Christmas is now over and the busyness of the season is coming to an end! I love Christmas but it is sure nice to just get to take a breath and relax for a few days when it is all done!
Makenzie is doing well! She has had a sore leg for about a week now and today it seems to be feeling much better! She stood up and took a few steps with her walker and enjoyed walking around the house (with mommies help of course) for the first time since it started bothering her. It was great! She was also a TON looser! When one part of Makenzie is hurting you can see it in her whole body! I am so glad she is feeling better!!!!!
Now for the really cool news!!! We have made plans to go to California to do intensive model suit therapy in June or July!!! I am still waiting for the center to call me back on the exact date but it is going to happen!!! God is so good! The doors just keep flying open and it is such a huge blessing for Makenzie to be able to have the chance to go and do this!!!! While we are there we will also be doing auditory therapy.
There are several different kind of auditory therapies out there. They however can only be repeated every 6 months in order for the brain to process the new information. That being said we are going to begin Makenzies 3rd round of Sensory Learning (SIRRI) tomorrow so that she will be ready for the auditory learning in CA in July! Needless to say it has been a crazy day of planning!
Other then that every thing is great here!!! We had a wonderful Christmas with all of our friends and family and are now gearing up to go back to school and therapy. Keep praying for Makenzie and all of her upcoming intensive therapies! God is so good and with out Him none of this would be possible!!! Thank You Jesus!!!!!
Tuesday, December 30, 2008
Christmas is now over and the busyness of the season is coming to an end! I love Christmas but it is sure nice to just get to take a breath and relax for a few days when it is all done!
Thursday, December 25, 2008
Well here it is CHRISTmas Eve! Were does the time go!? We had a great day and celebrated with our family! Makenzie was a very happy little girl. We ate and ate and ate and ate!!!! First brunch then dinner, cookies, appitizers, desserts, more cookies, and finish it off with a piece of peanut butter cheese cake! I am stuffed! Tomorrow we get to do it all over again!
I am so grateful! Even though the holidays are so busy and a bit overwhelming I am so glad that God blessed me with such a great family! I hope you all find yourself surrounded by the people that you love in this CHRISTmas season! I know that I am!
Please also remember why we do all of this! That little baby that came to this world in a cold barn to live only so He could die for US! WOW! This is His party make sure you leave the door open for Him to come and be part of your celebrations!
Thank you for all of the prayers that you have lifted for my little girl and family this year! It was so great to see how far she has come from last Christmas! It is huge! Keep praying! You could give us no better gift this Christmas! Thank You and God Bless!
Sunday, December 21, 2008
I just wanted to post a quick update tonight. We have been looking into weighted blankets for Makenzie for a while now and a couple of weeks ago I final ordered one! Well, it came today! I was going to wrap it and put it under the tree but curiosity got the best of me! It is BEAUTIFUL!!!!! Even better yet Makenzie loves it! So, Merry Christmas Baby Girl!!!!
In a person with a brain injury sometimes weight is very calming. This seems to be true for Kenzie! She is a god sleeper for the most part but all of her therapists have recommended this for her and it took her about 5 min to drift off to dream land tonight!
I also wanted to let you know a bit about the company I bought it from! I found them in a google search. I spoke with a wonderful woman named Donna. She was so kind! When I recieved the blanket I opened it up and there was a brochure in the box. I opened it and started reading. By the end I was in tears!!!!!! Here is what is says:
We consider it our ministry to create quality, affordable weighted blankets for the many peole that benefit from their use.
My 5 year old grandson, David has Autism and was how I learned about weighted blankets and their benefits.
I started my website a couple of years ago and began making blankets. As the buisness grew, I drafted a couple of friends to help and we started to use the quilting room at our church to sew the blankets.
Ok.... here is where the tears start falling.
Each person we make a blanket for is prayed for while their special blanket is being made. I have met so many amazing people and been blessed and inspired beyond what I could have imagined with their stories!
Every time I cover my little girl with that blanket she is covered with the love and prayer of total strangers!! WOW Thank You Donna and Affordable Weighted Blankets!!!!! You have blessed me with SO much more then a soft, beautiful blanket!
Please visit their website! If you are in the market for a weighted blanket these blankets are gorgeous! They are also priced much under the going rate! Please support this company they have been a true Blessing from above!! THANK YOU!!!
I am not sure how to get a link in the post so you may have to copy and paste the link into your browser! Thank You and God Bless!!!!
Friday, December 19, 2008
It has been another busy week! Makenzie continues do do well! She has been continuing to do new stuff in therapy and is super happy!
I got her a new corner chair and she loves it! It has a tray and when you put toys on it she has been really playing with them! The movement in her arms continues to get better everyday! At school she continues to use switches and are in the process of getting the adaptive communication team in to give her an evaluation! She is ready to talk one way or another!
On the talking note.... Makenzie Said "MAMA"!!!!!! It was no where near perfect being that she doesn't have lip closure but we were sitting on the couch and she looked up at me and said it!!! She is also working on "UH OH" She is really good at the UH part and the OH part keeps getting better! I am so proud of her!!!
Today at school they made gingerbread houses. Makenzie was not to interested in building but she did enjoy the frosting and candy!
We also had a doctor appointment this week and have come up with some new ideas after the first of the year! Please pray that God would give me direction on what to try and when.
I posted some new pictures at www.dropshots.com/makenziesmiracle
You can click on the links tab above and it will link you to Makenzie's dropshot page. Caringbridge won't let me post picture because the files are to big so I am going to have to remember to change the setting on my camera so that I can get some new pics on this site! Until then check out her pictures on Dropshots.
Keep praying! She heals a bit everyday! Slow but steady! Thank You all for everything! Thank You also to the women from the Boulder womens Bible study for the generous gift!
I guess I should go and get to some Christmas wrapping! Fun Fun! God Bless, Pam
Saturday, December 13, 2008
OH HOW SWEET IT IS.......
to be back to a normal schedule!!!!!
I had no idea how much we relied on a strict daily schedule!!! It is amazing how much smoother everything goes!
Makenzie went to preschool for the first time in 3 weeks! Her teacher said she was so happy and giggly! She loves school! I do too!
When I got up this morning I had no idea that they had called for snow!!! There was a lot of it! I debated on if I was going to take Kenzie out in the weather to get to school. Then I remembered that I had to go fill her reflux meds so I figured if I had to go out anyways I would just bring her! As I walked into Target I realized that this was the first time in 3 weeks that I was completley kidless!!! It was great!!!!!!
Makenzie did great in therapy and got a couple really great
massages! I kepp wondering where mine is!!!!!
Not much else to report but please as always keep praying for Makenzie! We now start to prepare for suit therapy and Disney!!! I can't wait for the day when I can see the light at the end of the tunnel and not be preparing for any major trips! The day when she doesn't need any of this! The day that the only trip we take is the one to Disney or where ever.....all of us.... just for fun.....for no other reason then because we want to!! Oh that will be the day!!!! Please pray for that day to come soon! The day that Kenzie's face will light up when she sees Mickey Mouse! The day that she can look up at me and say "Look Mommy... its Mickey" and wiggle out of my arms to run and give him a big hug! Oh the sweet simple things in life!!! PRAY for that day!!!!! Tons of thanks to all and God Bless Pam!
Thursday, December 11, 2008
Another couple of busy days! I was able to get 75% of my Christmas shopping done on Tues at ONE store! It was great! One stop shopping.... love it! This year I have resolved not to buy the boys and video games for Christmas which proved to be a bit hard to come up with ideas! They are getting to the age where action figures and Lego's don't cut it anymore! Now everything they really want is in the hundred plus dollar range. Zach's first reponse to the "what do you want for Christmas" is "a go kart" ...... Right!!! Well, that is just not going to happen so creative is becoming my middle name!
After shopping I stopped at home to unload the truck and then headed off to the bank. This is where God stepped in with his protection. My tires have not been handling the snow well and there is a Discount Tire right next to the bank. I had about 20 min before I had to pick up Kenzie so I decided to stop in and have them look at my tires. Needless to say my tires where fine other then the one with a nail in it!!!! I had no clue! It had like 14 lbs of pressure in it!!! OOPS!!!! They filled it up and after I picked the kids up I went back and they fixed it and siped the tire so they would get better traction! Thank You Discount! I would have headed accross town this morning with a flat tire! Thank You Jesus!!!!!
This Morning I went and spoke with a Church Bible study about God's hand in my life. The ladies there were great! I am so not a public speaker but I did the best I could. I am sure I left a ton out but that is ok.... I have never talked publicly before. I have told Kenzie's story hundreds of times but never in that setting! Something new every day huh?
