Christmas has come and gone. The tree is not holding any gifts under its branches and the mess has been cleaned up!
We had a great time and have stayed overly busy since Christmas Eve! I am waiting for Christmas BREAK to start but I don't think the break part is going to come about!
We have had a great time with family and friends. I am tired and ready for this break to be over. I guess that is a bit scroogy but it is what it is.
What a great Christmas we all had! We are so blessed!
"I firmly believe that the disability doesn’t lie within the child, but rather within the heart of the beholder."-Praying for Parker
Today Makenzie and I spent about 5 hours at the clinic waiting for the finishing touches to be put on her power chair.
As we sat in that overly quiet room just her and I, my eye lids got heavy and I found myself holding Makenzie just a little bit tighter. Makenzie laid perfectly still in my arms and I think we just both took in that special time together. Every once in a while Makenzie would look up and me and smile. I would look down and kiss her forehead and we would both melt back into the chair together. In that moment the crazy busy life we lead seemed non existent.
My heart is so full of love for my little girl and acceptance of what happened to her four years ago. I would love for her to walk and talk. I would love for her to be able to feed herself and play barbies with her friends. I hope and pray for this healing everyday. I expect each of my four kids to grow, learn, and be everything they can be....... that includes my daughter.
I have found over the last year that my hopes and dreams for Makenzie are still there. They just look a bit different. I think about what she is doing today and dream about what she will be when she grows up. The heart of this beholder believes without any doubt that it will be nothing short of brilliant!
We left the clinic with a power chair that looks great! It will take some more fine tuning and the right headrest and soon enough it will be perfect. It will give Makenzie a new independence that if you had asked me about three years ago I would have told you was improbable at best.
In the last three years however I have learned not to put anything past Makenzie or my God! I have BIG hopes and dreams for Makenzie and her new wheels. I can see her following me around at the store and playing ball with her brothers in the park. I can see taking walks this summer while Makenzie leads the way. I have dreams! BIG dreams!
Unfortunately Makenzie did not really get to try out her new chair today. Our three hour appointment went over by two hours and once the chair was all together I was time to head out quickly. Our amazing seating guy helped us to the van and after a few adjustment to the tie downs we got both wheelchairs in the van.
Makenzie was one tired little girl by the time all was said and done but she was such a trooper!
When we got home all of the boys were so excited to check out the chair. I am pretty sure they see it as a really fancy go kart with lots of buttons to figure out! Mr. 14 decided that the lack of a ramp into our home was no reason not to find a way to get her chair inside. I am pretty sure I came close to having a heart attack at least 5 times as he stacked boards on top of each other to make a impromptu ramp. There were several times I had a vision of Makenzie brand new independence tipped over sideways in the snow with no way to get it back up.
However nothing tragic happened and Makenzie's power chair is now residing in my living room. Mr. 14 has read the whole user manual and I am sure if he thought he could get away with it he would probably be cruising around the house as we speak! Good thing he is a smart kid and thought better of pushing his luck!
Tomorrow we are not going anywhere! Snow is falling at a rapid pace and I am feeling like it is time for a day of rest and some more snuggling. The finishing touches for Christmas can wait one more day right?
Yesterday we got the call we have been anxiously awaiting. About a week ago we submitted an application to a company for financial assistance in buying a van with a ramp. When the call came I don't remember much else but hearing the words..... "We would love to help" and melting into a heap of tears.
It is impossible to put what I was feeling at that very moment into words so I am not even going to try! When I hung up the phone I took a few minutes to soak it all in. I felt so blessed and loved I thought I just might explode. After a few minutes of soaking in the reality that we were going to be blessed with this much needed modified van, I felt so much relief when it finally hit me that I would never again have to struggle just to take Makenzie out, get her to school, and would also have the ability to transport her power chair any where we go.
I made a few phone calls trying to hold back my tears.
I tried to blog but couldn't find the words.
I made a few more phone calls and found out that we would be getting the van TODAY! More tears.
God is so good.
So early this afternoon our van was delivered.
and
Late this afternoon Makenzie and I took it for a spin.
I packed up Makenzie's dinner and put her in the wheel chair. I threw on her coat and hat and we were ready to head out the door!
Getting her in the van was a piece of cake even though I have yet to perfect the order and motor planing of securing her chair.
Makenzie is not so fond of the sound the ramp makes as it is going up and down but I trust she will get used to it over time.
Our first stop was the bank. Makenzie loved the beautiful Christmas tree they had set up. We made it into the bank, took care of business, looked at the tree, took a few pictures, and were back in the van and ready to roll in 10 minutes! Not to shabby.
Then it was off to show daddy our new wheels.
