Monday, August 31, 2009

School Bells are Ringing!!!!




The boys at the Cabin  this weekend! God is AMAZING!



All 4 of my kiddos are now in school!!

Makenzie started preschool today. She had a lot of fun! She painted and played with bugs and even colored with a marker! All while sitting in a normal preschool chair at the table with her new friends! (with help of course) She went out side on the playground but it was way to bright and hot to do much. She read a few books and sat like a big girl during circle time.

Man has she come a long ways in a year since her very first day of preschool!

We have a long way to go at school but this was a GREAT start! Her teachers were SOOO loving and very receptive to everything I suggested! I felt VERY welcome! Oh yeah i guess I didn't state at the start that I am going to preschool with her for at least the first 2 weeks!

I am going to bring her chair tomorrow as they have located a hi-low base that it will fit on to allow her the support she needs at the same time being with her friends. This is going to be a great year!

Makenzie also told me today with sounds that were so different then normal that she loved me! I play this game with her. It goes like this..... I get in her face and say "I".....and a pause for her to make a sound.... the I say "love" ... and another pause...and she will respond again... and then I will say "you" at which she bursts out laughing EVERY time! It is so much fun! Well this morning she pushed out a VERY clear "I" and then rounded her mouth and came soooo close to saying "love".....then of course on cue the laughter erupted after "you"! She is so smart and is doing so well!!!

After falling asleep in Gods arms and getting a good nights rest I feel much better! I thank you all for your kind words and prayers! I wish you could truly know how much they mean to me! It is what keeps me going a lot of days! I know that will not be the last day I will fall and need to be picked up! I know though that when it does happen you all will be here and continue to pray for us! Thank You!!!


Sunday, August 30, 2009

Who am I?

Today was a very LONG and emotionally trying day!

It started out great! Makenzie and I played and then got ready for church. The topic at church was very fitting and I left feeling great!

Then it all began! I can not explain it all but the feeling of anothers irresponsibility and lack of gratefulness and respect took a huge toll on me!

I am by no means a saint and with out God Makenzie would not be where she is today. I have however given up a ton of my dreams and who I was for my family, especially Makenzie! I don't really even know who I am anymore. I am a really good therapist, doctor, driver, advocate, and boo boo kisser.

I realized this a while ago during one of the very few times I have managed to slip out alone for a bit with a friend. Unless you want to talk about brain injury, IEP, bio medical treatment or similar topics, I really have nothing else to say! I don't work... can't talk about that. I don't have any hobbies... nothen there to talk about. I DON'T have any other interests...why... I don't know but most likely because I have no time or money to give for me.

Some days I find this unfair. Some days I don't have time to think about it and most days there is no where I would rather be but here! But none the less it hurts to feel so unappreciated!

So instead of putting Makenzie to bed on time tonight and mooping on my couch, I loaded her up and we went back to church for a praise and worship service. I believe this was the first one my church has ever had and it was GREAT!

Very emotional. I am a mess! Yes I can get through the day, Yes I can be GREAT at all of the tasks that need to be done. But my soul is shattered!

I spent from the second I sat down to the moment I left in tears. I prayed and praised. I tried to reground myself in God! In the love and hope he has for me! Knowing that he can move all of the mountains and carry me over every storm in my life if I just let Him!

Here is the problem and this is were I need a ton of prayers! I have no clue how to want a relationship with God more then I want healing for my little girl! I love my princess and prince's more then life itself and that is hard to top.

Through all of this I have really never been mad at God. I can see him EVERY day in my life and what he is doing for Makenzie and the rest of this family but that is not all he wants from me!

I do still believe that everything we have done up to this point to help Makenzie was and will continue to be from God! He loves her just as much as I do... wait... he loves her way more then I could ever fathom... He has in trusted her to me and I am so proud to be her mommy! He has given me a very special job and his plan has gotta be great!

As I sit and ponder today. I try to push out anger and bitterness and allow forgiveness. I try to extend Gods love even if it is not understood. I push on down the long road of special needs. All that it entails and the uncertainty of the future. I try to figure out where God is leading me and who I really am.

So who am I? The answer to that I don't think any of us truly know. I want to be whatever God is calling me to be! I think I have an idea... but he will have to keep opening doors! He will, I trust and believe!

Please pray that God would be close to this family! Pray for healing strength, peace, hope, and protection. JUST PRAY!

Saturday, August 29, 2009

Teaser

Have you ever gone into a dark room after a long day and layed in bed with your little girl.. at oh say about 6pm? I do this every night to put Makenzie to bed. What do you think happens most nights? That's right, I also end up falling asleep! LOL! The deal at our house is, if after 15 min of silence on the baby monitor I do not come down the stairs one of the boys is to come and get me up! Well last night the boys were with grandma and grandpa at the cabin and I had no one to wake me up!!! Needless to say I fell asleep at about 7pm and woke up to Makenzie's beeping pump at 2am!!! That is more sleep before 2am then I get on most nights!

I made more formula, dosed a med and went back up to bed! It took a while to fall back asleep but I did and slept until about 7:30am!! I am wondering however if it is possible to get to much sleep because I was tired ALL day!

Makenzie and I had a great day! We stretched and played all morning before getting dressed to run a few errands.

She is doing SOOO good! I would love to shout from the highest mountain about all of the cool new things she has been doing since we got back from Costa Rica but I am going to let her therapist do that next week! I have asked if she would be my guest here and write from her view about what she has seen in the last 6 weeks. This is a therapist that has worked with Makenzie from day one and is also the only professional other then her pediatrician that knew her before her accident. She said she would love to. So that is your teaser! Look for that post hopefully sometime next week!

The boys all had a great week at school! Zach is REALLY enjoying middle school and has even decided to join the track team. He has also made a few good friends already ! I am so proud of him!!!

Makenizie starts school on Monday and I am really excited for that! She needs the stimulation of the kids and activities! I just can not reproduce that at home!

Please keep praying! Pray for God to grow those cells inside of her! Pray that her first day of school goes well and pray for our trip to CA! We leave 2 weeks from tomorrow!!! WOW! I am so excited!

Thursday, August 27, 2009

School Days are Coming!!!

Today was a great day.

It started out with therapy. Makenzie did great..showing off that is... we didn't really get much therapy in because her new OT and PT from her school came. Her home therapists showed them a ton of stuff on what we are working on right now.

When they walked in the door she gave them the infamous shy head on my shoulder smile. I love that smile! She so knows that she had no clue who these new people were! So cute. She did however warm up a bit and she showed them a ton of floor sitting, bolster sitting, standing and walking.

Both the OT and PT seemed very knowledgeable and I felt they made a very good connection with Makenzie. I am so excited to get started and see how much Makenzie will learn this year!

After everyone left we got ready and headed off to the open house at the school. I was a bit nervous as these events can be quite crazy. All of the kids, their moms and dads, siblings, cats, dogs... ok just kidding.. but none the less, not a lot of one on one conversation and a whole lot of ciaos!

We first stopped at the play ground because after all when you are 4 that IS the most important part right? It was great. We walked up the stair and went down the slide, Makenzie loved it. The playground is surrounded by a sidewalk that is painted like a road. I guess I better get on ordering her the trike she so loved at therapy! The only concern that I have is there is no shade and Makenzie really doesn't like the sun. I am sure we will figure that out!!!

The inside of the school is very nice! The hallways are wide... crazy things I now pay attention to. It is super clean and there is a lot of space in the classroom.

I met the rest of the staff and it turns out the teacher goes to our church and even provided us a meal after Makenzie's accident! The first thing she said was how big Makenzie was getting and I am sure the look on my face was priceless! I was very confused as we have never met this woman before. She then explained and all that came to my mind was. man... how GREAT is this God that I serve!!!! I asked for prayers, prayed many of prayers and he ANSWERED my prayers with a teacher that loves Jesus, serves Jesus,knows my daughters story and has even been there supporting my family... AMAZING!!!

I am so blessed! We are so blessed! Thank You Jesus!

We have another crazy day tomorrow! I keep waiting for life to slow down but it never does so I think I am going to give up on that for now! LOL! Please keep praying! God listens. Believe! Thank You all for everything! Every little thing that you guys do for this family whether it is prayer, meals, donations, childcare, services... the list goes on.... makes this journey that much easier! There are not any words that could adequately explain how grateful I am for each and everyone of you! THANK YOU!!!

Wednesday, August 26, 2009

Moving in the Right Direction

Moving in the right direction! This morning I got to spend a good amount of time talking to most of the staff at Makenzie's new school over the phone. They all sounded really great!

It is really hard for me to try to tell them about what Makenzie needs and likes as it has become second nature to me! Sound Weird? Yeah it is! I just know her so well that I just do for her with out really having to think much about it.

