Thursday, September 30, 2010

In Rest, I Find Peace and Hope!



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We are making baby steps at school. When I took Makenzie to school this morning she had the hick ups. So I stayed for a bit. I watched. I listened. I am happier. I just love to see Makenzie with her teacher. She is so attentive and knows how to relate. Her smile when she is talking to Makenzie is priceless.

Today as I was watching Makenzie and a small group of her friends sit at the table together I swelled with pride. Makenzie was present. She participated. She pointed and touched on command. She gets it. All of the battles were well worth it. The battles that are to come will be worth it. Oh and did I mention that Makenzie's teacher is amazing.

I still feel horrible that this amazing teacher is some how caught in the middle of Makenzie's integration and the district. I really hope she can understand that none of this has been about her because well.... she is amazing. Ok I feel better now.



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In other news.... it has now been 3 days since I have heard one single fight between the boys worth talking about at my house. This is wonderful. For the first time tonight, in as long as I can remember I had the energy and the time to follow through from start to finish when my son tried to push me to give into something he wanted but had already been told no to. Tonight I had time to sit and laugh with my boys. There was no pile of laundry, no dishes, no crumbs on the floor, no dinner to be made or cleaned up. There was nothing but time.

The last 3 years have been hard on me. I am a strong woman. I would walk on water for all of my kids.I love them so much.... but there is only one of me and this one is tired.

I have spent the last 3 days since our nanny started trying to find a balance. Trying to make the most of my time. Trying to spend extra QUALITY time with my boys but also taking some time for me. Yeah me.... crazy concept! I am pushing back feelings of guilt for not taking care of all of this myself. I am worth it. My kids are worth it. I did not loose.... I am winning. There is peace and energy coming back into my home.

I feel hope for all of us. The last 3 years have been hard on not only me but on all of my kids too! This is a new beginning and it feels really, really good!

Believe... Prayer Works!

Wednesday, September 29, 2010

Family




Ok so I am addicted to pictures. I am pretty sure I need to join a 12 step program but I have not found one for this specific problem just yet.

A couple of weeks ago I started bugging my friend Erica to get professional pictures of Morgan taken. Some how it turned into a whole group effort. All matching and ready to smile. I am not complaining...did I mention I love pictures! We met our photographer, Mary Beth Graff, at a park on the other side of town. We were running very late.... as usual and I felt horrible but we really, really did try!

It was getting late, a bit warm, and the sun was starting to shine on our shade. However, even a bit past prime lighting for the morning, we got some GREAT pictures! We aslo had a ton of fun... yes FUN taking  pictures! The boys climbed in the tree, built all kinds of structures with some bricks that were laying around, and ran thought the tall grass. I have become very spoiled to have Mary Beth! I love her work and taking photos in a studio just will never be the same. Thanks Jenny for letting me in on your gem photographer! I will never use anyone else!





http://www.mbgpics.com/

Makenzie had another good day at  school.... I think. I did not get any calls, she was in the same clothes when I picked her up , and she looked happy. I still have questions and concerns about the education and communication part so I guess we will keep plugging away at that one.
 
This afternoon I was able to jump on the tramp with my boys, play cards with my oldest, and enjoy another peaceful afternoon!
 
The boys are at youth group with my parents. Makenzie is sleeping and MP is getting groceries to feed this whole clan for the next week! Life is good!
 
I feel like a whole new woman! Thank you all for the prayers and support!
 
Believe... Prayer Works!

Tuesday, September 28, 2010

Mary Poppins

 


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Sigh

Sigh of relief

Sigh of tangible relief!

I am so excited tonight. Our new nanny came for the first time today. Let me tell you how UTTERLY amazing that was. I did not have to cook. I did not have to clean and the time that I got to spend with my kids was completely STRESS FREE!!! There was no fighting. Homework was done. Chores were done without complaint, and I am smiles from ear to ear!

God is so good.... I am pretty sure I have said that before but hey... I guess it doesn't hurt to say it again. I interviewed 5 people. It was a hard choice but I made it after much prayer and thought. Let me tell you.... without a doubt I got the best. Pretty sure Mary Poppins may need to step up her game.... just say'in! LOL!

Makenzie also had a great day. She was all laughs and tons of rolling! PT and OT went wonderful again.  I spent most of the time she was at school standing in the lobby talking to her PT. Who by the way is amazing. It was a very good talk and I hope some of the issues that she can help with will be taken care of soon.

I am now going to go sit in my clean house, and watch a bit of TV before going to bed early tonight. Why... cause I ain't got nada thing to do!!!! Thanks for all the prayers. Oh and look for a slide show tomorrow with some amazing pictures we had taken this weekend!!!

Believe... Prayer Works!

Monday, September 27, 2010

Monday Fun Day

Mondays are still my favorite day! This Monday was exceptionally good.

The boys got of to school without any hitches. Makenzie and I hung out taking it slow. no therapy just her, I , and Elmo! Great times!

We made it to school.... late. What can I say!

I brought Makenzie down to the class and stay for about 10 minutes. I gathered what I saw in my memory and then headed home. I enjoyed the time alone but most of it was spent cleaning and doing laundry. As i wiped my kitchen down I problem solved school. I processed information I have received from all different perspectives. I decided that I will address one issue at a time.

So the first issue is planning. I have asked for this several time with no fruitful response. So when I went to pick Makenzie up from school I made my request very clear. I believe that with out a plan there will not be good progress. I want the team to communicate with each other frequently to all be on the same page with the "plan" and I want to see it in writing. Each and everything tied together with a purpose for forward progress in Makenzie's education. I will address continue to address this until I feel good about the "plan" and then move onto the next point of concern.

After school Makenzie had therapy and did amazing! She is getting so good at reaching for things and pulling them back to her. She is lifting her hand up to put it on top of the object. Amazing! In PT she was so loose and putting great weight into her elbows and shoulders. She is also getting so much better at tall kneel. She is responding so well to direction and is so very proud of herself when she does something  well.  I am so proud!

