Saturday, October 16, 2010

This is my bestie Melissa, her hubby Brant and their sweet Ginny Girl.  Mel & Brant started having concerns about Ginny's development soon after she was born.  They did therapies, saw every type of doctor imaginable, and ran seemingly every test available for over a year.  Finally in May of this year, at 21 months old, she got a diagnosis.  Peroxisomal Biogenesis Disorder, (PBD).  It is an extremely rare, recessive genetic disorder.  Statistically, the prognosis for PBD is not good.  Melissa attended services for a 4 year old just this week.  HOWEVER, being the certifiable SuperMom that she is, Melissa is determined to make some good come out of all this.  She and one other mom have started the Global Foundation for Peroxisomal Disorders.  GFPD is a 501c3 non-profit that will be an information and support source for families and provide money for much needed research.  They hope to hold their first annual conference next summer so all families can get information from the ONE expert in the country. To support Ginny and GFPD, Melissa is running the Tulsa Run on October 30 and I have committed to running with her.  Neither of us have been runners in the past, so we are both working very hard to RUN the 5K without walking.  I just committed to this on Tuesday so I'm really pushing myself to be ready in time - but no harder than Ginny has to push herself for every tiny step.  In honor of Ginny, other children with PBD, and those who already have their angel wings, please search your heart, pray about it, and consider making a contribution to GFPD.  All donations are tax deductable and can be made by mailing a check to: 

c/o Melissa Gamble
5918 S. Marion Pl.
Tulsa, OK 74135



All of us who love Ginny, or have every loved any child with PDB, thank you - so VERY, VERY much.

Wednesday, August 4, 2010

Wednesday, August 4, 2010

Joseph's day got off to a rough start as his Motrin wore off during the night.  For anout an hour and a half he was in a lot of pain, but once the meds got back in his system all was well again.  We are back to Motrin every 6 hours, around the clock.  He also gets hooked up to the IV every 6 hours for 30 min at a time for his antibiotics.  The rest of the time he is unhooked, thank goodness.  He's in isolation so he has to stay in his room.  It's hard, but they brought a play mat and toys, plus he's starting to like cartoons.  Compared to the last 2 days we've had, today was a breeze.  We are still praying that this antibiotic will work as this is now our biggest concern.  We probably won't know about that for a few days, so please continue to pray. 

Speaking of prayers...I cannot even begin to thank you all for the many prayers and notes of encouragement.  We so appreciate each and every one of you for lifting up our precious baby boy, and for supporting our family the way you have.  We are truly blessed to have you as family and friends.
Here's how we landed in Cook Children's Hospital...

