Wednesday, March 28, 2007

Connections

After our first trip to Arizona for Hyperbaric Oxygen Therapy we learned about sensory learning. We were very excited that there was a treatment out there to help reconnect all of my senses. I could see and hear but I didn't understand any of it. I would jump when I heard loud noises but never looked towards them. I could see but I didn't follow anything with my eyes at all!

So the second time we made the trip to Arizona we also did Sensory Learning at SIRRI in Tempe, AZ. It was crazy! We had to get up and drive to HBOT and then all the way across town to SIRRI. Then mommy would stop and get some lunch so that we could go back to the other side of town for more HBOT. Then it was back to SIRRI for one more session. In there somewhere mommy also managed to get me PT and OT at a clinic in Pheniox!

During Sensory learning I started looking at things with my eyes! My mommy was so excited when I followed a toy all the way from one side to the other! She also said she noticed that I was starting to look at people when they would walk into the room! HUGE!!!

Since then I have done Sensory learning 2 more times and each time I have gained more sensory awareness! I am processing things a whole lot faster! I am truely and miracle!!!



SIRRI of Arizona

"Brains are more alike than they are different. Everyone has Emergent Faculties, and they are the common denominator among diverse populations such as those shown in Figure 3. It is this common element that enables the Sensory Learning Program to be highly effective even across diverse populations. When the brainstem area becomes better organized, higher cortical activities such as math, reading, written and oral expressive language, receptive language and general spatial/temporal orientation are more easily learned and refined. They depend on a good foundation of neurosensory faculties in the brainstem area. The Sensory Learning Program simultaneously re-educates the individual's primary sensory functions and retrains their Emergent Faculties. When these faculties are integrated, sensory functioning is effortless and integrated, the individual is highly adaptive, body movements are well coordinated, learning is easy and appropriate behavioral responses are natural outcomes."

Give Me A Little O2



Ten days after I was discharged from the hospital my mommy and I went to Arizona for Hyperbaric Oxygen Therapy. We took two trips for three and a half weeks with a month in between trips. We stayed at the Ronald McDonald House during both of our trips to Arizona for HBOT.

Monday- Saturday we went to the clinic 2 times a day for about an hour and a half. When we got there mommy helped Ms. Lori put on my hood. It made me look like a beach ball! I hated it! We then got into the chamber and sat in a chair. There was enough room for six people in the chamber. The oxygen was hooked up to my hood through a tube and we were ready to go! With everyone seated inside the door was shut and the chamber would start to be pressurized. It was very loud! My ears would start to pop and after about 8 minutes it was done. We would stay in the chamber for an hour. After sixty minutes at pressure we would depressurize, our ears would pop again and the door would open. There was a TV in the chamber to keep us entertained but at that time I didn't seem to care! In all I spent 80 hours in the chamber and all but one or two I spent screaming!



This is a picture of the Chamber we used at HBOT of Arizona

During my HBOT treatment I began to heal! I started to track with my eyes and hold my head up better. I started to have times when I was calm and not crying. My mommy says that she was so excited when I began to move my head from side to side and look for noises in the room! I also started to start to notice when my mommy would leave the room.




We saw so many improvements from this therapy we decided to get our own chamber so we could do HBOT at home!

Bellow is a bit more information on HBOT.


HBOT of Arizona

"Hyperbaric Oxygen Therapy delivers 100% oxygen at a pressure greater than sea level atmospheric pressure while the patient is enclosed within a certified pressurized chamber. The patient breathes 100% oxygen while covered under a hood, or while wearing a mask.

When red blood cells deliver only a limited supply of oxygen to tissue cells, negative physiological changes occur. Injuries, infections and diseases can cause a drop in tissue oxygen level to almost zero. World wide research confirms that breathing 100% oxygen under pressure forces the oxygen to reach those tissues and body systems affected by injury, infection, or disease and accelerates the body's healing process. Statistics from Hyperbaric Oxygenation demonstrate tremendous improvements in hundreds of conditions such as slow healing wounds, migraines, brain injuries, chronic fatigue, spider bites, and even Cerebral Palsy."


