Wednesday, January 26, 2011

Understanding Cerebral Palsy

Since this is a journal for our family, I wanted to keep a short journal of Damon's conditions and might make understanding Damon a little bit easier.

Understanding Cerebral Palsy
Cerebral Palsy (CP) is a broad term that is used to describe a number of conditions in which are all chronic. Cerebral refers to the brain and Palsy refers to a condition affecting movement or posture. These are caused in the brain while still in the womb during pregnancy or early on in childhood where there is damage to one or more parts of the brain.
CP usually develops between the age of 2-3 and is a non-progressive brain disorder. About 8,000 infants and about 1500 preschoolers each year. Between 35-50% of people have seizure disorders and some level of retardation.

Below is a picture of the different types of CP and Damon has a little bit of all of these but mainly the tense muscles called tone. Normally the brain tells us what to do and when to do it.

Muscle tone refers to the amount of resistance or tension to movement in a muscle. Most people don't know what tone does for our body or have heard what it does for our body. Before I had Damon and before we knew his diagnosis, I had never heard of this word. It is what keeps our bodies in position. For example, to brush our teeth and bend our arm, we must increase our tone in our biceps on the front of our arm at the same time we are reducing tone on the biceps in the back of your arms. So all tone must be balanced to make smooth transitions ins everyday life, which in turn lead to characteristics of CP:

* Muscle Spasms
* Muscle tightness
* Involuntary movements or twitches
* Difficulty walking
* Sensory disorders
* Difficulty speaking
*Seizures





Each case of CP is different and varies from one person to the other, it is characterized in three different groups. Spastic, Athetoid, and Ataxic. (all pictured above)

A person can be affected more severe or less severe and depends on which part of the brain is affected and how much is affected. Many Dr's and physicians are involved in making the most for our kids. Dr's such ad orthopedists, who handle things such as the joints and bones, developmental pediatricians, neurologists, and therapists.


From Alise's point of View
*** From my point of view, having a child with a disability is no different then having a normal child. Yes, it is a little bit more work because of the appointments and therapies, but what else have i got to fill my time? It definitely is a life changing opportunity but I can't see my life any different. Its possible this is because I know no different. Since Damon was 2 months old, this is all I know.

I remember getting that phone call from my DR after we went in for a routine checkup at two months and realizing his head had not grown much. That was the first time I heard the word Microcephaly (another post on this) and where life began for us. After a CAT scan that showed a decrease in white matter and a still open soft spot, in which they were worried maybe he had a prematurely closed soft spot because you could not feel it. That phone call was a change. I remember so clearly living at Juan's uncles house in a bedroom in the back, and not being able to really speak to them because they didn't speak much English. But it was this day that I fell on the ground crying next to the bed and just crying because I didn't know what to say, what to think. I called Juan who didn't seem to concerned, then called me mom to look up everything she could about this so called microcephaly. All it means in small head so that didn't tell us much. She just said I'm sorry I don't think you know what to say at this moment. I also remember my dad being in some what denial I think because he kept telling me, his head doesn't look small, there isn't anything wrong with him, but I knew that things were all about to change. I often thought about it and tears would well up in my eyes until I could get my mind off of it. I never did think, why me as in what did I do to deserve this, but I always wonder why I was chosen to be his mom. Throughout this experience we have done more things that I thought I would never be able to do or ever knew about really. From CT scans, MRI's surgeries for a hernia at 2 months, therapies at an early age continued, tendon release, hip displasia, fitted for Ankle Foot Orthotics (AFO's) multiple times, going through the process of ordering equipment, figuring out different medications to help with spasticity, seizures, reflux, sleeping issues, and problems. Our world has definitely been shook and you wonder everyday if your doing all that you can to help him live a better life. No I don't and that's horrible to say. But it's real life and you just go with it.




