Christian is 3!

I'm finally getting some pics and video on here. Sorry just been busy with life.

Christian turned 3 on January 30th. It's hard to believe. He definitly has the big boy look and is as tall as a 4-5 year old. Eric, Christian and I celebrated with cupcakes and a little time at the local gymnastics place. Christian likes their inground trampolines! What kid wouldn't? We decided to hold off on his party until it is warm.

We also decided at this time to hold off on preschool. He would have only been there for 2 and half months so we decided to just wait. In the mean time I have been able to do more with him since we don't have first steps therapy (it ends at 3). I have been able to take him walking in his walker everyday but Sundays. Day of rest for him and mom! His walking has improved tremendously. It is soo exciting to see his first look of independence. He is taking most steps on his own and able to push the walker by himself for about 6 steps. In the video you will see me with my hand in between his legs or more on the right leg. I"m only helping turn his leg outwards. His whole body will turn to the left if i don't. But otherwise he is doing all of the work. We are up to about 30-40 mins of walking a day and then more time standing in his stander or at his table.

His eating has also grown by leaps and bounds. We only blend about 1 meal a day!!! He can eat so many more whole foods which just means less stuff to pack when we leave and more normal meals with other people or at restaurants. It's still slow eating but hey we are getting there. Maybe I will burn our magic bullet blender on the great day that we don't need it anymore.

Special Needs Moms Moment:

The past month during preschool testing there was one of those times when after pointing out how low my child is on a testing scale (not attacking the school, testing has to be done), I went in to one of those overwhelming moments of "wow! he really has a lot to overcome". Most of the time it's not pointed out how low functioning he is or where he is compared to most kids but the time's when that is pointed out it can easily get you down. The tests don't consider where he started and how much progress he has made in 3 years. I think it's one thing to just be blind or just have cerebral palsy or just be non verbal (not that any one of those alone is easy) but it's another thing to be all of those diagnosis. These moments are few and far between and I remember how far Christian has come and not how far he has to go.

Just a Suggestion:

For goodness sake's -open the door for people who have their hands full. I'm sorry but it has to be pointed out. I'm really not bitter but just thought it would give everyone a reminder to be aware of those around you. Or maybe america could install button on everydoor so I could push it and easily take my stroller thru . . and sometimes my walker that i'm dragging behind me:)

I'm just sayin. . . .

Last but not least enjoy the chips of ahoy video!

2009

2009 will be divine. that's what my husband stated last year. At the time i have to admit that I didn't know if I truly believed that statement. After all Christian was having 4-6 grand mal seizures a day. Our goal was to get him fed during the day and that was about it considering he would fall to sleep after his seizures. Thank God for a husband who has faith when sometimes I can't see past the seizures for the day.

January- we went to kansas city to try hyperbaric oxygen therapy and intense physical therapy. We saw some decrease in his seizures after this and huge improvements in his motor skills.
May-took a trip to urgent care for a seizure that didn't seem to be stopping. 2 days later his grand mal seizures stopped and have not returned to present day!
He still had his small "bouncy" seizures. We returned for 4 more weeks of hyperbaric treatment and his small seizures stopped.
June-August we experienced lots of family outings that before weren't possible or just weren't enjoyable due to the seizures. Christian also received therapy in Sikeston for a total of 3 weeks over the summer and we saw some amazing results in his strength and his left arm (the weak one).
November-Intense physical therapy in Sikeston. Again Christian gained more strength in his trunk, neck, legs. Improved walking!
December-Christian's eating/chewing has tremendously improved. He is able to eat more food without having it blended! yeah less work for me!

I'm also part of a group of moms that have special needs children. We get together once a month and just hang out and share ideas and information and just laugh!

This year has been one of the best. I look back on all of the changes that have occurred and feel extremely blessed. We continue to pray that one day he will be seizure free! Feel free to look back at jan/feb pics and videos from last year to see how far our little man has come. Thank you for being a part of this journey!

Back in K.C. for hyperbaric treatments

Hi everyone,

We are in kansas city and doing 20 dives. So we are on week 2 of our treatments. This week our friends Tara and her daughter Lilly who are also doing treatments and rooming with us. It's nice having company and an extra hand! The picture below is Christian's first lesson in sharing or should I say letting a girl get have what she wants. The both enjoy piano playing!

