Skip to main content

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

Post a Comment

Popular posts from this blog

One Day at Time

 Every time I get overwhelmed I hear my grandma telling me to take it one day at a time. I miss her so much, but take comfort in knowing exactly what her advice would be because she helped me through most of the tough moments in my life. Pax is still progressing really well. He surprises us every day with a new movements in his hands or leg. He continues to be positive and work hard. He loves being back at school. We are just waiting for all of his accommodations to be established so I can leave his classroom and allow him to be there without me. We still haven’t found a speech therapist who can accommodate our scheduling needs of multiple sessions a week and someone who has some experience with stroke patients. The adult SLPs are experienced in stroke recovery but none will accept a 9 year old. The pediatric SLPs have waitlists and most don’t have stroke experience. We are looking at some options in Bozeman right now. We are in a critical time for regaining his speech and it’s fru...
Post a Comment
Read more

Feeling Better

 Pax is doing much better today. His silly personality is back. ❤️ He’s still a little swollen but much better. His jaw hurts a little less so he’s eating more. He crushed it at PT yesterday, and can’t wait to go back to the rehab gym later today. His angiogram is first thing tomorrow morning. He hates being sedated and can’t get up and move for 4 hours after the procedure. They will keep us overnight tomorrow for monitoring, and if all goes well he will be discharged Thursday. We had an appointment with the Acquired Brain Injury Clinic on March 24th and they were able to move it to this Thursday. This is a huge relief, the flights are exhausting and expensive. I don’t think we have to come back for 3 months…wahoo! He’s seriously so brave, strong, and had such a positive attitude. His attitude is the only thing that’s kept me so positive. I’m beyond proud of him and am striving to be more like him. Thank you all so much for all the support. We are so grateful for each and every per...
Post a Comment
Read more

Long Overdue Update

 I'm not sure if anyone even checks this anymore since I kind of stopped doing updates. I apologize for the gap in time. To be honest, I've been struggling with some depression over Milton's death and PTSD about Paxton. I am working on both of these and hoping to start feeling better. Enough about me. Paxton is doing AMAZING! He is done with PT. He crushed all his goals and they said there wasn't much more they could do for him. He is still in OT 1x week, mostly working on fine motor skills with his right hand. He currently does any writing or drawing with both hands. He continues with speech therapy twice a week. Speech is still his biggest deficit, but he has come so far. He struggles with bigger words or saying longer sentences. He communicates great and everyone knows what he is saying.  School is going great. They just completed state-wide testing and he surpassed all the goals that were set at the beginning of the year before his stroke. We are all so incredibly p...
Post a Comment
Read more