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 *

The Bitter Sweet

Today was a bitter sweet day for Alexis, in more ways than one. She did make it through testing at school, and she actually said it wasn't as bad as she expected. Hopefully that will help take away some of the nerves she has for the rest of the week. When I picked her up for her doctor's appointment she said she was starting to feel crumby but she knew I was going to be there soon so she just dealt with it until I got there.

We spent a lot of time with her doctor today. He was concerned with how she's been feeling. He wasn't expecting Alexis to be feeling much better, but he also wasn't expecting her to be feeling worse. He said it could be the medicine she's on doing this but there is no way to be sure until she is no longer taking it. So our options are to have her stop taking it now or to finish out the last 2 weeks of treatment. He strongly recommends trying to finish the full 4 weeks but if she can make it to at least 3 weeks it will be very beneficial. We are hoping and praying she can get through all 4 weeks though.

One of the bigger concerns Dr S has is with the stomach pains Alexis is experiencing. The antibiotics she is on can cause problems with the liver. When he was examining her today every time he got near this one spot in her stomach she would cringe and be in so much pain. Every week she has been getting blood work done and everything is coming out okay with her liver. He is going to keep an extra close eye on it now though.

He did a series of blood pressure tests on Alexis also. He took it while she was laying down, then sitting up and lastly while she was standing. Her blood pressure went up more than it should have when she went from laying down to sitting up. I'm not going to lie - I don't know exactly what this means but I know he is going to do this test again next week and also keep monitoring it. 

Dr S also wasn't very happy that Lex is getting frequent migraines that are worse than before she started her treatment. He is going to talk to her neurologist about this but he did a couple things himself too. One of the things he did was shine a light into Lex's eyes. After he did that I could tell something was wrong with her. I kept asking her if she was okay and what was wrong - she kept saying "nothing". Dr S even asked her at one point if she was okay and she said yes. The second we walked out of his office she told me her head was killing her. I knew something was wrong. Why wouldn't she just say it when she was in there? It makes me so crazy that she is afraid of telling people when she is in pain.

About a week ago I was doing Alexis' hair and I found 2 red rings on her head - about the size of a pea. I showed him them and he was a little baffled as to what they were too. He said he is going to document it and that it may end up helping us in the future. I would have liked to be able to know exactly what it is but at least it was nothing I needed to be too concerned about.

Dr S told us that Alexis' MRI came back good. That brings for a little more of that bitter sweet feeling. I'm soooo glad it was okay, but this is going to make things a little more difficult with our insurance company. I will get into that more in the future though. I was hoping the MRI would give us a clear insight to Alexis' neurological symptoms.

It may seem like we didn't get much out of the doctor's appointment but we weren't expecting to. We just wanted to check up on Alexis' progression and see where she is at. She has another appointment next Monday and Dr S will do the same thing. Eventually he will be able to piece this all together and see what kind of progress Lex is making while on these antibiotics.



Homework. Such a tough time of our day. If you read "Alexis' Story" then you know that school is something Alexis always excelled in. School came naturally to her. She has always been good at it and always really enjoyed it. That is not the case anymore though. I dread when Alexis sits down at the table to do her homework. Not only does it take her so long to complete, she gets so stressed out that it makes her physically sick. Today was no different. She sat down at the dining room table to do her homework. She was so excited that she only had one piece of homework tonight (it's usually a lot more than that). Tonight was science. She had to read a paper, answer a few multiple choice questions and one open ended discussion question. Sounds simple enough, right? Not for Alexis. She has such a hard time understanding anything she reads now-a-days. She can read something over and over for an hour and still have no idea what she just read. All the answers to her questions were very clearly stated on the page she had to read, but she just didn't get it. She asked for help, and she was even able to tell me the sentence that the answer was in, but she had no idea how to come up with the answer. She started working on the discussion question. At this point I walked away. Before I knew it Scottie was yelling at her to stop pulling her hair out of her head. I knew she needed help again - but she hates asking. I went back in there and she was practically in tears. She was so lost. I helped her, explaining it as best as I could without giving her the answer and she just got so frustrated with me. She kept telling me she doesn't understand and that how I am explaining it makes no sense to her. She started to sweat and within minutes she was dizzy and nauseous. She had to go lay down and take a break for a little while. She was able to calm down, eat dinner then we went back to the homework. This time I explained everything exactly the same as I was early, and she got it.