We hung out for a bit and of course made sure the tires were good and would work in the snow before we were off to the mall.
We checked out a few things at Charming Charlie's
and then headed off to Best Buy.
Makenzie LOVE the wall of TV's. I mean really who doesn't!
I wanted to make one more stop but it was getting too late and Makenzie was tired so we headed home.
I do not feel like Thank you is enough but it is all I have to give! This is life changing for our family. Doors that were closed are now wide open. The world is at Makenzie's finger tips!
THANK YOU!!!!
Tomorrow Makenzie has an appointment to adjust her Aspen seat and pick up her power chair!!!!! What a Christmas this has been already!!!!
Today I am quite speechless so I am going to leave you with a few pictures of Makenzie during speech and music therapy today. She did an amazing job. I am so thankful for the team of therapists God has blessed my daughter with! Keep up the hard work Miss Makenzie!
Makenzie and oral eating have always been an interesting combination.
There are times when she is engaged and wants to eat and there are times when she will have nothing to do with it.
In the past when she is engaged in eating I have pushed her to eat a bit more everyday. We have even gotten to the point where Makenize has been off the tube other then water for up to a month several times and then......... she stops eating. When it becomes a part of her daily life she wants nothing to do with it.
So for the last year or so I have not pushed at all. I have given Makenzie tastes of food and she loves it. She will beg for food anytime you eat in front of her and I will let her lick but that is about it.
Lately though she has made it clear she wants a bite. No I take that back....... she wants two or three ounces worth of bites.
Around Halloween I bought her some Almond yogurt and she devoured 3 ounces in 10 minutes flat. Here and there I have given her a bit more the just a lick and last week I decided to start joining her at school a couple times a week to feed Makenzie in the lunchroom with her friends. In the special needs world this is more formally know as "therapeutic feeding" or maybe a "feeding group" or how about "social eating". What ever you want to call it...... Makenzie loves to eat with others. What better place to do it then with her friends as motivators.
Today I made a bunch of baby food with fresh veggies so that I could control the consistency because baby food is usually to thin and Makenzie ends up spitting most of it out. She has done great. So great that I find myself wanting to "push" her again.
I really don't know what to do. I want Makenzie to eat but at the same time the g tube gives her what she needs without any fight. I do not put anything past my daughter these days and I believe that one day she could be tube free and able to eat anything but how to get there I do not know.
Then there is the issue of what the heck to feed her. She has not had any dairy, gluten, beef, or soy for over 3 years. This leaves me with a very limited selection of food to actually feed her that can be blended and still tastes decent.
We have had many of feeding therapists and non have really had many more ideas on any of our issues then what I already know and have tried. I have looked into intensive feeding programs but have never felt at peace with any of them nor do I feel the need to travel away from my boys for at least 8 weeks to complete those types of programs.
Any input from those mommies out there who have also struggled with this issue would be greatly appreciated and for those of you who haven't ever dealt with this kind of struggle please feel free to lift up a prayer on my behalf for wisdom and God's leading on this issue.
Makenzie is an amazing girl and whether or not she eats through her mouth or a tube does not change my love for her but I do want to give her the opportunity to enjoy life to the fullest and being able to enjoy a meal with her friends and family or maybe a Zach Anner's "Handi-Cappuccino" Milk Shake!
and with that said if you didn't catch the premiere of Rollin' with Zach you missed a great show! What an inspiration that young man is to me.
Official Trailer: Rollin' With Zach
Zach Anner is obsessed with travel. In Rollin' With Zach, he takes an authentic and often humorous approach to seeing the country, as he hosts his own half-hour travel series. Zach may have cerebral palsy, but that's never stopped him! In every episode, Zach explores a new city and conquers his "top five" list for the destination.
This is my 1000th post since October 2nd 2007. I started updating on Makenzie's health and recovery on My Space. At the time it was the popular platform. I had no clue what it was or how it worked but a few of my friends did. So after a few lessons on how to set a site up, Makenzie's Miracle was born.
Over the last several years Myspace turned into Caringbridge and Caringbridge turned into Blogger. What a ride it has been and even after 4 years I am so amazed and honored that so many people continue to check on and pray for Makenzie.
One thousand posts ago Makenzie was seven months out of her accident. She had proved to us that she had more fight in her then an one person I know. God had shown our family the miracle of life and Makenzie was stable. We had a rough start with much neuro storming and a very unhappy baby girl who cried day and night unless she was sleeping which was rare. Makenzie was unable to comfort herself and getting her to sleep at times was a two hour affair. We had been to Arizona two times for Hyperbaric treatments and had completed a round of sensory learning. During our first trip to Arizona Makenzie confirmed that she remembered who I was when she cried as I walked out of the room and she moved her legs for the first time on her own while taking a bath. On our second trip Makenzie began turning her head away from her toothbrush when I tried to brush her teeth and began looking towards sounds. She regained a decent amount of head control and also started smiling again!!!
