Wednesday, September 30, 2009

Pain Free

Here is a link I found from a mother whom I recently met at our support group meeting. We have been getting treatments since MAY. IV after IV after IV. Now I am told there was a doctor who specializes with pain management. I wonder why they don't tell you that is an option?

Here is the Link, www.seattlechildpain.com

There also is a video she took from the infusion center. It was very hard for me to listen to, so I extend a warning of caution. http://www.youtube.com/watch?v=go7Hz53LKb0.

I Told You


I posted this picture of Gary at Krispee Kreme eating a donut. As I stated in my previous post, we are tapering his steroid. He is down to 5ml in the morning and thats it. So his weight is starting to come down. I know I talked about how excited I was about that. At the same time it doesn't bother me because he is sooooo stink'n cute. Yesterday we had another blood draw. Gary was very scared this time. I had to carry him into the hospital. He usually fights me on walking. He is a big boy. He wants to walk. He practically ran the other way. Poor buddy. He was not his usual perky self. The great news was that HECTOR was there to do the blood draw. I was thrilled. I saw him out in the waiting room saying hi to someone and I said loudly, "Hector, Your here!". I know in the back of his mind he was thinking, who the heck are you?! But I don't care. I am sure he see's a lot of patients. We were in his lab room for about 40 seconds. That included, sitting down, chit chat, and the blood draw. He once again worked his magic and threw the needle in a vein. He throws it like a dart. It is the coolest thing I have ever seen. Gary already crying did not have to sit there and look at needle in his arms for over 5 minutes. When we go in next week for our overnight, I am tracking him down and taking his picture. He truly is amazing. I know I am going on and on about Hector, but the trauma Gary has been through is a whole lot. To have this one thing done so quickly is really great. So here is why I started off this blog talking about Gary eating a donut. I have been so aware when we are out and about. People stare. Sometimes they laugh, like "how cute". Sometimes they OOO and Ahhhh like he is a newborn baby. Then there are the ones that make send me to the roof. We were in the gift shop yesterday, waiting on the pharmacy. Gary picked out a balloon, handed it to the cashier and began to stroll around while his balloon was being blown up. Of course there is candy in a gift shop. He picked up a piece and looked at his Auntie, "Can knee Nannie?". She replied, "what did you find, candy? Yes, yummy, huh?". He said, "Yummie," and but it back down. A woman with her child in a stroller watched all this. She then proceed to tell her very small child, out loud, "Oh, you will not know what that is, not if I can help it." Something along those lines. I was across the gift shop and on the other side so I heard none of this. I came back around and my sister was upset. I asked her what was wrong. "People are freaks." My sister is just as sensitive about the issue as I am. So let me give you a heads up. Some advice. THINK WHAT YOU WANT BUT KEEP YOUR MOUTH SHUT, ESPECIALLY IN HOSPITAL GIFT SHOPS. You have to know that patients and there families are in there. They hear you. It is not what you know, it is what you don't know. With all that being said. I forgive that lady. Don't leave me a note saying maybe she didn't mean it that way or Gary doesn't notice so neither should you or don't be so sensitive. Oh wait, thought I said I forgive her? Ha HA yeah, working on that. This all just confirmed my suspicion about what is going thru other people's heads when they look at him. What did I learn? Never judge, and if I do, keep it in my head. If I do judge, I have learned this time and time again: The good Lord will show you. He will slip you into those persons shoes to help you feel your assumptions. He has bestowed that gift upon me time and time again. I am grateful for that. Well, when your in the thick of it all, it can be hard. Find joy in all things. Ok so my joy would be I know that Gary isn't the way he is because I fed him too many donuts.

Monday, September 28, 2009

Overnight is coming up!

