Easter!

Just a quick post – I love both these pics captured by a neighbor – we had an Easter egg hunt at our house, and G stood up for a group picture (and so straight!), AND he captured G with his newest accomplishment – crawling on all fours, up on his hands! Usually, he is on his forearms, but every now and then he will get up on his hands, which is what we want!

G easter egg hunt 2016_2

G easter egg hunt 2016

He wasn’t so interested in the eggs, but had fun crawling all over the yard and having all the kids around. You also can see him donning his (not so) fashionable¬†Carhartt overalls, the only thing we have found that doesn’t rip with all his crawling. All of his jeans have holes in them, so at this point, anytime he goes outside we put these on him and it saves a bit on our clothing budget ūüėČ

Hope everyone had a super Easter!

 

Home Sweet Home

We are happy to report G is home from the hospital and normal life can resume! We were blessed to have family in town helping us manage the day to day and G loved having a little extra attention!

We were blessed with prayers from across the country and we saw God’s hand throu2016-03-22 12.36.38ghout. Firstly, the poor guy wasn’t scheduled for surgery until 1. Anyone who knows G knows he LOVES to eat, and the fact his last meal would be dinner the night before, we were preparing for a nuclear meltdown. However, G was happy as could be all day, and not eating didn’t seem to phase him.¬†One of our dearest friends from church works at the children’s hospital, and she was with us as G got prepped, and in addition to adding her knowledge through the process, she provided a great distraction for mama’s nerves ūüôā The nurse came to take G¬†back and he was as happy as could be and glad to go with her, another shocking occurrence! ¬†(poor guy didn’t know what was coming!) G’s procedure entailed drilling a hole in his skull about the size of a pencil tip, inserting a wire, and securing it to his head. The wire is then connected to an Intercranial Pressure (ICP) monitor which he is hooked up to for the duration of the stay.¬†We were told it would be a 30 minute procedure, and after 45 minutes, mama C was about to lose it. They finally called us back after an hour, at which time we spoke with the neurosurgeon and he confirmed everything went well. We then went back to see G coming out o2016-03-23 07.46.17f anesthesia. Oh boy, he was sure grumpy. Similar to last time, he had a hard time breathing and the nurse became concerned when his lips were turning blue. They hooked him up to oxygen, which he hated, but helped. We gave him two doses of morphine to calm him down so he could breathe, and that finally helped and he fell asleep and got his lungs going again. This was¬†a huge relief to get through the anesthesia and know he was okay.

We then went up to his room and were thankful for a great view of a park and trees – it’s the small things ūüôā Knowing G must be hungry and getting the okay, we got 2016-03-22 16.03.28him through a bottle of milk, apple sauce, and some veggie sticks before it all came back up again :/ Not fun in a hospital bed! After some anti-nausea medicine the next day, ¬†he was back at it.

Our time was spent mostly in bed hooked up to the ICP monitor, but spent a bit of time taking a walk and in the playroom. G loved roaming the playroom, where we followed him with the ICP monitor and had to record the numbers at any point it was over 25 for 5 minutes (which never happened). Most anytime I looked at it (the docs advise us not to pay attention to it other than when we are out and about!), it ranged from 1-20. G appreciated having lots of tv since we don’t watch too much at home, and his choice of iPad games without competition from Sister C! ¬†We learned it is darn near impossible to sleep in that place! Someone was coming in pretty much every hour, and prodding him every 2. ¬†I don’t know how sick kids can ever get well with no sleep! ¬†Daddy P and I took turns sleeping at home so we could feel like real people at least for a day ūüôā2016-03-22 19.19.19

This morning the monitor stopped working all of a sudden! I honestly thing G dislodged it in his brain due to all his tossing and turning, as they couldn’t find anything wrong with the machine. G was pretty sick of being there (especially in that bed), and kept signing and saying “all done, all done”. I am fairly certain he took matters into his own hands to get out of there! It was pretty hilarious. They were planning on letting us go today anyway, so not much harm done I suppose!

Yesterday we were told the numbers looked great and we would likely not need to come back to the craniofacial clinic ever again. That sounded pretty darn awesome. Unfortunately, we learned that last night his pressure spiked 8 times, and we now need to meet with the whole team again to determine next steps :/ We are pretty bummed about the outcome at this point, but look forward to learning more from the experts in a few weeks. We trust God’s hand in all of this and are so incredibly thankful for all of the thoughts and prayers we have received over the past few days!