I was looking back at some of my first posts. It was so much fun to see how much Makenzie has grown and how much healing God has blessed my little girl with!
Did you know that on October 30th 2007, Makenzie giggled for the first time after her accident?
On November 8th 2007 Makenzie passed her first swallow study?
On November 12th 2007, because Makenzie was blessed with a scholarship she was able to attend Adams camp which introduced her to the Intensive Model of Therapy.
On November 16th 2007, Makenzie sat unassisted for the first time since her accident.
December 7th 2007, was the first time I took a go at a whole food diet with Makenzie because of her reflux.
January 2008 was the first mention of Stem Cell therapy.
I also started to really see Makenzie personality shine through in January 2007.
January 12th 2008, Makenzie uttered her first sounds other then crying.
On January 18th 2008, Makenzie rolled all the way over by herself for the first time post accident.
In February 2008 ........
Makenzie got her GJ tube placed on the 14th. It was one of the best things I ever did for Makenzie.
Towards the end of February Makenzie had her first hospital stay after her accident. Pain around the GJ tube and the inability to handle feeds at a decent rate landed us inpatient, a diagnosis of Failure to thrive and accusations that I was not feeding my child. Yeah Right! This got us our first investigation by human services which was deemed unfounded on February 28th.
In March 2008, just shy of Makenzie's one year anniversary, We went back to Arizona for Sensory Learning at SIRRI. We got to spend more time with Michelle and her son DJ. I met Michelle in May 2007 when we first traveled to Arizona to do HBOT. She has become one of my best friends over the last 4 years. I thank God for her each and every day!
In the three years following we did two sessions of IMOT, one in Florida and one in California. We completed two more rounds of sensory learning, trialed a NACD protocol, consulted with a DAN doctor, tried supplementation, traveled to Costa Rica for Stem Cell Therapy, tried ABM locally and then went to CA for a session with Anat Baniel. Makenzie continued a rigorous therapy schedule at home.
In the last three years Makenzie has regained full vision with a hint of stabismis. Makenzie has learned how to walk in a walker, drive a power chair, talk with her eyes, and play on her iPad. Makenzie knows most of her colors and shapes. She can count by 10's and loves to go to school. Makenzie is growing a learning more every day!
Other then the occasional stomach bug Makenzie's vomiting issues are all under control and she is growing like a weed. She loves to eat and begs for food on a daily bases. She can eat and if she wasn't so stubborn she would not need a feeding tube but every time I push the issue she decides that she doesn't like to eat anymore.
Makenzie is an amazing little girl with a heart of gold and laughter that is super contagious. She makes everyone she comes into contact with smile and worst of days all better with a simple smile!
Makenzie sure has come a long way in 1000 posts don't you think? I sure do!!!
My family's life is busy. Being a mom to four kids there is always something to do or somewhere to go. Some days I feel like I live in my car and trust me it looks the part.
I have been noticing over the past year that it has become increasingly harder to just get up and go. Makenzie is topping the scales now at nearly 40 pounds and is getting taller my the day. This increase in weight and height is a REALLY great thing unless you are talking about traveling with a kiddo who can not help at all.
It has become increasingly difficult to get Makenzie and all of her equipment around town. There are many times that I just don't go somewhere because it is to much work. For example, today I has an appointment across town. I had loaded and unloaded Makenzie and her chair 3 times and wrestled her into the car seat twice. We hit some traffic on the highway and ended up taking a detour onto the side streets. I found myself staring at my eye doctors office building. I really needed to just stop in to grab a new box of contacts but the thought of taking the wheel chair out of the car, getting Makenzie out of her car seat, lifting her into her wheelchair, positioning her hips, strapping her in, walking into the doctors office for 5 minutes, lifting Makenzie out of her wheelchair, lifting her into the car, and wrestling her back into her car seat, was too much to bear so I passed right on by. At this point one in, out, in, out series is all my body can hand at one time.
To add icing to the cake Makenzie is getting her power wheel chair in a couple of weeks and weighing in at over 150 pounds that sucker can not be lifted....... at least not by me! LOL
I have known for a long time that our family would need a modified van. I really was hoping to wait a few more years before we bought one though. However, to keep Makenzie safe and prevent my body from potential injury and the inability to care for Makenzie caused by injury we have decided that purchasing a modified van is something that needs to be done as soon as possible before I get hurt instead of after.
