Thursday, December 27, 2007

Merry Christmas


IMG_2942.jpg image by makenziesmiracle
Merry Christmas everyone! A day late but none the less Very Merry! We had a very busy Christmas holiday but it was great! Makenzie did wonderful with all of the many people and different places that we went. She spent three hours catching up on lost sleep today however! Her gut seems to be healing and has not thrown up in over a week! That is the best gift ever!!! She is doing well in therapy and we have started some new supplements that she seems to be responding well to also. Thank you so much for all of your support this holiday season. Please keep praying for Makenzie's restoration back to the beautiful little girl God blessed us with two years ago!
IMG_2945.jpg image by makenziesmiracle

Thursday, December 20, 2007

MMM.....Good

OT today was GREAT!!! Makenzie ENJOYED a Push Pop sucker! At first we couldn't decide if she even wanted anything to do with the sucker. She did! She was frustrated because she couldn't eat it fast enough. I held her in my arms and she opened her mouth time and time again! We put it on her lips first an then got it into her cheeks. Then the most wonderful thing happened.... She moved her tongue over to the side of her mouth to find the sucker!!! She found it on both sides!!!! We then moved it back to the front of her mouth and she closed her a few times around the sucker and attempted to suck on it once! This sounds like a very simple and easy task but what Makenzie did today we have been waiting to see for months. Her therapist was thrilled! It is nothing short of a MIRACLE!!! Thank You Jesus!!! She was also a happy little girl most of the day. Thanks for all of your thoughts and prayers! Keep praying for this continued gift of healing for Makenzie.

Tuesday, December 18, 2007

Quick Update

Makenzie is doing well! Christmas is quickly approching and the boys are getting very excited! Hopfully we will get some therapy next week but it will also be nice to have a little break. We went to Children's today to get fitted for new AFO's (braces to support her feet) and got a perfect mold. Hopefully they will fit her much better then the first pair that were made.


She was so happy yesterday and seems to be starting to giggle more often. she is also starting to reach out to me when I go to pick her up! She still has a long way to go in the arm department but the big improvement is that she is starting to get movement of her arms in the correct direction! Most of the time when she tries to reach out she ends up pulling her arms tighter into her body. She is starting to break out of that pattern. She is also starting to put weight on both of her hands and is pushing herself up through her shoulders! YEAH GOD!!!!


Monday, December 10, 2007

Reflux Away

I think I might get to go to bed early tonight but I wanted to quick get an update posted. Makenzie is doing great! I talked to a homeopathic doctor on Thursday and then went to a GI specialist and boy were their thoughts on totally different playing fields in regards to Makenzie's reflux! The GI doc wants to do an endoscopy. This would require putting her under and probing her digestive tract. NO GO, NO WAY! The other opinion is to take her off of the processed formula that is more or less refined sugar water and heal her gut. We choose this option! She has been on a homemade formula for about 3 days now and I would say that her reflux has improved by at least 75%!!! YEAH GOD! We will continue to try this and then at the end of the year the doctor wants to try some supplements that will focus more on her brain and the pathways from it to the rest of her body! Pray that this will make a difference and pray that God will give us the financial means to proceed! None of the biomedical treatment is covered by insurance but it has been more beneficial then pharmaceutical medicine! Makenzie is also doing very well in therapy and seems to be making many improvements every day! I have so much more to say but I need to call it a night. Thank You all for your prayers and support they have been such a wonderful blessing.

Monday, December 3, 2007

WOW


Makenzie is doing GREAT. She is getting so much personality. She has been so smiley and fun lately. I took her to Children's twice this week for therapy and they we're so amazed at her progress! We haven't been there for therapy in almost a month because of the holidays and Adams camp. She just seems so much more aware of everything and is starting to respond to questions with physical responses! We put the tree up and I stood in the hallway and said "Makenzie .... look at the Christmas tree" and with out any physical prompt she turned and looked right at it! She did the same at church today when I asked her to look at the kids that were lined up in the hallway getting ready to sing! Thank You soooo much to ALL of the kiddo's at Eastern Hills that have been praying for Makenzie! You are such a blessing to our family!

