Sunday, May 31, 2009

Update on Gary

He seems to be doing a bit better. His face, hands, and neck have flared less today. He was in better spirits for longer than usual which is encouraging. I am not being negative and say it is not going to last but I just hope in the next couple days it continues. There is no improvement in his weakness but I think that will not return for awhile. He is demanding and wants it his way. It is rather comical because he is so precious. However, I have been trying not to let him run the show too much. The bright side as well is that he will be returning once a week to the infusion center for keep the predisone up in his body and the IVIG. I am already mentally preparing that some of these infusions might just involve staying the night for monitering. I hope not but we need to do what we need to do. If that means staying then so be it. I am confident though that the once a week infusion will get us to where we need to be. The doctors lowered is at home persidone dose because of the weekly infusions. God Bless. We have had quit another weekend. I have been having a few dizzy spells. I attribute that to elevator rides at Childrens. I have a very sensitive equalibrium. Nothing an early bedtime won't cure. Please Dear Jesus, let it be just rest I need. LOL. My mother in law has a nasty inner ear infection. Gary is waiting for my snuggles in my bed. My hubby is missing me! LOL

Watoto's


While we were at the hospital, we once again, missed the Watoto's. The last time they were here I was pregnant with Gary and having surgery. We had signed up to host but had to cancel. We had to cancel again this time as well which was disappointing. Bill and Alyssa were able to accomodate and sent me this amazing picture while we were in the hospital and I just had to share it with everyone.

Dark

I felt so many emotions standing at Giraffe entrance tonight as we got ready to head home. I felt scared. Scared that I wasn't sure Gary was ready to come yet. I was noticing his skin on his legs was changing. He had a rash where he had not had one before. He looked worse walking out of that hospital then when we came in. In my mind it made no sense. So I cried. I cried as we stepped onto the elevator. My body saying go, lets get in our own bed. My mind saying, not sure, I thought they fix things here not make them worse. My soul, broken and confused. My heart just throbs with hurt. What if he needs to be observed at least tonight. What if he has a reaction on the way home. What if what if what if. What if I trust that everything will be ok.

The nurse told me I was welcomed to stay a few minutes just so they could keep an eye on him. He said the peds doctor looked him over. I thought to myself the tall gentleman in the white coat who looked nervous and not sure what he was looking at when looking Gary over? They just got done shooting a cancer drug in him, human antibodies from other people and TONS of steroids. And I am suppose to take him home? My nerves are shot and alls I know is I just love him so much. I love my children so much its hurts.

Saturday, May 30, 2009

Coming Home? Countdown!



Gary is receiving his dose of IVIG (antibodies). We have about 2 more hours and then they say we can go home. We will most likely be home by bedtime. Gary is sleeping soundly right now because they gave him benedryl in his IV. Right now his pressure is good. He woke up this morning very stiff and having neck pain again. I had them give the naproxen so he could get moving. Our roommate is surprisingly pleasant. It is a baby girl and she is quiet for the most part. She has a very soft cry. They were scheduled for discharged this morning but were just told they won't be going home for 48 hours. (Hard not to listen when they are standing on the other side of the curtain.) Good news is that he is due for his methotrexate shot and they are going to push it thru is IV before we go! So I don't have to give him a shot! There is always that slim chance we will be held up, but so far, it looks good.



A FRIEND

We decided to take Gary down to the playroom this morning where I ran into an old friend! She spent the day with us, helping with Gary and getting each other caught up on our lives. My sister and her seem to have much to talk about because she use to work for Alaska Airlines. It was fun listening to them talk about airport stuff. My friend volunteers here on Saturdays. I ask that you add her to your prayers. She has had a tough year and is battling breast cancer. It is so courageous of her to come out and say, "I have breast cancer." I can relate. It is hard to say, "my child has a disease." You don't like saying it, and I don't like people hearing it for so many reasons. I don't like that they will be too sympathetic. I don't like they will not be sympathetic enough. It is a toss up. I feel honored when someone shares devasting news like that. I can only hope and pray that my reaction and concern was something she needed. Thanks Ms. V for spending the day with us!

Friday, May 29, 2009

Back in the hospital

We are back. Back again. I think one of my blogs started like this before. Glad I packed a bag. Gary is continues to show signs that his disease is still active. Muscle weakness is getting more pronounced, walking is getting more difficult. He has lesions that are getting worse on the back of his neck. We noticed when we were checking in that he is developing something in his mouth. The IV went way better this time thankfully. He has been sleeping while they ran the some steroid. Metha-something. He is having mood swings. One minute he is cuddly and happy, then next is very upset.

I am not a happy camper, especially because we have to share a room. I am trying not to be rude to the nurses but we will be here for another three days.

They are running another steroid, and IVIG pulse. They asked me if I had any questions. I said I had no questions but I want to make sure that they consider he may not be responding to these treatments. And to consider if he is not responding then whats next. What is next.

http://www.curejm.com/info/kids.htm There is a familiar face on this website! See if you can find Waldo, I mean, Gary. If you click on the boy next to him, his name is also Gary. So cute!

Thursday, May 28, 2009

HA! Got my way.....

So I called again today (Children's) and we have an appointment in the morning. The nurse said that the doctor would probably increase his naproxen. She was wrong. She called me back and said they want to see him. She explained he was to little, too young. I had it in my mind that they need to keep a closer eye on him. At least I want them to anyway. Our appointment is ar 1030. They told me to pack a bag just in case. I said no thanks.

PS I added a horrible song to my play list called FLY. I didnt listen to it all the way thru until I added it. That is not a good song!

Still

Ok so coming up with a title for each blog is getting a bit challenging. Maybe I will try writing it first, then naming it.

