work hard and show progress, but it’s not always happening fast enough for him. He really is the most patient person I’ve ever known, but his speech frustrates him. He’s trying so hard and we can’t always decipher what he’s trying to communicate. It’s heartbreaking for us when we can’t guess what he’s saying. The speech app helps, but doesn’t always have what he’s looking for. His spelling is a little garbled so he can’t just type what he’s trying to say.

Last night, he woke up about midnight with a terrible migraine. He was crying so hard I got pretty scared. After 90 minutes and administering every line of defense we have, we bundled up and started to head to the ER. Luckily, after about 10 minutes of driving the pain broke. We decided to turn around and try to get some sleep. He was able to sleep, but my anxiety kept me up. I just wish we had some answers. Hopefully in February we can get a better understanding of what happened.

Today we are taking it easy. I kept him home from school to let him sleep and give his brain some rest. Bray tried to stay home too, but the mean mom I am made him go. 😂

We are very thankful for Paxton’s progression and are staying positive. He works so hard every day. He is such an inspiration. We are adjusting to our new normal. Thanks for all the love.

Janell

Comments

Denver

Yesterday Pax had his MRI and angiogram. They found a small AVM that caused the bleed. This abnormal vessel will need to be removed. It happens to lie right on the pronunciation speech center of his brain. There is a risk of him have temporary or permanent set backs in his speech with the removal. The neurosurgeon is consulting with other specialists to determine the best way to remove it. The vascular neurosurgeon said it’s close to the surface, which is good. We aren’t sure when the surgery will take place, but it doesn’t sound like this trip. I have a mixture of emotions. On one hand, I’m glad we know the cause and it can be fixed, but the risks are scary. Of course we’ve gotten ice cream since we’ve been here. He was thrilled to see they had Cookie Butter this week. We have an appointment with the rehab doctor today so I’m sure we will be getting more ice cream today. Thanks for keeping us in your thoughts and for all the love and prayers. I will update the blog when I know mo...

Quick Update

He’s done. Took about 10.5 hours. It was MUCH more complicated than anticipated. They say he's doing good. We are headed up to the icu now to see him. Thanks for all the support. I will update more tomorrow.

Christmas Miracles

We have some great news…Paxton started walking on his own! He literally went to PT in the morning being helped by his therapists and a hour later came walking back without assistance. He is literally blowing everyone away. So many people have told me that he is the hardest worker they’ve ever had. We are so incredibly proud of him. We kept the secret from Brandon and when he got here tonight, Paxton got up from his wheelchair and walked to give him a hug. Lots of happy tears were shed. He fatigues really quick and still has some work to do to perfect his stride, but he’s crushing it! I tried to upload the videos but I can’t get them to work. I will keep trying. My favorite response is from Eva and Nellie. They sent an awesome video in response, but I can’t get it to upload either. Grrr Bray and Pax were so excited to see each other. They hugged and were so sweet to one another. Bray and I cried as soon as we saw each other. I have a feeling these next few days will go by much too ...

Paxton's Progress

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