Monday, January 24, 2011

Baby

Well I'm just about 14 weeks and still not really showing! Lets get this show on the road already! I guess I can be grateful that its not yet cause Im sure I will be huge in a couple months! Or atleast feel huge. Only 6 more weeks until we find out what were having! We cannot wait. I just hope it is in our favor and this baby decides to show its little parts! So far I still haven't really felt pregnant except for the occasional nausea if I wait to long to eat in the mornings, or the frequent bathroom breaks. Juan said on Sunday my clothes were getting a little bit more snug but not enough for people to "notice" I'm pregnant. I also haven't had that many headaches like I have in the past. I think my body knows what it's doing by now and is just going with the flow. I haven't had any real cravings for foods, but I would think chocolate because I love it, but fruitier things like starburst and gummies. Damon has a peticular smell about him. A smell of pediasure and I guess acid reflux gives you bad breath also so he makes me wanna gag when I smell him. Not a pleasurable thing I must say! Other then that, everything is going great! I have loved not throwing up this go round and looking online at room ideas for boys and girls, colors, sewing projects and the list goes on!

Tuesday, January 18, 2011

Winter Wonderland

We have been enjoying having a lot of snow lately! If it's not super cold outside we try and make some fun of going on a walk or letting the boys play in the snow. Yesterday Juan had school off so we walked down to Falls drug down the street and bought a sled and walked back and down another few blocks to a hill down by the river. So much fun!

Here's at the base of the hill. You stop soon enough you don't go in.

Damon loved sledding! You can tell by his face!

Waving down to daddy waiting for us at the bottom!


Our driveway has to get snowplowed and shoveled a couple times a week because it seems to snow all the time! This was on Sunday when the guys were out after church and Keenan needed a break from being inside.

Working hard!

All bundled and ready to go play!




This has been about a week or so ago but we went out with our friend Mandy and her little boy Ivan for a walk. This day they bought a sled!




Keenan and Ivan trying not to sink in the deep powder!

Saturday, January 15, 2011

Day 2- Meaning behind your blog name

Meaning behind your blog name
"Other things may change us but we being and end with family"
I think that this has a lot of meaning for us anyways. We have changed a lot since we have been married and definitely for the better. But it doesn't matter, we always ask each other if were making a big decision that would change something. So we start and end with family! There you have it!

Friday, January 14, 2011

A Little Bit of Everything

My mind seems to kick into overdrive as the night goes on. I guess I'm tired of talking for the day and my mind starts racing. As soon as my head hits the pillow I can only think of how things went for the day. Well it has been almost 2 weeks since we have been back in the Burg area, with no car, nothing of my own, feets of snow, cold, and two kids that are desperate to be on schedules and back to a normal life. But what do they know of a normal life? Their whole life they have been tossed and thrown and moved around into so many different situations they don't know what a "normal" is. Nor do we as parents know what a normal is. I'm having a hard time being so put at home that its stressing me out everyday. Juan is gone for most days until the late afternoon so that leaves me home with nothing to do and kids that have nothing to do. They are getting so bored that Keenan is really trying my patience. I have never seen him so destructive or so ornery that I don't know if its an age thing or if its the move and everything with that. It's hard to figure out. I can't seem to have the patience that I once had with them. And then when you think your having a good day, throw in a seizure to make the day turn out horrible!

I hate seizures. I've said it before and I will continue to say it. Seizures never did anyone good. Poor kid had a five minute seizure and then took a while to actually come completely out of it with body shakes/shivers, to falling asleep then awaken by twitches, then more crying. He can't seem to get a handle on himself after seizures and is hard to condole. I guess I have to be thankful that these are'nt everyday occurances or multiple times a day. And I know people that have to deal with this daily. I feel bad for them. I feel bad for him and myself going through them on occasion. I often think about what if I have another child with a disability. What would I do? Why would I be chosen twice for this? Then I feel bad for Keenan. The poor kid cant always hold my hand or picked up because I have Damon or can't always do things just him and I. I want it to be someday when we can have a nurse come into our home and we go and spend a day or half a day with our other kids to be "normal" kids. Take them fishing without Damon crying because he wants to get in the water, take them swimming and go down slides with them, take them to playgrounds and actually run around with them. My whole life I thought its going to be so fun to be a mom and take them all these places, do all these things. Life has different plans for you sometimes. I'm not ashamed to have a child with special needs, but sometimes its a burden. Sometimes its not easy. Sometimes life isn't always about smell the roses, but about trials we will continue to have and its just something we overcome and become stronger for.

