Thursday, March 31, 2016

Busy but still calm

Another leaky diaper this morning, but nothing huge, just leaky. Reagan slept well again last night and woke up super calm and sweet again this morning. She had a busy day of therapies. This morning she was supposed to get her new stander, but when the DME guy showed up we found out it was missing the brackets for the hip supports AND he forgot that we needed it upstairs! So we all just agreed it would be best to wait until the brackets came in next week and that way he could bring someone with him to help get that monstrosity up the stairs! So then my girl had back to back to back therapies...PT, OT, and school...and she did great with everything. And after school, we threw in a bath for good measure (she did have the super red hands again in the bath tub)! Talk about a busy afternoon! Tonight I went to a bunco night with some ladies in our neighborhood and Mike stayed home with the kids. Reagan was a dream, so laid back and easy going, it was a piece of cake! By the time I got home, she was in Mike's arms fast asleep! Sweet girl. Hoping for some more good days for my girl!


Wednesday, March 30, 2016

Calm girl

Reagan slept well again last night but woke up again this morning soaked. Another day of stripping down her bed and washing all the sheets. It's been another serious but calm day. She's been very laid back and still. Big, wide eyes. She had speech this morning and did very well with that. I knew she would rock the eyegaze with those big eyes! She didn't have anything else until school this afternoon. Well, not really school, but OT and speech from the school came by (without the teacher). She did well with that too, although she wasn't super into anything today really. After school, she watched Inside Out (she got it for her birthday) and her nurse said she was super interested in it, attentively watching the entire movie! Tonight she's been pretty groggy. Super still and sweet. She eventually dozed off in her chair and I moved her to a pillow on the floor. So adorable. Still not sure what direction she's headed. She seems to have a little congestion today, doing a lot of mouth breathing and ending up with super dry lips. We did get the call this morning saying that her urine sample did grow E.coli again (so we started her on Cefdinir). Another UTI. Ugh. They are referring us to urology now. No idea why this keeps happening. Poor girl.

Tuesday, March 29, 2016

Still serious but good

I went in and checked on Reagan this morning and again she had leaked through her diaper with a big stinky pee! Poor thing, she was still asleep but wet, so we had to change her and wake her up. She's actually had a pretty good day today. She's been on the serious side again...no smiles and a little sleepy but good. She had PT this morning and wasn't loving the stretches (as she was especially tight today). She missed OT this afternoon because she was OUT cold. She eventually woke back up and was a sweet girl the rest of the night. I laid her on the floor to roll around and she ended up dozing back off. Such a precious girl. Still waiting on the results of her urine culture, but with the stinky pees she's been having, we're pretty sure it's another UTI. We should get the results tomorrow.

Monday, March 28, 2016

Serious and suspected UTI

So when Reagan woke up this morning crying at 6:30am...I was worried. But I went in her room to find her completely upside down in her bed and tangled up in her tube! I think maybe she had just been laying there quietly for a while and finally had to get riled up to get my attention! Well it worked! I changed her (she was soaked) and moved her to her therapy room, where she was much more calm and content. She's been more on the serious side today...no smiles but good. She did end up dozing back off just in time to miss speech. She was awake for OT though, which she desperately needed. She's been pretty crunchy and tense so she really needed some stretching today. I did notice that she wasn't much of a fan of me stretching her feet either. Another thing I noticed was that she was holding her pees...she wouldn't go for a long time and then have a huge one (that was a tad bit on the stinky side). I decided to put some cotton balls in her diaper so I could test her urine. It came back with high leukocytes and a high pH...both a flag for a UTI. I called the drs office and they wanted to see her right away. My stepmother came over to watch Ryan (as we are still without a nurse on Mondays) and I took Reagan to the dr. They cathed her to get a urine sample, the first nurse couldn't get it in so the second one had to try (which of course when they finally got it in Reagan peed around the cath and only left a drop or two in the tube...thankfully I had warned the nurses so they caught a good amount in a cup) and they ended up with the same results I had gotten. These results aren't conclusive for a UTI (the last time she also had high nitrites which she didn't have this time), so they are sending it off for culture. Meanwhile, the dr is giving us a prescription for antibiotics and the option of starting it now, waiting to see how she's feeling tomorrow, or just waiting until Wed when we get the results. The hard thing is, even with a UTI, Reagan rarely shows any signs of it (irritability, fever, etc...), so it's hard to know what to do! I think we're going to wait for now. Hopefully they get back to us quickly with the results...I really don't want her to suffer unnecessarily. Hoping my girl cheers up and has a good week this week.


