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!!!
Monday, September 29, 2008
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!!!