Chubba Wubba's Birfinday

I cannot believe that this little honey would have been 6 years old today... We sure miss his little face. I could never have imagined 6 years ago he was going to be taken from me and 5 years ago I never would have imagined I would be where I am today.

His birthday has been more of a day of reflection rather than a sad day. I wanted to feel melancholy and heartbroken but I can honestly say that time really does heal. I wouldn't say that my heart is fully healed, but I am not in the same place as I was 5 years ago... And thank goodness. 

We try to make him a part of our daily lives and even Isabella knows him. The other day she said, "mom, I don't want Daxton to be on a mission anymore. I want him to come back to life and play with me." Pretty much sums up how most of us feel daily. Little kids are so smart.

For Daxtons birthday we went to the Dubois park here in Florida. It was pretty cool because it is a wharf off the ocean and it's a huge "pool" that's only knee deep even for the littles.  

So far nothing can get her down. She wants to be up and at em all the day long and doesn't want to miss a beat. She is getting along in her walker just great an pushes herself a little bit too hard each day. But she is healing and trying to obey all our rules ;).

Since I am such a good mom I totally remembered to put sunscreen (NOT) on the girls and they are all burned. Luckily savannah was under the tree the whole time and Scarlett had her rash guard on so they were unscathed by the current tragedy....

Scarlett is taking a little ride in the wheelchair. She thinks she is pretty hot stuff. After the beach we came home for naps/quiet time and then off to Costco. I think Costco is my nemesis. We have a love/hate relationship. I love to shop there but I hate spending all my money there... Especially when I am starting from scratch buying for a new place.

I don't know when these littles got so big. It's sort of killing me actually. I am glad they are getting big but it's sad too.

The kids went to visit the cemetery because we are obviously a little too far away. We had big plans to go to the beach and release balloons but little bug (savannah) was too tired after all our gallivanting.... But we DID have some peanut butter cup banana ice cream and I made a delicious chocolate chocolate cake ;). Calories don't count on day like these.

Poor Scarlett fell asleep as soon as she got in her seat. She was SO exhausted. After a long day we were grateful for bedtime. Ok I WAS GRATEFUL for bedtime. 

Big Firsts

Today was our first day of physical therapy and our first day of limb lengthening. The device is pretty slick. I will show pics tomorrow. 

My days are starting to run together so hopefully I can keep up blogging every day or close to that! 

First of our firsts... Savannah has ripped (prematurely) all of her bandages off and began picking at her stitches (pulling several out) and leaving open wounds to dig at. Awesome. An she does this at night so other than stay up all night drug her with Benadryl or strap her to her bed with restraints I really don't know what to do. We went to the office today and I begged for something to cover it... I barely walked out with some tegaderm (fancy tape) and telfa (fancy bandaid). I will be asking for something every day to keep this wound covered because as much as I LOVE it here I do not want to have to spend extra months here doing wound care/control....

Today was super frustrating because for the last week I keep asking the same questions always eliciting the same answer, "we will go over all that later"... Ok well when is LATER?!?!? It's all very frustrating to be on the other side (patient) because I am usually the one withholding answers to parents... And I really try NOT to do that. I've about seriously has it up to my eyeballs. I know that next week that it will all be old hat but I'm struggling right now. If I could just get some answers that would be really nice. You would think with this set up that it would all run really smooth and it would be easy to sit down with me for five seconds and talk to me.

Alas it is BUSY season right now so pretty much if it ain't pressing it don't matter....??? Ya not sure how long that's going to fly. Probably about another two days. We are trying to get Savannah's picking under control... Though I'm certain that won't happen, but I've got it all tegadermed and covered and covered again so hopefully she will be deterred if for bit a moment. I told her if she picked I would have to buy mittens and tie her to her bed... We will see if tries me, but I'm dead serious.

Our first therapy session was very sad. I think savannah is in a little bit of pain through it but I also think she is milking/manipulating the situation... And that's based on her behaviors all adding up. I am sure she feels some pain. Absolutely. But I have to figure out if its pain or manipulation. And that's a bit tricky. Hopefully tomorrow will be better. We have therapy 5 days a week while here. Dr Paley says if you don't do physical therapy you may as well not have even bothered with the surgery. So we do therapy ;).

Our first day of turning was today!! It was actually quite remarkable the device and how it works.doug asked all the mechanical questions and I asked all the medical ones ;). Engineer and nurse. Good combo. We will lengthen with "tony" for a few more days and once we have a handle on it we will bring the device (a HUGE BOX) home and do it ourselves. It will save us oodles of time from having to wait an hour for tony to show up and teach us to lengthen. 

I made up some chore charts and put them on the wall. We also made a list of all the things we want to do here this summer. Going to be busy ;). And hopefully I can teach the girls a few things. Tonight Mikenna was teaching Doug how to swim. She was giving him very specific instructions and was doing a fine job in making him a better swimmer. I will have to use her as my coach. Who knew!!! I can save thousands of dollars... Well actually unpaid that for club swim so now I get to reap the rewards. Lol!!!!!

It was also Doug's first night of crossfit. It was pretty good. It was a lot of instruction because they require you participate in the two classes before you can join the daily WOD. So big day with lots of firsts. Good night ;$) I've got to sleep so I can get to the "box" in the am ;)

Post op day one

KSavannah has done amazing with post op. we have tried really hard to keep her pain under control. It took me a bit to figure out that she doesn't understand the concept of "pain" and "hurt" is a better word for her... So we judge by how bad it hurts!

We did a lot of sitting this am. But by the afternoon savannah had had enough being in bed and was anxious to get out and about. The physical therapist brought her a wheel chair and a walker and we have been all around town... Only the wheelchair of course. We even "snuck" her out of the hospital and took her in a visit to the quantum house (on hospital grounds) to see the animals from the zoo and spend some time with her sisters. It was unofficially approved as when we got there it started pouring down rain! Awe crap!!!! So when there was a break I had Doug run her back quick...

The littles loved running around an exploring the quantum house. They colored pictures played on the computer ate dinner and watched a movie. It was fun to spend time with them since I have been gone a little bit. 

Savannah was a little bit tuckered out after her many walks and she was in a bit of pain so we had to work to get it under control. She had fun seeing Jannae and Mikenna Isabella n Scarlett and of course grandma when they visited. 

I had a bit of a run in with the lady at the front desk and her saying I needed I "read the sign" before I could even finish my sentence. She was so rude I couldn't even believe it. And I kinda let into her a little . I have just been so frustrated because it feels like in keep asking questions to the surgeons and all get is "oh we will talk about that later or you don't have to worry about that right now... I had had it today and emailed the parent outreach coordinator my frustrations. She was gracious enough to listen and I answer some questions for me.

I had no idea that savannah would have to wear a brace up to her mid thigh to ankle or that she would need a wheelchair and walker or that she would be incapacitated for a period of time and that her activity would b severely restricted for months! I didn't even know how long the surgery was going to take or how much time we would be springing in the hospital.... Well I'm falling asleep so I better go night nigh