Monday, August 31, 2009

WE ARE HOME!

I just want to cry. God is so good. I am making chocolate chip cookies for the kids. When they walk in, the house will be filled with the smell of cookies and there Mom is HOME!



Gary did great. We have a few things we are keeping an eye on. Last night Gary took a two hour nap. When he woke up he was very unsteady. He would not walk on his own unless he was hanging onto something. It started working itself out but then he wanted to go back to bed. He woke up again, able to walk and take steps. However, the steps were not right. The doctors said that when he is stepping he is locking his ankle. The could not get him to say "Ouch" when they manipulated his ankle and legs. It looks to me like it is coming more from his hips but I am not sure. We are home though. They told me to keep an eye on it. If it gets worse I will be taking him back in before next week. Our next overnight stay is Tuesday. The are doubling his Cytoxin dose and we will get IVIG. I don't like the way he is walking funny but not complaining of pain. But I don't like a lot of things, so that doesn't say much. They still feel like the red fingers and face and feet are from the drugs.

Sunday, August 30, 2009

Next

So we have an appointment on Monday. My message said we might keep you overnight, we might not. Ohhhhh let it be not. It will depend on his levels and how he is looking. In my opinion, he looks great. I think our red rash as really backed off. I am always looking for it. A little to hard at times. His fingers were so red pink last night after the bath. I was thinking my goodness! Your fingers are crazy right now. No s t o p that. Then my daughter came in the room wrapped in a towel. Her fingers were the same color! I had put one of those bath fizzies in there bath. They were picking it up as it fizzed. It was hot pink. It temporarily stained there fingers! HA!

I found out I can make Gary suddenly bawl hysterically at at a moments notice. "Gary, are you going to sleep in your own bed tonight?". Not even preparing him for it works. This will be a slow process getting him back in his own bed. We were totally there before he got sick. I was really tough on him when he wasn't sick as far as you must sleep in your own bed. But given his reaction to a simple question says TRAUMA. He of course is a little traumatized with the whole thing. The best part is it will go away. He won't remember. Well I hope he doesn't. It is why woman keep having babies. We forget the pain. Speaking of babies, my daughter asked me or rather told me that she would like me to have a baby girl. I told her that Daddie and I don't make babies anymore. She stopped. "Mom, yes you can. Yes you do". I told her no, we really don't, not wanting to go into details with a seven year old. Suddenly she says, "Oh Mom, that's right. That's right," pausing to sigh and shake her head. "It's because of that surgery Dad had on his 'woo hoo' long tine ago, huh?". Yes, Lexi, the woo hoo surgery. Oh good Lord, the memory and the attention these children pay. So endearing. So embarrassing. I love it.

*Yes, it is 3:18 in the morning. Sometimes I just wake up. I hate that.

Prayers that we get to come back home this Monday instead of staying the night. Prayers for the children's first day of school on Monday. My heart is a bit broken they are heading back to school. The summer was like lighting. A fast flash. This time next year, I hope we are able to make this summer up to all three of them. Each year we have been going to Fish Lake and camping. We didn't get there this year but that's ok. We are always on the look out for our favorite, a tent trailer. Our family loves to camp. Ok, I love to camp. Anyway, I would love to be here for when the kids get home from there first day of school. McGuire is in 5th grade, and Lexi is in 2nd grade.

