Arizona

Today we are in AZ - suppose to be 109 today!
Why are we here? Long story!
Here is the short version:
About a month ago I found out that my Dad had liver cancer - then a blood test came back that said it was inconclusive of Cancer - then the drs decided that they had enough info to say it WAS cancer. So, last I heard, he has 6 months to live :(

Because Gryphyn was born in Germany (and some other family drama) plus, we have only been back in the states a few years, my dad has never met my boys and its been years since I've seen him either. So the boys and I flew out yesterday to see the family - (all my immediate family -besides us are in AZ)

Flying for 9 hrs alone with a 3 year old and 1 year old wasn't ideal but my brother in law Josh was able to get us tickets for $70 round trip so the price was right.
We left NC at 8am our time, flew to Detroit MI, changed planes and flew to Huston, TX, then switched planes again and made it to Phoenix, AZ at 6pm our time- It made for a very LONG day. The first two flight went smoothly - we even ALL slept the whole 2nd flight,but the last one sucked!
The boys were done with sitting still on the airplane, the flight attendants weren't very helpful, and the ride was bumpy! Several minutes after we were in the air, Grph took off his seatbelt and laid down on the floor. A flight attendant walked by looked at him and went to the front of the cabin and made an announcement that "we have not reached our cruising altitude and the pilot has not turned off the fasten your seatbelt sign yet - please remain seated with your seatbelt on until he has done so" I knew they were talking to us - "roll eyes"! Apparently she doesn't have small children! So my attempts to get Gryph back in his seat with a seatbelt on resulted in a spanking and lots of screaming - Sigh!
Later when they were passing out drinks, I asked for juice in a sippy cup, but instead got a look and a cup of water and a can of juice. Mind you Vahn is on my lap and so I attempt to keep him from grabbing the cans from the cart while I pour everything into Gryphyns cup. Big surprise, Vahn picks up the can of juice to take a drink and spills it all over him self and me! Good thing I packed him a change of clothes in my carry on! Not so forunate in my own wardrobe choice - by the end of the day, my pants for sure were an indication that I was a mom with small kids! Gryphyn took 3 trips to the bathroom - at least he went in the potty. Anyone who has ever used the bathroom on an airplane knows its not made for a mom and 2 small kids - what an ordeal that was!
When I told Zac, he commented, "How many good flights did you really expect? You are traveling with the Men :)" I guess thats true. We survived and everyone is playing relatively nicely in my sisters living room as I type this.

As for my dad, I am going to call in a bit to find out the latest but last I heard, this was the status:

~He has psoriasis
~A large mass on the left side of his liver and 2 small ones on the right side
I asked him about the blood test that said the cancer was inconclusive and he said they had enough other information that they were NOT going to do another liver biopsy

~He can't get an appt with the Oncologist until the 4th of Aug - not sure if that will just be a consult or treatment
~ His legs and stomach are about 3x their normal size from all the fluid retention. He has to go in again and have space between his stomach and intestines drained - so he can breath better. Last time, they removed a liter of fluid. And it help tremendously.

~He can also only eat a few bites of food at a time because of the pressure on his stomach and lungs (can't get too full)
~ His dr and pharmacy aren't communicating well so he is having trouble getting his meds refilled. He only has a few days of blood thinners left (for the blood clot in his lungs) and he has been out of another med for 3 days now that removes the build up of ammonia - that is out put by his liver not functioning. So ammonia is building up in his body.

For those of you checking in on Vahn's status, he is doing much better - more pix to come soon - his right foot is starting to peel and his left is almost completely call new skin. I still have to put the medicine and bandage on it but he walks around like it is fine now!

Stay tuned - more updates to come!

Day 10

Day 9 picture

A few of my online friends mentioned that they heard about our story on the view this morning.

The suspense of what was said on the view was killing me so I did a little online research and came up with this link:
http://abc.go.com/daytime/theview/video

click on the video link pictures at the bottom titled
- Hot Topics 7/25: Kid Tips
Whoopi warns parents about playgrounds in the heat.

