Simon has been sleeping in his toddler bed ever since I redid his room this past weekend. His afternoon naps take forever for him to settle down. Doesn't help that Isabella is home from school and tires to be the mom and put him to bed herself. Nights are pretty good. Last night he only woke up once and just babbled while sitting up in bed. I told him to lay back down and he was back asleep right away.
I went with Pablo to his appointment at the chronic pain clinic this morning and I'm glad I went. The doctor we saw was just awesome. Irish and funny and down to earth and didn't use big medical terms that I wouldn't remember. He told us that there was no abnormalities in the EEG that Pablo had done recently. YAY! We're very happy about this because Pablo had some 'strange' things happen to him a few times lately that we thought might have been seizures. The EEG showed no seizure activity. This doctor wants Pablo to do exercises everyday for about 20 minutes to start to build up his energy levels. Fatigue is a big thing that drives Pablo crazy and the doctor said that after the 2 months of radiation treatments that Pablo had on his brain, it could take up to 12 months to 'get back to normal' and get over all the fatigue. The doctor was very willing to help Pablo get long term disability. He believes that Pablo just needs to work on being able to function day to day - expecting to get well enough to work full-time is an unrealistic goal for the near future. He was shocked that we've managed so well over the last 9 months while raising a two and four year old. This made us feel
really good.
(I might have written about this before but I can't remember) I've noticed a big change in Pablo the last couple of weeks. He seems to have had more good days than bad and it used to be 1 good day for every 5 or 6 bad days. This change had happened since he started taking the Vitamin B6. This vitamin helps to fight against fatigue. AND IT SEEMS TO BE WORKING. AMEN.
Ongoing issues with Pablo that require more medical appointments:
- Pablo has really bad vision in his left eye. He has an appointment with an opthamologist in February.
- Pablo has issues with his left ear (he feels like there is water in it all the time). Waiting for an appointment with an ear/nose and throat specialist.
- Pablo's sleeping patterns/habits are the pits. He is going to be seen by a sleep psychologist or by a sleep clinic. Again. (He already spent the night at a sleep clinic in July and heard nothing back from them)
- Pablo has an appointment with his urologist in February regarding his peeing issues.
- Pablo has a follow-up appointment with the chronic pain clinic in February.
- Pablo's short term memory is pretty bad. Not sure what can be done to help that...
- February is going to be a busy month and my parents are gone the whole month to Mexico (SO jealous).