Monday, January 30, 2012

Winter Sickies

Let me just tell you that the H1N1 Flu stinks.

Makenzie is feeling much better today.

It has been a rough few days. Makenzie has been very fussy, needy, congested, whiny, tired, and uncomfortable.

On Saturday evening I thought I was doing Makenzie a favor by giving her a nice warm bath in the evening before she headed to bed. Oh how wrong I was. Makenzie cried huge tears and flexed her whole body through every step of undressing, bathing, dressing, and hair doing. She has been very jumpy and the littlest things have brought her to tears. She has been up several times a night in coughing fits, and needing to be changed. I have not been allowed to walk away from her but even still Makenzie continues to laugh and smile through it all.

Today Makenzie seemed to turn the corner and is feeling much better. She did great with tolerating her food, smiled, laughed, tagged along to her brother's hockey practice, and still had energy left over to give me a run for my money at bed time!



What is left of the flu seems to be some congestion and coughing..... mostly at night...... like right now.

I hate for my little princess to be sick but it is times like this that remind me of how lucky this family is. How lucky we are that Makenzie can get the flu and be ok. How lucky we are that she can cough and clear her secretions. How lucky we are that her immune system fights so hard to kick a big virus. We are so lucky to be at home when something like this causes so many others an extended trip to the hospital. To God be all the glory!



This bug also seems to be highly contagious. As of this moment I know of two people who we had contact with right before Makenzie got sick have come down with the same flu.

The crazy thing is that both of them have received the flu shot. We do not do the flu shot for this very reason. The one year we did get the shot we all still got the flu topped off by strep throat. I choose not to take the risk of side effects from a vaccine when chances are we will still get some from of the flu anyways!



If you will send please out a prayer of healing for my grandpa who is not in the best health and feels pretty crappy right now.  I feel horrible that we exposed the people we love. I really had no clue that Mr. 12's cough earlier in the week may have been the flu. I guess he is a rock star because that is as bad as it got for him..... a cough!



Pray for restful sleep tonight for all of my kids! Pray for continued healing from the winter sickies!

Oh and on a side note the pictures in this post are from a visit Makenzie and I had a few weeks ago with Miss Stephanie who was in town for the weekend! Makenzie had to show off her talker and her new wheels!!!! Man do we ever miss our friend so very much!

Believe.... Prayer Works!

Saturday, January 28, 2012

3 Doctors, 2 Days, and Some Answers

It is 2 am. I am sitting at my computer blogging because if I sit on the couch I will fall asleep.  I can not fall asleep because two of my kiddos need fever reducer in forty five minutes. So if this post is full of errors of does not make any since it is because sleep is something I have not gotten much of in the last few days! Sorry!

I have spent the last two days in the doctor's office, the ER, and urgent care.

On Thursday morning after OT Makenzie spiked a super high fever out of no where. I gave her some Motrin and made an appointment at the pediatrician. When we got there with Motrin on board she was still running a 102.4 fever. Strep and Flu cultures came back negative. Breath sound where great and a just in case chest x ray looked normal. Her blood count was in normal range as well so we headed home with the just a virus diagnosis. My least favorite!

However, this morning Makenzie looked worse which landed us in the ER at 6 am. After a repeat chest x ray, oxygen level monitoring, and testing for a UTI we left there with another just a virus diagnosis.

When we got home I called her primary doctor because even though Makenzie was recorded to have oxygen levels in the 95% area her lips, fingers, and toes were a very brilliant blue color. Not so good and a bit concerning considering that is not at all normal for Makenzie.

We both decided that it was best to let Makenzie rest with Motrin, Mucinex, Tylenol, pedialyte and a bit of blow by oxygen. Her lungs were clear and she was not struggling to breath and slowly her color returned.

When she woke up from her four hour nap she didn't seem much better and to top it off my oldest came home from school looking just about as bad as his sister. I called the doctor again and asked if another flu test should be performed and it was agreed that it should.