Where did the time go. I wish we didn't have to go back for our overnight infusion but I have to explain it to myself like I explain it to Gary. "It will make you better." It will keep him better. Gary is doing fantastic. Potty training is surprisingly going very well. We are still working on getting him back to sleeping by himself. I have to admit though I miss him when he is not sleeping next to me. He is like my teddy bear. Gary is seeking his independence as well. He insists on walking with the family. That is such a good thing. We haven't needed any therapy, speech, swallowing, or physical. Gary is taking it all by storm. He is figuring it out all on his own. Once in awhile he doubts himself when stepping up stairs or slight inclines. I just have to remind him that he can do it now. I am so excited to see how much weight he has lost. He looks slimmer to me. I am head over heels to the moon and back excited for my babies face to come back. As adorable and cute as he is, it still is not him. It reminds me every time of what we have been through.

Gary's skin looks great. I have hardly noticed anything out of the ordinary. His strength is just as good. We check in next week on Friday the 9th at 3pm. We were worried about having to schedule on Daddies birthday but that won't be a problem.

Ok-gotta go do my prep for our Monday shot. Ugggghhhh. I complain every time which is rude. It's not like I am the one getting the shot. Speaking of shots, flu shots for the whole family are going to be coming up. Eeeeekkkkksss.

Love to All!

Friday, September 25, 2009

This is from back in August

It still makes me laugh!
Don't forget to mute music to the right.

video

I also put it on FB for a friend, so sorry if you have seen it already. :)

Tuesday, September 22, 2009

LABS today

We are scheduled for labs today. After the chemo drug, they need labs on the 10th, 14th, and 21st day. Besides closely monitoring his levels, it will help them determine the dosage for our next overnight stay. We have been busy running here and there. Yesterday we went with Grandpa and Auntie to hang out at the hospital while Grandma had her surgery. Gary was being carried by Grandpa onto the elevator. Suddenly he looked very worried. He tucked his little hands behind his back so no one could see them. Once again, he thought we were there for him and it was IV time. He really understands when you tell him things. I told him we were not here for him. We were there to see Grandma. He relaxed and asked, "Grandma? Tube? Oh." Luckily and to our surprise a friend worked on the surgical floor. She had said a few of her co-workers sat down and said, "did you see that cute little tanker out there playing?!". That's it. T-Shirt time. It's hard not to make things up in my head. I always am paranoid that I am being judged, especially if Gary is asking for a snack. Then my rational side kicks in and I really don't care. Gary is so awesome the way he is! Big, small, short, tall.

Last night was our methotrexate shot. OUUUUCHHHHIEEESSS. I always have ice cream on stand by. As soon as he saw me coming he locked himself under the covers. It was so cute. I hate having to do it. But as I said before, he understands. I told him it was time and that I would do it as quick as I could. He crys but his recovery time is just a few minutes. He is glad to have it over with, as am I!

I am happy to report that yesterday was a no accidents day in the potty training world!

We had fun visiting with Auntie Colleen yesterday. Gary managed not to break anything.

Krya's on TV!

Click HERE to watch Krya's Channel 8 news story. This is so great!

Monday, September 21, 2009

Today is

NATIONAL MYOSITIS DAY
Raising Awareness


SUPPORT GROUP

The Bradford's went to our first support group meeting yesterday. It was great. There were 6 other families there. We all went around the table introducing ourselves. I could have talked and talked and talked. I was so disappointed when it was done. I thought to myself, that's it? But we did go 2 hours. Our leader brought in a child psychologist to speak with everyone and answer our questions. She pointed out how it is much different for our family because Gary is so young. He cannot tell us what is going on in his body and how he feels. He can only express it. She said it is important to let that happen through playing. I immediately interrupted her and said, "is that why we have all been getting slugged with a plastic baseball bat? With no warning!?". We all laughed. One of my questions has been regarding Gary's pain management. I feel it is a little late for that since we are off our weekly treatment and on to monthly treatments. But, I think the once a months might be tougher. We will see. A lady gave me her card to email her or call her with questions I have about easier ways to get IV placement in. My favorite part of the meeting is when the group brought up the convention that took place in January. One of my favorite names came up! I could not believe it. Kya! When the parents started describing another two year old from Oklahoma who had just been diagnosed, I immediately interrupted and said, "what was the family's name?". As soon as I heard the K sound I knew immediately exactly who they were talking about. I felt like saying, "yeah, Kalee is a good friend of mine." LOL. But I couldn't say that in fear they would think I was looney toons. (Kya's blog is to the right or click on her link, I follow her religiously.) But I thought how neat, all the way up here in Seattle, Kya from OK came up.
Our meetings are going to be once a month. I can't wait for the next one! The three kids played with volunteers in the next room over. It was nice having adult conversation.