Gary had a good evening last night. Grandma and Grandpa were over celebrating Bryanna's birthday. Gary likes it when everyone is here. Around eight is when he needs to start bed time rituals. Medicines, shower, jammies, laying in Mommies bed with Mommie. Signaled by patting the bed and motioning me over. Last nights sleep was typical. Up three or four times trying to position him. At 5:30am he really wanted to get up because he could not get comfortable. I tried putting on Barney because I just wanted to sleep. But as soon as I am up, I am up. I rarely can go back to sleep. We did yesterday though. We went back to bed at 9 and didn't get up till eleven. Mornings are starting to become a challenge. For whatever reason he was really bad this morning. He couldn't sit, or stand. The only thing he liked was on my lap. Even then he kept holding onto his neck saying owie owie. He has open sores on the back of his neck right now but the pain was triggered more by movement. I went ahead at about 7 gave him his morning dose of naproxen and Tylenol and benedryl. I find there no benefits for him to "work" thru the pain. No, I don't want to keep him drugged but he could barely stand on his own. I do recognize that he will be more emotional and more prone to say owie because I am his Mommie and we all turn it on for our Mommies. But I also see that if he can't stand up, he is not making it up. I am interested to see what his levels are right now. It seems with his symptoms that his body acts like its working over time to counter act the drugs. I am not quit sure if it works that way but in my mind that is how I see it.


I told my sister yesterday that I am trying really hard not to get depressed. She explained that maybe its not depression but more of a grieving process I need to go thru. (Side note: Gary loves being with her. He can be in the middle of a flare and her and Bill will come in and just take his mind off of it. I know that her and Bill are not where they want to be right now as far as jobs but I can't help but think that my Heavenly Father orchestrated this so they are home to be here with him. It is easier on both Gary and I. Everything is for a reason. Gary just may be part of this unemployment challenge.) I like that and I will take it. I have never been a person who gets depressed. I always used the analogy of if you believe in Jesus Christ, then you are to hand it all to Him. To be depressed is a sin. You don't believe that you are taken care of and the He has your best interests and knows your heart? I am always show when I ask myself "how can a person do that?" or be that way. This is teaching me to be careful not to judge others. Not only will you be judged, but shown why. I truly believe that. It happens to me time and time again. Besides that I never battled depression that I thought I did. I would just get pissed for no reason. Still do, drives me crazy. So maybe all this time that has been my depression. Anger. I am blessed to be loved and accepted by my family for this fun little detail about me. Don't get me wrong, I am not a complete physco. I can if you want me to be :).

Thank you to my special friends who check in with me. It is the reason you have access to this very tender personal experience. Thank you for not judging and offering loving advice daily. Thank you for giving me a glimpse of your life to bring me away, if just for a moment.

I have been doing more on the www.curejm.com site. They have pages you can set up for fundraising. Mine is coming soon. It is not easy to be on the websites because of course they highlight children and adults who perished from this disease. I know that isn't good to look at in the height of this all but I would rather know than not. I posted a link to Michael Gavin's Memorial site to the right. It is not for the faint of heart. Yes, I did cry when I read it but it also puts me in check and drives me to take just that much more care of Gary. It is very interesting learning about this disease. It is still hard to believe we joined this race but it is what it is. We are here to fight fight fight.

I put some google ads on my blog. I didn't want to but I already had an Adsense account set up so I thought might as well. That is where they flip you a dime or a nickel if someone clicks on the links from your site. NO I am not dropping hints either. Really I am not. I also put a guestbook down at the bottom, just for fun. I will also be printing this all out including the guestbook to put in his baby book.

UPDATE
Update on Robert's mom. She did not end up having any mini strokes. It turned out to be a really bad ear infection. I am sorry for her ear infection, but PRAISE THE LORD! We were really happy to hear that. It let us let a little air out of our already over inflated inner tube. Yep, talking in clique's is always annoying. Or is that a metaphor?

Just so you don't think I am neglecting the other kids, McGuire has all star tryouts on Saturday. Elexis has been feeling a bit under the weather. Being that the stomach flu is being passed around the family, I am waiting for that to show its ugly head.

Wednesday, May 27, 2009

Proof

Yesterday was proof my mind is mush. I backed into a Lexus at the grocery store. Wooops. How dare they just park right in a parking stall. Whatever. Can't do anything about. It is better to do the hitting then to be hit. More of a hassle for the poor lady who has to have her car fixed. I left a note. She didn't sound happy but who would be. Blah.

I got to go to one of McGuire's last games last night. The parents on the team are so wonderful. I was so happy to see each and every one of them. They are so concerned and caring. They kept saying they didn't do enough for us. I told them not true. They filled my freezer, brought in toys and movies, and collected some cash for us to have for while we were in the hospital to get dinner. It is and will always be something I will always remember. It's like a hug from an unlikely place.

Gary and I had a rough night last night. He woke up at around three, he wanted me to carry him up and down the stairs. He would point downstairs, so down we went. Then he would point upstairs up we went. I think he was having neck pain, his neck seemed stiff. I finally gave him some tylenol and naproxen, again, at about around six. He is back to sleep. He is such a trooper. He tried so hard to get comfortable but he can't do it on his own. I try and help position him but it only lasts for a few minutes. Sometimes it helps to slip my arm underneath him and cradle him while he sleeps. The support to his back seems to stabalize his body making his body move less. I am guessing the skin to skin contact is soothing for him as well. He is still my baby afterall. Although he is getting quite big.

I joined another support group that looks more like what I am looking for. My wise council Mary recommended it, www.curejm.com.

I did talk to the nurse, twice yesterday. I wanted to check-in. She said that she would let the doctors know and if they want to see him she would call. She didn't call back so assume they are fine with no improvements. Time. Then I had to call back because my mushy brain was failing me again. I was typing up my "medicine blog" and found a page that had some conflicting dosage.

