HAPPY HOLIDAYS!!!

Just in case I don’t get a posting in before Christmas.  Merry Christmas and Happy New Year from the Germans!

We survived both of the girls slumber party.  That was the first time either of them had one mainly because of Dani.  She did well with all the added noise.  Rex loved the extra attention all the kids were giving him.  He even had to show off quite a bit.

We had a nice Thanksgiving at Tea. 

Dani met a very nice surgeon.  At this stage in the game, it takes a lot for us to be impressed by a doctor.  And I was.  You don’t find too many surgeons with bed side manner or a sense of humor, it was an awesome change of pace.  He even talked to Dani on a couple different occasions during the appointment.  Either he hid it well, or he really wasn’t that “scared” of Dani. 

Now, will the surgery be done in Sioux Falls or St Paul?  This we don’t know.  He is very concerned on how small Dani is and does not want to cause more harm then good.  Which we can totally understand.  These concerns were voiced in St Paul as well.  And it is always with Dani, there really isn’t a clear cut answer on what we should do for her.  So, we will see if in 2010 that Dani will undergo her Baclofen Pump surgery.

For the last 10 days, Dani has been battling a cold.  This is the first sickness in TWO years!  Dan had a bacterial infection and cold himself.  We are fortunate that Dani’s pediatrician prescribed an antibiotic for her just as a precaution in case she developed what Dan had.  We kept her cold as just that, a cold.  We did nebs every 4 hours as well as her vest therapy.  (This is a vest she wears that thumps on her chest pretty good to help clear out her lungs.)  If Dani woke up in the middle of the night coughing, Dan would neb her.  Thankfully, after all our efforts, this did not develop into pneumonia for her and NO HOSPITAL STAY.   

It has been 2 years, but we are attempting to bring Dani back to Sisseton for Christmas.  She hates change and usually has a tough time traveling.  Not to mention that she is such a treat to pack for!  But Dani is only going to Grandma Donna’s, so if you want to see her, you’ll have to come to the farm.  We don’t think she can handle traveling to see all the relatives, too many new smells and too much noise.  We are hoping that this will help her out.  We will be back on Christmas Eve and leave in the evening on Christmas Day.

Other than that, it has been pretty “normal” and “quiet” in the German household.  Two words that you usually don’t use to describe our household…

Happy Birthday Dan and Brianna!

On Tuesday, Dan and Brianna both celebrated their birthdays.  Brianna was pumped to finally turn double digits!  Brianna hosted her first slumber birthday party.  Wow.  Who’d thought that 3 more little girls would add so much more noise?  Poor, Dani!  Kaylee ditched the party and stayed overnight at Uncle Tony’s.  Dan actually let the kids go into his man cave and they had fun playing Rockband and watched a movie.  Although he was kinda twitchy and over anxious for the safety of all his “toys”!  Grandma Donna came down for the weekend.  We did some Christmas shopping.

Questions in therapy….

 Kaylee-Can Dani think? Sometimes I think she is thinking when I go in her room, is that my sister Kaylee? And other times, she just seems out there.

Brianna-Is Dani happy? Or would she be happier in heaven?

Also items that came up, is Dani lonely, is Dani depressed and does Dani miss us? The same issues Dan and I wrestle with, our 9 and 11 year old girls are pondering the same things… 

Last night was Brianna’s conference. First, I would like to point out that just by walking down the hall, I was able to pick out her locker without having to read the name on it. It was the one with the shoelaces and paper sticking out the sides! Brianna had to write an assignment about Bravery, Friendship, Fear, or Occupied. Here is her writing…

I was very scared when it was 2006 and my baby sister Dani stoped breathing at 5:00 am we got dressed and rused to the enmarcay room. At first I thought Dani was going to die so did my sister but I was only 5 or 6 so part of me cared the other didn’t. I was still little so I did not know what to do. After 30 mintens or so my mom came to talk to me and my older sister. She didn’t die but she got brain damge. We are still trying to get her better. Back when this happed she was 1, now she is 4. The nurses mad a mistake if you were woudering how she got it.

This breaks my heart because I can’t shelter Brianna or Kaylee from all this hurt in our family and they shouldn’t have to worry that one day their little sister may die. I hope and pray that this experience will be a positive one for them and not affect them in a negative way.

No news is good news from us…

Wow, can’t believe that this is my first post for the month of October. Sorry, about that. Dani has been good, ha , for once but probably won’t last. She was scheduled for her Baclofen Pump surgery. Yeah, we finally got her up to the acceptable weight. Dani is experiencing more and more intense muscle spasms. They once again wake her up in the middle of the night. Of course, it gets us up too. We have seen a little increase in the intensity for her seizures at times. Dani has been healthy so far this season, not even a cold yet. KNOCK ON WOOD. Dani’s doctor cleared her for surgery. Dan and I made arrangements for the girls and started the fun task of packing. Only to find out the day of us traveling to St Paul, her surgery was canceled. There was no room at the Inn. The PICU was closed due to H1N1 and would be closed all week. Do you know how hard it is to go to work on a Monday when you already had the mindset you were going to be on vacation! We have not rescheduled Dani for the surgery because we are looking at other options for her surgery. It seems I must have been a little “vocal” about her surgery being canceled that it opened the door to a new neurosurgeon in Sioux Falls. (Me vocal? Ha) I am in the process of getting a copy of her extra “tiny” medical file from St Paul to see if the surgeon in Sioux Falls will take her case on. Dan and I are toying with the idea if he does take her on, to have a dentist cauterize her gums and clean her teeth. Her drool is getting ridiculous again but we will not put her back on that Robinul. That caused too many other issues for her.