I took Makenzie to the Urgent Care this evening and low and behold her flu test came back positive. While I don't want my baby to be sick, answers were very relieving.

So tonight I will not be sleeping much. Tonight I will be standing over my angels and making sure they have everything they need. I picked up two prescriptions for Tamaflu and hope that will help kick this bug a bit quicker!

I find it almost hysterical that the Children's hospital would check for a UTI and do a repeat chest x ray but not check again for flu considering I told them she had only been sick for about 4 hours when the first culture was taken and her runny nose had not started until after we got to the hospital. I really am so sick of that place. I know they do good work and they want to help not harm but in my experience lately they have been less then completely throe and listening to parents is not something they do well at all!

At the end of the day thanks to our pediatrician with a bit of assistance from the Urgent Care we now know what is wrong and that is what matters. Please pray for a good nights sleep and a speedy recovery for both Makenzie and Mr 14! Please also pray that I do not get this! That would be very bad!

Believe.... Prayer Works!

Tuesday, January 24, 2012

SavingsAngel and More Money in My Pocket!

On Friday night I could not sleep for several different reasons but the fact that Makenzie's pump kept alarming and I had to keep resetting it so she could get her water was the main reason. While I was not sleeping I ran across this picture a friend had posted on facebook:


All this cost... drum roll please... -7.05. They paid me 7.05 in cash to buy this stuff. Thank you Publix

I kept scrolling through her pictures and found mega deal after mega deal.
 
So in my delirium, this woman (me) who has never touched a coupon in her life decided to search out my local resources for COUPONING! Yeah..... I was bored and very tired!

I googled every form of  coupon bloggers in my state that you could think of and finally came across a site that looked promising.

I signed up for the site SavingsAngel out of shear blind faith and started watching some of the video tutorials. My head began to pound from staring at my computer screen for so long, shear exhaustion, and a feeding pump that was still beeping! So I kept plugging on in my quest to learn how to save some money on a food bill that is becoming out of control with 3 growing boys.

Within about an hour my printer was warmed up and spitting out coupon after coupon. I was excitedly putting together a list of things that we could use at super cheap prices. By mid morning I had a list all put together and I was ready to try it out!

Needless to say it worked and Makenzie and I had a great time shopping together! No one paid me to shop but I did really well considering I started out with ZERO coupons just hours earlier.


I  bought all of this for $73.36 and saved a grand total of $153.78.

My trip included 12 boxes of fruit roll ups for $.50 each. 8 bottles of Cranberry Naturals for $5.36. Four 12 packs of Pepsi for FREE, 2 rolls of paper towel for FREE, 8 boxes of cereal for $.88 a box, and the list goes on.

I am hooked.

On Sunday when the Target ad came out I went back to SavingsAngels and with 20 minutes I had another list put together.




This time I spent $29.41 and saved $51.82

This included 12 Marie Calender's meals for $1.29 each, more free paper towels, Valentines for Mr. 10's school party at $1.79 each, 5 cans of spaghetti O's for $.46, apple juice, and crackers.

In two days SavingAngels has not only helped me save a ton of money but has changed the way I see spending my money.

Even better it is super easy. SavingsAngels does all of the work. Here is a one minute sample of their site.

First you choose your store:




or you can choose your state for the listings of all of the stores in your area:



A list will then pop up with the deals from that store or stores for you to review.



The deals are listed by store, product, then coupons available with direct links to the printable ones and an index for the coupons found in the paper through Smart Source and Red Plum. Then the retail price, sales price, and final price with all coupons is listed. When you click on the box next to the item you would like to purchase it saves your selections and puts together a shopping list that looks like this:


Once you have printed and clipped your coupons (which doesn't take long once you understand the system) you can update the quantity based on the sale and coupons. When you are done updating, SavingsAngels will give you the Total amount you should spent and the amount you will save. Print your list, grab your coupons and you are ready to save.If you have any questions they have a live chat....which I tried tonight and they were able to answer every single question I had........ and mentors which can be reached by phone.

