Sunday, July 29, 2012

Knocked Down But Not Knocked Out

I grew up in suburbia. I went to a private school. I had two brothers, my own room, and a mom and dad who loved each other and to this very day still do. Yes we had family dynamics that were far from perfect but as an adult looking back on my childhood I don't think the proverbial picket fence could have been any whiter.

I left the comforts or the not comforts of my private school after middle school and finished my freshman year at the local public school with a 4.2 GPA. However, that summer my life began to change course. I got a job and more or less just stopped going to school. I tried a few alternative high schools and ended up getting my GED after meeting a boy, getting pregnant, and officially moving out of my parents house at 17.

As a child when asked what I wanted to be when I grew up I always responded with, " I want to be a mom." So at 18 years old when I held my first baby boy I was in Heaven. I was living my dream! A few months after my firstborns birth his father and I got married and all that was left was to live happily ever after.

 

We lived happily for a while having two more children. My teenage love went to school and landed a good job with potential for advancement and one day a solid career. I did day care and taught Karate at a school near our home. We owned our own house in suburbia, and our very own picket fence looked pretty dang white until the day my teenage love picked up his bags and left our family after having an affair with my best friend.

I was knocked down but not knocked out.

I would soon remarry and not long after that have my fourth baby..... Makenzie.  We struggled to find our way as a blended family but we were happy....... and then tragedy struck.

Once again I found myself knocked onto my knees. This time however it was not going to be so easy to get back up.


Shortly after Makenzie's accident my second marriage began to fail and on top of everything my little family was going through I began to plan what I would do if I found myself in the role of single mother to 4 kids, one of which had many needs.

I completed a three week CNA course, got a job with a home health care company caring for Makenzie, and shortly after I got my first paycheck my 2nd marriage ended. So three years ago I joined the single mommy club to go along with my membership to the special needs club I had joined just two years earlier.

I found myself flat on my back but still breathing.

 

Life moved on. My family and community stepped in to help provide modifications on a new house, an adapted van, costs for many of Makenzie's therapies and other help in all forms. Slowly but surely over the those 3 years I  began to dig my heels back into the ground and stand up straight again. I am happier today then I think I have ever been.

Over the last two years Makenzie has done so well and my boys are growing up fast. I have done a lot of soul searching. Part of that process for me has been reflecting on the question which has been asked my whole life...... "What do you want to be when you grow up?"

I have thrown a lot of things around. I have called many schools and set up meetings. I have looked into shorter certificate programs. A year ago I filled out and submitted FASFA paperwork to 3 different schools. I studied for placement tests and then did nothing. At the end of last school year I signed up for a professional photography class at a technical school and got excited. I finally was going to do something.

Over the summer and after some more soul searching I decided that while I love taking pictures and hope to continue to learn and improve my skills in that area, photography was not what I wanted to do as a career. So I did some more searching and kept ending back at the one thing I was the most excited about and scared of at the same time.......becoming a nurse. 

A degree in nursing is not for the faint of heart. It is a process that still to this day I am not sure how I am going to survive as a single parent. It is scary and exciting.

In the past few weeks I have jumped through many hoops at the college. On Thursday my plans where to take Makenzie to a appointment to get xrays done of her hips and then to the college to take their placement test. During that appointment I found out that Makenzie's right hip is in trouble. The first thought was...... Makenzie would never tolorate surgery or a full body cast. The next thing that crossed my mind was...... how in the heck was I going to go to school if Makenzie needed this huge surgery and months of intense recovery and rehab. After processing the news for a couple of minutes I had two things to say to the surgeon. The first was "Makenzie is not in any pain and my God is bigger then this, so for now I am opting to do nothing" The second thing I said was " I AM going to school and this time there is nothing that is going knock me off of the path God has put me on. "

I left the surgeons office and went to get something to eat. While I was there I met a man who spoke kind words to Makenzie and then proceeded to tell me he had lost his child in March to SIDS. I cried. I sat down with Makenzie and prayed healing over her while I ate and then headed out the door. As I was leaving the same gentleman stood up and handed me his business card and a little finger ring he had brought back from the Holy Land. He told me that he would be praying for us and smiled. I cried some more.