HAPPY BIRTHDAY TO MY NIECE BRYANNA 14 YEARS OLD TODAY!

Tuesday, May 26, 2009

Medication/Dosage

Miralax 5ml
Prednisone 5mg 4 pills in AM, 2 pills in PM, total 30mgs
Calcium/Vit D 250mg 3 tablets
Diphenhydramine 5ml once a day, at bedtime
Folic Acid 1mg 1 tablet once a day
Lansoprazole 15mg once a day
Methotraxate 15mg once a week injected (.06)
Acetaminophen 5ml as needed

Monday, May 25, 2009

More and more

My husband had the weekend off which was so nice. Not that it makes a difference to Gary as far as his umbilical cord being re-attached with all this. He doesn't even like to be out of my sight most the time. Always wanting me to hold him. Holding a thirty-two pounder does wonders for my back. By the end of the day I am tired myself from all the up and down lifting. We struggled with the sun this weekend but are confident that we will figure something out. Right now we are on a mission for a sand and water table for his sunless habitat. I might have already mentioned that.

Today Gary's symptoms were the same as they have always been. Like I mentioned previously, I am going to be checking in with the nurse and doctors tomorrow. Nothing has worsened, nothing has improved either. His rash is the same, and physically cannot do stairs, and complains a lot with diaper changes because of hip tenderness. Showers are torture. I know you don't want to read about poo but for documenting purposes, Sunday he had a bad bought with diarehha and then more today. I held off on giving him his softner to see if it subsides. Gary crys quit a bit and is overall cranky. It is very pleasant when the rare times he does get playful and happy. It does not last long however.

I actually found another journal online done by a Dad who's daughter was diagnosed with JDM in 1998 and 1999. He did a very good job updating it daily about her symptoms, what the doctors always had to say, and he even did her levels as well as which meds she was on, how much ect,. I am going to try and email him to see how she is doing. She was nine then which makes her, 2,3,4,5, awwww you figure it out. I can't even remember if I washed my hair or not. BTW, the daughter is 19 now. I want to journal like he does but I get to emotional and make it about me. LOL I try not too.

The kids seem to be doing much better with it all. Elexis is starting to snap out of it a bit. I was really worried about her there for awhile. Almost as much as I was worried about Gary. But she seems to be getting back to her same old sassy self. Uncle Bill and Auntie Alyssa took McGuire and his buddies camping this weekend. It was a promised birthday trip for him. I am sure he had a blast. Unfortunately McGuire passed a unwanted gift back to his Auntie while on the trip, the stomach flu. They had to stay an extra day because she is still recovering and was unable to travel. :0 Poor Auntie.

In case nobody knows, my mother is the best cook in the world. Her dinners always make everything better. I am hoping it is not that I am just a lousy cook making her food taste just that much better. If that is the case, well, fiddle dee dee.

Sunday, May 24, 2009

Just an update...

Gary is doing ok. We still seem to be fighting that fact that not much has changed as far as his symptoms improving. He gets miserable after minutes in the sun. We went and bought him his own outdoor sunless habitat. It is a 10 x 10 tent style gazebo that creates space in the backyard for him to play. He seems to enjoy. We just need to get our backyard into shape. It is grassed but a lot holes and bumps which are murder on his poor little tender hips. He is developing tiny lesions on his knuckles, cuticles, and one tiny on his eyelid. I am curious to see what they develop into. Hopefully no infection develops. I think we see his rheumatology doctor this week. If not I plan on calling Tuesday and asking for a check in appointment. His appearance changes everyday in my opinion. He looks puffier and puffier. Uncle Bill taught him to say that he has a baby in his tummy. I will ask him, "what is that?" (pointing to his tummy). He cocks his head to the side, winces and says, "dat me baby" as he pats it. Thanks Uncle Bill. The evening before bed is when Gary gets most miserable. Last night was his second methotraxate shot. He was already crying and I suddenly got it my mind that it was time. My parents were here. I told him I am getting ready. Rob held him, put a blanket over him with one leg out. It worked well. I walked in, everyone distracting him, popped the needle in, pushed the medicine, counted and walked out. He had a knot on his thigh afterwards but didn't seem to be in any pain from the shot. He has a small bruise but its either a small bruise or insert needle nice and slow. There didn't seem to be any immediate side effects from the methotraxate like tiredness or mouth sores like I have read. So we shall see.

I joined an online support group for dermatomysitis. Some of the member have responded to my post. I asked what is he feeling. What do I need to look for that is good and bad. The disease is unpredictable and each patient is different. It is the unknown that naws at me.

We got a call yesterday that Roberts mom was in the hospital. She has a history of gastrointestinal trouble like Robert had surgery for two years ago. This time they say was different. At two oclock in the morning the fire fighters had to come in thru the second window because she could not come to the door. The doctors suspect that she had a series of mini strokes called TIA which is a warning sign for a big stroke. We didn't go down to Portland but stayed in contact. If she wanted us there Rob would have gone and will go. She is going home today though. I would appreciate prayers for her. We feel helpless with her living almost five hours away. Rob will have to go if she needs us. Gary can't make a trip like that right now. Uuuuggghhhh. Poor MIL.

Friday, May 22, 2009

Eye Appointment

Gary had an eye appointment today. The doctors never explained to me why it was necessary but I figured there is a good reason. His vision is good. But she (doctor) kept saying that when he get cataract's ect. She asked me if I had any questions and I said, "you keep saying when, don't you mean if he gets cataract's?". She said yes but explained the kids that she see's usually end up have eye surgery. One more bolder piled on. I shared this with my hubby and he requested we don't go to the doctor anymore. He of course didn't mean it but everyday we keep learning of new things that may be in store for our baby.

