All Blog Entries - Pray For Brandon

Why do things have to be so hard

Good Afternoon everyone,
Have you ever had one of those months, days, years whatever you want to call it that you think MY GOSH CAN IT GET ANY WORSE!!!! Well I have been having one of those months for sure. Of course you all have read about Brandon and his feeding tube surgery that is coming on Monday the 1st @ 12:05pm. That is the least of my worries and that sound so small of me but I know this is going to have a good ending regardless. This surgery is going to be the best thing for Brandon he will grow, eat, feel and look better when all of this is done.

No like I said that is not my biggest worry anymore, Now we have several more to worry about. If you do not live in my hometown than you would not know about the place my husband works at might be shutting down. Yes he works for Pilgrims Pride chicken Inc. He has worked there for 3 years now and it pays very good for our small town. Well they have till Monday Dec 1st to tell them wheter or not they have a job. I hate that one thing because he will lose his job, also he will be with me at Brandons surgery so how is he suppose to know anything.
I mean yes he could draw unemployment but staying home is not his cup of tea for more than a week. It would be lots of help to me but then again we might fight. I know if he loses his job I will have to go to work for awhile till he finds something. I hate doing that but it is what I have to do than I will do it.
That is one of my worries Now this one I am about to tell you please dont be alarmed and dont call me asking me 20 questions because I dont know more than what I am writting to you and wont for a month or so, but.......I have to have a breast biopsy when I get back from Little Rock.
I felt some knots in my breast had them checked out and they could not get any fluid so they made me a mammogram appt. Well the test showed something abnormal but they are not sure what it is or anything. They said to just talk with my Dr and see what needs to be done. I am sure that everything will be ok I am more concerned about Brandon right now than anything. If you want to email me you can @ pollard0808@yahoo.com just so you know a way to talk to me,.

Just keep us in your prayers and think about us.

On a happy note we had 32 people at my father-in-laws for Thanksgiving dinner and it was wonderful and we loved seeing everyone. Everyone loved on Brandon and told him they love him and that everything was going to be ok for him. I hope that everyone does this every year it was great.

Brandon is doing great except that he has whined the last couple days non stop I think its because he is out of his routine and he hates to be out of his routine. Well now that I have all of you scared and worried I guess I will go but just remember GOD only gives us what he knows we can handle. I love you all and thank you for everything. I will update soon on my drama after next week.
Amber

November 28, 2008 Posted by amber | Untagged | Comment (0)

Feeding Tube time

Ok so we are getting a feeding tube on Dec 1st we will be in ACH ( arkansas Childrens Hosptial). We went to get tested for the reflux and they said that he was not reflluxing maybe 2xs but not bad but because his stomach was going to be growing because of the tube they wanted to go ahead and do the nissen thing where they take his stomach and wrap it around his espoughus ( however you spell it) just so they dont have to open him up later and do it again. I was fine with that because I dont want him to have more than one surgery.
So this is how it will go I will call them on the 28th and see what time his surgery is and then I will post again. But so far he is having a hearing test done, pressure check and maybe a catract removal on his eye, and a feeding tube and nissien instered, He will be in there for 3-4 days at the most. They said depending on how well he does. Yes I am scared and nervous I have never dealt with anythng so hard to do for him . I knew he had to have his shunt to survive but i did not think a feeding tube would mean the same thing.
I hope it all works out for the better for him. He is a strong child and I love him and I hope that you all pray for him.

There is another child I would like for you to pray for her name is Maggie Jo Tadlock she is 6mths old and a cutie pie. She is set to have a open heart transplant. She is 1st on the list and pray that they find one soon for her. She is doing good but she needs extra prayers that she gets the heart she needs and recovers fast.
Thank you for all the thoughts and prayers and sorry there is no pitcures we have not camera right now it broke.
Lots of love,
Amber

November 12, 2008 Posted by amber | Untagged | Comment (0)

Halloween and Misc

Well Halloween was fun we went trick and treating in the downtown area with a couple of my friends and then went home and went around town. Brandon seemed to like it but the coustume he had was very hot and he got mad a couple of times until I took it off of him. The kids made out like bandits and we had to hide the candy so they would stay out of it. So they only get a little at a time. Besides we dont eat that much candy so they arent use to it. Sorry there is not more pics we just did not have all our stuff together and I forgot my camera when we uptown. I am glad that holiday is over and now we move on to Thanksgiving and Christmas its all ways something isnt it lol.
Brandon is doing good he goes Thursday for his test to see if he has reflux and then to the GI clinic to talk about the gtube. Then we will go to get his teeth cleaned and go home. Then I have an appt to give blood for my kids school so I wil have a really busy day. I hope all is well with everyone and I will try getting more pics of the lil guy up soon.
Everyone have a good week!

