MICRO MIRACLE FOUNDATION
Logan’s Journey with Microcephaly
Logan was born on 4th February 2015, a perfectly healthy baby. Looked exactly like his older brother, Luan. From birth, Logan slept through the night, and was a very happy baby. Growing fast and reaching his milestones.
Yes, I tried breastfeeding Logan from day one, after a lot of tears and sleepless nights, feeling like I have failed my little boy, I had to stop, he was getting hungry, and so I opt for the bottle, with expressed breast milk. On his 6 week check-up everything was normal except his testicles - undescended testicles.
Logan went for all his vaccinations when it was due; the last vaccination was his 3 month (12weeks) vaccination. Just after 3 months, Logan’s head started deforming, which his left side being flat. However a baby’s skull is still growing at this age so we didn’t took too much notice at first. On about 4 months, his milestones started falling behind. When at 3 months he could hold his head up, he couldn’t do it anymore.
In July, Logan was booked to go for a minor operation to descend his testicles (Bilateral Orchidopexy). After the operation we asked for a paediatrician to examine his milestones and head deformity. Dr Rene De Gama saw him and advised that his fontanel had closed prematurely. An appointment was booked with a Neurosurgeon for the following week where Logan was then diagnosed with Craniosynostosis. Surgery was booked for 21st August where they would break his skull and open the fontanel so that the brain would have space to grow.
Logan was rushed to hospital as it looked as if he had fainted and was gulping for oxygen. As soon as he arrived in the ER, he was breathing and everything looked fine. Dr’s was worried about this and he was transferred to Unitas hospital for observation.
Logan had an EEG test done where they confirmed that he had been having convulsions.
Dr Lippert (Pediatric Neurologist), sent Logan for an MRI.
We received the news – Logan was diagnosed with Primary Microcephaly.
There is no cure for Microcephaly and the future could not be predicted.
The operation to open his skull would not be done any longer as the skull would close again due to the size of his brain.
Logan may never be able to walk, talk or ever be normal.
During August Logan had multiple seizures on a daily basis. He also developed Bronchiolitis during one of the hospital stays. He was then treated supportively but on the 24th August, his breathing became a problem. An ENT saw him and booked him for a Bronchoscopy.
Logan was diagnosed with Tracheomalacia. This means the cartilage in his windpipe cannot function normally. Due to this he could not even drink his bottle properly.
Dr Rene De Gama did everything she humanly could to assist us as a family to get through these trying times, she started sending all kinds of therapists to Logan in hospital to help him move, eat, drink etc…. We had a lovely occupational therapist come to him daily, Maryna, and a speech therapist to help him drink again.
Dr De Gama saw Logan more than once on a daily basis, she called the ward numerous times during the day to find out how Logan was doing, she just didn’t give up, beyond the call of duty I tell you!
On a Tuesday evening, Dr De Gama came to the ward to chat to me about possibly sending Logan to Rehab and trying to assist him with his milestones…now I didn’t even think that would be possible, especially at his age and diagnoses….
But Dr De Gama proved me wrong again … She did EVERYTHING and motivated to such an extent that they agreed to take him, and medical aid agreed to pay.
Logan was confirmed to be admitted into the Rehabilitation centre in Auckland park that afternoon!
Since there is no cure for Microcephaly, one can only give as much therapy as possible to try and make his brain develop the basics.
It felt like I was on cloud nine, in love with the idea of so many people helping my little angel learn the basics we take for granted…
At this stage, I couldn’t care less about the world, money, work etc and just wanted be with Logan 24/7….but reality hit me….i need an income to support my family and Logan's medical needs….
I need to get someone to stay with Logan at the Rehab Centre, I just cannot leave him there, and there is no way that my company will ever give me 3-6months paid leave.
So, I was left with no other option but to ask a family member to step in for me, the only family member that, thank God at the time did not have a daily job, and was so willing and able to stay with our little Logan at the hospital, Aunt Ella, who soon became our Angel-Ouma Ella….
Logan did extremely well in the Rehab Centre – he was lifting his head. Smiling and he was happy.
Our first Saturday out of hospital in Rehab and this should have been a happy day but ended in being the saddest. Logan started having seizures again. Every time he has a seizure, the chances of brain damage are almost unstoppable. His medication was increased and on the 6th November he was discharged from Rehab.
