The PICC Line

Now that we have completed our experience with a PICC line I can let you all know what it was like. 

To start, a PICC line is a "Peripherally Inserted Central Catheter". It is a small flexible tube that gets inserted into a peripheral vein, in Alexis' case it was in the upper area of her left arm, and goes up the arm and to the chest until it terminates into a large vessel near her heart. An ultrasound is used to guide the line through the vein and into the chest. They also do an x-ray of the chest to confirm the placement of the PICC catheter. 

Alexis had this done at a hospital. They gave her the option of being put to sleep or staying awake for the procedure. I knew since Lex couldn't even sit still while a regular IV was put it that there was no way she would sit still while the "fished" the PICC line up her arm and into her chest. Alexis had another IV put into her arm. The anesthesiologist needed this one to put Alexis to sleep.

While we waited to go in Alexis was nervous but we tried to keep her mind off of it. Luckily, the doctors let Scottie and I come into the procedure room with her. That made both me and her feel so much better. I couldn't imagine how scared she would have been just going in there alone. As a matter of fact, they let Scottie and I stay with her until she was put to sleep. 

The room itself was a little intimidating. Alexis all of a sudden wasn't so scared though. I was shocked. The nurses showed her all the cool things around the room and even let her play with the ultrasound machine. They let her use it to find the veins in Scottie's arm the same way they were going to use it on her arm. This made things so much better for Alexis. I have nothing but good things to say about the way the doctors and nurses worked with Alexis.

Once everything was set up and Alexis was ready, the anesthesiologist started the medicine to put her to sleep. Within seconds Alexis said "It's time, Mommy. 10...9...8" and she was out. No one even told her to count backwards or anything. It was silly but so much calmer than the last time she had to be put to sleep. That time she was screaming and crying so they put her right to sleep in that state - I watched her fall asleep in front of me with the tears still falling from her face. That killed me. Soo, Alexis being so calm made it much easier for me to walk out of that room. 

They said the procedure can take anywhere from 20 - 45 minutes. Scottie and I waiting right outside the room. About 25 minutes later the doctor came out and said they were done and just waiting for Alexis to wake up. They let us go back in the room by her while she was still passed out. This made me sooooooo happy. I was standing by her side when she fell asleep and I was there the second she opened her eyes. Kudos to that hospital - once again. 

When Alexis woke up she was still a little out of it. She had to be brought back to her hospital room where they would give her the first dose of her antibiotics through the PICC line - in Lex's case it was Rocephin. They wanted to make sure she didn't get any immediate reactions from it. Lex couldn't wait to get home though. At this point she had been at the hospital all day. They gave her the medicine and we waited a little while after to make sure everything went okay. Before we knew it, they were sending us home. 

Alexis' arm was sore - they said it would be for the next couple days. We gave her tylenol to help with the pain. The doctors in the hospital also told us to switch back and forth between an ice pack and heating pad. This seemed to help Alexis. Within a few days her arm wasn't sore anymore and she was getting more used to having the PICC line in.

At this point we knew we had to figure out the easiest ways to make this work for the next 28 days. One of the biggest struggles we faced was taking showers. The PICC line can not get wet. There are covers you can buy to protect the PICC line from getting wet while you shower - we never got one of those though. The first couple times Alexis needed to shower her arm was still really sore so she chose to take a bath instead so I could help her and she didn't have to worry about lifting that arm at all. We covered her arm with a plastic bag and she kept her arm on the edge of the bath tub. I washed her hair and helped her bathe herself. After a couple days I told her I would buy her the cover so she could shower but she was still too scared of showering - so we decided to stick with the baths. That seemed to work for us. She is going to be 10 years old soon so I thought she would rather me not be there with her. I felt like it was an invasion of privacy but she seemed okay with it. I always tried to be as quick as possible for her. Throughout the entire 4 weeks Alexis kept saying "The second this thing is taken out I'm getting right in the shower and I'm staying in there for an hour!". 

Another obstacle we had to face was what we were going to cover the PICC line with on a daily basis. They put a dressing over it - but that is clear and it also leaves the catheter dangling out. The hospital gave us a netting kind of cover. Although this was light and convenient - it didn't look too "cute" and I felt like the catheter could still get caught on things. I didn't want to risk it pulling even a little bit. I spent the entire week before Alexis got her PICC line put in searching for some kind of "PICC line cover". If you do a google search for PICC line covers it basically only shows you the water-proof ones that are meant for showering. There was only a couple websites that had anything fashionable. All the websites and forums say to just cut up a long sock. That just seemed silly to me though. How could there not be actual PICC line covers out there? 

I came up with the idea of using baby leg warmers as a PICC line cover. They could slip right up the arm, be tighter on both ends (something a cut up sock wouldn't do) and the best thing of all - there are hundreds of styles and colors to pick from! I had a pair from our baby that I tried on Alexis' arm and once we decided it did, I let Alexis pick out new ones. I bought them from e-bay. I found that was cheaper than going to the store and buying them. I got one pair off e-bay for just a couple dollars plus shipping. You can also find them on many other websites. The good about buying them off websites - there are hundreds of brands, styles and colors to pick from. The bad - you have to wait for them to get shipped to you.

Alexis' PICC line covered by a baby leg warmer. - It worked perfectly!

I feel that the BabyLeg brand of leg warmers worked the best as a PICC line cover. They weren't too thick and stretched over the PICC line easily. Some of the other brands weren't as comfortable for Alexis. If you can't find the BabyLeg brand at a store by you, you can always try their website. Lex is obsessed with anything zebra. She was so excited to find a pair of leg warmers that was pink and black zebra. Wearing a "cute" PICC line cover definitely made her feel better about going to school and being in public with a PICC line in.

Every week Alexis' nurse came to change her PICC line's dressing and take her blood work. Alexis hates getting her blood taken. Luckily, when you have a PICC line they can take the blood right from it. It's much easier than having to stick her with another needle. The dressing changes aren't as easy. Taking off the old one was very painful for Alexis. The first dressing that the hospital put on the PICC line had to be changed 3 days after it was put on. This was the worst experience. The dressing the hospital used was awful. It ripped off Alexis' skin so badly. Her arm is still healing from that and it's been 5 weeks now. Since the first time was so traumatizing, Alexis hated the idea of getting the dressing changed every other time it had to be done. The nurse put a different kind of dressing on Alexis' arm though and it came off much easier. It still hurt when the nurse would pull the tape but nothing like it did that first time. Once the dressing was off the nurse would clean the area around the PICC line's insertion site. Alexis always said this felt so good. Her arm was usually very itchy and irritated from having the same dressing on for a week. When the nurse cleaned the area it felt very soothing to her.

Every time Alexis got her dressing changed she would get very nauseous and light-headed. I think it may have been anxiety. Alexis knew the nurse came every Tuesday morning, so she would start getting worked up about it the second she woke up on Tuesdays. Luckily, she never did pass out but every single time Alexis got pale as a ghost and dizzy. The nurse usually had to go as quickly as she could so Lex could lay down on the couch. I know getting blood taken didn't help either. That would also lead to Alexis becoming light-headed. 

The first time Alexis got her dressing changed and blood taken I was standing right there next to her, trying to comfort her. She started to get light-headed until she was completely white. Her lips were starting to blend in with her skin. She kept saying "Mommy, I'm going to pass out". She started sweating and just feeling awful. The nurse was trying to finish as quickly as she could. I held a cold wash cloth on the back of her neck and was wiping her face with another one. A couple minutes later, Alexis was feeling better - but I wasn't. I started sweating and feeling really light-headed. I thought for sure I was going to pass out. I had to step away from Alexis and sit down. I hoped it was just going to go away but it didn't. I started to feel nauseous. I went into the bathroom in case I started getting sick. While all of this was going on the nurse finished up with Alexis. Lex was still feeling a little crumby so she laid down on the couch. Makenzie (our baby) started crying for me but I couldn't even go get her. The nurse helped me with her until I started feeling better too. It was the weirdest thing. I am a mother of three - blood and things like that don't ever make me sick. I don't know what happened that day. I felt like God took all the sickness away from Alexis and gave it to me - which is perfectly fine with me. I know it sounds a little crazy but this really happened. Every Tuesday after this first time, the same thing happened. I would be fine until Alexis started getting dizzy and nauseous - then within minutes I was dizzy and nauseous too. It happened up to the day Alexis got the PICC line taken out. I think I have finally found my biggest weakness - seeing one of my daughter's in any kind of pain. 