Ok, the obvious, she LOVES kids, especially her brothers. She loves to swing, slide, and bounce. Anything that involves movement. She loves to have someone help her walk, and Play with Me Sesame is her FAVORITE show. Ernie makes her laugh. She loves music....most any kind however last week her OT was playing her some different types that she had on her i phone and Makenzie really digs Hip Hop! Crazy Girl!!

The hard stuff is trying to explain to them how to position her and what position she likes best as it changes daily. How to tell if she is engaging. Is she ignoring you or just zoned out. When to be worried and when to call 911! I just know these things! Makenzie doesn't need to talk... her mamma just knows!

I have decided that I am going to go to school with her until we leave for NAPA so that I can help them get to know Makenzie. There is no point in re inventing the wheel! That way I can show them first hand what Makenzie can do and what she likes.

The OT and PT from the school are coming tomorrow during her therapy so that they can meet Makenzie and see what we are working on. Also what they need to get for her in the classroom. I am so excited for them to meet her. We also may be going to the school tomorrow afternoon to check out the classroom and playground.

Makenzie did really well today in therapy. We put knee immobilizers on her legs and she did great standing. She is really feeling the weight shift and I so proud! The other thing we are seeing lately in standing is that her feet are flat on the ground without braces!

I also used the knee splints this afternoon to help her long sit. This also gets weight into her hips and give her aductors and hamstrings a good stretch. I put a little toy piano in front of her and she lifted her hands up to push the buttons! I am so thankful that we are finally starting to get those little arms and hands moving! Her hands, arms and shoulders also also continue to be much looser.

The best for last! A couple of days ago we went to Target to fill a RX. I took her to the toy section to check out the latest and greatest. As I said her favorite show is Sesame Street. Well, I found a bin with a bunch of character dolls in it. I picked up and Elmo and showed it to her. She gave me a big smile. So I went back and picked up an Ernie. I put it in fron of her and She paused, opened her mouth straitened her chest and let out a sound I have never heard before. She WAS trying to talk to me! She then gave me a big smile. I put Elmo back in front of her and she smile. Then Ernie again.... out came the same noise! AMAZING!!!

No I didn't buy the Ernie for her... although I really thought long and hard about it. From what I know about kids.... she would have never cared about that silly doll at home. SO we will have to go visit Ernie again next time we are at Target!!!

Tomorrow will be another crazy day at this house! Please keep praying! Makenzie continues to AMAZE me everyday!!!!

Tuesday, August 25, 2009

Time to Catch Up!!!

Today was a decent day! Everyone had a great day at school! Makenzie was a bit tight and quite cranky! She is sleeping well so pray that she wakes up in a better mood tomorrow!!!

I have a ton to catch up on around the house and need to spend tonight doing so. I am going to leave you with a poem that a friend of mine recently posted on her blog and go get to my house work that I have negleted for way to long!!!

Enjoy!

Believe... Prayer Works!!!

The World We Live In

The world we live in, not your world, but my world. The world I am talking about where special needs kids and disabled people are normal.

The world where no one is looked at with a crooked smile or squinted eyes or with a look on there face of sympathy.

A world where you are not explaining to everyone the difficulties of your life or trying to make other people understand and feel better about your situation.

The world where only we can make jokes about our lives and it be funny to only us, were you might take offense.

The world where feeding tubes, drooling, falling, slumping over, changing diapers, special diets, wheelchairs and walkers, are normal and not even looked at twice.

Where helping another is just second nature. Where the smallest physical or cognitive improvement is like winning the lottery. Where you take nothing for granted. Where you appreciate your abilities more and more each day.

A world where your disability is not a bad thing.

In this world you don't compare what one can do and the other can't. You celebrate what everyone is capable of doing all the time.

It is not a bad world or a world of unhappiness.

Our world is not worse than your world.

Our world is just different then your world and unless you have lived in both worlds you would NEVER understand. You can only imagine.

The world where I pray you would NEVER have to be a part of. The World I Live In.

Monday, August 24, 2009

Me Time




I am exhausted tonight!

It is my own fault for not going to bed on time! After the kids are all tucked in bed I feel free! Well kind of... I am free to do what I want IN my house! It is the only time in my life that I can do what I want and feel like a person separate from my kids!

Most nights I am productive. Doing the laundry, dishes, cleaning the floors.... but I try to limit that some! If I do not give myself time away from chores... I feel like all I do is take care of kids and the house!

So what do I do?

For a while I was addicted to a Face book game called Farm Town. It was the silliest game. You plow fields, harvest crops, plant crops, and harvest other people's crops for money. Point, click, point click, point click!! That's it! Dumb right? Yeah really it was. However, after I started playing it and after getting several of my friend's addicted to it as well, I realized why I liked it so much. It was predictable. The only predictable thing in my life! When you planted cabbage, exactly 24 hours later... it was done. When you harvested it you always earned the same amount of coins. I eventually got enough points and coins to buy a mansion for my farm.. the only one I will probably ever have! I finished the game! FINISHED! DONE! I am over it now but it was fun and quite mindless! It was nice.

I am however still addicted to FaceBook! LOL!! It is a wonderful outlet for me. As someone who doesn't have a lot of time for a social life it allows me to connect with people near and far! At the rate I am chatting right now, this post may take an hour to write!

I am not huge into TV but I do have a few shows that I watch every week!

You will NEVER find me reading a book... don't know why, I used to love to read! Maybe it is because instead of reading books I read blogs! Oh and I write blogs!

This is also the time that I have to talk to my closest friends... ALONE!!! There is no one calling my name, fighting, or needing anything from me! There are no little ears dipping into my conversations. I am not doing therapy or running errands. There are no board games or skate tricks to interrupt. Imagine (some of you don't need to.... you live it with me) not getting to go to work. Not having adults to talk to. Not having a lunch break. Not enjoying the ride home from work with the radio basting.

This time that I get at night is priceless! Maybe I waste a lot of it away. Maybe not. I don't go to lunch with my friends...if I do I have at least one child with me... guess who? LOL. There are no weekend trips to Vegas. There are no early Saturday morning coffee outings to Starbucks. I always have company at the Super market. Woman's Retreat... what is that. Scrapbooking parties... yeah right! Are you following me? This is ok with me most days! I get me time! Just not the same way most of you get yours!

Am I jealous some days? OH YEAH!!! I would love to go camping and biking. I would love to spend the weekends on the ski slopes or hanging at the cabin. Oh how I would love to go out for coffee with a friend.

Yes all of those things are nice and they feel good in the moment but my heart is HERE! With my kids! With my family! There is really nowhere I would rather be then in my cozy home, with my kids tucked safely in there beds!



The boys had a great first day at school! Zach made it to school and back on the bus for the first time ever! When he got home we headed to the music store and rented him a violin for his orchestra class! This is also a first for him! He is still a boy and I had to play 20 questions with him to get any info on his day but I managed to squeeze out the highlights!



Makenzie had a pretty good day too! She doesn't start school until Monday so she had PT this morning and we focused on her right foot. Her therapist said that she was putting weight into it just fine. She thinks that she has however has made improvements with her movement and instead of giving a full extension response while standing she is trying to shift her own weight and getting used to the way it feels. We didn't get ANY pain responses so the idea that the muscles or nerves in her foot were damaged from the IV doesn't make since at this point. That is a good thing!!



Please keep praying! We leave for the NAPA center on Sept. 13Th! That is coming up FAST! Please pray for the stem cells to continue to grow and for God to lead them and allow them to work his Miracle! We believe! Pray!

Sunday, August 23, 2009

Gowing Up!

Look at that face!!! Defiantly worth FIGHTING for!


Heart Stealer's!!!

The last day of summer break is official here and gone! The kids are all tucked in bed and ready for what tomorrow will bring!

New teachers and friends. New classrooms and for my oldest and youngest a new school! Even for children there are so many unknowns.

As I sat tonight at the dinner table watching my boys excited anticipation I was in awe of how grown up they are. It seems like yesterday that I was swaddling them and watching grow into little people. After they started walking, talking, eating real food, and drinking from a big cup, time seemed to stand still for me. I didn't think they would ever really grow up! Not that I wanted to speed up the process! They were going to be my babies for ever!

Yes they have had many more developmental milestones since then but none as big as the ones in the first year!

I look at them today and they are all SO grown up! My baby girl has lost her toddler face and is really starting to look like a big girl! I just bought my oldest a cell phone...yes.. I really did that! Zach is also to the point where he thinks he knows it all! Mom is becoming more dumb every day! LOL! Josh has finally lost some teeth and is going to be the child that gives me a run for my money during the teen years... even still he has a heart of gold!! Kaleb is such a strong, brave, confident young man! Makenzie, well she is just the happiest, most pleasant little princess I know! I am so proud!