Something that would have seemed so simple just a couple months ago is almost impossible for her now. A little science paper that should have taken minutes, took her over an hour to complete. Tonight was one of the better nights too. Last week Scottie found her banging her head on the table. She gets so stressed and so frustrated with herself that she can't handle it. It breaks my heart into a million pieces. I almost lost it right in front of her tonight. Luckily, I had somewhere to go right after all this happened and it was a 30 minute drive. When I was in the car by myself I just lost it. I am so angry and so frustrated. I can't stand seeing what she is going through. I would do anything to take all of this away from her. She is too innocent and too sweet to be so stressed out.

Tonight I talked to my mom about Alexis' homework struggle. She brought to my attention that if homework is this stressful to Alexis, then work in school may be doing the exact same thing. Which may be why Lex can't seem to make it through a full school day. Homework is such a stressful time for Alexis - I can't stand thinking that she may be experiencing that for hours straight during the school day. I need to do something. I need to call her teacher tomorrow. I need to make sure she isn't getting this stressed out all day long. My heart is broken.

Tomorrow morning Alexis' nurse will be coming to change the dressing on her PICC line and do her blood work. Every time she does this Alexis gets very sick. I'm praying she doesn't tomorrow because she has testing and I would hate for her to miss it. Extra prayers are needed tonight, please!

Softball, Softball, Softball

It's been a busy couple of days. Alexis did make it through the school day Friday. I'm so glad but I was so worried about her all day. I really hate being away from her. There have been too many times when she is in pain and too shy to tell the person she is with. I feel like I need to be there 24 hours a day. No one knows my little girl better than me. I can tell if she is under any kind of stress just by looking into her eyes - even if she's trying to hide it. I just have to accept that I can't always be there though, and I need to trust the other people in our life to watch after her for me.

This weekend Alexis had a softball tournament. Her team had one game Friday night, 2 games on Saturday and one more game this morning. Alexis has been able to play. In between games yesterday her ankle and leg started bothering her. One of our very prepared friends had tylenol on them (I know, something I should probably never leave the house without). It helped Lex a lot. Our friends also had the idea of trying icy hot on her leg, so we did. By the time her second game started she was well enough to play again. I always tell her not to hesitate to sit out if she needs to though.

A little while ago we were all relaxing, watching tv. Alexis was waiting for her IV to finish so she could get to sleep. As we laid around on the couch watching one of the girl's shows, Lex said out of no where "I really love softball". I love that she is so passionate about something. Long tournament weekends like this can get a little overwhelming for me when you have a toddler and a baby, so hearing those words makes it all worth it.

After Lex got her PICC line put in she got a fear of being hit by the ball in her arm, understandably. Needless to say, she fell into a bit of a slump when it came to hitting. Yesterday she had a couple of great hits. Then again today. She needed that. She needed to see that there is nothing to be scared of. She needed to build her confidence back up. I am so proud of her, although I would be proud of her even if she didn't get a single hit this weekend.

Some of you may wonder why in the world we would let her play softball with a PICC line in her arm, or how it could possibly be safe. Well, I feel like softball is more therapeutic to her than anything else. It brings her to a happy place and I can't take that away from her. I always make sure her PICC line is very secure. It has it's original dressing to hold it in place, then I wrap it up with an ace bandage and lastly I put her cover over that. I am not worried about the PICC line going anywhere. My biggest concern is with her sweating, which would cause the dressing to start peeling, which ultimately would lead to it needing to be changed. The way we are taking care of that is by making sure she isn't sweating too much and airing it out when she isn't playing. Alexis already gets the dressing changed once a week. They don't want it to be more often than that because every time that dressing gets taken off she is at a higher risk of it getting infected. So call me crazy if you want to but what we are doing seems to be working - and her doctor is fully aware of everything.

Other than being exhausted from having such a long weekend, Alexis is feeling okay tonight. Right now she is laying on the couch with Kaelynn watching the end of A League of Their Own - as if she didn't get enough softball this weekend! This week she has testing in school and she is really worried about how she's going to do. I just hope she can make it through the mornings at school. Tomorrow afternoon she has an appointment with her infectious disease doctor. She hasn't seem him since the day she got the IV put in (2 weeks ago) so hopefully he says everything is going as planned. Please keep your prayers coming a little longer!

Helpless.

Alexis didn't make it to school today. She had a really rough morning. For the first couple hours she was curled up in a ball on the couch. She gets these strong pains in her stomach accompanied by really bad migraines. She has been getting daily headaches from the lyme disease but these ones are much worse. She also gets nauseous and dizzy many times throughout the day.