The Big One from 2 years ago

Wednesday, August 26, 2009

Bad Mom Day

I had one of those days where my head just seems to be elsewhere. That can be risky for a mother of three. Proof I was being a bad mom? Well you read my previous post about the less desirable music I let them listen too. Then there was the medicine. I had just had Gary Plaquinel refilled on Monday. The bottle consists of eight pills. HOW in God's name he got a hold of it, I have no idea. HOW the lid was off and WHY. Ugghhhh. Gary was quiet for awhile and I thought, how nice as I was cleaning his room upstairs. I moved a blanket and a pill fell out. My daughter said, here mom, here is a pill. ALARMS in my head went off. What would a pill be doing on the floor. Huh. Oh well back to cleaning. Gary was now with me at this point. A few moments later I head back downstairs to find the scene of the crime. There they were. Eight white pills spread out in a scattered fashion. Powder residue coated the leather. I immediately gasped and ran to find him. He looked fine. No changes in color, breathing, nothing. I asked, "Gary, did you get into medicine." He just looked at me. "Gary, did you eat any?". He said "No, icky." He had even taken the pill cutter which contains a razor blade had began chopping them all up. The reason for the white powder residue. My hand was on the phone ready to call Children's to see what my concerns would be. You know, what to look for. Before I did though I took a deep breath and pieced them back together. All eight pills were accounted for. He had not consumed any of them. Now celebrate that he is back ladies and gentleman. He is back to getting into any and everything. We even had to lock the front door today because he kept going outside naked. Quiet is not a good thing. I have to get use to that again. Another side note: Gary has had a few distressful episodes with swallowing today. I am not concerned yet. May have just been an off day or maybe he was just tired. The distress did not come the point of actual choking but mimic'd that sensation. Keeping an eye on him. His skin is still showing signs of activity. Redness that comes and goes. Extreme episodes of localized itching, then it goes away. But it seems to have subsided a bit. The whole cherry on top though was tonight when I went to give him his nighttime medicines, another medicine I just had refilled was all gone. The lid was not on tight so it leaked out in the bag. WAAAAHHHHH! How did that happen? Time to start being very careful.

I miss my husband. He is home from umpiring but is always really tired understandably.

My Posse

This evening on the way home from a shopping trip an old time favorite of mine came on the radio from when I was a teen. Reminder that most teenagers are stupid and make dumb choices. I was NOT exempt from this stupidity. Anyway the song was Sir Mix-a-Lot, My Posse's on Broadway. All the kids were in the car. Of course it propels me into a happy nostalgic mood, up goes the volume. The whole car consists of my ten year old son, seven year old daughter, eight year old nephew, and two year old son. The car becomes electric. Out of the corner of my eye, I see heads bopping back and forth. Limbs and bodies bouncy to the beat. I even seen my ten year old observing himself in the mirror as he does his moves to the music. The words are inappropriate at times but hard to follow so I didn't worry. All the sudden I became a little emotional. I thought back to when I was young, out with my friends or my older sister. How cool my "posse" was in the car. At one point even smoking, feeling cool, but hating every minute of the taste, but it was cool. Especially with Sir-mix-a-Lot on the radio. My emotions shifted to a happy satisfaction. So this is my new posse. My chubby two year old, perking his lips and slamming his hands together to the beat because that is what the posse was doing. It was as if the Holy Spirit filled me, reminding me, these children are your gifts from Me. Here is your posse. I know, sounds corny, but it was my misty moment. It's my heart.

Feeling a little convicted over the words not being the best, we followed it by a jam session with a song my friend Lynn sent me. The kids know it well from church and really enjoying it. I thought the car was electric with Sir mix a lot song. My entire body was alive. Every hair stood on end as the kids started to not just dance, but each child sang each word. I loved it. I love that they could sing with such love for the Lord. It was truly beautiful.

Of course I still am human and His child and return to my grumpy mood which I don't like to do. It is so easy to fall back into the feeling of everything being a hassle. Now I have to make dinner, which comes EVERY night. LOL Dinner is aggravating. Always gotta come up with something new. Truth be told, I am so happy I can and God provides.

Article

I found this article http//www.i-glassesstore.com/treatmenttherapy.html. This patient is actually in Seattle. So neat!

Tuesday, August 25, 2009

Time 2 Unwind

Gary's levels were good this week. The doctors liked them. We talked extensively about the "flares" he has been having. The doctor I talked to this week discussed how she does not want to go chasing a skin rash. I am still processing that one. Nor do I want to go chasing a rash with toxic chemo drugs. But it makes me doubt whether or not this disease is actually going to stay quiet once we ween him off the steroids and chemo. The doctor thinks the redness may be a side effect of the steroids. Another hmmmm. I don't know. I think it is the dermatomyositis, but I could be wrong. The reason I think it is the dermatomyositis is because it is acting like the rash that presented on April 19th when we started this journey. At the time, I was treating him with Children's Clariton and Benadryl. He would suddenly have a rash, didn't matter where we were at or what we were doing, BAM there was this rash. This past week he has done the same thing. He will suddenly look like he is sun burnt and then it goes away. Just like it did in the beinging. Tap, tap, tap. Hmmmmm. It then again could be from the steroids. But it would be the FIRST reaction to the steroids since he first started them in May (Besides the excessive weight gain, unusual hair growth, and mood swings). It also makes me wonder, why would have a reaction to the steroids when they are tapering him down to a lower dose. It is hard to decide whether to push for a wait and see, or push for the OH NO you don't. Don't back off on treatment now. This thing is not finished or is starting up again? It is difficult to do the "Wait and See" approach. It is just as difficult to insist they keep pumping poison into him. We continue to struggle with Gary's blood pressure. It was 146/87 in clinic. They brought in a manual blood pressure machine. It was better but still high for his age. While sleeping it dipped way low to 107/32. They were kicking around the idea of changing his BP meds. Once it went to low, the doctor decided to keep it as is. Back to his levels, sorry to jump around here. His levels popped up the week before last. That week the entire Juvenile Dermatomyositis clientele's also did. Lab error???? It seems funny though that the rash activity went right along with it. I am thinking that we will try to go every 2 weeks with the Cytoxan. That means we may have to go back to the weekly at home injections of Methotrexate. Whooooppeee. I have had that part easy. I will have to start practing again. Any volunteers?