We have been having our fun time with the nurses. Only fired one. This is a huge improvement for us! She was a TV junky that gave Rex more attention than Dani. I think Rex actually went into withdrawal after she was fired! I am sorry, I will not have a nurse that does not have enough respect for Dani just because she can’t talk and to leave her in her bed ALL day.

 Kaylee is adjusting to 6th grade. Wow, time flies. And as any girl in 6th grade, we are experiencing the “friend issues.” Kaylee seemed horrified when I told her it is only going to get worse. Hopefully we can work through them. Kaylee quit band, seems this “friend” that we do not like said “Band is for nerds” and that was enough for Kaylee. Since she quit on the fly and didn’t tell us, she lost her dance privileges. Tough learning lesson for Kaylee.

Brianna is a 4th grader. She is my tomboy. She just finished up Fall Soccer. Kaylee and Dan both agree that there is entirely too much running in soccer. Dani was able to attend a couple of games. We missed the cutoff to get her in Basketball, so hopefully we have a couple of quiet months? Dan got the girls addicted to Sims. They recently upgraded to The Sims 2.

The girls are ready for Halloween tomorrow. Both were upset that Dani is going to be Batgirl, AGAIN. Like, why would you do that Mom? Sheez, you’d thought that I committed a crime or something. I will post some pictures.

On Tuesday, it is Dan’s and Bean’s birthday. Brianna is going to have a sleepover next weekend. Kaylee turns 12 on the 28th. Yes, we always go broke right before Christmas. Didn’t plan that very well at all!

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

Dani had her 4 year check up. Luckily, the State sends out letters informing us that we are behind on her shots. We forget the “normal” stuff with Dani. Her pediatrician was impressed with her weight gain and how well she has been doing. We discussed the possibility of taking her Port A Cath out when she gets her Baclofen pump placed. Currently, we drag her to the hospital once a month for it to get flushed by the nursing staff there. Knock on wood, but we have not had to actually use the port for quite some time. Since she is getting put under, we would like to kill two birds with one stone. Dani got 4 booster shots as well. She didn’t get as mad as I thought she would, but she did let the nurse she didn’t like the shots. The doctor also discussed that in addition to Dani getting the flu shot, she will have to get 2 boosters of H1N1. This goes for the other two girls as well. Dani will go another winter without the RSV shots since she doesn’t hit all the requirements for the insurance to pay for it. If I had the $68,000, she would get the shots. We are gearing up for another flu and cold season. I am worried about this year. The last two years, we have kept her healthy and out of the hospital. This is a far cry from a hospital stay every two weeks! However, it is different this time around. Dani has 4 different nurses coming in on a daily basis as well as OT and PT. More people equals more germs. But I am sure I am worrying for nothing because she has shown over and over again that she is one tough cookie!

 Kaylee and Brianna are adjusting to waking up early once again to get to school. It will be a few more weeks before Rex adjusts to them not being here. It is quite funny to watch him run from room to room looking for them. Especially on the hard wood floors 🙂

Dani’s movies – Enjoy!

“Dani is starting to look healthy”

 That was a quote from one of Dani’s doctors. She has stopped throwing up her feedings and actually digesting them. She is packing on the pounds. She is even starting to get a little belly on her. Her goal is 32 pounds in order to go ahead with her Baclofen Pump surgery.

Dani had her GI appointment today. She is 31.5 pounds! Dani is in the 25th percentile for her weight and 50th percentile for her height. She is almost at her goal! Dr Doubledee did not make any changes and is impressed with her progress. He asked what we had plans for her after she reaches her goal. I said we wanted to maintain her weight at the 32 pounds but yes, back off her packing on the pounds. He said that was a good idea because he sees too many G-tube kids that are extremely overweight.

Dani’s rash is gone. It took a dose of steroids to get rid of it. Yipee!

Today was the girls’ first day of school. Kaylee is in 6th grade and Beans is in 4th. From the sounds of it, it was a good day and they were glad to be back. Kaylee was impressed that she actually got choices at lunch.

Dan was offered a day hours and he took it! Last weekend was the first weekend we were a “normal” family. It was nice having him home, although we have very different routines for Dani. Since Dan is home, we let the girls pick a sport to play in. Beans picked volleyball. That’s my girl! Kaylee, well, she picked Cheer. I first had to point out, that’s not a sport. I should have stuck to my guns on that one because WOW, it is on the spendy side.

 I am down to my final 3 classes for my IT degree. But I am getting to the point, where I just want to take a break. I am tired of balancing work, school, and family life.

Poor Rex, he first has to adjust to nurses during the week to now, the girls going back to school. It has been quite the adjustment for him!

Sorry for the lack of updates on my part, but I have been going by the theory, “no news is good news.” Dani is doing great (knock on wood) and the only hospital stay she has had the last year was one we scheduled for her botox shots! This is the first time since her brain injury we have not hit our out of pocket minimum yet!

Eczema or food allergy???

For the last couple of months Dani had this rash on her chest. It is light in color, but when she is ticked off, it will get bright red and radiate to her back. We haven’t changed laundry detergent, we actually use the perfume free kind. Since it wasn’t going away and now will get bright red at times even when she isn’t ticked off, we brought her in to the doctor. Dani is drooling a lot lately and we have a bath towel under her head to soak up the drool. But she is always on her side and the drool never goes down her chest. The only other thing we changed in the last couple of months is the oil we are adding to her feedings. The dietitian wanted us to us canola oil but Dani had a tough time with this. We changed it to olive oil and she seemed to do better with this. Could it be a food allergy that is causing her rash or did she develop some type of eczema? We are going to take her off her oil for 10 to 14 days to see if her rash clears up, if not we have a prescription we can try on her. Dani must have felt she didn’t have enough doctors yet and wants to add a dermatologist???