Then it was off to Chili's to support St Judes. We had a great meal. We colored Peppers, talked, ate, and just had a great time.




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Makenzie coloring her Pepper.




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Josh's Pepper! He has a heart of  gold.....his pepper says.,,,, "Help Cancer Don't let innocent kids die" What a great kid.

The kids are all tucked into bed I am getting ready to do the same!

Believe...Prayer Works!

Chili's Big Night for St. Judes




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Shortly after diving into the blogging world I came across the site for a little boy named Ethan Powell. He was an amazingly handsome little boy with two amazing parents. However, Ethan was very sick. He had cancer. Ethan received his treatment at St Jude's Research Hospital.

On Ethan's web site his mommy and daddy had set up a chat room. This was a busy room filled with many sorrows and joy but one thing was for sure in this room, there was always prayer. I met so many wonderful people there! I cried many tears at all hours of the night with these women and also shared much joy. Silly as it may seem this cyber room and the many who frequented it got me through many of nights.

Sadly in April 2008 Little Ethan lost his battle and went to play in heaven. I would love to say that is the end of the story but is not. There are so very many children suffering from some form of cancer. Many of these children loose their battles to this monster every day. You can help though.

Tonight is The Big Day at Chili's. All profits will be donated to St Jude's. All you have to do is eat there! Easy Right? As Nike would say "Just Do It!"

Here is the official link to the event.

"As one of the world's premier centers for the research and treatment of pediatric cancer, St. Jude Children's Research Hospital® is renowned for its pioneering work in finding cures and saving children's lives. Chili's is proud to support this important cause through our Create-A-Pepper campaign. Each year we invite guests to create custom pepper designs and help St. Jude through individual donations. The annual campaign also includes a national one-day event where 100% of Chili's profits for the day are donated to St. Jude.



To date Chili's has raised more than $30 million for the children of St. Jude. It's because of the generosity of people like you that we are well on our way to our goal of raising the largest partner donation in the history of St. Jude — $50 million over a 10-year period. The money you've raised has helped change how the world treats children with cancer and other catastrophic diseases. Thank you for giving the gift of hope by supporting St. Jude."



BeLIeVe... Prayer Works!




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Sunday, September 26, 2010

Simple Moments

Today after a busy day, Makenzie and I cuddled up in bed. Makenzie was in her super soft fuzzy footy pajamas and just melted into my chest. The light from my phone charger was shining just right onto the wall. The shadows caught Makenzie's eye and she stared with much curiosity. So she and I played with our shadows.I waved, made shapes, we counted our fingers forward and backwards and sund little bunny Fu Fu.. Makenzie giggled so hard. I can remember playing with my shadow as a child and now I was doing it with my daughter.

It felt so simple. So comforting.

The other day when we were at dinner I was unloading the back of the van so  I could lay Makenzie down and change her diaper. Out of the corner of my eye I caught a couple and their 3 children. Both mom and dad had a baby on their hip and mom was holding tight onto her 3ish year old son's hand. I am not sure why I stopped what I was doing to watch them but I did.

As they walked across the parking lot I heard the mother talking to her son. They passed a Hummer and the mother observed out loud how big that car was. Her son replied with a very big smile and a nod of his head. Just as they arrived at their car she reminded him that he had a toy car just like it at home. Then the family loaded up and drove away.

It seemed so simple. So happy. It brought me back to a time not so long ago when I was having the same kind of conversations with my sons. Now I was in the parking lot changing my 5 year olds diaper. I felt jealous. I want that back. I want things to be simple. I want to relish in the things in life that slip by to fast. I want an easy button. I want more all cuddled up in bed shadow chasing moments with my kids.  So...........

Today I hired a nanny! She starts on Tuesday.

Shadow chasing simple moments here we come. I feel like a huge weight has been lifted. I feel lighter. I am still praying for financial means to make this work but I am trusting it will happen. I need some tangible relief. I need simple....er moments.  I will get it next week!

"Those who look to him for help will be radiant with joy; no shadow of shame will darken their faces. I cried out to the LORD in my suffering, and he heard me. He set me free from all my fears."  (Psalm 34:5-6, NLT)

Believe... Prayer Works!

Saturday, September 25, 2010

Rest Needed!

This was one of the longest days I have had in a LONG time!

I started the day by sleeping in a bit. That was nice but soon nice let way to fighting kids. They bickered all day. I asked them to help me clean up and I am pretty sure getting a tooth ripped out without being numbed would have been more fun.

My friend Erica showed up with her kids right about here and dropped Morgan and Ms Emily off so she could head to a wedding.

Right after she left there was the whole formula bath I wrote about earlier here.

So now I am covered in green mess and I need a shower. Morgan is fed and diapered and is fighting sleep. He did not want to cuddle or his pacifier so I put him in his car seat and rocked. I have done this a few times before after having 4 kids and all. It worked like a charm, He was out so I set him in Makenzie's room and headed to the shower. I had one foot in when I heard the first whimper and then he started wailing.

I managed to get a shower and Makenzie had a bath. Morgan finally fell back to sleep and all was well in the world.... for a moment,

After Erica got home we loaded up in the car to go get hair cuts. We are getting family pictures done in the morning and as with most things in life I left this chore to the last minute. Well really, this was the first time all week I had time but who's counting.

Well the salon was already closed for the day. Of course it was. That is just how we roll. So we will be getting pictures with mop heads. Oh well what can I say!

The plan was to go to dinner and karaoke. Dinner happened but Makenzie seemed a bit overstimulated so we cut the evening short and headed home. Makenzie had a really hard time falling asleep. I walked out of the room and she started to scream. She finally fell asleep but has been up on and off several times.

Just when I sat down and took a deep breath I heard a faint beep.... yeah now her feeding pump is acting up, If it tells me there is no food one more time I am going to cry!

Tomorrow is a new day! Please pray for a restful night! Pray that we can all get out the door on time in the morning and that the day goes smoother then today!

Believe.... Prayer Works!

Splish Splash... I Didn't Like That Bath!