My next question is going to be when is he going to get better. The sun is to the point where we are better off if not even a ray hits his skin. After the doctors he had a flare up. His face swelled and he was miserable. He slept for a couple hours tonight and then woke up inconsolable. I really don't like hearing him cry. It so stressful because I just want to make him feel better.

Rob and I went to the Mariners game tonight and left him with Aunt Amy. That was after Aunt Amy was up at six AM to come with us to Children's Hospital for his appointment which took half the day. The Mariner game. It was fun and we had great seats. My mind and my eye kept wondering to the large sign in right field. "Seattle Children's Hospital". I kept finding myself staring. I appreciated being there but don't think I am ready. I am not ready to join the general population because I just want to scream "My BABY is sick and you are not!". At this point the paddy wagon would come and put me in restraints and haul me off. Then where would Gary be.


So here is to a relaxing three day weekend. May it rain heavily so my baby and I can do some puddle stompen!

Thursday, May 21, 2009

The Sun

I actually said to my sister this evening, "Uggghhhh what time is it? I can't wait for the sun to go down." We are not the Bradfords. We are the Vampfords. We don't suck no blood though. Sorry I do not rejoice in the forecast of nice weather. Now nice weather to me is overcast and rainy. I actually get mad if its nice.

When it rains, it pours......

Gary is doing pretty good. He is changing quite a bit rapidly as far as his appearance. The good news is that no matter what he looks like, it still really cute. He is starting to say more and more words. Yesterday we went outside for bit all covered up. He had very little reaction. Tomorrow we have a eye doctor appointment. Apparently the steriods can mess with the pressure in your eyes. I will let everyone know how that goes. We also have another blood pressure check. The kids have half day so I will be able to bring Lexi along.

I have been shopping for a large umbrella to cover the back patio so he can play outside. The one I found is on ebay and it look awesome! It comes with mesh netting to create a gazebo type room. And its off set so you can move it around. Then I could run fans in it to keep him cool.

When it rains, it pours.......yes. Nothing I can't handle but I want to keep my emotions under control. I am trying to adjust to the fact my child has a life altering disease. Everyone is so encouraging about how they have made advances. I appreciate that so much. I also recognize however, that the disease hurts his body and the drugs are helpful but harmful as well. I am finding out that it has been just recently they introduced IVIG (antibodies from other people) and it is still experimental. As long as it works? I have no questions, I don't question it. I just have to........watch it go in.

McGuire has the stomach flu. He has been up since 4am throwing up all over the place. He is so sick. Of course Gary gets up early and doesn't want his Dad with in 5 feet of him. (Gary does that everyone once in awhile, even with me, he doesn't like you for a few minutes. Mood swings). So I am trying to help my ten year old who is laying in his own sickness and tell Gary I will be right there. I just pray Gary doesn't pick it up. It could mean a stay in the hospital again. Not to mention trying to keep his medicines down. He won't get it though. I speak it in the name of Jesus! LOL.

Then there is school. Problems at school. I suppose I have to get it in my head that people are not going care that my family is on the tilter whirl right now. I thought I was doing the right thing by getting in contact with who I needed to- to make sure everything was alright and to say hey this has happen three times, lets work it out and get to the bottom of it so all can be well. I was expecting that sounds great, lets meet when you have a chance or sorry it happen but here's why. I just felt attacked though. Email is never a good way to go in situations like this. (lesson one) There are no "I pass" tickets. You just have to do your best and deal. (lesson two). Keep on keeping on. All will be well. This to shall pass.

Tuesday, May 19, 2009

Good Blood Pressure

Blood pressure was good today. 122/65. The nurse taking it said, "its kind of high". I said, "no its not." I was happy to see our regular pediatrician in passing in the hallway. He stopped and gave me a hug and said "Glad to see you are out!". I thanked him and I said, "his blood pressure is 122/65, please don't send us back, please." He said it was fine given that Gary is one steroids. Gary does much better when the entire family is around. We all take turns with him. He enjoys it very much. He forgets his ouchies. Good news in the poop department. Like five times today. So the medicine is doing its job. I am not looking forward to my baby brother going back to Miami tomorrow. I get very emotional. I may just ask him not to say goodbye.





When Elexis was about Gary's age she went into Childrens as well. She was only there for 2 days. A virus attacked her bone marrow stopping her from making red blood cells. Nothing a little transfusion to fix that right up. I had a song that I associate with that experience. It is a song from Shrek. "There is something that I see in the way you look at me.........yadaa yadaa......it is you I have loved all along." Well with every hospital stay I dedicate songs. The following song is dedicated to this experience. All's I want my baby to be able to do is play baseball. Alright, amoung other things.


video

Today Schedule

We are headed up to the pediatrician for a blood pressure check. Last night was nice to be back in our bed but restless. Gary kept getting up and crying. I think he missed the vital checks. NOT. I think I am having dejavu from last week. A "persons" unwelcomed call adding stress, just like last week. Weird. No worries though. My poor nephew has a bad cold. Pray for no germs and his healing. My brother goes home tomorrow. It is paradise having him here. Seeing his face come thru the door makes me feel so happy in spite of it all. No high blood pressure! Let's chant. Repeat. No high blood pressure.

Monday, May 18, 2009

Home Again!

I am so glad to be home. I am so tired. I am so blessed. Thanks to McGuire's baseball team and my momm and daddy I don't have to worry about dinner.



I still can't believe we had to go back to the ER. I still can't believe they admitted us again. I suppose the point is we are home but it is still..............unbelieveable. Gary is resting right now. He is on and off agitated.



