Bee: Carrier of Wisdom, delicate physique

 Evey's got sass! She has become more and more interested in becoming independent. She knows what she wants and she will keep getting your attention until you give it to her. Her communication device is frozen so she hasn't been able to use it for a few days. The first available time to help me get it fixed is Monday. (That's pretty sad that we have to wait that long to get it fixed when communication is something we do everyday!) Anyway, she tries her best to communicate what she wants and we are asking or offering her things to see what she wants. To the outsiders, it might sound like whining but to us, it's her communicating and thankfully we have figured out what each whine means and we have 10 times more patience with her to make sure she gets what she needs.  She had a great day today and got to spend most of the day outside with the nurse! We got home and decided to eat dinner at Ty's preschool church. At the end of the month, the church offers a free meal fo...

 Today was special! Evey did not have a nurse today so Joshua and I took turns staying at home with her. I stay with her in the morning so that I could take her to her PT evaluation and Joshua took the afternoon. Evey was so happy to have one on one time with both of us without the others at home.  Evey LOVED her new PT and the room that she will be learning all of her skills. She was most excited about the full wall mirror so that she could see herself move and talk. After we got home she was super hungry so I gave her a snack and then we played and folded laundry. She is practicing more and more how to put puzzle pieces back into their spot. She is really determined. After she played for a while she was hungry again so we ate an early lunch. She gobbled down scrambled eggs and cut up pork chops.  When Joshua got home, he put her down for a nap, fed her a snack and took her outside. This weather we have this week is so nice and I am excited to get home every night to spe...

 Violets 1. Evey was super playful and laughed a lot! 2. She took good naps and slept well at night! 3. She ate really well and was able to grab her cup while sitting at the table! 4. She is beginning to like brushing her teeth more and more! Weeds 1. Her constipation is back, so we are pushing more prune juice and water. 2. The weekend is over and it's back to learning and growing brains! PT and OT evaluations are this week and then we will be on our way to becoming more independent! Be like a bee-hardworking, wise and delicate!

 I don't think we ever got out of weekend mode. With Monday, Wednesday and Thursday out of school we were able to have slower mornings and more family time. Evey has gotten spoiled with us being around so tomorrow might be a little rough for her. Thankfully she has her old nurse back that will love on her while we are working.  Evey will get reevaluated for speech tomorrow with her old speech pathologist. I am excited to see what she recommends because Evey has been more vocal the last week. We can definitely tell she is trying hard to communicate with us. She even joins in on the kids arguments and sometimes gets the last word (sound).  I was able to talk to the OT who will be evaluating her in person next week. I am hoping that the first impression I got will be the right impression after I see her evaluate Evey. I need her to understand how important it is for Evey to get intensive OT therapy.  Next week will be crazy with all the evaluations, but once that is don...

  Evey woke up this morning at 1am ready to party.  I tried to see if she would go back to sleep on her own but she kept getting louder and louder so I went into her room, picked her up and rocked her for 45 minutes. She was not going back to sleep. I decided to lay her back down in her crib and just wait. Well, she sat right back up and sang to herself doing the hand motions and everything. I should have recorded it, but I was so tired. It was pretty entertaining though.  She had a great weekend recouping from her nasty virus. She does have a lingering cough so we are hopeful that will go away soon. Maybe with this snow coming in, it will help dry it out. Her evaluations for her therapies are starting to get scheduled. We have her speech scheduled for this Friday, her PT scheduled for Monday and her OT, TBD. OT did call me, but they wanted to do a virtual evaluation. I politely said no and told them that she is severely behind and that someone needs to come in person to ...

  Evey was grumpy all day. Evey woke up happy after taking a solid poop and was able to eat a waffle and a small powdered donut. When I left, she was not in a good mood. When she is like that, sometimes I just want to stay with her. The nurse was able to get her down for a morning nap but she messaged me saying that she had been crying on and off all day and just wanted to be held.  When I got home, I snuggled her for a while. We said bye to the nurse and I decided to do some bicycle exercises to help get the gas out. She giggled and giggled. The bicycle exercises turned into standing against the couch to me tossing her on the couch and her giggling some more. She loves to be tossed in the air. I was simultaneously teaching her how to get down from the couch the safe way without her knowing it.  She ate and ate and ate at dinner. I really think she was grumpy because she was hungry. I am going to make sure she has more than she usually gets tomorrow so that she isn't grum...

