the journey of a butterfly

khaliah's journey with sjs/ten

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The Butterfly Blog

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I hope you enjoy reading about my journey and learn more information about SJS/TEN.  

 

By Khaliah, Apr 5 2014 02:37AM

Khaliah Shaw made more progress yesterday and today. She moved from clear liquids, to soft foods yesterday and to a full diet today. But because of her having some trouble swallowing her food, I asked the doctor to put her back on soft foods. She was SO happy when they said she could eat regular food and of course was disappointed to go back to soft foods, but she agreed that the soft foods were best for now.


Last night, we sat and held hands while talking. We talked about everything. As we were talking, she began to have another seizure and then had 4 more today. This really has her scared because she doesn't know what's causing them or if this will cause her to be in the hospital longer. I know this must be frustrating for her because it is for me. That was the first time I witnessed the seizure and I tell you, it's scary. We're talking and all of a sudden it starts. This morning, I was feeding her and she had another one. While visiting with her friends, she had another one. And then she had the worst one tonight that lasted for about 10 min. She'll be seeing a neurologist tomorrow. They still think it's a withdrawal from being on all those heavy meds, but we need to be sure. They started her on anti-seizure meds tonight, so hopefully, that will get things under control while they figure out exactly what’s causing them. So we certainly have to keep praying about this!


She has her moments of being down, but overall she is in good spirits. I think it was great for her spirit to be able to visit with her friends yesterday and today. She was calling and texting her friends inviting them to come see her, but she gets tired easily. I think it’s best if we limit the visitors to 1-2 friends a few times per week and limit the visit to 20-30 minutes. I think any longer than that wears her out. She’s still trying to build up her strength, but will try to have fun with her friends. Then, she’s exhausted. So I’m asking all of her friends to coordinate their visits with me because I don’t want her to overdo it.


Now, as for me—I think this just about took me to the edge. I think because I could see the physical progress for the last few weeks and because she wasn’t having any complications, I could stay optimistic about her recovery. After today, for a moment, I just felt like I was at my limit. After witnessing seizure after seizure, I again felt helpless. Like there’s nothing I can do to ease her fears and frustrations. And there’s nothing I can do to stop the seizures...other than pray. Of course I did that!


I haven’t had much sleep since Thursday night. While I know I need to get some rest, it’s hard to leave her in such a vulnerable state. Even though I believe wholeheartedly that she will be fine, it’s still very difficult to see her going through all of this. Let’s pray specifically for her seizures to stop and her eye sight to get back to normal. Thank you all for everything...all the words of encouragement, prayers, visits, gifts, cards, contributions to her fund and for supporting us through this time. It really means a lot to us both! #teamkhaliah #mybutterfly

By Khaliah, Apr 5 2014 02:34AM

O------M-------G! Today was a big day for Khaliah Shaw! First let me start out by saying "can't nobody" tell me God ain't real! (Yes, I know that was bad grammar, but sometimes that's the only way you can say it to get your point across!) But let me go back to last night for a minute. Khaliah was asking when her feeding tube would be removed, when she could eat, when she could go home, and etc. She was a little disappointed because no one could give her a sure answer. They just kept saying, "not yet." I told her, let's pray. I prayed that God would make something happen, sooner rather than later, that her recovery would be faster. I asked Him to do something so that she would see that He hasn't forgotten about her. She was a little down when she went to bed.


This morning when I got to the hospital, a friend of mine Yolanda Kelly had stopped by the hospital to visit for a moment. I told her to come on and go see Khaliah with me. When we walked in, the doctor and two nurses were doing something to her, so we just stood near the door. All of a sudden, I heard the sweetest little raspy voice say "Mom, I can hear myself. I can talk now! I haven't heard myself for a long time!" Oh my God! I was in shock for a moment. I could do nothing but cover my mouth. She kept saying things and was crying. Then I started crying. I had not heard my child's voice in over a month and it was like hearing her speak for the first time. They removed the feeding tube today and changed her trach so she could talk.


The next thing she said was, "Call Granny so I can talk to her."