I paid $20.00 to join SavingsAngel with opportunities to make that money back too. I saved $200.00 on stuff we need and will use. I have been told that for a first coupon trip that I did really well.

I bought 5 Sunday papers to start collecting coupons. I sorted the coupons and filed them by date. I am going to give this a go for the next 8 weeks. I have a feeling there will be no turning back!

Believe... Prayer Works!

Monday, January 23, 2012

How to Play Their Way.... The IEP


Four years ago sending my daughter Makenzie to school was the last thing on my mind. After a choking accident caused a very serious global brain injury Makenzie was unable to walk, talk, smile, sit on her own, or even eat.  I spent hours day after day consoling, feeding, researching therapy treatments, doing therapy, traveling, and trying to manage her care, take care of my other children, and keep up a house all at the same time. As Makenzie slowly approached three years old, the idea of going to preschool became the talk of the town.  I had no idea what sending my little girl to school even looked like or when we would fit another activity into our daily routine. After some convincing by Makenzie’s Early Intervention team I decided to start the process of having Makenzie evaluated by Child Find. 



The reality of sending Makenzie to school was a very different reality then I had experienced with my other three children.  This was not going to be a simple process of filling out a package of standard contact information, buying a list of supplies, meeting the teacher at sign in day and then off they go on the first day of school with a few kisses and many tears of joy and sadness that your baby is growing up. Instead there where going to be evaluations, specialists, district employee’s, differing opinions, tears of anger and frustration,  laws, rights, talk of budgets,  red tape, and big words that no parent should ever have to learn the definitions for.


The first three years Makenzie was in school I advocated for her……. but failed miserably. I ended up pulling Makenzie out of school six weeks into Kindergarten and home schooled her for a year.  During that year I spent a lot of time educating myself on special education law and Makenzie’s right to a free and appropriate education.  I researched integration and least restrictive environment. I learned all of the definitions to the big words and was fluent in a whole new language.
During the summer we moved and I had a chance at a fresh start with a new team. Armed with more knowledge I was bound and determined to concur the IEP process. Makenzie was going to get the education she deserved. 



Today Makenzie is in a class with 23 of her peers. She has a one on one aide (who is amazing by the way) to assist her at all times. The classroom teacher does a wonderful job of making sure Makenzie is learning and integrated. The special education team is phenomenal in supporting Makenzie outside of the ILC classroom. For the most part communication with the staff has been great. Makenzie also has many friends, uses her walker, and for icing on the cake…..the district even purchased Makenzie a talker for her use at school.    

 

Over the last couple of years I have learned a lot about special education, the IEP, FAPE, IDEA, and how to make it all come together for my child. So without getting into a whole how-to lesson on IEP’s here are a few of the major things I found work the best in this process.

In my opinion the first and most important thing to remember is that even though getting your kiddo with special needs into school successfully can be frustrating it is imperative that you keep emotion out of the picture. This is a business deal.  It took me over 3 years to figure this one out and is very hard when you love you child, know what they need, and can’t figure out why there is red tape surrounding so many of the things your child deserves.  While we just want our children with special needs to have the same experiences as their peers many of them cannot tell us about their day nor can they independently perform many of the tasks their neuro typical peers can. They need immensely more than other children their age and their goals and education needs look so different then what we imagined. It is emotional. It is hard not to cry or become angry but it is so very important that you do not take those emotions with you to any meetings at the school.   
Take a deep breath and continue to remind yourself that this is business. 

 

Now that our emotions are under control learning the law is of up most importance. When I started to get serious about my daughters right to an education I had the IDEA statute printed out and bound. It became my new best friend. It is so much easier to “argue” with someone about red tape, procedure, funding, and other legal matters, when you know just how to stick it right back at em’.  For example I knew my daughter needed assistive technology (AT) in the form of a talker with eye gaze. I knew the school knew the same thing. Heck it was even in writing after their own evaluation but yet they kept trying to get out of putting it in her IEP because she did not have a device. There were some very intense IEP meetings surrounding this issue but I knew the law that was tucked so neatly into the IDEA about AT and what was legally required on the districts part. The end result…….. A district funded talker with eye gaze at school for Makenzie.

