After Makenzie's pump alarmed 3 times tonight in 15 mins and then gave me an error message and would not run, I took the whole pump downstairs to
throw it into the trash can figure out what was going on. This issue has been haunting me for the last several weeks and I am at a loss for what to do.
The sensors on the feeding pump are a bit sensitive and I have noticed the longer water sits in the bag the more air bubbles form and then the pump won't run. I a gave in to google tonight and searched "how do i take bubbles out of water?"
I got some pretty funny answers to this question but none of which really helped. I did however get a chemistry lesson on why the air bubbles are there but absolutely no good way to get rid of them. I gave up and refilled the bag with Pedialite in hopes that it will run tonight and Makenzie will get enough fluid. I have now resported to crossing my fingers because nothing else has worked! Ahhhhhhh!
Other then my unwanted lesson on why air gets trapped in water today was a great day. Makenzie had 3 hours of therapy and did great! Her OT had her laughing so hard I was afraid she was going to puke and her PT worked her out so hard.
Makenzie;s speech therapist and I sat down today and figured out that if Makenzie cooperates when we go to capture her shape for her new wheelchair seat next week we should have a finished product in 17 days!!!! I am so excited!
I am also excited to get to bed! I am tired! I have tons of pictures of our tree trimming and an awesome video of Makenzie laughing super hard today but I am to tired to get them all uploaded! Sorry! I will try to get them up in the morning if my day allows for some computer time! We shall see!
Believe... Prayer Works!!!
Tuesday, November 30, 2010
After Makenzie's pump alarmed 3 times tonight in 15 mins and then gave me an error message and would not run, I took the whole pump downstairs to
Sunday, November 28, 2010
Thanksgiving break has come to an end and we went out with a bang!
This morning was spent feeding, diapering, bathing, formula making, cleaning, diapering, clothing, and playing. By the end of the ordeal we were ready for the day and the house was ready for our Christmas tree!
The boys got home early afternoon and we headed out to lunch and to Sam's Club. By we I mean WE.... Erica and I plus 7. I still think when we are together we have John and Kate... Or just Kate.... plus 8..... way beat. Seven kids, 1 teenager who thinks we are embarrassing, 3 pre teens who still haven't figured out how to act in public, 2 princesses who have special needs and can not walk, and an infant. Yikes!
After lunch we left the waiter a nice size tip because believe you me he earned it. We then headed to Sam's to stock the cupboard to feed this huge brood for the next several weeks. Let's just say there where several times Erica and I walked away shaking our heads, denying that we knew any of them.
All joking aside they were really good kids and we got in and out pretty quickly. We made it home, put everything away, and brought up the tree and ornaments from the basement.
I have always kept Christmas decorating simple around here. Most all of my Christmas stuff can be found in 2 boxes and put up from start to finish in two hours or less. I have been called a Christmas scrooge but it works and keeps decorating fun for me instead being a major chore.
Boy did we have fun! Candy Canes, holiday music, hot chocolate,lights, and garland! Watching Morgans excitement and wonder as he watched in awe as we put the tree up. Makenzie giggled and kicked her little legs a mile a minute when we lit up the tree! She helped fluff the branches, licked a candy cane and even put a few ornaments on the tree!
It is late and I am tired so I will leave you with a sneak peek of the fun we had tonight!
What a great day.
I love traditions even if they aren't extravagant!
Believe... Prayer Works!
Saturday, November 27, 2010
High school state semifinals happened today! Normally I don't pay much attention to high school ball because none of my kids are in high school. Today however was a very special game. One of our good friends is a coach for the RJ Raiders and this year they made it to the state semi championship game! Makenzie and I went and had a GREAT time!
Makenzie was very sensory overloaded once the game started and cried every time the crowd would erupt. I started covering her ears and all was well. The second half of the game was much better and Makenzie did not seem to mind the screaming as much!
It was a GREAT game and our team won! Next week it will be off to the big, huge, pro stadium for the state championship game! The Raiders have yet to loose this year and have a perfect 14-0 record!
I was so proud of Makenzie for doing so very well! I was a bit nervous about how it was going to go but everything worked out and we had a wonderful time! I love football!
When we got home we were greeted by.........
I am so excited to spend some time with my friend and her kids! It has been too long!
Time to go mix up the Margaritas and catch up!
Believe... Prayer Works!
Friday, November 26, 2010
Yesterday, before dinner there was a lot of laughter and conversation. This year however we were missing my brothers wife and my little brother who is teaching in Korea.
In the next few weeks our family will grow by 2 but until then mommy is on strict bed rest! I am so excited to meet my niece and nephew. The stress of preterm labor is slowly fading each day as the babies get bigger and stronger! Every day they have not been born is quite a gift!
Ok, back to my point....I got to talking to my sister in law's mom. We talked about how great it was for my sister in law to have some help while my brother was busy at work (considering she can't get out of bed!) and I told her about my decision to finally hire someone to help me around the house. As a single mother, she was so very understanding and totally got why I could not do it alone anymore! I told her that I needed to work on being more productive while our nanny was here but at the moment it felt so good to just rest.
Her comment that followed made my day! She looked up and said something like .... it will come. Right now you NEED to take time and recover from the last 3 years. Give it some time!...... She hit the nail right on the head! It was just what I needed to hear. It is the simple understanding words of this kind of support and encouragement that pick this tired mommy up so she can keep going! Thank you!
When I hired our nanny I was at a breaking point. I felt like any moment everything was going to come crashing down. The sky was most defiantly falling Chicken Little!
I do need some time to recover and rest.... not just the weekend...
This has been a process and slowly I begin to surface. Slowly, I am beginning to feel human again. Slowly, I am beginning to enjoy life in a way that I have so been missing. I am not all the way there yet but I can feel some of the weight lifting.... slowly! God is so good!
Today I partook in Black Friday. It was so cold and the lines were so long but I did manage to get some great deals..... never mind the cold and the lines... I don't have the patients for that..... I got my deals in my pj's with the left click of my mouse. I was so warm, my kids we tucked snugly in there beds and I sat at my computer drinking coffee, listening to music, buying all the bargains my little heart desired! I think I am starting to really embrace this black Friday thing! How about you?
I also managed to clean out a couple closets this afternoon. Let me tell you how many interesting things you find when you do such a thing.... WOW! When I was done... ok I am not all the way done yet but Makenzie was done with my antics for the day..... it felt so good to see the floor of my closet and the bags full of stuff I would no longer have to look at ever again! Yippy!
Slowly I will dig out of the last 3 years. I will get to all of the stuff I have not had the time or energy to even attempt to accomplish! Slowly!
This morning the boys left for the cabin with grandma and grandpa so tonight after my closet adventure Makenzie and I cuddled on the couch and watched a movie. Now my house is quiet and I think I am going to try to finish what I started! Wish me luck!
