Wednesday, November 22, 2006

My Christmas Wishes!

I have had many friends and family ask what Makenzie would like for Christmas. To make things easier I put together a list of toys that she would love and could play with by herself!

Makenzie has become so aware and LOVES to play!!! She however is not able operate most toys that are bought from the store. I would love for her to have some adapted toys that she can play with all by herself! One of our biggest goals for Makenzie is for her to interact with her environment and not just react! These toys will not only be fun but also aid in Makenzie's healing and development. Please feel free to e-mail me at makenziesmiracle@comcast.net with any questions and thank you so much for your generosity this Holiday season!

Dalmation Chase
Air-tivity Ball Popper
Gazillion Bubbles
Water Fall Water Toy
Go Go School Bus
Mini Stunt Remote Control Car
Singing Pizza Elmo
Giggles & Coos
Basset Hound

Friday, October 6, 2006

Week 3

Disneyland 2009 9-27-09




Disneyland was GREAT!!! I don't care what anyone says, I still think it is the most magical place on earth!

We went with some good friends and all of the kids did wonderful! We were able to ride ALL of the kids rides. Makenzie loves the stimulation! Her favorite ride was the Matterhorn! For those of you that have never been.... that is a ROLLER COASTER! She belly laughed the whole time!!! I was amazed!

We stopped for lunch and Makenzie ate too! That is the best feeling ever!

It is amazing also to see the changes in Makenzie since we went to Disney World with the whole family in July! Not only did she look at everything during a ride she followed specific things until they were out of site! AMAZING!!!

We left at about 5:30pm and headed back home. Julie and Joey stayed the night and we had a great time just chatting. Makenzie had her first sleep over!

This has been a great trip! We have done therapy but we have also had a GREAT time as well! We have been to the beach, the aquarium, I got to go to dinner alone with friends, and Disney Land! We have seen many friends and as our time her draws to an end I am starting to miss them already!

Please continue to pray for health and healing! Makenzie is doing great and I pray that this progress continues as we carry it over at home!

Day 11 9-28-09

HAPPY 3RD BIRTHDAY SAVANNAH!!!!!


Savannah is one of Makenzie's new friends!!!


Monday mornings! My poor girl just looks at me with the I can't believe we are here again look! well I have good news for you Princess Makenzie... this is the last Monday!!!

I know that Makenzie can not do Suit therapy every day for the rest of her life but I am so torn! The Napa Center is amazing. The people here new and old have been so great! Unlike all of my other trips, with the exception of part of our Florida trip, I am comfortable. The only thing that is missing is my boys and extended family.

I really do love all of you normal people (LOL Is normal even possible!?) but I have met some truly amazing people here in CA. People who get it. ALL of it! I have had so many conversations this week that have made so much since. The support has been amazing and fun! There are not too many people I know that understand the accommodations it takes to bring Makenzie to a place like Disneyland. Well, here I got to be part of understanding that for my friend while she understood for me. How many people find it fun to stay up eating pizza while enjoying a 2 way conversation about new seating systems, stem cells, and modified vans? I don't know many! In 4 days it will be gone. I will go back to being on the Internet and telephone. That part SUCKS!

I miss my kids, I miss my bed, I miss my life. I don't miss not having the connections I have found here. On top of the fact that I didn't get to see one of my best friend's who is only 6 hours away because she was really sick! This was our chance and it has now come and gone! CRAP!

As I said before, God has plans that for everything! None of this is just about Makenzie. I try to remind myself of that often. Yes, we came here for therapy but we are leaving with so much more.

Kenz is still eating really well and she did a great job standing as well!!! She is doing so well!!! The connections she has made with these new therapists in the last 2 weeks are also so amazing!





Please keep praying for health and healing! We are almost done! I had to wipe and suck Makenzie's nose tonight which has me worried! We are SOOOOO close! Please say an extra prayer that we can stay healthy!











Day 12 9-29-09




Well Makenzie has a cold! She has a very stuffy nose but she was soooo happy today! All smiles and tons of laughter. Yes, we still had some crying but over all so was in the best mood ever!!!!!

