Cousin Time

We were so fortunate that Ryan's sister was able to bring her kids out to Oklahoma this month.  The kids hadn't seen each other in 18 months, so it was kind of like meeting each other for the first time.  We had a busy, but fun time together.  They were also able to be here through a lot of Clayton's arthritis hoopla, and that helped me tremendously with the little boys.  Aaron was a little cautious around Ryan's sister the first day or two, but by the end of their stay he was actually reaching out for his aunt to hold him.  I think he earned some brownie points for that.

While they were here, we had several fun outings and spent a lot of time just hanging out at home, letting the kids play.  I wish it hadn't been so hot, but we still managed to have a little outdoor fun.  I have a million pictures to share, so if you're not into pictures, you can stop reading now.  I tried to narrow it down.

We spent a lot of time in the backyard.  Water was always involved.  The hose was the most popular toy.  Sometimes a spray was welcomed, and sometimes it wasn't.



We went to the science museum.

These two were the only ones brave enough to pose with Otto.

We went to the splashpad.

 Aaron is my most enthusiatic splashpadder.  He sat at this little fountain for a good half hour.



We went bowling.



And just spent some time being cousins.

There was also a short trip to the zoo, lunch at Chick-fil-A, more ice cream than should be consumed by small children, and sno cones, of course.  Time with family is a rare treat for us, and we had such a great time.  Clayton remembers his cousins and aunt, but they were just pictures for Eli until this trip.  Now he knows them and is talking about them nonstop.  We really, really appreciate them making the trip out here, and I especially appreciated all the company/babysitting/cooking/cleaning help.  Love you guys.  We miss you already.

VBS 2011

In the middle of all Clayton's health drama, we've had a very busy Vacation Bible School season around here.  I love VBS.  I went almost every summer as an elementary schooler, and I believe in its ministry.  I love that kids who never have the opportunity to attend church show up for VBS.  As we work and work to put on the program, I always try to remember that many of our kids will only have this one week each year to learn about Jesus. 

Our VBS was July 11-14, and this year's theme was Pandamania.  Clayton was able to attend the preschool VBS again this year.  He had the same teacher from last year, and we love her so much.  I wish I had some pictures to share, but trust me, between all the VBS prep, teaching at VBS, and Clayton's issues, a camera was the last thing on my mind. 

I'm so thankful to belong to a church with so many ladies dedicated to making VBS a success.  It's a summer staple, and I'm so grateful to be a part of it.

It's Been a While

With all that's been going on with Clayton, I just haven't felt up to blogging in a while.  We didn't have any firm answers to his leg problems, and I didn't really have anything to say.  The last few weeks have been very busy, but very productive.

Since my last update, Clayton's knee continued to grow more and more swollen and stiff.  He was unable to walk in the mornings.  After a lot of painful warm up, he would walk with a severe limp until he sat for any amount of time.  Then he'd be back to crawling again.  I felt terrible for him, and Ryan and I recently began to notice some changes in his personality as well.  He's been a little depressed.  He began just laying around most of the day, and he didn't seem to enjoy anything anymore. 

On Wednesday, the 6th of July, Clayton was unusually sore and stiff.  After calling and calling and calling, trying to get some help, I finally broke down and took him to the ER.  I didn't know if there was anything done, but at least it would be noted somewhere that I felt he was in enough pain to be seen in the ER.  I took him to Children's, and they were, as usual, extremely helpful.  The attending doctor made some calls, and got our orthopedic surgery appointment moved up and got us in (eventually, it's a long story) with rheumatology. 

On Wednesday, the 13th we met with an orthopedic surgeon who, as we expected, told us he didn't feel Clayton had an orthopedic injury.  He felt that it was more likely a rheumatology issue.