Believe... Prayer Works!
Thursday, November 25, 2010
For each new morning with its light,
For rest and shelter of the night,
For health and food,
For love and friends,
...For everything Thy goodness sends. ~
Ralph Waldo Emerson (1803-1882)
"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus." 1Thess. 5:16-18
I would like to think that I am thankful for what God has given me more then one day a year. However, on this day when most everyone spends the day with a heart of thanksgiving it seems to up the ante a bit.
I could give you a list o mile long of all the "things" I am thankful for but this year I feel those "things" to pale in comparison to the people and relationships in my life.
Having a child with special needs brings the necessity for many "things" such as wheelchairs, suction machines, feeding pumps, therapy toys and tools, augmentative communication devices, modified cars and homes, amongst many, many other things. For all of these things we have been able to provide for Makenzie I am so very thankful but for me the great healing of God can not be realized by any one of those "things".
However, there are many people in our lives that have been the healing hands of God and sanity for my soul.
For starters, of course my family. Even though my family does not always understand what I am going through or why I do the things I do the way I do them, their love for me has never faltered. They have walked by my side through all of the good, bad, and just plain ugly! For my family, I am eternally grateful!
Makenzie has also had many therapists over the last 3 years. I am grateful for each and every one. There are several however that have seen it all and love Makenzie very deeply.
First Makenzie's PT, Pam. She has known Makenzie for her whole life. She was one of the first people I called after her accident. Pam came to "see" Makenzie in the hospital and was the only one who was successful at getting her to truly relax! She has been there for me on many levels over the last 3 years and has worked with Makenzie 3-5 days a week, never once giving up hope for my beautiful girls full restoration! For Pam, I am eternally grateful!
Stephanie is Makenzie's OT. She came into our lives after several of Makenzie's therapists where not able to meet her needs. She started working with Makenzie a couple times a week and is now also a huge part of our lives! She has traveled to California and Costa Rica with us for IMOT and stem cells. She loves Makenzie deeply and continues to step up to the ever changing challenges of Makenzie. She does not accept anything but the best from my girl and pushes her to the max. For Stephanie, I am eternally grateful!
Christa is Makenzie's PT at the clinic. She has been seeing Makenzie since we were discharged from rehab. She brings a great second set of ideas to the table. Makenzie's loves to go "play" with Christa. Christa has provided us with many resources and has been a wonderful support during many times of frustration and uncertainty. Christa pushes her and also believes deeply in Makenzie! For Christa, I am eternally grateful!
Jill has brought us a whole new world of communication . As her speech therapist she helped me decide what the best way for Makenzie to communicate to the world was! The first time we met with Jill I spent the rest of the day in tears because she unleashed Makenzie's voice. Even though communication is a times painfully slow Jill has never given up on Makenzie. She stands firm on how many things she knows and understands, never ceasing to believe in Makenzie's ability to communicate. She has advocated fiercly for my princess when it comes to school issues and is convinced that one day soon Makenzie will be moving herself in a power wheelchair. Jill also shares a deep love and commitment to Makenzie! For Jill, I am eternally grateful!
I am also thankful for Makenzie's rehab doctor and pediatrician. In a place where western medicine is so highly utilized these 2 doctors have supported me on all of my crazy quests for alternative therapy. They have been there for Makenzie and the boys at all hours of the day and night. Hours have been spent talking things through with both of these doctors and never once have I be made to feel like a bother. They have given all of my kids the very best care possible and stood up numerous times to a very unbending system on Makenzie's behalf. I trust both of these doctors with my children's lives and words could not tell you the impact they have made on this family! For these doctors, I am eternally grateful!
Last but not least, I am thankful for the many people I have met on this journey. Some of you I have gotten to know well. This blog has allowed me not only to share Makenzie's story but also share in your stories. To reach out to others, to laugh, to cry, to celebrate, to grieve, and just be with others who walk down a similar road. You have allowed me to feel the power of prayer and love from all around the world. You have given me the support I have needed when I don't feel I can go on. For all of you, I am eternally grateful!
What a ride the last 3 years has been!
Believe... Prayer Works!
Wednesday, November 24, 2010
I can't believe Thanksgiving is tomorrow!
Makenzie decided that midnight would be a good time to get up and have congestion so we hung out for a while. She did alright today but the runny nose continued all day. So instead of heading to church we called it a early night in hopes that Makenzie and I can get a better nights rest tonight!
I spent some time this evening cleaning out my desk. I ran across some cds which had some old pictures on them. I decided to take a peek and man was that fun. My kids have grown up so much in the last few years!
Around the holidays I spend a lot of time thinking about life... I think about where we have been and where we are going.
I think a lot about the five years of Makenzie's life and about how drastically her little life has impacted this family's direction and how much she has touched so many lives. I think about all the tears and pain. I think about all the triumphs and joy. I think a lot.
Looking at so many pictures tonight made me realize how proud I am of all of my kids! We have weathered some of the hardest storms a family could weather and made it through. The light at the end of the tunnel is illuminating my home and hope is abundant. This journey is far from over but I am so thankful for where we are today!
Here are some of the pictures I came across today! The ones of Makenzie in the hospital I had never seen before tonight. They are some of the very few pictures that were taken during her time in the hospital! What an emotional walk into the past but oh how amazing it is to see just how far she has come!
Makenzie at 9 months.
Makenzie at one year.
These pictures where taken in December 2006, three months before Makenzie's accident.
Makenzie about 2 weeks after her accident.
The boys look so little in this picutre taken while Makenzie was still in the hospital!
Our family today.... ok well several months ago but.... LOL!!
God is so good!!
Believe... Prayer Works!
Tuesday, November 23, 2010
This morning Makenzie woke up with a bit of a runny nose. Her therapist called and cancelled so I decided to just take it easy. Makenzie and I cuddled and read books. We giggled and laughed. Man I love that girl!
I got to thinking about the common cold. I thought back to how bad a simple cold effected Makenzie pre stem cells. I remembered having to stop Makenzie's feeds and give Pedialyte I thought about how long it took to get Makenzie back on track after a cold. I thought about the ambulance ride at about midnight over secretions that were too thick for Makenzie to handle.I used to be so afraid at the first site of a runny nose. I knew what was coming.
Knocking on wood, the common cold these day is just that.... the common cold. Stem Cell therapy really helped Makenzie's immune system. It has been a very noticeable night and day change. A change that was worth every dime, worry, and second we spent on this therapy.
Makenzie had a great day. She tolerated all of her food at a normal rate. She was happy and we enjoyed relaxing together. Makenzie played with my phone and some how managed to delete my facebook widget. There were no phone calls to any companies, her pump worked like a charm, and Toy Story 3 was enjoyed by all four of my kiddos before bed!