Well today I did it!

Every morning I blend Makenzie's formula for the day. The VitaMix blender has more horse power then a table saw. When we were in Estes Park her blender shorted out the circuit every single morning. Point being it has a ton of power!

This morning while making her formula I pulverized the salmon, water, formula, turnip greens, and broccoli together. Next it was time for the Quenoia. I usually put the lid back on and turn it on low. Take the lid off and start adding the grain while it spins so that it doesn't get stuck to the side. This has become quite an art around here. The boys were bickering, Makenzie was getting restless, and Morgan was beginning to fuss. I was a bit frazzled and in a hurry.Well today I did it. I left the blender on high, I didn't put the lid on and then I turned it on. Much to my surprise it was not on low and Makenzie's green goulash flew EVERYWHERE! Splish splash I was taking a bath in salmon covered, broccoli greens! Yuck!

Deep breath in, deep breath out, deep breath in, deep breath out......

So I improvised. A little extra juice, a few extra scoops of formula and a small hand full of greens. Wah la! food for the day made!

My kitchen is clean... again and we are now going to go get hair cuts and out to dinner for my friend's birthday.

The Teenage Band Aid

There was no school today!

Makenzie had no therapy.

We had a lazy day! A very WONDERFUL lazy day!

About 4pm we headed out to run some errands. That was not so wonderful. AT ALL! This whole mood swing teenage stuff is so much fun!

However, when we got to the grocery store there was the most beautiful contraption.

Over in the corner of the deli purring a churning was...





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Did you know, ICEE's fix everything that is wrong in the world when you are 12?

Well they do!

Believe... Prayer Works!

Thursday, September 23, 2010

WHAT EVER It Takes!

Another day in paradise.

Another day of tears at school.

Another day of disappointments.

Another day of battles.

I feel like this whole week was spent in emotional turmoil. It was a roller coater ride of irritation, satisfaction, anger, relief, exhaustion, and small steps forward.

It seems to me like there was so much drama this week. Everything just came to a head at school. I was waiting for the other shoe to drop and this week it did.

I am trying really hard to stay positive but every time I walk in there I feel like I need a shield and sword. I feel like little ole me is fighting a giant. I don't want to fight. I just Makenzie to be treated like the adorable little girl that she is instead of some kind of politic.

It seems to me like everything Makenzie is red tape. She goes to school and her education is dictated by a bunch of paper work called an IEP. She has all kinds of specialist that see her at school and their time with her is also dictated by a stack of paperwork. When she goes out to the playground and what she plays is dictated by safety policy and if I hear the word reasonable one more time I think I am going to puke.The preferred phase would be "we will do WHAT EVER it takes!"

Makenzie is not red tape, she is not a stack of papers, she is not policy and reasonable is not a word we use around here. She is Makenzie, the most beautiful, smiley, precious, pink, princess, around.

Today I was told it was a safety hazard for Makenzie to walk across the bridge to get to the slide on the playground. As I stood there watching Makenzie at recess I sawnher sit in her chair while everyone else jumped rope and ran around playing. I lost it.... again. Now to clarify, Makenzie was not being ignored at all. Kids were talking to her while they jumped rope and her aide was there  but she did not get a turn. She did not get out of her chair. She did not play.

So I walked over and took her out of her chair and we played. We went down the slide. We walked. Makenzie laughed and this mommy felt better. I spent the rest of the class time sitting in the park thinking, venting, and just being pissed.

I picked Makenzie up. We went home and ate lunch and then headed back to the school with my army to meet once again with the principle.

The meeting went ok. I feel like he wants to work hard to make sure Makenzie gets what she needs. I know that the team of teachers do as well. This school is a good place for Makenzie. Now it is all a matter of pulling it together. Cutting the red tape and fixing the stack of paper work. I am not sure I am ready to trust. I am not sure I believe this will work. Reasonable is still not a word I like but I will compromise my phrase to say "what ever it takes... with in reason.."  I know I am being unfair by laying the baggage we packed up over the last two years at other schools, on this team. The current team  had nothing to do with the train wreck that we like to  call preschool.

I will keep trying. My efforts do not replace my feelings, my passion, or my expectations. It just means I am not giving up yet.It means that I love my daughter and will continue fighting for her even though I am tired of fighting.

It means I am dropping Makenzie off on Monday after the details of the conversation between the ILC teacher, the aide, and the principle are communicated to me. Not sure if this dropping off thing will last 15 Min's or 2 hours... we shall see.

Please pray for Makenzie's education.






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Sleep tight Princess! Mommy will take all the worries away.... no matter what it takes!

Believe... Prayer Works!

Wednesday, September 22, 2010

Do You See What I See?

We have been many places over the last 3 years.

There has been a lot of healing over the past 3 years.

Every time God has led us to different parts of the country I have always felt so much good has come out of each and every trip. Sometimes it has been in very different ways then I could have ever expected!

Yesterday I got the most wonderful call from my good friend Michelle who I visited this summer.

It all started in July when we headed to AZ for ABM.  We had been referred to Michelle Turner, an ABM practitioner in the Phoenix metro area.

Michelle Turner has 2 beautiful boys. I was so excited for her to work with Makenzie because she was a mom and understood what it was like to have children with special needs. Turns out her boys have had similar gut issues as my friend Michelle's son DJ.

We spent a lot of time with Michelle Turner that week. While talking about her boy's needs one day out came a  magic word... IVIG. This is a treatment I have learned a lot about  as DJ has been receiving it every month for almost 2 years in Phoenix 3 hours from their home. Most of this very pricey treatment  has also been paid for out of pocket by his family.

I dug a bit deeper knowing how taxing this treatment has been for my friend. I found out Michelle Turner takes her kids to a doctor who could get the IVIG infusions covered 100% through insurance and even better, it could be administered in the home. I was so excited.

As Michelle and I talked about the possibility of not having to travel or pay for this expensive treatment anymore the excitement bubbled up. However, we didn't let it spill over because there was still the hurdle of getting a referral to the doctor, getting the doctor to agree to  treatment, and then getting the insurance to  to pay for it. So no one was getting too excited yet.