 

Absolute Magic!

MK_MSATHCLB_7617431717EPCOT_BACKSIDE3_7618372629

Last week, our family took a break from the recent drama and headed to Disneyworld! None of us had been before, and it exceeded our expectations in every way! Daddy P and¬†I aren’t keen on crowds and dreaded the whole experience, but wanted to get it done before Sister¬†C¬†hit¬†kindergarten and confined us to traveling at peak times! We surprised them at breakfast the day we¬†left,¬†which was a pretty great start to the day!

Here is a short video with some highlights of the trip, thanks to Google.

From the minute we arrived, we were blown away by the exceptional kindness we experienced with every turn. This trip was the first¬†experience¬†taking G’s wheelchair stroller on a bus, and passengers and staff both made us feel comfortable with the process.(It also meant we were first on the bus which was nice!) So many times we met strangers while in line that were so kind and welcoming – a woman I will probably never forget blatantly asked what was wrong with G (which always takes us a bit aback!) and then followed to say her family fostered a boy with cerebral palsy for 10 years and she just has a huge heart for kids with special needs…and apologized for her upfrontness but she loves meeting kids like ours. We rode the train with¬†a dad visiting Magic Kingdom with his 20 something son with Downs Syndrome and they were just so incredibly nice and inspiring.

EPCOT_WRLDSHOW_7618129913Every character we met (Elsa, Anna, Jasmine, Cinderella, Snow White,Tinkerbell, Aurora, Donald Duck, Mickey Mouse, Doc McStuffins, Jake, Sofia, Daisy Duck, Minnie Mouse, Goofy, Pluto…and I probably missed a few!) talked to¬†G without hesitation, even though he was often turned the other way (shy!) and generally not responding. He DID give Elsa a huge smile, and kept trying to give Anna a Mickey sticker which was pretty cute. He was SO excited to see Doc McStuffins, but the minute she would come by he would turn away…it was really cute how excited he was to meet everyone, I only wish they saw it too!

There were so many¬†times Mama C cried watching the pure joy from the two kiddos, but some of the highlights were…

1) realizing we would never wait in a line and would always be front row for shows2016-02-28 17.34.53

2) In a Frozen sing along, Elsa waved directly at Graham from the stage, out of a crowd of hundreds!

3) Watching just HOW incredibly excited G was watching PhilharMagic, one of the shows in Magic Kingdom

4) MK_PFTHBLUEA1CHAR_7617526022¬†Elsa giving G a kiss in our meet and greet, and carrying on a “conversation” with him2016-02-28 21.13.02

5) Sleeping Beauty inviting G and C to watch the fireworks with her across the room at Cinderella’s castle (where we were dining, naturally). I explained that was sweet, but G can’t walk, and she said no problem, I would love to carry him. I was so touched but also know his floppiness can be hard to handle, so I went over with them. Big Sis sat in Aurora’s lap ¬†and G sat next to her watching the fireworks. It was an incredible experience.

6) G was invited to be in a the finale of the Lion King show at Animal Kingdom. I told them again that he can’t walk, but thank you, and they said, no, we will push him in his stroller if that’s okay. So off he went with an¬†elephant¬†(?) and Big Sis to dance around in the ending parade.

7) How sweet Doc McStuffins was to keep coming back and trying to love on G even though he was so shy every time. This video is of Sofia, so take this reaction and double it for Doc!

STUDIO_HBKEYSTO_7619157426The trip was so touching, we were amazed.  Needless to say, I think Daddy P and Mama C might be suckered into going again sometime. Not for 6 days and not every park (!), but it was a fabulous time for everyone.

Now that the fun is over, G’s ICP (intercranial pressue) monitoring is scheduled for March 22. Today we discussed the surgery (drilling a hole in his skull, inserting a wire, and to keep it “secure”, pushing it out through his skin in the back of his head) and 3-4 day inpatient stay. We check in on Tuesday and will check out Thursday or Friday depending on how things are going. Apparently then we wait 2 weeks to have a follow up with the surgery team to discuss the results. So much waiting, so much trusting, so much loving on that little man. He is one tough dude, and God knows he is making all of us stronger too!!