As tomorrow comes and we start a new year I am so excited to see what it will bring! As always we have a ton to get done! New things to learn! More adventures to go on! Plenty of good times and I am sure our fair share of hard times!

The uncertainty of life is something that we will never understand! As we face the unknowns will we pull up our bootstraps and face each day with Gods Hope and promise or do we hide away wondering why our lives are so hard!

Eleven years ago when I became a mother I never ever imagined this was how my life would be! I never thought the day would come that I would send my baby on a bus with a cell phone in his pocket to middle school! I never thought that my only daughter would almost die! I never thought I would be in the world of IEP's, Stem Cell Therapy, HBOT, Neuro suit therapy, and every medical specialist under the sun.

This was NOT my dream! It is my reality! I love my life! Do I wish it had turned out a bit different... yes.. but tell me who wouldn't? I choose to pull up my bootstraps and face tomorrow and the next year with hope and trust that God is in control! He knows what I need and continues to take care of my every need.

Be looking for some BIG exciting stuff this year! I have some really cool stuff up my sleeve and I can't wait to share it with the world! God will continue to use this family for his glory! Will you let him do the same in yours?

Please keep praying!!!

Saturday, August 22, 2009

My Boys

Tonight I want to brag on my boys for a while!

For the last two and a half years I feel like my boys have really gotten the short end of the stick. There is so much that we used to do that we just can't do right now. I have traveled near and far for therapy and feel as though I constantly have to put them off to take care of their sister.

It has gotten better over time but it is still not the normal they knew.

However, they love Makenzie so much. They protect her, play with her, ask to hold her, make her laugh, and they make her cry sometimes too. They are such good helpers. When they are not around you can tell that Makenzie misses them terribly!!

On the other side of that short stick my children have learned some invaluable things about life at a very young age! They have learned patients, they have learned how to care deeply for people that are not just like them, they have learned responsibility and independence. They have learned what it is to be a team. They have learned selflessness, they have learned how to give, and the list goes on.

Yes they are still little and yes they still need their mommy.

I am here! I never leave them in charge or Makenzie but I do ask that they help!

They all know how to run her feeding pump. They know what the error messages mean and for the most part can get it fixed! They know what makes her happy and love to help entertain her while I am busy doing stuff like making dinner! In fact on that note my oldest can even make dinner! He can plan it, get everything out, prepare it, and serve it.... ALL BY HIMSELF! Did I mention he is only 11! We are however still working on the cleaning dinner up part but I think he is off to a good start!!

They can put Makenzie in her chair, get her on the swing, walk with her around the house,and put on her favorite tv shows. They help me distract her at night from throwing her temper tantrums, and always come to her rescue when she is upset! They are great helpers during therapy too! I am not sure what Makenzie or I would do without them!

They are growing up soooo fast! They are such good kids! Yes, they have their moments! Yes, they are still children but they are on their way to becoming amazing young men!!!

I am so proud of ALL of them!

Friday, August 21, 2009

Update

Thank you for all of the prayers for Makenzie's IEP meeting!

The meeting itself went well. We talked about a lot of the issues from last year and how we were going to resolve them. They were very kind and seemed willing to do what ever it takes to make this year increadable!

Makenzie will be attending a BRAND NEW school that is only preschool! There are 4 other classes there and will be 9 different specialists on top of teachers and aids. They have added an extra aid in her classroom as Makenzie needs someone to be with her at all times! The playground will be accesable and the classroom is bigger allowing more room for all of her equiptment! They seem to feel that the classroom staff will be a very good fit for Makenzie.

Now being the Mamma bear that I am.... I am excited but I won't believe it untill I see it! We will go in next week to meet the staff. See the class room and look at equiptment to decide what will and will not work for Makenzie. Her home PT, OT and SLP will also be there to share ideas with the staff.

All in All I think it was a GREAT starting point and hope this will be a good do over! LOL

Makenzie continues to do VERY well! She is so much more alert and following directions amazingly fast!! She is making a ton of new sounds and has be trying to close her lips!

We have been working hard on Oral Motor and she has been chewing a bit and bitting therapy tools on command! She is allowing more and more in her mounth and even tried to suck on a pacifier a few days ago!

She has also been using her arms and hands a lot. She has been bending her elbow when asked as well as placing her arms in different places when requested. Her hands have stayed a ton looser and the range in her shoulders is much improved!

The only big issue she is having right now is still her crazy right leg! For a while it seemed to be getting better but has been bothering her more latley. That is the foot she had the IV in while we where in Costa Rica. She will not put much weight on it and the great walking she was doing in the gait trainer has all but ceassed! PLEASE pray for this! She LOVES to walk! I LOVE to watch her walk! I don't know what is wrong or why but I know that God will hear our requests for healing in this area! Pray that her leg, ankle, foot... what ever it is that is hurting will feel better!

All crazy days must come to an end! Tonight I have been blessed with an early end! 1 kiddo at Grandmas, 2 at a sleep over, and the princess is sound asleep! I think it is time for a glass of wine and a movie!!!

Pray!

Thursday, August 20, 2009

Numbers

Have you ever been so mad that you just wanted to crawl under the bed and just pray it all goes away?

Tonight I am feeling that way about Makenzie's IEP meeting! I love my daughter so much but to the school district I feel she is nothing more then a number, a reason to cover their butts and a potential law suit.

She is just another IEP. One more meeting. Funding and budgets. A reason to throw people under the bus.

Maybe I am wrong! In fact I hope I am. This is just how I feel!

As I get ready for this meeting tomorrow I am filled with anxious anxiety! I want to have a positive attitude but it is not happening! I want to believe the words that they say. However, they have given me so many reasons not to. There have been so many empty promises.

I just don't understand why this has to be so hard! I guess that is why they have laws like FAPE and IDEA. I guess that is why there is 2 MILLION dollars in the budget to send kids to private schools when they can not meet their needs. I guess it is all just due process!

Well process I will! I will not back down! I will not apologize. I will not let them blame failure on ANYONE or anything other then what is true and right.

Honestly this whole post is quite embarrassing for me to write. After how far Makenzie has come. After all of the community support. After everything we have been through. To admit to the world the Makenzie had a terrible first year of school and that it doesn't appear to be getting any better is very depressing! I know it isn't my fault but there are some days that I wonder.

I wonder how this could have gotten so messed up. I wonder why I feel I am being viewed as the problem when I am not asking for anything other then my child to be included in a class of her peers. I don't think that is asking to much!

I want her to be the weather helper, the calender helper, and the counter. Just like every one else in the class! Not just the line leader, the caboose, and the door holder. All things that just happen by putting her in a wagon at either the front or the back of a line. That is not integration! I want her to have a place to sit at a table with her friends... not on an aids lap where she has no movement possibilities.

I want these people to take responsibly! I want them them to communicate. I want them to be team players!

I want most of all for this to be about the sparkly, smiley, always happy, little princess named Makenzie!

NOT ANYTHING ELSE!!!

God will shine through! God will help me stay positive! God will help us communicate in words that they will understand! God will provide the right environment and teachers. God will provide every little thing that Makenzie needs as he always has!

PRAY!!!

Wednesday, August 19, 2009

Grocery Fun

Have I already mentioned how ready I am for school to start!!!!

For starters I REALLY like to go grocery shopping ALONE!!! Today we had a bunch of errands to run. On of which happened to be going to the Grocery store. My kids are really pretty good but there is SO MUCH STUFF that every kid MUST have there! Every time I turned around one of them was holding something in my face... can we buy this! .... I have money at home... I will pay you back... we need this.. I want that..AHHHHHH. Then there is the battle over who will push the cart and even worse who gets to shofer Makenzie around the store. Makenzie would much prefer her brothers to push her because they are CRAZY!!!

It goes a little something like this.... Josh SLOW down.... Zach watch where you are going... Kaleb? Where he go?..... all the while Makenzie is laughing so hard she can barely breath! Oh by the way...That is how you locate Kaleb...lol

I am not sure how many looks of pity I got in the hour that we were there but I am pretty sure I would need more then 2 hands to count them. We are a WIDE load. One shopping cart; one wheel chair, myself and 4 kids. We get in the way. We take up 3/4 of the aisle. Sometimes I wonder if I don't look like I speak English as "excuse me" seems to be a hard phrase to come by these days.

Did I mention I can't wait for school to start?

One other thing I have learned this summer is that SAM's club is really not such a great deal! Yes, there are things like toilet paper and fruit snacks that are way cheaper. But not much else! In the end I end up spending way more at Sam's and don't even get everything I need to make a whole meal! I don't really know what cloud I have been living on for so long but I think my Sam's club days are coming to an end.