On Monday, the 18th we met with a pediatric rheumatologist at Children's.  She was wonderful and had already been over all our information (what a concept!).  She had actually already consulted Clayton's cardiologist about all the ins and outs of his HLHS and all the dos and don'ts of medications for him.  Even before examining him, she was pretty sure he had developed juvenile rheumatoid arthritis.  After her exam, she diagnosed him with JRA in the right knee, as well as the the left ankle.  Her normal course of action is a 6 to 8 week ibuprofen regimen, but Clayton is unable to take large amounts of ibuprofen due to his heart meds.  She recommended we move on to the next stage of treatment, which was steroid injections in the affected joints.  In children these are usually done under anesthesia, and she recommended we do it as soon as possible. 

On Friday, the 22nd, we took Clayton to Children's for the injections.  Anesthesia, even for quick, small procedures, is complicated for Clayton's anatomy.  They were ready for him though, and we felt pretty confident.  Things went well, and we were home for lunch.  Clayton did really well.  He was a little bit of a wreck coming out of the anesthsia, but he eventually snapped out of it.  When it was time to leave the hospital I helped him take off his hospital pajama pants.  He saw the band aids on his knee and ankle and angrily said, "Hey, who put those there?"  Apparently he hadn't even realized anything had been done to his joints.

Friday afternoon and evening didn't really bring any changes, but Clayton woke up walking with only a barely noticable limp first thing Saturday morning.  His walking has been great ever since.  He does still have a slight limp at times, but I'm wondering if that's more of a muscle atrophy thing than anything related to the joints.  He hasn't complained about pain once since Saturday.  The swelling is still there, but the doctor said that could take weeks or months to resolve.

The steroid injections usually last somewhere between two and six months.  As long as Clayton doesn't develop arthritis in his fingers or toes, and as long as he has five or less joints affected, we can repeat the injections when needed.  They seem like the most compatible treatment with his heart condition at this time, so that's the plan.  Sometimes these things miraculously go away, sometimes they outgrow them as teens, and sometimes they hang around forever, so we'll just have to wait and see.

I'm so relieved.  I was really worried about Clayton, both physically and mentally.  I am still worried about the future, now that he has half and heart and deteriorating joints, but with Clayton, it's just one day at a time, and for now, he's looking good.

Clayton

I can't believe we're still dealing with this, but Clayton's knee is still swollen, and it's causing more and more problems for him.  He has been limping 100% of the time for about three weeks now.  Yesterday we took a day trip to Wichita Falls to see my old roommate, Jennifer.  It's about a two hour drive.  We met her at a restaurant, and when I lifted Clayton out of the van, he collapsed in the parking lot.  He cried and cried and couldn't unbend his leg from the carseat position.  He eventually managed to hobble into the restaurant.  I would have carried him, but I was already carrying Aaron (and the high chair cover, and Aaron's lunch, and Eli's cup, and....).  About half way through the meal he had to use the restroom, and I had to carry him there and back.  Then he managed to hobble to the car afterward.  When we got to Jennifer's house he was able to bend it a little better, and by the time we left, he was walking, with the limp, pretty well.  Unfortunately, it stiffened up again on the drive home, and he was miserable for a couple hours once we arrived home. 

It was so very hot yesterday, and I'm wondering if sitting under the full blast air conditioner in the van for two hours each way irritated it.  He's been stiff in the mornings and after naps, but not to the extent he was after the two hour drive.

I'm starting to get very frustrated by this, and I feel terrible for Clayton.  He usually has a pretty high pain tolerance, so the fact he's been in tears multiple times over this really worries me.  We saw the pediatrician again on Tuesday and are now working on getting an ortho consult.  I really hope they can get us in soon.  Clayton has VBS in two weeks, and I'm not sure if he'll be able to go.  I cannot imagine what is going on.  His second round of bloodwork last week looked better than the first, so it's a mystery.  Also, Clayton can't take Motrin because of drug interactions, so that's just super.  Please say a prayer for my little guy.  It's pretty pathetic to watch your five year old crawl all around the house because his leg won't bend.

Another Update

Clayton's bloodwork looked relatively normal, except his CRP was slightly elevated, indicating some infection.  Because it was only slightly elevated, and he hasn't had anymore fever, we're going to see how the knee does this week and test again on Friday.

