Jason, Rachel, Chase, Malayna, Kaylie, and Evan

Tuesday, August 12, 2014

First Day of School 2014

 I can't believe summer is over and today was the first day of school already!  It starts earlier and earlier every year!
 Chase--4th grade
 Kaylie--2nd grade
 Malayna--2nd grade
Evan--preschool.  Evan LOVED preschool.  He didn't cry at all when I dropped him off, and when I went to pick him up he was all smiles and having a blast playing!  

Wednesday, August 6, 2014

Coming to the end of summer already!!!

Yikes!  Hard to believe that summer is almost over already, and I have been really bad about updating the blog this year!  So Chase had his follow up appointment with his CF dr in July and they went ahead and took out his picc iv line (thank goodness!).  His pfts were better than when he was in the hospital and he has started gaining some weight back, but his dr would still like to see some improvement on the pfts.  They will also repeat his chest xray when he goes back next week and they are hoping to see everything cleared up, including those nodes.
 
In the meantime, we have been trying to get back to summer....playing, swimming, just having some fun before school starts next week.  The Ozark Empire Fair was last week, so we went to that again.  The kids loved the rides even more this year, and I rode most of them this year too, so I didn't get very many pictures.
 Chase on the swings.
 Kaylie
 Malayna
 Evan and Daddy
 This was Chase, Malayna, and Kaylie's favorite ride this year...and luckily they were all tall enough to ride without an adult because this would make me sick!!! Ha!  They rode it 3 times in a row!
 Evan wasn't tall enough for this one, but the other 3 were!
 Evan rode some cars instead. 
 And here are my monkeys at the park...just hanging out!  Malayna
 Kaylie
 Chase (he was having a hard time holding himself up...need to work on those arm muscles!)
Evan was too short to hang upside down.

Wednesday, July 16, 2014

Botanical Garden

 We're trying to get out of the house so we don't go stir crazy, but it's hard to find activities that everyone can do since Chase can't get his picc line wet, or do anything that might bump it, etc.  We walked around the Botanical Gardens the other day, and that was fun!
 Can you find Evan in the mass of flowers?!
I tried several times to get a nice picture where everyone was smiling, but we were just having one of "those" days where everyone was silly.....so this is what I ended up with!  

Happy 4th of July!!!!

 We were so glad to have Chase discharged from the hospital on the 4th.  We made it to Grammie and Papa's house just in time for dinner and fireworks!
 Mmmmm, smores.
 Nice and gooey!
 Malayna and Kaylie are such nuts!  They were being silly on Papa's four wheeler.
 Snacks and fireworks...the perfect way to relax and enjoy the evening!
 Papa helped Evan roast his hotdog over the fire.
 Yay for fireworks!  Jason put on a good show this year!
 

