Thursday, September 29, 2011

Words Don't Do This Day Justice

I started a post last night and erased it about 5 times. Yesterday was a roller coaster full of good and bad emotions. I was ready to give up and ready to wage war all at the same time. I couldn't find the words so I gave up and fell asleep in an emotionally exhausted heap on the couch.

Today however was extraordinary!

Makenzie had a great physical therapy session followed by an even better hour of Hippo therapy. Makenzie is so excited to go ride on the horse. They have also added a speech therapist to her time there and she is WONDERFUL! Makenzie has been pushing up through her arms while on her stomach amazingly well. She is sitting great on the horse and she has even maintained all fours while the horse is moving two weeks in a row!!!!!





 
Then we headed to school. Makenzie has now gone to school 3 days all by herself. I know that I have had issues in the past. I know we are still working on the talker issue but let me tell you how impressed I am with this school. A big part of the ease of this transition has to do with the aide the school assigned to Makenzie.  She is still learning but doing an AMAZING job. 

She has figured out how to get Makenzie in her walker is 6 minutes flat which if you know Makenzie or any kid that needs a walker for that matter you know how fast that is. 

She is wonderful when it comes to communicating and even sent me a picture of Makenzie in class with her friends and the hats they had ALL made! 

They have come up with a great back and forth book which has been filled out in detail every day and the notes in it tell me that Makenzie really is being allowed to be part of the class! There is more wonderful stuff  but the bottom line is that I am so dang relieved to finally have Makenzie in a place where she can learn and a place where her mommy feels like the people around her truly believe that Makenzie can do anything she sets her mind to! 

This evening we worked on decorating an apple to hang in the classroom. I offered Makenzie crayons, paint, and several other pretties like glitter, stickers, and stamps to spruce up her plain white apple. Makenzie chose red and green crayons and red paint. I put the crayons in her hand and the paint in a corner of the paper and she did the rest...... serious I mean she did it all.... every single mark on that paper.





SAMSUNG


There are no words that could explain how my heart feels. Makenzie's apple will go on the wall in her classroom. A project that she really did and is so proud of! This is going to be a good year and this is a reminder of why I don't give up but instead continue to wage war on behalf of my super smart and very deserving little princess!

Believe.... Prayer Works!



Tuesday, September 27, 2011

Did I Speak Too Soon?

I may have spoken too soon about the success over Makenzie's IEP.

I did not speak too soon about how wonderful her aide is..... she is abosolutly amazing and I am so happy that God put her in our paths! She believes in Makenzie and so excited to see her everyday! She has already gone above and beyond for my girl. Today she was so excited to tell me that Makenzie knew the letter "H". She tried to "trick her numerous times and no matter what she did Makenzie was able to identify "H" every time!!!! Go Makenzie!  I can tell her aide is so invested in teaching Makenzie because she believes she CAN learn! What a blessing!

I did not speak to soon about how well Makenzie's goals where written. We finally have an IEP the holds the school accountable to teach Makenzie specific things and most of these things are very similar to what all of the other kindergartners will be learning this year.

I did not speak to soon about how wonderful the staff is. The special ed teacher is very kind and receptive. She has also bent over backwards to help get Makenzie in school this year. The nurse is very proactive and on top of all of the things both of my kiddos have needed thus far. The principal is very present at the school. He is always available to talk and I have yet to see him without a smile. He is very patient and has made me feel very good about this transition. The teachers are also amazing. I have yet to walk by an employee who does not know my daughters name. We have been greeted in the halls with so many smiles and much interaction from all of the staff whether they work with Makenzie or not! This school is truly and amazing place!

However there is still one nagging issue. The talker.


Last week I was told that within four weeks Makenzie would have a talker to use at school. Today that story has changed. Now I am being told that Makenzie will go no longer then four weeks at a time without access to a talker. In other words they want to get loaners for Dynavox and when the loan period is over and they have to send it back they will have four weeks to get another loan.

Now this plan is ok with me as long as all of the other children's mouths are duct taped shut for the time Makenzie is without a talker. I mean a lite tech system should be ok right? It is only for the times when they can't use their voice and I am sure their parents will be fine with this plan too. I really think the whole class could get really good at charades during this four week period several times a year.

So this morning we sat with the speech therapist on the phone trying to work this out. We tried to come up with a plan. No can do. Everyone in the room played dumb. I quoted IDEA and they twisted it. I am not sure if the two district staff members who were there really had no clue but I doubt it.

Here is what the law says.