This time we had a few problems with IV's. We were blessed with our own room at least which made things much easier. In the ER they put the IV in the top of his hand. It was in most the day before they hooked it up. The nurse said she thought it "blew". I never picked up on that during any episode of ER but I am pretty sure I know what it means. They knew something wasn't right because everytime they started the IV he cryed and cryed. They would not take the old one out until a knew IV was put it in. They wrapped him in a towel securing his arms and hands. (This is so not easy to type). Starring into my beautiful babies green eyes, with his blonde curls, with an intense pink face and chubbing cheeks, drawn down mouth- nearly broke me. Ok it broke me. He looks at me like "why, why, what did I do wrong" look. Panicked, frantic and looking betrayed. He was hot, intensly sweating. The feeling in me was to go, go away from yourself to get thru this for him. I tried. The first jab his teeth clamps down and he screams and his body jolts. His body is hot and the only think I can do is look at him face to face. I felt like I needed them to put an iv in me too so it was fair game. The nurse moved it around in his hand, searching for the jackpot that never came. He finally took it out. I wanted to be mad but felt frozen in total fear. How do I get my baby thru this because he is going to do again. Holy God he is going to do it again. I found myself panicking how do I ask him (the iv guy). Another jab, sweating and screaming. I was waiting for Gary to vomit. I could feel his little heart pounding thru the towel. You would think they were sawing his hand off. It didn't matter what they were doing. They might as well. The last couple searches for a vain was too much. I barried my head in Gary little neck and cried. I felt defeated. I felt I let him down for crying. When we got back into the room, our family was waiting with open arms. Gary and I just looked at each other and cried. The look on his face was of relief. Relief that if Mommie is upset, then it is ok that I am too. I expected it to be more fear because I was crying. But it wasn't. The nurses pulled me aside and explained how the next go around I should stay out of the room. That was a half and half feeling. I agreed but didn't want to abandon him. Standing outside that room I felt somewhat like a coward. I felt helpless as I heard the nurse tell him in an almost adult fashion (loudly over his screams) "You are doing good. You are almost done. You are doing great. You are going to be Ok." I was holding onto my husband, pounding the ground as I listened to him from behind the door. I prayed. I prayed for it to stop. I heard them saying, were done, were done. It was driving me crazy. If you are done, then give him to me! There bursting out from behind the door of tortune was my baby. My baby Gary. His chubby arm wrapped around my next. I felt his sweat soaked curls stick to my face as my heart broke. He had those intermitent after burn cry breaths. His yellow hospital pajama's soaked.



He calmed down and we finally got the steroid going. After that he slept through the night, even through vital checks. We were all exhausted in every sense of the word. It was nice to have my family there. It feels weird, but we all feel better together. Visiting hours were over at eight though. We were hoping to get to go home by Sunday. They told us they would run is last steroid dose at 2 and wait two hours to make sure he didn't have any reactions, then home. The family even planned a special dinner over at Grandma and Grandpa's. They waited and waited. Gary didn't do as well with the last dose. He seemed to be feeling ill and highly agitated. His blood pressure shot up to 163/74. The nurse came in and dropped a hint. "Well, if you get to go home tonight". My husband and I dropped our luggage. We both knew we did not want to take a sick baby home, but our cherish family gathering was waiting for us. His blood pressure warranted another over night stay. So we called the family and delivered the disappointing news that we wouldn't be coming home again. Alyssa came and changed places with Rob so Rob could go to work the next day. This is quite the experience for the entire family. Gary slept through the night and they ran blood pressure medication in his iv throughout the night. By morning he came back with a bp of 131/48. I thought that was high but they said it was fine. It was once again, good to go home! Gary is still having tenderness in his hips. It is difficult for him to bend down and pick things up. That will improve with time. The doctors suspected that we may run into more symptoms and more progression of the disease because he had such a sudden on set of it. We will have deal with what comes. Gary is having constipation issues has I mention in my Poo Blog. They explained the disease makes not work the way he should. We need to be careful and keep things moving with softners. They sent me home with a giant bottle of it. I found it kind of comical. I envisioned myself trying to wrap both my arms around the bottle, trying to fit it in my car.

Sunday, May 17, 2009

Not going home.....

I thought we were headed home tonight but we are not. (Not at this point)
They ran another round of steroids this weekend. Gary's level weren't where they wanted them. We originally came on Friday to the ER with shortness of breath and big, tight tummy. They xrayed him and it turned out to be the big P word. So he is backed up which I find hard to believe.

I don't have much time to write so I will add to my "poo blog" later. But his blood pressure is to high to go home. Boooo hooo.

Saturday, May 16, 2009

Oh My!

Back in the hospital, not so good.
Brother flew from Miami to my surprise, good.
3 attempts to get an IV in to my screaming 2 year old, really not good. Vomit worthy.
Being paged to go back down stairs for the forth attempt, even worse.
Glad my brother is here. I missed him.


Think this may be some kind of strange poem I created.

Back in the Hospital

Well we are back. Back again. They are going to do another round on intravenous steriods and anti bodies. We came in because Gary was having slight labored breathing and distention in his belly. So much for having a great day yesterday. That is ok. Everyday is a new day! Hope to be home by Sunday but they said most likely Monday. They kept us not because of his tummy or breathing but they didn't like his levels from Thursdays blood work. He also has been having to much muscle weakness and joint pain. Should be headed in the other direction after last weeks therapy. We are no means back to square one but just pedaling up hill. Gary is doing so good right now. We are waiting for his meds. If you could see the expressions he makes. They melt me. He has such a wonderful personality. The family is headed down to spend the evening with us. We were suppose to have a do over of McGuire's birthday and Mothers Day. Looks like we will have to do another Do do over.