Saturday, September 19, 2009

LAB Results from Friday

Labs looked good! Gary's LDH level came back down. No abnormal results from the glucose test. Thank you Lord. I would have hated to add that one to the menu. Gary has been great as usual. He is back to the going NON-STOP. Never rest. We are even potty training. He is doing pretty good. I think I may have bought my last back of diapers! I mean we don't have it all perfected but everyday he is doing better. I even took him on errands and no accidents. He has most his accidents at home when he is too busy playing. He woke-up last night needing to go, but wouldn't do it in his diaper. He was confused and asked me to change him. We are really looking forward to his weight coming off so we can have our little boy back. However, hugging him brings much pleasure. He is huggable, and soft. He has a beautiful personality. "I love you Gary." He responds in surprise, "Me Mom?". Yes Gary, you. (Looking forward to my own weight coming off too, LOL, and I don't even have steroids as my excuse). Anyway, here is to smooooth sailing and praises all go to Him.

Special Prayer Request
We are asking prayer our mothers. My mom is having surgery on Monday. We ask that everything go well and she heals well. We are asking for prayer for my mother-in-law. We pray for the cloud to be lifted and she start feeling better soon. Please guide her to You and ease her pain.

Happy Birthday to my nephew Preston. He is NINE years old today. I love you buddy.

Monday, September 14, 2009

Labs on Friday

We have our first lab draw on Friday to check levels. His aldolase from last week seems to be creeping back up but I think it's Gary's way of driving Mom crazy with worry. So I am not. For the past two days he has had extreme sweating. The sweat was pooling up under his little eyes and his head was wet all day. He was running and around playing. I acknowledge that. However, none of the other children were drenched. They all look completely fine despite that it was warm. So I decided to call the doctor to ask if it was a side effect of the new blood pressure medicine he was on. The nurse said that it is a side effect and to make sure he is drinking to keep him hydrated. She later called back however, to say that the doctors said that is not from the medication. They want to test blood sugars when we go in on Friday. He hasn't had much trouble with the profuse sweating today so we shall see. I did read up on it and steriods use can cause diabetes. Like I said before, I will be surprised if it turns out to be that. Other than that Gary's energy is never ending. Trying to get a two year old to take it easy is not easy. He could step into the shower very easy last night but with all that he does, I would have trouble lifting my leg too! Geeessshhhh kid! :)

Friday, September 11, 2009

Wednesday, September 9, 2009

I wish I could....

Get into my babies mind to tell him that this is the last time for a little while. This is the last needle, just take one more. We will have a break after this last poke. Try not to scream and be as tough as you can. There is a reason why I can't. Because in the same breathe I would have to say I don't know if we will get a break from this. I would tell him SCREAM as loud as you want baby. You have every right. I can't make you any promises. How glorious it would be to tell a two year old that God does not give you more than you can handle. How wonderful it would be if he understood. The IV's were terrible. He screamed and screamed like it was the first time. When he blew his IV this time, he screamed. He grabbed for his arm as if a large hornet was stinging him. The nurse had just tried to push benadryl and it was a no go. She tried to flush it but for whatever reason it seemed as though the break in the vein was higher up in his arm. She tried to explain that it wouldn't hurt his arm that high up. I said "well something isn't right, turn it off and lets call the IV team." He immediately fell asleep after it was shut off. So of course we had to wake him back up to be poked again. He cried so hard he had the after burn cry. The intermittent deep sigh gasp breathes. Once the benadryl was finally on board he slept in a pink benadryl cloud and we were able to turn the IVIG up to max volume and get the profanity out of there.