The third on my list of important things to remember is follow up. This is an art. In order to follow up well you need to learn how to write letters. Not just any kind of letter but one that is always positive and fact based. Remember we are keeping our emotions at bay. I follow up on everything. If I talk to a teacher in the hall, have a conversation with the principal on the phone, when I meet with the specialists, and of course follow up is essential after formal meetings. 


Even if I am fuming mad I always start with thanking the recipient for something. Next I state the facts i.e.: exactly what was discussed, or specific events. I then recount what I heard and understood and sometimes that is it…….just follow up. Other times there is the need to ask for another meeting in order to further discuss a solution to any issues which were not resolved or that need to be corrected in your child’s IEP. If so, just state kindly that you would like to hold another IEP meetings so that the team can more thoroughly address any issues that have come up. Keep your paper trail. It may come in very handy one day! 

 

Last but defiantly not least……. never lose sight of what this process is all about. You’re Child! This is not about professional ego or the need to win. Never let what drives you become about anything but what your child needs and deserves.  Remember what you are advocating for and don’t be afraid to ask for help.


There are many organizations out there that will help you navigate this process and most of them are completely free.  Check with your state or county organization for specific state resources. A couple of really great nationwide recourses are The ARC and Family Voices. Parent to Parent is a great parent board and Wright’s Law is a wonderful resource for questions on IDEA law.

Take another deep breath and go get your child the education they deserve!

Believe…. Prayer Works

Thursday, January 19, 2012

Second Chances

On March 25th 2007 when my daughter was 18 months old she died and then was given a breath of life and a second chance to live.

I spent the first five days after the accident shuffling back and forth from Makenzie's bed side to the waiting room outside the PICU to visit with the many people that came to comfort me. My daughter hung onto life in a room with tubes and wires. She lay lifeless in a deep coma induced by medication and brain damage. I cried more tears then one could probably ever count. I woke up morning after morning in a little blue recliner next to Makenzie's bed only to realize that none of what was going on was a dream but instead reality.

One of the most vivid memories I have from those first five days in the hospital is the visit I got from my Aunt Kathy. I remember feeling a rush of peace the second I walked through the door into the waiting room and landing in her arms. It would be the first encounter I would have with another mother who had felt the same loss I was feeling. She was a mother who had cried many tears at her child's bedside. She was mother who had watched one of her children get better and years later would watch 3 of her children become angles in heaven. She was a mother who offered understanding and God's love and grace even through the hardest times.

I remember holding onto her tightly and through my tears I asking the one question I dared not ask any one else.... "why would God do this to my little girl?"

She squeezed me a bit tighter and assured me that God did not do this to Makenzie but instead it was the sin in the world. She then went on to recount a part of Luke 11 which reads:

Luke 11:11-13
"Which of you fathers, if your son asks for a fish, will give him a snake instead? Or if he asks for an egg, will give him a scorpion. If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him?"

She reminded me that God would only give us good gifts and I felt like God had spoken in that moment through my beautiful Aunt the exact words and truth I needed to hear.

Then on April 23rd just one short week before Makenzie was released from the hospital I picked up the bible that laid on the counter. I ran my fingers across the pages and opened it. I laid my eyes on these words in Job.......

Job 5:8-9
"But if it were I, I would appeal to God; I would lay my cause before him. 
He performs wonders that cannot be fathomed, miracles that can not be counted."

I ran upstairs to a bedroom in which Makenzie's baptism gown happened to be hanging in the closet. I collapsed in tears while clinging to the white gown that my daughter wore the day I promised her to God. I knew in my heart that everything was going to be ok.

