January 23rd, 2009

One year, two years and today marks three years.  Three years…three years…it has been three years.  I try to focus on the positive and the fact that Dani is still here with us, but the whole situation wears on you.

Then the “what if’s” start.  What if I just called the ambulance that night, what if I was more vocal in the ER room and insisted they use an oxygen bag on her instead of right away sticking that tube down her throat?  What if I went to the ER right away instead of waiting 2 hours?  You see these what if’s eat at me and they always will.  I normally have them buried so deep, but they surface, especially for milestones such as today.  I carry this guilt that will never go away.  I want to know if that doctor feels like this, is there any remorse, does this day affect her as much as it does to us?

Dani had many improvements since last year at this time.  Down 5, count that 5 seizure medications, in addition to many other medication that various doctors have prescribed during the last three years.  Even though she has regressed with tolerating her feeds, she continues to gain weight.

Many people ask how we do it?  My best answer, you don’t think about it, you keep rolling with the punches because the minute you stop, everything hits you.  You try not to daydream Dani playing with Abby or the Tank because it hurts too much.  Why do you think I keep so busy, work, school and the girls’ sports?  Because when I stop, Dani’s situation hits me.  No, it’s not denial, because I am first to admit that Dani has medical problems, it’s just the way I cope with the situation. 

I know most doctors are amazed that Dani is still alive despite her struggles, I have to admit that I am too.  She has been in three different comas, seizures plague her on a daily basis, 5 surgeries, numerous hospital stays, medications and invasive procedures.  She has been through so much and keeps going.  If I went through everything she has, I would have given up long ago.   And yet, she somehow still has a will to survive.

I thought that 2009 was going to be her year, but she is already running into roadblocks.  For example, her neurologist moving to California, having to change medical supply companies and the possibility that she may be starting to go thru puberty.  Why should I be surprised that things are not going her way?  It is always an uphill battle that we consistently get knocked backwards.  When does this little girl get a break or good news, because she is due some…

 

Dani’s GI appointment

Dani had her GI appointment today. Her weight was down a little but he wasn’t worried about it because it wasn’t much. The plan is to slowly work her up to bolus feedings then when she is doing well on them, we can introduce her puree diet once again. As to why she has been throwing up and gaggy with feedings this past year, he is at a loss to what is causing this. All the tests that were ran came back normal. Once thing that Dan and I question is that we remember being told before that Dani has a hyperactive gag reflex and maybe this could be the answer. At the end of Dani’s appointment, I brought up that Dani’s core temperature seemed to changed. She is no longer cold to the touch, she is running a normal temperature, and she shivers and sweats again. She actually sweats so much that she has quite the stinky pits. When I said this, there was a look on his face that seemed concerning. Then we had the conversation that kids like Dani go through puberty as a young age. So, we have to watch for other signs of puberty and if we see them, we need to contact him and he can get Dani into an Endrocologist. Apparently, if indeed it is puberty starting, they can stop it from happening.

 When Dani first sustained her brain damage, Dan and I took that pretty hard. Well really, who wouldn’t? Our daughter almost died. Then there was a long list of diagnosis, developmental delays, brain atrophy, feeding issues, epilepsy, cerebral palsy, spastic quadriplegia, autonomic instability, failure to thrive, and so on… When she got the diagnosis of cortical blindness, for me, this one was hard on me. First she goes from not being able to recognize us, not being able to communicate with us, and then being told she can’t see us. It was a big diagnosis to accept. And now this, the possibility of her starting puberty is just one more blow for me. My baby is only three years old…puberty….she is just a toddler. This is just a grim reminder to what was done to her on January 23rd, 2006. It seems with each diagnosis that Dani is being punished, punished for someone else mistake. When is she going to start getting good news, when is her life going to start go in the right direction?

Happy New Year

Well, so much for my New Year’s Resolution of updating Dani’s website on a more regular basis.  Oh well, it is the thought that counts???

Anyways, Dani is still doing ok with the continuous feeding.  She has a busy month, many appointments.   The GI doctor, neurologist, pulmonologist and dentist are scheduled in addition to her weekly chiropractor appointments. 

Beans will start basketball this weekend.  Since Dani did not do well at the parents meeting this weekend, I am afraid she will not handle going to the games.  If anyone is brave enough to stay with Dani for an hour on Saturdays, let me know.  I have recruited Kaylee (at a steep price) and Tony (very reluctantly) to help out so far.

January is busy month for birthdays.  Gracie, Uncle Tony, Great Aunt Marianne, and Grandpa Durand all celebrate birthdays.