IDEA 2004

“The purposes of this title are to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.” (Section 1400(d)(1)(A))

 
§300.5 Assistive Technology device
                        Any item, piece of equipment, or product system, whether acquired
                        commercially off the shelf, modified, or customized, that is used to
                        increase, maintain, or improve functional capabilities of children with
                        disabilities. (Authority: 20 U.S.C. Chapter 33, Section 1401 (25))

§300.6 Assistive Technology service
                        Any service that directly assists an individual with a disability in the
                        selection, acquisition, or use of an assistive technology device. Such
                        terms include:
                        (A) the evaluation of needs including a functional evaluation, in the
child’s customary environment;
                        (B) purchasing, leasing or otherwise providing for the acquisition of
                        assistive technology devices;
                        (C) selecting, designing, fitting, customizing, adapting, applying,
                        maintaining, repairing, or replacing of assistive technology devices;
                        (D) coordinating with other therapies, interventions, or services with
                        assistive technology devices, such as those associated with existing
                        education and rehabilitation plans and programs;
                        (E) training or technical assistance for an individual with disabilities,
                        or where appropriate that child’s family; and
                        (F) training or technical assistance for professionals (including
                        individuals providing education and rehabilitation services), employers
                        or others(s) who provide services to employ, or are otherwise,
                        substantially involved in the major life functions of children with
disabilities.
                        [Authority 20 U.S.C., Chapter 33, Section 1401(26)]

I am sure that for most of you that is a lot of blah, blah, blah. However for me it is a standing point because I now hold in my hands the recommendations that came from the AT evaluations that we have done with Makenzie in order to determine her need for Assistive Technology at school. 


According to IDEA the school is now responsible for providing a talker for Makenzie to use at school. This one report is the bread and butter of our case should this head to due process. I really hope we can get this last issue resolved without lawyers and court costs. 

At the end of the day I would rather not know exactly where to find all of this blah, blah, blah. I wish I could say I haven't read all of the IDEA from beginning to end.

I just want Makenzie to learn and grow. I want to give her as many skills as possible to navigate this world with! I just want these people to provide what they are obligated to provide to help Makenzie reach her full potential. 

What is needed today from what I know about Makenzie as her mother and according to the district after careful evaluation is a " Dynamic display synthesized communication device with eye gaze access"

I really, really, really do not want to add Due Process to my resume. 

Believe.... Prayer Works!






Monday, September 26, 2011

This Little Boy

There is a little boy who has been in my life for a while now. He is not my child by blood but has captured my heart in a very similar way.

I was the first one allowed in the recovery room after he was born. I took all of the pictures just moments after his birth. He along with his family have lived we us during a transition in their lives.

As a newborn her has cuddled up next to me at night waking to bed fed. I have sat on the couch in the middle of the night staring at high big blue eyes as I watched him drift peacefully back to sleep.

He gave me his first smile and giggles while his mommy was away. I have taken him to the doctor. I helped throw his first birthday party.  His mommy refers to me as his "other mother"

I love this little boy named Morgan!



Today his mommy went back to work at a local school in the special needs department and really who better to care for him then his other mother!

Morgan has been so healing for me. He has help remind me of normal. I have been able to enjoy again many of the things I so took for granted with my boys and Makenzie for that matter. I have again been able to see the amazing miracle of first smiles and laughs. I have watched him learn to roll, sit, and crawl. He took his first steps in our home with his mommy and I looking on. I cried. He is starting to talk and is quite an honery little boy. I can see my big boys in everything he does. I know now the miracle of each and every little new thing he does. Did I mention this little being has helped heal my broken heart! God is so dang good!



So today Morgan tagged along with Makenzie and I.

He helped us teach the aide and the PT how to put Makenzie into her chair and walker. He also helped himself to a bite of the speech therapist's banana for good measure. He then looked up at her, smiled, and politely said.... "nana"

It has been a LONG LONG time since I have had a 16 month old around!

Makenzie showed the physical therapist how much she loves her new walker while playing a game with her speech therapist. We adjusted the table in the classroom to work for Makenzie's chair, and then Morgan and I left! and headed to the grocery store.

Leaving Makenzie was weird but it felt so right. I love her aide. She already loves Makenzie so much and I her belief that Makenzie can learn just radiates! I did not worry at all about her the whole time we were gone and when we returned I could hear her laughter echoing through the halls! I am so excited to see how much Makenzie is going to learn and grow this year!