The last time Alexis got her dressing changed was 3 weeks into having her PICC line. We finally reached the single digits in our countdown to when the PICC line would be taken out. The dressing change happened on Tuesday morning. Everything seemed the same. By Tuesday night I noticed Alexis was getting bumps on her arm. They were small and really just looked like heat rash. I had Alexis sleep with a mesh-like cover on her arm to let her arm get some air. The next morning Alexis' arm was much worse. It was red, itchy and the bumps were a lot bigger. I called my mom and ask her to come to our house on her way to work so she could look at it. When she got there she looked at it and realized there were bumps forming underneath the dressing itself. My mom thought it was either heat rash or just a rash from being covered for so long. We waited another day. 

The PICC line with the mesh cover on it.

Thursday evening I took Alexis' cover off her arm to start her IV. Her arm looked worse. The bumps that were under the dressing now looked like big blisters. Her entire arm looked swollen and red. It was bothering her so much. I called my mom. We decided to call my aunt who is a registered nurse. She was going to head right over to look at it. She felt the dressing needed to be taken off. I called Alexis' nurse and they sent a nurse to my house. This nurse changed Alexis' dressing and put on a different kind of dressing. When she pulled the dressing off it ripped open the blisters that were under it. I felt so badly for Alexis. I wish she could have just kept everything off of it so the rash could get air and heal. Lex had to keep it covered for a couple more days though. 

Alexis' arm with the blisters caused by the allergic reaction to her dressing.

I couldn't believe in the last week of having the PICC line in, Alexis got an allergic reaction to the dressing. I'm glad it didn't happen in the beginning though. That would have been so much worse. Alexis only had to keep it covered for two more days with the rash. 

This is the different dressing that the nurse put on Alexis' arm for the last couple days.

The next night I gave Alexis her very last treatment of Rocephin through her PICC line. When the IV beeped, telling us it was done, Alexis was sooo excited. Until she remembered she was going to get the PICC line taken out the next morning. She was not looking forward to that. She knew the dressing was going to have to be ripped off again. Plus the whole idea of the PICC line coming out really freaked her out. Alexis wouldn't let the nurse near her arm. My mom had to hold her down and the nurse just quickly pulled it out. Alexis didn't even know it was out. That proved to me she wasn't in any pain, she was just scared. 


Now Alexis' rash was going to be able to start healing. Within a week it was so much better and before we knew it the whole rash was gone. It's now been two months since the PICC line was taken out. Alexis has a couple scars on her arm but they are small. 


All in all I would say we had an okay experience with the PICC line. I don't think I would say the same about the medicine, but the PICC line itself was okay. I am so proud of Alexis for being so strong through all of this. She proved her strength over and over again within those 28 days. 

"You never know how strong you are until being strong is the only option you have."

It can't be...

Alexis on her 10th birthday at her first Yankees game. God, I love that smile!

A couple months have passed now. A couple of  really rough months. I lost sight in writing. Mainly because my life became so chaotic that I don't have much time to sit down and write, but also because Alexis has been doing really well.

After the Alexis got the PICC line taken out she was making improvements every single day. Things were looking up. It got to a point where she was feeling good. The stomach pains finally went away. The headaches became rare. And the joint pain would only come a couple times a week. Even the blinking has gotten so much better. It would happen on randoms days for only a short period of time. Things really started looking better for my girl and all I could do was pray that her health continued down that path.

That doesn't seem to be the case.

For those of you who have followed Alexis' story from the beginning know that it was only a little over a month after finishing her first dose of medication when her symptoms started coming back. Well, here we are - two months after Lex finished her dose of the rocephin and the PICC line was taken out - and the symptoms are coming back. My heart is broken for my little girl. This is not supposed to be happening.

It started back up with the headaches. Alexis started getting them regularly again. Two weeks ago Alexis got a headache that brought her to tears. She laid down on the couch and couldn't move. I made the room as dark as I possibly could and gave her a cold wash cloth to put on her forehead. I gave her medicine and had here drink a bottle of water but I knew at that point, they weren't going to help. She ended up falling asleep on the couch so I just left her there for the rest of the night.

A couple days later Alexis woke up screaming for me. I ran into her room and once again it was her head. She woke up in so much pain. I knew there was nothing I could even do. I laid there with her holding her and trying to calm her down because I knew screaming and crying wasn't going to make it any better. I wanted to scream myself when I saw her in this much pain. It brought me back a couple months ago to the memories of her screaming in pain knowing there was nothing at all that I could do.

Alexis' limbs have been falling asleep on her more often again also. At cheerleading the other day her arm fell asleep. She was using this arm, moving it around, when it fell asleep. That doesn't make sense to me. Her legs are falling asleep on her at random times again too. Also within the past few weeks Alexis has had stomach pains and she has been very tired. There are days when she doesn't want to do anything but sleep. Again - giving me flashbacks.

All I can do is pray that this doesn't turn into something more than it already is. In a few weeks it will be a year since Alexis was diagnosed. This has been the worst year of our life - by far. I hate sitting here wondering what is going to happen next, and if this is really coming back. It can't. Alexis can't go through another year like this past one. I found myself taking for granted her "good" days. Now I am back to cherishing them.

So - please keep Alexis in your prayers again. This can't happen again. 

Stress.

I am so happy to write that Alexis had a good day today. She felt good this morning, made it through the school day and got to practice during softball tonight. Lex told me she had to sit out for a few minutes at practice but that it didn't last long at all. Tonight we went to my mom's house for dinner then to my little sister's basketball game. Lex felt good through it all though.

Alexis has had a book report to do. Since she had such a hard time with the last book report, my mom read the book with her this time. They stopped after each chapter to summarize what they just read. This week Alexis started working on the project. It was much easier for her this time. I was so glad. She didn't spend hours with that blank stare on her face - looking and feeling lost. She was able to get motivated and work right through it. The project is due tomorrow so Lex had a couple things to finish up tonight. It was basically just coloring in a few pictures she had already drawn. For some reason this ended up being so stressful for her. The pictures were already drawn, the whole project was basically done - this was the easy part. She gets herself so worked up over the silliest things. I always end up having to tell her to take a break, but then she throws a fit about that, saying if she takes a break she won't get it done.

I know Alexis is at the age where she is going to start getting hormonal and moody, but dealing with that on top of the "lyme rage" is too much for her to handle. When I first started talking to people who have had lyme disease this was one of the things they warned me to watch out for. Anything can cause the rage - usually the littlest thing sets it off. So for Alexis to get soo worked up tonight the way she did over coloring a picture the first thing that came to mind was the lyme rage.

I have talked to Alexis about this. I try to explain to her how such little things aren't worth getting so angry about. When it happens I try to just be there for her and comfort her. I know getting upset won't do her any good. I usually try to "kill her with kindness" to bring her to a better place. Luckily, I have figured out how to get her out of it pretty quickly.

Lex has a softball tournament this weekend - which means she is going to have 3 games on Saturday alone. I'm going to bring her to the chiropractor tomorrow after school. That always helps with her joint pain and I believe it's even helped with Lex's headaches too. That should help her get through this weekend. I know how much she hates having to sit out during a game so anything we can do to prevent it is worth it!

Her Strength

Yesterday was an okay day for Alexis. She made it through the school day but wasn't feeling 100% when I picked her up. An hour after school she has softball practice. By the time we had to leave for practice she was only feeling worse. Her stomach was killing her. I had her try a couple different things to see if it would help but it didn't. She tried going to the bathroom but she couldn't. Although she was feeling really uncomfortable, she still wanted to go to practice. When we got there she just sat on the bench for a while. The doctor's told us it's best for her to move around when she gets these pains but they hurt so much that she doesn't want to.

Alexis kept telling me all she wanted to do was practice and that she was sick of sitting on the bench, but every time she would stand up to grab her glove she could barely move. Luckily, she got some playing time in during the last 20 minutes of practice. By the time practice was over she was feeling okay again. It always happens at the worst times but at least she was able to still make it to practice.

After softball we went home so Alexis could hop in a quick shower. Then we headed off to our town's board of education meeting. Alexis was to receive and award for a poem she wrote. This poem got published in a book! I bet you can't guess what her poem was about . . . softball! It was called "A Homerun Hit". I couldn't be more proud of her. My mom and Grandma were also there to see Alexis get her award and a copy of the book she is published in. After the awards were over, my Grandma treated us all to ice cream at Friendly's. We had a wonderful night.