Makenzie is looking so good! She is doing great in all fours and her standing looks great! We are going to have graduation tomorrow because one of the therapists will not be there on Fri. I am so excited to hear what Makenzie's therapists have to say about her progress!

Even though Makenie is congested she did pretty good eating today. She wants salt! Cheetos are her favorite but she is also really liking avocado and cottage cheese with a bit of sea salt! The face she makes when I try to give her anything sweet is priceless! That is just not normal! (ladies that is for you and your long line of ______) (Sorry inside joke I couldn't help myself!)

I had some potentially really good new fall into my lap today about further treatment for Makenzie and it has me overwhelmed at the moment. I am not going to go into details as there is some footwork that needs to be done first but I am going to ask for prayers on making the right decision and listening to God when making this decision. If is is meant to be God will make it happen! If not that will be ok to... I guess.. JK. Just Pray!

Please also pray that Makenzie would get over this cold like NOW!!! Pray for continued health and healing! Pray for my boys back at home who are missing their mommy! Pray for safe travels home as our trip back is approaching very quickly!

I forgot my camera at NAPA today so I don't have pictures from this morning to share but I do have a treat that was e mailed to me today! The pictures in today's post were taken during the first week of therapy by the grandmother of one of Makenzie's new friends! Enjoy!!


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Photo Sharing - Video Sharing - Photo Printing



Photo Sharing - Video Sharing - Photo Printing


Day 13 9-30-2009


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Day 13! WOW! I can't believe we are almost done! This has been beyond a wonderful experience! Makenzie has grown so much in the last 17 days! We have stayed so busy and I am starting to wear down! I can only imagine how Makenzie feels but I am sure it is about the same!


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Photo Sharing - Video Sharing - Photo Printing


Today was another great day! Makenzie is doing so well! She started the day of with some decongestant and ended it with no congestion at all! Thank You so much for all of the prayers for health! We are truly feeling them tonight!


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As I watched Makenzie today I could see very clearly the areas in which she has improved! First was the strength in her shoulders and arms! In all fours she is taking weight through her arms, shoulders, and hands, without her shoulders giving out! WOW! She is not pushing all of the way up on her own yet but as she builds up those muscles she will! She stood in the spider cage today for the first time since about day 3 and she looked so much better! She took weight through both feet evenly with out pulling up her feet for much longer! Her head control is improved and her flexion has decreased a ton! These are all of the baby steps she needs to continue to move forward! I am so proud of my baby girl!!!


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2 days left! Pray they are good ones!


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Day 14 10-1-2009

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The NAPA Center is AMAZING!!! We only have one day left! I am tired! I feel like I am getting a cold and I miss my kids but I am so sad at the same time that it is time to go!!! I am having a really hard time putting my feelings into words right now and I don't think I am even going to try.

I have a lot to do tonight as Julie and Joey are going to come over after therapy and hang out one last time before we leave. This is the part of trips like this that stink. I wish I could have the best of both worlds! Too bad life doesn't work like that!

Thanks for all of the thoughts and prayers! Pray for a safe last day and trip home!!! Believe... Prayer works!!!!

Day 15 10-2-2009

I really hate goodbyes! It is so hard!

Today was our last day at the NAPA center! Makenzie had the best day yet and went out with a BANG! They worked her hard and then we had a bit of time to just play!!! She loved it!

She jumped in the spider cage with help! She started really high up without her feet on the ground and she thought that was so much fun! Makenzie LOVES movement!


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Photo Sharing - Video Sharing - Photo Printing


Then we lowered the bungies so that she could touch the ground. She did much better then I thought she would! This kid ALWAYS amazeses me! She stood up SOOOO straight! At first she was way up on her toes but as she realized she was in control and it didn't hurt she came down onto her whole foot!!!! WOW!!! She also did a great job of lifting her WHOLE trunk up when she fell! AMAZING! She has gotten SOOOO strong! Then we asked her to jump. Guess what ?..... SHE DID!!!! Now she didn't really make it off the ground but you can see in the video that she is bending her legs and trying to lift her feet off the ground! I am just in awe at the healing that has happened in the last few months!


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Photo Sharing - Video Sharing - Photo Printing


She also got to fly again! She did a MUCH better job of getting her head up! So proud!!!