I have gotten ALL the details firmed up for our trip to NAPA! All that is left to do it PACK!!! Urg!

We also have a meeting on Friday with the school district. Makenzie is so ready to go back to school! Man, I hope it goes well! We have a TON to work out!

We have open houses for both the middle school and the elementary school tomorrow night. We also have school check in and 3 therapies all happening tomorrow! I really could use a house manager.... or maybe a day planner would do the trick! LOL

Please pray for our meeting on Friday! Pray that God would be present and that he would shine through! Pray that we make it through everything that needs to be taken care of so that Makenzie can start school next week! Pray that we will get her into the best program possible with teachers that will invest in her, love her, and most importantly,,, BELIEVE in her!!!

Believe.. Prayer Works!!!

Tuesday, August 18, 2009

Frequent Fliers

We are frequent fliers at the Children's Hospital for one reason or another. Today it was to have the rod removed from Kalebs arm. He broke his arm one week before school got out and one week before school is back in session for the year his arm is completely healed. Oh the wonder of our bodies!

Going in for this kind of stuff is always FUN!! It is a 6 hour trip for a 20 min surgery. The hospital policies always drive me crazy as my life doesn't fit into their box.

Did you know that children under 12 can't go into the recovery room but they can go into pre op and discharge? Well that would have been nice to know before I was standing there with all 4 of my children!

Needless to say I got it worked out... as I always do. The boys stayed in the waiting area and finished their lunch and they allowed me to take Makenzie into recovery even though she isn't 12.

he was in recovery for all of maybe 20 min. He had been there for about 10 min before they called me back. When I walked up to his bed he looked at me and said "Hi mom" The nurse laughed and told me how great he was as most kids come out of surgery VERY cranky!

They held us hostage for another hour in discharge before they let us go home. Kaleb had 2 slushies, a bag af animal cookies.. after the first offer of Gold Fish Crackers was turned down... and a pudding. Then he insisted on wheeling himself down stairs with his new favorite toy... the wheel chair. On the way out he asked that we stop in the cafeteria for some pizza and Gatorade. My boy was HUNGRY!!

What a trooper! You would NEVER know that he just had surgery and hasn't had one drop of pain medicine since we left the hospital!

The other 2 boys were great and Makenzie was also AWESOME!! She sat in her chair with her head up ALL afternoon! She was babbling and laughing to show off for all the nurses!

When we got home she rolled for me a couple of times and then it was off to bed!

All in all it was a great day! Now it is off to finish picking up, making formula, dosing meds, putting the boys to bed, doing the dishes folding the laundry, and trying to figure out why as of 2 hours ago my TV has sound but no picture!! NOT GOOD!!

If it not one thing it is another! I get my house painted and the roof fixed and the TV and the fridge break. I have no picture on the screen and a lake in the bottom of the fridge that I have to soak up daily! I hope that one day life will settle down and I will be able to breath. Just not today!! And that is ok!! I will wait patiently!!!

Keep praying!!!

Monday, August 17, 2009

Today

"In so many ways I wish you could understand and then in other ways I hope you never really do. For if you do truly understand what its like to be "us" then that would mean that you must be one of "us". I'm not desiring one ounce of pity just a little bit of compassion and patience."

It has been a long day! Most days are great! I am a very positive person and I truly love my life! But on days like today the above quote fits so well!

Where I am tonight, is in a place that I NEED the world to understand! However I know they never will!

I do not need this out of pitty... Not because I feel sorry for myself.. not to say oh poor me.

I want people to understand what it is like to juggle everything. Not just the normal day to day stuff but all of the therapy, all of the delivery of Makenzie's supplies, all of the planing of her trips, doctor appointments, tube changes in the IR, emergency room visits for seemingly simple illnesses that last for hours on end.. most of which occur in the middle of the night, meetings about things you would never imagine, all of the dosing of her meds and the list goes on. Then there is the constant entertaining, as Makenzie can not play by herself. Although that is not really playing, actually; but more therapy! But wait, I have 3 other kids... you fill in the blanks! I want people to stop harassing me when I park in the handicapped spot because I don't look disabled before I even make it to the other side of the car to get Makenzie out. I just wish that everyone could truly understand what goes into every day for just basic survival before forming an opinion about my life. I just want to be able to close my eyes and imagine "normal" so that I can understand the way people think my life SHOULD be.

See there is nothing "normal" about life when something like Makenzie's accident happens to you. Regardless of the outcome. Every single part of ones life changes. Not all for the worse.... just different... very very different then most.

I say all of this because I had a rough day. I say this because my face is burning from dried tears. I say this because I am tired. I say this because I have so many more uphill battles to come and I know this will not be the last day like today!

I say this also because I don't want to be normal. I love my daughter. I love what she has taught me. I love where this journey is leading me. I love the people this "un normal" life has brought into my life. I love to feel so loved and blessed.

You see I haven't missed the good things in life. No I haven't forgotten all of you out there that loved and support us! Nope sure haven't! I thank you all for that from the bottom of my heart because with out it Makenzie would NOT be where she is today and neither would I!!!

I realize at the end of the day... after getting all of the e mails sent out, the reservations finished up, the checks in the mail, the errands run, and the long stressful conversations about things that are out of my control, I made it through today!!!! That one way or another I always do! That I am STRONG! That no matter how tall the mountain is, God will carry me up it and the reward is always GREAT!

I do not know what God has up his sleeve for the rest of my life. Or why this life was given to me but I know it is going to be GREAT!!!

So please... all I ask is for a little bit of compassion and patience!

More Rolling Fun!

Don't be afraid. Stand still and watch the Lord rescue you today... Exodus 14:13 (Children version)






Days like today are are great!

We finally got to go to church again! It seems like there are so many things that have gotten in the way of that lately. In the last couple of weeks it has been sickness!

We went out to lunch with my brother and sister in law after church and it was GREAT to catch up!!!

It seems like I have just been bouncing from one project to the next!! Disney World (not really a project..can I go back tomorrow?), Costa Rica, Home improvements, IEP meeting, and then NAPA Center! This summer has been way busier then I thought it would be but it was so worth it!

The kids go back to school in a week and I can't wait! They are so bored! I am hoping to get in a couple of fun things this week in between all of Makenzie's therapies and my meetings! It is going to be another CRAZY week!

Makenzie continues to do GREAT!! She is so loose and her flexion has greatly improved! She has also been rolling a ton! In fact today she rolled over just because 2 different times!!! The boys were behind her a she wanted to see what was going on!!!!

This is GREAT on so many different levels! One because she is rolling! Plain and simple! Two because she is rolling with a purpose! She wants to see something. She is playing a game or I am calling her to come and see me! I am so proud of her!!!!

I have been asked several times if I think it is the stem cells. I am not sure but what I do know is that she has worked on this for 2 years and always needed some kind of help. She is so much looser and able to relax and straighten herself out like never before.

That being said I want to state again that I do not think that the Stem cells themselves are doing anything in my daughters body that has not been directed by God! I think that there is nothing in our body that is put there on accident. I believe that those Cells are there for a reason! I think God gave us different gifts and having the intelligence of a doctor and be able to figure this out is also from God! God is finishing what man can not!

Please continue to pray for Makenzie! Pray for those Cells to continue to live in her body and go where they need to go! Also please pray for our family as this journey is long and sometimes very overwhelming! It has been a great day but also long and trying! Satan can try to try to place doubt and fear in my heart but with God's protection and grace I will not be afraid! I will stand still and know that the Lord will rescue me TODAY!!!

Believe... Prayer Works!!!

Saturday, August 15, 2009

Namasté: I see the light within you and I honor it.



"Ian was a genuine soul full of love, compassion, sensitivity and respect for everyone. A servant leader with courage, character, conviction and integrity, Ian inspired each of us to find a way to contribute, make a difference, and be of service to our fragile planet. Thus, during Ian's earthly sojourn, he managed to do something extraordinary with his life: to find the spiritual light of love within, shine it on a world in need of mercy, grace and compassion, and motivate others to carry on his journey. That was his gift to us all."

WHAT A DAY!!!

We headed out to the skate park this morning for a Skate Competition. This was the first skate event we have ever been too.

This however was not just any skate event! This was put on to honor a very special young man named Ian "Wally" Wallace. Ian only lived 17 short years here on earth. I never knew Ian but after meeting his parents I am confident he was an amazing young man!!!

This was the 4th annual Skate for the Cause Event. Ian's parent's have started a non profit organization that gives out scholarships to College Freshman. They also have this skate event that benefits a local charity. This year they chose to donate all of the money raised to Makenzie for her ongoing therapy!!! WOW!!!