November 4, 2008 Posted by amber | Untagged | Comment (0)

Wheelchair and Communication

Well we have had a busy last few days we have found that we are going to get a wheelchair and we know that he will be able to communicate in some form or fashion.

This is the wheelchair style Brandon will be getting

It has tilt and space movement as you can see

This is the wheelchair he will be getting candy blue with his name engraved in the back.
I know that it looks rather plain but he will be getting all the effects that will be suited for him and make him more comfy.
So far this is what we have come up with for him to have added to his chair

HEAD SUPPORT
X STYLE CHEST SUPPORT
LATERAL SUPPORTS
CIRCULAR ARM REST
SMALL PADDED SEAT BELT
CALF STRAP
FOOT LOCK ON THE BACK OF CHAIR
ADUJUSTABLE ANGLE HANDLE
MEMORY FOAM PADDING FOR SEATING
CLEAN TRAY
6X1.5IN SMALL FRONT TIRES
12 IN NUMATIC MAG AIR IN TIRES ON BACK FOR SMOOTHER RIDE
TRANSIT OPTIONAL FOR VAN OR BUS
REAR ANTI TIPPER
ALL ALUMIMUM FRAME
TILT AND SPACE

ADDUCTURE BETWEEN KNEES

Now for the communication devices part:

\

this durable, flexible, portable unit can be used with almost any electric toy or appliance. Features 2 double outlets for turn taking, sequencing, and choice making. Once outlet is activated, the other will not function until the first is turned “off” or completes its timed cycle. Includes 2 switch jacks for corded switch activation. Plus, on/off indicator light lets you know when the unit is plugged in. Four operation modes allow the action to be programmed to suit the needs of the user, teacher, or therapist: (1) “Direct” keeps the appliance “on” only while the switch is activated; (2) “Timed Seconds” allows the appliance to run for a set amount of time from 1-60 seconds; (3) “Timed Minutes” lets the appliance run for a set amount of time from 1-60 minutes; and in (4) “Latch” mode, one activation of the switch turns the appliance “on” and the second turns it “off”. Meets UL- and CSA-standards.

This the communication switch we are trying to get for Brandon it seems to be the best so far for him. Now if I can come up with the 300 +tax to get it will be the best thing for him.
Here are some other things they said might be good for him to be able to help him

Radio with cassette that he can control by the power link

Versatile 4-level communicator offers single, sequential (great for storytelling), and random (great for playing games) message capabilities! Record up to 75 seconds of message time per level for a total of 300 seconds. Easy-to-target plate. Can also be activated by an external switch and to activate other adapted devices. Requires 4 “AA” batteries (not included). SIZE: 7" x 4 1/2". SPECIFY: Red, Blue, Yellow, Green, or Purple.

something similar to this but they said we can get the lights at WalMart and plug them into the powelink .
They also said that he was more able to use his head to hit the switches than anything and that he responed well with that. He loved the lights they told him to turn them off and on and he did as told. He is really smart they say an I am glad to see someone else sees his potitenal as well.

Well that is all I have for now we will be doing halloween tomorrow so get to looking for pics of that.
Amber

October 29, 2008 Posted by amber | Untagged | Comment (0)

Insight on life

I walked into my moms the other day and she told me about a show she had watched on Strokes and thought it would be something I would like to read or hear about being that Brandon had a stroke in the utreus that caused his brain damage. So today I looked up some information on this and found teh 40 steps to helping recover form a storke very intresting.
No they are not all for Brandon but alot of them are for him in so many ways.
On the oprah show this DR talked about how she felt inside her body when she was recoverying. It was amazing to listen to her and see that she was truly helping other understand disabled people. She said " Hello I am in there I just cant get out" That is how I have felt Brandon has been all this time. I know he knows I am there.....just his body cant make the right nureons fire to make me aware of this.