Over the years I have looked back at those first few weeks after Makenzie's accident in awe of God's power and plan. I did not know then what "ok" really meant but I knew the peace that it offered.

Four and a half years later my life is full. Makenzie is doing amazingly well. Four years ago I would not have envisioned a little girl who still could not sit, talk, or walk as "ok" but God knew better. Makenzie is more then "ok" she is GREAT!

However, I have noticed over the last 4 years that with each passing day it becomes easier and easier to take "GREAT" for granted. I find myself thanking God less and less for each new skill Makenzie acquires. I take more credit and give less to the God who is handing down all of the wonders that cannot be fathomed and the miracle's that can not be counted. I go days without even talking to Him or relying on His mighty hand for any part of my life.

I have come to a point with 4 kids where I have been smacked back into reality. There is only one of me and sometimes more needs in one day then I could organize in an entire month.

I have found myself in tears multiple times in the last few weeks because no matter what I do, I just can't seem to get it together. I am exhausted and overwhelmed. There are nights when I am supposed to be in 3 places at one time and at the end of most days I just sit trying to remember what the heck I even did that day.

Over the last couple of days I have felt great guilt for trying to do this alone. I have also felt incredibly guilty for not giving credit where credit has been due. I have felt God reminding me of how far we have come and who has orchestrated it all.

I am not alone. I may only be one person but God continues carry me when I can not walk anymore. He continues to provide in ways that make it possible for one person to meet the needs of four busy, growing kids.

So from that day in March when I sat with my Aunt not knowing if my daughter would live or die until today, watching Makenzie do things far from being in a lifeless coma, I am here to say that without God's gifts, wonders, and miracles,  we would not be  in this place of pure overwhelming, exhausting, busy but absolutely AMAZING BEAUTY that is Makenzie's Miracle.....A little girl with a second chance at life who continues to be a testament of God's healing power each and every day!

So tomorrow morning before I crawl out of bed I will remind myself of this simple fact......this is the day that the Lord has made............and with each busy moment I will try to remember that He is there to carry me when I can not walk any more.

Believe.... Works!

Wednesday, January 11, 2012

Protesting

I have so much to do but I am going to slow down for a few minutes and share what happened today.

I never stop being amazed by Makenzie.

This week she has turned a major corner with her talker. It is like a light bulb went on and she realized that the choices that she makes are her voice. She has been commenting, protesting, and requesting with great accuracy and amazing consistency all week.

Yesterday afternoon I was working on some pages for her talker on the computer. She was sitting in her chair about 2 feet away from me armed with her talker. She turned the TV on and changed the channel to Sprouts which kept her occupied for about ten minutes. She then to me "come here" so I walked over to her and she grinned from ear to ear. I explained that I was almost done and I went back to my computer. No sooner then I sat back down she was at it again. "come here" "stop, stop, stop!" So I got up again walked over to her and asked if she wanted mommy to be done on the computer. Again she smiled. I asked her for five more minutes, sat back down, and she started up again...... "come here, stop, stop, stop!" So I stopped.

Today it snowed and snowed and snowed. Makenzie had two hours of PT with the neuro suit and before noon she was wiped out. I fed her lunch and we trudged through the snow to school. I brought her inside, helped switch out her chair, and loaded the new pages into the schools talker. I gave her a kiss and told her to have a good day before leaving to go home.

About and hour later my phone rang. It was Makenzie's aide. Usually she has some amazing thing Makenzie did to share or needs to ask a question but not today. Today the first thing out of her mouth was.....

"Makenzie is having a really bad day. She made the pouty face all through music class, will not make eye contact with anyone and is refusing to smile. When I try to do activities with her on the talker she goes straight to her talk page and has told me over and over ",

"help please, I want to stop."

Her aide then went on to tell me she would love to have her stay but Makenzie seemed to really want to go home. So I headed back to the school to see what was going on.