Nicole, I love you! Thank you for the info on the support group. That is awesome. Thanks for the compliment as well. Miss you so much.

Blogs to follow, most likely complaining that I wanna go home.

Regards to my Meltdown

This is an email to my cousin. Thought I would cheat and double do it as a blog as well. WARNING I hope you all can find it in your heart not to judge me. At least try not too. And any references made toward "people" in this, if your reading this, it ain't you.

It means so much that my family cares and loves us. This has taught me that when you hear someone is going thru something that at least telling them or asking what can I do? I feel very taken care of but you know there are those few people who I think, oh ok, no worries for you, its not your baby, its not your kid, go on your merry way. Skip to your lou darling. Why does that hurt me? It shouldn't. Who cares what other people are doing? The world is not going to stop. I suppose I am directing my anger at something or someone I can. Because I am not going to direct that to my Heavenly Father. I should not do that (point fingers) and I should not make this about me. This is between me and God. I feel Him here with me. That is why I got the thumbs up last night to go ahead and cry. My tears would not come before. Not in the hospital, not at the ER. At that point He surrounded me with His armour. I felt over and over again, now is not the time. Last night, it was time. I also believe there is a reason. There is a reason why certain people in my life have not entered this picture. Because they are not meant to. God wants that. If God wants them at my side or in it, then so they shall be. If you are reading this then you are one that is in it and with me. Sweet. I have peace with that.

I have this guilt, like I am trying to get attention or something. I feel hesitant to tell anyone or go on facebook and say something. Like I posted pictures on my facebook of Gary at the hospital. A little voice inside me said, "why don't you try and get attention, no one wants to see this." I posted them but strangley enough think I might take them down. But he is so cute in the pictures. Even when he is sick with a disease. LOL Can't help it. It is hard not to share his beauty. I suppose all mommies have the very same opinion. He just puts me in awe with how cute he is.

I have my wonderful family. I am scared to be left alone with Gary LOL. Which is weird. He keeps having flare ups and its hard for me to decipher what is really bad and what is normal for the disease. I need to have my wise council here even when I don't agree. If I had no regard for them (my wise council) we would have gone back to the ER last night. His tummy is or was hard and completely distended. He had naproxen tylenol then benedryl. Benedryl we couldn't live without. It yes, knocks him out, but he can't stand being in his body anyway. It is funny, yesterday he was great. Rash was good, pain was good and then 5pm BAMMM! It is so hard to try and figure things out.

Thank you for the prayers. We need them. I learned a couple months ago that when you have strife with someone and you don't reconcile, God doesn't here your prayers. I need everyone to pray because I am not sure He hears me right now. Love you

Friday, May 15, 2009

Melt Down

Melt Down.

Another Flare Up

Gary had a great day today with pain here and there. Around 5pm he began to get tired. Then began to cry and didn't stop. His face started to swell and I had to call in the forces to distract him to see if we could snap him out of it. We are all swimming in uncharted territory right now. Trying to figure out when to go to the ER and when its just his disease. I got Tylenol and it did nothing. I then gave him his next dose of Naproxen (part of the forces). I then called in the other forces, Aunt Amy, Aunt Alyssa, and Uncle Bill. Uncle Bill being the key factor. Uncle Bill can usually break him out of anything. We all went and sat in a shade. It really stinks because sunny days are not my friend now which is confusing to me but it is what it is. I am gonna need to hit the tanning booth. This time last year I was starting a delicious golden brown tan. Oh well. Anyway, he calmed down but continued to flare. Red face, red fingers, swollen face, swollen eyelids. It has taken awhile for the Naproxen to kick in. Our next force is benedryl. So far so good. I have not needed to give it. If I can hold out till bed time it will be better for him because I need to get him to take his steroid. Have I mentioned how much I hate this?? I know everyone is telling me he is going to come out of this with flying colors. But it is just like riding your bike up a big hill. It still hurts to get there.

The naproxen has been in him for an hour now but he is still saying ouch a whole lot as he walks. I am so thankful that I have my sisters. My husband is umpiring till very late and all day tomorrow. I don't like to be left alone with Gary. Sounds crazy huh? His flare up's make me freak a bit. Might as well just go live at the hospital. Being perfectly candid and you might think this is crappy. When I see or here about a healthly child, I get jealous. I know that is weird. I just want him to be better. I just don't want to worry about whether or not he will be able to swing a bat. I know God has this. I don't need anyone to tell me. I am still human though. I still will behave as a child. A child of God that is.

Better

Gary is better than he has been the past two days. The naproxen the doctor prescribed seems to help a lot. He still whimpers and crys when bending over to pick a toy up. But he has not been on the couch almost all day. Auntie came over today. We lathered him up with sunblock and put a hat and long pants on and went for a walk. Gary road in the stroller. Only his hands were exposed. I had taken extra special care to sunblock his hands. After about 15 minutes though, even with sunblock his hands turned red and his thumbs began to swell. This summer will be interesting. I wish we had the money to build a giant deck with one those sun shade things that rolls out and covers an entire area so he had a place where there was no sun. But we live in WA. Only so many days I need to stress about.

The nurse called today and said his labs from our emergency visit yesterday were what they expected them to be. He has elevated muscle enzymes and they mentioned a few other things. Our next appointment is Monday still. Sorry if I repeat anything in previous blogs. It helps me keep my thoughts in order.

We had fun with Grandma and Grandpa yesterday. It was nice having them there at the appointment.

I received a really nice email from one of my friends, Mary. She has a lot of great things to say and I have decided to run things by her for all of her great idea's. She suggested that I get some old home video out for Elexis to cheer her up. That is such a great idea. I have been wanting to convert the tapes to DVD anyway. She also explained to me in kid terminology what Gary has, LOL! It was brilliant. I will be passing her explaination onto the kids.