Thursday, July 10, 2014

Update on Chase

So on June 22 Chase came down with a high fever and cough.  We were on our way back from Gulf Shores, AL so it was a miserable 13 hour drive.  On June 23 I talked to his CF dr and she started him on an antibiotic.  He continued to run high fevers, in the 104-105 range which were very scary.  I took him to the local dr here and they ran some tests and found out he had pneumonia.  After talking with his CF dr again, they added some more medications and told us we could continue to treat him at home, but if anything changed or he got worse they would want him admitted to St. Louis Children's Hospital.  He continued with fevers throughout the week, but they were staying in the 101-102 range.  On June 28 he woke up vomiting, fever back to 104.4, and looked awful.  So we threw some clothes in a suitcase and headed to St. Louis where he was admitted to the hospital and started on iv antibiotics.  They couldn't get a clear pic on the xray, so they ordered a CT scan.  The CT scan showed 2 nodes in his lungs that were constricting his airways and making hard for him to clear the pneumonia out.  The drs weren't sure what the nodes were since it's not a common CF occurrence.  They wanted to do a bronchoscopy to get better cultures of the spots, but also wanted to do a biopsy because there was a concern that he could have lymphoma.  So he had surgery on July 3 to culture and biopsy the nodes, and to place a picc iv line that would be more stable than the peripheral ivs.  They released him from the hospital on July 4 and we came home with an iv and iv antibiotics and home health care nurses to come help.  I have been administering iv antibiotics at home to him every 6 hrs since coming home.  Of course, we got little to no sleep because we were worried about him having lymphoma.  Luckily, the dr called yesterday and said the biopsy was negative, so he does not have lymphoma.  We were SOOOOO relieved.  He still has pneumonia though and they are now thinking the masses in his lungs are just swollen lymph nodes from being infected.  We are continuing on iv meds, and he has a appt in St. Louis on July 17 to have another xray and see how he is doing.  The drs will continue to monitor the spots in his lungs to be sure they shrink with the infection clearing up.  It's been one heck of a summer so far, and I feel so bad for him because he can't do anything fun, and therefore I can't take the other kids to do anything fun either like the park or swimming, etc.  He can't get the iv line wet, and he can't do anything that might bump it, so it's been a long indoor summer.  I think we all need a redo of summer this year!  We're hoping to get him better soon and have the iv pulled at some point while it's still warm out so maybe he can get a day or two of fun before school starts back up. 
 He was pretty wiped out the first few days in the hospital.
 Child Life came by and helped him get out of his room for a bit by taking him to the garden on the 8th floor and letting him kick a soccer ball around for a bit.
 He also got to sit in the window and look out at Forest Park (the mask had to be worn anytime he left the room).
They have hospital bingo on Wednesdays, where the kids turn the tv on and they call out the things there and if they win they get to call in and pick a prize shown on tv.  Chase won the first game of bingo and chose this hunting set because he said, "My PaPa will love it!"  Too cute! 

Vacation 2014 and Girls turn 7 years old!!!!

 Since we were leaving for vacation on June 18, we let the girls open their bday gifts on the 17th so we didn't have to pack them all along.  They were so excited with everything they received!
 One of their favorite gifts was the horses they've been wanting for a while now.  They love to play horses in their room.
 On June 18 we got up at 4am and headed out for the 13 hour drive to Gulf Shores, AL.  We passed the USS Alabama on the way there, and Chase thought it was so cool I had to take a pic of it.
 We finally arrived at the beach that evening after a long day of driving, and the kids were so excited about their first time seeing the ocean!  This is the view from our room, we were on the 12th floor. 
 Sunset....too pretty!
 First time putting their feet in the ocean and wiggling toes in the sand!  They couldn't wait to get up the next day and go swimming!
 This is the condo we stayed in....it was really nice!
 Perfect sleeping arrangements....we gave the kids the master bedroom with the king size bed.  Chase ended up making a bed on the floor after the first night though because he said Evan kicked too much in his sleep!
 Yay, ocean!!!!
 Malayna wanted to build a sandcastle with a moat, so we gave it our best shot!
 And it was Malayna and Kaylie's 7th birthday!!!!  Happy birthday girls!  I can't believe they are 7 already, they are growing up way too fast. 
 Chase waiting for a wave.
 We had cupcakes for snack and sang happy birthday!
 And as a special bday treat we went out for dinner on the ocean and ice cream afterwards. 
 That night we let them stay up late and took flashlights out to the beach to look for crabs, ocean life....just explore in the dark.  It was really neat to walk up and down the beach with only the flashlights!
 Yep, see, I was there too....this might be the only picture of me! Ha!
 Watching the waves crash with flashlights to see what they could find.
 The girls liked to explore the little tide pools to find shells. 
 The next day we just hung out on the beach again.  Evan liked to dig holes and step in them, they bury his legs.  What a nut!
 We took a dolphin cruise on Friday too.  It was hot, but really neat!
 We saw lots of dolphins. 
 The kids were so excited to watch for the dolphins! 
 Kaylie pointing out the dolphins coming.
 The also let them "fish" with little nets on the boat and catch fish...it kept them occupied while we were making the trip back to the dock!
Footprints in the sand...wish we were back at the beach!!!