Of course I arrive home with emotional luggage that I dare not show at the hospital. Not able to take another word into my brain without releasing. Who cares if it was the last one for awhile. It did not make it any easier. I still am not sure if we will make it a month without seeing at least seeing the doctor. When asked about his levels and the LDH being up their response was a bit comical. Both doctors seemed to try and search for words at first and fumbled, as if they weren't expecting me to bring up his levels right off the bat. I laughed and mocked them tenderly, "a a da be ba levels." They said the LDH could be up for many reasons. We will wait for the ALD to come back. I am not sure they will change course until next weeks levels come back in from that blood draw. They will also be checking his white blood cell count. The white cell blood count elevate when one is sick. Gary's levels go lower because they are knocking his immunity down. They have to moniter that level to determine next months dose of Cytoxin.

Through my eyes.

Tuesday, September 8, 2009

So far so good.....

We are in the hospital tonight. We are taking our last visit out with a bang. Gary will not have to come back for one month! We will still need to run up to our pediatricians lab for blood draws but this is great. The IV went terrible. Our room is small and we are sharing. But this is our last one for a month so we are going to tough it out. All the meds have been delayed so we have not even started any drugs. With a smile right?! When they put the IV in no labs were ordered. He had to get poked twice. HOWEVER, there as been talk of a gentleman by the name of Hector. Hector I have heard of a lot but never had the pleasure of meeting him. We got to meet him tonight for a lightening quick lab draw. You should have seen this man. He like threw the need into Gary's arm so quickly! If Gary had not been already crying, I don't think Gary would have noticed. It was truly amazing. HECTOR is my new best friend. I asked him if he would like to draw up a contract with the Bradford family. I told him when he walked in, "Hector, your reputation precedes you." Well it certainly did. I will believe the once a month thing when it happens. I must be in a mood. I am sure it will be. We did get some preliminary labs back and his LDH popped up a little. But that could still be ok with them. I am so happy though that they are telling us just once a month! Gary's limp is better. He is a little stiff after sitting for awhile and when he wakes up. It usually works itself out.

Since all the family is out of town, April has the kids tonight. Since she has three of her own, it is kind of a big deal. Thankfully our children pair up nicely. Just the same I am grateful.

Thank you to our anonymous angel for the gifts in the mail. Elexis got herself a new pair of boots that she was thrilled with. She pranced around the house with a big smile. THANK YOU. May blessings rain down on you. HUGS N KISSES! A really tight hug.

I can't hold it in, my baby sister got engaged. So if she asks, you didn't hear if from me! SUPER excited and so Happy for her. I love her so much!

Saturday, September 5, 2009

Adopt a Room

I just listed a couple new blogs that I am flowing. One is Hearts4Kyra and Josie's blog. I found an amazing website I want to share with everyone on Josie's blog. I was so moved by the vision of adoptaroom, I sent them a personal message saying how wonderful their work is! The website is www.adoptaroom.com . I shared with them that being checked into the hospital over and over again these past months always came with anxiety. The anxiety of whether or not we would be sharing a room or how small and uncomfortable it was going to be. I don't mean to sound spoiled or ungrateful. But when checking in, it would make my lip quiver thinking about how this stay would go. Let me know what you think of this website!

