Sunday, June 27, 2010

Nothing Goes Smoothly

Last night the kids and I went to WIR to watch Dan race. There was a big show with jet cars and Fireworks at the end. We took our neighbors with us too, we all had a great time! Danny was a trooper and had a great time, not to mention he was a popular attraction with the girls, as always LOL
Danny helping Mom out stage the car for Dad :) He's sooooo cool!
Dan's first burn out
Dan's second n last of the night burn out. Unfortunately he broke out (went faster then he said the car was going to go) by .007 of a second. It was so close, but hey it was a good race :)

Danny watching his newest Girl ~ Jill
His first Jet car experience! He did pretty good, he only "spooked" when the car went by....as I'm sure he felt it pass. I had ear plug and ear muffs on so the noise didn't bother him at all :)

Jill ~ "The Queen of Diamonds" ~ her jet car did 299 mph

Danny sporting his autographed pic of "The Queen of Diamonds"
Avrianna has been excited for many years to drive a Jr Dragster (mom's still not on board for this yet). So to see a local dragster driver that is a girl (not to mention the Jet drag driver was a woman too) Avrianna was stoked! Here she is with the neighbor girls and Nikki Londerville
Now this didn't help matters either ~ LOL. Thanks Nikki!

Dan's Cheer leading squad in the stands, heehee

Danny got his newest walking sling ~ I LOVE IT! Looks like he is going to go parachuting. I'm READY!

I can sit him up tall

Standing.........Really Mom, do I have to? I can't believe how tall he it.

OK Mom, are we done yet?
Must be genetic.....the attitude. Not sure where my kids get that, LOL

As of today the surgery is still schedule for July 13th at 10:15am down at Children's Hospital, and we are going to have a PICC line put in here at the local hospital the day before. Hoping to resolve any hiccups that day of surgery. BUT if the labs Dr K took on Friday come out funny then the deal is off. Leave it to MY SON to throw and curve ball at us in the last inning. He has been developing Petechiae in multiple areas of his body. Mostly where he has pressure contact but none the less something not normal with Danny. We need to rule out the serious reasons for him to get it. Right now the only flag if you would call it a flag is his platelets are alil low (not terribly low, but low). We are awaiting his PT & PTT results which will show Danny's clotting ability, if that is off then I'm sure EVERYTHING is off. We should hear from Dr K with the results tomorrow. I will keep you all posted
Dr K. ~ Love this picture of Dr. K pondering on Lil Man..... Hmmmmm, Danny!

He has veins, right?
Dr. Kasper hanging out with his Biggest fan ~ trouble is with DOUBLE trouble, I'll let you guys figure out who is who, LOL

I was on a mission the other day..... A FB friend was inquiring about a few of the things in a picture that she saw that Danny uses. So on here and on FB I updated Danny's equipment. That was so much fun and it was way over due. I didn't think it was going to spark such an interest with my SN families. I'm so glad I was able to help out and spark some ideas with them. I LOVE it when I can do some good and help out.
Today we were suppose to get our family pictures retaken. Key word here is "suppose to"! Avrianna woke up on the wrong side of the bed today and EVERYTHING wasn't right with her, the hair, the make-up, the earring, the outfit, etc...which then put her in a tail spin of hysterical crying. So much for pictures! I cancelled as I didn't want to waste the photographers time coming over to the house and have Avrianna look like hell from crying so much. It was suppose to rain and be crappy, BUT of course the sun was out the whole time our pictures were scheduled for. I could just cry, I'm so disappointed as I really wanted FAMILY pics done. Now I can just hope that we can coordinate something before the surgery. UGH!!!! My head feels as if it's going to explode this afternoon.........hmmm, can't figure out why? LOL! Maybe I should have just stuck with dogs, heehee. It's just the way things roll around here, NOT SMOOTHLY
On too dogs ~ Bailey has been cone free for just over 24 hours. Yippee!!!! I think we're all excited about that. She hasn't touched her legs since I took the cone off, I guess she got the hint!

Tuesday, June 22, 2010

BACK on!

Look at this SMILE! Danny is doing so well and he has been in such a good mood.....I'm LOVING IT! (knock on wood)


Lately every time I take Danny outside a bee thinks it won the lottery with Danny's flower on the wheelchair. REALLY, and they are suppose to be smart?