Alexis' nurse who comes to our house says these are all side affects from the medicine she is taking. I do believe her, but I am taking Lex to the doctor on Monday just to make sure everything is going okay. The antibiotic is called ceftriaxone, also known as rocephin. I've done a lot of research on this medicine and found that these side affects are common. It still kills me to see my little girl go through this though. I feel like Alexis is experiencing just about all of the potential side affects that go along with this antibiotic. Tomorrow will be 2 week since she started the treatment, which means she is half way done. Thank God.

I'm worried about her missing so much school. She is having a hard enough time - missing so much work is only going to make it harder. Tomorrow Alexis is supposed to take a science test. The teacher isn't giving them anything to study from, she wants them to take the test from memory. Alexis said to me "Mom, I don't think I have any memory anymore. How am I supposed to take this test?!" Like I always do - I told her to just try her hardest. As long as she does, I don't care what the grade is. I'm hoping her teacher won't make her take the test though because she has barely been at school all week. She only made it through one full day of school so far this week - and only one full day last week too. Next week she has testing so I am going to try my hardest to make sure she makes it through testing.

I feel so helpless. When she starts to feel sick there is pretty much nothing I can do to help her. Over the counter medicines don't help the migraines or stomach pains. She has to just lay down, in the dark and wait for it to go away. Putting a cold towel on her forehead and the back of her neck seems to help when she is feeling nauseous and dizzy, but that's just about it. I would do anything to take all of this away from her. I want nothing more than for Alexis to feel like an average kid again.

"She is done for the day..."

"She is done for the day..." are the words the school nurse said to me when she called me to come pick Alexis up from school today. When I got her, she said to me "Mommy, I tried to stay as long as I could but I just couldn't stay any longer". I knew she wasn't kidding. As she walked up to me in the school she looked awful. I didn't think she was going to make it to the car. I hate that she tries to stick it out so long. I wish she would go to the nurse as soon as she starts to feel yucky because it rarely ever goes away quickly. 

Since the PICC line was put in - 13 days ago - Alexis has only made it through 2 full school days. All the rest I had to either bring her late or pick her up early. Last week was a rough one. Alexis only made it through one full day of school. Monday we started the week off right - Lex stayed all day and felt okay when I picked her up.

Yesterday (Tuesday) Alexis' nurse came before school to take her blood work and change her PICC line dressing. Every time Lex gets this done she gets very sick. She gets as pale as a ghost, light-headed, dizzy and nausious. I don't know if it's from having so much blood taken or just from the anxiety of having the dressing changed but it's awful. Once the nurse was done Alexis was able to lay down for a while and go to school an hour late.


Yesterday was a big day for Alexis - she got to practice with her softball team again. She has been going to every practice and game, watching from the sideline. Every single day she begged to play again, until she realized her arm was still so sore and that she just couldn't physically do it yet. Yesterday she was up to it. We wrapped her arm up very well and let her get some practice in. She was more happy than she's been in a long time.

Naturally, I was worried the whole time and checked up on her many times throughout the practice but she did just fine. She needed that. She needed to throw that ball again with her friends and not just watch from the side.

Tonight she was supposed to have a game. Although it isn't raining right now, it did rain all day and the game was canceled. Alexis (and Scottie) aren't happy that it got canceled but I am because Alexis wasn't feeling 100% this afternoon and probably wouldn't have been able to play - meaning once again she'd have to watch from the side. Now Alexis can rest tonight and hopefully be up to practicing with her team again tomorrow.

Alexis' Story

Alexis has always been such an active little girl. She started doing competition cheerleading and playing softball when she was 4 years old. My husband, Scottie, was in the Marine Corps at the time so we lived in North Carolina. We have always been an "outside" kind of family. If Lex wasn't playing softball or cheering, we were fishing, hiking, at the beach or a park - anything that had to do with being outside.

Alexis is the oldest of three girls. She is the most amazing big sister there is. Not only for her sisters, but for me also. She has always taken such pride in helping me since the day she became a big sister 3 years ago. When our second daughter, Kaelynn, was born Alexis used to say she was scared of becoming a big sister because she didn't think she would be good at it. We assured her she would and she got the hang of it right away. In August 2011 Alexis became a big sister again to our third daughter, Makenzie. This time she wasn't scared or nervous about having a baby around - she was excited. She knew she had this "big sister" thing down pat. Once again Alexis was such a big help. She makes things like taking a shower easier on me. There are times she will sit in the bathroom and play with Makenzie while I'm showering so I'm not rushing to get out. Kaelynn and Makenzie are so lucky to have Alexis as their big sister.