Today was a day full of overwhelming emotion! I feel so blessed! The Wallace's are wonderful people who loved their only child soooo much! To hear them talk about Ian was heart warming and heart BREAKING all at the same time! Please pray for them as I am sure the pain of loosing a child doesn't EVER go away!! Please visit their website and consider donating to their cause! It is a good one!!!

I am not sure how many kids participated nor how much money was raised. For tonight, it doesn't matter! Just being in the presence of so many wonderful people was an unforgettable experience! To know that our community cares about kids like "Wally" enough to gather for a whole day! To Cheer and offer a moment of silence for this family. To support such a worthy cause! Amazing! Then to top it off, be given such priceless gift! No words will ever be enough to describe how this makes me feel!

To the Wallace's ....THANK YOU from the bottom of my heart! The work that you are doing in Ian's name is beyond amazing! He will never be forgotten!!

To Continuum Skate Shop.... THANK YOU! Allison, with out your family's commitment to these kids none of this would be possible!

To ALL of the kids that showed up today to offer love and support to the Wallace's and what they are doing for our community... THANK YOU!!

THANK YOU!!! This was life changing for our family!

Here are some pictures I took today! I hope to also get some better ones from others that were there to share with you soon!






The Invisible Mother


Ok tonight I am going to be lazy and post something I have found on many blogs in the last few days. It totally fits into the way I feel a lot of my life! I don't get paid, I don't get many thank you's, and I am pretty sure my whole family thinks there is such a thing as the dish fairy, the grocery fairy, the laundry fairy... you get the idea! It was so nice to be reminded that even though most do not notice the many things I do to make my home run smoothy (Is that even possible?)..... GOD DOES!!!

If you have already read this 247 times this week, I apologize! If you haven't this article is really neat!!

Oh and by the way... the rest of our day was amazing!!! Makenzie continued to roll and was so aware and happy!!! Thanks for the prayers!!!

Enjoy!!!!

The Invisible Mother
Written by Deborah

Monica, one of the best moms in the world to one of the most beautiful little girls in the world sent me the article below. I loved it and know you will also.

The Invisible Mother ……

It all began to make sense, the blank stares, the lack of response, the way one of the kids will walk into the room while I'm on the phone and ask to be taken to the store. Inside I'm thinking, 'Can't you see I'm on the phone?' Obviously, not.

No one can see that I'm on the phone, or cooking, or vacuuming the floor, or even standing on my head in the corner, because no one can see me at all. I'm invisible. The Invisible Mom. Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie this? Can you open this?

Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to ask, 'What time is it?' I'm a satellite guide to answer, 'What number is the Disney Channel?' I'm a car to
order, 'Can you pick me up at 5:30?'

One night, a group of us were having dinner, celebrating the return of a friend from England. Janice had just gotten back from a fabulous trip, and she was going on and on about the hotel she stayed in. I was sitting there, looking around at the others all put together so well. It was hard not to compare and feel sorry for myself. I was feeling pretty pathetic when Janice turned to me with a beautifully wrapped package, and said, 'I brought you this.'

It was a book on the great cathedrals of Europe.

I wasn't exactly sure why she'd given it to me until I read her inscription:

'To Charlotte , with admiration for the greatness of what you are building when no one sees.'

In the days ahead I would read - no, devour - the book. And I would discover what would become for me, 4 life-changing truths, after which I could pattern my work:

1. No one can say who built the great cathedrals - we have no record of their names.

2. These builders gave their whole lives for a work they would never see finished.

3. They made great sacrifices and expected no credit.

4. The passion of their building was fueled by their faith that the eyes of God saw everything.

A legendary story in the book told of a rich man who came to visit the cathedral while it was being built, and he saw a workman carving a tiny bird on the inside of a beam. He was puzzled and asked the man, 'Why are you spending so much time carving that bird into a beam
that will be covered by the roof? No one will ever see it.' And the workman replied, 'Because God sees.'

I closed the book, feeling the missing piece fall into place. It was almost as if I heard God whispering to me, 'I see you, Charlotte. I see the sacrifices you make every day, even when no one around you does. No act of kindness you've done, no sequin you've sewn on, no
cupcake you've baked, is too small for me to notice and smile about. You are building a great cathedral, but you can't see right now what it will become.'

At times, my invisibility feels like an affliction. But it is not a disease that is erasing my life.

It is the cure for the disease of my own self-centeredness. It is the antidote to my strong, stubborn pride.

I keep the right perspective when I see myself as a great builder. As one of the people who show up at a job that they will never see finished, to work on something that their name will never be on.

The writer of the book went so far as to say that no cathedrals could ever be built in our lifetime because there are so few people willing to sacrifice to that degree.

When I really think about it, I don't want my daughter to tell the friend she's bringing home from college for Thanksgiving, 'My Mom gets up at 4 in the morning and bakes homemade pies, and then she hand bastes a turkey for three hours and presses all the linens for the table.' That would mean I'd built a shrine or a monument to myself. I just want her to want to come home. And then, if there is anything more to say to her friend, to add, 'You're gonna love it there.'

As mothers, we are building great cathedrals. We cannot see if we're doing it right.

And one day, it is very possible that the world will marvel, not only at what we have built, but at the beauty that has been added to the world by the sacrifices of invisible women.

Friday, August 14, 2009

Stem Cells? Who knows... Who cares!!!


Photo Sharing - Video Sharing - Photo Printing


Makenzie has had a great morning!!

She has never been able to roll from side to side with out some kind of help at her arm, hips, or head. I have noticed over the past week every day she has been doing a bit better! Today she woke up, I laid her on the floor and sat with her. I called for her to come and see me and ..... she did! No help. No stretching. No practice. She just rolled!!! WOW!!!

Is this stem cells? Who knows! I would say as it has been 2 years and no rolling.. yes!!! We still have 5 months until we hit the full wait and see period!!!

To the normal person this may not be a big deal.. I mean she isn't walking and talking right? Not to me!!! If stem cells gives her the ability to roll this means she has a way to get around! it is the start! The start to wanting to crawl and walk! It is HUGE!!!

Makenzie also had a GREAT night. For the first time since she got sick last Monday she didn't puke during the night or first thing in the morning! To top it off, we are finally back at her normal dose and rate on her feeding pump!!! She has also had regular BM for 3 days! I think we are finally done with that horrible stomach bug!!!

I have lots to do today! Therapy, hair cuts, more therapy, and a meeting late this afternoon! I hope today continues to be as amazing as this morning! I will let you know!!

Pray for miracles!!!

Thursday, August 13, 2009

Locker Fun!

What time is it?

Time for school to start!!! Ok so we still have one week but the fun has begun.

Zach had his middle school check in today! The school is HUGE. It is clean and very beautiful. He is so excited! We handed in all of the forms and got his locker! Oh boy! I have been helping him learn how to get a lock open this summer and they worked on it a ton at his transitional class last week. I know that he will get the hang of it! He did get it open 3 times by himself but it took quite a while.

We met one of the security guys... yes I said security...scary... he was VERY nice. He asked each of the boys what their names were. He looked at me and said... wow those are great names from the Bible. Did I mention this is a public school. It was a great feeling that he even noticed and then and acknowledged it! God is EVERYWHERE!

The boys had their last day of skate clinic this morning and learned a lot! They got a ton of practice and are looking so good!!! Must be time for their first competition! They are so excited!!! I am too.

This will be the first sport type activity that they have gotten into since Makenzie's accident. It has been so much fun!! It makes me want to put them back into sports but I am still not sure that I can handle all of the time and driving that those require! We shall see.

Zach is going to do track and basketball at school. This is so great for him... and me too! They will have practice after school and then a late bus will bring him home! This is so perfect as it won't require me to do all of the practice driving and waiting but I can still go to the games and meets!

The elementary check in is next week alone with an open house's for both schools. Zach also has 2 more days of stuff at his school before they acually go back to school for the year!

As far as Makenzie's school... no where closer... other then our first meeting of the yeat. I am very tired of it all! Just the thought is overwhelming! We will have our meeting with the school district at my house on Friday. There is a lot to talk about and not a lot of time! I wish this was going to be simple. It won't be. Just when you think it can't get any more complicated it does and tonight it did! I am not going to go into details but I am incredibly upset and very frustrated.

They need to understand that at the end of the day this is about Makenzie! It is about her right to have Free and Appropriate Education. It is about her need to be with her peers doing the things that 4 year olds do!It is about her being safe. It is about communication. It is about providing her with the correct equipment and services for her to do this functionally.

Am I asking to much? NOPE! No apologies here.

