Friday, March 15, 2019

Raising a toddler

So life with a 2 year old is so much fun with all the little things they do, say and are learning, but it can also be extremely challenging and frustrating.  Keira for the most part is always sweet, and loving and hugging,  but there are those moments when you ask, what just happened to my sweet little girl? 

I know that evening seems to be the time when things get the most challenging, and it's the time of day when we start to stress because it feels like there is so much to get done and try to get to bed at a reasonable hour.  I found myself getting frustrated, especially once 5pm hit and our 3 golden retrievers start bugging me to eat (and they eat all raw which takes a little more time, but they are so healthy). Then we have the horses to take care of...then feed the kiddo and finally maybe ourselves if we're lucky.   I'll be the first to admit that sometimes a glass of wine at 5pm takes the stress off and give the mentality that it will all get done and let's just sit and play with the baby, who it the most frustrated since she just want my attention, but I'm running around trying to get it all done. 

Either way, I'm always trying to figure out the best way to handle the toddler temper that can occur at any time of the day.  I read a great book called the The Happiest Toddler on the Block which has been helpful.   But I also wanted to share a great article I just came across.  I am alway intrigued with Native cultures and the way they live and I thought this is a very helpful way at handling anger in toddlers...

Tuesday, March 5, 2019

Life with Baby Keira update

The past 2 years of mommy life have been amazing and challenging at the same time. It started with my brother passing away from brain cancer 4 weeks after finding out I was pregnant.  Then Keira was born with a lot of health issues. We have been spending a lot of time at doctor offices and hospitals. She has had 4 surgeries so far.  So sending out newsletters, working and doing all the events I have done in the past has been on hold.  All I have wanted to do is spend time with my baby and keep her as happy... and I feel like I have accomplished that so far.  She is the happiest and sweetest thing.  She is amazing at how well she had tolerated everything she goes through and it does not seem to faze her at all.  It definitely affects me substantially more, but her happy loving spirit make it all not seem so bad. And now I am finally updating on what had been going on and how we have managed her issues, conventionally and alternatively.  I know deep down that She is why my life's path took me in the directions of doing what I do for a living.  If it wasn’t for my knowledge of alternative health and preventive protocols, I think this poor child would be in a completely different life situation in life.  

Considering my past pregnancies only ever lasted 7 weeks, Keira was a surprise pregnancy and she was born on her due date.  We had an easy natural water birth at St.Joe’sOverall Keira seemed ok when born, but there were some red flags..., she had what they called "dimples" down by the tail bone and she was missing a bone and toe on the right foot. The next morning her oxygen was a bit low so they took her back, put her on oxygen and did a chest x-ray to make sure there was not fluid in her lungs...protocol since she was a water birth.  Lungs were fine but they saw an area of her colon that took up her entire abdomen.  In trying to figure out what was causing the dilated area of colon, at 4 days old we were eventually transferred to University of Maryland Medical Center in Baltimore. Through numerous imaging and scans, finally an MRI revealed a tumor at the base of her spine called a sacrococcygeal teratoma. These tumors can cause irregular development of the colon, urinary track system, spine, legs, feet... so a lot was starting to make sense as far as the issues least at that point.  She was too small to remove the tumor yet and the immediate concern was the enlarged area of colon and concern of it rupturing.  They took x-rays before and after she would eat to see what it was doing and if it was getting smaller with time, but it was not.  So after 2 1/2  weeks in the NICU, they decided to do surgery on the colon.  It turned out that her colon had done a hairpin loop and had fused together.  It was causing a kink at the top and narrow at the bottom.  My surgeon showed me the pictures, she said she had never seen anything like it.  Keira ended up with a colostomy so they could let that stretched out area of colon try to heal, so they could figure out what was normal colon and what was not.  The other section seemed very narrow and they were not sure if it was just due to being below the kinked area and not getting used properly.  We finally went home at almost 4 weeks with a newborn and a colostomy.   

We were home but the laundry list of Dr appointments started.  Her tumor removal was scheduled for 3 months old.  In the mean time I also had to meet with a neurosurgeon.  Keira had a full body and brain MRI which is protocol when there are tumors located on the spine anywhere. Plus, the neurosurgeon was going to have to be present during the tumor removal since it was located very close to the meningeal sac, a bundle of nerves at the base of the spine.  If that got nicked it could cause spinal fluid to leak. 

In those 1st 3 months we also met with: Our pediatric surgeon, our Pediatrician, and Orthopedist, Genetics, Endocrinologist, Urologist, and an Ophthalmologist for the spots on her optic nerves in her eyes (which I am sure so many people have which are never noticed, but since they went over every inch of this child while in the NICU...).  