I have been doing alot of soul searching to help me find the right choices for him... as for what kind of equipment, clothes, foods, even how to cut his hair to help better his life. I see now that yes it is important to think of these things but dont dwell on them. I know he will do what he wants when his body is ready...he will communicate with me just like he does now. He knows if he crys a certain way when his feet get hung in the crib I will come running ( he likes to turn sideways lol) He knows that when I see him stick his tongue out like he is tasteing something that he is hungry and wants something. He can tell me when he is awake, when he is happy, when he is hurting, or when he just wants some loving. Sometimes its hard for me to recongize all the diffrent things so when I do it wrong he lets me know. So in my mind Brandon is there he is alive in his body menatally as well as health wise. By that I mean he has a mind of his own, which can be translated with some help.
We are receving all the therpays we can get as of now and if I can not do what I need for him I will just try my best to enjoy with him what he can have. As far as life Brandon is great and he is my great escape from reality. When he is on the floor while I am cooking and is crying I get done sit down with him just the touch of me close he calms down. Just to know that I make him happy and safe makes me happy and safe. I can not ask for something more peaceful than that.

So the next time you are around someone who is disabled just think about what life is for them when all they have is inner peace they know nothing else. It will make you enjoy all the greater things in life like the smell of a flower, the taste of your favorite food, or even that touch from someone special that makes you feel safe. They might look like they are unhappy or struggling but they are not. Just remember they are in there they just cant get out! Also being disabled is not a downfall they arent disabled they are just diffrent. Whos is not to say we arent the disabled ones right.

http://www.truveo.com/Oprah39s-Soul-Series-Jill-Bolte-Taylor/id/3504896606

Recommendations for Recovery: Forty Things I Need Most

By Jill Bolte Taylor

1. I am not stupid, I am wounded. Please respect me.

2. Come close, speak slowly, and enunciate clearly.

3. Repeat yourself—assume I know nothing and start from the beginning, over and over.

4. Be as patient with me the 20th time you teach me something, as you were the first.

5. Approach me with an open heart and slow your energy down. Take your time.

6. Be aware of what your body language and facial expressions are communicating to me.

7. Make eye contact with me. I am in here—come find me. Encourage me.

8. Please don't raise your voice—I'm not deaf, I'm wounded.

9. Touch me appropriately and connect with me.

10. Honor the healing power of sleep.

11. Protect my energy. No talk radio, TV, or nervous visitors! Keep visitation brief (five minutes).

12. Stimulate my brain when I have any energy to learn something new, but know that a small amount may wear me out quickly.

13. Use age-appropriate (toddler) educational toys and books to teach me.

14. Introduce me to the world kinesthetically. Let me feel everything. (I am an infant again.)

15. Teach me with monkey-see, monkey-do behavior.

16. Trust that I am trying—just not with your skill level or on your schedule.

17. Ask me multiple-choice questions. Avoid Yes/No questions.

18. Ask me questions with specific answers. Allow me time to hunt for an answer.

19. Do not assess my cognitive ability by how fast I can think.

20. Handle me gently, as you would handle a newborn.

21. Speak to me directly, not about me to others.

22. Cheer me on. Expect me to recover completely, even if it takes twenty years!

23. Trust that my brain can always continue to learn.

24. Break all actions down into smaller steps of action.

25. Look for what obstacles prevent me from succeeding on a task.

26. Clarify for me what the next level or step is so I know what I am working toward.

27. Remember that I have to be proficient at one level of function before I can move on to the next level.

28. Celebrate all of my little successes. They inspire me.

29. Please don't finish my sentences for me or fill in words I can't find. I need to work my brain.

30. If I can't find an old file, make it a point to create a new one.

31. I may want you to think I understand more than I really do.

32. Focus on what I can do rather than bemoan what I cannot do.

33. Introduce me to my old life. Don't assume that because I cannot play like I used to play that I won't continue to enjoy music or an instrument, etc.

34. Remember that in the absence of some functions, I have gained other abilities.

35. Keep me familiar with my family, friends, and loving support. Build a collage wall of cards and photos that I can see. Label them so I can review them.

36. Call in the troops! Create a healing team for me. Send word out to everyone so they can send me love. Keep them abreast of my condition and ask them to do specific things to support me—like visualize me being able to swallow with ease or rocking my body up into a sitting position.

37. Love me for who I am today. Don't hold me to being the person I was before. I have a different brain now.

38. Be protective of me but do not stand in the way of my progress.

39. Show me old video footage of me doing things to remind me about how I spoke, walked, and gestured.

40. Remember that my medications probably make me feel tired, as well as mask my ability to know what it feels like to be me.