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Photo Sharing - Video Sharing - Photo Printing


After our goodbyes at the center Julie and Joey came down and we hung out! I did a bit of packing and then we took the kids to the beach!!! They BOTH loved it!!!!! It was so much fun to stand next to Julie on the beach. Another mother, another friend, on the beach, with our belly laughing kids! I am sure it was a site to see but I sooooo wish I could just make time stand still for a while!

After our adventure in the sand and surf Kelly and her son joined us for some more socializing. Then the goodbyes! TEARS!!! I am so happy tonight because I feel so blessed to have spent so much time with these wonderful women but I am sooooo sad that I will have to continue this friendship from hundreds of miles away!!!

We will be back. I know the goodbyes aren't forever but it still hurts on a very deep level! I think that I am denial that I am really leaving in the morning! I have the sweatshirts and long pants out ready for a change in climate, I can't wait to see my boys, but I am in denial that I will not get up in the morning to start my day with a cup of coffee at the center with Julie, Joey and the rest of the gang! Summer Camp is over! LOL!!!!

Pray for peace, safe travels, and as always continued healing!!!!

Home Sick Home 10-3-2009

We made it!

Our flight home went well. We were delayed about an hour and got home around 6pm. I was a long day but I think I can say with much certainty that we are professional travelers!

Makenzie was so happy to see her brothers and the first thing they had to say was how proud they were that she could eat Cheetos!!! Kids!

Makenzie did not stop laughing from the time we walked in the door until the time I layed her down in bed! She loves her brothers so much!!!


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However, most of us over here are now SICK!!! I have what feels like ahead cold. Makenzie has all but gotten over her cold, my oldest missed to days of school with a fever and exhaustion(had him cultured for flu with negative results), and now I have one with a fever and vomit! Back to reality!!! I guess I will be taking him in for a culture in the morning!!

Please, please, please pray for health! Makenzie worked so hard and really doesn't need to be sick right now!!! I am going to head to bed as I am exhausted but a HUGE thank you for keeping us in your thoughts and prayers!!!! They mean so much!!!!

Believe... Prayer Works!

Friday, September 29, 2006

Week 2

Here We Go Again... Day 6 9-21-09

Mondays are hard!!!

As yesterday was winding down I started to get anxious about the morning! Unlike last Monday, I knew what today would bring! Crying, and lots of it! I know that this is so good for Makenzie! She feels so loose and she is doing really well with tall kneel, all fours, and standing! That doesn't make watching it any easier! I am tired! If I had to guess, it is not physical exhaustion, but emotional.

Sunday Makenzie and I didn't change out of our jammies until 3pm! We ran to the store and picked up a few things for the week and then came back took a shower and put Kenzie to bed. It was a really nice relaxing day!

I got Makenzie some pudding and a few other smooth things. Why? Makenzie has been vocalizing when I eat and wants to EAT!!! When we were at Chilies in Long Beach every time I would take a bite she would follow the fork to my mouth and make a sound. I asked her if she wanted a bite and she gave me a huge smile! I told her she had to tell me with her voice and she did OVER and OVER! She did it again last night when I was eating dinner! So I have started giving her small bits again with a TON of success!! She is not consuming a lot of food but she is very receptive about eating and seems to enjoy it which is HUGE! Feeding her has always been a fight! She has never WANTED to eat! WOW!!! Go God! Go Stem Cells! Go IMOT, Go Tomatis, but really all that needs to be said is THANK YOU JESUS!!!

Therapy started off today kinda rough this morning. Makenzie knew the second we walked in the door that she didn't want to be there!

She cried.... and cried.... and cried! I have noticed that the first 2 hours are the worst. After that it seems to get much easier.

After stretching and putting on the nuero suit they put her on the treadmill. I didn't feel the need to take anymore agonizing pictures or videos of that activity! I think that is by far her least favorite activity. This doesn't make since to me as she loves to walk. Who knows!

Then we moved onto crawling. They made a ramp for her and had her crawl up it. Even threw all of the crying she looked GREAT! She still doesn't want to hold her head up but she is doing a ton better putting weight into her hands, arms, elbows, and knees without extending her hips and legs! Go Kenz!


