Dani’s appointment…

Dani’s routine CT for her shunts came back great! Dani had 2 subdural hematomas and they are basically completely gone. The Neurosurgeon said he couldn’t ask for a better outcome in her. He did talk about the debate of keeping the shunts in (since they basically aren’t doing anything) or taking them out. At this point in the game, he opted to leave them in. Because he did point out where Dani’s brain has not grown, there is extra fluid. So, just in case that there is a slim chance this turns into hydrocephlysis, the shunts are already there.

Now regarding the Baclofen pump, Dani IS too small for the surgery. But we knew this going into the appointment. He did get an “A” for effort on trying to see if he could get the pump to fit on Dani. But we concluded we need to “fatten” Dani before she can go through the surgery. I need to touch base with her GI doctor on Monday. He proposed to have Dani undergo Botox and Phenol shots for one session. Just to tide her over until she puts on some pounds. Since Dani has the bad girl reputation, all precautions would be taken. This would be done at Gillette Children’s Hospital with an Anesthesiologist and staff next to her in case she pulls out her big guns. But this is not set in stone or 100% agreed to. We still need to do our research.

I just wish that there is some way or something that I could do to take away her pain…

Brianna’s concert

Beans had her concert tonight. Dani conveniently crapped her pants right at the beginning and Dan had to take her home. Not sure who planned that one, Dan or Dani? But she stayed long enough to listen to Beans sing and play her recorder.

Another surgery for Dani is proposed…This would be #6…

Dani had her appointment with her orthopedic surgeon today. He is concerned on how tight she has become in the last few months. See, before she had all her medications that kept her loose, now she feels more and has more muscle spasms causing her to be tight and rigid. He ordered x-rays of her hips. Surprisingly, her hips are still in place! He talked quite extensively regarding her tone and how it will start to work against her as she grows. He even warned that one day her tone may cause her hips to pull out of socket. This is the second surgeon to propose surgery to put in a Baclofen pump to help her out with her tone. I asked if this is painful for Dani, since she is able to feel more since getting off all her seizure medications. He said he didn’t know how to answer that question only that the kids he sees after they have the surgery, show improvement. He compared it to rebooting a computer that is locked up, once it is rebooting, all systems are working better. I hate to see Dani go through yet another surgery, this would be #6, but on the other hand, I don’t want her in constant pain. It is bad enough to know she experiences pain but cannot always tell us that it hurts. We have an appointment schedule in St Paul with her neurosurgeon on Friday to see what he would like to do. Remember, he is the one to propose this over 9 months ago but Dani did not weigh 30 pounds to get it done. She is now 29 pounds. I am scrambling to renew my FMLA at work in case she gets the surgery done.

The orthopedic surgeon also did x-rays on her spine. Her scoliosis is getting worse or should I say more pronounced. Dan and I are looking at the x-rays and it looks horrible to us. He walks in and says “minor”. I think good god, how bad of scoliosis has he seen. She has about a 25 degree curve on her lower spine and another curve on her upper spine. At least we have a baseline for her scoliosis and the doctors will keep an eye on it. He did mention surgery if it got a lot worse, but Dan and I both agree NOT to do surgery on her back to put rods in.

This is a typical day in my world. Try swallowing the prospects of another surgery, realizing your daughters’ constant pain and then having to switch gears and go to work. It is surprising that I am still sane…or am I?

Dani’s GI appointment was good!

Dani’s GI appointment went well.  She gained 3 pounds!  So, much for failure to thrive!  She is doing well on her adjustment to “real” food instead of the milk based formula.  Dani has an appointment with her orthopedic doctor tomorrow for a follow up.  She is getting really hard to bend to go into her wheel chair.  We just want to make sure everything is ok with her hips and to get a consult on her spine.  Her scoliosis seems to be getting worse, not that we would do surgery on it, but to get a baseline documented for her.   Brianna has a concert tomorrow night as well.

Good News…

I just got word today that Dani is going to get her hardwood floor! No more crashing her wheelchair into the wall because of the carpet. We got approved from Family Support to get the whole upper level completed. We can’t wait. It will be a 4 day project. I have to say this has been the easiest approval yet. It kinda makes me skeptical. The estimates when in today and by the afternoon we had the approval. No fights, no arguments, no lost paperwork. I wish more things for Dani move this smoothly. We will see how Rex does with a hardwood floor!

Dani has a GI appointment tomorrow.

Happy Easter

We hope everyone had a wonderful Easter.  Ours was great.  We went to Brookings for the day.  Dan even took the day off!  It was fun.  I took Easter Monday off and we spent the day as a “family.”  We don’t get too many days like this since Dan and I work rotating schedules.  We went shopping, ate at the Cracker Barrel and then visited the new addition to the Brinkman family. 

News Flash

So, with all my expensive medical tests coming back Dani style (normal and inconclusive), the doctor is stating my bowel ailments are “stress” related.  Well, I do not believe this statement because it would have hit 3 years earlier.  But I go along and play the game and get referred to a shrink.  Wait for it, here it comes, her diagnosis of me…I have SEVERE DEPRESSION.  Now THAT is a huge shocker!  I would have never guessed.  Let’s see how you are after you witness your daughter not breathing THREE times.  You see her turning purple, then blue, then a dusky color.  You see the flat line monitor as a priest is standing next to you asking baptismal questions.  Then you painfully wait each day for her to wake up from her coma.  And when she does wake up, she no longer KNOWS who you are anymore.  Every day is a constant reminder of what she lost and that she isn’t the same little girl.  Then in 6 short weeks, she is in another coma, once again fighting for her life.  You stand by and watch her start to thrive.  Then in 3 months you’re delivered another blow as she is in her third coma.  Her brain is NO LONGER growing.  Every day you see her deteriorate a little more that you finally give into the doctors and place your daughter in HOSPICE.  You even have to plan her FUNERAL out.  Now tell me, who would not be depressed?  But it gets better in my shrink session.  Because you see then she diagnosis me with denial.  Denial?  What the hell?  Really?  Then she goes on how I will not get better until I go through the grieving process.  At this point, I am saying this is a waste of my time.  Because I will not grieve until Dani is no longer with us.  And the reason that I am so busy is because I need to stay busy.  Because once I slow down, that is when the depression hits.  So, since my faith in the doctors figuring out what is wrong is diminished, I stopped taking all the medications they have prescribed.  And surprise, surprise the last week I have had successful bowel movements on my own. 

Updates to the website…

Dani’s website is going to be changing (hopefully). Well as long as the software works, which it hasn’t been. Dani’s movies are in the process of being moved to her Journal. Inside the Journal, there is a page “Dani’s Movies”. There are a couple movies that I haven’t had on the website previously and I “lost” two movies. I am desperately trying to “find” them because one was the PICU at SVH and the other was the Goofy Goobers movie. I am adding a ton of pictures as well. Now, that is has almost been a year since we went to Florida, I am finally getting them on her website. Just a tad behind…