Tomorrow we have the final instalment of Makenzie's IEP. Kaleb also has a doctors appointment. The problem is....... I can't remember what time the IEP meeting is scheduled for. I am sure it is supposed to happen at the same time as the doctor because I didn't look at my schedule when setting the meeting time nor did I remember to write it down. That is just how it goes around here.  One way or another both will get done because..... that is just how we roll!

Believe..... Prayer Works!




Sunday, September 25, 2011

Skate City

Today we had a full day. Church, lunch, shopping, more shopping, and roller skating.

The boys love to skate.

Today Makenzie got to "skate" with her brothers.


 and today Makenzie decided she loves to skate too!


The skating rink is loud... really loud.


Bu that did not seem to bother Makenzie to much!


The constant blinking of the strobe lights was very intriguing.


Makenzie made it around the rink two whole times before her little legs had enough skating!
Then she got to ride FAST in her wheelchair. Round and round she went!

I am going to pay for all of this fun in the morning but it was worth every second I spent on 8 wheels this afternoon!

Believe.... Prayer Works!


Saturday, September 24, 2011

Love

IEP Round Two

Well round number two of Makenzie's IEP is done. We will finish the IEP up with a third round early next week.

All in all it was a great meeting. I am pretty sure the best one we have had yet in the 287 or so meetings I have attended thus far regarding Makenzie's education.

I did really well keeping emotion out of the equation until the very end.



We started with a list of things that I wanted to address. Then we moved onto the agenda the school had printed out. I laughed when I read the time frames they had listed on the agenda an example being the 5 minutes they allotted to talk about Makenzie's OT goals. They allotted the same amount of time for PT, speech, and academic goals as well. Maybe one day they will learn that overshooting time frames would be more advantageous and realistic as we are about 4 hours into this IEP and heading in for another two ish hour meeting next week. I guess it was wishful thinking!

I think we have a great start on Makenzie's goals. We are going to be utilizing a talker this year and that opens up a whole new world in the realm of Academics. Our focus this year is going to be on learning how to use the talker to do a multitude of things on top of talking. It is so exciting to start thinking about all of the things Makenzie can use it for to show us that she understands and is learning what she is being taught.

The best part of this whole meeting was finding out that Makenzie will be receiving a talker to use at school. I do not care how they get it but the fact that they understand that it is their responsibly to acquire it and the plan in place at the moment is to have a loaner within two weeks and a permanent device before the loaner needs to be returned is nothing short of a miracle!



This year Makenzie also has a walker that she loves. When we started talking about Makenzie's PT goals we discussed  when and where Makenzie should be using her walker. I think my heart skipped a beat thinking about the day her aid tells me that Makenzie walked out to recess all by herself!

Of course we talked about classroom modifications, equipment, and training. Until Makenzie spends a bit more time in the classroom it will be hard to know what modifications will need to be made in the classroom but the one thing I know for sure is that she will have a place at a table that will be high enough to accommodate her chair. Small victories are oh so sweat! We will also have a training session with Makenzie's aid and the PT on Monday to make sure Makenzie is taken out of and put into her equipment correctly. On Weds. the school PT will be coming to the house during PT to collaborate further with our home PT on how to best accommodate Makenzie's needs.



The next time we meet we will be discussing Least Restrictive Environment, the transition plan, and Makenzie's schedule throughout the day. I am very nervous about these subjects because I know I do not agree with many of the thoughts the school has around these subjects. I am also sure the "it is not appropriate for a parent to be in the classroom" conversation will be had and that has been known to be the beginning, middle , end, and final straw talk in the past. I am hoping that they are smart enough not to bring that up. I have already told them that I will be leaving Makenzie at school on Monday. However along with that comes Makenzie's mommy checking in whenever her little heart feels necessary. There are no threats in this next statement however........ the moment I feel unwelcome at the school and unable to make sure my girl is safe will be the last moment Makenzie is at this school. By no means has the school made me feel unwelcome but I feel it coming. I have been in this place one to many times to miss the subtle comments that were thrown out today.

I wish the school could understand the love I have for my child. I wish they could understand the feeling you get not knowing if you baby was going to live or die. I wish they could understand that I won't hover for long if they just back off and understand that this is a process for both of us. Trust is earned and when it comes to Makenzie you REALLY have to earn it but it is possible.

I wish that they could understand how badly I just want to sit and take in everything Makenzie does. I could sit and watch all day. I don't get to watch very often. I am usually looking at the back of Makenzie's head struggling just to get her body to do what it needs to do.