I then headed to the other side of the metro area to a non profit. They are a non-profit organization that provides DME (durable medical equipment) to children with special needs. I got Makenzie a new corner chair that will allow her more independent sitting and help her work on her lateral trunk strength! I am so excited because her being able to sit in this type of chair is huge!!! She is healing! Slow but sure! We also got a brand new special needs stroller that is less bulky and easier to put her in for quick trips into the store or to the doctor. It will be great to take on trips! THANK YOU Kids Mobility! Anyone in the this area that has piece of DME that is not being used... donate it to these great people! Any one that needs DME.... look them up! They were wonderful and the paper work is very minimal!!! We got $4000.00 worth of equipment for $250.00!!! AMAZING!!! God is so good! He continues to provide... Every step of the way!!!
Stop in and say HI. I would be honored! Keep praying! Thank You all and God Bless!!!
Monday, December 8, 2008
Another busy weekend! Christmas parties, birthday parties, church, and of course shopping! No not Christmas shopping.... I haven't started that yet... still plenty of time left right?!
Makenzie is doing very well! She is so happy and doing well in therapy. I have been working very hard at improving the range in her arms and loosening up her shoulders and she seems to be a bit looser!
Well, I just wanted to stop by and hi and let you know that we are all doing well! Life is busy but good. Keep praying for Makenzie! I will try to post some new pictures on her dropshots soon. Hope all is well and God Bless!
Thursday, December 4, 2008
Wednesday, December 3, 2008 10:53 PM, CST
Ok, so there is 3 weeks until Christmas! WOW that seems so close! I guess it is!!! I have been thinking about what I want for Christmas. Other then the obvious, Makenzie to wake up and be healed... completely, I can't think of anything that I want. I have a beautiful family, a house, a car, and food to eat! Life could not get better! No toaster, I Pod, or picture frame could ever top that! It is truly amazing during the holidays how much we take for granted! Every one just seems to want more, more,, more! I think I am turning into a party pooper!
My life is crazy busy.... I love it! This weekend while my boys were at the cabin and there was no school or therapy, I realized that I have a perfect amount of crazy in my life! I have spent the last few months sticking to a very strict schedule and I love it. Life is so much more predictible! When it is 3 pm and the house is cluttered and the kids just spilt coke all over the clean floor, it is ok because at 7pm I can clean it, with out a 26 lb princess on my hip! And when I have 6 different errands to run... well lets just say it is amazing how much you can get done in 2 hours while your munchkin is at school! It is great to know when the light at the end of the tunnel is! Well there is never an end to the tunnel but you all get the point!!
Kenzie is doing well at school! When I was in my class Makenzie did fine as long as she was here, with people, she knew and trusted. Every time that Erica took her over to her house it was a train wreck! Crying, puking, craby..... always ended up back at our house. So why does she not mind school? She loves all of the kids! We went a bit early yesterday and there was a couple of kids running around outside. She got so excited! I stood her up and Makenzie walked all of the way to the door to follow them! Oh... it gets better! To get to the door she had to walk up 7 steps! She is so amazing! Then she was smiling ear to ear when she saw all of her friends! She loves kids! They are the best toys ever! I am so glad I decided to send her to school this year! She really does love it! Thank You to all of her teachers, therapists, and aids for making school such a safe, fun, and positive part of Makenzie's healing!
She is also still continuing to amaze us with the improved movement in her arms! She also helped her PT sing a song today by saying "Ah" in the song right where it was supposed to be said!
Please keep praying! Ok, so I lied when I said I couldn't think of anything I needed for Christmas! There is one thing... Prayer!!! Pray, Pray, Pray! Please believe that prayer works and that God hears and is answering! I know this because God has touched my heart and given us so much this year! Thank you and God Bless!
Monday, December 1, 2008
It has been a quiet weekend. The boys went to the cabin and so it was just me and Miss Kenzie! It was great! A bit too quiet but a couple of days to rest and enjoy her was a nice break! We went to church this morning in the SNOW! I thought it was never going to turn into winter! It did!
I got out her toy that hangs toys down. The last time I got that out she really could have cared less. Well today she was all over it! She hit and grabbed the toys and laughed and talked(babbled). I shot a video that I posted on www.dropshots.com/makenziesmiracle. Check it out. After I shot that video I rolled up a towel and put it under her head and she really went at it. It helped her to see the toys instead of having her head flat on the floor! She is doing so well! Thank You Jesus! I am so excited that she is finding her hands! It is amazing! Not only that but she is enjoying it and even looking at what she is playing with! WOW! Baby steps! I am one proud mama!
“God blesses those who realize their need for him, for the Kingdom of Heaven is given to them”. (Matthew 5:3 NLT ).
God has been speaking this to me over and over in the last couple of months! It is amazing what kind of peace there is when you give it all to Him! Kids, marriage, money, health, the list goes on and on! I know that God is carrying my family through each new era in our lives. It is a great feeling! I am still human and ache for the loss in so many parts of my life but the peace the passes all understanding takes away most of the sting! Keep praying! God Bless!
This site has a very simple guest book! All you need to do to sign is to enter your e-mail and create a password. We would love to hear from you! Also if you sign the guestbook or click on the box at the top of the journal you can be notified by email when there is a new post. Hope to hear from Makenzie's prayer warriors! I would love that!
Dear Heavenly Father,
How we acknowledge our deep dependence on you every day! We thank you that in the midst of circumstances that stretch us to the end of ourselves, you pour out greater measures of grace, peace, and mercy than we have ever known before. Thank you, Lord, that in the midst of what feels like impossible situations, you have made a way through. And even in the midst of life’s most trying times, you continue to pour out your blessings and provision to us. Lord, I ask that we would always recognize our acute need for you, and that we would always be able to see the great blessings you have showered upon us.
In Jesus’ Name,
Friday, November 28, 2008
Today was a busy, busy day! We got our tree up this morning! We usally do this on Friday or Saturday after Thanksgiving but the boys are going to the cabin tomorrow for the rest of the weekend. Zachary is going to go skiing with my brother for the first time on Sat! He is going to have so much fun!
After the annual game of football, the boys all came home hungry and ready for dinner! Turkey, turkey, turkey!!! All in all it was a good day!
Now, for the real reason for the season! Thanksgiving! I have so much to be thankful for! I could sit and list on night but I think that you all know what that list is and yours is probably similar! For me this year I have to say that the thing I am most grateful is what the last 2 years of my life have done for me. Now before I go on, if I could take back March 25, 2007 I WOULD! I CAN'T! So.... with that said I am so thankful that God have touched my life! he has showed me his hand in so many ways and I don't think that I would have ever opened my eyes wide enough to see the things he is doing and has done for me in the last 29 years! I am thankful that God has drawn me close. I can truley say that in the last 2 months I have been touched by His true peace. I feel so at ease! My princess is in His hands and what is going to be will be! God has opened so many doors for me lately! He has reveled Himself to me in many very obvious ways and showed me that before I need my Makenzie to be healed that I need Him! I will never give up and I will never stop asking God to continue to heal her but giving it to God sure does make every day a ton easier!
Just like the 3 men in the parable with the idol and the firey furnace, their unbending Faith to say that they would not bow down to good ole Nebby's idol. When told they where going to be burned alive their response to him was that God would save them from the flames.... but if not...... I choose to believe that God can heal Makenzie.... but if not..... I know that He is still in control and has a plan! It will be ok and Makenzie is doing so well so Thankful does not even begin to discribe how I feel tonight!
I hope all of you where blessed with family, friends , and food on this thankgiving. More then that I hope you felt God's hand touch your life!
I posted new pictures on Makenzie's dropshots site. I set this site up a long time ago but didn't use it because you can't post many pictures and no videos so if you click on the links tab above and go to www.dropshots.com/makenziesmiracle
it should link you directly to her pictures and videos. Check it out! Oh and I know it is not new years but for some reason Caringbridge won't let me change the back ground! I want my blogger site back!!!!!!! TEARS!!!!! Keep praying!!! Prayer works!
Wednesday, November 26, 2008
My brother is off the market!!! We spent this weekend celebrating his wedding! It was a lot off work but a TON of fun! It was a beautiful wedding and great party! I finnaly have a sister! His new bride is a wonderful woman! I couldn't have asked for any better sister in law of aunt!
Makenzie did GREAT!!! We didn't get home untill after midnight last night! She was so happy! She loved dancing with her uncle, brothers, grandpa, and mommy! She even did the congo line!!! She was so cute!! The boys also had a great time!!! Kaleb was so handsome in his tux!!!
Makenzie is doing well! She is tolerating her feeds great! We put her back on her reflux meds and she hasn't had any puking episode in 2 days!!! Yeah God!!! She also is only refluxing 2-3 times a day!!! Well I am off to bed! It is Monday again...... back to the grind!!!
Tuesday, November 25, 2008
I just thought that I would give a quick post tonight. Makenzie continues to do really well! She just continues to amaze me! I was talking to her PT yesterday, she was doing a recertification for her services and a paper fell out of her file. It happened to be a recert from almost a year ago. Last year at this time Makenzie was working on getting into ANY position that wasn't a ball without puking. THAT'S IT! Now we are working on rolling, sitting, all fours, standing while holding onto a walker, and so much more! God is so GOOD! If you can't see the Miracle's in that.... you must be blind!