Benefits of Hyperbaric Oxygen Therapy:

  • Increases neuronal energy metabolism in the brain
  • Can create sustained cognitive improvement
  • Wakes up sleeping (idling) brain cells that are metabolizing enough to stay alive but are not actively "firing"
  • Enhances the body's ability to fight bacterial and viral infections
  • Deactivates toxins and poisons (e.g. side effects from some chemotherapy, spider bites, air pollution, etc.)
  • Enhances wound healing by stimulating the growth of new capillaries into the injured area
  • Creates an immediate aerobic state
  • Removes free radicals
  • Reduces tissue swelling
  • Acts as an anti-inflammatory

Fun With All of My Friends


I go to preschool for two and a half hours four days a week. I love school! I am in a normal classroom with kids my age. I get to sing and dance in circle time! I play in the sensory table with sand, water, ice, and other funny feeling things! I get to paint, play with play dough, and read books! When it is nice outside I go to the playground to swing and slide! I have a lot of people at school to help me! I have a PT, OT, and Speech therapist. I also have a class room teacher, a special education teacher, and an aid. At school they have lots of toys that I can play with by myself by pushing a switch! They have balls, bolsters, and therapy swings too.


Before I started going to school my mommy had to sit down with all of my teachers and the school district to write an Individual Education Plan or an IEP. All of my therapists came along to explain my needs so that I would get the right services. This took a long time and has to be re-evaluated often as my needs continue to change!

It was very hard for my mommy to send me to school but it has been a nice break for her! She gets to run errands and do things around the house without any interruptions. Some times she even gets to have lunch with her friends. She is amazed how much can be done in two hours!

My Special Toys

This link is under construction. Please come back and check it out later!

All My Senses Working Together

This link is under construction. Please come back and check it out later!

Support

This Link is still under construction. Please come back and check it out later!

We Play So Hard Together!


Here is a picture of three of my therapists with us in CA on the beach!



My mommy has worked very hard to get me lots of therapy! I have Physical Therapy (PT) five times a week, Occupational Therapy (OT) 4 times a week, and Feeding Therapy two times a month. I have not had Speech in a while but I am going to start getting it a gain soon. All but two of these therapies happen at my house. Mommy set up a therapy room at our house with all of the therapy tools needed to have therapy in my most comfortable enviornment...my home!




I have three PT's that love me very much! We love to play on the ball. On the ball I learn how to put my head in the middle and hold it there while bouncing. Also how to push up to sit, and it helps stretch my body so I am not so flexed! We also play a lot on the bolster. This helps me keep my legs apart in sitting and builds strength in my trunk, arms, and shoulders when I push against it. My wall ladder allows me to hold on and stand up. I can also practice sit to stand. We also do a ton of stretching to keep my body moving and working.




My OT (who also loves me to the moon and back) works on my arms and hands! We play puzzles together and practice picking up the pieces! She gets to teach me how to hold onto and let go of toys and move my arms more freely. She is very good at streching my hands, arms, and shoulders. We also play on the ball and bolster. Sometimes mt PT and OT come at the same time so that they can work together with me.



In Feeding Therapy we work on eating. We use lots of tools to desensitize my mouth because I don't really like to have food in my mouth. I can swallow and protect my airway. I took a test at the hospital to make sure I wasn't getting food in my lungs and I passed! So I can eat small bits of food. I am working on learning how to chew and move my tongue. I do a great job but can not eat enough through my mouth to grow.

Monday, March 26, 2007

Donate

"Your Father knows the things you have need of before you ask Him." (Matthew 6:8, NKJV)

Makenzie is such a blessing to our family and all those around her! We are so thankful for all of the love and support we have received from our family, friends, and even complete strangers! Please consider helping us provide Makenzie therapy and treatments that are not covered by insurance and be a part of giving her the best quality of life possible!