I don't get to watch her play with her friends or go down the slide. I don't get to watch her color. I don't get to watch her do a lot of things. I am there but I never get to sit back and just enjoy her beautiful smile because I am behind her helping her hold the crayon, or she is on my lap going down the slide. Makenzie doesn't have play dates so friend interaction with kids her age is usually something I can only see while she is at school. However, my presence is not appropriate and quite honestly that makes me a bit bitter because I am the one who has loved my daughter through the last 4 years. I gave birth to her and the thought of not getting to hear my daughter ask a friend to play with her for the first time makes me cry..... literally.





So before you have any talks with me about visitor policy's or what is appropriate and what is not, I ask that you please choose your words very carefully!

Well, now that I have have written a post that is completely all over the place I am going to go to bed.

Believe. Prayer Works








Thursday, September 22, 2011

Spunk and Promise

There is a classroom out there. It is full of five and six year old boys and girls full of spunk and promise. They are just beginning their school journey and are full of a readiness to learn and great acceptance of others.

Every day they enter a classroom with walls covered by bright colored pictures. Numbers and letters are scattered about with artwork showing the creativity of children speckled in between. There are tables in rows with little chairs pushed underneath. The floor in front of the white board is covered with a multicolored rug where the children can sit and intently hang on every single word that comes out of their teacher’s mouth.

In this class full of children there is one that stands out. There is one child who needs a bit more than the rest. There is one child that has just as much spunk and promise as the rest but this child's promise tends to not be seen as easily. There is one child that cannot speak, walk, sit, or hold a pencil like the other children. There is one child who needs help to complete even the simplest of tasks. There is one child who needs a special chair that sits a bit higher than the other chairs that are neatly tucked under the tables.

All children except for one head to their seats after the teacher has finished explaining what she would like them to do. They pull out their chair and sit down with three of their other friends. They share markers, crayons, scissors, glue and pencils with each other. They do not speak but they are there together learning very important social lessons while they work.

The mother of that one child who does not have a seat reaches out to the teacher and asks if one table could be raised a bit so that her child's special chair can fit at the table and she can learn the same important social lessons as her peers. The teachers answer is one that requires some calls and a bit of investigation.

The following day when all of the children show up to the brightly colored room to learn once again, the table is still in the same place. The special chair is nowhere to be found and when asked again the teacher's answer leaves the mother of the child who needs a bit more than the others speechless.

What would you say if I told you the answer to the question about if the table could be raised to accommodate a very smart child with a lot of spunk and promise was..... if we raise the table the school would have to get larger chairs for the other three students to sit in. Our school is at full capacity and we just don't know if there are any extra chairs to use.

Yeah speechless.

If I was that mother I would not only be speechless but I would also feel like my one child who was very smart with a lot of spunk and promise, was not wanted or welcome in that brightly colored room with the tables in neat rows and little chairs tucked underneath. I would feel like I was being slapped in the face after investing so much blood, sweat, and tears to give my special child the best quality of life possible only to have three chairs get in the way of my child becoming part of her class. I would feel like throwing in the towel because if chairs are a problem then how do you overcome all of the other stuff.

Makenzie's IEP meeting is tomorrow afternoon.

Believe.... Prayer Works

Wednesday, September 21, 2011

Fast Lane

This has been a very nontraditional start to the school year!


Kaleb is back in school half days until next week. He had another follow up appointment with the surgeon and his WBC was normal! So providing he stays infection free he will be going back to school full days next week just in time for fall break! He is loving school other then the stack of homework the teacher sent home with him this week.


Makenzie has also been going to school. So far it has been going well. We have spent some time in the ILC room getting to know the teacher and the aid. Today we ventured into the regular classroom and Makenzie LOVED it! It was amazing to see how engaged she was and how much she took in. There has been discussion about how much time Makenzie will spend in the ILC room (special education) versus the regular classroom so I am hoping that Makenzie showed the staff how much more engaged she is when with her "neuro typical" peers then she in a "contained" classroom. Whether or not they believe it, I do know what is best for Makenzie and I hope today proved why I have been so adamant about her placement.

 

The Assistive Technology team has also decided that Makenzie needs a eye gaze device at school. We all knew this but evaluations where done as technicalities. We have an IEP scheduled for Friday so the details of how, what, and when will be discussed then. We have a Dynavox on order but it could be a while before it is approved so we need a plan "b" for school as so much of Makenzie's output relies on this technology.


Other then school it has been a CRAZY week so far.