We also had a appointment this week with her rehab doctor, pediatrition,and some of her therapists this week at Children's to discuss Makenzie's care and progress. It went fine but I feel like I am chasing my tail on the feeding, calories, reflux, medication for reflux, and nissen surgery ordeal. Makenzie is still having big issues in the acid reflux department. She has been refuxing nearly every feeding and sometimes all day. It is probably very painful, can get into her lungs, and is keeping her from being able to take in enough food to gain as much weight as she needs to. The best treatment they can come up with is a surgery that would take part of the stomach and wrap it around the esophagus. This would let food go in through her mouth but not come back out. In theory it sounds wonderful but like with any surgery there are side effects. Please pray that God would make the right decision VERY clear to us so that we will have peace and Makenzie can be more comfy in her stomach without the constant spitting and puking with or without the surgery!

Thank You all for your prayers! It is late and I am scatterbrained ....Sorry! I have so much more to say but Kenzies feed it done and I can now go to bed! Thank You for loving my little girl so much and for all of the support! Keep praying!! It works!!

Thursday, November 22, 2007

Happy Thanksgiving


Today we have so much to be thankful for! Four beautiful children, a house to live in, and most importantly a loving God to give us HOPE for tomorrow! As for Makenzie, the thank you list is expansive. For starters she is alive! She doesn't have seizures. She is smiling, learning how to roll and sit, responding to her name, watching everything around her, gaining weight, moving her arms and legs purposefully, bearing weight into her arms, getting a protective response, losing tone,and protecting her airway are the big ones. Thank You, Thank You, Thank You God!

We also are so thankful for all of our friends, family, and church for being so supportive through the last nine months. Without all of you guys we wouldn't be where we are today! Thank you all so much for your prayers, donations of time, food, money and so much more! Thank You to all of the Doctors, nurses therapists, caseworkers, paramedics,and firemen who have taken such a wonderful interest in the healing of our beautiful little girl. THANK YOU ALL!!!!!

At the end of my list of blessings we have one request for prayer. Makenzie has been struggling on and off with Acid Reflux.Because of her tone she also has some motility issues in her bowels. In other words her stomach isn't emtying fast enough and then the reflux kicks in and she spits or throws up. There is medication for this but the side effects are not good. There is also surgery to prevent this but that would require anithsetic, heavy drugs , and recovery. Far from ideal! Please pray for healing in her little gut with out the need for surgery or drugs.

Please keep praying for Makenzie. She is healing very quickly but her journey to full recovery is far from over! Thank You all again for everything!

Saturday, November 17, 2007

Sitting Pretty

Adams Camp is now over. It was a great week! It was overwhelming for Makenzie the first few days because of all of the extra stimulation and new people. She did very well however the last two days and we met some very wonderful people this week. On Friday Makenzie SAT UP ALL BY HERSELF 2 times. It was so wondrful!!!! I posted the pictures of her sitting in the 2nd slde show on this site. She also seems to have gotten over her cold and is sleepng much better. She feels so much better and has been so smiley the last couple days. It is so nice to have a healthy girl again!!! Keep praying. God continues to be so faithful.

Sunday, November 11, 2007

Adams Camp

Adam's Camp is here! Tomorrow I have to get up get myself ready, get 3 kids out the door for school, feed Makenzie, do her hair, get her dressed and be to camp by 9am. This will be interesting to say the least! This is a wonderful chance for Makenzie to get intensive therapy and still be close to home. It seems like all of the really great treatments have all been so far away. Thank You again to the Gart Family for providing us with this chance to go to Adam's Camp! Please pray that God uses this as a healing experience for Makenzie and that this may also help get her on a more normal sleep schedule. Thank You all for your continued prayer and for always believing that prayer works!

Saturday, November 10, 2007

Cold Season is Here!