At 2:30 last Wednesday morning Joseph woke up screaming.  When I went to him he acted like his legs hurt.  My first thought was that they were asleep.  I held him, gently exercised his legs, etc. to try to wake them up, but it didn't seem to be helping.  I laid him on his changing table but that didn't help either.  When I raised his legs to change his diaper he screamed out even louder and I could tell that had really hurt. He also refused to bear weight on his legs, pulling them underneath him, when I tried to put him down.  I wasn't sure if that was from pain or just wanting me to hold him.  The only thing I could come up with was maybe he had his legs through the slats in his crib and tried to turn over - that he had pulled something.  I gave him Motrin and held him until he went back to sleep. When he woke up he was walking, but not in his normal gait.  He was happy and didn't really seem to be hurting, so I took him on to school.  I told the teachers what had happened and asked them to call me if he was acting out of the ordinary.  Apparently he wasn't himself that day, but they thought he wasn't feeling well.  They took his temp several times but it was always normal, so they didn't call.  Paul picked him up that afternoon and when they got home Joseph was perfectly happy, but just wanted to be held.  This is VERY not like Joseph.  Again we tried getting him to bear weight on his legs, walk, etc. and he refused.  He would crawl, however, as if it didn't hurt at all.  He wiggled his legs & toes fine, and would dance to the cartoons using only his arms.  He only cried when trying to stand or pull to standing.  I called his pediatrician.  She said to try Motrin again, but that it could be more serious and we might need to take him to the ER.  By 7 or so it still wasn't better, so off to Baylor Grapevine ER we went.  The ER doc said it's common in toddlers to get a cold (which he had) and for it to settle in their hips causing inflammation.  He did hip x-rays, which were clear, and said to keep him on Motrin every 6-8 hours, that it should get better in a few days, and if not to follow up with the pediatrician.  He said there were a few other, more serious things it could be, but wanted to start with that diagnosis and see if it got better.  We told him we had a family trip to San Antonio planned and were going to leave the next day if he thought it was okay.  He said Joseph should be fine on the Motrin and if he started running fever to take him to the nearest children's hospital.  After talking it over we decided since he seemed to be comfortable in the carseat and stroller we would go ahead.  It was also a way to keep him still instead of moving around irritating it so much.  Joseph did fine on the trip as long as we kept the Motrin in him.  He seemed happy and to be having a good time.  However, if the Motrin wore off we could tell he really hurt.  So, Monday morning I called our pediatrician.  We left home at 10:00 for a 10:45 appointment.  By 11 or so she had us en route to Cook Children's in downtown Fort Worth, and said she would be calling the ER doctor there to let him know what was going on.  I dropped Nathan off with my aunt, met up with Paul, and we got to the ER a little after noon.  They got us right in, drew blood (NOT FUN), did a back x-ray, and a hip sonogram.  All clear.  Our ER doc was in a trauma room when our test results were ready.  This meant a long wait for us, but our hearts went out to the child and family in the trauma room.  We left the ER at 8:00 or so that evening with instructions to be back at 7:30 Tuesday AM for a bone scan.  Jump to Tuesday.  We get to the hospital at 7:30 and he gets his IV put in.  They put in the radioactive stuff, then let us go for a couple of hours.  Luckily they do have a really cool playroom here with comfy theater chairs, so we had a good place to wait.  We were scheduled for the scan at 11:30.  Around noon we go back so they can give him his sleepy juice.  We left as he was falling asleep and were told he'd be away from us around an hour.  Two hours later they call us back.  In recovery they take out his IV (this part is important), and start to send us home.  Right before we walk out the door they say they just got a call that the ER doc who ordered the bone scan wants to see us.  So, back to the ER we go.  They start checking him back in, but we don't know why at this point.  The doc comes in to tell us the 5th vertebrae lit up on the scan as the point of the pain.  At that point, the ER doc consulted with the infectious disease doc (who is now our doctor).  They diagnosed it as a long phrase that means bone infection and said they were admitting him.  Then they had to start ANOTHER IV so they could give him  his antibiotics.  They tried the hand not previously punctured, but after digging around  for what seemed like eternity, they ended up putting it in his foot.  This whole IV thing has been very traumatic for all of us.  If the guy hadn't given up on his hand when he did he was going to have a black eye to explain because I was about 2 seconds from decking him. Anyway, they got our room ready just at shift-change time so we couldn't be moved from ER to our room until 7:30.  By the time we got upstairs we were all 3 exhausted and starving.  We finally got food at 9:00, then it took awhile to get Joseph settled down to go to sleep.  It was a bit of a rough night, but we made it and today is better.  The treatment is at least 3 days of IV antibiotics plus at least 6 weeks of oral ones.  The only way to know for sure what kind of bacteria caused it is to do surgery, get some of the infected tissue, and culture it.  Obviously we don't want to do that unless absolutely necessary so we are starting with the antibiotic that treats MOST bone infections.  Our doctor said this one gets rid of probably 98% of the bone/joint infections she treats.  She has also consulted with an orthopedic specialist who will come by to see Joseph later today, so we'll be getting an opinion from him as well.  We are in isolation because it's an infection, so we're stuck in our room, but the Child Life Specialist brought a play mat and toys.  We are better now.

We are so very grateful to all of you who have been praying for our sweet baby boy.  This has definitely been one of the most difficult things we've ever been through and we couldn't have made it this far without the love and support of our family and friends.  We have been comforted by the knowledge that so many have been praying for our little guy, and that God is healing him.  I won't say I'm not still scared however - I am.  Waching your child go through something like this is awful - especially when you don't know what is causing all their pain.

Please continue to pray that this course of action works and that no more tests or procedures are necessary.  Please pray for God to give Joseph comfort, and for Him to give us peace.  Also, please don't forget Nathan in all this.  He is staying with Aunt Nelda, so I know he is safe and happy, but I also know it can't be easy being away from your entire family for almost a week.  Thank you all so very much.

Saturday, January 30, 2010

The Perot Family
December 2009

As always, December was full of excitement.
We traveled to Tulsa to celebrate FOUR family birthdays...Nathan turned 5, Jared-our nephew-turned 7, Alesa our neice celebrated her super-sweet 16, and Paul turned............never mind...

It was a fun-filled trip and we so enjoyed spending time with everyone there!

Nathan's birthday happened to also be "pajama day" at school and his school friends helped him celebrate his big day.

After school he was surprised to find a new wagon that Nonnie and Poppa got him!
 He REALLY likes it!
He also got to open all of his gifts from Mommy & Daddy, Joseph, and Aunt Nelda.  Here's his favorite...
Yes, it's a real BB gun.  Apparently it's a right of passage for a 5 year old to get his first gun.  No worries stays locked in the safe with Daddy's and only comes out with strict adult supervision. 

We woke up at our house on Christmas morning to see what Santa had brought.  Papa Gene & Mimi were with us, too.

The next day we traveled to Stigler to have Christmas with Nonnie & Poppa and Uncle Cameron & Aunt Ryan.  While we were there we also got to see Mammaw & some of our aunts and cousins.  It was GREAT!!

These are just a few more random pics...


D-O-U-B-L-E    T-R-O-U-B-L-E

Nathan and I made YUMMY Chocolate Chip Cookies and we had SO much fun doing it!  And yes, we ate more cookie dough than we baked.  Isn't that what you're supposed to do???   :)