Emmy seems to be doing better today. She is not nearly as uncomfortable. She slept from yesterday around 4:30 pm until 5:00 am this morning. She fell back asleep at 10:00 am and slept until 2 pm. She has been up since then so she should sleep good tonight. She is really groggy and mumbles a lot when she talks which makes it difficult to understand her. She gets so frustrated with us when we don’t know what she is saying. The antibiotic must be helping. She asked to go outside this evening. We took her for a walk around the yard in her wheelchair and then she was ready to go back in. It was brief, but at least she got out of bed and outside to enjoy the beautiful weather. She enjoyed feeding the fish in the water garden. When we went back inside, she wanted to sit on the couch. This is the first time she has been out her of bed (except for baths) since last Friday. Now we just need to get her eating a little more so she can get some strength back. She is so tired and weak. Good thing she has a nice reserve to last her until she is ready to eat. She has lost weight, but she still has some chub to get her through. Thank you again for continued prayers.
Emmy finally fell asleep at 4:30 this afternoon and is sleeping comfortably. Hospice was here for a visit today. They flushed her port and did a straight catheter to get a urine sample. The lab results indicated Emmy has a UTI. Bless her little heart. It is no wonder she has been so uncomfortable and unable to sleep. She is now on antibiotics so hopefully that will make her more comfortable.
She has been itching and scratching non stop the past couple of days so we have also given her Benadryl. Between the Benadryl, the rest of her medications, lack of sleep and her recent discomfort, I am guessing that Emmy will sleep until tomorrow morning. Tonight should be a good night for all of us to get some rest. Hopefully she will wake feeling a little better. Thank you again to everyone for continued prayers.
It has been a pretty rough day today. Emmy woke at 4:30 am very restless, and complaining of headaches and tummy aches. By 7:15 am she was back asleep to rest. She woke back up at 11:45. Her entire day has been extremely restless. She just can’t seem to get comfortable. She is very fidgety, constantly moving, itching all over, reaching for something, asking for one thing to change her mind to another. Nothing seems to make her content. She is fighting sleep tonight. She can’t seem to settle. She says she doesn’t want to fall asleep. I rocked her in the rocking chair for an hour and a half before she finally settled to sleep. I put her back in her bed and she is starting to become restless again. She has been awake since 11:45 am. I am guessing that once she finally falls asleep, she will sleep for awhile. It looks like it could be a long night. Thank you for continued prayers. I am praying that she finds peace and comfort so that she can get some rest.
This is from our friend. She’s a priest and prays for Emmy and family.
What a precious testimony of God’s grace and presence with Emmy and the love of her family. In our extremity God is present and active in so many ways. May Emmy and her family know and experience the love of God; His hope, love, comfort and healing in new ways each day: with Him, “all things are possible”—those things we cannot see with the human eye. I was praying, thinking of Jairus’ daughter: how Jesus’ touch “awoke” her when all seemed lost to healing. No life can be compared with another, but I trust God’s perfect plan for Emmy will unfold to His glory and to her good.”
Emmy had a pretty good day today, but tonight she had some difficulty again. She was up for several hours this afternoon. She ate a little, it all stayed down and she drank quite a bit. She was still pretty groggy all day and her speech was really difficult to understand which was so frustrating for her. I feel so bad that I can’t figure out what she is saying, but we are getting pretty good at charades. Around 6:30pm she began to exhibit signs of being uncomfortable. Her breathing seemed a bit shallow and her temperature was at 103 degrees. I gave her some additional medication which brought her temp down to 101degrees, but at 8:30pm she was still pretty anxious and uncomfortable. I called Hospice and they gave me some suggestions of what to try with her meds and by 9:15pm she was sleeping comfortably. Her temperature is down to 99.4 degrees. I pray that she will remain comfortable through the night so that she can get some rest. Thank you for supporting us through this emotional roller coaster, and for your continued thoughts and prayers.
Emmy’s update for today is a positive one. She woke at 3:45 am for a drink and went back to sleep untill 9am when she woke again. She was pretty alert this morning, not as groggy as she has been the past couple days. She asked for 4 different kinds of beverage, including her dad’s coffee. She also ate half of a jar of apple banana with mixed cereal baby food. While awake, she was pretty restl… ess. She did complain a little of tummy pain, and ended up throwing up what she had eaten in the morning. She was able to continue drinking throughout the day and it all stayed down. She talked today, and I was able to understand most of what she was saying. She is weak and her spoken words are very soft. Listening to her little voice was like music to my ears. The sound was so beautiful. We were all so excited. I knew she was feeling a little better when Jesse came in to see her (annoy her) this morning and she pushed him away and said “stop”. Ah, sibling love. She was awake for about 3 hours before she fell back asleep. She dosed on and off throughout the day. She became extremely drowsy again after taking her medication and has slept most of the evening. She gave us quite a scare Saturday. I am so thankful that we have had the chance to talk with her again. My family is truly blessed.
Emily finally woke at 5am this morning. How wonderful to see her beautiful big brown eyes and have her see and hear me talk to her. She was pretty restless and really groggy. She couldn’t talk, but shook her head yes or no to several questions I asked. She wanted me to crawl in bed with her. She kept clearing her throat. The first thing she said using sign language was that she wanted to eat… and drink something. I am so glad we learned a little sign language for her to communicate when she was a baby. We didn’t try to eat, but she did drink an entire sippy cup of ice water. She swallowed without difficulty. She was up until a little after 7am dosing on and off. She is breathing comfortably without oxygen. She is now sleeping peacefully. Thank you to everyone for all of your prayers.