I got confirmation yesterday Danny is having the VEPTR2 back surgery on July 13th around 10:15am. This surgery is "suppose" to be less traumatic on Danny and still have good benefits. This one has significant differences from the first surgery we almost did.....time of surgery is around 2 hours vs 8 and Danny's blood loss is alot less during surgery. We are still working diligently with the powers that be at CHOW to get all the loose ends together, but I think we are headed in the right direction. I'm excited and freaking all at the same time. I am very glad the surgery was able to be done before the beginning of school for next year. So the brunt of the recovery for Danny should be over with once we start his therapies back up. I'm freaking out, as most of you all know it's been one thing after the other once we step in that hospital, sigh......BUT I'm hoping for a better experience this time. Please cross your fingers!! I really want this to go well, not for just the obvious reasons, but we've worked so very hard to find a GREAT team of doctors to follow Danny and I just don't want to have to go through finding new ones, as if I can't feel that it's a "safe" place for my kids when it comes to the quality of care I will have to look else where. I will NOT settle for second best when it comes to the health and well being of my kids. The only disadvantage to all of this, of course the week I'm gone for his surgery, is the same week Avrianna has her summer Girl Scout Camp. I will have to get reports of how things went each day via phones calls, so I'm kinda bummed about that. The good thing is, the only day Dan will be gone (day of surgery) so he won't be able to get Avrianna to n from the bus stop, is my mom's is day off so she's going to help out.
Avrianna is still loving all her summer activities, she is practicing for a play that she is going to be Wendy from Peter Pan which she is very excited about. She also has been playing with her friends. I'm so glad we built here, wonderful families around us the area is so nice to raise your kids :)
Bailey is still sporting the cone of shame even though the wounds are healing VERY well she insists on licking, Grrrrrrrr. I do think it will only be a couple more days and she can be "trusted" to have it off more often.
The garden continues to grow! Honestly I am pleasantly SURPRISED at how well things are doing, now to see what the final out come does at harvest time.
The Peas
The Beans
Our Corn
The pepper plants and Tomato plants

The cucumber/and pickle plants

Zucchini

Thursday, June 17, 2010

Waiting

That sums it up around here....alot of waiting. It's not necessarily a bad thing, but none the less still waiting.

Bailey went on Monday to have her staples removed and she was a trooper. I know I wouldn't take it as well as she did. BUT she still needs to have her cone on as the one side is still looking icky and she won't stop licking it. I am taking her in once again today as I found two staples that were hiding, I guess, so off to the vet we go.
We put duct tape around the edge as she LOVES to ram anyone and anything with that cone....I think in hopes that if she annoys enough it will get removed, LOL NOT!
Our garden is growing like crazy due to the heavy rains (unfortunately so is the weeds)....but here are some recent pictures of our 1st garden.




Even the plants that the deer hit/ate are growing back :) I'm going to have veggies coming out of me ears this fall, LOL. Get ready Lisa :)
I am still waiting for confirmation on the date for rescheduling Danny's surgery. It is tentatively scheduled for July13th and we've decided to opt for the VEPTR 2. In talking with other physicians and parents that have kiddos with the VEPTR I think it is going to be the best option for Danny right now. We are still waiting (1 week) for the neurosurgeon to confirm that July 13th will work for him as Danny needs that ITB pump catheter repositioned and I want it done when the VEPTR is getting done, get r done all in one shot. It amazes me that it's been 1 week and the neurosurgeon's "people" still hasn't been able to get in contact with him to confirm.........not getting the warm fuzzy once again.
We are continuing to enjoy the summer season. Avrianna is now in drama, right the prefect thing for her. She is enjoying the doing what she does best.......DRAMA! The weather looks to be wonderful over Father's Day weekend :) Dan's dad and Claudia is coming over for the weekend and we are all siked! Good food, Good drinks, and great company!
We were suppose to have our family pictures retaken this morning but unfortunately something came up with the photographer so we've rescheduled it for next weekend. I'm excited that we are going to have another opportunity to retake them. Even though some of the ones I did get were nice they really weren't what I had hoped for....so we're going to have more pictures of us together taken. I would have been devastate if something would have happened with Danny during his first attempt at the back surgery because there is really on one nice picture of all of us together and I want to have a GREAT one. I know I'm crazy, but I just want to have the best memories possible. I can only hope the weather will be as nice as it was today so we get the opportunity to have outside pics of all of together. Here are the pictures that I liked from the first time she was out.










As you can see they are very nice :) But I can do head shots of the kids....I guess I was looking for more things that I can't do.
Thanks for stopping by and checking in on us!

Tuesday, June 15, 2010

Wednesday, June 9, 2010

The cone of Shame, LOL

It's never a dull moment around here :)

Well Ms B (aka Bailey) some how bent one of her dew claws on Wednesday. So Thursday morning I brought her into the vet..........yeap she had surgery to have both side removed, seeing she was a "repeat offender" of the dew claw. She did great in surgery....they did find a heart murmur and an inhalation defibulation with her heart (meaning her heart beat faster when she breathes in), but she's going to be 10 in Sept so I'm not surprised her system has some issues. We got to pick her up at 4 in the afternoon the day of surgery and she was loopy, poor thing

Saturday I was able to take off her bandages. I thought something was going to be up with the left side as Friday evening she was acting like she was in alot of discomfort and not putting pressure down. When I took the bandage off it was still actively bleeding , swollen, and had some green/yellow goo coming out, sigh. Back to the vet we went Saturday morning......she has an infection, UGH. They put her on another antibiotic, more pain killers, and re wrapped the wound on just the one side as the right side is doing great.
This is the "good" side. I was amazed at how many staples they use and such a big incision for just a dew claw

So on Monday I was able to take off the left side bandage.....it was still bleeding and not looking right. BACK AGAIN to the vet we went. She needed 2 more staples added (unbelievable that she allowed them to do that with no numbing stuff), it still looked infected and was still bleeding. Of course she showed her true licking abilities when the bandage was off at the vet so on came "the cone of shame", LOL.