Tomorrow begins the long weekend. It begins the baking of sweet potatoes and turkey. It begins the overwhelming spirit of thanksgiving. It begins the dragging out of all that is Christmas. It begins holiday music, hot chocolate, and candy canes. It begins the reality that yet another year has almost come to an end.
What a great year it has been!!
Believe... Prayer Works!
Monday, November 22, 2010
Tonight after a long week of pump problems I got a new box of bags delivered. However as with most things Makenzie, it did not come without hours of phone calls, ladder climbing, and repeating myself about a hundred times.
Thursday I called Moog, the company that manufactures the Zevex pump. I ran through what had been going on. I told them we had switched out the pump 3 times, but that didn't help. They told me they were going to overnight me a new pump door even after i told them I believed the problem to be in the bags. I mean really what do I know, I am just a mom. So I left it at that. Friday or Saturday there was no new door but the pump was now not pumping more then 3/4 of a feed. We get one bag per day and I used 3 on Saturday!
So Saturday evening Makenzie's HHC company brought us a few bags from a different lot. These bags worked like a charm. Today I got on the phone with the HHC and we conferenced called Moog again. I have to say we talked to one of the rudest customer service reps that must exist! After she told us both matter of factly that she had never heard of any issues with their bags she told us that she would call the clinician I had spoke to on Thursday and find out what was going on.
Now me being me, and me knowing what I know about situations like this, I immediately called back and asked to talk to a supervisor. Of course there where none available so I left a message. Now being me AGAIN, I called back and asked for the contact number for the state rep and promptly left him a message as well.
To make a long story a bit shorter, the rude rep never called my home health company back, the supervisor never called me back, but the state rep did and tonight I have a brand new box of bags hanging out at my house and a new pump door to install onto Makenzie's pump.
"I just want to be able to feed my daughter. If I could feed Makenzie through her mouth I would but that doesn't work very well! This is the reason Makenzie is your client and why my insurance company dishes out hundreds of dollars a month to you. So if you would please help me help her that would be great! "
I must have told 10 different people this in the last 5 days but my persistence paid off!
Sometimes I wonder what these "professional" people think of me? I wonder how much eye rolling goes on? I wonder what is said after the phone gets hung up? I wonder if they even realize how important there job is to the health and well being of the many people they serve? I wonder if they have ever thought about what it would be like to be at the mercy of a company and their products to simply put nourishment into their child's body? I am guessing for the most part, the answer is no.
I did not write this post as a pity party to tell you how hard my life is but more as a post to proclaim victory over a system that is sometimes so very broken. I write this post to help educate about the day to day battles that are fought for Makenzie and every other child and adult who relies on medical equipment like this to achieve health.
As wonderful as Makenzie is doing she can not live life to it's fullest without her little blue feeding pump and every piece of tubing that goes with it. This stuff can't be bought at Super Walmart at 11:58pm. It has to be planned, ordered, and shipped. Someone has to be available and willing at a moments notice to fix it when it breaks. This is another part of my life that I embrace and am proud to claim victory over when the system wants to try and turn a blind eye to its most fragile.
Believe... Prayer Works!
Sunday, November 21, 2010
As I watched this video this morning I smiled and I got tears in my eyes. I thought back to when peanut butter sandwiches were a favorite and corn dogs and mac and cheese made the whole clan smile.
I searched my mind think about all of the things we have done over the last 13 years and find myself a bit sad that my babies are now embarking on man hood.
In the age of the digital world I realize how many pictures I have not printed and stored in albums and wonder were many of my pictures have gone. Broken computers and fried hard drives have eaten many. About a year ago I finally smartened up to the external hard drive but even that isn't perfection as you must back up the hard drive for it to work!
This morning I want the last three and a half years back. I want the seemingly stress free life of soccer games and school functions. I want to frolic in the park and watch my babies squeal while I push them on the swing. I want to watch as each of them learn how to ride a bike and most of all I want the guilt that somehow the last three years could have been different to subside.
I know in my heart that I am doing the best I can. I know this for sure, but how do I get back to that place of soccer games and school functions amidst the therapy, g tube feeding, reflux, and lack of the right equipment (which would make every activity so much less physically draining). How do I muster up more energy and motivation.
How do I maybe just accept that all of the busyness most of the world sees as a necessity is not all it is cracked up to be. Maybe it will have to be enough to just enjoy today for what it is, because today is really all that we have!
Today I have 4 amazing kids who are growing up way too fast but that is ok because they are growing into the most wonderful young adults I have ever known!
Believe... Prayer Works!
Saturday, November 20, 2010
This afternoon Makenzie and I were sitting on the couch watching a movie. I had given up on any productivity because nothing was going right. I had Makenzie in one arm and my phone in the other playing bejeweled. Makenzie kept touching the screen "messing up" my game. I looked down at her and said. "hey you stop touching my phone your messing mommy up." It wasn't until I reached the end of my sentence that I realized what had just come out of my mouth.
I had to tell my daughter to stop TOUCHING! I am not sure I ever thought I would being saying that to Makenzie. As I sit here I am still in awe. This is not the first time Makenzie has touched my phone but it is the first time I realized how much she is actually using her arms. This was a child who not very long ago had no idea she had arms and did not do anything purposeful with them at all.
With a smile on my face I looked down at Makenzie and asked if she wanted to help play mommy's game and a huge smile crept across her face. Makenzie I took turns playing. Makenzie had her pointer finger out and slid the jewels across the screen. She giggled and her mommy's heart filled with joy and thanksgiving!
After that moment on my couch with my amazing miracle Makenzie the fact that I was still having issues with her feeding pump didn't seem to matter. Running out of propane while trying to cook 12 lbs of ground meat for Makenzie's formula felt like a non issue and not being able to unscrew the tank from the grill so I could run to the store for more was forgotten. I could have cared less.
Here is a video of Makenzie playing with her iPad. It is not the best video but it serves the purpose of showing how well Makenzie is doing with reach and touch. The app she is playing is called "shapes". Makenzie is also doing a GREAT job of identifying shapes with great consistency.
After about 30 minute of reaching I took the work out of it and Makenzie and I had fun with Fireworks. Her laugh is so contagious!
I got new bags for her pump this evening and that seems to have fixed the problem. The HHC company I get Makenzie's supplies from is amazing! They have bent over backwards to make sure we have everything we need and when we need it even if it is Saturday night! Thanks!
I still have 12 lbs of meat in my fridge that needs to be grilled but tonight my dad came over and saved the day by getting the tank off. Tomorrow after church I will exchange the old for the new and you will find me standing out in the cold flipping burgers! Is there anyone who would like to join me for some burger weighing, pattying, cooking, and storing fun? Come on over... it will be a blast!
I am so glad Thanksgiving is in just a few days because this mommy has a LOT to be thankful for!