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Photo a>Sharing - Video Sharing - Photo Printing


Then she worked on sit to stand using the wall ladder. She did great with this as well and was able to push with her butt and legs with her hands on the ladder above her! She even pulled her head up on her own!


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Photo Sharing - Video Sharing - Photo Printing


During our short break Makenzie and I played in the ball pit! She loved it!


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After we worked in the cage on more sitting and weight bearing. She also continues to well lifting weights with her arms and legs!


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Then standing! Today she got to stand with her buddy Joey! They had sooooo much fun playing the drums together!

Look at them both looking at each other!


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Photo Sharing - Video Sharing - Photo Printing


On to Tomatis we went. They did a ton of swinging with Makenzie today! She did really good and seemed to enjoy most all of it!


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Photo Sharing - Video Sharing - Photo Printing


Thanks so much for hanging in there with us! We are having a GREAT trip! Please pray for continued health and healing!! Believe... Prayer Works!


Day 7.. 9-22-09

We are HALFWAY done already! WOW!


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Makenzie has been such a trooper! I am so proud of her!!!


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She had a great day! Not as much crying today! YEAH! I hope that continues!


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The really cool thing is that she is still eating REALLY well! She has been taking about 10 bites for me 3 ish times a day with NO coughing or gagging!!! This is about 30 more bites of food then she has taken in one day in a really long time! The best part is that she WANTS to eat! She has had a smile on her face every time! This is COMPLETELY new! Normally I fight with her the whole time!! I am so excited!!!


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I have been incredibly tired the last few days! I was talking to a friend that has taken her child to Napa a couple of times and said that she felt the same way! It was so good to know that I wasn't crazy! This has just taken a ton out of me! I feel great during the day but man when we walk threw the door in the afternoon I am done! I guess I need a coffee on the way home! LOL!


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Makenzie's therapists are flying in tomorrow to hang out with us and see how Makenzie is doing! I am sooo excited! I miss them so much! It is crazy how much a part of my families life they have become! I love it!


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Makenzie is sleeping well! I fell asleep with her from 6pm to 9pm and now I am wide awake! AHHHHHHH! Oh well! Thanks for praying! Please keep praying for health and healing! Pray that Makenzie would continue to do awesome and that she would continue eating! As I was hanging out tonight with God I asked for a few specific things. I try not to do this often as I know that God has a plan and will heal Makenzie in the perfect way in the order that is best for his glory and for Makenzie but I (the human mama bear) really want to see my beautiful, smart and deserving daughter, be able to reach and play, hug, hold things, and maybe even hit her brothers when they are bugging her! LOL!!! So tonight my prayers were for Makenzie to get a lot more movement in her hands and arms! That she would be able to reach and grab. That she could give a hug! Pray with me!

Day 8..9-23-09



Let me tell you how much I love Starbucks gift cards! A TON!

I was going through a bunch of stuff before we left and I ran across a few gift cards from Christmas and birthdays. I grabbed them and threw them in my pocket to take with me! Oh the joys of a Caramel Macchiato first thing in the morning before a 6 hour cry fest!

Ok so the crying has gotten a bit better. She is still crying but it seems to be getting shorter and she is having spurts of calm even during activities that she really doesn't like! Such a trooper!

She looked MUCH better on the treadmill this morning and was doing some great pushing through her arms too! Tall knell is looking great and she is trying to curl up a lot less. I am so excited to see her moving...yes with help... in all fours as this was a position that we have only gotten her in for a few seconds at a time at home. All in all this is sooooooo good for her even though it is a ton of work! Kinda like going to the gym and working out for 4 hours straight with out stopping. Think about that for just one moment!!!!

We are really working on weight bearing in both her arms and legs with is just what the doctor ordered! Makenzie is not fond of doing this but her dislike is what is hurting her. Especially her right hip. We have gained so many great ideas during this trip! Many of them serious money savers!





When we got home I started to feel really tired again so I decided that instead of giving into it we were going to go for a walk on the beach. It was the perfect day with a heavy fog over the ocean blocking the sun. We walked about 10 blocks down the beach and up a monster sized hill and found a really fun restaurant called Panchos. We sat down and ate some dinner. Makenzie was SOOOO tired so I ended up taking most of it home in a to go box but we still had fun!







