4/10/10-A day at Scottish-Rite

So, I'm still getting used to posting pics. These are completely backward order, and I don't know how to move them around in my post. Hopefully you'll get the idea. Because J's medicine started so late yesterday (4:30), they can't start his medicine today until 2:30. I arrived at the hospital this morning at 9:30, so that Paul could take D to his soccer game. J had been playing some DS, so we took a break and decided to head outside. Actually, at first we were hoping to go to Child Life here at the hospital, not realizing it was closed on the weekend. Last time J was in the hospital, it was a Mon-Wed., so Child Life was available all the time. We had forgotten that it was the middle of the week. Oh well. It led to an even better idea. We decided to take a walk outside and go to the park. We headed back to the room to get sunscreened, and then outside. What a beautiful day!!!!! It was so nice to spend about an hour walking around in such amazing weather.

Here is J in front of the entrance sign. We had a great time exploring the campus. It was really nice to walk and chat with J. He has so much to tell me, and I love every minute of it. He loves to chat about the new books he's reading. With being unable to play at recess or particpate in gym and now a long hospital stay, J has been reading through a TON of books. I'm amazed at the number of pages he can read. Seriously, he's read through about 7 or 8 books in two different series, totalling a couple thousand pages. It's unreal! He's getting read to finish a book right now. He's trying to save the last 100 pages until his infusion starts ;)

Walking through one of the gardens. There are tons of beautiful places on the Scottish-Rite campus and it really made our walk this morning enjoyable!

Isn't this rose beautiful? I just had to take a picture of it. Actually there were many to choose from.

Playing with the funhouse mirrors on the playground.

Another angle....I didn't look too attractive in my picture, so I'm choosing not to post it!

All smiles!

One thing J loves while being in the hospital, is the almost unlimited DS time. Normally, we have a pretty strict DS/Wii schedule. But the rules go away on hospital days. We definitely have lots of other things to do, but he is getting PLENTY of fun time with the DS!

Easter 4/4/10

I was getting ready to post about IVIG, but when I started uploading pics I saw some Easter ones. Thought I could do those of the boys first and then do another post about IVIG. J had just had his port surgery on Friday, so we didn't make any big plans for Easter this year. We just didn't know how he'd be feeling after surgery. Obviously from these pics, he was doing pretty well by Sunday! I thought these were the best of the bunch.

J on a mission. Looks like he's feeling pretty good, huh!?!











Here's D-man, having a great time with the challenge of hunting for the eggs. We have a really small back yard, but Paul did a great job finding some tricky spots to hide the eggs this year. The boys LOVED the challenge!

My boys just before the egg hunt in our backyard. It was just us this year. No mass egg hunts with thousands of children, thousands of eggs, and massive headaches! :) Just a fun hunt in the backyard.

Love my boys and all that they mean to us.

J is in Surgery 4/2/10

J is in surgery right now, so I thought I would distract myself by learning how to upload pics easily from my memory card. Everyone should be so proud of me!

I've had a knot in my stomach this morning. This is such a new experience for me. I've always been able to not dwell on the bad stuff, focusing on the positive. However, it's just different when it's your kiddo. I have to consciously choose to focus on the good things. Breathing prayers to remind myself of the Lord's faithfulness. Wow! How unable am I to go through this on my own. How much I've realized I need the strength of my family and friends to go through this. How dependent I am on the encouraging words of others when I don't have it in myself.



J is such an amazing kid. I love watching him. He makes me a better mom through all of this. He has such strength and bravery through all of this...



It's now 9:47...I really think that we should be hearing from the doctors at any moment....ooh they just called. Signing off.


I'm back. It's 10:15. Paul is back there with J right now. We can only go one at a time. The doctor said everything went really well. The port is in a good position. Just need to watch the healing of the incision. His skin is very fragile from the steroids he is on. Thankfully, he'll have a week to heal before the next infusion. And then, I THINK, it's a month between each IVIG infusion. I don't know if they'll still be doing the solumedrol every two weeks or not.

Here is J getting ready for his first baseball game of the season on Monday. He'll be off for a couple of weeks, healing from the surgery, but I thought I would include this picture of him being his regular self.

Surgery Scheduled

Surgery is scheduled for April 2nd, Good Friday. We met with the surgeon this afternoon. He has quite a title: professor of surgery, head of general surgery, head of pediatric surgery, and head of cardiac surgery. Wow! Thankful for his level of expertise!

Of course through the visit, the doctor had to give us all the negative possibilities as well as the benefits. I didn't like hearing all of those, but this should make the infusions much simpler. I know that's just part of it, but I think I was wanting more of the cheerleader type conversation, where he told me how this was going to make everything all better :) That's not exactly what he said, but he did say this should give his veins time to rest and heal.