3 November 2015
My Dear Logan
It all started on the 31st of July 2015, my heart stopped beating, or so it felt, and the tears didn't stop for days, thats the last day we had you at home as a "normal" baby.
It has been 4 months of countless challenges, tears, hate, regret, questions, hurt, pain, fights and FEAR...my little angel, i don't know why you have the condition you do, not even the doctors or the countless tests can tell us, i don't even know if it hurts, if your in any pain, and that scares me, I'm the mommy, I'm suppose to know these things...i sit at night, thinking of what i could've done differently during my pregnancy, and i cry asking, why me???? I'm clueless, how do i care for you? How do i walk in public without trying to hide you to prevent questions i cant or don't want to answer? Seizures for a baby at 8months old is not something i ever thought id experience with my own children, when you get them, my whole body melts, feels like a heatwave running from my head to my toes, i feel weak and dizzy...and its fear, the fear a mommy gets when she has no control! I find myself staring at normal babies your age, and it hurts. Am i being punished? Am i doing all i can to do and give you what a mommy should be doing and giving? Am i missing something here? Am i having a nightmare?.....
Nooooooooo!!!! Its normal to feel like this ... i love you Logan, with every breath i take, and every beat of my heart! I asked myself why me 4 months ago, i ask myself now ... WHY NOT ME?????yes I'm going to face challenges that not all mommies face, yes I'm still going to cry endless tears, and I'm still going to want answers, and regret, and fight, and scream, and and and .... But all of that i will do over and over JUST FOR YOU! i have my own Angel Child, no matter how disabled you are, or how different your condition makes you compared to other children. All i care about is you, and that you are still breathing, smiling, kicking and at least trying!!!!! I will fight with you, and be there for you all the way! With tears in my eyes, joy in my heart .... i thank God everyday for being blessed with the opportunity to love and care for you, and call you MY SON.
Logan Gene Muller this is my life now, i am the proudest mommy of 2 handsome boys, and will not EVER change a thing about you!
From my heart, to your ears my little Angel
Mommy loves you!!!
In December, Logan was admitted to hospital again for uncontrollable seizures. His heart rate was dangerously low, so he was sent to ICU for 3 days and then to High Care.
18 January 2016:
"Hi All, so we had another roller coaster ride last year…..
On the 22nd of December 2015 Logan was admitted at Sunninghill Hospital because of his uncontrolled seizures.
On the 24th of December 2015 they started a 16h EEG test that ended on the 25th of December 2015.
(Still Awaiting Results)
On the 26th of December he was transferred to Isolation after they picked up that he had the Rhino Virus, they also put him on Oxygen, and added a feeding tube as well as a central line for the drip and various tests. A week later he had a very big seizure where he held his breath and went blue, hes heart rate was between 48-55, which was very low, they took him to ICU where he spent a few days after they increased his medication for the seizures, and added additional medication as well.
For almost 2days Logan did not want to wake up, so they did a CT scan to see if there was pressure on the brain…no pressure on the brain, but the CT scan did show that hes Cranial is getting worse. He went back to High Care in the New Year, spent 2days there and then back to Isolation due to the Virus. Still on oxygen and feeding tube, we started feeding him or trying to feed him orally, which didn’t work, seems like Logan has lost the ability to eat and drink….
Took us another week to try and teach him to eat and drink orally again.
Logan was finally discharged on the 15th of January 2016.
We will be scheduling a surgery date for him to have a scope, Nissin Procedure as well as a Peg in the next few days.
From me, daddy and Luan, we would like to thank each and every one for their endless love and support!!!!
He was discharged in mid-January.
Due to all the seizures, Logan has lost his ability to drink fluids and was admitted to hospital in February to get a feeding tube.
1 February 2016
My SKOENE vir LOGAN
Here, U ken die skoene waarin ek loop, U weet van die klippe wat ek skop, die gate in my skoene, die merke op my skoene, die pad wat ek loop met hierdie skoene….
Geen Ouer loop, wil loop, of sal ooit loop in n ander se skoene…
Ek loop die pad in my EIE skoene….
Soms voel hierdie skoene te klein, dit druk my, die dorings steek regdeur my skoene….