In therapy yesterday Makenzie was standing up next to her walker and was holding on with her whole fist open and her thumb all the way around the handle...wow! Her therapist sat her down and asked her to let go and one hand at a time she took both hands off of the walker....wow again. Then when stood up Makenzie was asked to put her hands back on the handle and guess what.... one hand at a time she lifted them both up and opened her hand and placed them on the bar....... HOLY COW! You all should have been here to hear the uproar in my house yesterday morning! I know that most of you don't understand how big this is but it is BIG!! It means that Kenzie knows that her arms are there and now can begin to learn how to use them again! It, as always is slow, but she is healing!!!!
Her speech therapist at school is also amazed! She was telling me yesterday after class that they were singing Old Mac Donald and she got to make the animal sound with a switch and on cue she would push it to make the sound in the song the class was singing...... AMAZING!!!! I am running out of Adjectives! To say the least she gave us all a great Thanksgiving present!
She is also sitting much better. She is pushing with her hands and keeping her balance. She is holding her head and trunk up too! She used to sit all folded up and every once in a while she would lift her head. Now she is sitting upright and dropping her head much less! It is so great to see! She is getting so close!
One more Thanksgiving thought. I will write about the many things I am thankful for. More to benifit me then you but for tonight her is a list of Thanks that my 7 year old wrote at school
I am thankful for
natcher ( not sure)
my broter (brother)
my grate grandma
my grate grandpa
and chrismis (Christmas)
I don't think he was done!!! HEHE
Keep praying! God hears us and listens! Remember in this season to also give thanks to what God has done for our family! Thank you and God Bless!
Sunday, November 23, 2008
Well, once again it has been a very busy week and weekend! I took my State Boards on Sat. and passed!!!! Whew, what a relief! Makenzie is doing well and is ready for a short therapy break! (she told me so...LOL) She has been babbling a lot and has be rolling more too. She of course is also still a wonderfully happy girl! Thanksgiving is coming up so fast and of course the 3 days before then are PACKED! It will be so nice to spend some time with my extended family. It has been too long! Maybe it will be a relaxing day! That would be a first in a long time! Well not much else to say. Please keep praying for Makenzie and our family. Thanksgiving always brings so much but in the past 2 years I have realized how much I have taken for granted! I think this Thanksgiving I am most thankful for God's Peace! It feels so good to know that His hand is working in my life and that He is in total control! Thank You Jesus! Until next time take care and God bless!
Here is a little side note:
Here is a verse and prayer that God gave me this week during a rough time. God just continues to show up in my life and it gives me so much hope and joy to know that He knows and is in control. Miracles happen every day and the thief does not have the power to destroy those who believe!
(Jesus speaking) “The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.”
(John 10:10, NKJ)
I pray today that no plan of the enemy to steal, kill, or destroy this family or Makenzie will prosper. I pray that you would expose every area of our lives that the enemy has targeted for destruction. I thank you that you have a plan to strengthen every area of our lives that are weak and vulnerable to the thief. I thank you, Lord, that you have come that we may have life, and that we may have it more abundantly; and that you long for our family and for Makenzie to have vitality and strength. Grant us new levels of physical life and spiritual life that are rich in quality and quantity. Restore that which has been lost along the way and bring us into all the abundant life you have for us, regardless of the autism or any other struggles we face.
In Jesus’ Name,
Thursday, November 20, 2008
Tonight I am going to ask you for favor. I believe that in some way we are all broken. We all have different crosses to bear. Some are just more visible then others. My family's cross happens to be the tramatic accident to our daughter and sister, Makenzie. Everyday life seems to get a bit easier but the loss will never fully go away. Trusting in God' promies helps and brings me much hope and comfort. However, I am human. Don't get me wrong, I am not sad tonight. Makenzie continues to make wonderful improvements. I love her more then ever!
I would like you to pray tonight for my whole family. Please pray for yet another miracle. My other kids have been through more then most elderly in the past 2 years alone! Pray that God will protect their heart and have them to grow up to be the men God made them to be. Please pray for Chris and I. Pray that as a mommy and daddy of a child that we can not fix, that our hearts would be healed and protected. Pray for the miracle of healthy relationships. Taking care of Makenzie is a 24 hour job and then there are 5 other people in this family that have needs. After 2 years tired does not even begin to discribe the overall mood!
As Thanksgiving approches I have so much to be thankful for! God has been so present in my life and His holy Spirit has blessed me with peace, hope and the understand that I am not in control. Everthing is according to his plan and sometimes I don't understand but I am learning to trust more and more everyday! So God, bring it on, let's see what you've got! Thank you all for the thoughts and prayers! They mean so much! We love you all and could not have made it this far without your help! God bless!
Wednesday, November 19, 2008
Well I had a long post going and I am not sure what happened so tonight you het the shot version. . Makenzie had a great day! She has made some very good gains in the lst 2 weeks! She is starting to use her arms so much more! All of her therapists and teachers are amazed. God is so good!! She has been helping pull her hands out of her shirt and putting them back in! She held onto her walker and put her right hand back on whn is feel of! She had a great day! I am so proud of her! I don't remember what else I had wrote in my mysteriously erased post so I am going to say goodnight. We have a crazy busy day tomorrow! Please pray for Makenzie! She is in God's hands and he hears our prayers!
Friday, November 14, 2008
This week has been crazy to say the least! Crazy or not Makenzie is doing great!!! She is so much more aware and continues to follow directions! She is moving around a lot more and her head control gets a bit better everyday. She wants so bad to get up and play with everyone. God is so good! She used to just lay and watch but not really so any desire to participate. Now she gets excited and gets to moving and laughing. She has been trying to to get on to her tummy to push up so she can see more. With help she can lay on her tummy and push her arms straight and hold herself up! When she is in that position she is trying to lift up her butt and put her knees under herself. She is also moving her arms forward in a crawling motion! I am so proud of her!
Makenzie also rode on the trike today in PT and made it go forward by herself one time. An accident? Maybe, but I don't care!!! She loved it! I will be getting measurments and looking into different adapted trikes and then submiting a request to a non profit out here that should be able to get her one free of charge!
Life continues to change as it always does! In the past 2 years though I have tried to really sit and listen to what God is saying and what he wants for me! I continue to be amazed by his unfailing love and direction that he gives. My life has been a rollercoaster for a long time and I really feel at peace today with the direction that God has been sending me in. Thank You God for the open doors and the peace that you have given to my family!
I hope all is well and once again thank you for your prayers and support! Makenzie is in God hands and some days I wish I could be her! Always happy, laughing , smiling, easily entertained, and loved by more people then I could ever count! God hears our prayers! Keep praying! We are seeing miracles every day!!! Thanks and God Bless!
Friday, November 7, 2008
Makenzie is doing so well!!! She has been holding her head up much better and babbling a ton! She is still following simple directions almost 100% of the time! She had PT at Children's this morning and she was pushing up on her stomach and I told her to kick her legs and well...... she did just that! She gives this huge smile because she knows that she did it!! It is so cute!! She is sitting much better and when the flexion gets the best of her and her head drops she has been bringing it up soooo much better! Now we need a corner chair so that she can be upright more and work on her trunk strength, There are a few companies that do equipment exchange and I have a call in to our DME supplier to find out if the insurance company will cover it. We shall see! one little chair with the word therapy or adapted in its discription will run about $1000! Crazy huh?
Makenzie also rode on a trike today during therapy! It was awsome!!! There are also organizations out there that will help us get an adapted trike for Makenzie! I am going to start working on that in hopes that by summer she will have a new toy to ride with her brothers in the sun shine!
We had an appointment with GI on Weds and it went well! her doctor was impressed with how well she is doing with the bolus feeds in her stomach! We talked about what the plan is and decided that slow and steady in the way to continue. He also suggested that we try adding a 4th feed in. I don't know if that is going to work however because between school and over two hours of therapy there is just not enough hours in the day.
Then we head down to radiology to have her tube changed and they had a doctor who didn't have a lot of experience with placing a GJ tube do the procedure. Needless to say she messed it up and by the time they got an experienced doctor in there Makenzie's gut had shut down and her intestine was spasming and they could not place the tube! We left the hospital with a g tube and the far fetched chore of trying to add 17 oz of liquid in to her G tube feeds on thursday. She did really well and tolerated 3 feeds of 8 oz with out any vomit but we were still 10 oz shot of her daiiy needs. So this morning we went back to radiology and had them place the GJ tube this morning befor therapy. I took less then 10 min! Too bad they did not just do it right the first time!!! Oh well it is fixed and we are back to normal!!!