We had another talker evaluation on Tuesday to revisit a different talker. Don't ask..... LOL. Makenzie did great and loved the company rep. I think she giggled for about two hours straight. I have uploaded a video of a couple clips of our time together.


We also finally got Makenzie's Kidwalk. I say finally only because it has been in for a while but because of this months events we were not able to have it delivered and fitted until now. We ordered the walker with an i2i headrest to help keep Makenzie's shoulders back. It works like a charm. We also ordered straps at the the thighs to keep Makenzie from crossing her legs! Those are miracle straps!


We took her new walker to school today and she had the best time! She walked up and down the sidewalk and mommy helped her walk in the grass with her new friends! She had quite the following and the questions about what was wrong with Makenzie came for the whole duration of recess. Kids are great! No holding back. One little girl kept telling everyone that Makenzie had broken her neck..... not sure where she got that from LOL......but no matter how many times I tried to tell her that Makenzie choked when she was a baby and hurt her brain, I could not convince her that Makenzie did not have a broken neck. Kids!


Last night we went to a fun center and the boys rode go carts for about 3 hours. They had the best time. Makenzie and I watched for a while and then we played some mad skeet ball until it was time to go home! We had a great time! Thank You so much to Starlight Foundation for providing our family with a wonderful night and so many great memories! If you have a child with special needs or a chronic medical condition you should check this foundation out! They are REALLY, REALLY AMAZING! If you do not have a medically needy child you should pray about donating to this foundation because..... they are REALLY, REALLY AMAZING!







Tomorrow is another super busy day! I usually don't especially look forward to the weekend but after this week I am ready to take a deep breath and slow down a bit.



Believe... Prayer Works!

Monday, September 19, 2011

Schedule

I have been having some behaviour issues with my older boys. At times I have found myself wanting to crawl under the bed and not ever come out or run away to an all inclusive beach resort. The thing is I find myself wondering if this stuff is normal pre teen - teenage behaviour or if it is because of everything my kids have been through in their short little lives. I guess there is really know way to know and all I can do is start from here and move forward.

Forward. That is also a hard one. Where do you move when you are exhausted, overly busy, and only one person. I am out numbered her four to one. Lately with all that Makenzie needs and all that Mr 10 has needed I feel like it is 100 to one.

I decided that I needed to look at my day and try to make some extra time each day to spend with them  before I tried to change my children's behaviour. For a very long time I have been winging it without any set agenda.

I am not usually a list person but last night I wrote down a list of all the things I needed to get done during the day and what time I was going to do each task. I suppose that is more formally known as a schedule right?

So today I followed my schedule to a tee until the boys came home from school. For the first time since we moved my son showed up at home with a whole group of boys. I was so happy to see friends walk through our door again that my well planned out schedule went straight out the window!. Homework?..... whats that? Chores?.....who needs 'em? Dinner at a set time?.....why?



I did however manage to get everything done and the kids in bed on time regardless.

Tonight I sat down and tried to write out a Tuesday schedule and realized it was futile as Mr 10 has a doctors appointment, Makenzie has an extra appointment with a talker rep, and we have plans to do some go cart racing in the the evening. Once again... schedule..... what the heck is that?

I am already beginning to realize why I don't have a schedule and I have be winging my life for so long!

Wish me luck and perseverance!

Believe... Prayer Works!

Sunday, September 18, 2011

Out of Focus

My life has been out of focus lately.

I dropped my camera a while back and was so excited when it finally returned from the shop. However most of the pictures I was taking were not focused. I tried outside in the sun, in the shade, at dawn, at dusk, and inside with a flash and without. Nothing but a whole bunch of noise and blur.

I find myself in the same place as my camera these days.

After I put my kids to bed a couple of nights ago I flipped on the TV. I laid on the couch and began to feel quite down. Here I was in the same lame place I was every night. Trying to enjoy a few minutes alone to relax after a full day of feeding pumps, IV medications,  lifting, carrying, appointments, cleaning, cooking, listening to my children argue, school issues,homework, appointments, more appointments, phone calls, more phone calls, baths, more tube feeds, more IV medicine, water infusions, more cleaning and well..... you get the point.



What is the point. Same stuff different day over and over and over again.

Honestly this is the first time I can ever recall feeling so depressed. Normally I am a cup half full but at the same time realistic type of person.

I am pretty sure having a very sick son on top of a very needy daughter for the last month had something to do with my mood. Until yesterday I had not seen any friends or been out of my house for anything other then Mr 10's hospitalization, doctors appointments, school appointments, or to buy food for a month. If it wasn't one thing it was another.