Bailey in NOT liking the cone on, but seems to be adjusting. She'll ram everyone and anyone with that thing in hopes that someone will take it off, poor thing. I will take it off for her to eat and drink, but other then that she has proved not to be trusted as she'll lick at the sites, UGH!!!!! We have to go back on the 14th (if everything goes well and we're not back before) to have the staples removed.
It's always something, right?
In talking with other parents and with some of Danny's doctors........I do feel the VETPR2 is going to be the best route for Danny at this time. Not only will it allow for him to finish growing it is a shorter surgery that will hopefully be less stress on his body. The surgery scheduler is looking at when we can get Danny in as I would like it to be within the month. I am hoping that way he will be nearing the end of his recovery when school starts next year. I will keep you all posted on when it's going to be.
Avrianna has been a busy lil girl with trying to figure out what to do with this summer break. She's done alot of playing with her friends. We've made a chore/attitude chart for her summer break in hopes to continue structure and education during this time off, let's hope it works. I was very impressed with her willingness to add things to the list and her help in making the rewards if things are complete plus the penalties when things are not done. Next week Avrianna will start the summer school program from 12-3 Mon-Thurs for 3 weeks with Drama (boy is summer school different from when I was a kid...then it was like a penalty not doing all the fun classes). She also starts her Friday Go Girl Go class through the park n rec which is designed for girls in 3-6 grade to have fun and help them with making "good" decisions. In the middles of July she will be going to a Girl Scout Camp for one week, going back n forth except the last day she will be sleeping over. She's very excited to go as one of the neighbor girls and fellow brownie members will be attending it with her.

Our dedicated farmer......in the pouring rain replanting more tomato plants, LOL. It's been very cool and rainy around here the last week. Which has made for wonderful garden growth. There are flowers and sprouts coming up everywhere. Plus the fence as (so far) worked in keeping the ever hungry wildlife out. Woot Woot!

Wednesday, June 2, 2010

Competing with Wildlife

Ok the morning after planting our garden and................................


ALL the tomato plants have been chewed. I guess the deer like tomatoes too, grrrrr! The good thing is that the tomato plants are the only thing that they ate.
So today Dan and I worked on putting this up............ 6' fence!
Then I had to cover my strawberries as the birds were gutsy enough to land and pick off the red ones right in front of us. grrrrrrr!
Well I guess the wildlife thinks I have a buffet right here in my back yard. I can only hope our efforts to keep our garden safe make a difference.
Yesterday Avrianna wanted to make dinner by HERSELF. So she chose to make us Mac n Cheese.....here she is hard at work. Her first stove top meal that she did independently......ok stop growing UP!
The end of the school is coming on Friday and I'm sure it is going to be a bitter sweet thing for Avrianna as I know she is looking forward to more sleep and play time but she's gotten quite attached to her teacher Mrs. Kubiak. Many a tear will fall you can bet on that one. I do have to say she is a fabulous teacher she made the transition from home schooling to public school very easy on, not only Avrianna but myself. Thank You Mrs Kubiak for a wonderful school year!
Well I feel as if the vultures are out to get us with the whole spine surgery thing. I received an email yesterday morning with some of the newest developments in regards to rescheduling the procedure from the orthopedic surgeon. His thoughts were that maybe we should consider a different approach to Danny's kyphoscoliosis instead of the spinal fusion which would be going with the VEPTR. This was an option that was toyed around with in the early stages of the curve but this Jan I was told due to the severity of the curve (80 degrees) and because the curve was so low in his lumbar it wasn't an option for him any longer. So now I'm very confused! I'm trying to figure out if Danny's best interest is being thought of here or is it due to someone trying to cover their own @$$. I'm not sure what's going on but I have alot of questions that need to be answered. I've sent out my questions and thoughts in regards to this newest idea to the doctors involved to see what kind of answers I get from them. I'm at a total loss for words as why something flat out wouldn't work in Jan but now it does. Is it because I pissed n moaned enough about care and quality of life that there is such a turn around. From the research I've done it does in deed show to improve chest capacity and scoliosis but in the mid to upper spine not the lower levels such as Danny's as you can see from the xray and picture of him sitting up (straight for him)and Danny's chest capacity is really fine. Yes, this VEPTR is a shorter surgery and less blood loss, BUT if it won't improve Danny's issues I'm not going to proceed just to make someone else feel warm n fuzzy. So more research goes into this, before decisions are made. We will put our heads together to find the RIGHT decision for Danny.
For now we are enjoying our family being healthy and happy plus the warm weather has helped out alot too :)
Today I had an appt with a Chiropratic Neurologist about my MS. I'm very excited to start the process of unwrapping some of the hidden medical issues that could be helping to feed my MS. I'm hoping to find some answers that could help me help slow down the debilitating process of this disease.....instead of throwing med after med at it with no real results. Not only is he a dedicated physician but he also has MS himself so there is this connection that what I'm saying he truly understands. I have another appt with him next week to see about starting all of the testing, wish me luck for much needed answers!