This morning Alexis was woken up by those awful pains again. At first they were only in her stomach. She was able to go to the bathroom and rest for an hour before she had to get ready for school. Alexis was excited to go to school today because it was the 4th grade awards ceremony and the 4th grade picnic. The kids look forward to both all year. While Alexis got ready for school she was feeling better. I was so relieved. I didn't want anything to ruin this special day for her. When it was time, we headed out the door.

When we pulled into the school's parking lot we realized we forgot the fruit salad Alexis was supposed to bring in for the picnic. It was still sitting at home in the refrigerator. I decided to run back home and grab it since we live so close. I went inside to get the fruit salad and when I came back out to the car Alexis was in tears. She was saying her chest hurt and she couldn't breathe. I told her we could sit in the car and wait a few minutes because it would probably go away. The pains went from her chest to her back and eventually her stomach was hurting again. I started to realize it was only getting worse, not better. So we decided to go back inside. I carried my younger daughters in then ran back out to help Alexis in. She couldn't stand straight and could barely walk. The entire time we walked inside she was screaming and crying. I got her onto the couch and she crawled up into a ball.

Once again I kept reminding Alexis that we knew what was causing it and that the doctor's say the best thing for her to do is move around and get the gas bubbles and everything moving. She wouldn't even try. After a little while I got her to walk from the living room into my bedroom. She wouldn't go any further though. She laid in my bed and just cried. Every few minutes the pain would get really bad and she would scream and wiggle around saying she couldn't do it anymore. I felt so helpless. Nothing I did made her feel any more comfortable.

Alexis kept saying this time was worse than any other time. I reminded her that she feels that way every time it happens - and every time she gets through it. She looked at me, with tears running down her face, and said "Mommy, why is this happening to me?!?!?!" I dread hearing that question. It breaks my heart. My eyes started filling up so I held her in my arms so she couldn't see my face, and I reminded her it was because God knows how strong she is. She kept saying she wasn't strong - so I reminded her of a couple things she experienced these past couple months. She still didn't want to hear it though. My little girl has no idea how strong she really is. Her strength inspires me.

I was praying these pains would lighten up so she didn't miss school. I knew how excited she was for the awards ceremony and for the picnic. After about an hour of dealing with excruciating pain, she was finally starting to feel better. At this point I told Alexis to just relax and that I would take her to school when the awards ceremony started since I wanted to go to the school for it anyways. I thank God that Alexis was able to be there for it. She got quite a few awards - more than she was expecting. I am so proud of her. She is such a wonderful little girl - and I'm really not just saying that because she's my kid! ;-)

After the awards ceremony Alexis was still feeling okay so I headed home only to come back to the school and hour later for the 4th grade picnic. This is a special event for only 4th graders and their parents. Scottie stayed home with Kaelynn and Makenzie so I could be alone with Alexis. It was a nice break from our babies and it was really nice getting to do something alone with Alexis. Most of the time she ran around and played with her friends. Occasionally her belly would start to hurt so she would just come sit by me for a few minutes until she felt better. Overall, Alexis had a blast. I'm so glad she got to enjoy her special day.

Tonight Alexis' ankles and legs were hurting her a bit. I put some icy-hot on them and massaged them for her. I'm pretty sure it was from running around for so long today. Her legs can't handle all of that yet. Her ankles did look swollen too. I gave her some aleve which seemed to help. She worked on a school project for a little while and headed off to bed. I'm hoping her legs and ankles are better by tomorrow. Alexis has a softball tournament this weekend - which means she has three games on Saturday (and there will be games on Sunday too). I'm going to have her rest up the next couple days so she doesn't have to miss any of the games - I know how much that kills her.

All in all, it was a long day. I'm glad my girl is peacefully asleep.
I'm praying tomorrow is a better day.

The Blinking

I took a little break from writing. Mainly because softball took over our lives but also because I have been emotionally drained. I have some catching up to do...

A little over a week ago I brought Alexis to the doctor because of her eyes. I wasn't happy with how the appointment went or with the doctor's diagnosis. After barely looking at Alexis' eyes or listening to me, the doctor said Alexis had allergies. He gave us eye drops to use and said that would make it better. I knew it wouldn't though because I was already putting allergy drops in Alexis' eyes and using oral medicine. They made no difference.

The weekend after that appointment Alexis had a softball tournament. Alexis had two games on Saturday morning. She was able to play the entire first game, without any aches or pains. A couple hours later she had a second game. During the second game those scary chest pains returned. She was short of breath and kept saying her chest hurt every time she would breathe in. After resting for a while she started to feel better. This game ended up being one of the longest games ever. It wasn't raining, but there was thunder. Every time it thundered they would have to postpone the game for 30 minutes. This kept happening. So by the time they really got to finish the game, Alexis was able to play again. They finished off this game and we headed home for the night.

We had the girls in bed early because we knew the next day would be another long day in the sun. Scottie and I were relaxing on the couch when we heard Alexis start yelling for us. As we got up to go into her room, I saw her get out of her bed then fall back down to the floor. She curled up in a ball and started screaming. It was the stomach pains. They were back and worse than ever before. She also said the chest pains were back and for the first time she had pains in her back. Nothing I was doing made it any better. I was so scared so I called my mom like I always do. She said she would come right over. Luckily, she only lives a couple blocks away so she was here in minutes. Nothing she did for Alexis made it any better either and the pain wasn't lightening up at all. We decided to take her to the emergency room. My sister came with my mom so she was able to stay with our other two daughters. Scottie carried Alexis out to the car and we left right away. My mom left right behind us.

When we got to the hospital they took us into a room right away. Before we knew it the doctor was with us. At this point Alexis wasn't screaming or crying anymore, but the pain was still there. We told the doctor how Alexis was just in the hospital about a week before and they determined it was constipation causing all of the pain. The doctor examined Lex but decided not to take more x-rays or blood work. She was just going to look at the results from the prior week.

The doctor determined that these pains were still being caused from the constipation. She thinks the chest pains are from gas. Then she went on to tell me different foods and substances that could cause the gas pains. She named vegetables, fruits, fibers, spicy foods, and a few other things. When we thought about it - Alexis had all of those within the past couple days. Not only did she eat tons of vegetables and spicy foods, I was giving her chewable fiber pills THREE times a day! I felt horrible, to say the least. I thought I was doing the right thing by trying to help her with the constipation, but really I was causing Alexis to have gas pains.

We also asked this doctor about Alexis' eyes while we were there. I explained to the doctor how Lex's pediatrician said it was allergies. After she examined Lex's eyes and face, she determined right away that this was not allergies. She said she wasn't 100% sure of what it was but that it could be a sinus infection. She prescribed Alexis an antibiotic and told her to try this to see if it makes a difference. She said if the antibiotics don't work, at least we would have eliminated the two most common causes for the pains she was having in her face and eyes.

Although I didn't get all the answers I wanted, I was happy to at least be heading into the right direction. I knew now to stop giving Alexis fiber and to watch what she was eating. I was hoping the medicine would help her eyes and face so we didn't have to go any further with that.

I was optimistic.

It's been a little over a week now. I stopped giving Alexis the fiber pills and she hasn't had the chest pains at all. The stomach pains still come and go but not nearly the same as they used to. After taking the antibiotics for the sinus infection, Alexis' face is feeling a little better and her eyes aren't so red and swollen. But, Alexis is still blinking a lot. All day, every day. Although I'm glad the pain has gone away, I'm still very concerned about the blinking.

The other day I took Makenzie to the doctor for her 9 month check up. The appointment was with the same doctor who originally diagnosed Alexis with the lyme disease. Alexis didn't have school that day so she was with me for Makenzie's appointment. The doctor was happy to see Alexis. Although Lex was there a week earlier, she had to see a different doctor that day. We filled the doctor in on everything Alexis has been going through. I didn't have to tell her about the blinking - she noticed herself. She said she didn't think it was allergies or a sinus infection. This doctor thinks it's a tic - caused by the neuro-lyme disease. She said to take her back to her neurologist because he would know best.

After hearing that I felt so torn. If it was a tic - like Tourettes Syndrome - it would be one more way the lyme disease has hurt my baby. This list is getting too long. I would much rather it be something that a simple antibiotic could cure - but obviously that isn't that case. Since hearing that, I have been so upset every time I look at Alexis. The blinking is so obvious and I know everyone around her notices it. It's got to be so humiliating for her.