At 3 months we went in for the surgery to remove the tumor.  Fortunately, it was benign.  But after pathology examined it, there was question if it was all removed. So we had to wait another 3 months post-surgery before doing another MRI to determine if there was any tumor left...scar tissue from surgery they said will skew the MRI imaging.  However, 1 week after the surgery she got a really bad urinary track infection. She was so miserable and I notice her urine smelled strong.  Luckily I do urinalysis with my clients and I got a urine sample from her.  Sure enough she had a UTI, so I took her to the pediatrician which they confirmed the UTI. They figured it was due to being catheterized during surgery.   As soon as I discovered it, I started her in herbs safe for infants, so I gave her some of that in her bottle and I could tell she was feeling better quickly.  I also made some Reishi Mushroom tea and gave her some of that.  She was back to a happy baby quickly and her urine samples looked good.  I held off on the anti-biotic for a few days, but the white blood cell count in the urine was still showing up. So I put her on the anti-biotic to be on the safe side, but the white blood cell count never changed.  As soon as she came off the anti-biotic, the uti started coming back after 3 days.  I put her back on the herbs and then she was fine again.  I kept telling my pediatrician and surgeon about it.  They kept saying as long as she is symptom free, they were not concerned.  I kept trying to explain that if I took her off the herbs she would start to get the UTI back.  For the longest time no one got it.  So I just kept giving her the herbs since it was working and I didn’t want her to get a UTI...or even worse a kidney infection.  I rotated D-Mannos, Reishi Tea and Cornsilk tea. 

At 4months my pediatrician understood what I was doing with the uti prevention and recommended I go see the Urologist to rule out Kidney Reflux, where urine goes backwards up into the Kidneys.  I met with the Urologist and they sent us for a VCUG, where they inject dye into the bladder to see where the urine is going.  Turned out urine was going back up into the kidneys.  Kidney Reflux is when the valves that go from the kidneys into the bladder do not close properly allowing urine to go back up into the kidneys.  Some kids are born with it and outgrow it, others have to have surgery to fix the problem.  The protocol is to use a low dose anti-biotic to prevent infections until the problem resolves itself or surgery needs to be done. They usually wait a few years to see what happens with the reflux.  Kidney reflux is graded on a 1-5 scale, 1 being mild and 5 being severe.  Keira was a 1 on the right side and a 3 on the left.  The urologist recommended a procedure called Deflux where they inject a gel into the valve area to prevent reflux.  Its is only 70% effective and the more I looked into it I was finding that many hospitals such as Nationwide Childrens hospital, Hopkins and places like that have stopped doing Deflux, and in the wrong situation, it could cause more problems.  So glad I wasn’t feeling it for that approach. I  consulted with 2 other Urologists and decided to switch Urologists.  I also didn’t end up doing the anti-biotic yet because the herbs I was using were working to keep her infection free, but I had the anit-biotics on hand. I was able to do this until she was 16 months old.  After the colostomy reversal at 15 month I couldn’t keep the infections under control. 

Finally at 6 months we had another MRI and sure enough there was still 1/3 of the tumor remaining.  My pediatric surgeon wanted to go back in for the remaining piece.  We ended up in a slightly heated debate about that for a while.  If it was benign, why put her through all that right now.  She kept saying it had a 15% chance of turning malignant, but from what we read, researched and consulted with other surgeons, her tumor had less that ¼% of ever turning malignant and 5% chance of growing back.  But either way everyone's mindset was to remove the rest of the tumor.  My surgeon said we didn’t need to rush into it, but she wouldn’t reverse the colostomy until the tumor was removed due to the location of the tumor surgery site being at the base of the tail bone and poop in diapers often prevents the site from healing or ends up infected.  Sometimes kids end up with a colostomy so that the tumor removal site can heal.   

We fought going back in for surgery for the rest of the tumor until she was 11 months.  We wanted her to get bigger and enjoy being a baby, she had already had 2 surgeries and was still very small.  Plus they said the surgery was going to be tricky because they believed the remaining piece of tumor looked just like tissue which is why they missed it the first time.  Usually these tumors had defined margins, but hers had grown into the surrounding tissue.  Teratomas are made up of differ body organs, tissues, hair, etc.  SO they would have to take pieces of tissue and send it to pathology to see if it was tissue of tumor, and were not sure if they would find it or even be able to remove it all, which is why we were reluctant to let them go back in after it.  And sure enough It was a long stressful 5 hour surgery. After 3 hours they updated us that they were still looking.  I don’t know if I have ever been so mad.  There was also again the concern of the nerves at the base of the spine with these surgeries and she was still tiny for 11 months.  My conversations with my surgeon were of the nerves, putting her though the surgery and not finding or getting the rest of the tumor...the risks didn’t make sense to me.  She brought in her partner to assist and eventually did find the rest of it.  It was a bunch of cysts behind the tailbone.  They removed some, the rest burst and disintegrated as they tried to remove it.  To this day I still don’t know that the surgery was necessary, it sounded like the tumor was dissolving. 