While we lived in North Carolina Alexis was always an exceptional student. She went to school there from kindergarten through 2nd grade. The summer after 2nd grade we moved back to New Jersey and Lex got to join her friends from preschool in 3rd grade. It didn't take long for Alexis to get used to the move. She fit right back in with her friends - all while making new ones too. Cheerleading started the summer before 3rd grade, which helped her feel more comfortable about starting a new school that fall. We knew the NJ school system was going to be a lot different from North Carolina's. Scottie and I often said we were curious to see what level Alexis was going to be on compared to the kids here. We hoped and prayed she wasn't going to struggle or be behind schedule according to NJ's standards. Alexis blew us out of the water though. Out of 4 marking periods in her 3rd grade year, she got 3 B's - the rest being A's. The last 2 marking periods Alexis got straight A's. Scottie and I couldn't be more proud of her. She did just fine with the school adjustment - both socially and academically.

During her 3rd grade school year, Alexis signed up to play softball for the rec league here in town. One of her coaches saw her love for the game and realized she had a lot of potential. She asked my husband and I if Alexis would be interested in joining the town's traveling team. I already knew this was something Alexis wanted to do more than anything. She couldn't wait for the next year to come so she could try out for that team - thinking it was too late to join the current year. After talking to the head coach and director, they said they would love to have Alexis on the team. I will never forget the day Scottie and I said to Alexis "Would you want to play on the Angels THIS year?". She said to us with a HUGE smile on her face "Do you even have to ask me that?!". The team took Alexis in with open arms. Everyone from the coaches, to other girls and their parents were so kind to all of us. It was then that we realized it wasn't a team - this was a family. Although Alexis loves cheering - she gets a completely different kind satisfaction when it comes to playing softball. It's where her heart is.

For Alexis, the first year moving back to New Jersey was exciting, busy and filled with tons of fun.

The summer after 3rd grade was like any normal summer. It was filled with lots of softball followed up by the beginning of the cheerleading season. We had no idea what that September was going to bring us - especially Alexis.

I remember this day like it was yesterday. I woke Alexis up one morning to get ready for school. She's not the easiest to wake up, but after saying it enough times she woke up. She stepped out of bed - and fell right down to the floor. She was painfully crying, saying she couldn't get back up. I helped her stand up and get back up on the bed. She was complaining of her legs hurting her. Alexis had an unexplained problem with her legs when she was about 3-6 years old, but she explained this as being "different". I pulled her pant legs up and the second I saw her knees I knew she wasn't kidding. They were huge - both of them. Swollen so badly that they didn't even look like knees anymore. I knew it couldn't have been an injury from cheerleading because it was both legs.

I kept Alexis home from school and called the doctor as soon as they opened. We brought her in and the doctor said the same thing that I said - about it not being an injury. She asked us a bunch of other questions too and it was at that time that I really started to piece things together. For a couple weeks before this day Alexis had been complaining of other joint pain too - her wrist, elbow, ankle, ect. I realized it was usually always on the left side. Alexis also frequently got headaches. I never thought anything of it when it was happening but when the doctor asked about it I realized it was more often than normal. Alexis was also very tired all the time - which was not like her. I used to think she was just going through a phase. I never put everything together. I wish I did, at least a little sooner.

The doctor ordered for Alexis to get blood work done. She tested Lex for many different things. A couple days later she called me with the results (this is another day I will never forget). Alexis' blood work came back positive for Lyme Disease and Rheumatoid Arthritis. I remember being on the phone with the doctor for a long time - I was taking notes as she filled me up with information. There was no doubt that this was a false positive - Alexis was positive for 13 out of 13 bands (I will explain this further in another post). Since we had no way of knowing what stage the Lyme Disease was in we started with a 4 week dose of the antibiotic - doxycycline - and prayed that it cured her.

After the 4 weeks of antibiotics, Alexis made some improvement. The symptoms didn't seem to be as bad but it didn't stay like that for long. When I noticed the symtoms didn't completely go away I called her doctor and asked them if they wanted to see her again. They said that sometimes the symptoms will linger, and that I should give it a little bit of time. I waited and waited and waited. Before we knew it the symptoms were back in full force and worse than in the beginning.