This morning when I woke Alexis up I crawled into bed with her. We were just laying there chatting. At first Alexis still had her eyes shut but they were still making the "blinking" motion - every couple of seconds her eyes would squeeze shut even more. Lex used to tell me that she blinked so much because the light was bothering her eyes - but this morning her eyes were shut and they were still blinking. It couldn't have been because of the light. While we laid there I asked her if she was making her eyes blink so often or if it just happened. She said she didn't really know. I asked her to try to start paying attention to it the next couple days. I told her to note if she is doing it because her eyes feel dry, or itchy, or if it's from the light - or if she really just has no control over when it happens. I told her that will just help us explain it to the doctor. And I promised her that we will get to the bottom of it. (fingers crossed)

I can't stop thinking about Alexis' blinking eyes though. Last night before she went to bed she was telling me a story and I couldn't even focus on what she was telling me because I couldn't stop thinking about her big beautiful blue eyes constantly blinking the entire time she talked to me. I wanted to cry but I knew I couldn't. After she went to bed I went and laid in my bed and cried. I feel so helpless. What if this is a tic? What if it doesn't go away? Now she wouldn't just have a silent disease - where no one could see her suffering - she would have to deal with something so obvious to everyone around her.

When I woke up this morning I found out that a young boy in our town took his own life. My heart aches for him and his family; may he rest in the sweetest peace. It really got me thinking. There must have been something so awful going on in his life that he really felt there was no other way to get around it. I can relate. I felt that way many times. I didn't have the easiest life and I hit rock bottom too many times. Luckily - I've always pulled myself through. I have spent many years trying to protect Alexis from feeling that way. I never want her to feel like there is just no other way out. I want to make her strong enough to get through anything life throws in her way. The problem is - there is way too much hatred and bullying going on in the world. It makes me sick. Not only do I want to protect my kids form being bullied - I want to do everything I can to make sure my kids don't turn into bullies.

When we first moved back to NJ, there were boys in school who called Alexis fat. She never told me about it - I had to find out myself. I started to investigate after Alexis wasn't eating as much. She went from being the girl who would eat 2 slices of pizza to the girl who barely ate a half of a piece. Once I noticed the change in her eating habits I asked her about it. She just blew it off like it was nothing. After asking around I found out what these boys in school were saying and it killed me. I wanted to go to each and every one of their houses and scream at them. I was at that point that I realized Alexis needed a little more reassurance that she is beautiful no matter what anyone says about her. And not for nothing but Alexis is not even fat - she never has been. She isn't a skinny little twig, but she's no where close to overweight. My point being - if kids will make fun of her for something that is barely even true...what will they say when they really start noticing the blinking. With Alexis having such an obvious tic - I feel like she will be an easy target. The bottom line is that kids now-a-days are cruel, and there's nothing I can do about it. I just have to pray that this either goes away really soon or that I have raised Alexis to be strong and confident, no matter what other kids say.

Aside from the blinking, Alexis has been feeling pretty good the past couple days. She has made it through a few softball games with no pain at all and a bunch of school days. Her arm is almost completely healed from the PICC line now too. Although it's only been a couple days...it has been weeks since Alexis felt good for a couple days straight so what a relief this is. I'm praying that better days continue to come our way. 

If it's not one thing, it's another.

I'm pretty sure I could scream right now (if I wasn't afraid of waking Makenzie up from her nap). I am so irritated. Let me rewind a little bit . . .

Remember those "red eyes" Alexis has had this week? First I was thinking it was a sinus infection because of the way Lex was feeling, then I thought they were allergies. I have had allergies my whole life and my little sister has them very badly. So allergies aren't something new to me. Well, they have only gotten worse.

Yesterday Alexis had to come home from school again because of her eyes. When I picked her up she kept saying she just wanted to get to the car as quick as possible so she could shut her eyes. Again they were red and swollen. She would constantly blink just to avoid the light. When we got home I kept asking her a hundred questions trying to figure out what exactly this was. Before school (and for the past 2 days) I gave her allergy medicine and put allergy drops in her eyes. They did nothing. Alexis says her eyes aren't itchy, they actually hurt. Under her eyes, above her eyes (as far up as her eyebrows) and her eye lids hurt when you touch them. The eyes themselves are completely red and swollen.

At softball last night I was telling a friend of ours about Lex's eyes. She said her husband dealt with that same kind of thing for years. So I talked to him about it. He has iritis which is a painful inflammation of the iris of the eye. When I explained some of Alexis' symptoms to him he said that was exactly how he felt. As soon as I got home I researched iritis. Interestingly enough, there is a connection between iritis and lyme disease & rheumatoid arthritis. The amount of people with chronic lyme disease who end up with eye problems is outrageous. I knew I couldn't put this off any longer in case it was something more serious like that. 

This morning Alexis' eyes looked and felt the same. She could barely open them. There was no way I could expect her to go to school. I called the doctor as soon as they opened and got an appointment for an hour later. When we got there the doctor asked Alexis how she felt. She explained it the best she could. Afterwards the doctor asked me if I noticed any yucky stuff in her eye - that would go along with pink eye. I haven't noticed it at all. That's also something I am very familiar with so I knew from the start this was just different. The doctor spent 2 seconds looking in her eyes. He said "Well, her eyes are bloodshot but since there isn't any yucky gunk in them then it is just allergies". Why though? Why is it just allergies? Because her eyes are red? Nothing else points to allergies. I started to get really irritated. I reminded him I've been giving her allergy medicine and that I've been putting allergy drops in her eyes and it has made no difference. I reminded him that she has lyme disease and questioned if it could be something more related to the lyme. He said no and that he was sure it's allergies. He gave us different eye drops to try and that's it.

I'm just not buying it. I really really don't think it is allergies. I feel so helpless. I am going to try these eye drops for a couple days and see if it makes a difference. If it doesn't I'm just going to take Alexis right to an opthamologist. I don't want to wait too long in case it is something more.

Alexis has to read a book and do a book report on it. How in the world is she supposed to read an entire book when she can't stop blinking. I'm not even exaggerating - she doesn't stop blinking. If any of you see her you will notice it right away. She hasn't been able to read much this week. Yesterday she was stressed out because some of her friends in her class already finished the book. She can barely read a page. Last night my mom came over to read with Lex and my mom ended up having to read to her. I know that's not good for Alexis but we have no other option right now. Alexis has a hard enough time when it comes to reading and comprehending things right now. This just adds one more challenge to the list for her.

This just makes me really frustrated. I wish Alexis was seeing a Lyme Disease Specialist at times like this because they would be more familiar with the connection between lyme disease and the effects it can have on the eye. It makes me crazy that all the doctors aren't on the same page when it comes to lyme disease. Why can't they be? Why can't they just figure this disease out, change the regulations that go along with it and get all these doctors up to speed.

On another note - if I am being too dramatic and it is just allergies doing this to my little girl then I will be very happy. I would much rather Alexis have allergies than find out that the lyme disease has done something else to her. I am so sick of different things happening to her.

If it's not one thing, it's another.

A few steps forwards . . .

Although Alexis isn't feeling 100% yet, she is feeling much better. Yesterday morning she was feeling great and excited to go back to school for the first time since the PICC line was in. I wrapped her arm with gauze to protect it from getting dirty and getting infected.

About half way through the school day, the nurse called me. Alexis was feeling horrible. This time it was her head. She said her head hurt so much that the nurse had to turn off all the lights for her in the nurse's office. She laid there with her eyes shut until I got there. When I first saw Lex I thought she might have a sinus infection or something. Her eyes looked red and around them was all puffy and swollen. I asked Alexis if her face was sore or if it hurt when I touched it - she said "no". She kept saying her head was just killing her, worse than ever before.

When we got home Alexis laid right down on the couch. She asked me to make it as dark as I could in the living room. Luckily, it was a dark and gloomy day so it wasn't too hard to keep it dark for her. I asked her if she wanted me to turn the tv on for her but she said she couldn't watch it anyway because it would just hurt more.

I gave her some motrin and I had her drink lots of water. She spent the rest of the afternoon on the couch but with time she was feeling better. She was supposed to have a softball game but it got canceled because of the rain. It's weird how her games always get canceled on days that she is feeling really awful. Lucky for her though - she got to take it easy the rest of the night.

Dr S did say if Alexis' headaches didn't get any better that she would have to go see Dr T again - he is her neurologist. They will come up with a plan on getting those headaches better. I'm going to give it a little more time to get better since she just finished her medicine. If she keeps getting migraines like that though I will make an appointment with Dr T soon.

Today has been much better. Alexis has felt pretty good all day. Scottie and I got to go to Lex's school to have lunch with her. She didn't know Scottie was coming too so it was a nice surprise. We had a good time. I was glad I got to see Alexis half way through her day because I got to make sure she was feeling okay. She made it through the school day today and felt good all evening too. Unfortunately, it's still raining so tonight's softball game got canceled too. Alexis went with Scottie to watch him play in his softball game. I stayed home with our little girls so Scottie and Lex could have some Daddy - Daughter time. They had a blast.