Me, Consumer Reports, and Kelley Blue Book have become best friends. I have learned about the safety ratings for all the major vans that companies convert. I have called about a dozen conversion companies. I have learned the difference between direct dealers and the dealer network. I have found out that crash tested does not always mean after modifications. I have familiarized myself with the pros and cons of both the side and rear entry conversions. I now know that there is a 10", 11", 12", and 14" floor drop depending on the company and the model. Not to mention there is also the option of a full lowered floor and a center lowered floor. I have learned that Honda has the best safety rating, has the widest conversion, and is half the price to insure then the Dodge. I am on information over load.
A few days ago I had the dealer bring a long channel rear entry van to my home. On paper I was convinced that the rear conversion was going to be the best fit for our family. Wrong. The biggest issue I have with the rear conversion is the fact that the only belt available to the wheelchair user is a lap belt. While the chair is fastened into the floor of the van, and there are straps holding Makenzie into her chair these straps are not intended for the force of a crash which would potentially leave her whole upper body unprotected. The other major issue I had was how much work it to to get the chair secured into the van because of the seat on either side of the wheelchair tie downs. It really was quite the process.
So today I decided to go down to the dealership. I looked at more conversions then I can count. We put Makenzie in the side entry and the sales person showed me how the seat belt works on the side conversion. Lap belt.....check. Shoulder belt...... check. A much happier mommy..... double check!
We then looked at some specific vans and I think we found a winner. It is a Honda with the right conversion and very low miles. It is on consignment and as of tonight the woman who owns it is considering dropping the price a bit to make it more affordable for our family.
We are also still in the process of asking for some financial help to purchase the conversion because insurance will not pay for this expense. There are many doors that still need to be opened for this to work but I am at peace. One week ago I thought it would be another 3 years before a converted van would be a reality. Today the process is in full swing and I am a bit overwhelmed. I have learned not to push things but this is all moving so fast and I started to feel confused about if I was pushing or if it was open doors so as I was driving home from the dealership I had a long talk with God and peace overflowed.
I love my current van. It runs great and does everything I need it to do when it comes to getting from point A to point B. Other then oil changes and a new headlight, in over a year and a half it has required no maintenance. It is a good car but it just doesn't do what I need it to do when it comes to Makenzie.
God is opening doors. His timing is right and if this is the right van for our family it will all fall into place.
Pray for God's wisdom and blessing as our family moves forward with this huge decision. Pray for open doors.
I have been trying desperately for the last 3 days to get caught up on life. There are so many people I need to call, laundry that is growing once again into Mt Everest, clutter that is collecting on every surface, and errands that need desperately to be run.
It seem though that every time I have it in my head that I am going to work on the above tasks something stands in the way. I refer to this as " The Catch Up Game"
Saturday was one of those days. I had nothing that needed to be done so I gave Makenzie an afternoon bath before lunch in preparation to have a free afternoon to work on laundry. After her bath I decided to do a simple and routine g tube button change before I got her dressed. I popped the button out and 20 seconds later I could not get the new button back in. Try as I may and try as I might for a good 20 minutes no amount of pushing or prodding would allow for the feeding tube to be reinserted.
So off we went to the ER. Wet messy hair and all.
The hospital did a great job of getting us right back. We tried once again to get the tube in and when that failed we went for a smaller catheter. It slid right in. My heart felt much lighter! Then we slid a 14 french catheter in which is the same size as Makenzie's button. However after about 15 minutes we still could not get the button in. There was much talk of many different options many of which did not have us leaving with the problem fixed. Again my heart sank. This was supposed to be easy.
Finally after about 4 hours we decided to give Makenzie some pain killer to see if she would relax enough to stop flexing so hard against the button. I am not sure if it was the medicine or the determination of the staff but it popped in and we were on our way 5 hours after we walked through the door.
I came home to my neat piles of laundry still waiting to be washed, folded, and put away.
Yesterday we played hookie from church so that once again I could attempt to catch up. We had a Christmas tea to go to in the afternoon which gave me all morning....... until I remembered that I still needed several things to complete Makenzie's Christmas dress which see would need to wear to the tea. So out we went looking for a shrug sweater, shoes, and tights. My laundry still begging for some attention.
We did however have a great time at the tea. Makenzie and grandma got to decorate some cookies together, there was beautiful music, and great company.
Today when we woke up it was bitter cold. So Makenzie and I have been hanging at home. Mondays have turned into a nice day with no therapy. My laundry has received some attention. Dinner is in the crock pot, the dishes are done. I have made some of those phone calls, my dress has been taken out for a formal party on Saturday, Makenzie has had a bath ( and no I did not attempt anything that might land us back at the ER again! LOL) and now I think it is time for us to just hang together until the boys get home from school. I am sure they will be so happy to find their laundry dry and ready to be put away! Or not!