I got my phone and called my mom Vickie J Harris. She answered and I told her to hold on, let me put her on speaker. I put the phone near Khaliah and she said, "Hi Granny!" My mom said, "KHALIAH???? You can talk?" Oh, she was SO very happy! I don't remember all of what she was saying, but she was so excited and then she started crying. It was so wonderful!


So all day, she wanted me to talk to her. She wanted to know all of what happened to her, so I was able to explain all of what happened and all she could say was "Wow."


She also walked again today and that was so good to see. This was my first time seeing her get up and walk. She was weak of course, but she's getting stronger every day. I mean, to have to learn how to do everything again...she is so determined and I KNOW she will get through all of this.


She also was able to start eating liquids. First water, then a popcicle. I left to go to the restroom and when I returned, I noticed some Jello, juice and broth. She said, "Can I have my food?" I said, "Well let me check with the nurse." She says, "If they didn't want me to have it, they wouldn't have brought it in here! Please give me the food!" I gave her a spoonful of Jello and you would have thought she was in heaven! Then it was chicken broth. She said it was like Thanksgiving. My poor child was so hungry. After all the excitement, she was exhausted and took a well needed nap.


She also had a visitor today, one of her very best friends Tori McGhee. Oh talk about something so sweet. I could just see the love between these two. They hugged, laughed, cried. It was so sweet!


The only not so good thing was she had another seizure tonight. They've got to figure out what's going on with that, but think it's due to her withdrawing from all the medicine. I'm praying that she doesn't have any more.


She doesn't want me to leave her side, so I'm sitting her in the recliner next to her bed while she sleeping. I'll never forget the sound of that little raspy voice that greeted me today. Both of us were like, we kind of like that little voice! LOL, God is just too good! It's all because of Him! #teamkhaliah #Godanswersprayers #wontHedoit

By Khaliah, Apr 5 2014 02:22AM

This has been a very emotional day for Khaliah Shaw. She kept asking for a mirror, which I knew she would do at some point. She also had the nurse call me (I was at a doctor's appointment this morning) and tell me to bring her some hats. Of course I tried to find the coolest hats I could find. I also picked up a few bandanas.


She was glad to get the hats and wanted me to put one on her right away. I also bought a white board so that she could write. She wrote "I missed you so much." I then read some of the cards she received. She was so surprised that so many people sent cards and balloons. I told her that I'd started a fund and she looked at me like, "What?" I explained to her that people wanted to know what they could do to help, so I set it up so people could make contributions if they wanted. She asked if anyone sent anything, I told her yes and how much, and she wrote, "Wow...I'm shocked!" I told her that she had so many people praying for her and hoping she gets better. I then told her about one of her friends organizing a 5K walk/run for her cause and her eyes got big and she pointed to herself, as if to say "for me?" I said yes. She wrote " OMG...Why?" I said because they wanted to do something to help you pay for your medical bills and living expenses. She was overwhelmed with joy and started crying. She just couldn't believe that so many people were doing things for her. I reminded her how she was an inspiration to so many and many, many people love her. I asked her if those were tears of joy and she said yes.


Then she goes back to writing notes asking me did I bring a mirror. I told her no. She asked to see the pictures I'd taken of this whole ordeal. I was like "Lord, give me strength." I knew this was going to be hard for her. But I knew at some point, she was going to see herself. And if you know Khaliah, she will not stop until she gets what she wants!!!


I showed her the pictures. She was ok. Most of them were of her all bandaged up, so she didn't really see much. But then she said, "I want to see myself now." I'm like....Oh Lord! But I knew she wasn't going to rest until she saw. She took her hat off. I took a picture and showed it to her. She dropped her head and wrote "I'm ugly" and started crying. OMG that just broke my heart in a million pieces. I told her to look at me. With her face in my hand, I said to her "You are still the same beautiful person. You will be the same Khaliah we all know and love. You are getting better everyday and I know you may not know it, but you have come a LONG way and I will be right her with you as you get better. God has got you and this will pass and you're going to be alright." She ended up crying herself to sleep.