Friday, November 19, 2010
For the first time today since Makenzie's accident I went to the school to help in my son's 4th grade class room. There really wasn't a ton of help needed but my son was so happy to
me his sister!
It was so much fun to watch him introduce Makenzie to all of his friends. It was a simple this is my sister Makenzie. There were no explanations about her wheelchair, her lack of head control, or her drool. She was just his sister. He loves her so much and as I watched this event unfold it was very clear that even in the presence of people that do not know our family, he sees nothing different about Makenzie. To him there are only 2 words that describe Makenzie.... My sister.
Of course there were the common questions all kids ask...... can she talk, can she walk?...... I have stopped giving the whole explanation I just simply say no and if they ask why..... which is about a 50/50 crap shoot.... I will explain that Makenzie's brain is hurt and this makes it hard for her to do those things. End of conversation.
K pushed Makenzie around in the hall for a few minutes while I talked to his teacher about what help she may need. This attracted many of my son's classmates right out the door to see what was going on. There was one little girl that insisted on pushing Makenzie around too!
Makenzie helped her brother color a BINGO card and then we all sat down on the floor to play. Can you guess who got the first BINGO..... yep..... thats right..... Makenzie did! LOL!! We had a great time!
After BINGO the class headed to another classroom to watch and movie and Makenzie and I headed home.
As we were leaving the teacher invited us back on Monday to help make edible Maps! You better bet we will be there! Apparently parents only screw up the dynamics in certain classrooms.....cause we were sure welcome in this one which made me one happy momma!
I am so glad that we got to spend this time at school. Makenzie even saw a few of her friends in the hallway. They were so excited to see her after 6 weeks! It made me a bit sad because she was so loved at school! She had so many friends but she wasn't safe and there were too many other loose ends that weren't getting resolved for her to attend. I really do hope that one day all of these issues can be resolved but for today we will have to just hang out with the 4th graders!
Here is a song that was posted by a friend on facebook this morning. It is a beautiful song sung by one amazing little girl!
Believe.... Prayer Works!
Thursday, November 18, 2010
After life calmed down a bit tonight and I could breath I sat and admired all of my children at the dinner table. Makenzie was sitting in my lap laughing at the boys while they ate and we talked about the day. Even as much frustration as day brought in that moment with my family it was worth every single second!
Shortly after I clicked publish on the post I wrote a few hours ago I received another call from the seating company. The news was good. A cancellation. Makenzie's chair will now be done on Dec 14th instead of the 29th if everything goes well and we get a good mold the first time around. I was elated. I apologized for my snarky attitude earlier and we hung up.
Even though I apologized, part of me has no regret. Had I been sweet as pie she would not have called me back to reschedule. She would never have given Makenzie's appointments a second thought but..... she did because my passion for what Makenzie needs was very obvious.
I try really hard not to be snarky but it really does get the job done in the medical community. If you push hard enough and loud enough people listen. Today Makenzie's voice was heard! Thank you Aspen for listening!
As I laid Makenzie down to bed and I looked into her big blue eyes I felt a sense of guilt wash over me. Guilt for being so frustrated. Guilt for wanting to throw the towel in. Guilt for forgetting why I get snarky. I kissed Makenzie's check and she smiled. As she drifted off to sleep I watched. I took in every breath remembering why days like today are so important. Today is done and tomorrow is coming. There may be more frustrations on the horizon but it is all worth it in the end!
Believe.... Prayer Works!
So the last few days have been amazing! Makenzie continues to do very well but today I am done. I am done jumping through other people hoops. I am done holding the hands of the organizations we work with attempting to get them to do their jobs. I am tired of filling out paper work, finding receipts, making appointments for ridiculous unimportant stuff just because some government agency says I have too.
Remember my post on privacy? Yeah, today was the train wreck of exactly what I was talking about in that post.
Yesterday was one of those days where you wished the mailman skipped your house. I got a notice of meeting from SSI. I get the pleasure of bringing with me all check stubs for any income I have received for December 2008 until now. REALLY? They will not accept a statement or earning nor photo copies unless they are certified! However, I have all of the stubs.... in one big unorganized pile...... that I now get to go through and organize before this funtastic meeting!
Then I got another letter confirming the need for IQ testing in order for Makenzie to qualify for funding through our county. Even better I get to find someone to perform the test and pay for it. Yeah me! I could care less what Makenzie's IQ is!
On to the need to hold the hands of those who are responsible for putting together the appointments to get Makenzie's new wheel chair together. It took a week for them to do nothing but when I stuck my two since in there were 3 appointments made for completion within three hours.... hmmmmmm. The chair will still not be ready for Makenzie to use until December 29th which makes me really upset. I was hoping Makenzie would have it by Christmas so that she would have the needed support to be able to help open her presents for the first time since her accident. This brought tears to my eyes to think about another year going by without that happening. Frustrating!
And last but not least I am still having issues with Makenzie's feeding pump. Today I contacted the manufacture and did not really get anywhere after 2 phone calls and over an hour on the phone. I was asked if I could kindly call back and file a complaint because the woman I was speaking with did not have the ability to do so. Why not? I kindly told her I would when I had time to make another lengthy phone call. They are going to send me a new door overnight but I am not seeing how that is going to help but it's all I've got at this point!
So Makenzie is physically doing so well and I am grateful. That is what matters in the end but getting there sometimes can be so utterly frustrating! Jumping through the same hoops over and over is just not what I had planned for today!
(If you ever wanted to know what those beautiful blonde locks of hair look like in the morning before I do Makenzie's hair..... here is your chance!!! We had a slow start to the morning but she did so good today in PT I had to show off her sit to stand skills... bed head or not!)
I am praying this evening goes a bit smoother. I guess in about an hour there will be no more buisness calls at least.... that will be nice!
Believe... Prayer Works!
Wednesday, November 17, 2010
The above picture is of Makenzie before her accident when she was about 4 months old. I love this picture. In fact it is one of my all time favorite pictures of Makenzie. I think it is those big blues that just take my breath away every time I see it!
I am pretty sure, if my memory serves me right, I even entered this picture into a baby photo contest shortly after I took it!
Tonight as I looked at this picture of Makenzie on her stomach staring at the world,I saw developmental milestones. I see a set of skills that I now know by medical definition. I could tell you each and every muscle group that needs to activate and when, to accomplish the seemingly simple task of lifting your head up while laying on your stomach.
I look at that picture and see my beautiful princess. I see the same amazing little girl laying on the floor working with all her might to activate her muscle groups at just the right time in the perfect order. I see a fighter. I see a miracle. I see a little girl who is just as utterly perfect as she was the day she was born.
This picture reminds me of where we are going.... even if it is like watching grass grow! We will get there!
Join me here for a photo carnival hosted by Love That Max!