We aren't specifically mentioned - they say "we all saw the pictures of the kids feet in the paper"

Great now I have to search the papers too - LOL

I never did come up with anything about us in the newspapers just a story about some kids in NY who were burned last year - they were doing a follow up story this year. You can check out that link at:

http://www.wnbc.com/news/16935979/detail.html

One Week

Today is 1 week from the day Vahn walked out on the black top and burned his little feet. This morning, he took a few steps and by the end of the day he was walking around again. I am so excited - it is the most awesome thing to see him walking again after all he as been thru this past week.

Here is a short video of Vahn playing with Daddy



And of course the newest picture of his left foot - taken tonight:

Day 7 - update and picture

Update later - but here is the latest pix from tonight:



Update 1 week after
- we went to the specialist this morning and things are looking good! Yea for good news!
We got a different type of wrap - the kind they use when you have blood drawn - so that he can't pull it off. And they said that I could stop giving him the tylenol and motrin unless he seemed to be in pain.
This morning when he woke up he was standing up in his crib and later today he even took a few steps on it.
I'm so excited that he is healing so quickly and will make a complete recovery!

Day 6

Thankfully - I finally have NO new news to report!
Vahn is doing great - Still doesn't like you to "mess" with is foot - but it is healing and starting to look better (if you can say that at this point)
He has also become more independent and figured out how to get around and climb again - so he is back to his old trouble making ways. :) Such as pulling his bandages off - HONESTLY! I asked the dr today if there was anything I could do about that and she said - "he's 14m - not a whole lot you can do but watch him and try to keep him from grabbing them" Right who wants to take shifts with me??

Here are a few pix of him playing with Gryphyn eariler today. As you can see, he can stand on his right foot but he holds the left one back out of the way - he uses the top of his left foot and his left knee to stand up and crawl up and down from things





Here is the picture from tonight - when we changed the bandage. You can see that the blister on his heal is getting smaller and there is more new skin forming around the outside edge of the large blister area.

Day 5 - update

This morning, I received a call that the Wound Care Specialist wanted to see Vahn at 9:40 am - that gave me about an hour to get everyone ready and out the door. Zac had stayed up all night working on pictures for a client and was going to stay home with Vahn while I took Gryphyn to the lake for some Mommy and Gryphyn time - he has been sort of left out since Vahn requires some extra attention right now. So, Gryph ended up staying home with Daddy (despite his mere 3 hours of sleep) and Vahn and I headed to the appt.
We had to wait forever - I was about to ask someone if we were ever going to be seen when they finally called us back (an hour and 15min after we arrived) The nurse and dr that we saw were so amazing though that the long wait was forgiven! - It was by far, the best dr experience I have ever had. I'm not a big dr fan anyway. The were very focused on us - talked and played with Vahn and answered all of my questions with out making us feel rushed.

While we were there, they trimmed a bit more off his large blister and cut open the one on his heal (which had gotten bigger since yesterday) They also said to try and keep the sulfide cream off of his toes. They were getting too wet and that could cause them to breakdown staying wet all the time. They also pointed out where the new skin was growing around the inside edges of the big blister and said that the one on his heal may get bigger or dissolve - they weren't quite sure. Vahn did so well with all the "messing" with his feet - the dr even commented that he was braver that most of the big people that they see! He goes back to see them on Friday. (Tomorrow is the follow up with dr at our family clinic.)

Later this afternoon, Zac was making plans to meet the family who he stayed up all night doing pictures for. They both happen to be employed by our local news channel 13 and when the topic of Vahn's feet came up they asked if we would come in and do a story for the news. They were already working on a story about the heat we have been experiencing lately. I was a bit hesitant, I still feel like a bad mom for letting this happen - but agreed to do the story. Joking they should put be behind one of those back curtains so you can't see my face :)
I had printed out the progression pictures for the drs and had those with me so they copied those as well and interviewed our family. We thanked them and headed to a local lake to let the men play - as we were getting ready to leave the lake, the camera man showed up (we had mentioned thats where we were headed when we left the station) He wanted to get some more video footage of the men to expand the story for the 10 o'clock news. Later when we got home and were changing Vahns bandages we took more photos and emailed those to the station as well. The video is suppose to be available on their website wlos.com. It is titled Dangerously Hot. So far we have been unable to get it to play though. I think it may be because they are running the story again this hour. I'm anxious to see how it turned out.