The second I walked through the door Makenzie gave me a huge smile. The nurse had taken her temperature and said she had a low grade fever. She took it again while I was there and it was normal. We stayed for a bit to talk to the aide and the speech therapist about what may be going on. I explained to them that she had a really intense therapy session this morning and that she may be tired from that.

I took Makenzie home and watched her. She acted very normal. She kicked herself around in circles on the floor, babbled up a storm, and giggled. There was nothing "sick" about my princess.

Tonight I finally realized what had actually happened. I realized that my daughter was able to get her point across very clearly with her words and actions and then get what she wanted. This is both very good and very bad considering if she keeps doing this at school there will be a big problem.

I am over the moon tonight. I don't know what clicked in her all of the sudden but I will take it. I have spent a good amount of time wondering what she will do when she gets to school tomorrow and what I will do if she protests being there again. After much thought I still haven't come up with a good solution.

If it was my boys I would tell them to suck it up and go back to class but I am treading new waters with my little girl who after four years is once again finding her voice (and apparently her attitude as well). How do you look at that little face who is finally able to tell you what she wants and needs...... just suck it up and go back to class? I think I am going to have to dig deep! Oh and I am pretty sure we can mark learning how to protest off on her IEP as achieved, don't you?

Believe.... Prayer Works


Tuesday, January 10, 2012

Stem Cells and 60 Minutes

Well 60 Minutes has done it again.

Two years ago 60 Minutes did a segment on stem cell scams. Last week they did another.

Both of these segments have managed to make my blood boil for several different reasons. The first being that they really did find scams preying on people who just want to get better. Infuriating.

However what really makes me upset it the one sideded-ness (pretty sure that is not a word) contained in both of these segments with great effort taken to make a very clear statement that stem cells do not work for things like CP..... EVER...... not yet. They used big wig US medical doctors with million dollar labs to provide scare tactics and to dispute a man that clearly had no clue what he was doing and very obviously had no right or business treating anyone. 

What I want to know is why they can not explore the other side of the story outside of the very clear scams. Why can they not interview the overseas doctors they continue to discredit who also have million dollar labs (that I have seen with my own eyes) not just shacks. Who perform these procedures in REAL hospitals. Who ARE doing research and are not "self taught". Who have medical degrees that have not been suspended. Who do not guarantee healing nor offer promise of even the slightest cure.



Why oh why is 60 Minutes so scared of getting two comparable sides to this debate?

Many could speculate several different reasons for this program to provide such a lame comparison on the effectiveness of stem cell therapy such as ties to the  pharmaceutical companies (The segment was funded by a major drug manufacturer after all) , threats from the health department, fear or connection to the FDA (how many drugs were recalled this year?), blah, blah blah but none of that really matters because it is done...... very unfairly in my opinion.

You may be wondering why I care. Makenzie has already done stem cell therapy two times and it worked, so why do I care what 60 minutes has to say?

I care because I have watched Stem Cell Therapy help not only my daughter but several other children I know personally. I have watched Makenzie's friends gain eye sight, cognitive abilities, and physical skill. I have seen the healing and it makes me sad to know that there are parents that will write this therapy off for their child because a US TV show did a one sided  report.


Some people look at Makenzie today and do not see the value of stem cells. No, she did not get up and walk or talk. She is still fed by a g tube and she can not sit on her own but these are not things that I expected to happen from stem cell therapy.When we embarked on this journey I expected nothing but hoped for miracles.




....... and miracles Makenzie got.

Shortly after we got home the daily episodes of vomiting STOPPED. She no longer woke in the middle of the night or first thing in the morning to episodes of forceful yellow bile being expelled. The day time random puking also stopped. Two years later, after two full years of FTT, bi passing her stomach with a j tube and constant reflux and vomiting everything she ate, Makenzie is fed 3 bolus feeds per day, she has gained 10 pounds in one year, and is thriving. Funny thing is..... most people don't realize that the trigger to vomit comes from the brain...... hmmmmmmm?