AND YES, I know God is in control. I do not doubt that. God blessed me by making me Gary's mother. I don't take that job lightly.

The pinched nerve in my neck is great fun. I love advil. Gary and I had a long night last night. Up every 30 minutes for vital checks, and diaper changes. I finally fell asleep for 30 minutes straight and had a strange dream my IPod cracked in half while at the ocean. Then there was this Mexican guy who had an NG tube who kept flipping it at me. LOL.

Friday, August 21, 2009

Levels

Ok so yea his levels were back down again which means they will not pursue other medications as long as his levels don't change next week. I mentioned his new increased rash activity returning but they said they will check him over on Monday. It will be decided which direction to go from there. His energy is amazing. I love it. He has leveled out to being happier towards the end of the week. His personality is wonderful. He is doing this squeal of delight that brings my heart great pleasure. He started a new sound this week. The "th" sound. It comes out as just 't'. So we ask if he would like to take a bath. He will repeat, 'BAT' in agreement. Robert has been working quite a bit. It is endearing to hear him ask about Dad throughout the day. I am not looking forward to the kids returning to school. :( Gary enjoys his siblings very much during the day. I am a bit more at ease since my last post. It takes me a couple days to let things settle as far as my emotions. I get all unwrapped up just to get all wrapped back up again on Monday.

*Happy note: I just made contact with a friend I met in High School. I have been looking for her on and off for years. Gotta love Facebook! She is from South Africa and beautiful as ever!

Also in the right hand corner down below I have begun to keep track of Gary's levels.

Tuesday, August 18, 2009

Direction

We are back home from our weekly Cytoxin and Methotrexate treatments. Gary is doing. He is doing OK. We suddenly have a return of raging rash activity in his skin. It has me a bit worried with increasing levels. The doctors are talking about adding new drugs.
He has not been this raging red since May when we were first diagnosed. No we were not in the sun. This picture was after an hour after his IV was put in BUT this is not his normal. It is really tough seeing different doctors each week. It may be time to but our back up plan into action. DR. P Our main doc was not there this week so I had to deal with all the nonsense. Nonsense of starting a drug that I thought we should be on. There talking a completely different one then our doc talked about. "Maybe Cytoxin isn't his drug." Maybe I should lay on the ground and kick my feet and grit my teeth and scream right in the middle of the hospital. I know that will get me know where. Profanity. His levels were good I guess. The one that was up last week won't be back until later this week. I fought to get the tube out but I lost my debate. It ended with this. "Do you know how to administer the heimlich to a toddler? What if he was choking on a hot dog. " My reply, "I don't give him hot dogs. There high in sodium!". We had to increase his blood pressure medicine because that has been up since last week. Obviously we did not do any tapering this week of his home steroid. His knuckles and hands have begun to break out again in the Gottrons Papules . Would make no sense to taper off again. The activity in his skin especially on his face is evident. I assume they will be calling me this week to discuss. Or not since we go back in on Monday. My positive piece for this entry, we had our own room. No hallucinating patients this time. Nurses were great. I love loved our nurse when we got down to the our room. She was on top of everything this time. It must have been National Intern Med Student day or something. A whole lot of them were peaking through the room. I would have let them in but he was fast asleep. Next time.