If you feel led to give you can donate by


Debit/Credit by clicking the link below:





NeuroSuit Therapy





www.napacenter.org



The NeuroSuit worn over prolonged time during physical therapy can help correct proprioception and accelerate progress, such that in physical movement the skills practiced will become more fluent and require less effort. In the Intensive Suit Therapy Program, individuals often make the same or more progress in just 3 weeks of Intensive Therapy that they would in an entire 12 months of traditional therapy. With the highly skilled therapists on staff at NAPA Center combined with the tools of the IMOT program, many children achieve rapid results in a short burst of time.






Last summer my mom three of my therapists and I traveled to Los Angeles to the Napa Center. We spent 3 days there training on how to use the NeuroSuit. When we got there we were all amazed at how skilled the therapists there where! I wanted so bad to stay and do the 3 week sesion but I knew that my brothers would miss me and mommy so we got all of the information we needed and came home! I have been using the NeuroSuit at home with my therapists and it helps me soooo much! I can do so much with it on and it makes it easier for me to do the same things with it off! It has helped my whole body to become stronger! This Fall my mommy and I will be going back to the Napa Center for a 3 week intensive model therapy session and listening therapy! We are so excited!

Look At Me Stand and Walk

All of these help me stand! Standing is very important because I need to bear weight into my feet, legs, and hips to keep them all working! I love to be upright and moving! Most of the time my legs don't move but I try very hard!

This is the Hart Walker- This walker lets me stand right next to my toys and play with my arms free. I love to stand and watch my brothers play! I also love to take it for rides down the driveway!




This is the Pony- This was my first walker. I have used this mostly to stand! I love to stand and watch TV and play with my toys! It has helped me gain strength in my neck and my legs!





This is the Pacer- I really don't like this one at all! The seat gives me red marks on my legs and I really don't like holding on to the handles!





This is My Mae Walker. This doesn't offer any support. I love to hold onto this walker and work on my trunk strengh. My hips also get practice with staying in the middle.





This is my Rabbit Stander. I stand in this and watch cartoons a lot! I also love it when my brothers push me around the house in it! This is not my favorite thing to be in but my mommy says that I have to be upright so that my body gets used to the feeling! One day I will walk and it will be worth all of the tears!

I Have Lots Of Chairs!




This is my activity chair! I use it to do a lot of things! It has 2 bases that the seat can go on. One is like a stroller and can bring me all over the place! We go to the park, to boondocks, we have walked on the beaches of Florida and California with this chair! Mommy takes me shopping to Sam's and Target and she tells me that it is a back saver! I also like to sit in it at my table and play puzzles and knock over blocks! When I sit in this chair for playtime it helps to give me the support I need to work on using my arms and holding my head up!







This is my Corner Chair. It is another way to get me upright. It is less supportive then my activity chair so it allows me to work on my trunk strength and putting my head up and in the middle














This is my cube chair. This chair is very challenging for me! It offers very little support but I love to try!

This Is How I Eat






Here is my Mic-Key GJ Button. When I was in the hospital the doctors put this is my stomach so that I could eat. The balloon in the middle keeps the GJ Button in my stomach. The long tube at the end goes through my stomach and into my intestines. This way there is no food in my stomach to throw up! I don't really like to have food in my mouth and I don't eat enough orally so this helps me grow and stay healthy. My mommy puts a special extention in the button that fits onto my feeding pump so my food can go in. This button has to be replaced every 3 months at the hospital with an x-ray machine so they can make sure that the long tube is in the right place.





This is my feeding pump.It gives me my formula slowly over a period of time. I eat a couple of hours a day but most of my food is given to me at night while I sleep.












Here is a video of the difference between a G tube and a GJ tube. In this video I have changed out Makenzie GJ tube which bypasses her stomach and goes straight into her intestines for a Gtube that goes straight into her stomach. For me this is no big deal but is a medical procedure so there is your WARNING! LOL


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