As for our day today.... it was crazy busy but Makenzie did so well!!!
We started with therapy at home. Makenzie was a rock star. Her therapist continues to be overwhelmingly amazed every day with how much more movement Makenzie is getting in her whole body! She is so much loser but most noticeably in her shoulders and hips!!! God is so good!
We then hurried to Makenzie's first swimming lesson. The pool was beautiful and Makenzie showed off her love for the water! After she got over being shy she was all smiles and giggles! Makenzie chased after a fish that squirted water. She jumped off of the stairs, she propelled herself through the water by pushing off of me and showed her instructor how she could roll over in the water.She loved every second of it. The cool part is the water was warm and the pool area was just as warm so there was no getting cold! Good stuff!!!
After lunch we headed to the clinic for more therapy and Makenzie continued her streak of amazingness. She did great in standing and then when we moved to crawling Makenzie look off!!! Her legs were going at least 60mph! The only problem.... she wasn't moving her arms half as fast.
I pulled a roller board out from under one of the tables and suggested we put Makenzie hands on the board so that she could move herself with her legs. Lets just say Makenzie LOVED it! I have never ever heard Makenzie do anything but cry in the crawling position but today she laughed and squealed the entire time!
It was a wonderful day! I am so full of hope for Makenzie! I feel so blessed! Tomorrow is another full day of therapy fun! Pray that her amazingness flows over into tomorrow, and the next day, and the next day, and the next day, and the..... ok I am sure you get the point!!!
Believe... Prayer Works!
'Behold, I will bring it health and healing; I will heal them and reveal to them the abundance of peace and truth (Jeremiah 33:6)
Tuesday, November 16, 2010
This morning I woke up to Makenzie's pump beeping. This is normal. However the bag being half full of water still is not. The beeping on Makenzie's feeding pump has become something that I sleep through very well! Normally if the pump works the way it is supposed to there is no problem however lately it has been malfunctioning here and there not sensing there is "food in the tube.
Makenzie gets plenty of liquid during the day to stay hydrated but she needs the extra water at night or she has a hard time going to the bathroom which sets of her reflux and the cycle goes around and around.
Today I had enough of my malfunctioning pump and I called the home health care company to have it replaced. They sent a new pump out before noon and I hooked it up to feed Makenzie lunch. This pump alarmed right off the bat. No matter what I did it told me there was no flow or no food! Ahhhhhhh, So I ended up feeding Makenzie with a syringe which went ok but not ideal.
Within the hour we had another pump delivered and so far so good!
This kind of stuff used to send me into a tail spin. Panic would set in over the potential of throwing off Makenzie's schedule. Today Makenzie's nurse and I just laughed as I pulled out different supplies to begin lunch despite our little technology issues. I love being able to laugh instead of cry about this kind of stuff!
This afternoon I had a meeting over the phone to re write Makenzie's IEP. It was the best IEP meeting I have ever had! Believe it or not Makenzie will be receiving more professional services being home schooled then she received at the public school!
We are still waiting for the PT and OT to review Makenzie's file and give their recommendation on a weekly amount of services but for now I do know that Makenzie will be receiving 2 extra sessions of speech therapy every week! WOW!!!
We talked about educational goals and how that would look for Makenzie. We talked about what Makenzie would be except from doing and how other part of the curriculum could be modified to meet her needs. Slowly but surly my princess will get a free and appropriate education! (FAPE)
Last but not least I have a winner for the Affordable Weighted Blanket Giveaway! Chosen by a random number generator, comment number 31 is the official winner! This comment was made by the author of the blog The Henry Family! Congratulations! Please send me an e-mail at makenzies(at)comcast(dot)net with your address so that I can mail your gift certificate to you!
Well tomorrow we have a busy day so I am going to head to bed!
Believe... Prayer Works!
Monday, November 15, 2010
Here are some pictures and videos from the last couple weeks!! I thought I would do a post in pictures. This is my second post today so if you missed the first one you can check it out here.
Makenzie LOVES playing with her PT!
Rolling on the ball is one of her favorite things to do!
Giggles and smiles are abundant!
Standing is fun too and I am doing so much better with weight bearing into my feet.
Makenzie was watching her PT she was so attentive to what was going on!
Mommy bought me a "space blanket" for me thanks to her friend Shauna posting it on her blog!
I love to play with shaving cream during OT! I also learn my colors at the same time!
Skating with my brothers is one of my favorite past times!
Here is me rolling! I am doing so well and think that it is a ton of fun to play games with mommy!
Photo Sharing - Video Sharing - Photo Printing
Makenzie kept up her not wanting to go to bed shenanigans last night. I let her cry for a good while and eventually she stopped..... or so I thought. I went up to check on her and found the door open and her brother laying next to her. He couldn't take hearing his little sister cry anymore. What a great big brother he is! However, this meant I had to start all over on the quest to get her to go to bed! She did finally and so did I. This pattern however is not really working out very well for me because I have stuff that needs to be done before I go to bed! Oh well! No use crying over spilled milk right?
Meeting new people is always fun. In the last couple of weeks I have spent
some a lot of time getting to know another mother who has an amazing son, Giovanni. When Giovanni was born it was quite a traumatic experience. He suffered global delays but it now a happy three year old who has stolen the hearts of many!
Giovanni's mommy, Christina and I met about a year ago at a park while getting our picture taken with so other friends. We began to talk on Facebook here and there and then I called to talk to her about the FUNDO we have considered for Makenzie. Well, hours later we have talked about anything and everything.
For me this is very therapeutic almost. Sometimes I wonder if what I write down is how I really feel. Talking to someone new, telling the story of Makenzie over from the beginning, hearing someone else's story from the beginning, hashing out old issues and new, makes me realize that I do.
So what do I feel? I feel at peace.
What does that really mean? For me it means that even though the unimaginable happened to my daughter and even though she has not been completely restored I am happy. I love Makenzie for who she is and I realize that she may always have special needs but I also have hope that she will continue to grow and heal and progress forward.
I realize that each and every type of alternative and traditional therapy that we have done was well worth the time and energy and we will continue many of these therapy's.
Why then you may ask if I am at peace and realize that Makenzie may have special needs for the rest of her life would I continue putting the time and money into therapies? Well, another one of my friends said it best here in her journal on November 11th 2010.
"I want to have the VERY. BEST. BRAIN. INJURED. CHILD. THAT. I. CAN. POSSIBLE. HAVE!"
Love it! I love how so many of us mom's of special needs grieve in so many different ways but at the end of the day what we want for our kids is so much the same!
My thoughts on it are this.... I want each of my boys to succeed in life. I want them to be the best that they can be. When they decided what that is I will support them in any way I can. I will invest money in their college, I will invest time, I will support and respect them for whatever they want to do with their lives.