Please keep praying for Makenzie! She is doing so well!! We continue to feel all of the love and support! We could not so this with out all of you! Hope everyone has a great great weekend and God bless!
Sunday, November 2, 2008
Photo Sharing - Video Sharing - this week! It was so cute! They were playing and Makenzie would lift her head up so her PT put her next to her and told her that they couldn't play until she lifted her head and right away she put it up and they didn't have an more head problems!!! She is such a stinker!!!! She understands so much!!! She is also sitting a ton better and when reminded to push while in sitting,she will. I am so proud of her!!!!
I was gone for almost 4 weeks all day doing my CNA class and got to see her PT for the first time yesterday. I felt so good because the first thing she said to me was they all of her therapist could tell how much I was doing with Makenzie because while I was gone it took them much longer to get through her tone at the begining of the session!!! She was taken care of very very while while I was gone but all of the extra work that I do with her was validated!
In PT on Fri we took Kenzie out to the new trampoline and she loved it! Even though the trampoline was given for the boys, I think Kenzie will get a ton out of it too!!! Her PT showed the boys how to do a bunch of new trick on the tramp too! It was a great time!!!!
We went trick or treating on Friday. We had a great time and the Kids got WAY to much candy!!!! Makenzie lasted for 2 hours!!! She giggled and just took in all pf the kids and light the whole time! She thought the guy on the porch with the chainsaw was a bit scary but so did the boys!!! I had to koax Josh to go ring that doorbell!!! It was really cute!!! Well the time it changing and it is much to late for me to be up!!! More to come.....
Keep praying for Princess Makenzie!!! We are so greatfull for all of our prayer warriors!!! Thank you!!!
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Monday, October 27, 2008
I am so sorry that I have been so absent lately! I have just about finished a three and a half week nurses assistant course! What does this mean you may ask?...... It means that once I get done on Weds. I will begin to get paid to work for Makenzie as a CNA!!! 6 hours a day 7 days a week!!!!! It has been a very LONG 3 weeks but I made it through!!! I want to say a HUGE Thank You to my mom and friend Erica for putting up with my high demands and to her OT and PT for coming EVERY day for three weeks!!! You all are life savers!!!! Makenzie has done great!!! She has also still been going to school all by herself and that also went well! THANK YOU!!!!!! Thank you also to our GREAT GRACIOUS GOD for giving me peace about leaving Makenzie!! I, until the beginning of Oct., have not left Makenzie for more then about 1 hour since her injury! So being away Mon through Fri form 7:30am until 2:30pm was a huge test of my faith and drive to help make my life better! The company that I will be working for is a great company and offers all of the standard benefits and even though I don't have to leave my home... on paper it will look like I have professional job experience!!! It feels so wonderful that if nessesary I can provide for my kids!!! Thank You Jesus for opening the doors for my family to be able to do this!!!
This has also made me realize that I am very smart! (sorry, my head still fits through the door) I also realized that even though western medicine drives me crazy there is so much I have to offer and feel very led by God to begin the slow uphill hike to a degree and PA or nursing school! There are so many people out there is the same shoes that need some one who gets it and can tell then on their darkest days that there is still hope!!! I am guessing that this will be a very long (10 years of so) process but in 10 years life will be so different then it is today! I will keep you updated on these thoughts and dreams!!! I have decided that I will think in the now and take one day or class at a time and only by the Grace of God get across the finish line!! Tecnology is great because I can do the first couple of years at home on the computer!!! Pray Pray Pray!!!!
Well that is all for now!!! Got to go get Kenzie who has decided to roll to the other side of the family room is now stuck!!! Keep Praying for My little Princess!!! I will try to get some new pics up soon!!!!
Thursday, October 9, 2008
Sorry I haven't posted in a while....life has been CRAZY!!!!! Makenzie is doing great! She has done wonderful in therapy and her feeding has been going well! Orally she is still about the same but we are now .5 oz away from being half way fed in her stomach instead of her intestine! That is really great! To me it means her body is healing and we are on our way to more brain healing! On Sat. we will be moving to 4 oz, 3 times a day in 15 mins!!!! I have decided that it would be a great Christmas present to meet our goal at the begining of Dec! It has been really hard for me to take this slow and not up the feed earlier! I want her to succeed and I think that her GI doctor is right in taking it this slow! She has never done this well!!! Thank you Jesus!!!! I can't wait to be done with the night feeds!!! Getting up to switch her formula to water at 2 am every night is getting old..... fast!!!!
I spoke with a nurse at the Hospital yesterday and I think I am going to set up an appointment to try a dose of Baclophen (muscle relaxant) into her spine. Makenzie is tight. Not half as tight as she was but I want to be able to know if this will help. I will not give this med orally because it makes her dopey!!! Given into the spine it has a ton less side effects. It would require a surgery and pump into her stomach area. If we did this there would be no more HBOT. I am just thinking about this and without the test dose I don't know if this treatment wis even on the table! The test will let us now if it is even something to think about. I spoke with a parent whose son had a baclophen pump placed 4 years ago and it has been amazing for him. He went from no movement to reaching out for a toy within 45 min of the test dose being given! I at least want to know! Please pray for this decision! If she has good results that will bring on a whole new monster!!! Please pray for Gods leading!!!! Thank You!!!!
Wednesday, October 1, 2008
Life has been alright! We are almost back into the swing of things. Makenzie is doing well and is still tolerating her G-tube feeds. We are now up to 3 oz in her tummy and she is doing about the same orally. The eating thing is still slow but she is not gagging, chocking, or asperating so we will wait on the Lord and know that in his time it will come! She loves to lick Teddy Grahm's and pretzel's! It is so cute! She is still fairly loose and did a good job of sitting alone today. She is going to go back to school tomorrow for the first time since we have been back from AZ. I am sure she will be so happy!
We saw Kenzie's rehab doctor this week and she was very impressed with Makenzie's improvement. I love her doctor. We sat and talked for about a half an hour and she asked me why I had made the appointment. I gave her a confused look and then she said... "you already know all of this stuff... what do you need me for"..... She is so supportive!! Makenzie is still very tight in her arms and shoulders. I asked if we could do a test spinal Baclofen (muscle relaxer) to see what would happen if we totaly loosened her up. She said yes of course. The only problem with that is there is only on way to get that drug into the spine and that would require a pump to be surgicly placed in her stomach area. I am not going to do that. So if it was to work then what!? Then I will have a new issue!!! I would love to see my princess loose as a goose for a time though!!
Please continue to pray for Makenzie and our family. As time goes by and life changes it is hard to know which way to go! Pray for direction through God's leading! Life is such a roller coaster and with 4 kid's lives hanging in the balance it is hard to always know what is the right thing to do! We could not live this life with out all of your prayers and support! THANK YOU! Keep praying! Prayer Works!!!1
"“Patient endurance is what you need now, so you will continue to do God's will. Then you will receive all that he has promised.” (Hebrews 10:36, NLT)
We know that your Word tells us that you are faithful to complete the work you have begun. Thank you for the work that you are doing in each of us to draw us into a victorious and joyful life in you. We especially thank you for the work your are doing in Makenzie. There are times when we see progress, and times when progress seems very slow. It is easy to wonder when we will see a shift. We long for the day when certain milestones will be reached. But, Lord, you have a plan. Help us to understand what our part in your plan is and to do it faithfully, and help us to have the patience we need to leave the rest to you. And when we become frustrated or impatient with your timing, help us to remember that if we endure, we will receive all that you have promised. You are faithful and trustworthy, and we thank you that you have not forgotten us, but are at work on our behalf.
In Jesus’ Name,
Monday, September 29, 2008
I don't have much time but I wanted to let everyone know that the IV Glutathione made a difference! We have been fighting Makenzie's flexton for like ever! Today for the first time in 9 days she had therapy and she was still super loose and her flexion has improve a TON!!!! That is all that we did in AZ other then the evaluation and that was not much except talking! I am so excited! Now I have to find a doctor in CO that will administer the injections! We also got out NACD program today and it looks GREAT!!! I can't wait to get started!!!! Well off to bed I go! I am not feeling great and hope that if I get some good sleep tonight I will feel better in the morning! Thanks for the all of the thoughts and prayers!!!
Friday, September 26, 2008
We are back! We had a great trip and are glad to be home! Kenzie was happy to see her brothers and sleep in her own bed! Our evaluation went great and we will know in a couple of days what our plan will be for this treatment. I am very excited and can't wait to get started! God is so good! I feel like he continues to open doors for new treatments for Makenzie! We also did some blood work which will take a couple of weeks to get back. We put Kenzie on some new supplements based on her previous blood work from March. I still hate having her on formula because she is so high in some of her vitamins, minerals, and amino acids, and very low in others. There is really no way to control that on a "one size fits all" can of fortified sugar water! The people at NACD have a really good dietitian that will be able to help come up with a food diet that will better suit Makenzies needs. I have been wanting to do this for a very long time! Please pray for this! We also are doing IV infusions of a strong antioxident to help relieve some of the swelling that Makenzie has from her injury. She seems more alert and has been moving around more! Now we need to find a Doctor in here that can do the infusions because going to AZ on a weekly basis is just not going to work!!!! Well, it has been a long day and I think the bed it calling my name! I will post better info later but please keep praying for continued open doors and restoration for Princess Makenzie!! Thank You all!!!! God Bless!