Friday, September 4, 2009

IMPORTANT ANNOUNCEMENT

Mute music to the right, then push play!

video

Thursday, September 3, 2009

Scheduled

We have another study swallow set for tomorrow at 10am. I told the doctors on Monday at the last appointment I have barely been using his NG tube. Praying they give us the clear to take it out. I am going to take it out for the study. I hope no one is too shocked when we show up with no NG tube in. He has been doing fine with food. I only notice small instances of some pooling in his throat. We are still scheduled to go in on Tuesday at 2 for our overnight. This one is going to be icky because we also get IVIG which means we are there what feels more like 2 days. Gary's methotrexate shot went very well. Daddy sat him on his lap and they played let's hide under a blanket. Gary was wise to us however. He cried but we were able to blame it on a bee. I rather have him scared of bee's instead of me! His energy continues to be really great. I was thinking how weird it is that we are tapering steroids, yet his mood swings and temper have only gotten worse. Yes, he is two. I remember. His strange limp seems to be getting better. The more he moves the better it gets. If he sits or lays for an extended period of time, that is when he is the slowest.

We had a wonderful time at the Mariners game last night. It was last minute. I pulled the kids out of school early. It was so much fun. They were sitting in the office waiting for me with this look of freight on their faces. Elexis instantly asked, "Are we getting our flu shots?!". I said, yes that's it, your flu shot. McGuire later admitted to me he thought it was about Gary. Sad! I laid the Mariner blanket out on the back seat of the car. I put McGuire's Mariner cap and Lexies pink foam Mariner finger on the seat. I hopped in the car before they did and put "Swing" on by Trace Adkins. It was so fun to see the look on their faces. They were so happy! My sister took Gary home with her so it was just us four. Exactly what we needed. They game went quick. The weather was perfect. A very special thank you to JP & KP! :). Thank you for continuing to bless my family.

Wednesday, September 2, 2009

Conversations, talking it out helps

We took Elexis in for a rash on her arm that we have been fighting for awhile now. She has eczema that bothers her and becomes infected at times. We paid a visit to our pediatrician to get some antibiotics for her. Of course, with Gary in tote. How do I explain Gary's energy. Let's just say I joked around with the doctor asking if he had any downers we could give our little rocket ball. Goodness. I think he was thrilled to be there because he knew we weren't there for him. I did have the nurse do a quick blood pressure check on him. It was high as always. I suppose it could be higher if he wasn't on medication to help control it. Our pediatrician who we have been with for ten years now is terrific. He asked how everything is going. I told him good. I let him know we got to take a break this week from our IV Cytoxin which is good. I did voice my frustrations I have sometimes with the many doctors we see and the many opinions that come with it. I told him about Gary's odd limp that I was concerned about. He did such a great job talking me down from the ledge. I expressed my concern about there choice not to investigate it further or at least really explain to me why we are going to wait and see. He pointed out to me that MRI, X-Rays, ect, are all great and fine. But what ends up happening is sometimes we end up chasing tests. We fill Gary up with a bunch of electromagnetic waves, (which no has proven is or is not harmful) to possibly find something. That leads to another test, and then sometimes another. He said, "We would rather treat the human, and not the tests." I told him that made perfect sense, but what if he had lets say, (oh mother's imaginations can think of just about any horrific thing, especially mine) calcinosis in a joint. He responded with, "What if they did? That is very hard to treat. There is not much they could do for him if that were the case. You wouldn't want them to preform surgery, that would not be the best for someone with on immune suppressing drugs." (I am a processor. I need to time to review the info in my head. I understand everything but the questions don't come to me right away. So when the doctors ask, did you get all that? Do you understand or is that alright with you? I just want to say call me when I get back on I-5, that is when the questions come to me. I feel like it is unfair to the doctors, because if I could think of what I wanted to say right then and there, they might get less of a bad wrap or rap ; ) ) We talked more about the different styles of doctors. He brought up our visit to Chicago. He said he got the report from Dr. Pachman's office. I was surprised! I hadn't heard anything. I have been so focused on his current treatment, I just figured Seattle Children's would get it. He said it didn't have any new information in it, and that Dr. Pachman agreed with his treatment. That was good news. I was happy to hear she agrees with the path we are on.