Yesterday it was finished. The treatment which was costing my friend's family over $2000 a month will be administered to her son in their home, 100% covered by insurance! God is so good!

I tell you all of this because it is so overwhelming too be able to  look back and see God's power and plan. If we hadn't gone to AZ for therapy none of these connections would have been made. My friend would still be making the trek 3 hours into Phoenix every month to dish out more money on one drug then a whole mortgage for most people.

I  love being able to see the bigger picture. It is so humbling to see how our tragedy and journey has touched the lives of so many others. Maybe our trip to AZ wasn't about all Makenzie but boy was it ever worth it! Pretty amazing stuff!

On a side note..... we are still working on the school stuff. Tomorrow we are meeting once again with the principle. The plan is for Makenzie to attend school by herself on Monday. As long as we are all on the same page with Makenzie's health plan and a few other concerns I still have, I am ok with this. I will continue to drop in at my leisure to make sure they are moving forward with Makenzie but I think we are getting close.

Keep Praying for MIRACLES!

Believe... Prayer Works!

Tuesday, September 21, 2010

The Royal Beep!

I had a blog all typed up about school and blah, blah, blah that I was going to post until I went to another mothers site and found a video that sparked laughter and a reality about what it means to advocate for your child.

This mommy has a little boy named Austin. She is an amazing single mommy who has given her son a very loud voice. Austin had surgery on his jaw recently and is in a lot of pain. They have not been able to stay on top of the pain and Austin is not very happy. Austin's mommy posted this video today describing how she advocated for her son on this issue.



I laughed so hard. I watched it again and began to think about how true that very short video is for in many areas of life when raising a child with special needs.

I have joked so many times about turning into a crazy woman when dealing with many things that involve the care and well being of Makenzie.It is like Dr Jeckle and Mr Hyde. I have found myself in a fit when it comes to Medical care, SSI, early intervention, school issues, therapy services, Durable Medical Equipment, nursing, alternative treatments, medications, and the list goes on. It seems like playing nice in these situations gets you no where FAST! But..... Loud and demanding does. Persistent and annoying does. I have even found myself on at least one occasion yelling at the top of my lungs just like Shirley McClain in the short video above.

It really sucks. It is not something I am terribly proud of but it has gotten Makenzie what she needs. If that is what it takes to be heard then that is what it takes. Mama bear is in the house.

Fighting all the time for everything is exhausting but so worth it. Makenzie has come so far. Each and every battle was well worth it. I just wish I could be heard with out having to turn into a royal... you know what. That would be a nice change.

Maybe the tide will turn beginning tomorrow at school! Cross your fingers! I believe it could happen!

Believe... Prayer Works!

Fear Not.... Update

                            ---------------------UPDATE-----------------------

Makenzie slept ALL night! I laid her down at 7pm and she did not wake up one time until 7am this morning! Yeah!!!! Thanks for the prayers!

                            --------------------------------------------------------------

I remember 3 years ago very clearly after a night light last night.

When I walked up stairs to start Makenzie's water and found her wide awake I sighed and set the water down. (she doesn't do well with water while she is awake but has no issues with is at a very high rate while she is asleep... I don't get it but oh well!) When I climbed in bed with her I had no intention of falling asleep but that is just what happened. Then when I woken up I was in a panic. I hadn't started her water! Then I rolled over and she was awake. I asked myself if she had slept at all. I was concerned. What the heck was going on. This wasn't like my girl.

As I rocked he to sleep I began to think about these kinds of nights 3 years ago. There were MANY of them. Probably more then there were not. I remember calling the doctor, calling the hospital, praying, and loosing so much sleep.

So much has changed. Yes, I was curious about what was going on with Makenzie. I was a little panicked about the water issue but  there is no utter fear anymore. I took it in stride. I know now the sun will rise and our day may look different then I had planned but in the end Makenzie will be ok.

So today Makenzie slept in until almost 10:00am. I was not about to wake her up! We played hooky from school which made me giggle after what happened on Friday. She got ALL of her water and most of her food. She has been super happy all day and I so feel good about the fact we have both come so far! I am so happy the day's of yesterday are just that, yesterday. Even though I am still an over paranoid, over protective mommy I do not live in constant debilitating fear! This is such a gift!

Together we cleaned up a bit. Had Speech therapy and OT, rocked out to some Train, and had our first nanny interview!

I am getting ready to do the bedtime thing with Makenzie. She just finished dinner and has been sitting in her chair yawning. I think that is a good sign! I hope! Please pray for rest. Pray that lask night was just a fluke and for a better night tonight!

Tomorrow we will be back at school. Makenzie's OT will be joining us to give everyone there some extra ideas. I will also be meeting with the principle to form a transition plan. Lets just say I am not looking forward to this at all! At least I can be prepared unlike the last conversation I had on this topic. Oh, and please pray for the poor principle who has to deal with me in the morning! He will need ALL the prayers he can get! LOL

On a side not here is a short clip of how spoiled Auntie Pam has made little Morgan! He is growing up so fast! Sorry about the sideways action but I have yet to figure out how to mount my phone to the computer to flip it.



Believe... Prayer Works!

Monday, September 20, 2010

Sleep Walking

I had a whole post almost written when I went to check on Makenzie. She was wide awake in bed at 10pm. I am not really sure if she even fell asleep but I never heard a peep out of her in the monitor after I laid her down to bed.

I rolled her over and she gave me the big pouty face so I laid down with her. I closed my eyes and fell asleep. At 3am I popped straight up in bed. In the moment I had no clue what time it was but I knew I hadn't started Makenzie's water nor given her night meds. I turned and looked at Makenzie and there she was again looking right at me WIDE awake.

I rolled her over and got up to get her stuff ready hoping she would go back to sleep.... or maybe just to sleep period. No such luck. So I crawled back into bed with her. I gave her meds and held her until she finally fell asleep. I was able to start her water and sneak out of the room.