Saturday, November 10, 2007
This has been a LONG week! All of my kids have a cold and Makenzie also has croup and a stomach bug. She has been so tired and cranky for the last few days. Keeping food down has been a challenge but she is doing better with that today. I am very tired too from lack of sleep and it has been hard to keep up with everything while holding my sick princess. Please pray that she gets rid of these bugs and is well by Monday for the start of Adams Camp.

Thursday, November 8, 2007

Swallow Study




Makenzie has been eating food from a spoon for a few months now. She has done better at times than othesr but overall she can move her food from the front of her mouth to the back and swallow it. The big question is whether or not she is silently choking on this food. The big answer of the day is NO!!! We took her to Children's Hospital today for a swallow study. This is done in the radiology department. Makenzie sat in a chair while a x-ray machine took real time pictures of what was going on in her throat as I fed her different kinds of foods. She would only take a few bites but none of it went down the wrong tube. God is so good!!! Now with this report all of her therapists can help her learn how to eat and drink better and feel assured that is is safe for Makenzie. This is a huge deal because now we can push harder down the path to getting the g-tube removed someday!!! Oh and side note to all of that ..... she gained 2lbs!!!! Thank You all for your prayers and please keep praying for Makenzie. Please pray that she continues to gain weight and is more accepting of food in her mouth. She is doing so well keep praying!!!

Friday, November 2, 2007

Super Suppers

We just wanted to give a huge Thank You to a small group at out church,,, Phase 5 and Supper Solutions for bringing our family a bunch of meals last week! Thank You so much for the gift of time we can now spend as a family without the stress of preparing dinner. It has been a huge blessing. Thank You also for the prayers lifted up for Makenzie while preparing these meals for our family. Thank You Thank You Thank You!!!!!!

Tuesday, October 30, 2007

Giggles

Today was a great day! I was playing with Makenzie in her highchair and moving her legs in a running motion. I was singing her a song about running and a huge smile came across her face and all of the sudden she started to GIGGLE!!!! It was the most amazing sight to see. She has been so smiley lately. She has been giving tons of social smiles. I never knew how much we all take for granted the simplest things in life. She is doing so well! Thank You all for your prayers and support. Please continue to pray for healing. God is listening and answering our many prayers.

Monday, October 22, 2007

Update


Makenzie is doing great. She had PT today and was doing wonderful with rolling. She is starting to put her hand above her head by herself while rolling over. This makes it easier to hold her head up and turn it. I will try to get some video of this in her slide show soon. She is also doing really well with putting weight on her arms.Regaining the use of her arms and hands is going to be a lot of work and a long process but she has already come so far and we know she can do it!!! We had an apointment at Children's today in the Special Care Clinic. They can help to cordinate Makenzie's medical care with all of her doctors and therapists. The catch is that for them to be most effective we will have to change her current pediatritian from Pediatric Pathways to the Clinic at Children's. I am not sure what we will do because we love all of her doctors and they are always available and I don't think this clinic will be as easy to access in a crisis. Please pray that we make the right choice for our daughter. Thank You all so much for your support and concern. We feel so blessed.

Tuesday, October 16, 2007

Cold season is here!

Makenzie is doing well. She just got over a cold! She has been doing great in therapy and is also still doing well with the G-tube feeds! With her being sick we haven't been doing much orally. Too many buggers. Not to much else to report. Life is busy! Next week it should slow down a bit! Yeah! Please keep praying for Makenzie! She continues to grow and heal and we are so proud of her! Pray, Pray, Pray, Pray!!! Thank You!

Chest X-Ray


Makenzie and I took a field trip today to the radiology department at Children's Hospital. Both the pediatrician and the rehab doctor thought it would be a good idea to rule out pneumonia with a chest x-ray. We got the report back this afternoon and it read CLEAR!!! Nothing in her lungs not only means that she doesn't have pneumonia but that the food she has been eating orally is going into her stomach and not her lungs! She is protecting her airway!!!!!! We have a swallow study on Nov. 8th so we will be able to see exactly what is going on but from this x-ray it looks wonderful. THANK YOU JESUS!!!! Keep on praying for continued healing!

