Never a clear cut answer or decision for Dani’s care…

Ok.. we just made it back from Dani’s fast trip to St Paul to see her neurosurgeon. Dani weighed in at an impressive 33.7 pounds! 32 was the goal for her to be at. The neurosurgeon was impressed with her little budda belly. But, yes there is ALWAYS a but when comes to Dani. But despite the nice gain and her reaching her goal, Dani has a short torso. (I have no idea where she gets the shortness from!) The Baclofen pump which is roughly the size of a hockey puck fits between her rib cage and hip bone. But there is only a ¼ inch leeway on each side. So, in other words not much wiggle room for her. It could rub on her rib cage and cause more pain and discomfort for her.

The positives for going ahead with the surgery are the it will improve her quality of life and take away the majority of her pain. Not all her pain, but the majority. The negatives for not going ahead with the surgery, that there isn’t enough room and the device could break open her skin, leaving it exposed. Given the type of CP (cerebral palsy) that Dani has, there is a 70% chance that the Baclofen will speed up the scoliosis to her spine. This is one concern that we are not worried about because if Dani is more relaxed, she will get more tummy time. Her tummy time was actually helping decrease there scoliosis. The third thing the doctor brought up was of course, infection. He does not think Dani will be able to really fight and infection to the device due to her “frail” status. This is where Dan and I agree he clearly isn’t given Dani enough credit.

He did give other options on some other medications to try if we wanted to get her up to 40 lbs and of course another round of Botox and Phenol shots. Dan and I also both agree that she will NOT undergo the Botox and Phenol shots. If she is going to get put under, it will be for surgery, not the shots that cost over $15,000 to last barely 3 months for her!

We had our 4 hour ride back to Tea to discuss the pros and cons for Dani. We will be calling her neurosurgeon in the morning to schedule Dani for the surgery. Not that we want her cut open and have to depend on yet another foreign object in her body, but we feel that this will be the less of two evils. He did say that kids like Dani that get a Baclofen pump place, will have a huge weight gain. (Because they aren’t burning all their calories fighting the muscle spasms.) We are hoping this alone will increase the wiggle room for the device.

Is this the right decision for Dani? Who knows? All we can do is weigh our options, do our own research and hope for the best…

Behind again on her updates, I know, I know…

Dani is doing pretty good.  Man, is she getting heavy to carry.  She is even getting quite the little belly on her!  Dani goes to St. Paul the 22^nd and 23^rd of October.  Then we will get more details of her next surgery.  I hate to see her go thru another surgery, but if it is able to take away most of her pain and help her not be so tight, I’m in.  The Botox shots are wearing off.  She jumps at every little noise and is getting quite tight again. 

Dani is adjusting to her new schedule with nurses.  Why does this always have to be a struggle with us to get a good nurse?  Instead we are dealing with some TV junky nurses that ignore Dani.  We are trying to stay calm and positive but it is really hard to accomplish that.

The Tank (Jasmin) turned 3 this month.  We had fun at her birthday party.  I celebrated another year as well.  When it come to how old I am, I always have to think how old Kaylee is and add 20!  Must be old age kicking in?

Dani has her weekly chiropractor visits as well as a dentist appointment on Monday.  She HATES her teeth brushed!  She gets quite ticked off at us! 

I am trying to come up with more economical ways for her website.  Her guestbook will be changing a little. Also, for all you Facebook people out there, Dani is now on Facebook.  Her screen name is Dani’s Journey