I have debated for the last hour whether or not to go back to bed. I have to be up in 2 hours to get the boys off to school and I really don't want to wake Makenzie up with my alarm clock so I guess I will stay up. It is going to be a LONG day!

I am going to let Makenzie sleep until she wakes up. I am not sure she will be going to school this morning but I need her to get her water and sleep! Pretty funny timing as I am sure school will question why she really  is not  there after what happened on Friday. Funny stuff but oh well..... life happens!

The prayer for today is to simply be able to make it through without falling asleep standing up!

Believe... Prayer Works!

Saturday, September 18, 2010

If it Ain't Broke.........

Please excuse my mess. Clearly my web designer is having issues that hopefully will be resolved soon!

I have laughed harder today then in I have in a long time.

This morning I spent a bit of time doing 4 phone interviews with people who responded to my add for a nanny. I am really excited. All of them sounded really nice but one stood out. She has over 10 years of experience and some of those years were as a caregiver for wheelchair bound people. She is also certified to do g-tube feeds. I am so excited to meet her. What where the chances that I would have come across someone with those kinds skills?

Shortly before I finished my last call, my friends little girl came to me with the iPad in hand. She asked me how to put the piece of plastic back on.... Crap. The corner of the Invisashield had been coming off so she had tried to "fix" it. It now had plastic bubbles all the way to the middle of the screen. Then her little sister  took it all the way off. No biggy, it has a life time warranty.

There were no other plans on the book so we decided that we would go get it fixed today. No one was touching the iPad until it was protected once again. I tried to call the store before we left because of the experience I had the last time I went down there. ( I wrote about that here) however their phone line was not working. so we all headed out to the mall anyways.

We loaded 3 strollers, and 4 kids into the car and then unlaoded when we arrived. It was lunch time for Makenzie si I started her feed before we walked in. We walked into the store and I pulled the iPad out. Before I could even get one word out the sales man told me they were all sold out of front covers for the iPad. Needless to say I was not happy and left my number for the store owner to call me back. I had them call a different store at a different mall across town and we found front covers.

We decided to go ahead and travel there with our whole brood but Makenzie was still eating so we had about an hour to kill before we could leave. It turned out really good. We had lunch, and did a bit of shopping. I got a really good deal on jeans for the boys and we headed to the car and across town.

Needless to say the iPad has a new sheild on it tonight. This seemingly simple task only took 6 hours but I am sure the kids will be happy they can still play with it and we had a really good time in the process!

Shortly after we got home it was time to put Makenzie to bed. I laid with her and she was so giddy. I sang and she laughed, When I went to put her down on her pillow she just kept laughing. She was kicking her little legs all over the place and squealing at the top of her lungs. This went on for over 30 mins. I laughed and laughed with her. It was an amazing time spent with Makenzie!

After she settled down a bit I kissed her goodnight and settled into my couch. While Erica and I were killing time at the mall I downloaded an app called Talking Tom onto my phone so we decided to try it out. I laughed so hard I cried. Tom hears everything you  say and repeats it back  in the funniest most obnoxious voice. We had downloaded it for Makenzie but I think I am going to have more fun with that one then she is! LOL

Laughter is truly the best medicine.

Believe... Prayer Works!

Friday, September 17, 2010

Oh Me, Oh My

Do you ever feel angry about something but not really know where to go with that feeling?

Today one of the school district employees whom I have dealt with for about a year showed up at the school to see how Makenzie was doing. We got to talking and he told me that on Monday Makenzie needed to come to school alone. Hmmmmmm.  Here comes angry..... and concern.

But where do you direct the anger and concerns? There are so many people involved. To make a list... cause I am good at that we will start with the teacher, then comes the aid, special ed teacher, OT, PT, SLP, Mental health (what ever that is) art teacher, music teacher, tec teacher, library teacher, gym teacher, nurse. substitutes, AT team, brain injury team ( the team we have still have yet to meet in over 2 years of school ), the lower district people, and the higher district people.


These are all people who have control over Makenzie's education, and most of them have daily contact with my daughter.

I told him I didn't really feel comfortable with leaving yet as there were still  concerns I had, some of them being safety issues. When I am ready I will leave. When I am ready not when a group of people who have known Makenzie for 3 weeks think they are ready. They have done a GREAT job and I can tell they love Makenzie but there are still things that are not working for me. Such as....






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See Makenzie.... way in the back..... yeah..... not ok! I took that picture today after they told me they were ready and knew what Makenzie needed. This picture of the class, in circle time singing a song, shows me differently. This happens to be Makenzie's favorite activity in the world. She LOVES to sing and if she can dance and move it makes it all the better. So why she is sitting still, on her own little island away from all of her friends is beyond my understanding.

If the simple stuff is hard, how am I to trust that the harder stuff is going to get taken care of? I was told today that I don't need to fight every battle. I am sure it was said with the best of intentions but....  when Makenzie can come home and tell me her feelings were hurt because she felt left out, or her legs hurt because she walked to much, or her tummy hurt and she threw up, or she colored with the red crayon but really wanted the blue crayon but her aide couldn't understand what she wanted because she has no way to consistently communicate her needs at school, then and only then will I stop fighting every SINGLE battle. I will not stop advocating for my daughter and will also not apologize for doing so.

When we got home I sat down with Makenzie and cuddled. Oh did that ever feel good. I was expecting a call from her teacher and I waited. I was starting to think she was not going to call when the phone rang. We talked.... for a LONG time. We talked about what happened, we talked about what my concerns were, we talked about solutions to the concerns, we got way off topic a few times, and in the end I absolutly LOVE Makenzie's teacher. I loved her before but now I know without a doubt Makenzie is in just the right place.

After  that I called the principle and asked him to please ask the district to have Makenzie  removed  from the said district worker's case load. This man cares deeply for Makenzie. He has said so and I believe him but this is not working. He doesn't understand me and I don't get him. His job description is not even with a child Makenzie's age. He asked to continue with her and they allowed it. Not gonna work.