11pm update - Video added now along with a new one titled "Baby's feet burned" - that video wasn't up quite yet though

Here are the photos that we sent them:

UPDATE from todays dr visit!

This afternoon we had a follow up at the dr's office. They were very concerned about the size of his blister - 2 other drs came in to see it -and I over heard staff in the halls asking if they had seen the burned feet.
Why can't we ever be famous for good reasons? ? ? ?

Once the dr we were seeing came in, she said that we needed to pop the blister. She said something about it being a _____ for infection. (I missed what she said) Thankfully, Vahn fell asleep waiting for her so he snored though the whole procedure. He did kick and squirm a few times but never woke up. She cut the big blister off and drained it (ewww). Underneath was another blister looking thing - it was this gelly like material though - she took that off as well and underneath that is all raw and gross looking - makes me want to throw up looking at it :(

- I just changed the bandages and put him down for the night - As horrible as it looks still - I have to admit that it looks much better than it did right after the procedure - I wish I would have taken a pix then.

Vahn has another follow up appt on Wed morning. They are also suppose to be calling me to set up a consult with a wound specialist - so thats the latest - Here is a picture of his left foot I took when I changed the bandages tonight - I want to trim it more but I don't have anything sterile to do it with. The dr even left to get sharper scissors when she was working on it???

Update

Today was much better for Vahn (and me) - I was totally expecting him to be fussy and clingy again all day - but he actually gave into the crawling thing and was able to get around and play. His Right foot is much better - he is acting like it is fine - kicking it and standing up on it - the left one is much worse and he can't put any pressure on it. We go back to the dr again in the morning - I am curious if they will drain the blister or just let it pop on its own - it just seems so BIG and I wonder if it would be better with out all the pressure of the blister on it???

Here are a few pictures from last night - (they look about the same today)!



Here is also a short video of him playing at the park tonight -it isn't that great since I took it with my phone but you can see that he is feeling much better - playing and acting more like my crazy little man!

Man Feet

I feel like the worst mom in the world!
Yesterday, I went outside to check the mail. I didn't want to carry Vahn all the way down to the street so I sat him in the grass to play. By the time I got to the mail box, he was screaming in pain. I ran back up the drive way to see him "dancing" on the hot black top barefoot. I scooped him up and put his feet in cool water - for over an hour I kept him there every time I tried to take him out he would scream. - Poor little guy - we called the dr and they wanted to see him so we took him in and found out that he has 2nd degree burns on both of his feet! I feel so bad for him - I know how much burns can hurt. They gave me a cream to put on them and said to keep them wrapped up and socks on and to alternate tylenol and motrin all weekend - they want to see him back on Monday.

I feel so bad! I know its not really my fault - I put him where he was safe - I just wish I could take his pain away!

Here are some pictures Zac took after we saw the dr

Gryphyns Happy Day Party

On the 12th of July we finally had Gryphyn's birthday party. His actual b-day was on Tuesday the 8th but with 4th of July plans and people traveling, we decided to wait until the following weekend. However, I was disappointed to find out that a lot of people were still out of town the following weekend :( We only had 4 kids show up to the party! I think the party went well though despite the small number. We went to East Asheville Park and let the kids play for about 30 min - then walked up the street to the Fire and Rescue Station #8. The Firemen were so nice and let the kids checkout the trucks despite them all being shy at first. Then one of the men pulled out all his gear and put it all on explaining what each piece was and how it protected him. Afterward, we headed back to the park and had cake and opened presents. We literally took hundreds of pictures. Here are a few of my favorites - you can check out some of the others at:

http://s223.photobucket.com/albums/dd44/mailjam/G-%20happy%20day/?albumview=slideshow

Happy Birthday Gryphyn!

Today my baby turns 3!  As a gift to me - I am getting a blog - so much happens so fast and I need somewhere easy to post and share lifes little moments.  So here is how I see things - thru my mommy eyes!