Anyway that was over.  We had some issues with the healing process because Keira at 11 months was determined to walk, and having an incision at the right at the spot where she would fall on her butt was not ideal.  Her body was also rejecting some of the internal stitches which didn’t help.  SO instead of 2-3 weeks, she was finally healed up 10 weeks later.  We then began planning for the colostomy reversal. However in the mean time she had been walking for almost 2 months.  She was now 13 months and was dragging her right foot some when walking.  I took her back to the orthopedist to check in.  He thought I was being a little ridiculous for coming back so soon...he wanted me to wait until she had been walking 6 months, but to me something seemed off about the way she walked.  So he took x-rays of her legs to see if they were the same length.  To his surprise, he saw the extremely large wedge type vertebrae of L5 in her lower back.  L5 looks like a triangle with 1 spines process on one side and 2 on the other.  This is what was causing her waking to be off.  Turned out this is noted on her MRI she had done when she was 2 days old, but she was so tiny it was noted as lower lumbar spinal anomalies.  He sent me to an orthopedic spine surgeon to consult.  Now I'm terrified she was going to need spine surgery.  But to my surprise, she said since did not want to touch it and we would just follow her progress.  Since she is developing so well and it doesn’t seem to bother her, we are leaving it alone.  She may grow and adapt fine with it, or we will know if it becomes a problem.  That was a relief to know she was not going to need another surgery, at least not at this point.  And her walking now at 2yrs is straight and no more hitch🙂  

Finally last April 2018, at 15 months old, Keira had the colostomy reversed.   She did great.  They did end up having to remove part of the colon. The part that had been enlarged was the normal colon and the other part was narrow and abnormal, but they said she had a longer colon than usual, so it's probably the right length now.  The recovery in the hospital was not fun for the first few days.  The had to feed her through IV and she had tubs going through her nose into her stomach to remove the gastric fluids while the colon was healing.  So I couldn’t really pick her up for a few days and that’s all she wanted me to do. I was practically laying in the hospital crib bed with her.  Side note, she has never gotten back in her back since that surgery, to her it was like a prison...not that we used the crib much anyway. 

Overall she recovered well and we got an early discharge since she tolerated liquids and eventually solids well and everything seemed to be functioning fine with the reversal.  Again we ended up with some healing issues.  After a week she started abscessing at the internal layer of stiches where they closed her up where the colostomy was.  Eventually they had to open up the incision and drain it, and then pack it to let it heal from the inside out.  However it healed over with granular tissue so I  had to cauterize it every day and thankfully it did heal so that they didn't have to go remove the tissue and try to sew it back up again. I was at the hospital 2x/week for almost 10 weeks checking in with the surgeon an making sure we were on the right track.  The cauterizing worked and 11 weeks later she was healed up!  The whole time this child was such a good sport about all of this, my surgeon commented on it so many times that she couldn't believe how good Keira was being:)

 Yey, that was over and we were thinking we would be getting a break finally, unfortunately the least expected and the most complicated issue arose.  It wasn’t until the colostomy reversal in April at 15 months old that she started getting chronic UTI’s…. once she was pooping in a diaper.  I had been able to keep her her off anti-biotics up until this point.  But I couldn’t keep her infection free and we finally started the low dose daily antibiotics Memorial Day weekend.  But she started getting UTI’s even while on anti-biotics.  This rose concern and our urologist ordered another VCUG to re-evaluate the reflux,which was done this past October.  The results were that her reflux has gotten worse, its now a grade 4 out of 5 on both sides.  My Urologist said there is always a chance of nerve damage to the bladder when removing the type of tumor Keira had, due to the tumors’ location on the spine.  And Keira had to have that to have that surgery done twice and each time she had a tumor removal surgery, it resulted in chronic UTI’s that were getting worse. But there is no way of knowing for sure if that was the cause, or if this was going to be the case.  When the reflux is not improving as the child gets older, the protocol is to surgically repair the ureters that go from the bladder to the kidneys.  But before doing that we had to do a bladder pressure test to see if she had a high-pressure bladder which is often the case if reflux gets worse.  If there is a high-pressure bladder the surgery will most likely not be effective since pressure is forcing the urine back up regardless. However, to their surprise, she did does not have a high-pressure bladder.  They ordered another kidney and bladder ultrasound, they were worried about some left kidney damage since the it was larger and has had a higher grade reflux, but her kidneys still looked good and healthy. This was assumed to be due to the fact I was able to catch the UTI’s before the infections would get to the kidneys.  Since she has been 3 months old I have been checking her urine with the dipsticks that I use for the urinalysis I do with my clients...I am so grateful that had been part of my practice for so came in handy with my own child.   