However, that does not necessarily mean that they will succeed. (as their mom I would love it if they did!) Even if I spend hundreds of thousands of dollars putting my kid through medical school, this does not mean he will be a successful doctor. At the end of his residency he may end up deciding to be a teacher in a third world country and that, would make me equally as proud!
The point being, brain injury or not, there are never any guarantees in life but that doesn't mean we don't set our hopes and dreams high and try till we can't try any more!
So I will continue to expect Makenzie to be the best that she can be as well, trying whatever God leads us to and walking through open doors!
Believe... Prayer Works!
PS I have some fun pictures and videos that I will be posting later tonight.
Sunday, November 14, 2010
Something you may not know about me..... I am NOT a morning person! It doesn't matter how much sleep I get the sun will always rise to early. I especially do not like mornings after Makenzie has decided to wake up at midnight and still be awake at 1:30am!
I am pretty sure it was because she had been completely overstimulated and tired.
It was all worth it though because we had a great time at a party my friend Susan threw last night. It was a celebration party for the win and settlement on Julia's vaccine case, the retirement of her mom, the birthday of her mother in law, and the change in career paths for Susan! WOW! There were a lot of people there. It was loud and I think half the canine population was also there.
Something you may not know about Makenize...... she is very afraid of dogs.
So we claimed one room as a dog free zone and Makenzie had a great time! All giggles and laughs.
We met a ton of really great people. Susan introduced me to one of her friends who has two children with special needs. We sat and talked for a long time and really enjoyed our conversation! About 8:30pm it was time to go. Makenzie was getting tired and I could tell the noise was begining to get to her so we loaded up and headed home.
When we got home I put Karate Kid on for the boys and I laid down with Makenzie and fell asleep. This seems to be happening a lot lately! I wish that could be the end of the night for me but I still have to get Makenzie's overnight water going and dose her meds so at midnight I woke up and crawled out of bed. When I got up I looked over at Makenzie and there she lay, eyes wide open just smiling away! Ahhhhh! I got up and shut the door hoping that she would fall back to sleep.... no can do.
After getting her up, laying on the couch for a little while and putting her back in bed I think she finally went back to sleep about 1:45am! I gave her a few minutes and then started her water and headed back to bed myself! Oh the sweet pillow!
As much work as it is to get 4 kids out the door and as little sleep as I ended up getting because of Makenzie's sensory hangover it was a great time and I am so glad that we went!
Makenzie is finishing up breakfast and then it will be off to whatever today has in store for us. Tired or well rested the world keeps on a spinning! Wish me luck!
Believe... Prayer Works!
Friday, November 12, 2010
I watched this video....it brought tears to my eyes.
Broken is so amazingly beautiful. But really, what is broken? I look at that little girl, Sarah Grace, in the video and I see amazing! I look at Makenzie and I see amazing. I do not see broken, however, as much as I hate it.... most of the world does.
More and more though it does not matter to me. I have met so many wonderful people who see the same amazing beauty I see when I look at Makenzie. People who understand the lengths I go to in order to see Makenzie has everything she needs. I have met people who get my passion for the cause.
Today I verified that the wheelchair process is moving in the right direction. Therapists are being contacted, the base has been ordered and should be here within 7-14 days. Before Christmas Makenzie should have a new wheel chair. Words could not begin to describe my excitement! A huge thank you to the people who have fought for this "cause" for so long on Makenzie's behalf! It means the world to me and my family!
This week I have also been looking into ways to get Makenzie some social interaction since she is not going to school. Today I enrolled her in swimming lessons at a warm water pool! Makenzie LOVES the pool and I am so excited to see how she responds when she is in warm water instead of ice cold water. We will start this next week!
I am also exploring story time at the library, an open gymnastics gym, and a music class through the rec center.
Stigma or no stigma, broken or not broken, I am guessing all of the new people we meet during these activities will fall in love with Makenzie...... because...... she is simply amazing..... Just the way she is!
Believe... Prayer Works
Thursday, November 11, 2010
So the monkeys threw half of my hats down yesterday! If you have no earthly clue what that means read this.
I got a letter of approval yesterday for the wheel chair base. We are getting the seat from a different company therefor it is a seperate order so we continue to wait. Makenzie's seating specialist seems to be optimistic that it will be approved so I am going to be optimistic with him!
Last night I fell asleep with Makenzie at 8:30pm. I woke up 2 hours later, made her water, dosed her meds, and crawled back into bed. I got about 9 hours of sleep which is a record around here! Today I feel so much better. I am not sure how to make that a regular habit as there is just not enough hours in the day but I am going to try.... harder!
Makenzie is doing so very well! Since we have been using her new Sure Step braces, Makenzie's body has been so much looser. Other then a bit of reflux we have not had any vomiting and she is much more comfortable on her belly. I am so excited to see her less flexed and so happy!
Life is funny like that.
How does one small pair of plastic "shoes" make that much difference.
How about two pieces of fabric sewn together with plastic pellets inside to make a "weighted blanket"? Simple right?.... but oh so helpful, offering much needed SLEEP!
Then there is the long awaited admission that it is not possible for me to do everything and asking for help. This leading to the hiring of a really amazing woman who has brought back my sanity.?
Did these things cure Makenzie?.... no..... but hey sure do help!
As the mother of a child with special needs I find it a bit hard to know that there may always be the need to lean on things like weighted blankets, braces, wheelchairs, and hired help may never end. There will always be home heath care company's, therapists, support groups, IEP's and waiver programs with waiting lists that make you want to pull out your hair.
There will always be those who don't understand the struggles in getting Makenzie what she needs and feel you have an attitude of entitlement around your child's services. Then there will be those who think because they have helped you, some how, at some point, they have a say in your life and how you live it.
My life will never have the same sense of privacy again as the weekly appointments and yearly reviews continue to be held in my living room. Some on these said meetings require answering pointed questions about all aspects of your life.
What set this off you may ask?
Today we had a yearly review with an organization Makenzie receives services from through our county. The two ladies that came were very kind and knowledgeable but after answering what seemed like a hundred questions about things like, are your other children happy and doing well?, have your family dynamics changed?,
This threw me over the edge! Apparently if Makenzie's IQ is over 70 she does not qualify for services regardless of any physical limitations. Hmmmmm, because if she is a rocket scientist that will somehow make it easier to physically care for her and she will magically need less? What ever...... I will jump through their hoops and this may be the first time I pray for Makenzie not to be as smart as I think she is!
After saying all of the above I also want to say that I love my life, privacy or not. I love the people I have met along this journey, even the ones who ask me questions that I think are a little too invasive. I love seeing the passion, the unfailing love , and the belief in healing the therapists have for Makenzie. I love advocating for Princess Makenzie even if it requires throwing in the towel sometimes. I love seeing how hard the people at the home health care companies work to continue to provide for Makenzie in order to keep her safe and healthy.