Makenzie is still doing great! She has been moving around on the ground a ton! She has been rolling a lot and I found her on her stomach several times today! Go Makenzie! She has been very loose and her range has been amazing! She has also looked great in her chair! She has been keeping her head up a ton more! Even today at the skate park in the sun!!! WOW!! Prayer Works!!!

I am going to head off to bed! I need to catch up on some rest! Keep praying! Thank You all for your support!

Wednesday, August 12, 2009

Choice


Oh, do I wish I understood politics! Up until my Makenzie's accident I never really cared. Sometimes I voted others not. I never really understood and still really don't how this country is run. I get it at a very simple level.

After Makenzie's accident I was talking with a friend. It was around the time when the presidential race had just began. She was all into it. I blew her off.. saying I didn't really care. She then proceeded to remind me of all of the services that where and would in the future be given to my daughter. Most all of which came from the government. Finishing the conversation with "you better start caring!" HMMMMM.. Well i guess if you put it like that! LOL

I have since tried really hard to wrap my head around what is going on. I have gone to rallies on behalf of my favorite advocacy groups. I have been to the capital to listen in and share my story.

In the end.. I still don't get it!

I even get e-mails from several organizations that update on happenings at the capital.

No can do, still don't get it!

However, that has now turned into a bad thing... ignorance is not always bliss! Every time I turn around there is something staring me in the face about health care reform.

I am scared! Not for me but for my little girl!

With medical bills that top over $10,000 a month, this is huge for us! I want to understand but I don't. I don't want the Democratic view... nor do I want the republican view. I want the straight forward, no nonsense explanation of what the heck is going on! I am pretty sure that is not possible but i can dream right!

I want my daughter to get the care that she is getting! I want her to continue to get the therapy, the equipment, the nursing, the great doctors, the choice to have a second opinion, the ability to go to therapy clinics near and far to help her heal! I want to know that this will not all be ripped away from her!

I do not intend for this to turn into a debate... been there done that already tonight.. sorry Kim! I respect everyone has many different thoughts and views on this! That is ok! I just have a lot of anxiety about it all!

I do care! I want to see this issue fixed in a way that will help many! I want every mother out there to know that her babies will get the care that they need in time of sickness.

I have lived this for over 2 years now. Every waking moment! Every time I get out Makenzie's feeding pump, bags, extensions, formula. Two times every morning when her therapists come to work with her. Every time I put her in her walker. Her wheelchair. The talker, the medicine, diapers,the hospital, the ambulance, flight for life. Every thing other then the clothes on her back and the rubber bands in her hair have to do with some kind of medical insurance.

Please tonight get on your knees and pray for the leaders of this country! Pray that God would give them answers! Pray that God would grant peace to those of us that rely so heavily on this "system" for just basic existence! This is not just about Makenzie. Look through the list at the side of this blog for starters! Each and every single one of those families deal with this every day. Pray!

Makenzie had a great day! She is feeling much better!

Believe... Prayer Works!

Tuesday, August 11, 2009

Alone

Skate clinic, therapy, roofers, doctor appointment, target run, overall busy day!

I got to go to the skate park with my boys today while Makenzie was in therapy! As much as I love my daughter is was such a treat to be able to watch them skate with nothing but my camera to keep track of or take care of!!! Usually Makenzie is very cranky at any kind of out door activity. She loves to go to the park and go on walks outside! However, it has to be just PERFECT weather. Usually right before dusk when the sun is down far enough to not be shining in your face.

Makenzie does ok outside as long as it is not to hot or too cold. As long as it is not windy or bright and there is nothing falling from the sky! Ok well if you sit and think about that... how many days or times of day before 5pm can spend out side and be comfortable. Not many.

Don't get me wrong.... we go anyway! I just spend the whole time finding shade, putting her hat on, fighting the total flextion (she won't hold her head up in the stroller and tries to curl up in a ball) she goes into the second she gets sun in her face, or pay for it with days of extreme tightness if she gets too cold.

I am sure most of you take it for granted that you can throw the kids in the car and go! You might need a hat and sunscreen or a coat and gloves but you go and other then a bit of whining about being hot or cold there are no other issues!

While at Disney World this summer I had that thrown in my face all day. Yeah, everyone was hot but overall it was not a big deal.... unless you are Makenzie and Makenzie's mommy. We had to know where every sliver of shade was. Also the air conditioned stores and rides where the only thing that made Disney possible for her. Thank you to Disney for being so accommodating to people with special needs!

Yes, I would like my daughter to walk and talk. Even more then that right now I would like to simply be able to go outdoors to the pool, the park, the ice rink, soccer practice, parades, and amusement parks like everyone else... even if I am pushing Makenzie instead of chasing her!

I would like the weather to not limit what I do with my boys. My daughter is part of our family and she comes everywhere with us! I also don't have really anyone to leave her with even if I wanted to leave her.

I am not sure how going to the skate park this morning turned into a novel on the weather. It think it is because it was THAT great for me and if I didn't explain why, you might think I was a nut!

For all of us special mommies with special kids it is hard to know that 98% of the people in our life including our family and close friends don't understand. Nor should they. Nor would I want them to because the only way you could ever understand is to live it. This life is not just about having a kid that eats weird, can't walk, or talk and rides in a chair. It is about so much more. There is so much that I never knew I took for granted.

My life is sweet. I am blessed! I have something that most don't... I know how special all of the things most people take for granted are! When my princess does something new I KNOW how BIG it is. I take so much more joy and pride in my boys. I know what a gift each and every milestone is. I can see God in so many parts of my life. Do you pay attention to these things in your life? If not .... you should!

On a side note Makenzie did PHENOMENAL in therapy today! She was following directions almost instantly! There was no slow motion around here! She also continues to roll from side to side with great success. She is getting on her stomach and getting her hands up to push VERY quickly! These are the things that make my heart sing! Yeah Makenzie! Keep up the good work!

God is so good to us!!! To God be the Glory! With Him all things are possible! Please stand and believe that with me! Keep praying for those cells to go where they need to!!

Monday, August 10, 2009

Banging in My Ears


Oh summer is 2 weeks from being over. Yippie!

The boys started a skate clinic today and they all had a great time! It starts at 8am so it is a great start to adjusting to getting up for school again!

They also started replacing our roof today! They were here at 8:30am and just left a few minute ago...9pm! Loud is an understatment! It looks GREAT though! Makenzie amazingly fell asleep in the midst of it all. It took about an hour and she was really tired as I didnt even start trying to put her to bed until about 7:30pm. They should be back to wake me up with more banging around 7am and be done mid morning!

Makenzie had PT and speech today! It was the first PT she has had in a week and she was not very happy to work at it again!

In speech she played some computer games with Kaleb and she ROCKED! She is getting so good! Her therapist is adding more and more steps to her communication each time! She told me today that she loved me and asked for Kisses OVER and OVER!! All while looking at me with her princess eyes and huge smile!!

Man I love that kid!

We have decided on a talker and all have have to say is it will be PINK!! That is all that matters right? Just kidding! Now we have to start the process of getting a letter of Medical necessity and waiting on Medicaid! Her therapist thinks it will take about 6 weeks! Perfect timing for our return from NAPA!

Makenzie has also be doing GREAT rolling from side to side and she has been getting onto her stomach a lot lately! We were playing a game today. I was on one side and Kaleb was on the other. She was rolling from side to side from Kaleb to me and back! It was so cute and look so much better then it did 2 months ago! I hope rolling all over the floor is coming next!!! Go God! Keep a working in my baby girl!

Getting sick for Makenzie is not just getting sick. It affects her whole body for weeks! She is doing much better and her feeds are going ok. She is still on Zofran at night. She also has still been waking up once a night and throwing up. We are back to full strength formula however which is GREAT! She also has not had a bowel movement since Friday which is VERY unlike her. The doctor says that is pretty normal after a stomach bug so tomorrow if there is still none she will get some yummy poop medicine! TMI I know but it is my life and that is ...well... what I write about here! LOL!! I never imagined that poop would be the highlight or worry of my day!

As far as the meeting with the school district. I read an e-mail sent to my Speech therapist today that suggests Aug 21st as the date. That is 3 days before school starts! We don't even know what school she is going to go to! No clue how they think anything will be ready for her to go to school! I still personally haven't heard one single word from them in 3 weeks about any of it! NICE! So they have until Friday and then I will have no choice but begin to retain an attorney. I have some names of some really good ones! I hope to not have to resort to that however this shouldn't be this hard! However this is the beginning of the next 14 years of her life and I refuse to be stepped on like this for 14years!!!

Pray for continued health! Thanks for the support!!

Sunday, August 9, 2009

School Blues

Preschool last year was a bit of an experience!