I know God must have had His hand on my shoulder. I don't know where I found the strength to not ball up and cry with her. I guess I just know that I have to be her strength right now. She's getting better, but keep praying for her healing, physically and emotionally. This is a lot for a young lady to endure. Losing all of her skin, nails and hair. It would be a lot for anyone to endure. But she is my "lil Shee" so she will get through this! #teamkhaliah #mybutterfly #DoitJesus #

By Khaliah, Apr 5 2014 02:21AM

Khaliah Shaw is doing great today, praise the Lord! She's off the ventilator and all sedation. She did well with her hydro-therapy today. She was awake through it and said she was not in any pain. Thank God for that because I know that can be painful. Her body is just about healed up. All of the pigment in her skin is not back, but a good portion of it is back. I'd say about 70-75% of her color is back on her body. Her face is still healing, but I can see the skin and color coming back every day. This process is amazing.


I think she's beginning to try and process all of this. With her being alert comes with her being aware of what has happened to her. She kept rubbing her head and wanted to know what was going on with it. I had to explain that because of her condition, she lost all of her hair and her nails. That had to be the most difficult thing for her. She started crying. It was heartbreaking! Like any young lady, I know she's worried about how she's going to look and whether she will be back like she was. I tried to encourage her that her hair has already begun to grow back and it will continue, but she just keeps rubbing her head. I told her I'd get her some wigs, hats or whatever she needed while her hair is growing back. She made me pinky swear. Of course I did. I asked her if she wanted me to shave my head so she wouldn't have to go thru this alone. She said yes (of course she would LOL). I'm like.....Oh boy. I guess I gotta get the clippers out!


She also was a little shocked when I explained to her that all of her skin came off. Her expression was like "What???" Then she started crying again. I know this is hard for her. It's hard for me to try and explain it and be positive. But I reminded her that God has never let her down and He won't now. I told her she's come a LONG way from where she was a month ago. I took pictures and once she's a lot better, I'll show them to her, but for now, I think it will just add to her anxiety.


She's taking a nap now. She even turned on her side to get more comfortable. Well...looks like she's waking up and needs me to do something for her. Gotta go, but I'll do another update soon! She's doing well though and I know God will give her the strength to get though this other phase. He's got my butterfly! She'll be ready to fly real soon! #teamkhaliah #mybutterfly #Godsgother

By Khaliah, Apr 5 2014 02:19AM

Khaliah Shaw is doing well! She had another great day. Physical Therapy had her up walking! She was able to sit up and move to the edge of the bed by herself and she walked a few steps and sat down in the chair! Yay!


This girl is something else! She went to sleep and I stepped out of the room for about 20 minutes. When I came back, she had stripped! Her gown was off, the covers were on the floor, pillows on the floor. She was hot, so she came out of those clothes. Way too funny!


She was able to see, so she started looking at her body, pointing and rubbing on her thighs. She wanted to know why her skin was splotchy. I explained to her that was her new skin growing back and the doctor explained everything to her and she seemed to be ok with it. She found out that I could rub cocoa butter on her, so you know she put me to work! She started trying to take her bandages off so we could put cocoa butter on that too, but we had to explain to her that she had to keep those on because she was still healing. She was pointing to everything, wanting to know what it was. She was fine once it was explained to her. You see, my daughter has always been VERY inquisitive! She wants to know everything about everything.


She sat up in the bed and watched a little TV before falling asleep. She's certainly much more alert and active! Thank God for that! #teamkhaliah #mybutterfly #letspraiseHim #Hewilldoit

By Khaliah, Apr 5 2014 02:18AM

Khaliah Shaw had a good day today! She was much more alert and active. When I came in the room to see her today, she opened up her eyes and reached out for me to hug her. I asked her if she could see me, she shook her head yes. Her eyes are doing better. Only time will tell if she will have any issues with her eyes after she heals. Her skin is still healing well. She is losing her nails, but they are growing back. I also bought her some sunglasses today. Her eyes are very sensitive to light. Of course I had to get ones with a little bling! She may as well be fly!


She was a bit more emotional today. I asked her if she knew where she was and remembered what happened, she shook her head yes. When I told her she'd been in the hospital for almost a month, she started to cry. I reassured her that she was doing much better and would be fine. She didn't believe me, but I reminded her how strong she is and how much of a fighter she is. She shook her head yes. I told her I'd be there to help her get better and she wouldn't have to do it alone. I let her know how many people were praying for her and all of the cards and balloons she has received. That seemed to make her feel a little better. I felt so bad for her. I know this is only the beginning of her needing encouragement.