Makenzie also gained much cognitive ability. Her receptive language improved. She started showing us that she knew her colors and numbers with tools such as the iPad and low tech books. Makenzie began following directions and crying when I left the room. Today Makenzie is communication with a talker. She is asking questions, requesting her needs, and commenting all on her own. She can complete pattern recognize her name, and navigate a power chair understanding when to stop and what direction to turn in order to get where she wants to go.


Then there is the physical improvement we saw immediately following Stem Cell Therapy. For the first time ever Makenzie was able to look up. She started tracking things up which she was unable to do before stem cells and was able to find and watch fireworks for the first time several months later. She improved her walking skills, her muscles are looser, she started using her arms and hands to activate toys a ton more and was able to physically push 3 different switches to drive a power chair.  Makenzie's immune system was also much improved. Makenzie gets sick a lot less and colds that would have sent her to the ER before are now just colds that I treat Makenzie for the same way I do my boys.


Some will say this is all in my head. Some will say Makenzie would have done all of these things anyways and that is ok but I know different. I know where my daughter was before and after treatment. I know all of her therapists saw the same changes I did. I know that God opened the doors to stem cell therapy. I know that he placed each new cell where it needed to go. I know that Makenzie would not be where she is today without Stem Cell Therapy. Is she completely healed? No..... but her life has a ton more quality! Was it worth the time and money......absolutely!




and since this is a two sided story I also want to be clear that I also know kids who did not benefit at all from Stem Cell Therapy.  Plain and simple.... nothing happened.




 

My advise on this subject if you are considering stem cell therapy is to do your research. Before I chose to head overseas with Makenzie I got the blessing from her Rehab Doctor. I spoke to doctors in person that had done stem cell trials on real people and called clinics all over the world armed with every question I could think of. I paid NOTHING up front.

Do not expect miracles instead hope for them and know that there are NO guarantees.  

This treatment is not for everyone.

I am not a doctor or a scientist. I am a mom who will walk to the ends of the earth to help her kid be all that she can be. Unlike 60 Minutes this blog post was not sponsored by anyone and is my own thoughts on the subject. It is my experience with my child...... Our Stem Cell Journey

Believe.... Prayer Works!











Sunday, January 8, 2012

Tears of Joy

Getting back into the swing of things this week has been hard. Going from no appointments, no therapy, Christmas, New Years, family, friends, flexible bed time and sleeping in, back to real life has been exhausting.

However even through the exhaustion this week's theme has been "Tears of Joy"

Makenzie is doing so well in so many different areas.



Thursday was the first time that Makenzie got to show off the power chair to her PT. Makenzie is using so much control while driving. On Thursday when Makenzie was asked to turn around and find mommy she turned, stopped, and came forward letting go of the switch to stop her chair right at my feet. I watched as the tears pooled in her therapist eyes. Makenzie was so proud.

We still have many adjustments to make on the power chair including getting the right head rest in and adjusting the switches a bit but none of these small issues don't seem to be slowing Makenzie down!!!

We are also starting to look into our options for a ramp into our home. When we brought the power chair home Mr 14 used two 2x4's and a piece of ply board. It took him nearly an hour to slowly scootch it inch by inch out of the garage, up the stairs, and through the door. I grit my teeth all the while thinking Makenzie's new chair was going to end up tipped over into the snow. That didn't happen thankfully but the power chair will not be leaving the house again until we have a safer way to get it in and out.

We do have a ramp in the back but the yard is covered with snow right now so that is not an option until the yard dries up.  I hope we will be able to get it all figured out and funded so so that we can take Makenzie out in her power chair soon!

I have not taken any video yet of Makenzie driving her new wheels but I will! I have been too busy chasing Makenzie around making sure that she doesn't crash. So far we do not have any holes in the walls but the 160 pound chair is tearing up the transitions in my floors. Oh well!!!

 

Then on Friday when I picked Makenzie up from school Makenzie's aide brought her out to the car with tears in her eyes. She was so excited to tell me about her day and how well she used her talker!