12 weeks

So fun! We got to have another ultrasound yesterday! What a different from the wedding ring looking thing at 6 weeks to 12 weeks. Of course there should be a difference though. The little peanut was waving to us and kicking its little legs! So cute! We were both so excited to see it move and to have a fresh beginning that there is a heartbeat still! So many things can happen in the beginning so its just nice to know. We got 6 pictures of. A leg, waving, 2 profiles and some body shots. Its jsut so wierd that at 12 weeks, they have arms, legs, eyes, lips, ohh we even saw it swallow. You would think this was our first one! They are just all as exciting! I still don't know how I'm going to do it. You figure it out sometime but I really need to talk to a special needs mom that knows excatly what Im going through. Its not the same as someone that is having their 3rd kid. Well I dont know that for sure but I can imagine. But we are super excited and can't wait to find out what this little creature is going to be! Heart beat was 163

Wednesday, January 12, 2011

Day 1

A recent picture of yourself and 15 intersting facts

( Christmas morning 2010)

1. I love to be in sweats and a sweatshirt all day long if I could but love to dress up
2. I love to sew
3. Reeses, reeses, reeses... need I say more?
3. My left thumbs pops everytime i move it back and forth
4. I love to go shopping when I have money
5. I get kinda addicted to goodwill shopping
6. I stress out by the end of the night if the boys don't have naps
7. Will be broken if I find out I'm having another boy. Meaning a long time for the chance of another girl
8. I get really motivated to clean after being places that aren't clean or watching hoarders shows
9. I love crafts but have not been able to do too much lately because of all our moving and not wanting to decorate
10. I want to travel so much with Juan without kids someday.
11. I say "we shall" a little too much but its part of my vocabulary now :)
12. When I worked at the mercantile during the summers, people would ask me if I was from someone southern because they said I had an accent
13. I love to cook new foods and have menus to depend on. If I dont have a menu and know what I have in my cupboards I don't know what to cook.
14. I like doing dishes. Wierd I know
15. I get addicted to working out a little too much when I really get into it. I usually have to work out 5-6 times a week. Nowa days its a little less. Heart rate sky rockets with little intensity making it not so much fun

30 Day Challenge

30 Day Challenge
Getting to know me
Each day of the month, write a blog post according to these guidelines below
Day 1- Recent picture of you and 15 interesting facts about yuorself
Day 2- The meaning behind your blog name
Day3- A picture of you and your friends
Day4- A habit you wish you didn't have
Day5- A picture of a place you've been
Day6- Your favorite super hero and why
Day7- A picture of someone/something that has the biggest impact on you
Day8- Short term goals for this month and when you'll accomplish them
day 9- Something your proud of in the last 9 days
Day 10- Songs you listen to when your bored, happy, sad, mad, hyped
Day11- Another picture of you and your friends
Day 12- How you found out about blogger and why you have one
Day13- A letter to someone who has hurt you recently
day 14- A picture of you and your family
Day 15- Put your ipod on shuffle and the first 10 songs that play
Day 16- Another picture of yourself
Day 17- Someone you would want to switch lives with for one day and why
day 18- Plans/ Dreams/ Goals you have
Day 19- Nicknames you have and why
Day 20- Someone you see yourself marrying or spending the rest of your life with
Day 21- A picture of something that makes you happy
day 22- What makes you different from anyone else
Day 23- Something you crave for alot
day 24- A letter to your parents
Day 25- What I would find in your bag
Day 26- What do you think about your friends
Day 27- Why are you doing this 30 day challenge
Day 28- A picture of you in the last year and now- How have you changed
Day 29- In the past month what have you learned
Day 30- Your favorite song

Wednesday, January 5, 2011

Temporary Home Sweet Home

Well we have managed to make our next move. Move number 13 to be exact including all the moving around for internships but that doesn't count all the times we moved home for 7 weeks during the summers. So here we are in a sweet little town called St. Anthony about 10 miles outside of Rexburg. Wierd coming into the town because it's a whole nother town in its own that we didn't know exsisted. So kinda fun. It reminds me of those town again when driving to go snowboarding.