Here was the scenery of our walk! This place is sooooo beautiful!!! I wish we had more time to just sit and enjoy!





We are at the halfway point. Today was hump day! Please keep praying for health and healing! Please also pray for the boys and my parents at home! This has been a GREAT trip so far. Makenzie had come so far and I have learned so much! Believe... Prayer Works!


Beach Therapy Day 9 and 10 9/24 and 9/25/2009

Where do I even begin! LOL

First with an I'm sorry for missing the last couple of days!

We have been so busy! Weds night Makenzie's PT and OT flew in to LA to hang out and see Makenzie. They also receive a more broad training on the Neuro Suit so that we can continue to progress Makenzie with this tool!


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Makenzie did GREAT on Thursday and Friday. A lot more of the same activities and a lot less crying!


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There are a couple of REALLY BIG things that we are seeing right now with Makenzie. The first and most exciting is that she is EATING! Not only is she eating she is LIKING it! Last night we got Makenzie to roll for a bite of guacamole! WOW!!! Today she practiced CHEWING... yes I said chewing! She thought that Cheetos were the best! She has really been liking avocado, cottage cheese, sweet potatoes, pudding and mashed potatoes! Not so fond of yogurt or applesauce!



This just amazes me because she has not wanted anything to do with ANYTHING in her mouth for at least the last 8 months and all of the sudden she LIKES it! AMAZING! Thank You Jesus!!!

The second is that she is SOOOO loose! Her flexion has reduced drastically and she is making more movements with her arms. I have been taking her to a chiropractor/craniocacral doctor here and he has managed to unsissor her C1 and C2 vertebrae and has also recorded marked and sustained looseness and movement in her pelvis and shoulders! This means that her hip is IMPROVING! WOW! I am so encouraged right now and am so thankful for God's continued healing!

Last night one of the assistants from NAPA came over to the condo and watched Makenzie so that we could all go out to dinner! It was soooo awesome to get to go out with adults! I love my daughter but it was a great night and I didn't really even worry about Makenzie because I new she was in great hands! Thank you so much K!!!

Today we made it down to the beach! OH MAN! What I have been waiting 2 weeks for!!! I have been to the beach many times this last couple of weeks but to have some extra friends and great company made it even more wonderful!!! Makenzie loves the beach and we all left pretty wet! She got to play in the sand and of course the surf is still her favorite!


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Photo Sharing - Video Sharing - Photo Printing



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Photo Sharing - Video Sharing - Photo Printing


Makenzie got to bed on time tonight for the first time in a couple of days and I hope she sleeps well because tomorrow we are going to DISNEY LAND!!!!!! I am so excited!

I have lots to do tonight so I am going to sign off for now! Please keep praying for health and healing! Pray for God to continue to show his face and that all of the glory would be his! Also there are more pictures of the last few days on dropshots.

Believe..... Prayer Works!!!

Disneyland 2009.. 9/27/09




Disneyland was GREAT!!! I don't care what anyone says, I still think it is the most magical place on earth!

We went with some good friends and all of the kids did wonderful! We were able to ride ALL of the kids rides. Makenzie loves the stimulation! Her favorite ride was the Matterhorn! For those of you that have never been.... that is a ROLLER COASTER! She belly laughed the whole time!!! I was amazed!

We stopped for lunch and Makenzie ate too! That is the best feeling ever!

It is amazing also to see the changes in Makenzie since we went to Disney World with the whole family in July! Not only did she look at everything during a ride she followed specific things until they were out of site! AMAZING!!!

We left at about 5:30pm and headed back home. Julie and Joey stayed the night and we had a great time just chatting. Makenzie had her first sleep over!

This has been a great trip! We have done therapy but we have also had a GREAT time as well! We have been to the beach, the aquarium, I got to go to dinner alone with friends, and Disney Land! We have seen many friends and as our time her draws to an end I am starting to miss them already!

Please continue to pray for health and healing! Makenzie is doing great and I pray that this progress continues as we carry it over at home!

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