Sunday, March 27, 2016

Happy Easter!

Today was another good day for my girl. My girl slept in this morning but woke around 11am, happy and sweet! We were able to get some super cute pictures with Grandma (aka The Easter Bunny) and the kiddos. I bought these adorable outfits for them last year and was excited for Easter to finally roll around so they could wear them! The pictures turned out so cute! Can't beat having your own personal Easter Bunny! Mike and Ryan went over to his sister's house this afternoon, but I kept Reagan home since there were some sick kiddos, I just didn't want to take any chances of her picking up something. I wasn't a fan of spending Easter at home, but I felt like we just finally got her healthy again! Ryan had a good time playing with his cousins and Reagan got in some good mommy time. She kicked around on the floor for a while, but the second I picked her up, she immediately fell asleep in my arms. Sweet girl. Tonight we went out in our culdesac and played with some confetti eggs our neighbors handed out! Both kiddos had a good time! So glad she held out and had a wonderful weekend. Not sure where she's headed (she did have really cold hands/feet today), but I sure hope these good days continue!




I love the back on this dress!







Saturday, March 26, 2016

Another spectacular birthday party

Reagan was SO good today. Today was the day of the joint birthday party for her and her brother. I've been holding my breath all week, not knowing how she would be when this day rolled around, and she's been perfect! This morning Chloe and her family came over (Chloe also has mitochondrial disease). They had Easter plans so they couldn't make it later in the day, but it turned out to be a blessing because we got to see them before all of the hustle and bustle started. There was a tiny moment of sensitivity when we were all talking a little too loudly around Reagan, and she was just letting us know by getting vocal and more tense, but she settled down and was even great in the bounce house! Chloe loved the bounce house! So cute! I did have to visit and run because I still had a lot of prep work to do before the party, but our nurse sat in the bounce house so they could spend some more time in there. The party started at 2 and in true party fashion, I was still laying things out when people started showing up. Thankfully I had gotten dressed and put on makeup 30min earlier! The bounce house was also a good distraction. We had a great turn out this year, lots of friends, family, and neighbors which made me very happy! Everyone had a great time! Ryan bounced in the bounce house almost nonstop! The only hiccup was during the happy birthday song, Reagan got over excited and was close to tears by the end (this is a common occurrence), but she recovered quickly and was fine afterward. Tonight Reagan was loving laying on the floor looking up at the lights on the ceiling. It was even prettier in the dark! Thank you so much for keeping my girl in your prayers! It was another wonderful birthday party with an even more wonderful girl!


































Friday, March 25, 2016

Even better

Reagan has been super sweet today, but sleep was not so good last night (for any of us). My mom and I were decorating cookies for the birthday party until 3am. Then just as I went upstairs to get ready for bed, Reagan woke up and was very vocal. She wasn't going to go back to sleep so I moved her to her chair and got her settled and finally crawled into bed around 3:45am. I'm fairly certain my girl never went back to sleep. She was a sweetie though, very vocal and very talkative, but less kooky than yesterday (that's a good thing). I'm not sure where she's headed but I really hope these good days continue at least through tomorrow so she's happy for her party!! Only one therapy today, speech, and she was a bit tired for it. I can feel her pain. While my girl took it easy today, my mom and I scrambled to get everything done for the party. My mom worked on the cake a lot today. This is her first shaped cake she's done...the cake itself is actually (in the shape of) nemo. Usually she does round stacked cakes that are decorated with fondant. This one was a little more tricky...although working with fondant is always a bit tricky. The decorations are really coming along and it looks like were living in an aquarium! Today the bounce house was delivered (it was an ocean themed bounce house), but it was filthy and we ended up having to call them back and ask if they could bring another one! Unfortunately, they didn't have any more underwater themed ones, so we just got a standard bounce house. Ryan didn't seem to mind though and we even got Reagan out in in for a bit tonight and she seemed to enjoy it as well! Hoping for a good turnout tomorrow and even more importantly a happy girl!