When they got home tonight Alexis' eyes were really red and swollen again. Now I'm thinking it might even be allergies. Alexis hasn't ever had them but I've had them since I was about her age. Just adds to the list of things my girl has to deal with. I gave her some children's allegra allergy medicine and put some drops in her eyes to relieve the itchiness. Hopefully it doesn't get any worse than it was tonight.

Usually this rainy weather flares up Alexis' arthritis pains. The past two days it hasn't though. That could be a good sign. Now that I think about it - Alexis was having the joint pain just about every day before she started the IV antibiotics. It is no where near that often now. So although she has been dealing with a lot of other symptoms and problems - this could mean she is really recovering from the Lyme Disease. Please continue to pray for my girl!

The Last Out

Before bed last night I put cream on Alexis' arm and wrapped it up in gauze pads. When we took it off this morning Lex's arm looked much better than it did yesterday. It was definitely starting to heal. I can't wait until Alexis doesn't have to worry about that arm at all anymore. We left it open all day to air out but before Lex's game tonight I put neosporin on it and wrapped it back up. She didn't like the way the hydro-cortisone made it feel last night. The neosporin seemed to work much better.

Alexis couldn't wait for this game tonight. It was the first game she would play since the PICC line has been taken out. It was really her first time playing in a while because of how crumby she's felt the past couple weeks. She was so excited that she put her uniform on 2 hours before we had to leave! As the game started, Alexis was still feeling good. It was such a sigh of relief. I just wanted her to be able to make it through this game and have fun doing it.

Alexis got up to bat for the first time. She looked so confident standing at that plate. I was so nervous for her but she didn't have a worry in the world. After a couple pitches, Alexis hit the ball. It was such an amazing hit. I couldn't be more proud of my little girl. You wouldn't have been able to tell she barely played at all the past 4 weeks. It was such a great way for her to get back into the game.

Alexis felt good throughout the rest of the game and her arm didn't bother her at all. I was so relieved. It was great to see her play, but even better to see her play an entire game. I was so proud of her. Unfortunately, the ending to this game wasn't the greatest for Alexis. Her team was losing 1-0. There were 2 outs and the bases were loaded. Alexis was up at bat. There were a couple ways this could go - but she struck out. She was so upset. I knew how disappointed she was going to be. No girl wants to make that last out for their team - but it happens to them all. Her teammates were even reminding her of times it happened to them. Alexis felt like she ruined it for her team though. I know she didn't ruin it and I kept telling her that. She didn't want to hear it. I also kept reminding her about that amazing hit she had but she was stuck on beating herself up.

When we got home all she wanted to do was go to sleep. When I unwrapped her arm I noticed it was still looking much better. I'm so glad it getting better so quickly. I think I'm going to wrap it up tomorrow for school just to protect it from getting dirty and all but she shouldn't have to do this for too much longer. Within minutes of laying down Alexis passed out. Although she thought the game was the worst thing in the world, I am still so excited and proud of her. So much good came out of that game. I'm pretty sure she will realize it tomorrow when she isn't so focused on being that last out. Plus, she has a game tomorrow and a couple more this week alone so she will be able to make up for it! =) 

And the PICC is out!

Today was the day - Alexis got her PICC line taken out!

Lex woke up feeling okay but was very nervous. Luckily, Scottie didn't have work this morning so he was home and my mom was able to come over for Alexis. I needed them here for her because I knew there was a pretty good chance that I would feel nauseous or light-headed. For some reason it happened every time Alexis got her dressing changed. I think I just get myself all worked up because I can't stand to see her in pain like that.

When the nurse got here Alexis got herself really worked up. She was crying and saying she didn't even want the nurse to take the dressing off. I don't blame her - she still has that rash and the blisters so she knew taking the dressing off was going to irritate it even more. Lex also said she didn't want the PICC line taken out. She was so scared. She thought it was going to hurt. She wouldn't even let the nurse go near her arm. She kept saying "I want to just keep it in forever". My mom had to hold Alexis and her arm so the nurse could get to it. At this point we really just wanted it over with. Alexis lost it when the dressing was coming off but within seconds of the dressing being off, the PICC line was out. Lex had no idea it was even out yet. We told her it was over with so she could calm down and she said "ohh, really?". That made me feel a little better because I knew that she was crying because she was scared and not because she was in pain.

Once it was out the nurse cleaned it up a lot and covered the actual site where the line went into Lex's arm. The rest of her arm looked pretty yucky still. Luckily, the rash and blisters didn't get worse than it was on Thursday night. I am so glad she can leave it open now so it can really start to heal.

Although the whole thing was pretty traumatizing to Alexis, it was nothing a big bowl of ice cream couldn't fix! This afternoon Lex's friend came over and then we all went to watch the older girl's softball game. Lex was running around and playing like any other kid. She was feeling okay and her arm wasn't bothering her too much. A couple times I caught her trying to scratch it so I knew it was a little itchy still.

When we got home I cleaned it up really well with alcohol swabs. Then I put hydro-cortisone cream on it to help with the itching. When she was ready to go to sleep I covered it with gauze pads to protect it for the night. Within a couple days her arm should be completely back to normal.

Alexis really loved not having to do the IV tonight. Now that she is finished we have to do a lot of waiting. We wait to make sure the side affects from the medication go away. We wait the two weeks  to check her white blood cell count again. We wait to see how her lyme disease symptoms respond to the treatment. I am praying this has worked and that she never has to go through anything like this again. It's too much for a little girl to deal with.

I just want to thank everyone who has been there for us all throughout all of this. This would have been so much harder without the support from our family, friends, Lex's teachers and coaches, and from all of you who have taken the time out to pray for Alexis or read this blog. It's overwhelming how many people really care about my little girl. It means more to me than anyone could imagine.
So, THANK YOU ALL!

Now we close this chapter of Alexis' journey and start the next...

"All for you, Lexi!"

Today Alexis felt pretty good all morning. She went to school and couldn't wait for us to come see her sing at her Spring Concert.

While Alexis was at school, Dr S called us and said he had Lex's lab results from this week. Her white blood cell count dropped dramatically in just a week. He thinks (and hopes) the antibiotics caused it to happen but there's no way to know right now. He wants to test her again once she has been off the antibiotics for 2 weeks. In the meantime, Dr S told us to be very careful with her because she could be more prone to getting sick right now. So we are keeping an extra close eye on her. He also said that as she comes off of this medication her body is going to go through a lot of changes. This could also make her feel crumby.

This afternoon Scottie, Kaelynn, Makenzie and I headed over to Lex's school for her concert. Alexis looked like she was having so much fun. She smiled at me the entire time. I couldn't wait to hear her solo! Before the song starts the soloists are supposed to walk up on stage by the microphones. A couple songs into it I knew it was Lex's song because I had a copy of the program. There were four girls with solos for this song, so all four girl were supposed to walk up on the stage right before the song starts. I saw the other three girls go up, but Alexis didn't move. I was a little confused. Was she not feeling well? Was she too nervous? Did she ask the music teacher if she could not do it? After a couple minutes of complete silence, her music teacher prompted her to go up on the stage. Alexis forgot. She completely forgot to go up there. Most parents might think to themselves - "Ahh, kids forget everything - it's no big deal". Not my Alexis though. She doesn't forget things like that. She is a cheerleader - a very good cheerleader. She has always been so on top of knowing where she has to be and when. She knows to look out for those certain ques and things like that. It was very out of character for Alexis to just forget to go up on stage. Anyone who really knows Alexis knows what I mean. So while others were watching and not thinking of it - I felt so sad to see that the Lyme Disease has affected her in one more way. The neurological lyme disease has taken over my daughter's life and it's so frustrating. I feel like Alexis is changing into a completely different little girl.

Aside from forgetting to go up on stage, Alexis did an amazing job. The concert was beautiful and a lot of fun. We took Lex out of school after the concert because the day was basically over with anyways. Lex came home and rested before her softball game. She had been looking forward to this game all week. She knew she was having a good week and really felt she would be able to play. When we got to the field I wrapped up Alexis' arm and she started throwing the ball with one of her closest friends and teammate. She was feeling great and so excited to play.