So together the principle and I came up with some ideas. We compromised and in the end all parties are safe and happy. Did it really have to  be that hard?

After that I got a call from my auto insurance company to tell me that my insurance had gone into cancellation. This confuses me because I have made every payment. I had added a van and removed a truck about 2 months ago. It took me three times of calling to get the truck taken off the policy and the premiuim had to be retro acted. When I talked to the agent earlier this week he told me everything was fine. All was well.

Today however, all was not well and by 5:15pm they were still demanding over 4 times what the bill was to re instate the coverage. I made them go over everything about 10 times before they finally conceded that it was an agent error and then put me on hold for another 20 mins to consult with a supervisor to fix the issue. According to the supervisor all is well. Not sure I believe that and am a bit scared to drive until Monday.

My head hurts, I am exhausted but with some persistence I was able to resolve all of our issues... for today! It was VERY time consuming and nothing else got done around the house which stinks but oh well.

Tomorrow is a new day.

"Dear brothers and sisters, whenever trouble comes your way, let it be an opportunity for joy. For when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be strong in character and ready for anything."

(James 1:2-4, NLT)

Believe... Prayer Works

Thursday, September 16, 2010

Mish Mash

I have a feeling this post is going to be all over the place so I will apologize up front..... I am sorry!

Makenzie has done a ton better the last couple of days in the tummy department. Yeah God! The beginning of the week was really rough. I was so stressed I started loosing my hair in big clumps.... just kidding. Really though it was not good.

I think the reason it was so bad is because I introduced a few new foods to her diet and took her completely off of the formula. I gave it a go for about 4 days and each day got a bit worse and she was beginning to get constipated, so I stopped. On Tuesday I put the formula back in and is was night and day! Makenzie has done the BM thing 6 times in the last 48 hours, very little reflux and no vomit. YEAH! The other thing that may be helping is that we added her prevacid back in on top of the Zantac.... who knows but I will take it!

On another feeding note.... another special needs mommy wrote a post here about whether or not she was going to choose to put a G tube in her son, Nathan. That is such a TOUGH disicion! She posted a site which has a growth chart that adjusts depending on how much movement your child has as well as how they are fed. So today I hopped onto the site and by the looks of it Makenzie is doing SO well!

According to her last weight check on the unmodified charts she is in the 5th percentile for weight, the 75 percentile for height, and her Body Mass index is at 53.88% percent which is already perfect. On the modified chart she is right at the 20th percentile mark for weight, the 50th percentile for height, and her BMI is at 50% as well. PERFECT!

I know these are just charts but it make me feel good to know  even though there are still some rough days Makenzie is right were she needs to be! Yippy!

Moving on to school and speech therapy!

Makenzie is doing so well in school. The one thing we are still struggling with is communication. Makenzie has so much to say but finding a consistent way for her to say it is the hard part. So today during speech therapy at home we spent the hour brain storming and reconfiguring Makenzie's talker to work better for her at school. I really think we came up with some good ideas that will work much better.

The other problem we are having is with switch access.  Makenzie still does not have a chair that is able to  mount her switch and talker to. I worked on this issue ALL summer.  Eight weeks ago we went in to have her evaluated for an Aspen Seat and we are STILL waiting on insurance approval. No one has heard one word about an approval nor a denial so I am hoping no news is good news! Until she gets her chair we will be trying some lower tech stuff at school.

The weekend is approaching and I am pretty sure I do not have anything planned for once! YEAH!! Please continue to pray for healing in Makenzie's gut! Pray that we get some good news on Makenzie's chair so we can move on to bigger and better things at school and shout out a thank you Jesus for the awesome growth Makenzie has made despite it all!

Believe... Prayer Works!

No Internet + No Cable = No Blog Post about Math..... Until Now

Makenzie and I (hehehe) had a great day a school today. It is still very hard for both of us to get up in the morning and get everything done on time to be at school but we are and she loves school.

I go to talking to another parent at the school yesterday about curriculum issue I was having with the math program. It was so nice to know I am not the only one frustrated.

My oldest son is struggling with Math. Not because he can't do it but because he was taught math the wrong way. Maybe it was a good way in elementary school but they don't teach it that way in middle school. They won't teach it that way in high school or college either. I talked to his math teacher and she doesn't know the Everyday Math Program. This make no since to me because every single child that filters into the middle school has been taught that way. Hmmmmmm? I have some requests in for an administrative review of this issue so we shall see what happens!

In the mean time I am going to start teaching my 4th grader the "real" way to do math. I have heard the teachers are not very receptive to this idea but well in short..... I don't care!

I have been working on going through the 20 plus people that responded to my job ad for a nanny. I am hoping to start with some phone interviews this week. God is providing. I think I have secured about 50% of the funding I will need on a monthly bases to be able to make this work!

I am so excited! I am so ready to just enjoy my kids for a while instead of being all tied up in EVERYTHING that needs to be done! They are growing up so fast. I am sad I have missed so much but by the GRACE of GOD that is going to change!!!!

Last night I had some technical difficulties with a cable and Internet outage so I tried to get to bed early. That did not work out so well but at least I tried!

Right now Makenzie, Kaleb, and I are blogging. (ok I am blogging) We are listening to train and Makenzie is laughing her head of watching Kaleb dance. Therapy will start soon, Kaleb will have to leave for school and the day of craziness will offically start! Here we go!!!!!

Believe.... Prayer Works!

"Wisdom is more precious than rubies; nothing you desire can compare with her. She offers you life in her right hand, and riches and honor in her left. She will guide you down delightful paths; all her ways are satisfying. Wisdom is a tree of life to those who embrace her; happy are those who hold her tightly."

(Proverbs 3:15-18, NLT)

Tuesday, September 14, 2010

We are Loved!



Some one shared this little ditty today on facebook. I love it! It is so simple, cute, and even better right on. (Thank Elmo!) I am doing the best I can in this life and I will continue to learn, grow, and get stronger! Nothing is going to get me down! Makenzie loved it as well... hehehe. Sesame is her favorite!