Monday, October 15, 2007

Update

Makenzie is doing well. She has however been running a 100.5-102.8F fever on and off for the last three days. I took her to the pediatrician today and her blood work was normal, her lungs sounded good, no strep or flu, so I guess we just sit and wait. Her rehab doctor said to give it a couple days and if she is still running a fever she wants to do a chest x-ray to rule out pneumonia. Please pray that what ever is going on inside Makenzie's body heals so she can get back to her happy little self!
Please also pray for sleep! Makenzie has been waking up in the middle on the night and won't go back to sleep for hours. I am exhausted and need to get at least one WHOLE nights sleep soon. Well off to bed I go, maybe tonight will be that night!

Friday, October 12, 2007

Adam's Camp Scholarship


We want to thank Mrs. Sally Gart and The Jerry Gart Family Foundation for giving Makenzie a very generous scholarship so that she will be able to attend Adam's Camp in November. This camp will be a wonderful healing experience for Makenzie through 5 days of specialized intensive therapy. Below is some additional information on Adam's Camp. Once again THANK YOU Mrs. Gart for giving our daughter this amazing opportunity!!!!


Adam's Camp Mission
The mission of Adam's Camp is to maximize the strengths and potential of children and young adults with special needs by bringing together dedicated families with outstanding professionals and volunteers to provide specialized intensive therapy programs, family support and recreational camps.

Program highlights include:

¶ Half-day program for 5 consecutive days. Three hours of therapy daily based on individualized treatment plan. Parents participate throughout.

¶ Each child gets some combination of one-on-one OT, PT, speech and music therapy daily.

¶ Transdisciplinary goal-centered treatment. Professional team includes 4 pediatric therapists and 2 volunteers who work exclusively with 4 children throughout the week.

¶ Parent conference at end of week includes picture report and written follow-up recommendations for home, school, year-round therapists, pediatricians and other providers.

Thursday, October 11, 2007

Makenzie had a rehab appointment on Monday at Children's Hospital. It was a GREAT appointment. The doctor took Makenzie off all of her pharmacy drugs! No more nasty side effects! Praise God! Her doctor was also very impressed with her overall improvment! She was most impressed with the fact that her agitation was gone. She said that was HUGE! She is also very supportive of the hyperbaric chamber and supplements. I can't wait to get her back in the chamber. We are still raising money to buy our own so that we don't have to leave CO and all of our family ,friends, and therapists. Feeding is really the olny source of concern right now. Makenzie is 18lbs and has been for 6 months now. The doctor wants to run some blood tests to find out if there is any medical reason she is not gaining weight. We started calorie loading her food and hopfully that will help. Makenzie is making WONDERFUL progress! God has blessed in ways we never thought possible. Keep praying for Makenzie as her road to healing is still long. Pray that she gains some weight and has more energy to heal. Thank You all for your love and support.

Sunday, October 7, 2007

Garage Sale Fundraiser..... HUGE sucess


Thank You to everyone that helped out with the garage sale. We had so many generous people run the sale, bring things to sell, come to shop, and send donations. We raised over $1,100 dollars for Makenzie's Medical fund from the garage sale items alone! THANK YOU ALL!!!!!

Tuesday, October 2, 2007

The Makenzie Fund

To help raise funds to purchase a Hyperbaric Chamber and to pay for therapies and supplements please send a donation of any size to
Eastern Hills Community Church
19697 E Smokey Hill Rd.
Centennial, CO 80015
Attn: Steve
Thank you so much for all of the love and support you are all extending to our family!

Sunday, April 15, 2007

Makenzie Has so Much to Say!

Makenzie had a evaluation with a speech therapist that does Augmentative Communication. This is a way for Makenzie to talk using computers and switches. She did GREAT!!! It is a quite complicated system as there are many different kinds of talkers (special assistive computers) and different ways you can place the switches based on what part of the body is the most easily controlled with the least amount of effort.