Saturday, September 20, 2008
Ok, this is going to be short and sweet! Makenzie is doing well. She is still doing well with her G tube feeds and is also doing well orally. Still not a whole lot of volume but what she is eating she is handling well. We are heading back to Arizona at 0' dark thirty tomorrow morning and will be back on Friday. We are going to see a doctor for some IV infusions of an antioxident and then to NACD for a Neuro evaluation. Please pray for safe travels and lots of new and helpful information! Please also pray for the safety of my husband and kids that will be hanging out at home! Thanks for everything and keep praying! I will not have internet access so I will post details when we get back! Thanks and always Believe..... Prayer Works!
Tuesday, September 16, 2008
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Makenzie is so proud of herself! SHe is doing to well in therapy and at school!!! I also upped her feed today to 2 oz 3 times a day and she has done great! A little reflux but no vomit!!! Yeah Makenzie! Thank You Jesus!!! I posted some really cool video and some more pictures but am having problems posting them on this blog!? Please go check them out at www.dropshots.com/makenziesmiracle ! Drop a comment while you are there! All you have to do is type in your name and a note on the right side of the screen and hit enter! Easy peasy!!! I would love to hear from all of Makenzie's Prayer warriors!! We Thank You all for everything!
“Be joyful in hope, patient in affliction, faithful in prayer.”
(Rom 12:12, NIV)
Dear Heavenly Father,
We thank you for all the plans that you have for Makenzie We declare that your plans are more powerful than any challenge that she is facing. However, we know as Makenzie’s parents we have a role in seeing her fulfill her destiny. We ask that you would make it very clear to us what type of help and assistance she needs. We pray that if we need to make any corrections or changes to her schedule or life, that you would show us what to do. We ask that we would be led by your Holy Spirit and not by any anxiety that we may be facing. Our desire is to do what you are calling us to do. We ask that you would increase our ability to understand and hear your voice. We thank you that you are a God of all power and love. We thank you that you do not require us to do everything perfectly. Instead, you ask us only to be faithful.
In Jesus’ Name,
Wednesday, September 10, 2008
Makenzie continues to do very well!!! She is sitting better then ever! Her head straight up, a lot more balance, and a lot less flextion and head dropping! She is also still pushing up on her hands with her head up well. It seems like every day it becomes a bit easier! She has been walking more with her head up and not dropping it to take steps! She has been sitting well in a regular chair at school very well with minimal assistance! She is rolling a bit more but is still getting stuck somewhere in the middle of the roll. She is bringing her hand all the was up to her shoulders to push herself up on her tummy and has started to make a crawling motion in all fours She is also to my superise handling her new feeding schedule VERY well! She has thrown up 3 times but I will take 3 out of 21! We are going to up the volume a half an ounce tomorrow and see how it goes! She is also eating a ton better through her mouth! I don't measure all the time but I am guessing she is eating on average a half an oz 3 times a day! Tons better then a few tastes here and there! I am Amazed!!! God is so good! He is slowly casting the Mountian of Brain injury into the sea!!! YEAH GOD! To God be ALL the GLORY< HONOR AND PRAISE!!!!!
School has also been going well. She loves the kids! She gets to play play dough, paint, play house... the other kids cooked for her today and she ate what they cooked!!!.... play on the play ground... she loves the slide!!! They have a side-by-side slide that I put her on one side and hold her while I go down the other side! She loves it and has been walking to the stairs so that she can go again..with help of course! Her favorite time at school is circle time when we sing the Shake your sillies out song!!! We shake, jump, yawn, and pretend to sleep all to jump back up and shake some more!!! She loves it!!! By the end of the day she is worn out!!!
Well, that is all for tonight! Please pray that we can get back to feeding her stomach and get rid of this j tube!!!! It is looking more promising then ever befor but we still have a long way to go! PRAY!!! Pray for continued healing and restoration for Makenzie!!! She is doing so well!!! We can feel all of your continued prayers!!! We are so blessed to have all of your love and support!!! Thank you all for giving to the Lord through Makenzie!!! I am a life that has been changed because of it!! Thank You!
Friday, September 5, 2008
I hope for tonights update to be short, sweet and to the point as I am tired from lack of sleep last night. Makenzie is doing great. She is doing alright with the new feeding schedule. She has however vomited 2 times. I really believe that she has some Delayed emptying problems. There are a couple of things that we haven't tried for that so hopefuly next week we can start a medication that may help.
We had Pt at Childrens today and it went GREAT! She pushed the buttons on a piano about 10 times all by herself and some of them where on cue! She also lifted her hand up and spun the toy alone as well. Her therapist got her up on her feet and pulled her shoulders back and she took about 10 steps with out dropping her head which is huge!!! For some reason Makenzie thinks that in order to move he feet she has to put her head down. Today she didn't do that! YEAH!!!
When we got home I put her on the floor and she did great with pushing up. I took her and helped her hold her trunk up because her shoulders are not strong enough yet to hold all of her body weight. She pushed with her arm and I asked her to lift up her butt. She did!!!!! So I moved her hands up and she followed and moved her legs in a crawling motion!!! She is doing so great!!!!
I took the kids to sing Kareoke tonight and Celebrate our friend Jaydens birthday. It was a lot of great to be out and having so much fun. Well, thats about all for tonight. Keep praying! Prayer Works!!!!
Thursday, September 4, 2008
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We went to preschool again today. It went much better! She loves the other kids and really loves to "Shake her Silly's out"! She sat so good today and played with Play dough and in the water table. I think as the teachers get to know Makenzie things will get much better! I think this is a good thing for her! I am not sure if she will go all 4 days a week or just 2-3 but only time will tell.
We also started her new feeding schedule today. It is a lot more work but if it will help her feel hunger and stretch her tummy it is all worth it! She did well! 3 small boluses and no puke!!!1 YEAH! Thank you God! He is moving the mountian of Brain injury 1 boulder at a time!!! She did well at dinner and opened her mouth nice and seemed to enjoy it a bit! She also closed her lips a couple times and now has tounge movement to the left, right, and top! That is so wonderful!!!! We are so blessed! Thank You God!!!! And thank you all for your love and support! Keep praying!
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Wednesday, September 3, 2008
Wow it's been a crazy week!!!! Makenzie started school on Tues. It went ok. The school wasn't really prepared for Makenzie despite nearly 8 hours of meetings with Child Find and the school. Oh well. Hopefully it will get better. If not that is ok! I will just find a play group, gymboree or the church preschool or nursery so Makenzie can be around other kids her age.
We missed school today because Makenzie had a GI appointment. We just started feeding therapy and her therapist mad it a point to be there along with another OT from the feeding clinic. We talked about Kenzie's weight gain, feeding schedule, G and J tube preferences. Well,...... are you ready?..... Makenzie weighs almost 28 lbs!!!!!! She is over the 50th percentile!!! WOW!!!! Wanna hear some even more exciting stuff?........ We are going to start using her stomach again!!!! VERY slowly but we have changed her feeding schedule to accomedate her eating more food in her mouth. They also cut her feeds down to 10 hours a day with 3, 15 min boluses. Yeah!!! We are going in the right direction!!! She also argreed that the intensive program in VA woulg be very helpful to her! She is not ready yet because of the feeding schedule stuff but by next summer when I want to go she should be1!!!! To have Children's agreeing with this is huge because the insurance will want to be sure that we can not get help here in CO before they pay for services out of state!!!!!! YEAH!!!
In therapy Makenzie is also doing well!!1 Her head control continues to improve. She is lonking great in her trunk! It is getting much stronger and she is correcting herself to mid line much more often! Today I had her on the floor on her stomach. She was pushing with her arms, head up. I helped support her shoulders and asked her to lift her butt up! She did! Every time I would ask she would try! She never got all the way up on her knees but she still did try hard and the best thing for me was that she was doing what I asked without a whole lot of processing time!!! Go Makenzie!!!
Please pray for Makenzie's stomach! Pray that she will do well with the food in her stomach!! Pray that we can finalize all of the details for our trip to AZ and that we can get back to CA SOON!!! Pray Pray Pray for my little princess!!! We love you all!!!
Thursday, August 28, 2008
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Makenzie had another great day! She continued to push up while on her stomach. In PT today she was doing a GREAT job of isolating muscles! Exactly what we want the Neuro Suit to do for her! Thank You Jesus for leading us to Trisha and NAPA! I have postef some videos at www.dropshots.com/makenziesmiracle of her on her tummy.