Makenzie and I skipped school this morning so I could take her into the doctor. I have been feeling very frustrated with her feeding and wanted to vent and find out what he thought and what we should do, It was a really good appointment. I love these doctors! Even though I am sure they think I am crazy they sit and listen. They know what I want for Makenzie and they do their best to stay on that track. I never thought I would say this but that appointment was the highlight of my day.

As soon as I got home I found a little pick me up package on the front porch from a good friend. Just what I needed! It is the simple things in life that make you feel so loved! Thank You so much Cindy!

As if that was not enough love for the day after therapy my mom came over and helped me get my house back in order and my laundry done. She brought dinner and fed the boys along with Grandma Linda while I gave Makenzie a bath. I love my village!

The boys are taking showers now. The house is clean and in 47 min the house will be all mine! Ahhhhhhhhhh, sigh, Ahhhhhhhhhhhhhhhhhh!

Thank you for all of your thoughts and prayers! Hard times are hard but the good time are that much better! Change is in the air and I welcome it! Please pray for Makenzie's tummy issues.

Believe... Prayer Works!

Monday, September 13, 2010

The Quest for a Nanny

The last week has been just plain yucky. I have hit the proverbial wall and have got to make some changes. Every time this happens I go back to the same solution.... hiring a nanny.

The hardest more frustrating part of my day is the afternoons. The boys come home from school and need help with homework, want a snack, need showers, Makenzie needs to be fed, bathed, blah, blah, blah, blah, blah, blah, and I just can't get it all done. I have no time to keep up with everything and still fell like I can breath and after over 3 years of this I am DONE! Ok.... not done done but done doing it all by myself.

I have a great support system but they can not be at my house every afternoon to take the boys where they need to go, cook dinner, do laundry, help with home work, make sure everyone has bathed, and the house is picked up and somewhat clean.

I am so thankful for the occasional meals, the help around the house, the help caring for the boys and the list goes on and on and on but I really NEED something more consistent. Like as in every single day.

I have tried to be super mom/dad/woman for far too long and I am now going on strike! hehehe I will still be super but just not as busy!

I have no clue how I am going to pull this of from a financial point of view but I need it to work. Please pray that God will give me the means and that I can find just the right person for my boys and maybe even Makenzie here and there! Just thinking about this idea makes me giddy! To me it is the best thing that could happen! I will still be here and be a part of everything but the weight of carrying all of the responsibility alone will be lifted! God is good and He will provide!

So for now I am going to go back to my nanny finding quest but I will leave you with a few pictures of my beautiful Makenzie! She had a pretty super day!

Believe.... Prayer Works!





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Saturday, September 11, 2010

Remember and Reflect




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Sept 11, 2001 was just like any other Tues. I had packed the boys up in the car and we were on our way to bible study. When we got there I dropped the boys off at the nursery and headed down the hall. When I got there one of my friends asked if I had heard. Heard what? My jaw dropped when she told me what was going on.

We all huddled around the TV watching the first tower burn. As a group of women sat watching 9-11 unfold before our eyes we cried and prayed and cried some more.  I had no concept, at the time, of the ramifications of what had just happened but I was scared!

They grounded all the planes and the sky's were clear except for one plane that night. A plane my uncle flew across the country carrying blood to ground zero.

Over the next several days I tried to protect my many small children from seeing the horrible replays of the event that took so many lives. There was no getting away from it. Not that I wanted to pretend it hadn't happened but I just wasn't sure my boys could even begin to understand or handle seeing it. I wanted them to know ...or at least think they were safe.

We did talk about it. They talked about it at school and today they know the history of that day. That day may be history but it will never be forgotten.  Never!

Today I spent some time watching tributes to all men and women who lost their lives and the people who loved them. I prayed for them and for this country. Even 9 years later I can remember that day vividly and will always remember the people who lost their lives and those who continue to fight for our safety and freedom! Thank You!

Makenzie had a great day! Mommy had a great day. It was a great day! We rememberedand reflected, we spent time together and with friends, there was no puke, there was lots of smiles and laughter. It was a good day!

Believe... Prayer Works!

Friday, September 10, 2010

There is Nothing More Healing Then a Thankful Heart!

Today was a great day. Well it started out great any ways.

Makenzie had breakfast and lunch with NO issue at all. Days like this make me so happy. Then during dinner it came. Projectile.... out of no where.  I was so pissed! I know Makenzie can't help it but God can. I yelled at God out loud. It wasn't very pretty. I asked Him over and over what he wanted from me. I have done everything. I deal with brain injury.... as if that isn't enough. I have trusted Him through this so I pleaded with Him to just make something in my life easy.....

Then it happened again. As I laid down next to Makenzie in bed I laid my hands over her belly. I claimed healing. I acknowledged the fact that he was the only one who could completely restore Makenzie.

I picked her up to sing our nightly rendition of  "Jesus Loves You". She smiled and then started the pouty face.... another nightly tantrum ritual as she knows this marks the end of  of her day. I tickled her and she smiled and I began to sing. She filled in the usual blanks with her loud beautiful voice and together we proclaimed Christ's love for us in 5 year old fashion.

When we were done I put Makenzie down on her pillow and plopped the paci in her mouth. I gazed into her big blues again, and again she grinned from ear to ear. Makenzie started to babble in her I'm really cute please don't leave voice and she drifted off to sleep.

Then God spoke to my heart in a very load voice. What I heard was "Be Thankful!!!!"  Hmmmmmmm. So I did. I started listing all the things I was INCREDIBLY THANKFUL for......