So tomorrow is the day. Gary will get his first injection. My mom has warned me not to do it. To have someone else do it. I can't though. I have to do it. I trust only myself. I just have to have control over this one so I know. I will take one more practice injection on myself tonight before bed with saline. My goal is to do it fast. NERVOUS for me, NERVOUS for him.

If I misspell anything or miss any words, sorry don't care, you know what I mean. oooooo I am such a brat.

Thursday, May 14, 2009

Definition

Juvenile Dermatomyositis
What is juvenile dermatomyositis?
Juvenile dermatomyositis is one of the conditions in a group of conditions called the dermatomyositis/polymyositis complex. The conditions in this complex are characterized by muscle damage due to an inflammatory process of the blood vessels that lie under the skin and muscles. Skin changes around the eyelids and over the knuckles and finger joints are also seen. Juvenile dermatomyositis is the condition most often seen in children.
Juvenile dermatomyositis is rare, affecting 3,000 to 5,000 US children under the age of 18.

What causes juvenile dermatomyositis?
The cause of juvenile dermatomyositis has not yet been determined. However, factors which are thought to be associated with dermatomyositis include dysfunction of the immune system, resulting in infections.

What are the symptoms of juvenile dermatomyositis?
The symptoms of juvenile dermatomyositis often appear gradually. At times, there may be a more acute, or intense, onset of symptoms. The following are the most common symptoms of juvenile dermatomyositis. However, each child may experience symptoms differently.

Symptoms may include:
fever
rash around the eyelids and/or knuckles and finger joints;
a rash may also occur on the elbows, knees, and ankles
muscle weakness
fatigue
malaise
muscle pain and tenderness
irritability
weight loss (due to difficulty swallowing)
joint pain and inflammation
calcium deposits under the skin (calcinosis)
mouth ulcers

Symptoms of juvenile dermatomyositis may resemble other medical conditions or problems. Always consult your child's physician for a diagnosis.

Phases of juvenile dermatomyositis:
The course of juvenile dermatomyositis is often divided into four phases, based on symptoms and findings on examination. The four phases are briefly described below:
Prodromal periodThis phase can last for weeks or months. The symptoms seen during this period are nonspecific (general symptoms which can indicate many different conditions).
Progressive muscle weakness and rashIn this phase, muscle weakness increases for days and weeks and then stabilizes. Once the stabilization occurs, it may last from one to two years before recovery.

Persistent muscle weakness, muscle inflammation, and rashDuring this phase, symptoms include persistent muscle weakness, active inflammation of the muscles, and rash lasting up to two years.

Recovery
Recovery may occur without any apparent consequences, or may occur after two or more years with residual muscle weakness, atrophy (wasting), or contractures (a condition in which muscles in a particular location may become permanently paralyzed as a result of lack of use).

How is juvenile dermatomyositis diagnosed?

In addition to a complete medical history and physical examination, diagnostic procedures for juvenile dermatomyositis may include:
laboratory tests - to assess the presence of antibodies, muscle enzymes, and indicators of inflammation in the blood.
electromyography (EMG) - an electrical test to determine nerve or muscle damage.
muscle biopsy - removal of a small piece of muscle for microscopic examination.
x-rays - a diagnostic test which uses invisible electromagnetic energy beams to produce images of internal tissues, bones, and organs onto film.
magnetic resonance imaging (MRI) - a diagnostic procedure that uses a combination of large magnets, radiofrequencies, and a computer to produce detailed images of organs and structures within the body.

Treatment for juvenile dermatomyositis:
Juvenile dermatomyositis cannot be cured. However, with supportive therapy and a multidisciplinary team approach to treatment, remission of the disease may be achievable in time. Treatment may include:
medications such as glucocorticosteroids and methotrexate (to treat the inflammatory process) and hydroxychloroquine (to help treat the skin disease of dermatomyositis)
physical and occupational therapy (to improve muscle function and strength)
liberal use of sunscreens (to prevent further irritation or damage to the skin)
nutritional support (to ensure an adequate diet).

Back to the Hospital

This morning after blogging I decided to give the nurse another call at the hospital. The promptly called me back because Gary is increasingly having difficulty walking, sitting up, sitting down to the floor, standing up. She said to come in to the clinic and skip over the Emergency Room. Childrens Hospital in Seattle is very organized and I am impressed with how quick they are. I suppose it helps with Gary's condition but just the same. They took his blood pressure which was up but it has been since the beginning of this whole thing. The doctor explained after examining him that we could check him into the hospital, but, (the best but of my life) she wanted to increase his dose of steroids and prescribed naproxen for pain. He had blood drawn again. We are waiting for the results. I was suppose to call by 4 but was trying to get the prescribition filled at Walmart. Insurance would not pay for another round of steroids until the 28th. Oh well, it will work out. My mom and dad drove us today, took us out to lunch, and made things a lot easier. Gary is sleeping now. He is moving around a bit better. I will never get use to him saying "ow ow ow ouch" as he trys to stand himself up. But he is walking and playing. You can tell the way he swings his hips slightly to bring each leg around is done with effort. I suppose we will have good days, and bad days. Right now it is frustrating trying to figure out his normal. I asked the doctor, Monday he was having no problems with mobility by Wednesday he can't get up without assistance. What is in store for tomorrow? No swallowing or breathing problems. There is one thing I know for sure at this point. I just can't expose him to public or private germs! (whatever that means) I am tempted to post a no flu symptoms on my door. We are politely declining visitors. The flu could cause big trouble for us. Don't get me wrong, I have faith. I know he is in God's hands and I trust. I am also guided by Him as well- to help protect Gary and get him better thru God's love~ my maternal love. No matter how many times I have to watch Finding Nemo.

