Happy Easter!!!

It has been three full days Christina has been sick. The princess is getting better and with some luck and a guiding hand from above my princess will be up to par. It is a safe assumption as of tonight that she will not go to school tomorrow.

The weekend was pretty mellow with Christina being sick. The flu Christina picked up really kicked her butt. Poor thing was in so much pain and burning up. It is incentive for me to better focus my efforts.

I began working on the project again. It had been since September if I recall since I last added to it. It is hard to focus after a couple of paragraphs. I made it as far as month one, the PVL diagnosis. I pause as I think about several things, the project, Christina's diagnosis, today, tomorrow.

Some information to share...
Live everyday to the fullest.
Enjoy everyday like tomorrow never comes.
Savor every memory.

These are not due to some religious anything. It has nothing to do with today being a religious holiday. It simply is. A child can open your eyes if you let them. And ears. Christina's diagnosis was my perk up. I am not sure how to describe the thoughts running in my head right now.

Next topic. It was nice to open the windows today. It helped to alleviate the load of all the laundry with the fresh air.

Pictures are almost done for the week also. I'm getting better at this. ;)

Enjoy the day.

Christina continues to keep us proud. Her doctor appointment went as well as expected(see other post). She does not like the pokes and prods, but the news was good. Christina is doing well and better than anyone expected when they first saw her in the hospital.

Christina has been back to her good 'ol self. Talking and walking seem non-stop.

We received a sample wheelchair to try. It is not for Christina to use, bu8t more for us to see how it works and how well it maneuvers around the house.

Last weekend Christina played outside a lot. Walking, gait trainer, stroller walks are the popular activities. Inside Christina was a HUGE fan of swinging. Using her blue chair(rehab2go chair) and teh swing stuff, Chrisitna was able to sit upright, be strapped in, swing without barriers, hold on to handles. The combo worked great. As soon as I figure out how to post video I will. The first time we tried it Christina had so much fun it brought a tear to my eye. I let her swing as long as she wanted with the occasional re-adjust to keep her sitting tall. The princess enjoyed 45 minutes.

Christina's teeth have not been bothering her lately. Good or bad, I'm not sure. They have not poked through so she will go through it again.

Although the benefits from the Phenol and Botox have been wonderful again this round, it has also shown in Christina's trunk and neck. It does not seem to slow her down at all though.

The next appointment with the developmental doctor is coming up. We only have to go once a year, yea. There will be tests that do not show how much Christina knows. It is frustrating to see. For those who need some explanation I will give it a try... Christina is not able to quickly(if at all) point, touch, grab, push, pull various items that are used during a test. Example: layout several cards with pictures and ask Christina to point or pickup one of the cards with a particular picture. Christina can see the cards, decide which card is correct, make an attempt to grab or point said card. Christina has difficulty controlling her movement so as she tries to move her arm and hand into place it can be jolty(for lack of a better word). Christina needs extra time to get her muscles to do as she wishes. And the muscles have a tough time hearing/listening to her instructions. If the card is laying flat on the table, it is very difficult for Christina to grab the card. If she tries to point her arm may stop before reaching the target card, give it time and she will get there. But Christina may push or touch other cards while reaching her goal. The tests do not take into consideration physical setbacks.

Let's end on a happier note:

Christina has been doing wonderful in school. Her communication device came and we are looking forward to see how Christina does. Christina is going to use an iPad for her device with communication software. She has used an iPad before in speech and does well.

Daddy's Log 20110404 Supplemental

Time has continued with its elusive behavior. I could use a couple more hours in the day. Whether those hours would be best spent working or sleeping has yet to be decided. I've have been fighting off a bit of a cold and it has slowed me down.

Christina and I had a good weekend. Saturday the princess was her typical cuddly self as soon as we got home. We went to see some friends at the bowling alley and the noise had Christina a little startled. She wanted up from her chair and I obliged for a little while. It wasn't long and she was smiling and talking with everyone. Christina was even happy enough for pictures.

Sunday we ventured to the mall. We played a lot and then went for our walk. After some mellow time at home she still did not nap much. It showed Sunday night shortly before bath. The energetic four year old had run out of steam. Yea daddy. With a good nights sleep Christina was ready to go about six. It worked out well getting ready for school with her getting up a little earlier.

Christina had a message for Daddy using her talker. I really enjoyed her playing it for me and wanted to share.

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.

Christina's appointment went well. The princess was not fond of getting poked and prodded, but overall all was OK.

We will be watching close to see how the Phenol and Botox take effect for possible changes in the next round of injections.

Christina has still been dealing with her swollen gums. We all will be glad when those teeth pop through.

Christina has enjoyed the warmer temperatures and loves to be outside. Licking the wind is a favorite even when bitter cold.

Christina has been very fond of swinging lately and lets me know she wants to swing including laying on her belly and getting those legs just a kicking. Christina has also wanted to slide down the steps more lately.

We have also been making desserts, Christina likes making cake, brownies, cookies. This past weekend we made an Oreo dessert and Christina tasted the mix at each step adding ingredients. When the bowl was empty Christina was very very good at licking everything clean.

Today Christina and I made brownies. They are delicious. More were to be had tonight.

Christina and I enjoyed a nice walk outside today. The princess was full of energy and very talkative. Someday I will understand all of Christina's words. She had so much to tell me today; it was beautiful.

I'm tired, not much sleep last night. Body is getting achy must have a cold or flu lingering. I sm used to second shift so the mind is somewhere between tired and what's on tv. Sleep would be the better choice.

I have seem a couple articles want to share. Perhaps another post.

Christina next round of Phenol and Botox is soon. The anxiety will be here soon enough. Not far into the future choices will need to be made concerning the next step after Botox. I am not pleased with the choices I am aware of so far.

Perhaps a walk hand in hand with Christina on a path I have yet to find will help me to see.

With all the disagreements amongst the public workers, who is the voice of those really affected the children. Is anyone worried about their pension, the one they will need an education for.

Christina was not a big fan of the pool today. There were a lot of kids today. I think she is keeping a touch of the flu at bay and she prefers more mellow. Christina was super talkative today.

Feeling productive tonight. Bread is ready for the oven tomorrow, soup thawing for lunch, chicken out for supper, all the dishes are done, and I'm updating the blog.

There is nothing better than the understanding touch of a child.

Watching the screen saver I found these two caught my attention.

The weather has been good to us lately and we have been enjoying the time outside.

Christina did wonderful in the gait trainer outside. She has much more room to use to navigate around.

It has also been amusing to watch Christina take steps in the snow. I don't know if it is the mushy snow or just because it is different Christina's steps are very purposeful. For those who do not know what I mean you would have to see it. She was a little timid when I held her on the snow bank, but once she realized what we were doing the snow bank was not long enough.

The Wissota Winter Classic was on Saturday and we went, but Christina was a little tired so we did not stay long. Her teeth were also bothersome most of the weekend and I am sure that contributed to her not wanting to stay also. Christina respite friend Aushleana joined us there.

Christina and I also talked to aunt Carmen this weekend. Christina prefers holding the phone as opposed to using the computer.