Makenzie uses her left arm/hand the best. So the therapist set up the talker to say things like "my name is Makenzie", "I love my mommy", "I like to swing and slide"and,"I have 3 brothers,Zach, Josh and Kaleb". Then she put the switch in fron tof Makenzie and set it to auditory scan. Each phrase had a picture and the computer said each phrase, paused and then moved on to the next phrase. The therapist asked Makenzie to push the switch when she heard something she liked. We we got huge smiles and button pushing! She showed us over and over what she liked the best! It was great!!

Then she set up a computer and put in software with songs on it. I picked out 3 that I thought Makenzie would like. She set it up similar to the talker. It said the title of the song and then moved on to the next. When the switch was pushed it would play the song. Makenzie's choices were " Five little monkeys jumping on the bed, " Old Mac Donald had a farm", and the "ABC song". She listened to the choices an then promptly picked the Monkey song. After the song was over it started the choices again. Well my little stinker waited for the monkey song over and over! We listened to it 6 times! The other cool thing is that Makenzie also used her own voice several times while doing this actir to understand launguage and begin to make more of her own words! WOW!

There is so much more about this that is SOOO great! I just don't know how to put it into words! I have been in tears (of joy) on and off all day! After 2 years of not being able to know fully what Makenzie wants, today for the first time she got to choose.... and she did! Monkeys, Monkeys, and MORE MONKEYS!!!!!! To see that was something I just can't even begin to put into words!!!!

I knew that Makenzie was smart but she really blew me away today!! Auditory Scanning is a difficult skill even for a normal child her age and Makenzie picked it up in about 5 min!!! I can't wait to get this therapy started!!! To do this Makenzie will need a talker (insurance will pay for). The talker will take a bit of time as we will need to weed through all of the many different ones out there. She will need a couple different types of switches, and she will need her own laptop! Yes you read that right... my not even 4 year old needs her own laptop! She is going high tec!!! LOL!

God gives us just what we need when we need it! I started to get mad at myself today for not persuing this before but God quickly talked me down and reminded me that His timing is always perfect! Eight months ago when we lost our speech therapist, Makenzie would not have been ready and we may have just written it off as just one more thing that we tried. WOW!!!!

Below is some information copied from her speech therapist site on this therapy

Jill Tullman and Associates

Augmentative and alternative communication (AAC) refers to an area of research, clinical, and educational practice. AAC involves attempts to study and when necessary compensate for temporary or permanent impairments, activity limitations, and participation restrictions of individuals with severe disorders of speech-language production and/or comprehension, including spoken and written modes of communication (American Speech-Language-Hearing Association, 2005).
Augmentative and Alterntaive Communication (AAC)
ASHA’s position states that ‘communication is the essence of human life and that all people have the right to communicate to the fullest extent possible. No individual should be denied this right, irrespective of the type and/or severity of communication, linguistic, social, cognitive, motor, sensory, perceptual, and or disability(ies) they may present.

An estimated two million Americans are unable to use speech and/or handwriting to meet their daily communication needs. Individuals who need to rely on AAC cover the life span.

Common causes for severe speech disability that may require the use of AAC include both congenital (present at birth) and acquired conditions. Examples include, but are not limited to, cerebral palsy, autism, Down Syndrome, amytrophic lateral sclerosis (ALS) and traumatic brain injury.

AAC systems are intended primarily to maximize individuals’ abilities to communicate as effectively and efficiently as possible.

Reference: American Speech-Language-Hearing Association (ASHA). (2005). Position Statement: Roles and Responsibilities of Speech-Language Pathologists With Respect to Augmentative and Alternative Communication

Makenzie Has so Much to Say!

Makenzie had a evaluation with a speech therapist that does Augmentative Communication. This is a way for Makenzie to talk using computers and switches. She did GREAT!!! It is a quite complicated system as there are many different kinds of talkers (special assistive computers) and different ways you can place the switches based on what part of the body is the most easily controlled with the least amount of effort.

