Monday, December 18, 2017

December 2017 Update...

I know the blog is LONG overdue for a decent update.

This update will not be the full update that is needed though.  I haven't written up a GOOD update in almost two years now I think.

It's been a rough year.  Well, year and a half.   About 18 months ago we learned that our landlord at the house would not be renewing our lease.  She claimed that she needed the house to live in, but she rented it out again.  It was what it was though.

We couldn't find a place to take all 9 of us (at the time.)  We looked at several places we could have made work for all of us, but as soon as anyone found out how many of us there was, it was no...   We have been on a VA Housing list for awhile.  So we ended up moving from the house to camping out at  my Mom's.  Wasn't the best, but we made it work.

We came up on the housing list and managed to get a place, moved in on September 8th, the day before Bubba turned the big 9.  (He turned 9 on 9-9) ... LOL ...

I love this place.  LOVE IT.  It would be better if it had a bigger dining room and kitchen.  But I absolutely love it.  We all love it.  It's perfect for the six of us.

Cal is talking about moving out and moving in with his fiancee ...   she's back and forth here, which we don't mind.  Love seeing our granddaughters.  And our daughter in law.

Anyway .....

Mini Updates.. 

We'll start with Noah.

Noah is almost 16 years old.  I'm not sure what all I have mentioned lately.  He was diagnosed with Glaucoma now, and Aspergers, ADD & severe Anxiety ...  his kidneys are also getting worse.  I think they are relatively stable, but he's starting to spill more and more protein in his urine. He still spills a lot of blood when he is sick, too.  We keep a pretty good eye on it.

Also, he has pretty much stopped growing.  He's 5 foot even, and I'm happy he even hit that.   For a kid who wasn't supposed to live at ALL...

Big changes this year, he's been homeschooling for awhile ... like, since 4th grade, and he decided this year that he wanted to go the highschool and see what they had to offer.  So we did the next school day ...He's been attending since the day before Halloween and loving it. He's mostly in the Life Skills room when he is learning skills to be independent....

He went from being so tiny and not supposed to live to almost 16 years old!

Now a smallish update on Nathan. 

He is such a silly guy and soooooooooooo smart.  He might be non-verbal (or non-understandable 90% of the time) but he tries REALLY hard.  

He doesn't have any big new diagnoses but his hearing has gotten worse, he still refuses the hearing aids because they are "too loud" ...  he also went through the VPI clinic and his VPI isn't as bad as was thought, but it's definitely there.   He has to get another sleep study done and then we'll revisit if he should do surgery.  He also needs to get into a speech therapy consistently (He gets ST at school but the ST he was in outside of school was 6 weeks of therapy and then it was someone else's turn and you got put on the bottom of the waiting list again....)

Of course both he and Noah have significant muscle issues.  Neither of them can walk very long without getting really tired.  Noah will push through it, but Nathan gets so tired out so quickly it's hard.  And he still isn't really gaining weight... 

I am worried about him getting put on continuous feeds.  But if that's what's needed, that's what we'll do.  He is still just getting feeds in his g-tube at night.  

He also gets sick and loses weight quickly. He got taken off his HGH because they removed the diagnosis of Russell Silver Syndrome, they don't think he has that anymore.  They are absolutely certain that he has some sort of genetic issue, but they just haven't found it yet.  

He's doing really good in school .. this year is remarkably different and I think it's because his best friend Rylee is in his class helping him out again.  He adores her.  He's also on anxiety meds and he's not freaking out in the morning anymore, which is AMAZING. 

The most important thing is that he has been hospital stay free for TWO AND A HALF YEARS!!!  That's unheard of with him!  It's AMAZING!!!!!!! 

From 3lbs 4oz at birth to 10 and a half years old! 

That's about it for now until I can really sit down and write up the notes from their doctor appointments... 

Tuesday, February 28, 2017

Hope. It's in our genes!

Today is February 28th - RARE DISEASE DAY ...

We don't need to just wait and share our stories that "one day a year" ... we should all be sharing our stories all the time, and that's what I really try to do with the boys and their stories. (If you are going to read this - PLEASE PLEASE read all the way to the end.)

When a mom (and dad) find out they're pregnant, never in a million years do you think that you are going to be one of "those" people who have a child with medical issues. You don't expect to have complication, or premature births, genetic tests, life changing news .... words that no parent should ever have to hear and that just changes your whole world. All of it.