New Symptoms

I know that dates on the posting will be the same but I wrote the first blog on Gary as an email. Yesterday was a rough day. Dermatomysitis attacks the skin, muscles, and joints. My thinking, well he came down with the rash and I noticed a little bit of joint pain in the legs but nothing of not walking like the description of the disease says. Since he has and is being treated with all the drugs, the progression should stop. For the first time yesterday, Gary could no go from a laying position to sitting up. He tried 3 different time. Of course I am like what the hell. So I picked him up ever so gently and set him on the floor. I told him come on lets go get a cracker. He proceeded to slowly swing each hip to make his legs go. He was so slow and he mutter ouch ouch ouch each step. Going back to my thinking, I thought we are being treated? With the steroids and antibodies in him why would he continue with any sort of deterioration? Gary cannot lift his leg to complete a step up or down any stairs. He cannot go from a standing position to a sitting position. And vice versa. I told my husband to watch him because once he gets on the ground he is like a turtle that gets turned over on his back. He is stuck. All this is new. Last night in bed he was crying a bit because he was unable to turn himself over from back to tummy without great effort. He has been sweating profusly in his sleep. It breaks my heart! He is soooo cute. I start to freak out and keep reminding myself that God has got this and I have faith. He is alive. I was told by my family to try and not freak out over every little booger but its a coping mechanism for me. Gary is taking his medications really well. We are on a 2 day countdown to his first injection. It will be one on Saturday, every Saturday for the next 6 weeks. My family is so wonderful. I am so lucky. Both my sisters and parents spared me their reactions of worry and kept calm which really helps. God created my sisters to fit me. They don't add extra stress, they just take it away. Which I really need that. Always and forever I will be grateful for such wonderful gifts. My parents brought dinner in 2 nights in a row, and my friend Deanna brought it in last night. So nice not having to worry about that and gives me more time to spend with Elexis and McGuire. This is hard on them, especially Elexis. I am getting worried about her. Her behavior is constant crying, and overall just not happy. I have not seen her smile since last Thursday. I am doing my best to keep attention where attention is due and be loving. It is frustrating sometimes though when she insist things go her way or else.

Dermatomysitis

So I have decided to blog as part of journal the happenings of Gary's condition for the doctors. The following is an email I sent to my cousin explaining what is going on:

Gary has been diagnosed with dermatomyositis. Four weeks ago Gary came down the a rash while we were outside for a few minutes. I thought he had allergies to pollen or something. So I brought him inside and called our pediatricians nurse. She said it sounded like allergies and to put him in a bath and give him benedryl. For a week I kept him on Children Clariton and Benedryl has the rash would come and go. The second week he woke up with swollen lips. Very swollen, he was not able to close his mouth. By the afternoon I noticed he had a large canker looking sore on the inside of his mouth. I took him in right away. The doctor thought it was his first exposure to the herpees virus. They put him on an anti viral medicine. Three days later he broke out into high fevers. I called and they said his test was negative for herpees and they were testing the swab for herpees zoster. I decided to stop the medicine for herpees because that is not what it was and was making him sick with diarreha. Gary's energy was dwindling. He would get spurts here and there, but no where near what a two year olds should be. He complained of constant pain, especially after baths. I called again and they said it sounded like hand foot and mouth or fifths disease. I was patient but was growing tired and worried of his lack of energy and how miserable he was. He spent most days on the couch, or laying on the stairs crying ouch ouch ouch. Thursday, May 7th, was it. I called a nurse at Childrens and talked with her for awhile. I explained why I thought it was nothing they were saying. She almost went with the "it takes awhile to do away" but agreed that all the things we thought it was didn't make sense. At the after hours clinic at Overlake Childrens the doctor didn't take very long. Gary was running a temp of 102 and had bad tummy pain. He said he had a possible Kawasaki disease. We rushed to the ER at Childrens Hospital in Seattle. The did blood work took musus and urine sample. The mucus sample was the worst out of all those. He screamed! We were able to get him to go pee pee in cup instead of having to put a catherter in. My sister came from work. We look at each other said, "wait, let us at least try." So we too him in the bathroom asked for a large cup of cold apple juice. He started drinking. I took a cup and filled it with warm water and Waahhh Laaaaa, pee pee. He is so ready for potty training. At around 2 am the blood work came back. Urine was fine, blood was fine except for some elvated liver levels. The the tests would not be back till the next day. The doctor (the only doctor Gary loved) said the other results wouldn't be back until the next day. We were admitted. They concluded that the order of his symptoms was not in the right order for Kawasaki. After 2 days as dermatologists, Rhumatologists came they all concluded it was dermatomysitis. He was treated with methotrexate (antibodies), prednisone (steriods) and few other drugs in heavy heavy doses. He will continue at home with injections of methotrexate. (Which I practiced with Saline on Grandpa today. Poor Grandpa, he is the one who pulled down his trousers and said "do me!" LOL Grandpa said I put the needle in to slow. He he he he Anyway then Gary will take inCrushed pill form: calcim vitamin D, folic Acid, Iansoprazole and prednisone. Benedryl as needed. The hardest part is going to be that Gary will gain weight especially on his face. So his apperance will change. That is sad, because he is perfect the way he is. I am hopeful he will go into remission and this will never surface again. Things we have to remember is the sun in not our friend and right now his immunity will be very low so he is susceptable to infection. He sleeps a lot right now and his energy is pretty low. The rash is looking better now so that is good. We will be frequent flyers at Childrens Hospital for awhile. Is next appointment is Monday. His next intervenious therapy in on the 22nd. They will be monitering all his functions including his eyes. Everything as far as his heart looks good. I am attaching pictures. I will keep you updated!