Where did May go?

We've been busy playing,swimming, working, planting, and growing! We've spent a few weekends at the farm helping my dad to get the garden going. He still can't push, pull, or lift due to his blood clot. Luke helped with some of the tilling, and Landon helped with some of the planting, & I helped drop a few seeds (eggplant seeds are TINY) and the little pods Landon started from home.

There are some green beans, lima beans, squash, zucchini, okra, tomatoes, eggplant,cantaloupe. watermelon, cucumbers, sweet corn,and later will have pumpkins. I also planted a row of sunflowers in the spot my dad always planted them for Amanda and me. Landon bought them for Poppy at Easter, along with some corn and watermelon seeds. Landon started some tomatoes and canteloupe at home. He was so excited to get them into the garden.

Lucy has been enjoying the sunshine as well. We have a teeny tiny baby blow up pool in the front yard that she likes to walk in and out of while Landon runs through the sprinkler. Amanda took them both up the road to the park while Elyssa's school was there for a field trip, and they loved it. Landon loves all the boys in Elyssa's class, and they run around with him like he's their little brother. Her new swimsuit is just a little too big for her, but she will be able to wear it all summer. She is growing growing! One of her 6-9 month pajamas wouldn't fit her last night, and a bubble outfit I put on her today was fitting like a onesie!

Lucy had her final speech evaluation yesterday before her 6 month evaluation, and she has gone up in all of her scores since the last test! She is testing IN HER  AGE RANGE in one category, and in her adjusted age range in the other! She was a level behind the last time. Her speech therapist feels great to dismiss her from First Steps. BUT, we also both know how hard it is to get back into the process of early intervention. 2 years is usually when you can tell much better if there is any delay. And while she is not delayed right now, and is progressing great ( she also said she has never seen a baby as early & as small as Lucy doing as well as she does in EVERY area!!!!), we are going to stay in for 6 more months. We will just do some monitoring until she is 2, in case she starts to fall behind at all.

At this time next week, hopefully I will have everything packed up and ready to go! We were hoping to get a new car by the time we left, but it looks like we might be holding off a few more weeks. Hopefully we will get a rental. The nitro needs NO more miles on it! Luke works on Friday, and then the plan is for him to come home and nap all afternoon/evening until his softball game. Then, we will all sleep a little bit until he and I are ready to go around 4 AM. Thankfully he ususally gets up at 3:30, so he is used to being up at that hour. We'll be heading towards my Grandparent's with a pit stop around breakfast at a Home Depot. Yep, it's Kids' workshop day ;) We'll spend Sunday at church and with the family before we go check into out hotel. Landon is so excited! He gets the maps out everyday and and shows us ''This is where disney is, and this is where we take the train, and it'll take like 10 minutes to get there!"

9 Days!

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Kentucky Oaks

Luke took me to  Churchill Downs today!

Today was the 138th Kentucky Oaks, and we had a great time.

He also took Landon to the pediatrician for a follow up. He is doing great! The doctor said he had group G strep. Obviously, he didn't have strep throat--which I think is group A? I'm not sure how it all works, but that's what he had, and now he's all better! He's just a little sleepy. We are all worn out from the week.

We're ready for HD kids' workshop in the morning, cleaning up the house more, and celebrating the Kentucky Derby!

I think the Disney countdown is already to about 28?!?!

=)

<3

We've got a diagnosis!

By the way, Landon loves Doc Mcstuffins, and the title of this post reminds me of the show. I'm trying to think of a name that would sound like one of her diagnosis. hhhmmmm....

I know most people  ( if anyone even does) who read this, probably are facebook friends as well. So, you might have seen our progression of pictures from Sunday evening until we were discharged Wednesday morning.

This was Sunday evening after we have been at the hospital about 3 hours. He was still swatting hands away if you got anywhere near his knees. He had been seen by 1 doctor, and was awaiting x-rays to check for the septic thing in his knees, and was waiting blood testing.



This was after x-rays 2 times & blood drawn 2 times. His IV was in his right arm, so he had a hard time using his left arm for a few days. The small bumps were changing into a solid raised area all over.




This was Monday evening after his fingers and feet started swelling up. The swelling and bruising in his knees was going away, but he couldn't walk still--now because his feet were still swollen. His joints themselves never had swelling, just all the soft tissue around them. The rash had spread mostly to his inner thighs and back and face.



He had been crying all morning to go home, and was SO excited to finally leave! He was so excited he was running down to the nurses station to tell them BYE. He even jumped up in the elevator, only to fall flat on his bottom. I guess after not walking for 2 a few days, he was a little unstable and weak ;) The elevator was full, and he stood up and said ' I'm Ok!" I laughed and cried all the way to the car.