Daar is uitdagings wat my siel en my hele geloofs basis bedreig.
Dit voel vir my of dit al so gaar geloop is, ek kan net sowel die skoene uit trek, en kaalvoet loop want die skoene beskerm my nie…
Here, hoekom kan ek nie ook perfekte, mooi, duur, skoon skoene dra soos al die ander nie?
Ek het vanoggend opgestaan, met n vrolike hart, en toe ek my skoene aantrek, was hulle splinternuut.
Here, U seen my met n nuwe paar skoene elke dag van my lewe, en waneer ek deur my moeilikste en diepste seer gaan, is U besig om my skoene weer op nuut te maak…
Dit is nie n maklike pad wat U vir my gegee het om te loop nie, dit voel soms of ek nooit weer die lig gaan sien nie, maar vanoggend het ek gekies om die nuwe skoene aan te trek wat U vir my gegee het om my pad weer verder te loop…
Dankie Here dat U soveel wonderwerke verrig in my lewe, dankie dat U soveel engele op my pad stuur om my te dra waneer my sole van my skoene deur geloop is.
Dankie Here dat U my skoene elke dag weer nuut maak!
Dankie Here dat U my n rede gee om aan te hou probeer!
Dankie Here dat U en die Engele saam met my in My SKOENE loop vir LOGAN!
At this point Logan will need intense therapy to try and develop what we can. Since he is disabled, he has to have various assistive equipment such as specially developed strollers, sitting/standing and positioning frames, etc.
7 March 2016
Let me Educate you!
A mother with a normal child and a mother of a special needs child is exactly the same. We are all mothers who gave birth to our miracle/s.
The challenges we face however are different. Every mother faces different challenges. Please do not feel sorry for me, instead admire me, like I admire you for caring, loving and disciplining your child, I care and teach my child. I don't feel sorry for you when your child throws tantrums in the shopping centre. I admire you for having the patients to put up with it, I admire you for trying to teach your child manners when they misbehave or say in appropriate words to older people. I admire you for teaching your child to walk and talk. So please admire me, as a mom of a special needs child for doing just as much for my child as you do for yours.
We all have to work pretty hard to give and get the best for our children whether they are disabled or normal.
You spend money on sports and education, we spend money on therapy and equipment. All the same, it comes down to every mother wanting and providing the best for their children
You get excited about the same things that we do. You cry about the same things we do.
So the lesson today.....
Please admire us, as we admire you!!!!
From the heart of a special needs mother
15 March 2016
23 April 2016
Dear Micro Supporters...
in the last week, Logan was admitted to hospital for Febrile convulsions, the quickest or shortest hospital stay ever....blessed i tell you, Logan got discharged on Tuesday when we got home he missed his nanny so much his smiles and chatting was nonstop😊...
When we got home, The Star Newspaper was waiting by our door....to meet our little angel, and do a short story....article in Todays paper 23-04-2016.
We were also blessed on Thursday having been afforded the opportunity to have a a live interview on Radio to tell people about Logan and other angels with Microcephaly as well as a little insight on the Micro Miracle Foundation and what we aiming to do this year.
Thank you from the bottom of our hearts for the support and love that you have shown towards Logan and his journey.
Charlene has been an angel in arranging all of the exposure, fundraising and donations. We send our love and Gods
Blessings to her and her family....
2 June 2016
All of the above has happened in the last 2-3 months, and definitely shows progress.
Logan is still getting his daily therapy and therapy sessions with his therapist weekly.
We are now waiting for an appointment with the Neurologist to re do the 24h EEG to determine whether we can decrease his medication or not. It was reported that Logan would need AFO’s (Supportive devises) for his feet, and splints for his hands.
Thank you so much for all the prayers and support.
Watch this space….
“Out of difficulties … Grow Miracles”
After the feeding tube surgery, Logan’s reflux got worse, and eventually we had no other option but to do a Nissen procedure which is (A Nissen Fundoplication, or Laparoscopic Nissen Fundoplication when performed via Laparoscopic surgery, is a surgical procedure to treat Gastroesophageal reflux disease (GERD) and Hiatalhernia)
Logan got extremely ill in ICU after this procedure, he got Septicaemia, and when discharged from hospital, he regressed…
Logan’s Seizures got more frequent and more dangerous; the little ability he had left like almost sitting, holding his head up for seconds and even standing with the assistance of a standing frame was lost.