About a half hour before the game was supposed to start Lex came walking over to the side where I was sitting. She had a scared look on her face so I immediately  asked her what was wrong. She was holding her chest and saying she couldn't breathe. I told her to stop walking and just sit as I ran over to her. Luckily, this softball team is more of a family. I didn't even hesitate to leave Makenzie and Kaelynn while I ran over to Alexis because I knew the other parents would help me with them - that's exactly what they did.

Alexis was very short of breath and said it hurt when she would breathe in. She doesn't have asthma and this has never happened before. I didn't know what to make of it all and I honestly didn't know what to do. When this started she wasn't running around or doing much of anything. She was standing in a line waiting for her turn to catch the ball. It was so weird that this came out of no where. As we sat there together the pains in her chest would come and go, and out of no where she would become short of breath again. I was getting scared and I only gave it minutes to get better before I was going to take her to the emergency room.

The game was about to start so there was no way Alexis could play. I ended up taking her out of the dugout and bringing her over by me and the other parents to sit and relax. The pains in her chest were lightening up until they finally went away completely. Again, this whole thing probably lasted about 20 minutes but it really did feel like a lifetime. I hate seeing her under any kind of stress. Lex ended up not playing the whole game. Even after she felt better she didn't want to play because she was afraid the pains would come back again. That was perfectly fine with me because I was scared too.

In the beginning of the game and in between each inning the girls all stand together in a circle while Coach Mike talks to them. When he is done the girls always say "One, Two, Three - Angels! Angels! Angels!" During this game, the girls yelled "One, Two, Three - Angels! Angels! Angels! All For You, Lexi!!!". When I heard it the first time I wasn't sure I heard them right. Then when they did it a second time I knew that's what they were saying. It completely melted my heart. Not only do we have such a great support system as a whole, but Alexis has an amazing support system within her own peers. She is one lucky little girl.

Throughout the game and the rest of the night the chest pains never came back. Thank God. I wasn't sure what to think of it. I'm still not sure what to think of it. I will be very happy if that never happens again but I am going to continue to keep an extra close eye on her.

We gave Alexis her very last dose of intravenous Rocephin. When her IV beeped, telling us it was done, Alexis started yelling and cheering! It was over with. After 28 days of sitting there every night for 40 minutes while she received her medicine, it was finally over with. To me the 4 weeks went by really fast but I don't think Alexis would say the same. It was a rough 4 weeks for her but she did it. I couldn't be more proud of her. The way she has handled all of this is simply amazing.

In the morning Alexis' nurse will be coming to our house to take out the PICC line. It can't come soon enough! 

Reaction

Alexis has made it through 3 full school days in a row. Not only has she made it through the school days, but she is feeling so much better than she was last week. She still gets the stomach pains, but they come and go again (as opposed to just staying all day and night). She finally finished making up the testing that she missed last week and all the rest of the work that she missed. She also got to play at softball practice tonight. Towards the end she started getting some stomach pains but after resting for a few minutes she was right back out there finishing up practice. I am so proud of her. Nothing is going to stop this little girl. =)

Unfortunately, it's not all good news tonight. Remember those bumps on Lex's arm by the PICC line cover? Well, they got worse. Tonight when I took her cover off to start her IV, I noticed that there were bumps under the PICC line's dressing. In the bottom corner there was a little area that wasn't sticking anymore so I lifted it up a tiny bit and I saw that they were blisters under there. They were really red, big (bigger than the 'little bumps' that I noticed Tuesday night) and I just didn't like the way they look. Immediately I called my mom - like I do any time I question anything in life. She said she would come over and look at it. At the same time she called my aunt who is a nurse. She was going to head over too since she has more experience and knowledge in this than my mom and me. They felt it was some kind of reaction but they weren't sure if it would be best to keep the dressing on or change it. So we tried to call Alexis' nurse. I wasn't able to get in touch with her so I talked to the nurse who was on-call tonight. She said it was hard to say what we should do without seeing Lex's arm so she wanted to come out to our house.

When the nurse got here she felt it was a reaction to the dressing that was just put on. Lex's arm was a little swollen, red, very itchy with the bumps and blisters on it. The nurse decided to take this dressing off and put on a different kind of dressing. Alexis hates having the dressings taken off to begin with - having a bunch of blisters under the "taped-on dressing" made it a hundred times worse. The tape ripped open the blisters. When it all was taken off I could see her whole arm. It looked awful - so much worse than I originally thought. Although Alexis was in a lot of pain from having the dressing changed, I was glad I didn't put this off until tomorrow because I can't imagine how many more blisters there would have been under there. Once it all was off the nurse cleaned the area really well and then put a new dressing on it. Although this one is different, it's still on all those blisters. So when Alexis has to get this taken off on Saturday it's going to do the same thing. I wish she could just leave it open and let it air out.

Tomorrow (Friday) night I will be giving Alexis her last dose of Rocephin through the PICC line. Her nurse is scheduled to come Saturday morning to have the line taken out. The nurse tonight told me if this reaction gets any worse tomorrow to call the doctor and see if we can have the PICC line taken out tomorrow instead of on Saturday. Either way it's so close. I can't wait for this all to be over with. This is too much for any 9 year old to be going through.

Alexis always wears a cover over the PICC line. I felt so bad putting anything on it tonight - knowing how itchy and irritated her arm is. Luckily I still had a cover that the hospital gave me when the PICC line was first put in. This one is like netting so it's open and a lot of air can get through. I put that one on her for tonight and I might just let her wear that to school tomorrow too. I feel that it doesn't protect her PICC line as well but it does hold everything in place like it needs to.

Tomorrow Alexis has a concert at her school. She is really looking forward to it - she even has a solo! I am praying she feels well enough to make it through the day again and that her arm isn't bothering her too much. I want her to just be able to enjoy herself like the rest of the kids - without having to worry about all these other extra things.

Things with the PICC line itself have gone so smoothly this whole time - It's just our luck that she would have a bad reaction the last week of her treatment.

Finally!

Finally! Alexis had a pretty good day today. It wasn't perfect, but good enough for all of us.

The nurse came this morning, like she has every Tuesday morning since the PICC line was put in. She had to do Lex's blood work and change the dressing on her PICC line. For those who haven't been reading my posts - Alexis doesn't usually do well with this. She gets very nauseous and light-headed. Every Tuesday since the PICC line was put in she had to stay home from school. This morning was different. Before the nurse even got to our house Alexis was feeling dizzy and light-headed. I think she was just getting herself really worked up because she knew what was coming. By the time the nurse got here Lex was back to feeling okay. Alexis sat there so calmly. She barely made a peep when the old dressing was being pulled off of her - one of her least favorite things to sit through. She stayed calm, got every thing done and was wanting to go to school. I felt such a sigh of relief. She is finally getting used to the whole thing and this is the last Tuesday she will have to go through all of that - go figure.

I brought Alexis to school this morning. She had to do testing this morning to make up one of the tests she missed last week. Her teacher told me they will work around her schedule and how she is feeling. I'm so glad. Our main goal was for Alexis to make it through testing this morning. I told her I would be home all day with my phone by my side in case she needed to come home. Usually the school calls for me to come get her at about 11:00am - so from 11:00 on I didn't put my phone down. I waited for that phone to ring. Soon it was 1:00pm and the phone still didn't ring. I was shocked, happy and worried all mixed into one. I hate being away from her for so long but I do trust that she will tell her teacher if she does start feeling really crumby. Before I knew it, it was 3:00pm and almost time for me to head over to her school to pick her up. She made it through the day - the entire school day. I'm so happy for her. I know how bad she's been wanting to stay all day. She has been missing out on a lot. When I picked Alexis up this afternoon she looked good and said she felt okay. She said there were a couple times throughout the day when she wasn't feeling too good but it never got bad enough to go to the nurse. She was so excited to make it through the whole day - especially since our goal was for to only stay a couple hours in the morning.

This afternoon my sister and nephew were over hanging out with us. It was so nice seeing Alexis play with her little cousin and little sister like an average kid should. The last couple times my nephew was over Lex was stuck laying on the couch in pain. I was finally able to see her smile and have fun. She needed that. I even let her take a break from her homework to just play because she was feeling so good.

Unfortunately, Alexis' softball practice was canceled tonight because of the rain. Lex said "Ohh man, I was so ready to play today". Hopefully these good days keep coming.

Tonight after her IV was finished I was putting the cover back onto her arm and I noticed there were bumps on her arm near the PICC line dressing. When I looked closer I noticed there are a lot of them, they are red and big. It's definitely a rash and it wasn't there this morning. I looked all over the body to see if they were anywhere else but they weren't. She doesn't have a fever or feel yucky at all. I'm hoping it's just a heat rash or something little. I took pictures of it and I'll check it again in the morning to see if there's any changes. Let's pray it was nothing major and gone by the morning.

