Tuesday, September 29, 2009

Cold Season has Arrived ... NAPA Day 12




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

Friends

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!









Monday, September 28, 2009

Disney Land 2009




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!

Saturday, September 26, 2009

Beach Therapy NAPA Center Day's 9 and 10

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



Photo Sharing - Video Sharing - Photo Printing



Photo Sharing - Video Sharing - Photo Printing



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!!!

Wednesday, September 23, 2009

Panchos



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!



Tuesday, September 22, 2009

Napa Center Day 7

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!

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