Finally after a few months, we got his seizures controlled or so we thought…..
24 January 2017
Passed out mommy’s little angel! We have been blessed with our first Christmas at home with Logan, and what a blessing he has been to our lives!
We had a quick visit in hospital in December just before Christmas...with what we thought was seizures...obviously not according to the doctors its called dystonic jerks...
On the 27th of January 2017 Logan will be seizure free for 12 months. Thank you Lawrence Kuhn for our little boys mix that kept him going and without seizures for 12 months...
Gosh, thank you to all his therapists, Jen Brueton, Lara Berman, Laura Cramb & #horseworks and our angel nanny Nini😄
This year is going to be amazing!
Logan has been chatting, smiling, moving and giggling more than ever...so yes he is definitely improving 😀😀😀
Keep an eye out for some exciting new things coming...and brag posts about Logans Amazing Journey with Microcephaly
All of us
💛💛14 February 2017
Update on Logan:
Logan was admitted at Unitas Hospital for what we thought was seizures again..and severe relux... EEG showed no signs of seizures, neurologist calls its jerks...
We are doing a barium swallow tomorrow morning to see how severe his reflux is...depending on the results we might have to do the Nissen procedure.
Logan weighs 12kg now, Head circumference is now at 43cm and length at 95cm...he is still growing and head hasn't stopped growing, that is an absolute miracle given his diagnosis!!! Other than that...hes doing really well 😊😊😊
He started regular therapy again, occupational and physio, he also started the Keto diet with the assistance and close monitoring of his dietitian Jessica, that helped control his seizures for a while…
12 March 2017
Logan has been moved from ICU to paediatrics ward.
He's not coping well after the surgery, doctors are doing tests to see whats causing him to regress
At least i can stay with him now, and treasure every minute!!!
4 May 2017
Just a little update on Logan...
Logan has been getting uncontrollable seizures since being discharged from hospital in March, he has regressed, unfortunately he can no longer hold his head up or giggle like he use to. He also hasn't gotten therapy for a few months due to financial constraints ... Its not all bad news tho ... Logan and Luan has a strong bond and Logan has started showing signs of interest towards his brother, which is a huge milestone for us ...
Through all of this...our closest friends and family hasn't left our side once...and for that we just want to thank each one of you for your love and support😊😊😊😊
We have quite a few personal fund raisers and Foundation fund raisers to assist Logan and other angels facing the same difficulties...
Please support our son and our cause😀😀😀😀😀
14 May 2017
just a quick update...Logan has been discharged...seizures seem to be under control with the strong meds his on...we have also started his oils thank you Lawrence Kuhn for your quick response and very big heart!!!
Logan's chest is still quite bad so we are looking at getting a suction machine...
We have some very hard decisions to make that will have an effect on our financial situation as well as our family....
Thank you for all your prayers and support .... please don't stop praying ... God please open our eyes and our hearts and help us make the right decisions for our family!!!!
I got the opportunity of a life time, a doctor in India offering natural medication that might help Logan develop, I started doing research and spoke to the moms who has been to see this doctor, and who has tried the medication….Everyone one had great reviews on the doctor and amazing results from the medication.
This was an opportunity I couldn’t let go, DSTV and at that time my employer Ranjay Israni financially assisted and paid for the entire trip, which I will forever be thankful for…. God was my guardian angel on this trip, unfortunately Logan got ill at the time and was admitted to hospital at the time of my departure.
I went to India, met the Doctor, got the medication, also met with numerous other doctors for opinions on Logan’s MRI and test results, and all doctors said it was a miracle that Logan is still alive.
I video called Logan every day from India, and could see his little angel face which made the trip so much easier and definitely worth it.
When I returned I started the medication as soon as he was discharged, amazingly enough, we saw an immediate difference in his behavior and especially in his facial expressions, he which was such a pleasure and an absolute miracle to me and my family….
4 August 2017
Logan was finally discharged from hospital ... a new journey awaits us...
Logan is still getting multiple seizures, but hes been put on the Ketogenic diet to try and control it...hes not eating orally yet...for now he gets fed through the tube using the feedi g pump... he is also on ALOT of medication now to assist in trying to decrease the seizures as well...