When Mr 10 finally turned the corner about a week ago I could feel the adrenaline seep out of me. I could feel my whole being just crumple into an exhausted heap. I finally let my emotions loose and allowed myself to grasp how close Mr 10 was to an outcome that would have once again changed my life forever. I came to understand again how faithful my God is and then I slowly fell apart.


Yesterday my friend came over with her kids for the first time in over a month. We talked, we laughed, we stuffed our faces full of chips, queso, and peanut butter bars. I chased Morgan around the yard with my camera relishing in all of the new things he was doing.  I watched Mr. 10 put on his Rollerblades and ride up and down the sidewalk with his friends. I found myself smiling a real smile again.


After everyone was in bed I popped my sd card into my camera to find once again a bunch of blur. I was so disappointed.

So today I took myself to the camera store. I bought a new lens and at dusk we all (minus Mr 13... he was busy being a teenager in his room.) went out to the park to play.


Focus, ah beautiful focus!

Same stuff.... different day...... but oh so beautiful! Life is good!

Believe.... Prayer Works!


Monday, September 12, 2011

Moving On

For the first time in over a month we had a very uneventful weekend.

It has been so wonderful to watch Mr 10 get better. He is back to his good ole self and even asked me thi evening when he could ride his bike again! Wonderful stuff!!

I got the go ahead to pull the feeding tube out today so that Mr 10 can go back to school tomorrow! He will start with half days this week and the hope is that he will be able to tolerate a full day by next week. This also means that I can start the transition back to school for Makenzie as well! I am so excited!

 

We went into the school today to drop off paperwork and  meet with the nurse to go over the health plan I prepared for Mr 10. The principal and nurse were very understanding of Mr 10's needs and I feel very comfortable sending him back to school! While we were the principal brought up the attendance issue. He was very kind and told me he understood but that at a certain point the district may go over his head with issues regarding how much school my two youngest children have missed. I just had to shake my head and laugh. I would love to know what the "district" would have done differently if they were in my shoes. It is not like I timed our stay at the Children's Hospital Resort and Spa with the start of the school year!  It always has to be something. However it is nothing a couple of doctors notes can't fix.

 

This evening we spent a bit of time outside before coming in to get ready for bed. I was right on track getting all of my kids in their beds by 8:30 pm until Mr 12 barreled up the stairs to tell me there was water all over the basement floor! The boys were kind enough to clean up most of the water while I put Makenzie to bed but we are all still at a loss as to where it is coming from. I guess the plumber will be making ANOTHER visit to this house of water! (side note.... I still love my house but I sure wish it would stop raining inside our walls!)


All of my kids are now in bed. Hopefully the basement isn't turning into a swimming pool. The Broncos are giving me a headache, and for the first time since the school year officially began every member of my family needs to be up bright and early tomorrow morning in order to head out the door for school! God is so good!

Believe.... Prayer Works!


Sunday, September 11, 2011

Remembering

Ten years is a long time. Ten years ago my babies were three, two, and less then a year old. Ten years ago Makenzie had not even graced this earth. Ten years ago I was a happily married stay at home mom who's life up until that point was fairly untouched by any tragic events in either the world or my personal existence.

Ten years ago I sat at my church waiting for Bible study to start. It was a time in my life before the kids started school and I had time to spend doing such things on a Tuesday morning. As our group of young mothers chatted about life the mood went from jovial to solemn.  I do not remember how or when the news penetrated our gathering but what I do know is that a TV was rolled into the room and we all sat staring at what was unfolding on the other side of this beautiful country.

We did not study that day instead we sat in disbelief as we watched the Twin Towers come crashing down. I remember leaving church that morning. I remember holding my children tight. I remember laying in bed that night listening to the silence trying to imagine what it was like to be there all while trying to push out those same terrifying thoughts as fast as they would enter my mind.

Ten years ago my boys were too young to understand what had just happened. Today they ask questions....lots of them. They want to see the footage. They listen intently to the stories of those that survived and the stories of those that didn't. Today I find myself searching for answers to give my children that are filed with love and not hate.

Today I  hear military jets fly over our home many more times then usual. I wonder what is going on in the sky as my brother and his family prepare fly home after a wonderful visit. Today I think about all of the lives lost and how their loss and that of their loved ones brought this country together on that day 10 years ago.

One thing that I do know is that we will never ever forget.

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Believe.... Prayer Works!


Better


Other then a long visit to the ER for a blood count and ultra sound on Thursday, this boy continues to heal and feel better at HOME!