Before my daughter's accident I had sent my boys to school without a second thought. With the supply list in hand we headed to Target to buy a sinful amount of paper, pencils, and crayons.

On the day of check in, at the front of the school, hung the class lists. We would find their names on the list and head into the school gym to put their names, address, and phone number on countless pieces of paper. We would return in the evening to meet their new teachers. Drop of their supplies heading to the lunch room on the way out to grab a cheap ice cream bar at the wanna be ice cream social.

Several days later we would return to the school. This time it was buzzing with excited kids running around trying to find the sign with their teachers name on it. 246 pictures later, a kiss in front of all of their old and soon to be new friends they are walked into the school for the first day! I usually turned around with tears in my eyes thinking that my babies were growing up WAY to fast and then jumped for joy and enjoyed the next 6 hours until I HAD to go pick them up again!

The school year will go by mostly uneventful with a few phone calls to the teachers, holiday parties with way too many kids that have had WAY to much sugar, a few class programs and assemblies and for the most part really great report cards!

Then I sent Makenzie to Pre school! Throw the whole above paragraph out the window and instead insert the word "HEAD ACHE"

There is no sinful school supply list. There is a however a list of numerous school district employees that need to be called. Then they ALL need to coordinate a time to meet along with ALL of her private home therapists. They call this lovely process a Child Find evaluation. This is for them to be able to tell you how much they think your child CAN'T DO. For them to gather information that will later be reduced to several short paragraphs that is indented to define your child. Then after the 3 hour gathering of the minds there should be a bunch if goals written and services laid out. This processes reoccurs every year in the form of an IEP review.

Well for us this process has been painfully difficult. The school's thoughts and ideas on how to help Makenzie be functional in a classroom have been sparse at best! They also have not provided her with all resources available. I spent 3 months in the class room showing them how I expected them to care for Makenzie.

I asked for meetings to discuss concerns and requested the specialists to contact Makenzie's home therapists for ideas on how to better seat and integrate Makenzie. Each time they made it very difficult to pull together and when we finally sat down to talk I was made to feel like my concerns were not a big deal. Most of the time it was pointless as they shot down everything I asked for because of one reason or another. I felt very ganged up on and spent many of nights wondering what I was doing wrong.

I will NEVER apologize for advocating for and protecting my daughter.

I began to wonder why I was doing all of this. It was only preschool! The problem.... Makenzie LOVES school!! She is a VERY social little girl!

To make a very, very LONG story short, it hasn't gotten any better! School starts in 2 weeks. I have no clue what school Makenzie will be going to. I was told we would have several meetings this summer to discuss what would be the best school/classroom fit for her. The head of special education told me that she would provide resumes for the staff at schools Makenzie could attend. I asked to be able to talk to several teachers and specials before deciding what school I would send Makenzie to. Nada, nothing, no meetings, no phone calls, no school visits, and no resumes. NOTHING other then a bunch of phone calls trying to pull together a meeting that was supposed to happen at the end of June!

They underestimate this mama bear! They will NOT put my daughter in a box! They will not compare her to other children! They will not expect me to trust the system that has managed to waste a year of my daughters life. If after expressing a concern I hear that every thing will be ok because the staff is trained to work with children that have special needs.... I might BARF! There is no other child like Makenzie and there is no amount of general education that is good enough for me. I WILL be heard!!! Maybe not in time for school to start but I have lots of time... no worries! They will not back me into any corners this year!!! BRING IT ON!!! LOL!!!

So when you put your kids in the car, find their class line, give them a kiss and walk away this year on the first day of school think of me!!! Think of the many other parents that also go through this painful process and be thankful that you are not one of them!

Thanks for the prayers! Keep praying! Believe.. Prayer Works!!!

Saturday, August 8, 2009

BEYOND FRUSTERATED!!!

Oh the joys of having boys!!! Here is the FUN part of our day!!!


Zach has gotten really good in a very short time!!! Time for a tournament!!!


Josh loves the tramp! Backflip 180!!!


Makenzie thought the skateboarders were so funny! Every time they would come up on or over the lip of the bowl she would laugh SOOO hard!!! It was even better if they fell!!

Now onto the FRUSTRATING part of my day....

Well the theme of home home had changed today! We had a great day and Makenzie did great!!! However tonight she has puked 2 times and I have put her back to bed 3. I know that this could go on for a while but I am DONE!!!!! (ok so if that was possible I would be done!! LOL)

Feeding has been, other then the obvious motor and speech problem, the biggest issue since her accident! She threw up almost every feed for almost a year! She was 19lbs for almost and year and considered failure to thrive for almost a year. I spent that year trying EVERY formula on the market, making my own formula, shopping at Whole Foods(otherwise known as Whole Paycheck or maybe even Whole Economy), blending foods, getting her tested for allergies and delayed food sensitivities, trying every pump dose and rate within the realm of possibility, talking to GI, homeopathic, DAN doctors, chiropractors, giving her digestive enzymes, vitamin supplements, calorie supplements, thickening her formula, down to the last step which was contacting a biochemist to try to formulate a formula just for her.

Then one day while researching new ways to help my daughter I ran across the GJ tube. Had I found the answer? YES!!! No surgery, straight to her intestine, no more puke!

The journey wasn't over. It still took another almost year to get her to a rate that would leave her pump free for most of the day.

We started very very slow and titrated the rate up. We made it to 50cc and hour. This still left her on the pump for over 18 hours a day. On the way to 55cc per hour we hit a road bump and ended up in the Hospital with Makenzie in tons of pain from her newly placed tube and vomiting. Even though it was bile and not formula it was not great! Long story short Makenzie spent 4 days inpatient. I turned down 4 drugs that we had already tried, started a treatment of bactroban for the soreness, got accused of starving my daughter, and left the hospital at the rate of 50cc an hour!

After more research and chatting with moms on a message board I frequent, I found my next answer. This was to double Makenzie's acid reflux medicine. Within two weeks we had her from 50 to 70cc's and hour and 2 weeks later to 80! Makenzie gained 6 lbs that month and her GI put her on a DIET!!!!!!

The last 6 months of my life have been great! FINALLY!!!!! Makenzie eats for 10 hours at night and 1.5 hours during the day! She rarely throws up and has been gaining weight!

NOW THIS!!!!! WHY!!!

We are leaving for NAPA center in 1 month and need EXTRA pounds and a good feeding schedule as we will need to be off the pump for at least 7 hours a day!!!! PLEASE PLEASE PRAY!!!

Makenzie's journey is FAR from over! She needs your prayers and support just as much today and in the future as she did on March 25th 2007! Please keep praying! Believe... Prayer Works!!!

Friday, August 7, 2009

In a Daze!!!

Have you ever started the morning in such a daze you are just not sure which way is up? Well that is how I felt this morning!

I stayed up until 1 am so that I could give Makenzie her Zofran in hopes that she would tolerate full strength formula all night. It didn't work! At 2 am she was up with a dirty diaper and more puke! I cleaned her up, changed the sheets, primed a new pump bag with pedialyte, and we went back to bed.

I woke up at 8:45 am to a beeping pump, my alarm going off, 2 missed phone calls and Makenzie's OT had come and gone after ringing the door bell and knocking on the door! I slept through it ALL!!!! I rolled over and there was Makenzie, just smiling away! I crawled out of bed, called her therapist to apologize profusely and looked out the frot door to see that her speech therapist had just pulled up!!!! AHHHHHH! I laid Makenzie down, answered the door, and stumbled out to the truck to get her chair so that she could sit and play/work on her computer!

The rest of the day was much better!! We skipped PT because I didn't want to bring her germs to the clinic. We took our time getting ready and then headed out to a lunch meeting.

When we got home I started her formula at half strength at the advise of her pediatrician and GI doctor. She did great! The doctors are sure that she is just still recovering and it may take a bit for her stomach to get back to normal. She has however had a ton of extra saliva and is coughing on it a lot!!! She scared me pretty good a couple of times today! One thought on this is that maybe her throat hurts and she doesn't want to swallow as much. My throat hurt as did Chris and Josh's..... Oh by the way 2 of my boys are now sick!!! I saw that coming but it still stinks!!! Or it may be from the stomach problems. Either way it is not fun!!! Please send up prayers that this stops!!!

I am so sure that you all have no desire to read about all of my day events! Sorry! It is so hard though because Makenzie can't talk. She can't tell me what hurts! She can't tell me she doesn't want to eat. That she want some juice or that a Popsicle would make her throat feel better. She can't sit up in bed and call my name in the middle of the night when she isn't feeling well. I have no clue if she has a headache or if she feels dizzy. The only way to piece it together sometimes is to write it down and look back. To have ideas from the past to use in the future.

