Merry Christmas 
Wednesday, December 26, 2012, 20:01 - General, Christina
Posted by Administrator
Merry Christmas Everyone!!!

Christina and I had a great Christmas. Christina was pleased with her gifts from Santa. We had lots of fun over the weekend. I found a sled that would work for Christina and pulled her around the yard and up and down the block. She did a great job holding her head up.

Christina's two front teeth also came out. At bedtime we put them under her pillow for the tooth fairy. It was very cute when she reached under her pillow to grab the bag they were in and pulled it close to her.

ER Visits 
Wednesday, November 21, 2012, 06:49 - General, Christina
Posted by Administrator
After a couple of scary trips to the ER Christina is almost to her usual self.

Thursday after a full day of school Christina went to speech as normal. After speech she had some spots that had formed around her neck and ears. Further inspection showed more spots in various places all over her body. The spots were scary similar to when Christina had serum sickness so there was little deliberation on whether the ER was the next step.

Having care facility choices we opted for Luther (Mayo Clinic Health System) this time. As of yet no one is sure what Christina has. The doctor who saw Christina came up with a plan and informed Angela and I of his choice and why. We were home before eleven that night. Christina even had a beautiful blood draw when lab came in. Thank you Sara. Our instructions were to see Christina's pediatrician on Friday and to start a round of steroids and pain medication to address the spots and discomfort.

Christina made it to late morning and the ER started to look like the activity for the day. After more observation and a nap for the princess, Christina was at the ER by noon.

By 13:00 (1:00 pm) they were still trying to start an IV line. Having 'blown' a vein so bad on Christina's right arm they had no choice but to try only the left. Christina's forearm is three quarters covered in a bruise from the blown line. Making a good effort they brought in the ultra sound machine. They got the line with a cobble job which also left a half dollar size bruise on her left arm. Then they had to draw blood for labs so another stick. Using the ultra sound to find their way another poke and 'fishing' to get the blood. By fishing I am referring to the in and out and side to side motion they do with the needle while trying to draw blood when they can't get the needle in right. So another half dollar size bruise on her left arm. Then the IV, by the time they were done Christina had tape from her wrist to her shoulder to hold the IV needle and line in place. After two hundred ml of fluids they slowed the drip to 15 ml/hr. That would be a rate used with no medical benefit. It is used to keep the line open just in case. They could have unhooked the line and left the IV in.

Angela expressed her concern to the ER doctor and nurse for Christina's tone and pain. From the time I got to the hospital at about 13:00 I first saw the doctor come in at 16:30 (4:30 pm). This was not by his choice. Christina's pain and tone had become so bad she was hard to hold and to handle. We called the nurse so she could call the doctor. After four and a half hours he told us he was waiting for another doctor and had already sent her a page. He dismissed our concern by not even answering and left the room. As Christina's pain and tone get worse without being kept in check we called the doctor again. He came in told us again he was waiting for another doctor and to summarize '...did not want to treat Christina'. He was told to do something now whether it be giving Christina medication to break up her tone and to offset the pain or to get the doctor. Not page her, get the doctor. The pediatrician was in at 17:00 (5:00 pm). After fifteen minutes of beating around the bush we still had no answers. After waiting for five hours and being patronized we wanted answers.

Thinking back I am trying to figure out how they could be so bad at their job. They had records from their facility, records from Sacred Heart, and records from Children's Minneapolis. All these records were at the ER on Thursday night.

After looking at Christina's chart and coming up with her own plan for medication the pediatrician shared with us her plan and went to write scripts. As she was describing her thoughts on medication Angela and I looked at each knowing something was not right. Just wanting to get Christina home and not able to put our finger on it we did not say anything. Discharge papers followed soon and we were on our way home.

Once out of the hospital we read the info from Thursday and compared it to the info from Friday. The information from Thursday followed suit with what the pediatrician told us on Friday; however, her information was the opposite on half of it. So we followed the directions from Thursday.