We got everything ready for her to start school. She will start on Tues and are going to keep meeting with and ajusting her plan and services to meet her needs. We are going to give it a go until NACD next month and then we will re evaluate were school will fit into life at that point!
Well it is off to bed! I am getting pampered tomorrow and having my house cleaned! Thanks Cindy!! I can't wait to walk in with my white gloves on!! HAHA! That will last all of about 30 seconds!!! Keep praying for Makenzie! She has a lot of new stuff happening and seems to be making great progress over the last week!!! Thank You God for your faithful healing and grace!!!
Wednesday, August 27, 2008
Makenzie had a great day today! She had PT and OT this morning. She got a good massage and then we put on the suit. we really see great things happening in the suit. The hope is that she will form new patterns and increased strength while in the suit that will carry over while out of the suit. A few weeks ago Makenzie was brining her hands up on her stomach above her shoulders and pushing herself up. She really hasn't done that again until today! She was able to do it again and not only did she push up she was able to adjust her arms and hands while pushing leaving all of her weight on one arm! I am so proud of her and feel so blessed! When Makenzie does something and then stops it makes me upset. I try to remind myself that she has done that with so many things that over time have come to stay! For instance, her smile. In the beginning she would smile and then not smile for a week and now I can't really even remember the time when she didn't smile! (I do really but well.......you know) The same thing happened with her giggle. So I guess she will get there with the pushing and rolling the same way! When she learns something new she is so proud of herself! I am so proud of her! Thank You Jesus!
I talked to a lady at the feeding clinic in VA today. We will be having a teleconference evaluation for acceptance into the feeding program there in Oct. I am so excited. I am glad that we can do it here in CO and don't have to travel again! We started feeding therapy at Childrens on Tues. I hope that it will help until we can get to VA but really I am doing it for insurance reasons. I want to be prepared to tell the insurance companies that there is nothing in Co that will help Makenzie and be able to get them to cover the clinic in VA. Oh and Makenzie passed her 2nd swallow study with flying colors!!! We still can not do thin liquids because she did asperaite after 6 bited but she coughed and that is great. So we are clear for purees and nectar thick which would be like V8 juice! Yeah! We are not ready for juice yet anyways! One step at a time!!!!
Tonight it took me over an hour to put Makenzie to bed.She was so happy and she laid in bed babbling and laughing! I didn't want it to end and just wanted to stay up with her all night! She also rolled like crazy! That is one of her tricks! She will refuse to roll during the day but the second you climb in bed with her she does it with such ease! She is such a stinker!
Thank you all for walking with us and continuing to pray for Makenzie! As we wait faithfully on Gods healing not one of the prayers lifted up for Makenzie has gone unheard! Please keep praying! She is doing so well!! We are truley Blessed! Thank You!
Sunday, August 24, 2008
It has been a busy week trying to get back into real life after CA! The boys start school tomorrow! It has over all been a good summer. The boys did a lot of fun stuff but are ready to go back to school and be with their friends! We had a few last summer adventures this week. We went to Boondocks on tues and did bumper boats, go carts, lazer tag, mini golf, and of course arcade games! Makenzie loved watching the boys.
We have used the Neuro suit several times this week and have gotten really good at putting it on! It is alot more tricky then I though it would be. When we got home Makenzie was so loose. She really struggles with tightness in her shoulders and they were very loose at the begining of the week. Today they were however pretty tight. Both her PT's and OT feels like it was because she was handled for 3 days straight while we were in CA. She needs to get those shoulders lose and fast. It seems to be a lot of what is holding her back. Please pray that we can get details worked out to go back to CA SOON so that NAPA can help to loosen her up with the intensive therapy that she so desperatly needs! I am so upset that we did not find NAPA until after we got to FL because this clinic and its therapist are SO MUCH better then FL! Please pray for this! In the 2 days we were in CA we got more and better therapy then 3 weeKs in FL! I am bummed but excited to get there and see them help Makenzie! The biggest problem is going to be lodging. SO............... if any one out there that live near the airport in LA has any ideas let me know!!! I would like to be there before the end of the year! PRAY!
There is not much more to report other then over all we are doing well. Please keep storming Heavens gates for my little princess! Thank You all for your prayers and support! I have posted some more pictures at www.dropshots.com/makenziesmiracle Check them out! For those of you that can not post on myspace or bogger my e mail is firstname.lastname@example.org. Sorry I don't think I have ever posted that befor! We would love to hear from you all!!!
Tuesday, August 19, 2008
We are back! All I have to say is WOW!!!!!!! It was a great trip! We all made it there safely on Thurs. and off to the Clinic we went on Friday morning! It was absolutly amazing! We observed the clinic in the morning and in the afternoon Makenzie got a bit of therapy. Well, really she got therapy all day because all of her therapists were there and couldn't keep their hands off of her! The owner of the Napa Institute and the creator of the Neuro Suit was GREAT to put it very mildly! We also met some very wonderful people that also walk this healing road along side us! We are are crazy I have decided! There is nothing that we will not do to help our kids! It is so nice to meet and know that there are others out there that are doing a lot of the same things we are and getting great results as well! On Sat we had an all day training on what the Neuro Suit is and how to use it! All of my therapists got in the Suit and were amazed! Makenzie did so well and was such a trooper!
Of course we had to play a bit! We went to the beach and out to a great little local place on the beach for dinner! Makenzie loves the beach! We also sat by the pool and had some dinner and visited one night and back to the beach after going to Church on Sunday at the Dream Center! Thank You Lindsey for helping us find it! LA is crazy!
We are of couse back to therapy tomorrow and the last week of Summer break for the boys! We will be heading to AZ next month to meet with the people at NACD and get a program for Makenzie! She will be starting school in a couple of weeks but I am unsure wether or not she will continue once we start the program. Doing 2-4 hours or therapy a day plus 2 hours in the suit plus up to 4 hours of NACD and school..... well you get the drift! And no, I have not forgotten that I have 3 other kids!!! Please pray for a good schedule so that our days will run smooth and pray that God gives us the support to keep up with the pace of our business! This is going to be great for Makenzie! Please also pray that when the time is right that we will be able to return to CA to complete a 3 week session at NAPA!
Well that is all for tonight! I have traveled all day, unpacked, cleaned the house, and done the laundry, and now I am going to go fall into bed. I will post pictures and more details later. Sorry I rambled but my thoughts are a bit scattered right now! Just wanted to let everyone know we made it back safe and that everything was GREAT!! Keep Praying! Believe... Prayer works!!!!!
Wednesday, August 13, 2008
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Oh, what a day!!! Makenzie had a swallow study today at Children's and other then scheduling issues.....LOTS OF THEM..... what a headache...... it went great! She has been cleared completely for purees and nectar, which is close to liquid. they want to do liquid only in therapy for now but that is ok! There is no way at this point that she will eat and drink enough to get rid of the tube yet so I am in no hurry to start juice and the like! We are still waiting for the Feedng therapist to call and scheudlule so we are in a holding pattern. Makenzie has been doing a much better job with eating! She is now off of the pump for about 10 hours so that gives her lots of time to be hungry so I think that is helping. She is also still slowly gaining weight! We ran into her rehab doctor at the hospital today. She saw her last at the end of June and the first thing she said is man she is gaining some weight!! It is so obvious! She looks so healthy!!! I still am in shock that I don't have to worry about every last drip drop! Yeah God!!! Way to be Makenzie!!
Makenzie has also decied that she would like to learn how to bring her hands up above her shoulders and push up with her arms!! It is so cute!!! God is so good and continues to provide!!!
We are leaving tommorrw afternoon for CA!!! I am so excited!! Please pray for safe travels and that the boys will also have fun and stay safe!!! This will be the shortest trip that Kenzie and I have taken! I even got all of our stuff in 1.... yes you read that right...one... bag!!!!!
Thank you all for your thoughts and prayers! Keep storming Heavens Gates for Miss Makenzie!!!
Monday, August 11, 2008
I have been following a beautiful little boy that recently lost his battle with cancer. At Sully's celebration of life his uncle said a few very helpful words. Sully's Grandpa has a Caring Bridge site and posted his words there. Even though Makenzie doesn't have cancer I found his words very relavent! Please read this! I think that it applies to all of our lives! Please also pray for The Farr family as they grieve the loss of their 15 month old little prince! We almost walked that road and I can not imagine the grief and pain they are feeling right now! Thank You!
August 7, 2008
There is a very popular clothing line out there that sells with the slogan, "Life Is Good." I have always been a big fan of both the slogan and the simple but somehow poignant stick figure illustrations on the shirts, hats, and other products. Most of you have probably seen the ones I'm talking about. I know Jason at least at one time had a Life Is Good shirt, and I've got a few, which I've proudly worn, boasting about my hobbies in stick figure fashion. But times like the last 13 months beg the question, "Is life really good?"