While at school Makenzie and her aide were reading the letter book of the week on her talker along with the rest of the class. The teacher paused the class to tell them that they could choose a center to go to when they were done reading. Makenzie navigated out of her book and to her talk page. She then proceeded to ask her aide...."what are my choices?" and requested help by selecting help- " help me please"


Her aide then helped her back to her book and Makenzie finished reading it. She then navigated back to her talk page. Went to adjectives. Then to sentence starters and chose " I want" and then proceeded to tell her aide she wanted something "soft" and "round."



Makenzie's aide asked her if she was describing play dough and Makenzie got a smile from ear to ear. They played with play dough for a while and then the aide navigated Makenzie back to her describing words and asked Makenzie to tell her about the play dough and again Makenzie chose soft and round.

If that is not intentional communication I am not sure what is! In one 10 minute setting Makenzie made a request, commented, and asked a question all by herself with incredible accuracy! I am so proud of my girl!

This event got tears of joy from me, the aide, the school speech therapist, and the home speech therapist to name a few!

 

I am so dang proud of my girl!!!

God is so very good.

If you are looking to see God's Miracles first hand you have come to the right place!

Believe.... Prayer Works!





Sunday, January 1, 2012

Reflection

This last year has been an amazing year. The last couple of weeks as 2011 has drawn to an end I have spent a lot of time reflecting on past 365 days.

This year has been a year of acceptance, love, intense blessings, health, healing, and letting go of things which can not be controlled.

Over the past year our family has come so far. We have been blessed with a new handicap accessible home and a modified van. Mr 10 was blessed with complete healing after a ruptured appendix, all of the boys have made great friends, and Makenzie was blessed with an Aspen seat, bath chair, a new talker with eye gaze, a Kid Walk walker, a Taos orthopedic walker, a new car seat, a power chair, a tummy that keeps food down, legs that learned how to walk, a team of therapists who love and believe in her, and a wonderful school just to name a few blessings in 2011.

Words can not really express how amazed I am over the love and support we have received over the last 12 months.  It has been a very busy year but one of the best I have had in a long time. Many big hurdles were removed from our path and have opened so many doors for my little girl!

I put together a video of pictures from this year. Even though the title says "Highlights from 2012" you can rest assured we have never traveled through time, rather I just got a bit ahead of myself last night and was too tired to fix it.


We ended the year with a bang.

The boys, Makenzie, myself, a neighborhood friend and a couple of mommies friends headed downtown for dinner and fire works.



We took the light rail and headed to The Hard Rock Cafe. There were thousands of people downtown and I am pretty sure everyone was hungry. I called the restaurant in advance and even though they were not take reservations I explained Makenzie's needs and the manager assured me that we would be put at the top of the list when we arrived and would not have to wait long to be seated. I was sceptical but hopeful that our evening would go as planned.



So now I will be plugging The Hard Rock Cafe as one of the most accessible restaurant's I have ever eaten at. We were seated at a table for eight within five minutes of walking through the door. As we were heading back to the table I over heard the greeter tell a couple that the wait for a party of three would be 90 minutes!



We had a very enjoyable dinner and Makenzie handled the noise very well. Our waitress introduced herself to us as Big Mama and the boys had such a hoot with her all night!
 

After dinner we walked around the mall for a few minutes before the fireworks started. There was a point were we had walked into a crowd of people and could not move! Can you say claustrophobia setting in REALLY fast!



Makenzie loved the fireworks! She looked up at them with the widest eyes and giggle every time there was a big bang!

 


The train on the way home was PACKED but we got right on and home about 10:30 pm.

 

Makenzie went right to bed and the boys and I toasted at midnight and then crashed into their beds!

Thank yo all for walking with us on this journey for another year! Your thoughts and prayers mean so much to me!!!!

Here's to another amazing year!

Cheers!

Believe.... Prayer Works!

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