Thank you so much for all of your thoughts and prayers!

Believe... Prayer Works!

Friday, September 9, 2011

Being Heard By a System That Doesn't Want To Listen

Given everything that has been going on lately I have been given health care a lot of thought. Not insurance or the politics behind the thought of moving to a socialized system but more about doctors and the institutions in which they work within.

When my oldest was born I had interviewed many doctors. I wanted the best for my kids. I really don't think at that point I had any clue what I was really looking for. I was concerned about the cleanliness of the office, the attitude of the staff, and what my first impression of what the doctors was. I asked questions about hours of operation, about how to get a hold of a doctor after hours, about immunizations, and many other now seemingly non important questions. When I chose my children's doctor I had no clue how important this one person/office was going to be in my life and that of my children.

For many years I took my healthy kids to the doctor for well baby check ups, shots, colds, ear infections, strep throat, and many other childhood illnesses. I have called them frantic in the middle of the night over fevers and croupy coughs. I brought my kids in for the ever famous justavirus many many times, and we have always agreed to disagree on subjects such as co sleeping and the like. From the very beginning my children's pediatrician has listened to me, respected the knowledge I have when it comes to my kids and I have respected his knowledge of medicine. I have trusted these doctors whole heatedly with my children's lives in the past and continue to trust them in the present.

On March 25th 2007 Makenzie's medical needs changed from very simple to very complex in the blink of an eye. She needed more specialists then I had fingers on both hands. She needed much more then a pediatrician could offer. I learned very quickly about the huge institution referred to as the hospital.

Over the past four years I have had a love-hate relationship with Makenzie's doctors at the hospital. Some listen, I mean really listen, and others just pretend. Some respect my knowledge and others just feel like their ego has been crushed. The patient Representative has become my best friend many times over the last 4 years. I have had over 4 years to gain knowledge about western medicine, 4 years to perfect advocating for my kids, 4 years to get frustrated with the cracks in the system and the core administration which runs the hospital where my children have come to frequent.

Today after some rest I couldn't stop thinking about the last 3 weeks. I thought about the ER visit which should have caught an appendicitis but didn't. I thought about the constant waiting on the next step. I thought about the conversations I have had with the nurses and surgeons. I thought about the numerous times every day when my son was put on the back burner and his cares were over looked. I thought about all of the times I felt helpless and unheard. I thought about how much I felt like no one cared what I had to say and the feeling of speaking to people who just refused to listen.

Then I thought about the infection that rages inside of my son. I thought about what would have happened if it weren't for all of the doctors who aided his healing. I thought about the feeling of safety that comes when you know help is right around the corner. I thought about where I would go should Mr 10 get sick again. They saved my child's life, actually now they have saved two of my children's lives. For that I am eternally greatful.

How does one take two very different feelings about one place and bring them to a happy medium. How do I get these doctors to respect me and the knowledge I have surrounding my kids so that I can trust and respect them. How do I keep my kid from falling through the cracks without having to be a sobbing, screaming mess before anyone listens and does what they are supposed to be doing in the first place. How do I let them know how very thankful I truely am for what they do when every single thing from changing the sheets and ordering my kid food while I am away to proper medication administration and overall medical treatment is such a battle?

I am very very thankful for each and every one of the doctors and nurses who poured out their knowledge to help my son. However, tonight I am searching for a happy medium. A compromise that involves parents who feel heard and respected by the doctors who have the means to help their kids.

Believe.... Prayer Works!

Tuesday, September 6, 2011

Oh How I Missed My Bed!

I am sitting on MY couch tonight. There are no beeping pumps, no loud phones, and most exciting.... no nurses waking us up multiple times every night! We will all get to sleep ALL night and there will be no surgeons at my door at 6 am! Oh how I love home!

Last night we looked at the CT scan images. The drain was able to resolve 3 of abscesses in Mr 10's gut. The fourth one is still there but is much smaller. All of the doctors were very happy with the results and with  Mr 10's healing.

This morning they pulled out the drain. Mr 10 was non to happy about the process but after a few tears it was done and we were ready to go HOME!!!!

I am so happy to be home! Mr 10 is happy to be home. Makenzie is happy to be home and my big boys were so surprised to see all of us hanging out in the family room when they got home from school this afternoon.

It was a quiet afternoon. My mom came over and made dinner, the boys hung out together, we played a few games of cards, and by 8:30pm all of the kids were tucked into their beds. Well kind of........