When we were discharged, we were at the point where they believed it was NOT Systemic onset Juvenile Idiopathic Arthritis ( THANK YOU JESUS!) . All of the doctors together believed that his body was fighting some type of infection or virus ( his white blood counts were back to normal, but the other counters that show he's fighting something were still up, but going back in the right direction), and his body over-reacted for whatever reason.I don't remember all the factors they were testing, but his protein was fine ( no liver damage or swelling), and the count that shows swelling was back to normal also. Whatever it was had set him off to think it had to fight the virus this way. I think that is the correct way to say it. It made perfect sense to me--as much as it can. They had done another throat swab on Tuesday, and taken more blood Wednesday morning. They all said we may never know what it was that set it all off, but at least he is better.

We got a call this morning from one of the doctors and said that the 2nd strep test had come back positive. There is a form of post-strep that has some arthritis side effects. This is what we believe he had. He was on antibiotics for 2 days in the hospital, but they called out another because we want to make sure this (RARE) form of strep is completely out of him.  
Hopefully we will never see this again! He is just a little tired today. Mommy & Landon took a nap from about noon 'till 5:30 PM yesterday! It was much needed. Now, we've just got laundry to catch up on in the midst of the Derby Parade tonight, Oaks Friday, and resting and relaxing!
Thanks for the texts, e-mails, prayers, calls, & cards!

Wednesday morning

Neither Landon's rash or fever returned yesterday after it went away. His nurse just took about 6 tubes of blood at about 5 am, and Landon has been sad and wanting to go home since then. Hopefully the doctors will start coming in at 7 am, and I'll at least hear if they will need to see him tomorrow.

Sunday

This is Landon a few hours before we went to the hospital.

I'm so frustrated that I had typed out a whole post, & saved it, then the iPad turned off and it's all gone :( Landon started having mosquito bite type bumps on his belly & back Sunday morning. By the end of the building 429 concert, he was crying when we touched his knees, limping, and the bumps were now red and all over his arms and belly. We decided to go on over to Kosair, and he developed a fever while waiting to be seen in triage. After about 7 hours of waiting room, x-rays, blood drawn,& seeing 3 doctors, we were admitted. The doctors in the ER weren't too sure what was going on, but were speculating some type of virus that triggered an arthritic type thing or a septic joint something. After about 2 hours of ( interrupted) sleep the orthopedic Dr came to visit. He thought the X-rays were good, and wasn't thinking it was the septic joint option. We then saw the residents, attending doctors, & rheumatology team throughout the day. He spiked a fever again, lost the majority of the rash, started swelling at his hands and feet, and then got the rash on his face and back. I got the impression that the doctors all believed that he had a form of arthritis that is set off by an infection or virus, but still weren't sure what virus he has. By the time he went to bed, he still wasn't able to walk.

We got a pretty good nights sleep, and woke up to the doctors again. I wonder how uncomfortable it is waking people up,and then waiting for the to wake up enough to understand where they are and answer questions? The rheumatologists came in first and discussed with me that they think we are dealing with systemic onset juvenile idiopathic arthritis. The rash and spiking fever are both symptoms and well as joint swelling. He just doesn't have swelling in his actual joints, just in the soft tissue around them. He doesn't have arthritis in any joint yet, but it takes awhile sometimes for that to show. There is no test to determine this, jut testing for anything and everything else to rule out. Since he has other swelling , they wanted to do some urine tests again to see if there is protein leaking. I'm guessing this is similar to pre-e type swelling from proteins. I could be totally off. He can walk today, and his feet don't look like he has pre-e! The rash is still very visible on his face and back, but it hasn't gotten any more raised or done the random fast spreading. Somehow the instructions to not give Tylenol all night got misunderstood. He was given some, which brought the fever down, but doesn't help establish whether the fever would spike and resolve on its own-- a symptom on the arthritis. So, we are on no Tylenol again today and tonight.

Hopefully we will go home tomorrow or Thursday morning. Landon is very excited about going to the parade on Thursday! I don't think there is a window that you can see it from in the hospital :( They did another throat swab earlier and did a finger stick blood draw and took another urine sample. Hopefully some virus will pop up on one of these! If not, I'm not sure what the next step is.

He's done great so far, only cried when he couldn't go home & when he couldn't go to McD this morning. We told him we'd go Sunday evening after we left the ER, and now it's Tuesday :/ He's gotten some great toys and play dough and paint from the hospital that have kept him busy, and we've been watching some redbox movies too.

I cants figure out uploading pictures here from the iPad,but do have some on my Facebook. We will keep updating whenever we know anything! Keep praying for my sweet little boy! We're in room 509 east is you want to join the party ;)