Thursday, August 13, 2009

In honor of my Father-in-law

Last year at this time we were driving back and forth to Portland. It was awfully errie to be at my sons hospital bedside exactly a year later. I remember when we first walked in to see him. His gentle 'Hi, how are you' I can still hear clearly. Grandpa Richards ashes were spread over the ocean yesterday (8/24/09) on what would be his 59th birthday. I wish we could have been there for that. Healing is not an easy thing for anybody. If you decide to watch the memorial video, don't forget to mute the music on the right >>>>>>.

video

8/24/50 ~ 8/26/08

Calm

I have finally found a calm place in my mind again. I am preparing my heart and soul for the future. I am not always going to hear what I want. These past couple days have bit a stressful. Gary did not pass his swallow test. The NG tube stays. I was able to buy Gary 2 weeks. In 2 weeks if he does not improve with his swallowing, the situation will be reaccessed. We came home from the hospital at 1am (since we went past midnight it was Wednesday) but really Tuesday night. The intern doctor came to talk to me about going home. The look on her face wasn't good. I thought she was about to tell me they wanted us to stay. For whatever reason, Gary did not tolerate the IVIG this time. Every time we turned it up his blood pressure went up. Not sure if I put that in my last blog. Anyway, I thought for sure she was going to say stay but she didn't. She felt comfortable sending us home with the understanding that I take him to his pediatrician for a blood pressure check. She discussed with me that the swallow study report had not come in yet. She called me at home the next morning. We talked about his blood pressure and how it would be ok to have it taken Friday. Then she went on to talk about the swallow study results. "At this point we are recommending G tube placement," says the doctor who knows not! She told me that it had been discussed with the team and if I would like to schedule the surgery there at the hospital then they would be more than happy to set that up with his over night stay. Going into details as such. Right. For those of you that are not familiar with the different between and NG and G tube, I will tell you. NG is what Gary has now. A tube goes in his nose, down the back of his throat, right into his stomach. A G tube is a piercing or puncture threw the skin into the stomach. It allows patients to eat by mouth more. The NG tube seems to be interfering with his swallowing somewhat. How much, we don't know. Right away I said "ok". Simply ok. I knew. I knew it was all crazy talk. I called the nurse I always talk with right away. Here is my message, "Yes, this is Erika Bradford, Gary Bradfords mother. I need for Ruthie to call me right away. I need for Dr. E to know that interns are calling my house trying to schedule a G tube placement. Please call as soon as possible." It took awhile but they called me back after about an hour and half. The information was what I thought. They said NO WAY. Not true. That is not happening. Thanks for getting me all uppity people! Unfortunately she had other things to discuss with me. She explained that Gary's levels went up again. That was up again from last week. Ruthie told me that Dr. E would be calling me because they needed some time to figure this all out as far as where to go with treatment. Later that evening I got the call from my favorite Dr. E. She explained she was a bit confused on why his levels are climbing back up. She asked me what I thought about placing a G tube. I told her I think he needs more time. Time to improve on his own. The thing I don't like about that is he has seemed to back off of his improvements. He has come so far, recovering great. But it has seem to stall. I have no further improvements I can note. Still not stepping up or down stairs, and has exsisting tenderness in his knee and hips. I am confused on why she is confused about his levels going up for the second time. They have decreased his steroid for the third time now. Results: his levels went up. Hello? It is hard being a mother without the medical knowledge. I know there is an explaination why this isn't completely connected. She said his levels may have gone up because we skipped our Friday infusion for the concert and didn't come in till Monday. But his levels were up last week too and it had only been 7 days. I explained to her that I don't think it necessary to remind everyone that this disease came to the front door. We bolted the door. It can easily be running around us to go thru the back door. So we are going to wait. We go in on Monday again for our regular infusion of cytoxin and methotrexate and most likely steroid pulse. If in two weeks is levels have not turned around the other way and his swallowing has not improved, then there is talk of adding a new medication. We will revisit the who G tube thing again in two weeks has well. (Between you and me, I am going to fight that one all the way).