J had a hard time this afternoon. It's hard to know what is 9 yr. old boy pushing the limits or steroids causing the problem or frustration with all the medical "stuff" going on in his world. He was quite frustrated as we arrived at home after the appointment, only to find out we were leaving immediately to go to baseball practice. When I say he "found out" that we had to leave immediately, what I really mean is that I mentioned it several times on the way home, discussed it with him, told him what we would do to get ready to leave, and he said "okay"! However, once we arrived at home, it was quite a different story. He was UNHAPPY with me, to say the least. However, we still headed out the door to practice, just with a few less Wii days for J. It's difficult right now to get to the root of what is the problem when he is upset. He's very intense, which I'm certain is from the steroids in his system. I think his frustration with everything comes out all at once, if given the opportunity. My goal is just to be very consistent with him, not allowing him to be disrespectful, but to understand that he probably doesn't understand all that he's thinking/feeling. So, I dropped him off at practice, and I went to Academy! By the time I got back, he was having the greatest time and was in a much better frame of mind. As soon as he hopped in the car, he apologized so sweetly...and again at dinner.

So, that's our life now. I thought I would add a picture the update this time. This is a picture of J at the art show for his school. His piece is the fish over his head on the yellow paper...just in case you thought he drew the princess picture beside him. Thought I should clarify that. So proud of that boy......

Consultation with Surgeon

We have our appointment for a consultation with the surgeon scheduled for this afternoon at Children's. I think it'll be about a 30 minute appointment. Quite a few questions. Although getting the port will make this process easier, I'm starting to get a bit nervous.....I'll post again after the appointment with information as to when everything is scheduled.

Another Post-Main Event

So yesterday after we finished with our appointment at S-R with J, we took the boys to Main Event. Our boys LOVE laser tag. We all really have a good time playing together. D waited a "long" time, in his mind, to finally be tall enough to get to play at Main Event. Now that he is past the 48" requirement, we all enjoy going together. This is one of the joys of being a mom to two fun and active boys-playing Laser Tag.

At Main Event, they have Monday Madness from 4-9 (or closing?). During this time, there are 3 options: 9.95 per person =unlimited bowling, laser tag, and billiards; 9.95=unlimited Fun Card (video games); 9.95=$20 card (good for other non-video games, i think for snack bar, etc). Anyway, it's a really great deal, especially for the unlimited bowling and laser tag. Since we're not going anywhere for Spring Break, this was a fun way to spend the evening. However, let me tell you, apparently everybody else knows about the great deal during Spring Break! We've been there before on a Monday and did the same thing and it was really easy to participate in all the activities. This time, it was incredibly crowded. We still had a great time. We were thankful we arrived right at 4. It was already pretty crowded at that point, but it only got worse later. In between waiting for either the laser tag or our bowling time, we used our unlimited video game card to keep the boys occupied. That was just as much fun for them.

It was a great evening, despite the crowds. We shared a lot of laughs during the bowling, burned off some energy during the laser tag, and just enjoyed being together. Tony, Paul's nephew, also joined in on the fun. That made it that much better. Of course, since he put us all to shame in bowling, we might not invite him back (ha!). We LOVE having Tony hanging out with us. He's great with J and D. They love having him around.

So for those of you looking for a relatively "cheap" family night, Main Event Monday Madness is a good deal.

J Appt. 3/15/10

Well, I'm so thankful that I did not have to post more over the weekend. That means that everything went really well with the infusion. The line still seemed a bit sluggish starting on Sunday, according to the nurse, but I think the increased heparin definitely helped. This was our easiest infusion so far.

Yesterday we had our appointment at Scottish-Rite. It can make for a long day of waiting, but we were prepared with books, DS, games, etc.....D was able to spend the day with Aunt Cheryl. Since it's Spring Break, he was going to have to come with us. That made the entire process much simpler.

The doctors all had good things to say about J and his treatment. A big highlight for us was that J made a 52 on his CMAS test. It's a strength test that the OTs/PTs administer every visit. This is the first time J has been able to get the full 52 points. He was able to do all of the types of sit-ups that they tested, plus he was able to keep his chin raised to his chest for the full 2 minutes. Those are the areas that he hasn't been able to do as well before. We were all so excited for him. There was some cheering going on in our room as we celebrated. It was wonderful having some measurable improvement during this process. Also, our doctor said she was VERY pleased with the progress J is making. She could definitely see that the rash is decreasing. That was such wonderful news to hear. During our last two visits, we've walked out of the appointment not feeling so great about things, so this was a fantastic change of pace.

The port has been approved for J, as I've posted previously. Now we're just waiting for the two hospitals to coordinate. It will be an outpatient surgery, most likely in the next week or two. We have a bit of downtime through all of this. Paul and the boys are going camping on a Father/Son camping trip with other guys in the neighborhood the last weekend in March. The doctors said that should be no problem to keep that on the schedule. We are so thankful that the doctors not only "allow", but encourage us to keep letting J be a kid! That really helps the morale around here :). The next new thing will be the IVIG infusions. J will be admitted again over the weekend of 4/9-4/11 for his first infusion. They will double up the Solumedrol and the IVIG, so the infusion will be about 12 hours each day. They start the IVIG medicine really slow, to help minimize the side effects. Plus they start with benadryl and tylenol, to counter the head aches/miserable feeling. Dr. Nassi said she has administered this medication to many kids, with only one extreme case of headaches. She had to tell us the possibilities, but she said they are more common in teenage girls or ones who already deal with headaches/migraines. Praying, definitely, for no complications with the IVIG. As we know more about the specifics about the surgery, we'll let you know!

Thanks for all your prayers!