 Today was a good day! Evey woke up HUNGRY! She ate her regular waffle and still wanted more so I gave her another waffle to enjoy. She wasn't into drinking her water as much today- I think she misses her milk. Hopefully by Thursday we can slowly reintroduce it back into her diet.  She did a lot of independent play with the nurse so she was happy when we came home and we played with her. She did communicate snack on her device throughout the day so she is learning how to use it. It really helps to know what she wants. I just need to add waffle to her choices so that she can get really good at it.  I made chicken casserole for dinner and Evey LOVED it. After we ate dinner we facetimed PatPat and Joe Joe so that they could see the kids opening their Valentine's gifts from them. They all enjoyed the goodies and Evey enjoyed talking on the phone. She now gets mad when she can't see Pat Pat or Joe Joe on the phone and the others want to be in the picture. She has to have them...

  As I was waiting for the doctor today I got a call. Evey had a few rounds of diarrhea overnight and I called in the morning to get an appointment. A number with a  919 area code popped up on my phone so I answered. "Hello?"  "Hello, I am trying to reach Mandy Miller, Evey Miller's mother."  "Yes, this is she."  "Hi, I am the attorney general for Medicaid and the CAP-C program has reversed their decision. The next step is an assessment. I am going to go ahead and cancel the court date with the judge, if  you agree with their reversal decision."  "Yes, I agree."  We had just submitted the paperwork on Friday and they called me today! That was quick! Finally something going in the right direction and I didn't really need to put forth much effort! The fact that they reversed it so quickly makes me think that they are trying to smooth over the fact that it took them so long to get back with me on a decision when I applied in March ...

  From Wednesday until today we cleaned our house top to bottom. Once we figured out Evey had some sort of stomach bug, we also found out that Jonah had strep. Joshua and Laney stayed home from school on Friday to recover and Joshua was able to rest and get a head start on washing all the sheets. Since it was a nice weekend we opened the windows to let in the fresh air.  Evey did great on Friday night and Saturday. It seemed like she was 95% better. Saturday night hit and she threw up again and then on Sunday morning had a massive blow out-diarrhea. We are hoping that it is the end of the stomach bug and she will begin to have more normal BMs soon.  Friday afternoon Friday night Saturday Morning We were able to go on a family walk this afternoon and everyone had fun getting out in the sun. We stayed outside and played on the playset and formed a plan on what yard work we are going to get done next weekend since we have a three day weekend.  It was so nice to see Evey...

  Evey woke up with rotten egg smelling diarrhea.  I got her changed and offered her something to eat and drink and she refused all of it. The nurse hadn't arrived by 645 so I checked in and she said no one reached out to let her know that she needed to come. Usually they are good at following up to let the nurse know about discharge and all that, but it got slipped through the crack. I let her know that next time I would text her updating her of the situation. Evey had another round of diarrhea so I changed her and got her loaded in the car with Ty to take him to childcare.  She enjoyed being out in the fresh cold air and Ty enjoyed showing her off to all the adults in the building. She even cried a little when I had to put her in the car and Ty left. I think she thought she was going to get to stay and play. Once we got home, all she wanted was for me to hold her. I went ahead and gave her pedialyte and cuddled her for a bit. She ended up having another round of diarrhe...

  Evey woke up hungry and still tired.  Her hands and feet were purple and it concerned me because usually they go back to a pinkish color after she wakes up and starts eating. This morning they didn't and once the nurse came,  I mentioned it to her and she said it was the same as yesterday. She was not in the happiest mood when I left to take Ty to childcare, but I was able to get her to calm down by watching a little Ms Rachel. The nurse was able to take her vitals.  I checked on her around 10:15 to see if she was doing ok and I got a long message back about her O2 dropping to 78% and then back up to 94%. It's a finger O2 device that you get from amazon and it picks up pretty well now that she is older. Her hands and feet were still purple and she was lethargic. She had just had a large explosive diarrhea before I checked in as well. The nurse thought it was from her being dehydrated but she had been giving her lots of liquids.  I contacted her cardiologist an...

  The stomach bug came swiftly through our house. Thankfully only Evey and I have gotten it, but it took me and Evey out yesterday and today. I made it to work, but I was super tired and had to move slow. In hindsight, I should have stayed home to sleep it off, but with Joshua working the middle school game, I had to make sure the kids had a ride home. Evey is still getting over it and was super tired today and did not want to eat or drink. I had to give everything  through the gtube. Hopefully tomorrow she will want to eat.  This weekend before all the sickness hit us, we had fun! We were able to go to a new antique shop and look around. Laney found some cute earrings and a cup. I found a cute chair for our dining room, the boys found a sticker for their water bottles and Joshua found a piece of history. The boys got a haircut and Evey was able to relax. We tried a new trick to help her start using her pincer grasp and she loved it! She has definitely learned how to hold...