Alexis is now sleeping and we can officially say it was a GOOD DAY! I'm so relieved. My mom always calls after work to see how Alexis' day is going. It was so nice to finally be able to say she stayed in school ALL day and has been feeling pretty good all day. Alexis needed this. I needed this. Scottie needed this. My mom needed this. We all were getting a little overwhelmed with the amount of bad days Alexis was having.

Quick Update

It's Monday. A new week and Alexis' last week of treatment. Last week she only made it through a total of 4 hours of school, divided by two different days. She missed 3 days of testing that she needs to make up this week. We were praying she would be feeling a little better by now.

Lex was feeling okay this morning and went to school. I had to take Scottie somewhere that was a half an hour away. I was so nervous about being so far away from Alexis. It was actually giving me pretty bad anxiety. I didn't know what I would do if the school called and I needed to get her. Since the thought was already in my mind I was thinking about my options and what I would do if the school did call. A little after 11:00am my phone did ring and it was the school. I had to go get Alexis. I called my sister and luckily she was in town and able to go grab her for me. I had a feeling this would happen but I was praying Lex would have made it a little longer in school today.

Once again it was the stomach pains and she had a very bad headache. This afternoon she had an appointment with Dr S. He said all of her lab work is still coming back okay. Other than the headaches and stomach pains everything is going okay. Before Lex started her treatment she was getting joint pain just about every day. That has gotten better. It's a huge sigh of relief knowing that this could actually be working. Dr S wants Alexis to go back to her neurologist for her headaches. He thinks she should try a laxative for the constipation since we have tried everything else. If that doesn't help, he wants her to see a gastroenterologist. Dr S did confirm that Alexis will be finished with this treatment on Friday - only 4 days away. She was so happy to hear that. We are all really happy she has made it through the full treatment. It hasn't been easy but she did it. I am so proud of my girl.

I'm going to keep tonight's post short & sweet. All in all, Alexis had an okay day. It was better than the days she had last week. I'm praying she can get to school tomorrow so she can make up some of her testing.

Let's pray this week goes fast for my Alexis!

My Flower

The past few days have been very hectic, I have some catching up to do...

On Thursday Alexis was in so much pain so I kept her home from school. As soon as the doctor's office opened I called them because I realized this wasn't getting any better - only worse. Her infectious disease doctor, Dr S (who is the doctor who is treating her on the IV rocephin) said to call her pediatrician or take her to the ER if it was severe. I had a feeling there wasn't much that her pediatrician would be able to do so I took her to the ER. These are strong pains she was having in the upper right side of her stomach. For those who aren't familiar, there is an abnormally large amount of lyme disease patients who end up having to have their gallbladder removed. Not only was that in my mind, I know her being on such a strong dose of IV rocephin could damage other organs so I didn't want to risk this anymore. I needed to know that everything was okay. I couldn't stand knowing that something really bad could be happening to her and I was just putting it off. I had a feeling her pediatrician would have sent her for more tests at the hospital anyways.

We rushed over there - Alexis, my two little girls & myself. Luckily, my mom was able to leave work and meet us at the hospital. My mom plays a HUGE role is Alexis' life. They have a very strong bond between them and sometimes Alexis' just needs her "Grandma-Grandma" to comfort her. Getting Lex to the hospital was horrible. She was in more pain than she's ever been before. She couldn't walk to the car, cried the whole way to the hospital and could barely walk into the hospital once we got there. When we got into the waiting room Lex just laid there on a chair curled up in a ball. The pains in her stomach were consistent and worse than ever before.

It wasn't long before we were in a room and with the doctor. The ER doctor was very shocked to find out that Alexis is getting 2 grams of Rocephin through her IV a day. He said that is a lot for a little girl her size. A few people have said the same thing to me now. He wasn't surprised to see the side affects she was having from it though. He felt everything was related to the antibiotics and that all should be okay. He was going to do her blood work, take a urine same and do x-rays to check everything out.

When Alexis gets her blood taken every week they take it right from her PICC line. The ER doctor didn't want to do that though. He wanted to do it from the other arm and he decided he would put another IV in that arm also to give her some fluids. Alexis wasn't too thrilled about this. You would think she would be used to needles and IV's - she's not. She still hates it with a passion and puts up a fight every time. She fought this day worse than ever before. She was kicking and screaming; it was just awful. I thank God my mom was there, she stayed up by Alexis's head, leaning over her chest, holding her down but making Lex think she was just trying to hug her. I had to hold down her knees and lean over her legs. While 2 other nurses helped hold her down and the doctor put in the IV and took the blood. I'm so glad Alexis couldn't see me because I cried. I tried so hard to hold it in but I couldn't. She was so scared and worked up. I couldn't take seeing her like that. My heart was completely broken. This all lasted only a couple minutes but it seemed like an hour.

After the IV was in Alexis went to get her x-rays done. My mom went with her so I could take a minute to get myself together. I really didn't want Lex to see me upset. After the x-rays, the worst of it was done. Now we just had to wait for results. My mom had to get back to work but she took Kaelynn for me so it was one less person I had to entertain. While we were waiting Alexis got a very special visitor - her softball coach & good friend, Mike. She was soo happy he came to see her. She kept saying "I can't believe he left work to come see me!". It really helped lift her spirits, more than he knows. She needed that. She needed to smile. It had been a rough morning so to see her smile just melted my heart.

Soon after Mike left the doctor came back in with the results. He said all of her blood work came back okay. Her liver was fine. He was never worried about the gallbladder to begin with. And he knew at this point that it most likely had nothing to do with her organs. I felt a huge sigh of relief but I still really wanted to know what it was. After waiting a little longer the doctor came back and told us that Alexis is constipated, very constipated. I told him I didn't understand how that was even possible because she's been going to the bathroom every day - he said it's still possible. He said she is just not going enough and is very backed up. This is also very common from the medication she is on. On top of that, she was dehydrated. So he wanted her to relax and finish the bag of fluids before leaving the hospital. I was relieved. I was so glad we finally knew what was causing these severe pains and even more glad that it wasn't something more serious going on with her organs.

The doctor said to try anything other than laxatives first. So we went and bought big jugs of apple juice, prune juice, fiber bars, and fiber chewable pills. Let's just say this all happened on Thursday, it's now Sunday night and NOTHING is working. Alexis took a tiny sip of the prune juice and refuses to go near it again. She will drink apple juice and water but not enough. She doesn't understand that she needs to be drinking an uncomfortable amount right now for it to help her. When she drinks a lot she feels more bloated and it causes more stomach pains so she stops herself. Tomorrow Lex has an appointment with Dr S so I'm going to see if he has any other ideas. the

Alexis was diagnosed with Lyme Disease in September 2011, which was 9 months ago. On Thursday night Alexis said to me "Why did this happen to me Mommy?" for the very first time. I knew she had to be thinking it, but this was the first time she ever said it out loud. It broke my heart. It took everything in me to not break down right in front of her. I gave her the biggest hug ever (not wanting to let go because I didn't want her to see my eyes filling up) and I said to her that God knew how strong she is and that she could handle all of this. Modestly, she said to me "I don't think I'm that strong". So I sat there and gave her about 20 examples of how she is the strongest little girl I know and she finally agreed that she is one tough cookie! =)

Lex wasn't feeling any better on Friday so I kept her home from school again. I felt that since we knew what was making her feel so crumby that we could spend Friday and the weekend getting her better. She spent these days resting and drinking lots of water & apple juice.

Today was Mother's Day. It was a wonderful Mother's Day at that. In the morning Lex felt pretty awful. It was hard for her to even stand up and get herself dressed. We went over to my mom's house for breakfast with our whole family. Lex spent most of the time laying in my mom's bed. By the afternoon she was feeling much better. Scottie and I took Alexis and Kaelynn to see a show - Max and Ruby - while Makenzie spent the afternoon with Grandma at her Aunt Kacie's soccer game. Lex felt okay during most of the show. A few times I noticed she was uncomfortable so I just put my arm around her and held her a little closer, knowing there wasn't much else I could do for her. We ended the night by going out for dinner.

Alexis is my first daughter. I became a mother at the very young age of 14. The situation was a rough one for everyone close to me. 10 years later, I can honestly say that becoming a mother was by far THE best thing that's ever happened to me. Alexis gave me reason to become a better person and helped me understand what unconditional love really was. 10 years ago I was pregnant when my mom gave me my first Mother's Day card. I was young, scared and clueless. I had no idea I was about to receive the greatest gift God could have ever given me. Alexis changed my life - for a better.

