Thursday, May 17, 2018

Super sweet

No nurse again today. This should be the last day as we have found a nurse that seems to be a good fit who will be picking up this weekend and then officially starting next week. Reagan had a sleepy day yesterday. I think it was actually a "bad day" as well, because when she was awake she was very fussy. Thankfully she slept the entire day and woke up this morning super sweet! She slept in a little but woke up just in time for PT. Then she had OT followed by school and she did well with both (although she did fall asleep at the end of school). Sweet girl. It's been a great day to snuggle with my girl and look into those big giant eyes. She is SO PRECIOUS. She's been very alert, making great eye contact, giving me smiles, and pretty easy going with the hands. I'm glad we got to have a mommy and me day!

Tuesday, May 15, 2018

Pretty good week

Last week was a pretty good week. Reagan had some good days, Ryan had another (small) modeling photoshoot and a great week at school, and Friday we had our stairlift installed! Reagan has been on an antibiotic all week for her sinus infection and while I definitely think it's helped, it has also caused major gastrointestinal upset for my girl. We are SO glad to be done with that medicine. She's also gone from being very relaxed last week, to being quite tense in her body over the weekend and this week. She's been pretty restless at night and just not sleeping well. I was just thinking the other day it had been a long time since we had seen a seizure, then pow she had one over the weekend. Monday we had a neurologist appt in Houston. We discussed increasing her Banzel to see if it helps (the levels of it in her bloodstream are VERY low since it's the same dose she's been on since 3)! So we'll see. Today she started losing tone and by the afternoon/night she was full on nauseous! Ugh. Poor girl. Thankfully she finally dozed off on her own so I moved her to her bed and raised it up a lot at the head and she seems to be sleeping pretty soundly right this moment. I'm hoping she's able to sleep the night through and kick this nausea to the curb!

Thank God a good Samaritan came to our rescue with a stroller to
 borrow for Reagan's Drs appt in Houston! We forgot hers at home!!

Sunday, May 6, 2018

We're here!

We're still here! Not a lot going on, just the busyness of everyday life. Reagan has been good, well, except for a stubborn sinus infection that we just now got antibiotics to kick. The runny nose comes and goes, but the fact that it was still thick and green finally motivated us to get her in on Friday (and the fact that the drainage was making her nauseous). We've all been battling some sinus issues, hard to say if it's a cold or just allergies, hoping we're done with that. Reagan had a good day yesterday. She was so calm and content. I couldn't stand the cuteness...I had to take some pics of her! Such a darling girl. She was super still and laid back all day, however that changed as bed time rolled around. She was getting increasingly tense, so I picked her up and held her. She calmed down and eventually fell asleep. Unfortunately she woke the second Mike tried to take her up to bed. She just got more and more upset. It looked a lot like a bad day, so we were not super hopeful on her sleeping last night or waking up this morning OK. She surprised us though, not only did she sleep the whole night through, she slept the ENTIRE day. We were really expecting a bad day today, so I have no clue what to expect of tomorrow. I'm really hoping she slept off any bad day and will wake up tomorrow feeling good.