Today Christina had her Phenol blocks and Botox shots. It seemed to take longer than usual for the princess to wake up.

Once again I will state that it does not get any easier watching your child get put down.

The hospital seemed a little off today, but I think it was more the new policies that are getting implemented. Each visit seems to have at least one new policy that interrupts the flow for awhile.

I'm feeling productive since as I post this I am backing up the pictures from the week. The backups should be done tonight then I will upload some pics for the slideshow. And for those paying attention, yes I did say 'backups' plural.Original, local backup, off site backup, redundant local backup.

Cheers.

Christina has her new wheelchair. She picked out the color and surprise it is pink. The fitting was yesterday and Christina was tolerant, but not thrilled. I know she will like the new chair, but like any of us the fitting part is never a good time. It went quickly though and overall the trip was not too bad. Now mommy and daddy get to watch for bruising.

How to put this... ummm... seeing the new wheelchair is harder this time than seeing her first one(the Kid Kart).

Christina also went to the Big Rig Truck Show. And wanted to see the Truck Light Parade. I have to share how we ended up going to the parade.

I knew the parade was at 8. I thought Christina may like it, but was concerned about the time. That is the princess' getting ready for bed time. As the day wound down I opted not to go to the parade. Feeling bad about this I figured it would be better if I asked Christina if she wanted to go. Knowing it had been a full day, Christina was in her wind down stage, she loves her bath time and bedtime routine my guess was Christina would agree the parade could be skipped. I was wrong. I set the yes/no switches and asked Christina if she wanted to go to the Truck Light Parade. Christina reached for the yes hitting no on the way. She then proceeded to hit yes many time. I moved the switch, adjusted her so she was sitting more upright and put the switch back on her lap. I asked again and she looked at me and hit yes, yes, yes. We went to the Truck Light Parade.

Christina and John


Christina checking out a big truck

Where to start on what has been going on... Let's start with what's in my head up front and center.

Christina had her wheelchair fitting yesterday. It went well, but it was and is emotionally draining. Let's start with the good stuff. The chair is pink with black padding. The side prompts will hold Christina from her side to side shifting. The chest prompt is neoprene with an elastic band attached which should give the comfort of the neoprene and still have the strength to hold Christina correctly. The lap belt goes over her hips not her waist which should hold the princess in place better as she tries to squirm around. The ankle straps seem more comfortable, but we'll know for sure looking for bruising.

The princess was well behaved throughout; although, she was not a fan and you could tell after a couple hours in the hospital she was ready to go.

We went to the Big Rig Truck Show. Christina enjoyed some of the odd stuff we did. We walked under/in one of the big plows and had fun waling over the foot bridge. Christina wanted to check out the Truck Light Parade that night. As she was watching the trucks go by I was watching her track the lights. Good job Christina. And when they blew their horns Christina giggled on the loud ones.

Christina helped with my first attempt at zucchini bread. After we were done mixing everything and I was greasing the pans Christina asked for a taste. I didn't want to tell her no, but I didn't think it would taste good. So I told her I wasn't sure what it would taste like and she could try it if she wanted. She wanted.
This is taste number four.

Saturday was a busy day. Christina and I participated in the UCP Short Walk. Christina raised a little money for a good cause and of course she enjoyed the walk in the park despite the weather. Afterwards we enjoyed breakfast in the tent.

Christina and I would like to thank those who sponsored/donated to the cause. Thank you Grandma, Bob, Tom, Dan, JJ, Steve, Pam and the others. It is very appreciated.

After a break at home we headed to the Doll & Pet Parade. Christina was cute as ever and turned heads as we walked to get in line. Christina is turning into quite the social butterfly waving to the crowd as we went by.

Getting ready with Aushleana. In line



Hurry with the picture.


Sunday was a sunny day so more outside time. Christina enjoyed walking in the gait trainer and swinging.

Yes, it has been too long since the last update.

Christina had a wheelchair evaluation at Gillette this past Thursday. It went well and we learned a little more about what is out there for options for Christina. The two popular choices being from Sunrise Medical and Invacare. Christina's current wheelchair a.k.a. Kid Kart is made by Sunrise and it is one of the worst items any of us have ever used. Obviously not designed by anyone who ever had to use it. So our choice was obvious, give Invacare a try with the Solaris. Since most medical equipment is bulky, heavy, awkward, and difficult to sum it up; I am keeping my fingers crossed. Invacare, don't let my baby down! We have a trial chair coming in a few weeks. It will be larger than the chair Christina would have, but should give us a good idea how to navigate inside and out with it.

Christina's teeth have been pretty consistent keeping her uncomfortable. I will be very glad when those molars poke through for good. I can hardly imagine how happy Christina will be.

Christina has been a fan of our adventures outside. With warmer temperatures and less wind we have made a point to go out as much as we can. It was very cute to watch Christina walk to the back door to go out on the deck. Her reaching for the door handle was all I needed to bundle us up and to the deck we went.

Christina has also been on a swinging kick. She enjoys laying belly down in the swing and using whatever limbs she can to get herself moving. With her desire to swing I started bringing various toys over so we can play with both.

We are also still waiting for Christina's Communication Device(iPad). It is ordered, but has not arrived. I am looking forward to hearing more of Christina's words.

There is more to update and I will do so as soon as possible.

It was a great weekend.

Thursday therapy was canceled so Christina and I had extra play time. Christina also made a new friend, Jen. Friday was more play and a trip to the mall. Along with the usual activities Christina enjoyed singing with several other children. I don't know if the other children notice Christina watching them. It makes me smile watching her watch the other kids when they join her in play. No one seemed to mind my being off key. Saturday the little pool was closed, but we played in the big pool for a little while. The big pool is not as warm as the little pool so we did not stay in as long. Saturday was also the Wissota Winter Classic. We went, but did not stay long. Most of the activities are not geared for the younger crowd. And Christina was on the tired side.



Sunday was lots of fun for everyone. We all played outside and went for a walk. Christina enjoyed walking in the snow in our snow fort. And again I can't express well enough how wonderful Christina does in the gait trainer outside. It is not as easy with her boots on, but she gives it her best. Christina walked up and down the deck so many times she deserved a big shoulder ride.



On another note:
Christina has her surgery creeping up on us fast. It is very noticeable the Botox is wearing off. And the Phenol Blocks are not far behind.

Parent teacher conferences are coming up also. It is always enjoyable to hear how well Christina does in school. The conference also gives us the chance to learn other items to work on with Christina.

Happy Valentine's Day everyone.

Thank you to all who took part in Starfest 2011 and to all who donated.

Christina was her happy self for most of the day on Saturday. Towards the end of the telethon Christina had enough and she told us. Unfortunately she did not want to take part with the other children gathered around while Warren sang "Thank God For the Children".

Sunday we made up for lost play time. Christina was in a super good mood and thought it would be fun to pick on dad. Everything I suggested we play, Christina did not want to do. Then half an hour or so later she would walk over to whatever I suggested earlier and wanted to play. Anything from reading, cooking, gait trainer, etc. the princess only wanted to play if it was her idea.

Christina did agree with me when we went outside. Christina looks very cute all bundled up.

The United Cerebral Palsy Telethon is Saturday January 29th. Show your support and call in with your donation.

UCP-WCW has been very helpful in many ways. Thank you to all who volunteer and donate.

Happy Thanksgiving

Christina was lots of help making our Thanksgiving dinner. Christina was up early and took a long nap after a big lunch.

Christina was also talkative giving lots of holiday wishes.

Angela dressed Christina in a pretty dress and her hair was done up to match.

Helping cook


Looking pretty