In all honesty, the shirts have begun to rub me the wrong way. I want to take exception to them. The images, activities, and emotions depicted on the products are good: gardening, fishing, hiking, playing ball, reading a book, camping with family, going for a run, etc. But those are only part of life. Those are the good times. Perhaps the shirts should read, "Fishing is good." "Picnicing with family is good." Or "Football is good." Is life as a whole really good?
I want to look at what happened to Sully and say, "I object. Life is not good." Human life, little Sully's life, is sacred, and any existence that ravages my little nephew with Leukemia is not what I would call good. But his smiles are good. His pattycake is good. His grunts, kisses, and laughs are good. His head on your shoulder is good. And then I want to say, "Life is good."
James, the brother of Jesus, wrote, "Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." All of the good things that make us say, "Life is Good," and that have made that clothing designer wealthy, are from God. God is good, and he gave us so many wonderful gifts in little Sully.
I can buy that, but I can't buy that life is good. Life is decidedly screwed up. One of scripture's themes is how screwed up life is! And in the midst of Sully's suffering, especially during the last two days, I wanted to shake my fist at God and say, "Not only is life screwed up, but you're screwed up since you're in charge of it!" Sully couldn't possibly have earned his suffering. He was diagnosed as an infant. The circumstances takes away all of the Christian excuses for suffering, doesn't it? This is the battle that so many have been in or are currently in.
Yet it is in the midst of such wrestling with God, Jesus grabs me by each ear. He cups his hands around my ears, and he looks me in the eye, and he says, "I know exactly how you feel. I would give anything to end little Sully's suffering, and I would that I could explain all of it to you to your satisfaction. But all I can offer you is my own experience."
Isn't that really what brings us comfort at difficult times? Having someone there, especially someone who is strong and has gone before us to help shoulder the burden? Someone we can go to who knows exactly how we feel and who can cry with us and strengthen us with hope for tomorrow? Jesus does exactly that for us today.
We turn to him because he, like Sully, had done no wrong, had done nothing to earn his suffering. He was an innocent victim. He was in such agony that he was sweating drops of blood in the Garden of Gethsemane, pleading with God to remove the suffering, to provide another way. He, like us, must have felt that this was an odd brand of justice and mercy to suffer so unjustly and relentlessly at the hands of darkness.
The writer of the biblical book of Hebrews wrote, "During the days of Jesus' life on earth, he offered up prayers and petitions with loud cries and tears to the one who could save him from death, and he was heard because of his reverent submission. Although he was a son, he learned obedience from what he suffered and, once made perfect, he became the source of eternal salvation for all who obey him."
How many times did Tabitha and Jason write "Pray!" with an exclamation mark on their website. How any thousands of people were doing just that. People of great faith, but to no avail. Or at least that's how it might appear to some today. Yet the writer of Hebrews says that Jesus' prayers were indeed heard. So Jesus can cup his hands around our ears as we lay our complaints and objections before him and can say, "I know how you are feeling," hug us, and tell us everything will be alright. He has been where we are, and he can testify that everything is indeed alright and will be alright. It was through Jesus' suffering that he brought salvation to all of us. His suffering prayers were heard and answered to the benefit of all of us. At the time of his trials, and certainly at his death, his prayers appeared to be unanswered. No prayer offered for Sully by any person of faith was offered in vain. All of our prayers offered out of reverent submission to God were heard, and God is answering them still in wonderful ways beyond our ability to conceive today. This is what Jesus tells us as we lay our struggling hearts open before him.
We will perhaps never have the answer to the question, "Why?" Yet we can know with certainty that our prayers, and ultimately, Sully's life, were not in vain, that God will turn the evil of Leukemia, of doubts and fears, and the pain of suffering upside down and will accomplish something greater than we can ever hope or imagine if we will lean on him today. He will walk and talk with us from today forward and can handle our questions, our criticism, and our doubts. Only let us insist on turning TO him rather than AWAY from him. He is a partner in our suffering, and though he will not put an end to it, and there will be more after this, he understands our doubts and wants to be there for us as one who has been there himself.
Because of Jesus' great love and his own suffering on our behalf, we can do as he did—as the apostle Peter writes in 1 Peter 2:23, "When they hurled their insults at him, he did not retaliate; when he suffered, he made no threats. Instead, he entrusted himself to him who judges justly." In our suffering, let us follow Christ, he who holds us as we wrestle and weep, and entrust ourselves to our just God, even when we don't understand.
Job, in the midst of his great suffering said, "I know that my Redeemer lives, and that in the end he will stand upon the earth." Our God will redeem Sully's suffering and the suffering of those who love him and his family, just as He redeemed his own suffering and the suffering of his Son. He who loved us enough to put himself through a lifetime of suffering, will not leave us in our suffering.
The apostle Peter also wrote, and it is my conviction, that "the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast."
Thursday, August 7, 2008
Photo Sharing - Video Sharing - Photo Printing - Photo Books
Makenzie did well today in PT! It started out kinda rough though. Her left leg seems to still be bothering her. I had her PT look at it and there is nothing wrong with her joints and she didn't feel any muscle spasms. With touch to all parts of her leg she did not show any sign of pain but when you try to straighten it out she objects. She however will staighten it out herself. I ran into another PT from my church and he didn't really know either but said that she could have regained more feeling in her leg and that it either hurt or felt weird! Wouldn't that be great!!!!!! She is really starting to push with her arms! She may not be reaching yet but she sure does know that her arms and hands are there! It is coming!!!! Her sitting and head and trunk control continue to improve as well! Yeah God and Yeah Makenzie! You are such a fighter!!!!
She also had a great ajustment at the chiropractor! Snap crackle pop!!!! Well that is about all for now! Please keep praying! For her leg. For our trip next week. For Makenzie's 100% restoration! Storm thoughs Gates! Believe.... Prayer Works!!!!
Wednesday, August 6, 2008
Photo Sharing - Video Sharing - Photo Printing - Photo Books
Makenzie has had a good couple of days. She has done well in therapy and continues to gain weight! In fact a bit too much!!! She had to have her feeding button changed yeaterday because it was to small and rubbiing her and causing irratation and a bit of infection! It was along day, but we made it through!We got some antibiotics and cream and this morning it looked MUCH better! Please pray that it heals and doesn't turn into anything worse!!!
I did notice today that her left leg seems to be bothering her! She does not want anything to do with having it staightened out. She will staighten it but won't let anyone do it for her. We put her in the walker tonight and she stood on one leg and wouldn't put her left leg on the ground. Please also pray for this as she is doing so well with standing and taking steps in her walker!
We are leaving in a week for California! I am so excited! We are going to be able to met some great people there and hopefully form new friendships!!! I can't wait! I have heard nothing but wonderful things about this clinic and am sure I am going to be sad to leave! If it is as good as everyone says I hope to be able to do a full 3 week program there sometime in the future! We are going for 2 days of training and will be able to start our own version of suit therapy here at home! ALL of her therapist are going to be able to go, so everyone will be trained on how to work with the suit. YEAH GOD!!!! Even though sometimes it is hard to see God working in our lives He sure is moving mountians in Makenzie's life!! Please pray for safe travel and that Makenzie and I will stay well! 2 of the boys have a cold! Pray that Kenzie doesn't get it!!! Please keep storming Heavens Gates for Makenzie!!! She is doing well but has a long ways to go! The going seems kind of slow right now but I know that God is still here! He loves us and will never leave us! Thank You so much all of your prayers and support!!!
I have posted some extra pictures and video at: www.dropshots.com/makenziesmiracle
Check them out!
"But he said to me, 'My grace is sufficient for you,' "
(2 Corinthians 12:9 NIV)
Dear Heavenly Father,
You have not said that your grace was once sufficient, nor that it will be sufficient at some point to come. But, you have said Your grace is sufficient for this family, now. That is a reality of this moment. It is not something we have to wish for, long for, or hope for. It is something we already have even as I pray these words. Lord, help us to always see the provision we already have from you. Forgive us for not believing in or receiving the blessings that are fully ours. No matter what our circumstances are today, show us how to walk in your abundant blessings and sufficient grace.
In Jesus' Name,
Friday, August 1, 2008
So I weighed Makenzie today, She is up to 26lbs!!!! I called her doctor and had him putit on the growth chart and she is at the 10th percential!!! So I really never thought I would get to say this but....... drum roll please....... we are decreasing her intake!!!! Her weight and height are perfect! I am so proud of my little princess!!! Yeah God!!!
Makenzie also continues to do well in therapy both with her therapists and her mommy! We went to the outdoor mall today and played in the fountian. She loved it! Every time the water would splash her she laughed and laughed!
We are all ready to go to CA in excactly 2 weeks! i can't wait to get her back in the suit and getit here for us to use tons!!!