Poor boy just limps along like there's nothing wrong.  It doesn't seem to bother him, and he's always been a SLOW walker, so it's not holding him back.  I'm praying it's nothing and that it goes away on his own.

We had a good time at the Legoland Discovery Center in Grapevine this afternoon.  It was packed, completely packed.  I think the kids enjoyed it, but I really recommend avoiding weekends there.  Wow.  That was a lot of kids in a tiny space.

Clayton Update

So it's been an interesting week for Mr. Clayton.  It's a long story.

The last couple months, Ryan and I would agree that Clayton has had a little less energy than is usual for him.  This is not something that has come out of the blue, and we have always known that he would grow more and more in need of a Fontan as time progressed.  We had a cardiology appointment in January, and his heart function and valves all looked good, but now it's been a few months, and I'm beginning to wonder about a few things. 

About a week ago, I noticed Clayton limping.  I didn't think anything of it.  I thought it was just a game or pretending.  I didn't think there had been any injury that would cause a limp.  On Tuesday afternoon I realized he had been limping a lot, and, not wanting to suggest anything, I started watching him more closely.

On Wednesday I took the kids to the splashpad at 11am.  We had been at 9am the week before, and Clayton had complained about being cold the entire time.  The water was cold, and there was a breeze, so I decided to go at a little warmer time of the day, thinking the warmth and the cold water would be a good combination.  When we got there, he was already tired.  He played for a few minutes and then stood around doing nothing for a while.  I asked him what was wrong.  He said he was hungry.  I pulled out the picnic, and he ate nothing.  Then he didn't want to get back in the splashpad.  He sat in the stroller in the shade the 15 or so minutes more we were there.  I did carry him to the splashpad to wet his hair because I was afraid he was overheating.  When we got home, he marched directly to my room, his nap spot, and slept for just over four hours.  When he got up, he refused to come to the table for dinner, so I let him lay on the couch and watch a movie.  It was at this time that I really started to notice his knee, on the limping leg, was swollen.  At about 8pm I realized he was running a fever.  He had Tylenol then and at 3am and woke up chipper and hungry Thursday morning. 

I told you it was a long story.

Clayton was great all morning Thursday, but I was starting to be concerned about his knee, so I made a pediatrician appointment for that afternoon.  I thought he was cured from whatever was bothering him the day before until about 11am, when he suddenly wanted to be held (Clayton????), and fell asleep on my shoulder while I was having lunch at church in a noisy room with about 20 other ladies.  Strange.  Then he was miraculously fine by the time our appointment rolled around, and has been since.

We really have three issues that may or may not be related here.

1) Possible cardiac function issues.
2) Possible virus/infection.
3) Possible knee injury/other joint ailment.

We've started by attempting to have Clayton's August cardio appointment pushed up.  Wish us luck with that one.  We'll see.  We went over to the hospital and got x-rays of the knee.  Those came back with nothing today, so we went back over to the hospital and got bloodwork.

Please say a little prayer for Clayton.  He is usually in such good health, and he still is, he just has a few issues going on right now.  He's been happy and healthy all day today, just still has the limp.  It's my prayer that the knee just heals itself, and he doesn't have any other issues going on.

In the meantime, we're living in denial and planning to meet up with some high school friends tomorrow.  I can't wait.  We're really looking forward to it.  Clayton will be the one in the stroller.

Back at the Splashpad

I love, love, love going to the splashpad.  It's almost like going swimming, but I don't have to worry about anyone drowning, and the big boys can roam free.  There is a good sized, really nice splashpad not too far from our house, but it's always packed, and I think a million kids running on a wet concrete slab isn't the greatest idea.  Last summer we discovered this tiny, but adequate, splashpad, and we only ever had to share it once.  This morning there were a couple other families there, but it was still great.  I hope it remains a hidden gem.  We like having it almost to ourselves.

Last year Eli was not a fan of getting wet.  He would walk round and round the perimeter the entire time we were there.  This year, within about 30 seconds of our arrival, he was right in the middle of things.  He loved it.  We will probably be here a lot this summer.  It's the perfect summer outting for a mom with three little ones.