It is my reality and even though it has taken some getting used to, I love it..... even if I can't do it all myself!
On a side note, please don't forget to enter to win a $100.00 gift certificate at affordableweightedblankets.com. here. The comments will close for this giveaway on November 15th 2010~ Don't miss out on your chance to win!
Believe... Prayer Works!
Tuesday, November 9, 2010
I get asked often if I still love the iPad. My answer to the question is YES and continuing to grow everyday! There are so many new and amazing things being developed for the iPad relating to special needs and communication every day!
With this said I want to tell you about one of my favorite apps, Tapspeak Sequence. Tapspeak was created by Ted Conely, father to an amazing little boy with CP. After becoming frustrated with the lack of appropriate devices which could help his son learn how to communicate, he formed Conley Solutions
I have been using Tapspeak Sequence with Makenzie since this summer and find new uses for it every day! This app allows you to program sequences into the iPad that are customized specifically to your child. You can record your voice or anything that makes sound into the app along with importing pictures, using the preloaded symbols or Board Maker images (sold separately) in the customization process. It also is Tap configurable to accommodate kids with varying motor skill levels.
For Makenzie we have made a lot of learning activities. We have imported images of letters and picture cards and made sequences that spell her name and recite names and sounds of the alphabet. I have read books into the app which has allowed her to participate in reading the book while I turn the pages.
The Tapspeak Sequence app is easy to use. The ease of use makes it easy to make more learning and communication aspects of everyday life available to Makenzie. Since I have been homeschooling Makenzie I have been able to read through the lesson plan and add different things like patterns, colors, numbers, beginning, middle, end, and phonics, quickly into the app for specific use during that days lesson. I am in love!
In the time I have spent using this app I have realized that not only is Tapspeak Sequence a wonderful tool for children/adults with special needs but for all children. My boys have used this app as well as vocabulary study cards for a test and math facts. Did I already tell you I am in love! Point being.... if you have a child of any ability and a little bit of creativity this app is for you!
Here is a video review I made explaining what Tapspeak is and how to use this app.
The developer of Tapspeak Sequence has also developed another app called Tapspeak Button. This app works just like a Big Mac switch which says one phrase at a time. This could be good for phrases like "juice please", "That's the one I want", and "All done". Makenzie has used this app as well. Her favorite thing to say is "NO"!! LOL! There is nothing like giving a child their voice!
Now for the most amazing development so far... in my opinion...is the soon to be released by Tapspeak, Tapspeak Choice. This app will be portable, innovative, and socially acceptable communication device all built into your iPad. Wait.... I am not done.... it will also have "Direct access and many scanning modes including two-switch scanning built into the software. You will be able to use the entire iPad screen as a switch or RJ Cooper’s new Bluetooth external switches and accessories." Or in plain English... you will be able to use either the screen or a switch to activate Tapspeak Choice. Now that is AMAZING! To check it out for yourself click here! This app should be released some time this month!
So who wants one, or, two, or all three of these app? Ok well you can't have the 3rd one just yet....
Well one of you are in luck because Tapspeak has given Makenzie a set of the Tapspeak Sequence and the Tapspeak Button apps to give away to one of her readers!
Here’s how you can win:
( Make sure you leave a comment FOR EACH THING YOU DO. The winner will be chosen by a random generator based on comment number.)
1. Post Makenzie's Miracle button on your blog.
2. Follow Makenzie's Miracle on here or on Twitter.
3. Visit the Tapspeak website and share how you would use the app.
4. Like Tapspeak on facebook
5. Follow Tapspeak on Twitter
6.Post a link to this giveaway in a blog post, or in a tweet and leave the link here.
( I did not get paid for this post other then the apps I was given to review. This giveaway will end on November 30th 2010. This giveaway is open to anyone with access to iTunes.)
Monday, November 8, 2010
No monkeys got any caps from us today because there was no time to sit under any kind of tree for even a short rest! We went all day.
We did find some time to read a book about a bunch of silly monkeys who thought red, gray, brown, and blue hats were fun to wear. We shook our fingers and stomped our feet at those monkey and Makenzie laughed so hard. She attended to the the entire book loving every second.
Some days I feel like at I am shaking my finger and yelling at silly monkeys. Most of the time it is the insurance company's, doctors, and large institutions who I am stomping my feet at.
I called our insurance company about the denial for Makenzie's wheel chair today and hit a brick wall. They told me they could tell me why it was denied and what the status of the appeal was but as far as what I thought about it or any evidence I would like to submit about it's importance would not be considered. I just love being the "dumb" parent who knows nothing and will not be listened too.
Once they give a final denial.... which is 2 denials and 2 appeals away then I can ask for a court date. From start to finish we are looking at a year.... or more. I dislike monkeys!
Even more frustrating is that Makenzie will get the chair. She qualifies for it. She needs it and once we set a trial date more then likely they will settle in the last hour. This is the game they play. I dislike monkeys but even more I dislike games.
This is holding Makenzie back from so much.
At the end of "Caps For Sale" the peddler gave up. He threw his own checkered cap down, the only cap he had left. As he walked away all of the monkeys threw the caps out of the tree and peddler gathered his caps and continued on with his day.
Maybe my monkeys could be so nice and do the same?!
Believe... Prayer Works!
Sunday, November 7, 2010
Tomorrow Makenzie and I officially start our homeschooling adventure. I have been working with Makenzie since I pulled her out of school but it did not take long for me to realize that I needed a bit of direction. I had several options to choose from and in the end decided to go with a company called k12. This is an online public school. They have real teachers and specialists and it is all FREE. Makenzie was assigned a special education teacher and a regular ed teacher. They are working with me to adapt the curriculum to Makenzie's needs and by the end of the month there will be an updated IEP that is more then just "fluff"
I am feeling very good about this! Each and every person from this company has been so receptive to Makenzie's needs. I will sign Makenzie in every day, they will keep all of her records, and update her IEP, BUT I will be the deciding how Makenzie is educated. They offer get togethers with other family's, training classes, field trips and most all of the supplies needed including a computer.
Those said supplies arrived at my doorstep on Friday. Three big huge boxes. They piled on top of the supplies I had already purchased and then all over
my living room Makenzie's therapy room. So today I decided before we could begin this new adventure I needed to take control of all the stuff and get organized!
After church we headed to Target. I had taken careful count of what I had and about how I wanted it stored. I started out looking at plastic drawer systems but they were pricey and really I am sick of plastic drawers around my house. I have a stack of four for all of Makenzie's therapy stuff, a stack of 3 for her feeding stuff, and another small stack on my counter for her medicine and syringes. Enough is enough already.... right?