Now the question was if her bladder is eliminating properly, which would be the neurological piece that she either had already, or was a result of tumor removal surgeries.  We will never know, but her kidney ultra sounds at 2 days old and 5 months old all showed the enlarged left kidney.  The VCUG, bladder pressure tests and ultrasound done at 22 months old,  all showed urine still remaining in her bladder after voiding.  So as of January, 3rd, 2019, I had to start catheterizing her 4 times a day...which she has again been a great sport about and it doesn't seem like a big deal to do.  I almost had her potty trained a few times.  Surgeries, anti-biotics, and urinary tract infections make it a bit tough, but she has the concept since about 11 months.  Our Urologist said that even if she does not have complete neurological function of the bladder, she can still learn to empty it consciously.  I love this guy, he even said to get her into yoga as she gets older, since he had seen people control their body with their minds.  Luckily we have already started yoga due to her spine.  I also started her on some homeopathic remedies, and MonoLaurin which is just coconut oil extract, to help prevent UTI’s and in really seems to be helping.  

This is where we currently are with Keira, who remains happy and overall healthy considering all the stuff she is going through.  No one ever has a clue when they see her out.  We go to the rock climbing gym and she is this tiny thing, still too small for the smallest toddler harness, who is trying to climb out of our reach.  Loves to “go ride” on the horses and sleep with a pile of toy horses:) 

For someone who has been living a more alternative lifestyle most of my life, it has been an experience spending this much time in the conventional world.  I must say I love all the Dr’s I am seeing at Univ MD.  I have used Hopkin’s for a few second opinions would not leave MD unless I absolutely had to.  Nationwide Children Hospital had been involved with her colon issues at birth and we are also consulting with a urologist at Columbia University.  But our Urologist at MD has been fantastic My Pediatric surgeon, she has been on top of everything going on with Keira and great at coordinating with the other doctors when more testing and imaging is done so we get it all done at once since we are dealing with different departments needed different tests and images.  And my Pediatrician, I would be lost without him… he too has been amazing, reaching out to his other contacts for opinions on what to do with some of Keira’s issues. Emergency medicine has always been something I have appreciated, and even more so now. 

Saturday, September 16, 2017

Keira Keeps getting bigger:)

Tripping Over the Truth Cancer Conference

This event was triggered from my Brother's battle with Brain Cancer.  As a result we have gathered 40 speaker from around the world.  Oncologists, Scientists, Researchers, Doctors and Nutritionists, all speaking on treating cancer with minimal negative effects on the patient, with great results.  This is information that the general public and most health professionals are not aware of.    Some of this information and these treatments have been around for decades with scientific evidence and years of research to back the amazing results.  Why is it not know today...there was not enough financial gain to keep it in practice. But these treatments are making a comeback as the current conventional model is failing people over and over again, and more often than not.  Please don't miss this amazing event that may never happen again, or we may end up doing it semi-annually.  It will all depend on the general publics demand to know that they have a say in how their cancer and health is treated.

Sunday, February 26, 2017

Keira Alexandra

Keira Alexandra was born on Jan 18th, 2017.  She was 6.8 lbs.  Overall healthy, but had an issue with her colon that required surgery.  She breezed through that surgery like a champ. We have 2 more surgeries to go.  One at the end of March and another about 2 months after.
Over all she is a healthy happy baby:)

Thursday, January 12, 2017

Maternity Leave

Hello:)  I keep getting questions as to my work plan once the baby arrives.  It is any day now, so check back periodically to see what is going on.

1st, once the baby arrives I will probably take about 2 weeks from phone and email.  I will check periodically though and respond when I can. 

2nd, for the remaining 6 weeks I will be going into the office about 1x/week to ship out product orders.  So if you want to place a product order, please give me at least a weeks notice so that I, or one of my temp helps, can the order filled and also make sure it's in stock.

I will start seeing clients again after about 8 weeks.  So feel free to contact me to schedule starting mid to late March.

Hope everyone has a great winter!