We have been blessed with a sponsor for Logan's chair from Shonaquip by the Paige Projects Foundations, so we are extremely excited to get it...it will enable logan to be in an upright position...L
Day 1- G-Therapy has started...i will keep you posted on the progress and development...
We continued seeing a positive difference in Logan for about 2 weeks after starting the medication, until Logan started getting uncontrolled seizures again, and were admitted to hospital again….
7 August 2017
Day 4 - G-Therapy
Logan had a big seizure today...praying it doesn't get worse...
Ketones still on the low side..hence the seizures...but other than that ... smiling and was chatting sooo much tonight...i could've sworn he said "Ouma" ... what a competition it has created in the house now ... hes gonna say mommy ... noooo he's gonna say daddy .... uhm noooo his gonna say Nini "His Nanny"...gonna have to pull up my socks ... if this little man is gonna talk ... Mommy WILL be the first word .... dammit 😁😁😁
14 August 2017
Day 11 - G-Therapy
Logan is doing well :-)
We had a bit of a hectic day on Saturday... Logan was crying nonstop from 3am - 8am ... but from there ... took a long nap, and has been very friendly and happy ... still chatting a lot...
Mommy did some nice therapy with him on Saturday...and this man wants to crawl :-)
On Sunday i gave him his special foods orally...and oh my word, this little man is sooooo cute and such an actor... Every time i bring the spoon to his mouth he puts his teeth together and refuse to open his mouth to take a bite, but when i pretend to eat his food and then tell him to open, he opens .... so now we def. know he hears us...and understands us...
Logan is also alot more alert, soooooo flippen cute!!!
Extremely excited to start Logan’s Therapy again on a full time basis!!!
Will post some pictures and videos of our little champ a little later!!!!
BTW: Logan weighs a whopping 15kg at 2.5 years old, almost a meter tall and head is at 43.3cm
We were forced to stop the medication, and only then did I find out that the medication was sugar coated and was the reason for his increased epileptic fits, unfortunately then we had to make the decision to stop the medication, even though it showed us a positive change and difference in his development, it made the seizures worse….
We had to choose between having Logan increase his ability to move and develop, or Logan just breathing without having increased seizures that could cost his life….so we stopped the medication. Logan’s seizures decreased again, we then started full time therapy again, and enjoying his healthy life and breathing ability.
We started doing blood tests to see what could have caused his condition, unfortunately the results takes up to 3-6 months to come back. In the meantime, Logan went for his follow up with both his paediatric neurologists, where they had picked up that Logan is getting more seizures “we didn’t even realise this” after all these years of experience, we didn’t realise that he is getting more frequent seizures…
Both his doctors decided to consider doing the VNS (A VNS is a device used to treat seizures when seizure drugs are not effective and surgery is not possible. VNS consists of a pacemaker-like generator that is implanted in the chest wall and is programmed by the physician to stimulate the Vagus nerve in the neck)
Wow…. Logan is a massive 20kg heavy at almost 3 years old, healthy and eating most of his food orally with the help of our Angel care giver Nini. At night he will have his formula running via the feeding pump during the night, or just water running during the night, and during the day he will have 3 healthy big keto meals, orally, these meals where given by his dietitian, which I prepared fresh with a Bullet machine weekly.
I am almost finished with my Cranial Sacral Therapy qualification, which I started in 2016 because of Logan, I wanted to learn more about the brain and the nervous system so that I can understand what my baby was going through….
New beginnings, New challenges…..
Logan was doing well, no increase in seizures, health was good, he was picking up weight, and doing really well!
I took him to one of my Cranial classes for therapy, which he had, with one of our tutors…what a miracle, and amazing experience, Logan reacted very well to the therapy, he was awake, but tears rolling down his face, no crying, just tears….all of a sudden he says…WOW! And that’s it, therapy was done, and we got our first word in 3 years …. WOW ….
That evening I sat and talked to daddy about the word WOW …. and we both remembered that on our wedding day, the Priest was preaching about the word WOW ….. obviously you can see a connection of some sort, right? But nonetheless, this was an absolute miracle, and coming from a cranial sacral therapy session, this gave me new hope!!!!!!