This quote from the Disney movie Mulan reminds me so much of Alexis - 

“The flower that blooms in adversity is the rarest and most beautiful of all.” 

Alexis is my beautiful flower. I love you, Princess <3 

Alexis and her little sister, Kaelynn

Frustration

I feel like my last couple posts are full of negative things. I can't wait to be able to write about a "good day". Unfortunately, today is not that day. It was another rough one for Alexis. She was able to go to school this morning. She was feeling good and hoping to stay the full day. A little after 11:00am I got the call to come pick her up though. I felt so bad because I know how badly she wanted to stay all day. When I got to the school Lex looked miserable. She was in so much pain again, still in her stomach. She told me it was worse than yesterday. That broke my heart into pieces. I hated hearing that she was in so much pain and I wasn't there for her. I hate driving away from that school in the morning knowing I won't be there to look after her. She told me that it was hurting while she was still testing but she didn't want to stop - she wanted to just get it over with so it was one less test she would have to make up next week.

While I was at the school I talked to them about all this school she is missing. I wanted to make sure they were okay with it. I told them how she would be finished with her treatment next week and that it should get better at that point. They were very supportive and told us not to worry about it. She will have to make up the testing she is missed but other than that nothing is that important right now. I also talked to Lex's teacher today. She assured me that Lex isn't falling to far behind and that she isn't going to make Alexis do all of the work she is missing - only the important things.

So we had set a new goal - for Alexis just to get through testing the next couple mornings. I am going to plan on picking her up when she is finished. If she is feeling okay and can stay all day, great - but I will make sure I am around and ready to get her if that phone rings. Luckily, I live about 5 seconds away from the school. I'm glad I am so close to her and even more glad that I am a stay at home mom so I can be there for her within minutes. (Thank you Scottie!)

We have found that when these stomach pains come the only thing that help it is laying down. So Alexis spent pretty much the whole day laying down. When it was feeling better she still laid down just to prevent it from coming back. It's been coming and going more frequently now though.

Lex had a softball game tonight. Actually, it was a double-header. There was no way Alexis was going to miss it. She wanted to play so badly. A little while before we were supposed to be there her stomach pains started up again. They weren't the worst they have been, but they were bad. She still went but wasn't sure if she was going to play. She got a little playing time in but wasn't feeling better until the second game and by that point it was too late to play. Once again she had to watch her team from the side and it just broke my heart. I know she has to think to herself "why me" at those moments , when she is watching all of her friends out there enjoying themselves and playing the game she loves. She never says it out loud though.

I felt so frustrated sitting through these two softball games. I just wanted her to be able to play. I wanted her to feel like an average 9 year old kid again. I wanted her to not have a damn PICC line in her arm. I wanted her to not be getting such a strong dose of this medicine. I wanted to fast forward time...or rewind it to the day she got bit by that damn tick. That opens up a whole different world of emotions for me though. Why didn't she have bug spray on her that day? Why didn't I check her for ticks that night? Why didn't I ever notice the bulls-eye rash that the lyme disease causes? And the question I ask myself a hundred times a day - WHY DIDN'T THE DAMN TICK JUST BITE ME INSTEAD?!?!?

I know I said last night that I need to just accept it all, come up with a new normal for us and roll with it, but I'm having a really hard time accepting all of this. I'm full of so much anger and hatred right now. I hope I can snap out of it and pull myself together. I need Alexis to have just one good day - just one. It will give me so much hope and I'll be able to get out of this little funk I'm in.

Prayers are needed and very much appreciated.

A Glimpse of Reality

Alexis has her good days and her bad days. Recently there are more bad days than good - mainly because of the medication she is on. Today was by far one of the worst yet. I saw my little girl in more pain than she's ever been before and I just couldn't take it. Although I am dreading writing about this because I don't even want to relive this day - I feel it's important to share...

This morning Alexis' nurse came, like she does every Tuesday morning before I take Lex to school. While the nurse was taking Lex's blood work, we had her munching on crackers and sipping on juice - hoping it would prevent the dizziness and nauseousness that Lex feels every time she gets this done. It seemed to be helping. The nurse was done taking Lex's blood and started to change the dressing on her PICC line. Lex hates having this done too. She can't handle when the tape is being ripped off of her. Alexis does love it when the dressing is off though because her nurse cleans the area - which relieves a lot of the itchiness Lex has from having the same dressing on for a week.

The whole process was almost done when Lex looked at me and I just knew what was about to happen. I asked her if she felt okay - and immediately she said "no" with a painful look in her eyes. I asked her what was bothering her. She said she was starting to get dizzy and light-headed. She kept asking if we were done yet because she needed to go lay down. Soon enough I was walking her over to our couch to lay her down. At that point she was saying she was so dizzy that she couldn't see clearly and that she was starting to get a headache. I laid her down, got her a cold towel for her head and just sat next to her praying this would all pass quickly. Soon she was telling me her vision kept getting blurry. There was a bag on in the living room that she could see and she kept saying the words on that bag just kept looking like a long black rectangle. While she was laying down the stomach pains started up. So far it seemed like a typical Tuesday morning and I figured within an hour or so Lex would be feeling okay. So the nurse finished up and headed out.

After about a half hour Alexis had to go to the bathroom. As she stood up, the pain in her stomach become severe. She had to lay right back down. She was crying saying it felt like someone was stabbing her in her stomach. At one point she was holding her knees up to her belly, rocking back and forth, crying to me "Mommy, make it stop, make it stop!!". It took everything in me to not lose it at that moment. I knew there was absolutely nothing I could do to make her feel better or take this pain away from her. I couldn't cry though. How could I let her see how scared I really was - then she would be even more hysterical. I had to keep my cool, but the lord knows it wasn't easy. I was minutes away from taking Alexis to the hospital when things started to calm down a little. As she laid on the couch, she didn't want to watch tv because she knew it would make her head hurt more than it already was. We just sat there for a while together as I held her and rubbed her back. Soon she was back to a manageable state, but let me tell you - this whole episode seemed like it lasted a lifetime.

Today wasn't just a rough day for Alexis, it was really hard for me too. I got a real glimpse of reality. I mentioned before that Alexis is my oldest of 3 daughters. I may not have mentioned that I am a stay-at-home-mom right now though. While all of this was happening to Alexis, I still had two more kids to be taking care of. Kaelynn, my 3 year old could see what was going on and just kinda sat to the side worried about her big sister. She would randomly rub her back and say "I hope you feel better, Sissy". My 8 month old wasn't so easy during this time though. When this was going on it was the same time that I feed Makenzie and put her down for her first nap. So she was hungry and exhausted. When Alexis' pains got really bad I had to put Makenzie down on the floor. I quickly put a couple toys by her but she wanted nothing to do with them. So she screamed for her Mommy, like any 8 month old, hungry and tired baby would do. So not only was Alexis crying and in pain, I had Makenzie on the floor screaming for me. I was a little overwhelmed, to say the least. When Alexis' pains got manageable I sat on the couch with Lex laying over the ends of my legs, and Makenzie in my arms while I breastfed her and hoped that she fell asleep at the same time. I felt like I needed to duplicate myself. How in the world to parents with 5, 7 or 10 kids do it?! Those are some strong willed mothers!

So I realized that even though Alexis is sick, the world around us doesn't stop. I still have to take care of Makenzie. I still have to make time to play with Kaelynn so she doesn't feel left out. I still need to cook, clean, do the grocery shopping, run errands, ect. And those are just the average things. I still have a lot of things to deal with that are not so average. These problems and challenges don't just go away because Alexis is sick. I wish that was the case. I wish I could spend all of my time focusing on getting her better but that is impossible. I have to balance many different things all at once and it's not so easy. One of these days I just might hit my breaking point - but when that happens, I know I have an extremely strong support system standing around me ready to pick me back up to my feet. My mom, cousin and sisters keep me sane. The rest of my family would be there for me at the drop of a dime and I am convinced that for once in my life I finally have the greatest friends a person could ask for. I truly feel blessed.

Alexis ended up staying home from school today, even though she had to miss testing. She spent the whole day laying down. She didn't get pains that bad again at all today. Thank God. Today made me realize that life has to go on, and that I can't be stuck in this moment. I need to find a new "normal" for us and roll with it. I need to take care of myself so I can continue taking care of my daughters. Although today wasn't the greatest day, it was a big eye-opener for me.

* My beautiful little girls - Alexis, Kaelynn & Makenzie *