Makenzie uses her left arm/hand the best. So the therapist set up the talker to say things like "my name is Makenzie", "I love my mommy", "I like to swing and slide"and,"I have 3 brothers,Zach, Josh and Kaleb". Then she put the switch in fron tof Makenzie and set it to auditory scan. Each phrase had a picture and the computer said each phrase, paused and then moved on to the next phrase. The therapist asked Makenzie to push the switch when she heard something she liked. We we got huge smiles and button pushing! She showed us over and over what she liked the best! It was great!!

Then she set up a computer and put in software with songs on it. I picked out 3 that I thought Makenzie would like. She set it up similar to the talker. It said the title of the song and then moved on to the next. When the switch was pushed it would play the song. Makenzie's choices were " Five little monkeys jumping on the bed, " Old Mac Donald had a farm", and the "ABC song". She listened to the choices an then promptly picked the Monkey song. After the song was over it started the choices again. Well my little stinker waited for the monkey song over and over! We listened to it 6 times! The other cool thing is that Makenzie also used her own voice several times while doing this actir to understand launguage and begin to make more of her own words! WOW!

There is so much more about this that is SOOO great! I just don't know how to put it into words! I have been in tears (of joy) on and off all day! After 2 years of not being able to know fully what Makenzie wants, today for the first time she got to choose.... and she did! Monkeys, Monkeys, and MORE MONKEYS!!!!!! To see that was something I just can't even begin to put into words!!!!

I knew that Makenzie was smart but she really blew me away today!! Auditory Scanning is a difficult skill even for a normal child her age and Makenzie picked it up in about 5 min!!! I can't wait to get this therapy started!!! To do this Makenzie will need a talker (insurance will pay for). The talker will take a bit of time as we will need to weed through all of the many different ones out there. She will need a couple different types of switches, and she will need her own laptop! Yes you read that right... my not even 4 year old needs her own laptop! She is going high tec!!! LOL!

God gives us just what we need when we need it! I started to get mad at myself today for not persuing this before but God quickly talked me down and reminded me that His timing is always perfect! Eight months ago when we lost our speech therapist, Makenzie would not have been ready and we may have just written it off as just one more thing that we tried. WOW!!!!

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

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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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Thursday, February 22, 2007

International Cell Medicine




In the begining of 2009 we decided that we were ready to try Stem Cell Therapy with Makenzie in hopes that it would speed up her recovery. After much research between the differences between embryonic and umbilical stem cells, and many different protocols we decided to take Makenzie to International Cell Medicine in Costa Rica (ICM).

ICM uses donor umbilical cord stem cells. In older children and adults they also take stem cells from the patients own fat or bone. They inject the cells into either an IV catheter or into the spine. Depending on the diagnosis and age of the patient you can expect to travel to Costa Rica anywhere from 7 days to 4 weeks.

The protocol of how the cells would be administered was determined by Makenzie's age and diagnosis.

For Makenzie this meant that the Cells would be administered over 4 days through an IV catheter.

It was recommended that we arrive in Costa Rica on Saturday because we would spend more then 5 hours in the air to get there.

After a 12 hour trip door to door we arrived in the SJO airport. Makenzie's wheel chair was waiting for us the second we got off the plane with an airport attendant that would help us get through customs. After we cleared customs we made it to the baggage claim were a driver was holding a board with Makenzie's name written on it. What a relief that was!!!

The driver helped us load all of our stuff in the van and we headed out to our hotel. Everything was so smooth and ICM was off to a good start in the first impression department!

Makenzie's treatment began on Monday with an appointment with the doctor at the ICM clinic. He answered all of our questions and really spent a good amount of time talking with us.