The weekend was mellow with lots of reading. I woke Christina up for school on Monday, but the princess did not want to go. I tried to push a little knowing she enjoys school and it may help seeing her classmates with a definite 'no'. We went to see Christina's regular pediatrician Monday afternoon. We are weening the steroids and the diazepam use is minimal. The hydrocodone use has slowed, but is still enough that a close eye must be kept.

Christina is fighting to be back to her typical self. She went to school on Tuesday and went to speech afterwards.

Busy days 
Wednesday, September 19, 2012, 18:41 - General, Christina
Posted by Administrator
Where does the time go?

Christina has therapies 4 days a week after school. These first few weeks will take a toll on the princess. Christina has been feeling much better and is almost completely over being sick.

I am a slower healer this round. A solid night sleep should help. Maybe tonight I can get that in.

The off-site backup is running. Only a couple months to go. lol.

Picked up the items needed to make a small sledding hill this winter. I think I will find a spot for a snow fort to and prep that also.

I have slacked on finishing the new seat for Christina's wagon. I will try to finish that on Friday. I also have to get the lights hooked up as the days are getting shorter and lights will be handy.

Wednesday, August 08, 2012, 08:40 - General, Christina
Posted by Administrator
Lots of appointments coming up for the princess. Lets see...

Pre-op, Phenol blocks and Botox shots, Dr. Walker, AFO fitting, school.

Along with swim therapy once a week and Young Athletes twice a week.

Christina definitely likes to go go go.

Christina has also been doing well using the diazepam. There was a day her tone was outrageously high. And she had a small fever that afternoon and slept a lot. Probably caught a bug and her body needed to fight it off.

As per usual, Christina has been chatty and Tuesday was very giggly.

Getting Tall 
Monday, August 06, 2012, 09:24 - General, Doctor
Posted by Administrator
Christina's last physical confirmed the princess is growing like a weed.

Christina weighs in at 33 pounds and is 40.5 inches tall.

Christina has been loving the water with the hot weather. She has also been super talkative. ST is done until next semester. Young Athletes starts tomorrow and the water therapy continues. School starts just around the corner.

Another Update 
Saturday, July 14, 2012, 10:14 - General, Christina
Posted by Administrator
Christina's tone has been very bad. It may be the cause of the spots. We started Valium to help with the tone and it seems to be helping a lot. Christina has been in even better spirits than her cheery self.

Not much else going on. Still going over the IEP and getting frustrated.
Summer Time 
Saturday, July 14, 2012, 09:24 - General, Christina
Posted by Administrator
Christina has been enjoying her summer.

There have been some rash outbreaks, fevers, blah feeling, but Christina has been a trooper through it all and still wanted to play.

It has been extra hot lately so our outside time has been in short durations. I think Christina misses going to school and seeing her classmates. Various therapies have started and that fills in some of the gaps.

Christina had a doctor appointment was fitted for another pair of AFOs.

Christina's tone has been worse and we started her on Valium to help relax the muscles.

Happy Birthday Christina 
Wednesday, July 04, 2012, 08:33 - General, Christina
Posted by Administrator
Happy Birthday Christina!!!

Six years ago today, Christina came to walk with me on this journey.

Love you Christina!

Happy Birthday Christina! 
Wednesday, July 04, 2012, 08:27 - General, Doctor
Posted by Administrator

The beautiful princess Christina turns six today.

Christina, you have taught me to appreciate every moment.

Watching you has also inspired me to always have determination and to never give up.

Lots of kisses for you.

Friday, April 13, 2012, 15:32 - General, Christina
Posted by Administrator
It's been a busy time. Couple friends moved and I gave a small hand. Christina has wanted to go go go. The holiday came and went.

For Easter we went to grandpa's house. Last weekend we went to the Children's Museum on Saturday. We colored eggs and made cookies.

And we have been walking a lot outside in the gait trainer.

This morning Christina lost her first tooth. She was super excited.

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