still working!

The video is of Christian practicing to keep himself up while sitting.

i wanna hold your hand

Monday went ok. Christian seemed to not be himself. And later that night he woke up every 2 hrs due to being congested so he's a little sick nothing bad but we took tues off to let him rest. He was pretty blah on tues. But today he did really well with what we worked on.

new walker
Today we worked more in the walker you will see on the video. I like this one because it keeps his body in ailignment and he just walks more correclty in it. He's still slow but that's ok he's getting more used to it.

Today I had one of those moments where I thought wow this is new -never done this. As Christian walked in this walker I held his hand. It's just something that I've never experienced-Christian being upright, moving, and holding his hand. It was a delightful treat for me and he seemed to enjoy it. Enjoy walking hand in hand with your child! This wasn't one of the best video's but I didn't catch him on camera the other times today when he was walking.

happy mother's day

" I"m working hard Miss Brandy"


During this week Brandy was really trying to see what Christian needs the most work on. She will be focusing on stretching out his inner thigh muscles and getting him to really use both legs at different times when walking. Hard to explain but he will be doing a lot of walking, standing, and sitting while propping or pushing up with his arms. The idea is to get him doing more by himself or with less assistance.





HAPPY MOTHER'S DAY


I always thought I'd be a mother one day. You know change diapers, run in the park, tell your child no. . . all the typical mother things. I never thought I would be the mom of a child with special needs. I don't think anyone ever anticipates that your child will be anything but healthy and typical development. I must admit that at times it is extremely challenging and sad. But I can honestly say that those times are very few. I am more overwhelmed and thankful for the smile that Christian has all day and his ability to work harder than I (as an adult) could ever imagine. Like I always say it's just a different way of parenting. Thank you Christian for making me a mom!!! I luv you for all times!

Intense PT program at Sikeston 2010-week1

We are back for our second round of intense physical therapy at the Kenny Rogers Child Center in Sikeston. First I would like to say thank you to those who have contributed financially to Christian's therapy programs like this. We appreciate all you make possible for him!

This week Christian is just trying to get used to working on using his body correctly. He received botox injections and another type called a phenol block in muscles in his legs. Basically it helps his muscles relax, instead of staying contracted all of the time. He gets used to standing, sitting, walking incorrectly with those muscles that are pulling in the wrong places or too hard and then when they are released he kind of has to relearn to do things correctly. That's what he's doing while we are here. That's the easiest way for me to explain things. So he is not taking as many steps as he was last week but now he's learning to take them using the correct technique (or muscles). The first week is a little more difficult to watch because it kinda seems like 2 steps forward and 4 back. Everything is hard for him but i know that this is all going to help him.

The device on his legs that he has on during walking is new and he's trying to get used to it. It keeps him lined up the way he should be. It's great to spend time here with my parents and granny!

*the pics are from the Laci's Hope 5k race. My group of friends who have children with special needs turned out for this. We had lots of fun. So what if it took an hour to walk 3 miles. Also eric got 3rd in his age group. That pic is of them putting his medal on Christian.

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!