October 23, 2008 Posted by amber | Untagged | Comment (1)

Feeding Tube Blues

Feedin Tube Blues

Good Morning all,
Well it has come down to the fact that we have no choice but to get a feedin tube for Brandon. As you can see from the growth chart inclosed he has been straightlined for awhile and they say it is not good. You only have a certain amount of a window that you can have that will allow you to grow right. Well his window is almost closed so here we go.

Frist things Frist we have to have some reflux test done and see if he has any reflux if he dosent than he can go with out that fundo thing that keeps them from refluxing. Then he will probaly have the surgery on Dec 1st when he is scheduled to have eye test and maybe a removal, and a hearing test. I hope that all of this will be worth it because I am really bummed about the whole thing. I feel like a worthless failure at times. Then I think Heck I have tried everything possible to help him. His Dr has made it very clear it is not my fault but I do have the choice to either exand his life longer or lessen his life. So we are down to no choice because he is my son and I will not lose him without a fight.

Reminds me of a nursery rhyme
There was an ol lady who lived in a shoe
had so many kids she didnt know what to do

lol I feel like redesignin it to say
there was an ol lady who lived in a shoe
she had a disabled child who she loved so much
but when it came to choices for him she did not know what to do
She had 3 other kids who acted like brats and all she wanted to do
is hide in her closet to get away from life.

Idont know what to do sometimes when it comes to such hard life choices but I do know that I love him and want to help him live a full life. This might be the best thing that ever happend to him but why him. Why does he have to go through so much at such a young age.

So that is what is going on right now with him. So everyone keep him in your prayers!

October 15, 2008 Posted by amber | Untagged | Comment (0)

Lances B-day

Lances B-day party
Well my son Lance turned 4 on the 11th we had a great b-day party for him and he had a blast. There is also a video of Jordan and him sliding

October 14, 2008 Posted by amber | Untagged | Comment (0)

Spending time with Brandon

Just time with him

Yester day I went to his school to see him for vision therpay and we had our times mixed up so I was a hr early.

So I just thought I would spend the hr with Brandon instead of coming back. When I got there he was by himself in his quite area ( he was fussy and it clams him to be by himself) I went over to him did not say anything but he knew I was there because he started wiggling, and trying to act bad lol. I picked him up and did what they call circle time. I sat him in my lap and got to sing, read, learn sign, and talk about our shapes,colors, and letters. It was cute because they treat him just like the other non disabled children. He had his own shapes and stuff he uses and then we got up from there and it was close to lunch. He was sleepy because I didnt let him take his morning nap lol. So he ended up falling asleep on me. The other kids are great and so are his teachers they are the most loving people. Some of his classmates come up to me and reach for him and kiss him and tell them they love him. He would smile most of the time the other he was asleep and just grawled like a bear lol. He loves his sleep, then we went to lunch and he sleep lol so when lunch was over and nap time for everyone else he wanted to wake up. So I took him out the lunch area and fed him so he coulld eat before he saw Mrs. Shelli. By the time he ate and everything she was ready for him.

He was fussier than usual, I think he just thought he was going home and he was wrong lol. But he did good and she worked on eye movement , texature, new ideas, in and out movement and read to him with some braill books.Then We were done so I left and he knew I was gone and he was a little fussy, but he is fine now. Having someone like Shelli is great as or alot of them that see him. But Mrs Shelli has a special place with us she has helped me and been there for me through it all. I had another person like her but she had to leave us and we miss her dearly. She might not have been a Dr,therpastist, or nurse, but she was one my dearest contact for him. I hope we dont lose any more thats for sure.

You never relize how much a child with brain problems could be so smart but he is. He knows when you are around, when you cook, when you laugh he laughs, when you cry he gets upset. Its amazing what the human body can do to make up for the parts that arent working right. I am thankful for that but I wish once again there was more I could do for him,but in the small town we live in this is the best we can do.

I have been getting daily reports from his teachers and I thought that I would add a link to his blog for anyone who would like to look could. It will take me a day or to but be looking for them.

I will add pics for all tonight also. so be ready got a few new ones to share. Hope all of you have a great weekend

October 2, 2008 Posted by amber | Untagged | Comment (0)

Brandons 1st horse ride and Friends

Good times with family and friends

September 28, 2008 Posted by amber | Untagged | Comment (0)

Brandon and Family

Brandon growing up


	    			
							
				    
	    	September 18, 2008
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