I picked up my son so he could sit with Makenzie and headed to the college. I was bound and determined to trust in God's plan for my life. I was going to stand tall and strong in peace and trust.  I was not going to fall down again. I was not going to give up on my dreams. I am too strong and determined for that.

 

The placement test took me just over an hour and a half. I placed very high in English and exactly where I thought I would in Math after 15 years. I walked out of that room with a smile on my face. I left with a confidence in myself that I have been trying to find for a long time.

Life has tried to get the best of me but it will not win.

I have officially registered for my first 3 classes. I have resolved to start and not worry about the logistics of nursing school just yet. God has taken me this far and I know he will take me the rest of the way.

In four years I WILL have a Bachelors of Science in Nursing.  Hows that for positive self talk!?

As for Makenzie's hip..... the x ray was not the best picture so I am hopeful that it is not quite as bad as it looked. Our PT is amazing and agrees that with or without school, now is not the time to consider surgery because Makenzie is not in pain. Makenzie is getting phenol in Tuesday which should help a bit and her stander and braces will be getting a much better work out both at home and school. We will re evaluate in 6 months with new x rays. Please pray for a miracle!

Believe... Prayer Works!









Monday, July 23, 2012

Home Sweet Home

We are less one appendix around here! I am so happy!

We came home yesterday which was a record setting hospital stay of less then 24 hours!!!

Mr 11 is doing well. He has had a low grade fever that broke this afternoon and has not needed pain medicine since this morning. He is still a bit sore but that is to be expected!

I woke up on Friday morning to 4 missed calls from my best friend in AZ. I was worried so I called her back and she asked me if I was ok. Yes, I am fine..... are you ok. I had no clue what was going on until she told me about the shooting. She just wanted to make sure that I was at home. I assured her that I was and I proceeded to my TV for about 10 minutes before my kids started to rise and the TV went off.

As I drove to the hospital a few hours later I had tears in my eyes as my mind was trying to process what had happened in a movie theater which I have taken my kids to many times. I tried so hard to instead focus on my son who had no clue what had happened just a few hours earlier. I tried to keep the tears at bay so that he would not think I was crying out of fear for him and also so I would not have to explain why I was upset. He did not catch on and I was able to hold off telling him about what had happened until after we got home yesterday.

It has been a long few days. Pray for Aurora and please pray for Mr. 11's continued recovery!

While we were  at the hospital I was able to see a couple of wonderful women who I met the last time we were in the hospital. Both of their children are fighting cancer. One had been home and was back for another round of chemo and another had not yet left. These woman are some of the strongest women I have ever met!

As we talked it was brought to my attention that we were DONE with this era of our lives. The appendix was gone and there would not be any reason to need more hospital stays or complications in Mr 11's gut. Until this was said out loud the thought had not yet crossed my mind.... WE ARE DONE!!!!

This got me thinking about not only this journey but also Makenzie's journey. Makenzie's journey started at the very same hospital where Mr 11's gut was finally fixed. In 5 years this hospital has changed a lot. They have remodeled and set up a completely separate pediatric hospital since Makenzie was a resident of their PICU.

We left the PICU after a week to go to Children's Hospital for their rehab program and have continued all of Makenzie care there never to look back until now.

I have been very unhappy with the care my children have received at Children's for a very long time. I can honestly say that every single thing that has helped Makenzie was brought to the table by me. I suggested the GJ tube. I asked for the up in reflux meds. I came up with her blended diet recipe. I have come up with her treatment plan for as long as I can remember and have really only used their perscription pads to get what Makenzie needed.

I also can not tell you of one time I have taken my kids to their emergency room when they have correctly diagnosed my kids. I have "complained" more times then I can count and only one time did I see any change. The one time someone listened to me it was over a maintenance issue in the parking lot and even that took two "complaints".

I can not continue to advocate for my kids in a hospital that could care less and only wants to hear from people who want to praise their institution.  Not once have I been invited to sit on a parent board or been asked to express my concerns to any department even though I have requested to be heard. I would love to speak to their med students about what I have experienced and explain to them from a parents perspective how I think they could better care for our children  but..........they don't want to hear it. 