We have all been already a little sore over the approaching one year anniversary of loosing Grandpa Bradford. :(

Tuesday, August 11, 2009

Bang Head Against Wall

The sound of the air conditioning fills the room. Alarms and announcements that visiting hours are over break the sound of the electric blow. The vision of home fills my head. My pillow, my bed. It is like watching a faucet drip while someone drives a nail into your back. Slowly the medicine drips. (Ok I will stop the dramatic novel talk). Thank God for my husband who drove up to hospital to give me a break. Gary is not tolerating his IVIG treatment very well. His blood pressure has been going up and down. I can tell he does not feel good. He wants me to lay on his bed for comfort. Then he wants to pound me over my head with his toy. Then he wants me to get out of the bed, oh wait, no back in. All day. Poor baby. Too think he has been laying there all day as well. The swallow study went OK. JUST OK. Grrrrrrrrr. He went from a moderate problem of not being able to clear his food, to a mild problem. The coordination of his swallowing muscles have improved so he is having no nasal regurgitation. We knew that because he was cleared to drink water. It appears there is a little lagging in the esophagus. The fun part about this is the radiologists. Of course you want to know what they think. What I have to remember is they don't know Gary or what his disease is. The radiologist talked about putting a G-tube in. That would mean surgery for direct access to his stomach. She said that she thinks that the NG tube is contributing to the difficulty to clear. So let's take it out right?! Yeah, I wish things were that simple at a hospital. Nothing ever is. I seriously was willing to take the NG tube out right then and there and do the test again. But obviously that is not realistic. I could though. The official report has not come back yet. I talked to the doctor this morning and she asked how it went. I told her. I told her about the talk of the G tube. I shared that they were lucky that I have been blessed with high maternal intelligence so I "psssshhhhhhhhh" it out of my head. Dismissed it has the words rolled off the radiologists tongue. Appreciate the idea but no. No way will I let them put a G tube in. The doctor said she will call me at home about whether or not the NG tube stays or not. I am not sure what they will say at this point.

Our new neighbor is a cute little Hispanic boy whose blood count is off. They think he has leukemia or a virus. Not that I want him to have leukemia but a virus????? Hello, why are we in with a patient who has a suspected virus. Third person: She bangs her head against wall.

I won't moan and complain about the nurses and how things have gone once again this time. Our poor nurse seemed like she didn't want to be there today. I ended up setting up his formula and giving him his medication. And we sat and sat. I know I said I wasn't going to complain but I did, so there. But the new nurse we have is great. I really enjoyed her today. She has been in every 15 minutes taking vitals. Our morning nurse I didn't see very much. I had a feeling she didn 't have the time to do our IVIG therapy so we won't leave tonight till close to midnight. I told them that if we get past midnight I didn't want to have to take Gary out to the parking garage in the cold rain by myself to drive home. My hubby has to leave at 9 because we didn't get very much sleep last night. I didn't get to shower today because we didn't have our own bathroom. I didn't even feel comfortable using the room's bathroom because I had to walk across the other patients space. Wine or Whine I mean. Breaks over.

*LEVELS*
Levels stayed the same this week so we will be back next week. Think I will play dead when they try to set the appointment up.

Monday, August 10, 2009

Rough

We have had a frustrating day at the hospital. But out of all my pants, I got my patience pants on. We were first put in a room with a poor kid we have met before. If you look back in my blog and read about the infusion center, this kid is in it. He was the once that screamed at the top of his lungs "The baby is crying!". As soon as we walked in and saw the poor little guy clutching a pink basin, and heard his voice I knew. I knew I had seen this kid before. His mother is super sweet. But right off Gary and Lucas were not a good match. Lucas has tumors in his spine. For whatever reason it is messing with his brain. He hallucinates. Loudly. Gary was already having a lot of anxiety walking into our room knowing the IV team would follow. Lucas began frantically screaming that Swipper (cartoon character from Dora the Explorer) was coming out of the TV to get him. Over and over and over again. Gary did not understand and just cryed. I could make him understand that Lucas is sick and Swipper isn't really in the room. We sat there for 1/2 hour waiting for our nurse. Lucas however was in much greater need as his hallucination switched from the Swipper to The Grinch. Gary and I went to the play room until they could figure out what to do. We came back for a diaper change to find that Lucas had calmed down. The only problem was that Gary began repeating Lucas everytime he called for his Mom. Again, trying to convince a two year that is not ok is impossible. Hours go by and we waited and waited for the IV team. I did my hot bath trick and wrapping Gary's arms in warm blankets. It didn't work this time :(. It was on the fourth poke they finally got it. We then got word that they would move us. The next problem was that the doctor did not sign off on all of Gary's medications so pharmacy would not be sending them over tonight. I just stare at them. They moved us downstairs to a room with a child is around the same age as Gary. Gotta love hospitals. I know its not the Hilton, but if we are not running meds I could at least be in my own bed. Here is to a better tomorrow! Swallow test is at 9am. Praying that NG tube comes out.