19 March 2018
I’ve made an appointment with the Dietitian, and took both Logan and Luan for a check-up and new diets …. The first question the dietitian asked was … how is Logan's reflux doing, I obviously answered very well, he hasn’t been getting reflux, no signs of reflux ….
Dropped him off at home with Nini, and took Luan to work with me …. When we got home after work, our routine for some odd reason slightly changed where I put the boys to bed and did everything because Eugene went to bed early …. That night at approx. 10pm, the breathing monitor went crazy ….. we lost Logan tonight …. my worst fear …. cause of death …. aspiration in his sleep ……
Logan’s Journey with Microcephaly ended today…..
RIP my little angel child
04-02-2015 - 19-03-2018
In my experience, people who have never lost a child have the false impression that a child with a disability dying is somehow a loss that is “less” than when a parent loses a child from a car accident, murder, suicide, addiction, or accident in general. Our loss is no less and no more. We all have lost children. We all have to deal with the circumstances in different ways. Some people think it’s easier to lose a child living with disabilities because parents have to know that child may not live as long. Some people seem to think parents of kids with disabilities should get over the loss within a few months, and feel the old cliché of, “He is in a better place,” or “God needed another angel.” Our heads might already tell us this, but our hearts are broken and gaping. Just be there for us. Be there to listen. You can never understand, and I don’t want you to have to ever understand. I will never get over the loss. Not in days, months or years. It will always be a part of who I am. We will move on and the pain will change, but we will never get over the loss of not having our child in our arms. Walking past his bedroom and knowing I will never get to walk in there to give his morning hugs or night time kisses.
These misconceptions are so far from the brutal truth.
Our son, Logan, had a significant brain injury. He was not expected to live long. My life was devoted to him 24/7 365 days a year for 3 years to ensure his life was the best life he deserved. Imagine caring for your child every single minute of every single day, then after 3 years, that is stripped away. No, his death was not easier because he was sick. His death was no less traumatic than any other parent who has lost a child. In our society, many people see a child who is in a wheelchair and can’t speak and assume their lives are somehow less than that of a child without limitations.
Well it’s not....it is challenging yes, but no doubt full of blessings and miracles.
He was the breath i breathed on a daily, hourly basis, he was my routine ... he was my fight!!!!!! I wake up every hour of every night hoping you will be given back to me, ripping you from me without saying goodbye is something i will never forget, or get over, i know my pain is nothing compared to what you had to go through. I am so sorry my angel boy!!!!!
I miss you my little angel, i cry nonstop ... i want those seizures back so that i can control them ... i want those less abled abilities back so that i can get excited about your improvements...i want those hospital days back when i knew you were in great hands ... and ME time with you ..
I want to follow up on your MRI results and blood results...
I want the medication times back ... i want to switch the pump on again...i want to change your nappy again and push your legs up so you can poo ....
I want to get you the best ... colourful equipment you get...
I want to feel your giggle from the bottom up ....
I want to hold your soft skin and fat toes with the most kissable lips against me...when you breathe into my neck...
i want to hear your laughs at 4am in the mornings ...
I want to prepare your food on Sundays
I want to fall asleep with you in my arms again...
I want to ... I want to .... i want to!!!!
Oh God i miss you my baby boy!!!!!!!!!!
Letter To Logan
My Sweetest, Most Precious Little Boy
This has been the scariest and yet the most amazing experience for me and soon you will find clarity and your purpose.
Life for you will be a little different than it is for most. You were born special. Some days leave me feeling rewarded while others leave me down and feeling defeated no matter how hard I try. Every set back no matter how big or small breaks me down into million pieces.
Logan, my angel, you have and will continue to do Amazing things, you have a gift to light Up dark rooms and the world will challenge you to shine like the star you were born to be.
The world around you will sometimes feel or appear complicated and messy.
You may have predictions about your future and have expectations placed upon you but remember you are defined by none of that.
There are no limits to what you can achieve and accomplish – no one can determine your capabilities during your journey.
You will go through numerous procedures and you will have countless hours of therapy and even accumulate various types of assistive devices to help you along the way, but always know I will be right there, every step of the way to bring you comfort and see you through it all.
My little Logan you are the biggest brightest star that will always shine.
Your milestones are my miracles – your smiles my luxuries and your breath, my bread and milk.
My sweetest most precious little boy!!!