The video of him walking is about 3 weeks ago in springfield. We were testing out not having his hip brace on which keeps his hips in line. Sometimes he just wants to lean on it though so we took it off.

I am keeping track of his seizures to see if there is any change after the treatments. This will be good because i won't go off of memory on how many he has per day but it is a little sad to tally mark each time he has one. I'll have to admit one day I said forget it we've hit the 30 mark and i'm done counting. Although yesterday he only had about 18 so that's better than 30!

Thanks for all of your support to get Christian here for these treatments!

Merry Christmas

Hello everyone-

Since coming back from Sikeston therapy in Nov. we have been hitting the walking hard. He's really progressing in that department. His PT here has done a lot of treadmill walking with him so that he gets that repetitive walking motion.

He also got glasses. I know what your thinking-glasses? I thought he was blind? Well we can tell he doesn't track anything. The deal is that besides his brain damage that is making him not able to see he also is nearsighted in one eye and farsighted in the other. So even without the brain damage he would need glasses. We decided it was worth a try to get glasses and see if it helps him any. So far there's no major change. But he couldn't tell us even if there was so we are just going off of observation. On a not so fun note of updates-he is having more seizures. Not the big ones but still more. Please continue to pray for those to stop.

Christmas was great. Food, family, and just relaxing. Christian loved to hear the paper tearing off of his presents. We also visited Santa at Silver Dollar City. The santa was great!!! He loved the jingle bell sounds!

Video-One video is of him walking in Sikeston. I was pushing the walker but he was doing all of the leg work. The other is of me helping him walk by himself. He seems to enjoy not being strapped in to anything to walk.

last day

Today was our last day at therapy in Sikeston. 3 weeks seems to really fly by when your on an all day schedule everyday. I wanted to take this time to say thank you again to all who are involved with making these types of trips for therapy possible. I hesitate to even list the people but I will try--thanks to family, friends, strangers, dodgeball players/volunteers/donators, cookie makers, garage sale buyers, therapists, and many more who I probably am not aware of!!! You are all making a difference in Christian's life.

I hope that the words, pictures, and videos can convey the message that therapy like this (along with others) is helping Christian get stronger which in turn helps with his progression to sit, stand, walk on his own. Our goal is for him to become more independent in every area. When we come to new places like this one it is also opening the door to learn more about equipment, techniques, and ideas to take home. I have seen a huge change in Christian's strength which is allowing him to stand longer with little assistance, walk farther and more correctly (is that a phrase?), sit up taller. . . We appreciate all of the work and love that you all put in to our son!

THANK YOU -THANK YOU
The Russells

The video is of walking he did this week. Also there is a wide angle of the big room that we worked in.

Wow!

Today was a great day at therapy! I would say today and yesterday have been his best days. But of course he should be able to do more and improving the last week due to all of the work he has done up until this point.

I would say he was either standing or walking in his walker the last 2 hours. He had some small breaks but not much. And of course worked on sit to stands but that's still hard work. He did the most walking he's done in a good while. His trunk control while sitting and standing is great. He's able to stand longer with very little support from the therapist. Longer meaning 10-15 seconds maybe. I was very pleased with him today!

Videos: Christian walked in his walker (with us pushing, him stepping) to the tactile wall. He liked playing with the stuff on it today.

just my thoughts

As we've been here doing therapy I've found myself thinking in my head "man if Christian could just see he would probably be able to do so much more". Of course, we learn most of what we know by using our vision. Most of our motivation is what we can see-crawl towards the toy, walk towards mommy, see the food -pick it up , see me move my mouth to talk and copy that. . .
I usually don't get hung up on his lack of vision and the role it plays in his life but for some reason this last week it has been on my mind more. Christian does a great job of using his ears and hands to tell him different things and somewhat motivate himself. I am still amazed at what he can do and will be able to do even with lack of vision. The thing that struck me last night was that last January when we were in Kansas City doing therapy and Christian was having 5 to 7 grand mal seizures a day I said to myself "man if Christian just didn't have seizures he could do so much more". Hmmm and today Christian has been grand mal seizure free for 6 months. It's like God reminded me of what He's already done and what He will do. I'm reminded that nothing is impossible for God-not brain damage, not seizures and certainly not cortical blindness! I anticipate every tomorrow and what it holds!

videos and pics on the previous posts.