I fought a long heartbreaking battle to have the four boys I gave birth to. I was a teenage parent - I got pregnant with Calahan, but I immediately suffered a miscarriage, only finding out several weeks later I was still pregnant and it had been twins. After Calahan was born I had four more miscarriages, and I didn't have a pregnancy that stuck until he was five years old. This was Noah, but it was very clear that the pregnancy was not going as it should be very early on. Through an amnio we discovered that Noah has a very very rare genetic disorder called Mosaic Trisomy 16. If it had been full trisomy, he wouldn't be here, however; I was told repeatedly that he would not live regardless. He was born weighing only 1lb 12.2 oz and was 13 3/4 inches long. He proved them wrong and he thrived. After Noah I had seven more miscarriages before getting pregnant with Nathan. I had gotten a divorce from Noah's biological donor and met Dennis. Surely odds wouldn't be that I'd end up with another medically rare child. But that's exactly what happened. Nathan's pregnancy mimicked Noah's in so many ways, but was also pretty different. The amnio came back "clean" and unable to detect any sort of genetic issues. Though we found out he had a 2-vessel cord and something called "Dandy Walker" ... Nathan was born weighing 3lbs 4oz and was 15 3/4 inches long. He was born with a cleft palate and various other things. Regardless... what are the odds of having two significantly rare medically challenged children with two different dads? (I had one miscarriage after Nathan before I got pregnant wtih Kaedyn, and then three more after. 16 miscarriages, four biological boys, and the boy we adopted <3 - and DB's daughter whom we hope will come into our lives-)
Both boys have a long list of medical issues.....

Medical Issues we have dealt with that may not be a big concern at the moment: severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart deceleration, bilirubin in amniotic fluid, Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious (fixed surgically at 1 year), Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias (fixed surgically at 6 months), C-DIFF bacterial infection from antibiotics and started to go into Kidney Failure, Broken Nose, Gastro issues (vomiting same time every day for years) .... He has had surgeries to repair his hypospadious, hernias, and to put in ear tubes, also dental surgery... and he has been put in the hospital/put under for countless tests.
Medical Issues we are currently dealing with: Mosaic Trisomy 16, Glomerulonephritis & Hematuria (both kidney issues), Hearing Loss (in his left ear, he has a hearing aid). Ocular Hypertension (high pressure in his eyes). Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Anxiety, ADD, Dyslexia & Dysgraphia. He is on the spectrum (ASD) in the "Aspergers" range.... oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone, tone issues from his hips to his toes & Supinated feet, Sensory Processing Disorder, environmental allergies, braces (for both his teeth and his feet!), skin growths/moles that are being "watched," he has ongoing Speech, Occupational, and Physical Therapies .... he homeschools due to having a poor immune system and catching everything he's around, missing more school than being there. Pre-Hypertension. Glaucoma.

Medical Issues that we have dealt with and that we are currently dealing with: He is 7 years old (2014) and 28-30 lbs (depending on the scale) and 3 foot 4 inches (103 cm/40.6 in)…..In Nathan’s short little life, he had been diagnosed with the following: 2 Vessel Umbilical Cord, Low Birth Weight, Hypospadious, Natural Circumcision, Hyperbilirubinemia, Soft Cleft Palate/High Palate, Aortic Septal Defect (healed itself), Feeding Issues, Torticollis, Webbing of the fingers, Hydrocephalus, Bifid Uvula, Dandy Walker Variant (Missing Vermis in his cerebellum), Polymicrogyria (another brain malformation, meaning many folds, DR says the front of his brain looks like a bunch of grapes on MRI), Flat Feet, Tone Issues, Undescended Testicles, Russell-Silver Syndrome (a type of Primordial Dwarfism/growth disorder), Human Growth Hormone Deficiency, Scoliosis, Failure to Thrive, Apraxia of Speech, Non-Verbal, Seizures (when sick), Mild Hearing Loss, Velopharyngeal Insufficiency (VPI), Migraines, Asthma, Allergies and Autism. Broken Nose (2013)

In 2016 Nathan's diagnosis of Russell Silver Syndrome was taken away. He is currently and ongoingly going through extensive chromosome and genetic testing in hopes to give us a solid diagnosis. We have no "umbrella" diagnosis now but his Genetics doc is certain there is some sort of chromosome abnormality.

Age 9: weight is 45-47 lbs & 3 ft. 9 inches.
Things get added to the list, sometimes they change...... but this is a fact... something you only understand if you become one of these parents who are in this special community of other parents who "get it" because they've been through it themselves...