Makenzie can smile
Makenzie can laugh
Makenzie is happy
Makenzie can see
Makenzie can hear
Makenzie is learning
Makenzie sleeps all night
Makenzie can put herself to sleep
Makenzie is growing.
Makenzie can breath without help
Makenzie loves to walk with mommies help
Makenzie is healthy overall
Makenzie loves her brothers and can show it
Makenzie know who I am...her mommy!
Makenzie can roll
Makenzie can swallow and gag
Makenzie can eat orally
Makenzie can hold her head up
Makenzie is using her arms and hands more and more
Makenzie can use a talker
Makenzie understands everything you say
Makenzie can play games on the computer and iPad
Makenzie can sit unassisted for a period of time
Makenzie can track with her eyes
Makenzie can weight bear through her arms, shoulders and legs
Makenzie loves to play games
Makenzie knows that the swing and slide are fun
Makenzie can ride on a roller coaster and smiles every time I ask if she loves Mickey Mouse
Makenzie has changed the hearts and lives of people all over the world!!!

WOW!!!  THANK YOU JESUS!

I will continue to trust and pray that eating will become an issue of the past! I know God can move this mountain in our lives! He has given our family so much to be thankful for and I know God isn't about to stop now!

I watched this video again tonight and sat in utter amazement! Makenzie has truly come so far!



Thank you all for hanging in there with us!  Keep praying for healing!

Believe... Prayer Works!

Thursday, September 9, 2010

Melt Down

"You have allowed me to suffer much hardship, but you will restore me to life again and lift me up from the depths of the earth. You will restore me to even greater honor and comfort me once again."

(Psalm 71:20-21, NLT)



I am sitting here tonight looking at my white screen. I am not sure what to write. It has been a long day. Not bad.... just long.

There are days when I hit the wall. When I am so tired, overwhelmed, frustrated, and irratated that I can't see straight.  I feel like the sky is falling and nothing is right. Today was one of those days. 

Today I felt jaded by all of the responsibility raising a child with special needs brings. Jaded that I am doing it alone.  Jaded that I can't just pick up and leave the kids with grandma and go on a girls weekend to Vegas or out to lunch for that matter.  Jaded that I have no time for me. Jaded that my boys have had to go thru all of this. Jaded this all happened to Makenzie.  This is not how my life is supposed to be!

After all of the rum drum of today Makenzie and I headed up stairs to get ready for bed. I sat Makenzie down in her chair and she began her nightly temper tantrum, Makenzie loves the bath but she HATES mommy's shower before the bath.

As I stepped into the shower Makenzie started the pouty lip. Then she moved onto breath holding followed by wailing. I started singing Splish Splash to her in the silliest voice I could muster at the top of my lungs. Makenzie looked at me and gave me a huge smile and started belly laughing. I continued singing and she continued laughing,  

I stood there looking into her big blue eyes and everything just melted away. This is hard but if Makenzie can be so strong and happy how can I be so upset? Why am I letting all of the unfairness of life get under my skin? Yes this is all unfair but that is just life.  This is something I have been telling my children forever but it is still something I need to be reminded of sometimes!

I will melt down again. It is inevitable but it will be short lived and I am looking forward to what ever craziness tomorrow brings!

"The LORD is my shepherd; I shall not want. He makes me to lie down in green pastures; he leads me beside the still waters. He restores my soul; he leads me in the paths of righteousness for His name's sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil; for You are with me; your rod and Your staff, they comfort me. You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup runs over. Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the LORD forever."


(Psalm 23, NKJ)

Wednesday, September 8, 2010

1,2,3,4 Peek-A-Boo

A couple of nights ago my friend called. She wanted to know if she could feed her son Neocate (elemental formula) because she had left his formula that she uses on occasion to supplement breastfeeding. I didn't see why not and told her where to find the mixing directions for 20k kals per ounce.

Thirty minutes later she called again. The first thing she said was.... "you have got to get Makenzie off of that formula!"

" I know... but why? I asked back.

" Morgan puked..... he puked it all up!"

I told her my dilemma about replacing the calories from the formula and she jokingly answered...."just give her a twinkie or two... every 5 year old eats that stuff!"

Yeah well I am not going to blend up a twinkie but it sure did get me thinking. So this morning I made some fresh almond milk. It has a ton of calories and was super easy.
instead of the formula I assed in the milk and guess what........ today went WONDERFUL! Still a bit of reflux but nothing compared to usual!

I am going to try this for the next few days and if she continues to do well I am going to try coconut milk, and sesame milk as well. Both have a good amount of calories and it will fit into Makenzie's rotating diet.

Then it was time for PT and once again Makenzie worked so hard and looked so good!

We headed off to school and had a great day. Makenzie is still doing super well and she LOVES being there. All of the kids in her class love her and although it does not surprise me it still makes my heart sing. Today I brought her walker into class and we tried it on the playground.  She had 4 little girls standing all around just cheering her on! LOVE it! These moments are why I have fought so hard for this school thing to work! Makenzie is so smart and so social.... school is the perfect place for her to grow!




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We are still ironing out all of the integration stuff but her teacher is AMAZING, her aide is AMAZING and so willing to learn, and the specialists believe in her and are working so hard to help Makenzie show us more and more every day how smart she truly is!




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After school we ran home, had lunch, and loaded back into the car. We got the emissions done on the van and then raced to round two of PT. Once again AMAZING! She was reaching while sitting on a bolster, and playing peek-a-boo with me while in all fours! WOW!!!



                               










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Back to the car we went. Now we were off for part two of getting license plates.... the DMV!!! YUCK!!! It wasn't horrible. We handled our business and withing 30 mins of walking in the door we were done and back in the car again.

As if that wasn't a full enough day when we got home Morgan and his sister were waiting for us so that their mommy could attend a wedding. While Makenzie was eating dinner and Morgan was sleeping I managed to get dinner cooked, 2 loads of laundry sorted and put away. After an assembly line diaper change Makenzie was off to bed, Morgan and Emily were headed home, the boys were watching a movie, and I was sitting down..... oh wait nope not yet.... I was cleaning the kitchen.... again!

But none of that mattered because I got Morgan to belly laugh for me again! Have I mentioned how much I love this baby!



It was a very full day to say the very least but it was one of the better days I have had in a while! I prayed for another good one and boy did I get it! I  also asked for gut healing and I think we are on our way! Please keep praying for Makenzie's gut! Pray, Pray, Pray!!!

Believe... Prayer Works!

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