So I meandered over to the "furniture" section. There it was. It was not plastic. It did not look like a toy box and the crazy thing.... it compared pretty close in price to the plastic drawer systems. So I picked up the little but heavy rectangular box, along with light bulbs, and kitty litter and we headed home to put it together. HAHAHAHA
Lets just say I only had to take the wood looking laminate apart one time before getting it together the right way! Go me! Oh and I had some help from some very handy little men! Thanks boys!
So this is what I came up with. A clean organized room for Makenzie to learn in! I am pretty proud of all I got done in one afternoon!
I guess maybe I will have to start attacking the rest of my house with a little spring cleaning and organization!
So tomorrow you will find Makenzie and I in our newly re organized room learning our letters and colors. We will be giggling and making a mess! You may even find us cuddled up on the couch reading a book in between all of the bright colors and fun sounds of learning!
Believe... Prayer Works!
Saturday, November 6, 2010
Rest and relaxation. I got a bit of that today! Today was the first day all week that I had no where to be all week. It felt very good but at the same time a bit dull.
This week has been such a wonderful week. I have been on cloud nine and sometimes that makes my mind go non stop. This is a bad thing when it comes to sleep. I can't get my body to shut down. I lay in bed thinking about all of the great things that have happened, replaying them in my mind over and over. Weird I know! LOL Today however cloud nine or not I was tired!
In the middle of the week I got a phone call from a woman I didn't know. Turns out someone I knew had given her my phone number. She is a mommy with a little boy the same age as Makenzie. Her little boy has special needs similar to Makenzie's and she is also a single mommy. The best part.... she live like 10 minutes from me. I am so excited!
I was able to meet her and her son the next day when she offered to donate a Tumbleform feeding seat to Makenzie that her son had out grown . What a blessing! I can not wait to get to know her and her beautiful little boy!
Makenzie has been moving a ton more lately. Last night I laid with her upstairs. I started to play a game with her. One of her favorites. I roll her away from me and she rolls back over to get me. She giggled and laughed and then started rolling over onto her stomach instead of her side. She just kicked and wiggled. She seemed so comfortable which is usually not the case. She started bring her legs and bottom up like she was going to crawl. Then she pulled both of her arms up and started lifting her head off the ground. She can hold her head up prone but never ever has she initiated it by herself! Go Makenzie.
Then today I laid her on the floor again while I was working on the computer and when I turned around she had moved about 2 feet from where I had put her. She looked at me and smiled just as proud as could be! Movement, Movement, YEAH, Movement!!!
And finally there is the iPad... whether she is watching or playing she gets entertainment and learning! Kaleb had her laughing so hard last night while he played!
It was a great week! It was a somewhat sleepless week but I survived it! Tomorrow we will be heading to church and then I will be spending the day organizing all of this......
I think they shipped a whole classroom to me on top of what I already had! I am excited to really get going with this homeschooling but first I have to find a place to put all this stuff! LOL!
Well, it is now 10pm and Makenzie is still awake. I have tried gwtting her down to sleep since 7:30pm. I guess I am going to wrap this post up and go try again.
Believe... Prayer Works
Friday, November 5, 2010
Where to begin? So much has been going on in the last several days! So many blessings.
Today Makenzie had some little friends come over with her PT. She loved it! We played in the ball pit. We played with baby dolls, picture card, balls, and well anything those busy little girls could get their hands on! It was SO much fun! I told her therapist that we needed to borrow them to come and do therapy with Makenzie at least 3 days a week! LOL!!!
Yesterday we met with a surgeon who was recommend by to me by Makenzie's rehab doctor.
In the past 3 years I have consulted with 3 different GI doctors and one special care doctor about Makenzie's reflux and vomiting. All of these doctors all my shoved the FUNDO procedure down my throat as something I need to do for Makenzie. I have not ever agreed with them as the FUNDO is a treatment for reflux, not vomiting. The research I have done on it has been extensive and I have also spoken with many other parents who have children with some type of FUNDO.
Despite it all I was still left with a very mixed bag of feelings about the surgery so I decided to call and speak with the rehab doctor who was not trilled about the idea of a FUNDO for Makenzie and asked me to talk to a surgeon she knew. So I did.
To start our appointment I laid out all of Makenzie's struggles with reflux and vomiting. I went through her history with different methods of feed and formulas we had tried. I expressed my concern about the potintial side effects of the surgery.
After I was done the doctor began to explain his thoughts on the surgery in general and specific to Makenzie. He started by explain why this type of surgery would be considered for a child like Makenzie. The bottom line is deciding whether or not the vomiting is hurting the child. "Hurting" was outlined by the doctor in two different categories.
1. It the child's respiratory system is affected with such things a pneumonia, worsening asthma, or very serious choking spells.
2. Failure to gain weight or FTT
Makenzie falls into neither or those categories.
He then gave me 5 options:
1. Do nothing. Yes, vomit and reflux is gross but it is not hurting Makenize
2. Do the FUNDO. This where they take the top part of the stomach and wrap it around the esophagus allowing food and secretions to go down but "hopefully not come up. He told me that 95% of physicians will look at a child with Makenzie's symptoms and recommend this surgery. He does not. He told me he does do the surgery but every year makes a hand full of kid completely miserable because of the side effect which can not be foreseen until the surgery is done. This procedure can be reversed but it is almost certain that if done the reflux will come back worse then it was to start with.
3. They could place a Jejunostomy tube. This would mean creating another ostomy/whole on the other side of Makenzie's stomach. To do this they would go into her gut an reroute her small intestines to the second hole and she would be fed slowly through that whole with out having anything in her stomach. This would require Makenzie to be on the feeding pump for 12-20 hours a day.
4. Place a GJ tube through her current ostomy/whole. Been there done that. Makenzie was fed this way for almost 2 years. While it served its purpose it seemed to make Makenzie fairly uncomfortable.
5. A surgery similar to a gastric bi pass (weight loss surgery). This is the most invasive option. To do this they separate the stomach from the esophagus. They re route the small intestines to the esophagus so that the child can swallow their spit. The child is then fed from through the g tube and the intestines from the stomach and the esophagus meet at a y to finish the digestive process. There is more risk of infection and the chance the the intestines could kink and another surgery would be necessary to fix this issue. The other deficit is that other then swallowing secretions, comfort tasting, and small amounts of food, the child will be permanently unable to nourish their body by eating through their mouth.
I listened intently and at the end of the conversation the doctor and I came to the conclusion that the best option at this point for Makenzie is #1... Do nothing.
I am so glad that I went to this doctor. Not because I got the answer I was hoping for but because he is the first doctor that has been objective. The first doctor to look at my daughter as a whole and not just a puking child with CP.
I will continue to research and consider my options but for today there will be no surgery.
The reflux is not gone. There are still good days and bad days but I feel a huge weight lifted off of my shoulders!
Believe Prayers Works!