We are living in nour friends basement and trading rent for work around the place. It has been fun since we have been here because Keenan has a constant playmate with our little friend Ivan. He's four and they are both boys! Im not sure if Keenan knows we are living here because we don't have a door as of yet to their upstairs so he thinks we are visiting. So I have been trying to get him to know this is where we live and we stay downstairs for most parts. It's also fun having another mom to talk to during the day. I don't think I will be getting homesick this turnaround. It also helps knowing that we are here for only another 3 months! CRAZY! The end is so close in sight.

It has snowed everyday since we have been here. I forget how much snow we get. We probably have about 2 ft so far. The winter has just begun here! I can see sledding in the near future with the boys! Out to find a sled. Even if its just to pull them around in the streets.

Juan started school today and I think he is going to like his classes again. He has friends in all of them so that's a plus. He also called CI where he did his internship and they told him he can do another internship with them when he graduates so get his updated resume. So if no job is in line then I think thats what he will do. A jobs a jobs right? I have been busy getting things situated and I started sewing my quilt today. Gives me something to do during the day since we only brought one car. On a plus, Juan only has school MWF for four hours.

Boys are doing great! Damons PEG tube is great! It makes feeding so much better. Its easy to get food and meds in him without a fight and constant feeding tries. It has helped with regulating his body too. Keenan is still Keenan-short, small and still learning to talk. He's so cute though when you can figure out what he's saying. Tonight I told him it was time to turn off the tv and go to bed. He yells and me and starts crying, "Stop it, jfkskfjdsk fjkds and a bunch of mumbo jumbo. I couldnt help but laugh.

Well thats the updates on us for the moment! No resolutions for us! But it is an exciting year ahead! Graduation, Job, Baby, and house hopefully! Lots of new things for us!

Meeting Santa

Im not a huge fan of taking the kids to meet Santa and all the holiday cheer. But if he comes to church things then Im there and its free. Keenan wasn't too sure and I didnt even put Damon up there. Im pretty sure he mumbled some stuff to him but it was all about getting the sack of candy and an orange. We went to Seth and Heathers ward party since we misse ours watching thier kids. It was fun and we had some good food.




Thanksgiving

Don't know if we have ever had snow on Thanksgiving or atleast that I can remember but this year I am documenting it so I can know. We had a low key lunch with Colby and Trisha's family and then Seth and Heather came later on in the afternoon. Thats when things got kaotic. My parents home is small so any amount of people with lots of kids tends to get loud. We had the average turkey, stuffing, mashed potatoes. yummy... I made the turkey this year and also the stuffing. I brined the turkey but I think that it could have been cooked a little less, but it had a good flavor and turned out great! Not too bad for my first time doing it. Now I know I can do Thanksgiving by ourselves and not to worry! After lunch was over the boys went outside with Grandpa and got a ride on the tractor. Only in the country would you see something like this! haha!

Keenan, Noah, Elijah and Grandpa



Five Generations

While I was in Washington I was able to go with my mom and meet up with my Grandma Floyd and Great Grandma Zimmerman in Walla Walla. We spend the morning and afternoon with them. Its always nice to get a picture of all of us together and who knows how much longer we will be able to do this. My Great Grandma is 99 years old. Can you believe that! And she lives alone and people come in and check on her and meals on wheels brings her food. Its getting really hard to understand what she's saying anymore so i just nod and say yes. She laughs after almost everything she says and has the most stories to tell. She asked me if I had one too many kids there with me and we had to reassure her a couple time they were both mine.


My mom, Damon, Keenan, Grandma Floyd, Grandma Zimmerman, and Me

During our NG tube experience

Well I'm glad I can say were done with the NG tube! We are on to bigger and better things. Do you remember me saying I would never put that thing in myself? I suprised myself! It came out 4 times, 4 days in a row. I became quite the pro and getting that through his nose and down into his stomach. While we were in Seattle, we met up with a family we had met in Arizona at the convention. It was so great to meet them for reals this time and get to know their little family more. It so happened to be on Damons birthday so she had dinner for us, little ice cream cups and little cupcakes. He was treated like a royal kind. I'm going to be trying and getting a chair like this for Damon before we leave Idaho. It was amazing and worked so well!


Not too long after the NG was placed.

Sara, Ethan, Damon and me


They are such cuties lying together