I have been contemplating this for a long time however even though I was unhappy it was what I knew and I felt safe there in a weird kind of way. I at least knew how their system worked and where everything was. It was familiar and changing was scary. However, we have now been to the other hospital 3 times now. I understand their system. It is not a teaching hospital. Each time we went I saw the same nurses and they remembered us. Everyone was so kind and willing to listen. I have been nothing but happy there and most importantly my kid got the care he deserved EVERY SINGLE TIME!

So with that said, over the last couple of weeks I have set up appointments for Makenzie to go see new doctors. I have changed my hospital of choice on all of her forms and have peace about all of it. We will go see a new ENT, GI doc, orthopedic surgeon, and rehab doctor. I have also set up a repeat swallow study considering Makenzie is still doing a fabulous job of eating! It feels so good to know that in one short month I will have no reason to EVER walk back into a hospital which could not even make a simple apology for their gross negligence when it came to Mr. 11s misdiagnosis and at this point has done my children more harm then good! I wish I would have done this a long time ago!

Believe.... Prayer Works!





Thursday, July 19, 2012

Surgery

My little prince is having surgery tomorrow to finally remove his appendix.



I am tired. I am stressed. I have more to do today then there are hours in the day. I know he needs to have this done but I don't wanna take his smiley, feeling just fine little self to the hospital knowing that he will be in pain.

Mr 11 is weening off of the blood thinners in preparation for this surgery. The surgeon says that this is no big deal and I am trying to believe that. I am trying so hard to push back my worry and fully trust in God's mighty protection and healing hands.



If you could keep Mr 11 in your thoughts and  prayers over the next few days I would be forever grateful!

Believe... Prayer Works

Tuesday, July 17, 2012

Chopped

Well it has been three weeks or so since Makenzie started eating again and guess what?....... She is still eating! In fact the other day while she was eating lunch her loose tooth fell out and she ate that too!




I have been trying new things with her and she defiantly likes some things and hates others. One of these days I am going to get a yucky face picture because it is the cutest thing right before she spits the food out. At this point I would say her favorite food so far is a beef enchilada with red sauce or green chili, tomatoes, lettuce, sour cream, and avocados. She is also quite found of ravioli's, spaghetti, and mashed potatoes mixed with meat, veggies, gravy, butter, and a splash of heavy cream for good measure. 

I have found the soft diet preparers best friend at IKEA. This beauty will chop ANYTHING!




The thing I like the most about chopping her food with this as opposed to a blender of some sort is that I do not have to add any extra liquid to get it chopped allowing Makenzie to eat food that does not taste watered down.

I made her spaghetti and broccoli with butter and cheese a few days ago and took some pictures of what that looked like.

Over cooked noodles



Chicken fried in olive oil



Everything chopped up including the broccoli.
 

Lunch all ready for Makenzie to eat. 



She is eating two meals a day consistently and sometimes a snack or two as well. This typically means that she is getting a good 16-24oz by mouth a day.

She was able to eat all of her calories by mouth for two days straight but by the third day she seemed to lose a bit of steam and was much less interested so I backed off a bit to give her time to build more stamina and adjust a bit longer.

I am so very proud of my girl!!! 

Believe... Prayer Works!

Monday, July 16, 2012

Birthday Love

Makenzie turned 7 last week. I am so thankful and honored to have her as my little girl!

 

We celebrated once with my family and once on her birthday with friends. 



It was nothing overly grand but it was so very special!

 

We hung out on the deck and talked. We caught up with our very special OT who we miss dearly! We laughed and just enjoyed a beautiful evening together.



We opened a couple of gifts and all giggled when inside of one of Makenzie's gifts we found a pack of Pop Rocks.  Makenzie and Stephanie tried some together and we all howled with laughter at their faces when the candy started to pop in their mouths. I wish I had taken a picture of their reactions but I didn't so you will just have to imagine!

Makenzie also got Pixy Sticks that she so kindly shared with Morgan and her brothers! 



We sang Happy Birthday and helped Makenzie blow out her growing number of candles and then we cut the cake.