I asked her if she wanted to hear some music, she said yes. I turned on "Blurred Lines" and she started dancing! Had the whole bed shaking! I had to video that. She is just too much! She danced for a few minutes, then was ready for me to turn it off so she could rest. She answered yes when I asked her if she wanted some of her friends to visit. So as she continues to get better, she can start to have visitors.


She even asked for her cell phone! I'm like...you can't talk. She motioned that she could text. I said you will soon enough!


Let's continue to pray and thank God for her recovery! #teamkhaliah #mybutterfly #Godisgood #Heistheultimatehealer

By Khaliah, Apr 5 2014 02:17AM

Khaliah Shaw is a bit more alert today. She's been trying to sit up, moving her hands and legs, etc. She's able to respond with yes/no answers and get our attention when she needs something. She's doing well and haven't had any issues so far today. THANK GOD!!!! After we were able to get her in a comfortable position, she has been getting some rest. They are slowly weaning her off the sedation meds so that her body doesn't have as difficult of a time adjusting to being without them. Should be just a few more days before she's completely off. Let's pray that there are no more seizures and she doesn't need to go back on them. \0/


I took my mom to the airport this morning and she's back in Tulsa now. As much as she hated to leave, I know she needed to get back home. If nothing else, to get some rest. Running back and forth to the hospital everyday, and sleeping here on some nights, can wear you down. But my mother was determined to be there for Khaliah and the month that she was here, she never missed a day of being by her side. Khaliah and her Granny have a very special bond! They are crazy about each other!


I'm still working on getting the website up. My cover page has the info on sending cards/balloons and/or making contributions. A HUGE thank you to those who have contributed. We sincerely appreciate it!!!!! #teamkhaliah #mybutterfly #Heisincontrol #HesanontimeGod

By Khaliah, Apr 5 2014 02:16AM

Khaliah Shaw is just resting. No changes. I also wanted to let everyone know that I've posted all of The Khaliah Shaw Fund info and the address to send cards/balloons as my cover page so that it's easier to find.

By Khaliah, Apr 5 2014 02:15AM

Khaliah Shaw had go back on the sedation today. She had a seizure today, so they put her back on some of the meds. Most likely, the seizure was caused by completely stopping the heavy meds instead of weaning her off slowly. Her body was going through withdrawls. So it may be a few days before she's alert again. They say she's going to be fine and is still doing well. They are just trying to prevent more seizures. They did some tests, CAT scan, etc. and they said everything looked good.


She also was put back on the ventilator yesterday just in case and they were going to take her back off today, but after the seizure, they decided to keep her on it. She's still breathing on her own, just have it to monitor her breathing and provide support if she needs it.


Most of the skin on her body is back. Her face will be the last to heal, but it's also showing signs of healing. They shaved her head, so she'll have to grow all of her hair back. I know this is going to be hard for her. As she was starting to wake up, she kept feeling her face and head. I guess she was trying to see what was going on. While she was alert the first 24 hours and knows that she was in the hospital, she doesn't realize all that she's been through.


I was SO tired yesterday that I didn't do an update. And I didn't feel well. But I'm doing better today. I think I just needed some rest. She was pretty lethargic yesterday, but was still responsive. Now because of the sedation, she's not really responsive. We are planning to have someone with her at all times because we want to make sure if anything happens, we can get the nurses since they cannot be with her 24/7.


My mom is leaving tomorrow morning. She has been such a huge help! I couldn't have gone through this without her. THANK GOD for Vickie J Harris! Not only has she been supportive of Khaliah and I, but for many of the other families too. All the nurses know her! She's made many friends while she's been here. But you can't help but to love her. She's a great woman! #teamkhaliah #mybutterfly #supergranny #bestmomever

By Khaliah, Apr 5 2014 02:14AM

Khaliah Shaw had physical therapy today and she did an awesome job! Even though she was a little groggy, she was able to do all of her leg and core exercises. The other day during her PT, they even gave her mix-match socks since they know she likes them. Their goal is to have her up walking soon! Still doing well! #teamkhaliah #mybutterfly #itsallGod #Heheals

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