Not only was Alexis experiencing the physical symptoms, she was also dealing with many of the neurological symptoms too. School was not coming so naturally to her anymore. Homework was taking hours to complete, tests were a big struggle no matter how much she studied and reading seemed almost impossible. Every time she would read for more than 10 minutes she would get a migraine headache. Not only is it causing her pain, she also just can't comprehend or remember the things she reads. She had a book report to do just a couple weeks ago. She had to read a book then do a project about the book. When she finished the book and was beginning to work on the project, I asked her what the book was about so I could help her with it. She couldn't tell me. She had no idea what this book was about - a book she just spent 2 weeks reading. Now we were only days away from the project being due and she couldn't do anything. Scottie and I had to re-read the book with her - listening to it as she read it to us out loud and stopping her after every chapter to summarize what she just read.

It kills me to see Alexis struggling with something that was always so simple to her. She went from loving school to dreading it every day. Her grades have dropped from the beginning of the year to now - but I told her that those grades mean absolutely nothing to me. I can see how hard she tries and all the effort she puts into her school work. That's all that matters to me. When I say her grades dropped - I mean that she got 3 B's this past marking period. She beat herself up about those 3 B's though. To me - having those 3 B's and the rest A's makes me more proud than the times she did get straight A's, because I know the effort she is putting in to get those grades.

I brought Alexis back to her pediatrician. After deciding that it was still the lyme disease doing this to her, the doctor started to explain to me that the next step was going to be a little complicated. There is a big controversy going on between Infectious Disease Doctors (ID doctors) and Lyme Literate Doctors (LLMDs). I will explain this in further detail in the future also. Scottie and I had to decide what we should do next because the ID doctor and the LLMDs treat lyme disease differently. The problem is that insurance companies do not cover LLMDs. So after lots of thinking, we decided we were going to start with an infectious disease doctor, but keeping an mind open about going to an LLMD if at any point we felt that would benefit Alexis more.

We got Alexis an appointment with an infectious disease doctor. We'll call him Dr S. Our first appointment was very thorough - almost lasting a full 2 hours. Dr S stated that normally the 4 weeks of oral antibiotics is enough to beat this disease and that he isn't sure it's the lyme disease causing all of this. To be sure he wanted her to get more blood work done and to see a pediatric neurologist. The one he recommended to me wasn't taking new patients at the time. So I called 6 other places within a 2 hour radius of us. The earliest I could get Alexis seen was in 5 months! Some places didn't have open appointments for the next 9 months! I thought that was outrageous. Who would have thought it would be such a long wait to see a pediatric neurologist. I knew we didn't have that kind of time because Alexis' treatment was depending on a neurologist's input. After talking to Dr S back and forth for a week straight trying to get Alexis an appointment, he was finally able to pull some strings and get her in with the original one he recommended.

This appointment was for just a couple days later. We'll call him Dr T. At this appointment, Dr T said he is sure it is the lyme disease doing this to Alexis and that his role was going to be to figure out how much of it has affected her neurologically. He ordered for her to have a spinal tap and an MRI done. This spinal tap would be done by Dr T at the end of that same week. The results from this would help Dr S determine a treatment plan for Alexis. The day of the spinal tap was a scary one for Alexis. She hated the idea of getting an IV and really hated the idea of being put to sleep. She made it through all of it. She made us so proud. This was the day I started to realize how brave my little girl really is.

The following week Dr S called with the results. He said he is sure it is the lyme disease doing this to Alexis. He also filled me in on the treatment plan. Alexis was to have a PICC line inserted and be treated with IV antibiotics for 4 weeks. That brings us to where we are now. Alexis' PICC line was put in on April 20, 2012. As of today she is on day 13 of her treatment. The treatment is going okay. She is on a high dose of ceftriaxone, also known as rocephin. Now she is dealing with the affects of the lyme disease along with the affects from the antibiotics. All while adjusting to having a PICC line in her arm. No 9 year old girl should have to experience anything like this.

Through all of this one thing has always stood out - just how strong Alexis really is. She doesn't ever complain or question why this has happened to her (which I am guilty of doing). The way she has handled all of this just amazes me. I have never met such a tough little girl in my entire life. I am so proud of her and I really just can't wait for this fight to be over with so she can live like a little girl again. 

Just a thought...

Since Alexis was diagnosed with Lyme Disease 8 months ago I have read a countless number of blogs and stories written by other people who have had experience with lyme disease. They have given me so much hope for my daughter. I got the idea to start writing about our journey too, in the hopes that some other mother or little girl may hear Alexis' story and find peace knowing that they are not alone. I have not written Alexis' story yet but I will. From there I want to write about her daily struggles - including both the ups and the downs. If this can help at least one other family out there then it's all worth it.