Special needs is hard. What should be a simple yucky stomach bug is a HUGE life consuming ordeal for us. But special needs is SO SPECIAL! Life is good! Even in a DAZE!!!

Pray for health! Keep praying!! Believe... Prayer Works!!!

Thursday, August 6, 2009

Skate for the Cause




Two posts in one day! Crazy I know!!!

I promised and amazing story about the skate shop! Here it is!

Early this summer I decided to get my kids skate boards. I am watching one of my friend's kiddos for the summer and her son is into skate boarding. We have a really nice skate park right down the street and I figured that it would be fun and cheap! Well they love it!!! My oldest has been frequenting the skate park almost every night with Chris or I and during the day when it is not raining... crazy summer weather this year!!

When I went in to the shop at the beginning of the summer I had no clue what I was doing and laughed as I told them that I needed a piece of wood and 4 wheels times 3. We got to talking as she was showing me the types of boards they had. She showed me one that they had made in memory of a young man who was taken to heaven after a tragic car accident. The proceeds of that board go to a non profit fund that was set up by his parents (Ian Wallace Scholarship Fund) to honor his love for life! I told her a bit about Makenzie's story, bought the boys each a skate board and we headed out.

While in Costa Rica I received a call from my bank about someone inquiring on Makenzie's fund. When we returned I found out that it was the owner of Continuum Skate Shop She had passed along Makenzie's card. Ian's mom and dad had decided that they wanted to help Makenzie!!!!!

GOD IS SO GOOD This brings me to tears! Not only because of the financial help but that fact that we get to go to a skate tournament and touch the lives of pre-teen and teen age kids! Ian and Makenzie get to shine Gods love to so many every day! AMAZING!!!

Thank you to ALL who have supported and believed in Makenzie! She is truly a MIRACLE!

Please go to Ian's web site! Check out what this family is doing for our community! They are amazing people! THANK YOU, THANK YOU, THANK YOU!!! You have blessed our family beyond what ANY words could express!!!

Summer Bug!


This is what happen when Makenzie's mommy gets sick! LOL!

Oh man! I am so glad yesterday is over and we can move on!

Makenzie is doing great! She is happy and giggly. I started full strength formula this morning and she seems to be doing ok. A few gags and spit up but for the most part good! She is fully hydrated with lots of wet diapers witch is a relief!!!

Yesterday however mommy and daddy were sick! Yippie!! Being sick is one thing... having 4 kids and being sick is a whole different ball game!!!

The boys were pretty good! They went to play with some friends and Zach had his transitional class in the afternoon.

Makenzie didn't get up until about 9am which was nice. She was rip roaring ready to go!!! Now when you are sick and feel like you could pass out every time you stand up this becomes a problem! At moments it was nice to know that my four year old wasn't tearing the house apart. The flip side to that is every type of activity has to be assisted by me! Lifting her, holding her, playing with her.... HARD! Before giving her a bath I said a prayer for strength. She got a quick lotion, jammies and a crappy pony tail and then off to bed! Whew we made it!

Much to their dismay the boys got a early trip to bed as well and I was sound asleep by 9:30pm! Oh what a long day it was!!!

I am feeling much better. Still tired! I have asked the boys to help clean up... their messes....I am hearing a lot of fighting! Oh man! Yes we are THAT family! Zach thinks helping pick up the kitchen and doing the dishes might be the end of the world. Kaleb has thrown himself on the floor proclaiming he didn't make the mess and Josh has put all of his toys under his bed! Oh me oh my!!! Summer could not be over soon enough!

Hopefully we will be back to therapy tomorrow. I still have not been able to get a hold of anyone from the school district. Hmmmmmmm. I am not thinking that school will be starting on time for Makenzie! I have almost all of our trip together to the NAPA center! I still have several phone calls to make but we are getting there! We do have an appointment this afternoon and a lunch meeting tomorrow! By the way.... Our world doesn't stop for SICK!!!

Please pray for this bug to leave our home! Pray that the boys don't get it! Pray for the Stem Cells to continue to thrive and that we would start seeing great healing! Pray!!!

Tuesday, August 4, 2009

Beautiful Home!!

Makenzie and I went on a little adventure to the hospital last night.

She went to bed at about 6:30pm and woke up about 8:00pm throwing up! I tried several times to restart her feeds and each time with in 15 min or so she was throwing up again.

I called GI and they suggested that I run clear fluids for the night and get in to see them in the morning. So we planned on doing just that..... until she threw up the pedialite too!

I decided at about 12:30am to call her pediatrician. (sorry Joe) Even though they do not specialize in GI it is always comforting to talk to some one that knows Makenzie! When you call Children's the doctor on call it is usually one that has never seen your kid! I told him what they had said and he suggested that I wait a couple of hours and then restart the fluids. He also told me to go in to the ER if I was worried enough. So we waited... that lasted about 30 min before she began to dry heave. That was it! I had to take her in!

We got to Children's about 1:30am. I came toting 2 back packs and her pump. I have become a pro at the hospital and never go with out clothes, diapers, all of her meds for several days, formula, extra pump bags, phone charger, pump charger, and of course the computer! I don't ever go camping... lol!

They got us right back into a room and took a medical history and list of her symptoms. Of course I had to mention stem cells. As much as I didn't want to because most doctors think I am crazy I knew that I wouldn't feel like we had addressed every possible cause if I didn't!

The ER doctor contacted GI and Hepatology. GI wanted an x-ray of her stomach to check her J tube placement. It was in the right place. Then she came back with questions about the Stem cells from Hepatology and they said that from a rejection standpoint that they didn't think that was what was going on.

Alright... 4 hours later after Makenzie needed me to lay with her I am up from my "nap". Oh I feel another long night coming upon me!

Back to the events of our day...

They gave her some Zofran which is supposed to stop vomiting and it worked! They moved us to a more comfy room around 4:30m and Makenzie finally fell asleep. She slept off and on until about 8am with a fever and diareah. GI came in and looked at her. Listened to her belly and told me they were pretty sure with all of the symptoms that it was a stomach bug.

We worked on getting her to tolerate a high enough rate to keep hydrated, gave her some more Zofran and Tylenol and we left feeling a bit better around 1:30pm! 12 hours! Not to bad! LOL!

As soon as we got home I put Makenzie to bed and she fell right off to dream land. She slept quite restlessly until about 4 hours ago when I went up there! She is still sleeping!!!! Please pray she just sleeps all night!!!

Zach started his middle school transition today!!! That is somewhat of a miracle story in itself! We went to the skate shop yesterday to fix a bearing and got to talking with the lady that owns the shop. It turns out her son is starting the 6Th grade as well!!! At the same school. Also going to the transition session! I jokingly asked if she would take him and she replied "yes". Little did I know that my joke would turn into another miracle as it would have been really hard to get him there without help!!!! THANK YOU SO MUCH!!! There is so much more I could say about this skate shop but I will save it for tomorrow as I am need to get to lots of stuff around her so that I can hopefully go back to bed soon!!! Look for it! It is another amazing story in our families life! We are so blessed!!!

Please pray for healing! Pray that Makenzie gets lots of rest and wakes up feeling MUCH better in the morning! Pray that she isn't up ALL night! Pray that the rest of our family doesn't get this bug!! PRAY!!!!

Sunday, August 2, 2009

Sunday Fun

Another weekend is done! Yippie! Yes I am crazy but Monday is my favorite day of the week!

Makenzie was great today! She did a good job of sitting in her chair watching Play with me Sesame (her favorite show) and also playing with her brothers while mommy caught up on some of the house work! I do not usually do busy work during the day but it just had to be done! I can't wait until school starts again! It is so helpful to have 2 hours during the day with no kids! It is amazing what you can get done in that short period of time when no one needs anything!

We made it to church this morning for the first time in about a month! Between all of our trips and the cold that was lingering around we finally made it to God's house! It was a very fitting message for the current events of our lives and quite refreshing.

The boys had a rough start to today with tons of whining and fighting! I really thought at one point we might need a padded room! I am not sure if I would have put them or myself in it! I stopped my business for a good long game of Sorry to break up the insanity. It worked!While we played I put Makenzie on the bolster and she sat with me for the whole game! Pushing through her hands and keeping her head up!

This week has been great over all! We start on Monday with lots to get done! We have shingles in piles on the roof. I am guessing this means that one day this week we will be graced with constant pounding! Oh boy! I also need to get a meeting time set up for an IEP review with Makenzie's school district. They are making it really difficult by not returning calls and having very poor availability. At this point I am not sure if we will be able to get it all pulled together before school starts but I am trying!

Keep praying for Princess Makenzie! Believe... Prayer Works!!!

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