A few pictures from the CureJM Concert


Heading out after the concert.




Gary with his cherished Uncle Bill.



My boys!


Gary is under there somewhere.

On stage with the Smedley's, and the other families.




My babies!



Kristen, Mason, and Damon




Aren't they beautiful?




Are they even more beautiful! The best shot by far!




Gary getting his shirt on.








We are Home and Leaving again..

We are back from the concert and there are no words. It was wonderful. It was....ok here are all the words to describe. Wonderful, emotional, FUN, amazing, Awesome, Excellent! Our family had a great time running around enjoying all the different activities. It was all powered by a great cause. It was not as if we were there for selfish mindless entertainment (although I like that kind too). We were there for a cause. A reason. Sure, it was in the pit of my stomach whole time: I can't believe we are here for not just Mason, but us. Mason. Mason is an inspiration. I am not going to lie. If the Smedley's read things, please please no offense. It was tough. He is so brave. After working up the courage to take Gary up to meet him and his wonderful Mommie, my husband and I hurried away to cry in the corner. Why. Why? Because it is the unknown for us. We were weeping for him and his battle. Heartbroken almost. He is an amazing kid. Gary was thrilled that they had matching tubes. My family was jumping up and down when he arrived. My children came running up to me, "Mom! Mom! Mason is here!". Your a true celebrity to us Mason! Sure Savannah was precious, Jessica was breath taking, but Mason was the man of the hour. I will try and post a few pictures but I am frantically trying to get laundry washed and packed again for hospital. We leave this morning. I will write more on the concert if I get a chance.

Thursday, August 6, 2009

Coming Soon!

I am having fun creating a website. This website will sell t-shirts to raise money for Cure JM Foundation. I am still waiting for quotes on my shirts and things. I am planning on linking it to my blog and asking my friends and family to do the same. It will be a couple months before I am up and running. Hint: Mama Tiger!

Before and After


Gary, March 2009


July 2009







Gary at the doctor singing Winnie the Pooh: *Put Music Player (to the right) on Pause*

video

Wednesday, August 5, 2009

Change of Plans

:( I have been going around telling everyone that Gary's last chemo Friday was last week. Turns out it's not. I called to check on his bloodwork today and his Aldolase level popped back up. They gave us permission to still go out of town this weekend for Mason's Cure JM concert. They said we need come in Monday however. He will continue with his Cytoxin and Methotrexate. I suppose I have no room to complain. So many patients and parents have been doing this much longer than I have. Gary is still doing well. No complaints. But still was a little disappointing. There was another level that also did the very same thing.

I really enjoy an article the FDA put out today about drugs they are using to treat autoimmune diseases. http://www.nytimes.com/2009/08/05/health/05DRUG.html

We are still going camping though now that we got clearance. The doctor said to make sure he is getting his meds, keep him out of the sun, and she will see us Monday. Hopefully we are leaving tomorrow night. We may wait till Friday morning because I am not sure how Gary would handle a late night trip like that. I would hope he would sleep but sleep has been and issue lately. He has not been taking naps because he gets his big dose of steroid in the morning. It has been taking him longer to turn in for the night as well.

Sunday, August 2, 2009

The Plan

So we checked out on Saturday about 1pm. Gary's levels are almost there. A few of them are normal, one is below which is fine. Another is almost there but still on the high side. As I said before, his NG tube stays in until they can do another video swallow to really see what is going on. We find out Tuesday if we are switching to every other week treatments. Gary was a little cranky when we left but perked up when we came home. We spent time with my cousins. I cherish that time. Our family does not get together that often. When we do it is pure bliss. It was the first time since Gary was diagnosed I was able to sit down with them and be an Armstrong girl.









My buddy thinking let's get out of here.


Gary's strength continues to improve as well as his mobility. He is able to pick things up off the ground with less effort. I want to work Gary and push his muscles to rebuild strength. But this morning I told him I would give him a lollipop if he made it up the entire set of stairs (not stepping but crawling up). He did it. He got his lollipop but now he is complaining much more than usual about sitting down but himself and raising a leg. This morning he also had to have his NG tube replaced. He pulled it out in his sleep. Again, I just wanted to leave it out. But I know. We all know. Very soon.

We are also so excited for the CureJM concert in Hillsboro, OR. Our family has not had the opportunity to do anything together this summer because of all the hospital stays. We are taking advantage of it. We plan to do some camping and fishing with The Saas Family.