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!