Please keep praying for Makenzie!!! Also please pray tonight for Makenzie's Paw Paw as he had major surgery! He was moved out of the ICU tonight and into a regular room and is doing very well, but has a long road to healing ahead of him! Thank You for all of your love and support!!!! Pray! Believe,,, Prayer Works!
Sunday, July 27, 2008
Wow, Sorry it has been so long. I has been a bit busy around here these days! Makenzie is doing well! She got her new walker and has improved a bit every time she gets in it. We finally got a chance to do water therapy on Friday with Makenzie's PT. She did so good! She was kicking her feet and was able to move her legs on command to her therapists hands! All while Josh was busy doing front flips off of the diving board!!!
We had a family picnic on Sat. at the farm where my grandma grew up! I was hot but so much fun to see where she was born and grew up! The house is 88 years old and was really small. My grandma came from a very large family and it was so hard to imagine craming all of those kids in that little house! The last time we had a picnic there was when I was about 8! It was fun to be there with all of my family! It was also great to see and hear froom so many people that continue to pray for Princess Makenzie! Thank You All!
We are leaving for California on the 14th! I am so excited! I still have to get all of the Miracle Flight paper work together tonight so that we get it faxed in time for them to find us a flight! Thank You Miracle Flights for makeing all of these trips possible! With out this organization we would be much more limited in where we could go to get treatment for Makenzie! THANK YOU!!!
I have also been researching a organization called NACD. They deal with Child Development. I ordered a CD lecture and it was GREAT! There was so much information and all 6 hours were packed with all kinds of very important suff! NACD evaluates kids from coma to briliant and then gives parents a protocal on how to simulate the child at their level to help the brain reconnect and reorganize! I am in the process of filling out the paperwork to have an initial phone eval befor going to AZ (AGAIN!!!) in person! I am so excited to have all of this new information and another great treatment option!!! How to stimulate Makenzie has been a stuggle for me and some very pointed direction will be GREAT!!!
Well I guess I will have to cut this short tonight! Makenzie is very restless and I think to get her settled I will have to be off to bed! I guess a little extra sleep can't hurt! Keep praying!! Prayer Works!
Sunday, July 20, 2008
Kaleb has been asking for a picture of him and Makenzie for this blog. So here it is! She is looking a bit chubby! Yeah!!!! Not much happened this weekend. We went to the pool a few times, played in her new walker, went to the first service in out new church building, went out to lunch with some friends we haven't seen in a long time, and played out side in the water. Makenzie thought it was grat to be sprayed with the hose! Her feeding tube seems to be feeling a bit better! Please keep praying that this would continue to heal quickly as it is causing her a lot of pain. Well that is all for tonight. Keep praying for Miss Makenzie!
Friday, July 18, 2008
It only took them about 3 weeks and now it is here and ours to keep! It is amazing how much Makenzie has improvered in thoughs few short weeks! She did great with taking steps and bearing weight! I am so proud of her! Her button is a bit red and seems to be causeing her some pain! Please pray that this would get better fast! We had a crazy week this week but I don't see much on the calender for next week but normal therapy and going to the pool! Keep praying for Makenzie and her recovery! Got to get some sleep! Cranky little girls are tiring!
Tuesday, July 15, 2008
We got the final details taken care of for our trip to California! We are going to pick up Makenzie's Neuro Suit! Two of Makenzie's therapists are going to come with us to be trained with me on how to use it so that we can do suit therapy at home instead of spending thousands of dollars and three weeks two-three time a year to go to a clinic! I am so excited! We are going Aug 14-17th! I can't wait to get Makenzie bak into the suit!
I also taked to the intake person for the Feeding Clinic in VA today! She will be calling tomorrow to set up and eval in Sept! We will be traveling VA for this as well. Hopefully they will accept her into their program and we can do some very intense feeding therapy next May! The program is 8-10 weeks long so I am hoping to find a month to month apartment to rent and have my boys come out the last 4 weeks! This clinic has produce very good results in tube fed kids and has come with wonderful reccomendations!
I scheduled another Swallow study in Aug. as well so that we can have an updated one to bring to our evaluation. Please pray that she does well for this! Last time she did ok. They didn't get many swallows as they had her in a weird chair, between 2 peices of x-ray equipment, with like 8 people standing around her...... very intemidating! What she did swallow there were no signs of asperation or pooling! This time we hope for more swallows with the same results!
I set up a site to download Makenzie's pictures onto. It is very easy to use and you can post comments without signing in to the service! Please check it out at www.dropshots.com/makenziesmiracle
Makenzie had a great day in therapy. We got her to continue to bear weight into both arms and she sat well today. She is also doing really well getting her hand above her head to roll and putiing her head up with weight into her shoulders on her stomach! She is doing so well!!! Please keep praying! God is Good and Prayer works!!! Believe!
Sunday, July 13, 2008
Here are a few pictures of Makenzie sitting! The really special thing about these pictures is that she had both her right and LEFT hand down and bearing weight! Yeah God!!!
HBOT is still going well. It seems to mske her really tired though! We have also had some good results with changing her feeding schedule around. I have been feeding her a couple time a day and she has been eating 1-2oz!!!! GO MAKENZIE! Our goal is 4 oz so we are bout half way there! At 4 oz we will reasses and take more tube away and try a new goal amount!! Pray that she continues to do well and improve with her oral motor and feeding skils!
Makenzie had a great Party! She had so much fun! I can't wait to see what God has planned for Mis Makenzie in the upcoming year! Looking back at where she was last year I feel very blessed! On another more human side I still ache everyday to have Makenzie back the way God gave her to us on July 11th 2005! The vomit, feeding tube, therapies, and doctors visits still consume most of our families life! We continue to push forward one step at a time but we ask for you to keep storming Heavens Gates for Makenzie! Please don't give up! Don't forget! We still desperatly need all of your prayers and support! This journey is far from over! Life gets a little easier every day but is by far no where near the way it was a little over a year ago! Please, please, please keep Makenzie in your prayers! She still needs as many as she can get! Thank You all! The God be ALL the Glory!
Here are some pictures of her party!
Friday, July 11, 2008
Makenzie is 3!!! Last year we were in Pheonix for her birthday. Last year I let Makenzie taste a small lick of frosting as she had just started to be able to move food to the back of her mouth. This year she will get to eat cake! Modified a bit with some milk but none the less she can do it!!!!! Last year she was not smiling or laughing. This year she will be with all of her friends and family with a big smile on her face! Last year she could have cared less about toys and this year I went to pick out presents that I knew she would LOVE! She still won't be able to blow out her candles but she will look at them in wonder! Last year she wouldn't have even noticed the candles! I ordered her a Tinkerbell Cake because she loved the Peter Pan Ride at Disney World! I can't wait to see what she thinks of a big bunch of balloons! As much as I wish things were different I can't but be so thankful that I get to celebrate another year with my princess! Thank You Jesus! To God be ALL the Glory!
Makenzie has been doing great in therapy! She has continued to push herself up with her arms on her stomach ans is still doing well with sitting. We had a new OT start on Weds. She is great and I think she is going to be GREAT with Makenzie! We went to our feeding eval and I was very dissapointed, to say the least! They were very unhelpful and told me nothing that I didn't already know! Their grand conclusion was that Makenzie needs feeding therapy! Gezz really! So I went to her GI and we talked about her feeding schedule. We are going to cut 2 hous off of her feeds per day and he wants me to try and feed her 4 oz oraly. When we get to that new goal we will begin to add more oral and cut more tube feeds untill we can slowly widdle it down to her only eating through her mouth! Boy that will be a day for another party!!!! I am so greatful that we have such a wonderful GI doctor!
Well of to make formula and get to bed! Thanks for you thoughts and prayers!
Monday, July 7, 2008
No, not Makenzie! Not yet, but its coming! I don't have a lot of time but I wanted to let you know that we are now pros at sitting in a tin can! (hyperbaric chamber) We were able to get in 2 times today for a full hour! It dosen't bother Makenzie at all anymore! Thank You Jesus! It is too soon to say but we have already seen some new stuff! Today Makenzie put her arms under her and pushed her whole chest and head up! She was so proud with the bigest smile and a few giggles!!! I am so proud of her and more importantly thankful to God for his grace and blessing!!! To God be ALL of the Glory!!! His timing is always so perfect!!! She also has not vomited since we started the HBOT!
We go for our feeding clinic eval tomorrow morning! Please pray that God would use theis to move Makenzie forward with her eating! Pray that he would use all of the doctors and therapists to heal Makenzie! Pray, Pray, Pray! This is very important to me and it would be so great to get her off of this tube!!! She can do it! Pray that we can come up with a good plan to get Kenzie back onto bolus feeds in her stomach with out pain and eating more by mouth and being able to decrease her tube feeds!
Thank you all for thinking about and praying for us!! Keep praying! God hears and answers! We see it every day!!!! THANK YOU! We are so Blessed!