As we were getting ready for bed Mr 10 began to get mopey. When I asked him what was wrong he told me with tears in his eyes that he wasn't used to sleeping alone and that he didn't want to sleep in his room.

Being the softy that I am, there is now an extra little man sleeping in my bedroom on his mattress on the floor. Man do I ever love that kid!!!

As much as I love being at home and as many issues that I have had with the hospital staff over the last 3 weeks there is still something comforting about being at the hospital with your sick child. Tonight I am so in love with being home but there is part of me that is scared. Mr 10 was so sick. We came home once before and that did not end well. Tonight I am asking for continued prayers for healing. Please pray that the drain did its trick and that Mr 10 will only continue to get better from here on out. Pray that his body will kick this infection once and for all!

I think it is now time to go sleep in my OWN BED for the first time in almost 3 weeks! Goodnight!

Believe... Prayer Works!

Sunday, September 4, 2011

StillCalling the Hospital Home

I am so sorry for the lack of updates. However, I am a bit busy trying to take care of 2 kids at the hospital. Second off I was taught that when you don't have anything nice to say you just don't say anything at all. Well I have not have many nice things to say.

The one nice thing I do have to say is that Kaleb is feeling much better. However today he started having some stomach pain again. I am hoping it is just an issue with going to the bathroom but my mommy gut tells me that is not the problem.

It has been a long 24 hours. I feel like if I have to wait on one more person to tend to my sons needs I may crawl under the bed and not come out. I am finding more and more that the only way to get anything done around here is to loose your mind,  throw an adult temper tantrum, and then call the patient advocate. This sparks many professions interest and send them to your room to find out what needs to be done. Things get done and then the whole process starts over again the next day. Fun stuff and I am now on day 12 of this process.

To top it all of Makenzie was seen in the clinic yesterday to get her AMT mini one non balloon button taken out and a balloon button put back in. However in my life nothing is ever that simple. So in "my life" fashion Makenzie's feeding tube would not come out. Better yet, in the process of trying to get it out the button broke.  At this point Makenzie still had a button but nothing could be put through it.

To make a very long story short, Makenzie ended up in the OR at 7pm. Let me tell you how cranky and utterly rude surgeons are at 7pm. SO cranky and SO rude that when you want to ask a simple question about the options of the procedure you are told by the said surgeon " I will do this whatever way you want me to even if it is the wrong way. We can not keep holding this OR up!" The funny thing is Makenzie and I waited for over an hour f=in the PACU for an OR to open up. In that hour not one person came by but somehow I was holding everything up..... whatever.

Needless to say Makenzie was given anaesthesia. They pulled the feeding button out. She woke up beautifully and we headed back up to Mr 10's room at about 10:30pm.

I am done! I am done being woke up but rude nurses in the middle of the night. I am done having to remind nurses of how to do their job. I am done waiting on surgeons. I am done running circles around the abscesses in my sons gut. I am done being at the hospital.  DONE!!!

For what it is worth even after all of the problems we have had, I am still super grateful for this hospital which has saved my son and daughters lives. Please pray that my son's infection clears up. Please pray for healing and strength.

I am now going to bed!

Believe.... Prayer Works!

Thursday, September 1, 2011

We're Back..........

A long over due post. That is what this is.

Mr 10 is back in the hospital and has been since Tuesday. After Mr 10's CBC came back high again we headed in for another CT scan to see what was going on in his little stomach. What was found was not one, not two, not, three, but four abscesses.

They took Mr 10 in to surgery to place another drain first thing on Wednesday morning. Overall it went much better. He has not spiked any fevers and clinically looks much better. He has lost a lot of weight. Enough weight to buy him an NG tube.

He has been eating better today but not enough to get back to where he needs to be. He is walking MUCH better and even went to the play room this evening for about an hour.

As of tonight the drain has stopped draining. It is leaking at the site and that is being "watched". I was told today that they will be doing another CT scan tomorrow to look at what is going on and where we go from here. Please pray that the scan shows that the abscesses are gone. Pray for healing!

Makenzie has been such a trooper through all of this as have Mr 12 and Mr 13. It has been a long 3 weeks. Makenzie continues to smile and giggle the day away, She is sleeping well despite all of the noise of the hospital, and we have run into so many people who took care of Makenzie over four years ago right after her accident. They have all been amazed with her growth and healing!

Again please pray for healing a rehabilitation! Please pray that the word HOME is in our future soon!

Tomorrow is a new day. 

Believe.... Prayer Works!

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