For the first time since Makenzie's first birthday she ate cake again!!! I have given Makenzie cake before watered down into a mush with milk but this time one small bite after another went into her mouth straight from the plate..... frosting and all!!!!!

 

and of course when you have so many therapists who love you there is always a new feeding technique to try even if it is your birthday.



And there may not be tummy time or grasp and release at your celebration but there is also always time for a little mouth stretch just for good measure!



HAPPY 7th  BIRTHDAY MAKENZIE!!!!

Thank you for loving my girl!!! Thank you for celebrating her life with us not only on her birthday but everyday. She is my little miracle and I am so thankful for each and every year I get to celebrate that with her!

Believe.... Prayer Works!


Tuesday, July 10, 2012

"Eating"

When I searched the word "eating on my blog this evening it came up with 8 pages of posts that had this one word in them. I felt the need to look because this is a subject I have addressed here many times..... first with much emotion and then disappointment.

Makenzie has been "eating" since very shortly after her accident. In the beginning it was one or two small bites of food. Slowly we moved up to enough to measure by one or maybe two ounces. There has even been a couple of times Makenzie has eaten enough by mouth to go without formula in her tube for up to a month. Each and every time I have gotten so excited thinking that one day Makenzie may not need her g-tube anymore.

 
(getting a picture of all of them is so much fun...... between my teenager who wanted nothing to do with this activity, Makenzie not wanting to sit still, and trying to get them all to look at the camera.........oh boy!)

Then the other shoe drops and one day Makenzie decides that she is no longer interested in eating. She will always take a few bites but then she closes her mouth, turns her head, and refuses to let any more spoonfuls enter her mouth. Every time this happens this mama gets a major case of disappointment before conceding to Makenzie refusal by stopping all feeding and concentrating on other things.

Over the last 5 years of ups and downs when it comes to this subject I have become ok with Makenzie's feeding tube. In fact I have grown to love it. I feed her super healthy stuff and I know she is getting enough. Honestly I had all but resolved to the fact that Makenzie would always love to taste food but eating for nourishment just wasn't in the cards for her. That is until the day she expressed hunger and then another day when she was hungry and proceeded to top off two bowls full of the most textured food she has ever been offered with ease.



For about a week I kept my emotions and excitement at bay however today I can feel it boiling over again. I have tried really hard to suppress any excitement because of our track record but it is getting harder and harder to do. Why you ask?

Well because Makenzie is eating enough most every day to cut out two tube feedings. She is up to about 7 oz of food consistently and eating more every day.

Today she ate about 6 oz of mac and cheese and avocados for lunch and then 2 hours later she ate a whole 4 oz cup of pudding crying when it was gone. For dinner Makenzie also ate about 8 oz of food. I also introduced her to a sippy cup with water because I am sure she gets thirsty while eating. Thin liquids have always been hard for Makenzie however today she giggled and laughed every time I gave her the cup and managed a good amount of water at both meals with only one good clearing cough the whole time!


(this is a good as it got! My son's scowl is just so handsome huh?)

I am so proud of my girl!

My excitement over this eating development is there but for some reason this time I feel so much more laid back. I am ok with her g tube. I am in no hurry to take it out. I am just so glad that Makenzie is enjoying food. I am having so much fun ordering her a meal when we go out to eat. I love that she can eat Swedish Meatballs at IKEA, Ravioli's at Olive Garden, and Beef Enchilada's at On the Border! I love eating with her. I love that she can eat with our family! I am having fun with it......for however long it lasts!!!!

Believe.... Prayer Works!!!!

Sunday, July 1, 2012

Eating Out!

Guess who got her very own meal while we were out to lunch this afternoon!

This girl did!!!!



For the first time in over 5 years our family went out to eat and I got to order a meal for Makenzie. We went to a really great Mexican restaurant and I ordered a beef enchilada with a side of avocado just for her.

I brought along my handy dandy food chopper from IKEA and got the food to just the right texture.  Guess what?........ Makenzie ate two thirds of the enchilada and the entire avocado!!!!! We topped off our lunch with a bit of ice cream as well!!!!

I am so proud of my girl!!!!

Believe.... Prayer Works!!!!!

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