Tuesday, July 31, 2012
Monday, July 30, 2012
Sunday, July 29, 2012
Saturday, July 28, 2012
Friday, July 27, 2012
Thursday, July 26, 2012
Wednesday, July 25, 2012
Tuesday, July 24, 2012
Monday, July 23, 2012
Swim pictures from yesterday...
Sunday, July 22, 2012
Saturday, July 21, 2012
Friday, July 20, 2012
Thursday, July 19, 2012
Wednesday, July 18, 2012
I just typed up a huge post and stupid blogger deleted the whole thing!!! I'm so mad!
Reagan had a good day today. She slept well last night and woke up smiley! She was a little groggy in the morning and took a long 2hr nap, but then woke up happy and was alert the rest of the day. Tonight she was sounding a little gunky in the throat (like she needed to swallow something down), so I was a little worried she might get nauseous. I kept a close eye on her but she was getting sleepy, so we put her to bed. I heard her cough over the montior, so I ran into her room and she was throwing up! It was all down her neck and in her hair...poor girl!! She was still super sleepy though...she didn't even wake while we were changing her shirt! Please keep her in your prayers!
**Update-Reagan slept well last night but woke up this morning with a temp of 103!!! (and it's not wanting to come down) She's very lethargic...definitely sick! Poor thing! I don't remember the last time she got sick! I'm very nervous! Please keep her in your prayers!**
Tuesday, July 17, 2012
Reagan slept well last night and woke up happy again this morning. She was in a much better mood today (and slept in til 10:15am). She was no longer on edge and she seemed more relaxed (even her heartrate was down from yesterday). She had a good day and did well for her therapies. Then tonight we went and had dinner at a friend's house (we rarely get out and do anything so this was a treat) and Reagan was as good as gold (I wish I could say the same for her brother)! So all in all, it's been a good day. I'm hoping and praying for more!
Impossible to get a picture of this girl...she was moving, moving, moving!
Monday, July 16, 2012
Sunday, July 15, 2012
Ignore the goofy face...this was the best shot of her hair!
Saturday, July 14, 2012
Reagan slept surprisingly well last night. I think she was up a little, but not nearly what I expected. This morning she woke and all was good. She was a little tense and had some crazy laughs but overall she's been OK. Another fairly good day for my girl! Still no good pics of her hair! She's not holding her head up very well and I just can't seem to get a decent pic! It's pretty much the same as always, I had her keep it long but just trim it up a little. I was going for a month or two post haircut look. She's got a photoshoot coming up in the next week or two and I didn't want anything too short! Today Mike and I started on a juice fast. We were only going to do it for 2-3 days and we've been drinking veg/fruit smoothies all week, so we thought we were ready. I'm afraid Mike didn't make it. He got a HUGE migraine this afternoon and then was throwing up tonight. He's done. He nearly coughed up a lung! I'm still doing it. We watched Fat, Sick, and Nearly Dead and it was pretty motivating (and Reagan's feeding therapist has been juicing and telling me about it). I can't do a full on juice fast because I'm breastfeeding, but I've been drinking only juice with some protein powder added to it (I make all the "juice" in our vitamix blender). So anyway, that's been our excitement today!
Friday, July 13, 2012
Thursday, July 12, 2012
Reagan got a decent amount of sleep last night but she was a little restless. She fell asleep around 11:30pm but then woke at 1:30am crying. Her night nurse picked her up and immediately she fell back to sleep, but the second she tried to lay her down, she woke back up again (not upset, just awake). Over and over. Eventually she was able to lay her down in the therapy room and she stayed asleep. She woke up this morning right around 8am...this time she woke happy! She's been a super good girl again today. Very smiley, very easy going. Which is good because we had yet another new nurse today. This morning Ryan had his 4 month baby check up. He's 98% percentile in height, weight, and head circumference!!! I told you he was HUGE! He's 19lbs 10oz, 27.5in long, and 18in head circumference. Big boy, big boy. Reagan had vision therapy/OT this morning, followed by PT. Then this afternoon we took her in to see her dentist. All looks good. He's happy with her teeth, no sign of cavities, gums look good, a little tartar on her back molars but that's common with tube fed kids and it's not enough to warrant cleaning just yet (we'll avoid anesthesia as long as we can)! Reagan was a trooper with him jamming that mirror in her mouth! I was afraid she might gag, but she was great! She really has been a good girl today! A few crazy laughs tonight, but overall she's still doing great! Thank you for your prayers for our girl!
Here's the second video of Ryan...he's surrounded by pillows but sitting up pretty well on his own! (that's grandma talking to him)
Wednesday, July 11, 2012
Reagan slept well last night and then woke this morning right around 8am. She was a little groggy off and on throughout the day, but overall she's been good. Not so much smiley this morning, but more so as the day has gone on! Thank God everyone behaved themselves because we didn't have a nurse today and I was living in fear of her being on edge and her brother setting her off! Hopefully we have someone here tomorrow! Ryan is supposed to go in for his 4 month follow up and Reagan has a dentist appt! Busy, busy!
Here is the video I promised of Ryan...I have one more of him sitting that I will post tomorrow! Enjoy!
Tuesday, July 10, 2012
Reagan slept well last night...and she continued sleeping this morning! Finally around 11am she started moving around, so Grandma went in and started talking to her. She woke up and immediately her occupational therapist showed up. She worked with her for a while and then she had a small break before her summer school teacher got here. He worked with her for about 40min and then she fell fast asleep. She was OUT! It's looking like this is her sleepy day. She's slept all afternoon! She did finally wake up around 8pm (and wasn't too happy)...she stayed awake til around 10 and then was back out again. What's strange is that she's still having these sleepy days (where she sleeps almost an entire day) but it's not like she's having bad days or not sleeping before them. We used to think that she had these sleepy days in order to recover from bad days or days of no sleep, but apparently not. I guess her body just needs them, no matter what. Not surprising for mitochondrial disease...just surprising for us, I guess. Although lately everything is a little out of whack for us (but in a good way). No bad days is a great thing. I don't know how long it will continue, but we're enjoying it while we can! Ryan, on the other hand, has been quite the handful! I think he's teething (lots of spit, biting on everything, red cheeks, very fussy & restless) and he's driving me nuts!! He is cute though! I have two really adorable videos I want to show everyone but for now they are not wanting to upload to blogger! I'll have to work on it! In my free time (right)...no nurse again tomorrow! Pray for a good day for everyone!!
Monday, July 9, 2012
Sunday, July 8, 2012
Reagan has been a great girl today. I think she slept last night but she was awake when I got up, so who knows! She was a happy smiley girl, so this was one happy mommy!!! Reagan has been darling and precious all day today. Very alert, very responsive. Grandma was certainly pleased to see her doing so well. It was a bit stormy today, so no swimming but hopefully we'll get her in the pool sometime tomorrow. Still feeding her a couple of times a day, not a lot (about 1/3 of the container), but she seems to enjoy it! Loving these good days for my girl!!! I'm hoping for a good week for her this week!
Sitting up tall in her Childrite chair!
It was seriously impossible to get a good picture of these two...Reagan is fuzzy, Ryan looks like a deer in the headlights!!
Saturday, July 7, 2012
Friday, July 6, 2012
Thursday, July 5, 2012
Wednesday, July 4, 2012
Brother watching TV!