WE then heading to a private hospital about 15 min away to have the IV catheter placed under general anesthesia, in Makenzie's leg.... the veins in her arms were not big enough. They did all of the admitting paperwork which was a bit tedious as there English wasn't the best. The doctor came in a helped me talk to the anesthesiologist and then Makenzie was taken into the OR. 30 min later I was told she was done and escorted to me SCREAMING baby girl. She was so upset, but she was done and now we had a way to get the Stem cells into her body! YEAH!

Tues she got her first injection of Donated, umbilical cord stem cells. She received the same injection on weds, Thurs, and Friday, as well.

She got 2 different types of cells totaling about 10 million cells each day. The cells were injected into the IV over about 10 mins.

The first ones are mesenchymal stem cells which are stem cells that are able to differentiate​te into any type of cell the body needs. These can create new tissue to regenerate in the damaged areas of the brain. The second ones are CD34 cells - these help increase the blood flow to the brain to help the mesenchymal cells get to where they need to be.

The IV was then then wrapped back up and we returned back to the hotel for some R@R and a bit of adventuring out and about in San Jose, Costa Rica!

On Friday after her injection the IV catheter was removed and we were cleared to go home!

ALL DONE!

We left San Jose early Saturday morning and returned home about 6pm... SAFE and SOUND!!

For more information including links to my journal,the ICM clinic link, update reports and other stem cell kids please click here.

Tuesday, February 20, 2007

My Medical Need and Special Equipment

Here is a list of sites and links that explain some of what it takes to care for my special needs. Please contact my mommy at makenziesmiracle@comcast.net with any questions or for more information.

My Medical Needs
Augmentative Communication
Doctors and Specialists
Preschool
PT, OT, Speech, and Feeding Therapy
Sensory Integration

My Special Equipment

Braces
G-Tube and Feeding Equipment
Seating
Vantage Lite Communication Device
Therapy Tools
Walkers and Standers

For information on Stem Cells, HBOT, Anat Baniel Method, Orafacial Myology, Suit Therapy, and other alterative treatments please click here

Anat Baniel Method

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

Alternative Treatment Links

Here is a list of links to clinics we have used, information I have found, and personal experience we have had with some of the Alternative Treatments Makenzie has received. Please feel free to contact me with any questions or for more information at makenziesmiracle@comcast.net

Hyperbaric Oxygen Therapy
Hyperbaric Oxygen Therapy
Mums National Parent to Parent Network
HBOT of Arizona

Stem Cell Therapy
Umbilical Cord Stem Cell Information
Stem Cell Therapy Journal "Our trip to Costa Rica"
International Cell Medicine

Anat Baniel Method (ABM)
Information on ABM

Anat Baniel Method Official Website
Andrew Tarr- ABM Practitioner

Intensive Model (IMOT) Neuro Suit Therapy
Information on Intensive Neuro Suit Therapy
Napa Center Video
IMOT Journal Week 1
IMOT Journal Week 2
IMOT Journal Week 3
Napa Center

Sensory Learning
Sensory Learning-SIRRI
Sensory Learning Center

Orafacial Myology

Friday, February 16, 2007

Resources

Here is a list of websites I have found helpful in raising a child with special needs. If you have any questions or would like more information please contact me at makenziesmiracle@comcast.net

Affordable Weighted Blankets
Augmentative Communication
Family Voices
Hart Walker
HBOT Information
Kids Mobility Network
NAPA Center
Orolfacial Myology
Parent 2 Parent
United Seating and Mobility

Saturday, January 13, 2007

Look I am Talking!

Makenzie uses an Augmentative communication device to talk! She has been getting speech therapy for about a year to teach her how to use it!

It took a long time for us to decide what talker would be right for her but in the end we decided on a Prentke Romich Vantage Lite.

She makes the talker work by using auditory scanning and pushing a switch with her elbow.

She has learned how to say many things like, see you later alligator, My name is Makenzie, I want to eat cheese cake, and the list goes on.

She is also able to play with cause and effect toys, turn on the TV, play a video, and play games on the computer. She LOVES it!!!

Here is a couple of videos. One showing her using her talker to play with a toy and the other explaining how it works!

Enjoy!


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