These children who have to live their lives knowing absolutely nothing more than the hand they were dealt, this isn't a "normal" but it is THEIR normal because it is all they know........ THESE KIDS teach us more than we could ever teach them, they bring MORE JOY into our lives then all the heart ache and worry ... It is a blessing to know these kids, to be their parents, to watch them grow, to have the honor of living their lives with them. It is an ABSOLUTE amazing thing to witness the MIRACLES that my children are and have been. The amount of PRIDE I couldn't even begin to express because I have watched these boys tackle things that adults can't handle and to step forward with fright hidden behind bravery ....

I wouldn't change them for anything - I wouldn't change one hair on their head - BUT not wanting to change who they are doesn't mean that as a parent of a special needs child you can't wish that things were different for them too. I don't like seeing my kids in pain - all the time, I want to scream every time I have to talk my child into allowing someone to do something to them that they are terrified of or that I know will hurt them, I would rather choke on begging them to be brave and watching the pleading in their eyes as waves of pain envelopes them. If I could *fix* those things that cause them pain and threaten their lives without changing anything about who they are as a person - I WOULD IN A HEARTBEAT.

I don't think people realize just how hard it is on a family to have to watch your children (sibling, grandchild, nephew/niece, etc) go through things like this - to live with the constant fear and worry that we go through. Sometimes it's hard to sit there and think "must be nice" to have such a "normal" life and not have to plan out every "what if" scenario that might happen when you leave the house just so you can be prepared.. just in case.

I have been accused of doing things like abusing my kids - making them sick on purpose (munchausen by proxy) - having people call CPS on us because they feel as if - not living in our house/living our lives - they know that our children need to be taken away because we are somehow causing their medical issues. I've had friends turn on me, family ignore me, and people just stop "caring" ... People start to complain about my being "too negative" because they don't like HEARING or READING about the boys medical issues. They feel I should focus on the positive things in our lives, and trust me - when I say - WE DO. Here is the difference. Because of our kids medical issues, our lives literally REVOLVE around the medical issues going on with our boys (and our family in general.) We don't CHOOSE to be negative - we are just expressing our everyday lives. You don't like it ....... imagine LIVING IT. This is OUR LIFE! So don't shame us, have little compassion and have some understanding. Sometimes - though - we need to vent about our day, our fears, all these things that worry us and the trials and hard things we go through on a daily basis.

I'm not saying we don't enjoy our lives, because we do. Even though our lives revolve a lot around medical stuff, I will take every day with doctors over not having my kids. We couldn't love our kids anymore than we do. It doesn't make our fears any less real. But every day is a blessing with these kids - because unlike most parents, they don't live by the motto ......


We do....and actually have it be a reality. #theBoyWhoLIved and #SuperNathan

(Thanks for reading.)

Saturday, January 28, 2017

It's that time of year....

I am entering the time period that I do, every year, where it's getting closer to Noah's birthday and I experience some ... I don't know how to explain it other than to say PTSD, because that's basically what it is. And I reflect. It never fails, it is always around now.

I think any parent, especially mother, who has had a difficult pregnancy, birth and watching their child with medical issues struggle, having to basically force and offer up your child to experience pain for their better good, it's hard. It's really really hard to have to hand your child off to someone and put your child's life in someone else's hands, it's terrifying.

As a mom, I don't fit in a box. Noah has a very strong certain diagnosis and Nathan does not. Nathan - who struggles with medical issues a lot more than Noah - has no box, he no longer fits in a group, and we just float around knowing there is some chromosome issue but not knowing what it is because it has not been found yet. But I don't have a group of mom's I can go to - to give and/or lend support. It's scary.

This time of year I always think of Noah, and reflect on my pregnancy and his birth.... which always leads into Nathan's pregnancy and birth too.

My pregnancy with Noah was really stressful for me. I had a five year old Calahan (who turned 6 right before Noah was born) and struggled through five years of secondary infertility, and at that point I had a total of five miscarriages. I found out that I was pregnant with Noah and a moment in my life where I wanted to leave my ex husband. My marriage was over that summer, but I spent several more years trying to "make it work."

Very early on, we realized things were not "right" with the pregnancy. By 16 weeks things had escalated to the point where it was highly suggested that I have an amnio to find out for sure what was wrong. Because something WAS wrong.

The day before Halloween that year, I was sitting in my doctor's little exam room with my ex husband, my mom, and my five year old son. In that moment, my life would change forever. I had no idea just how much my life would change.

And then my beloved doctor said the words.. "Well, the baby doesn't have Down's Syndrome or Spinia Bifida ... but he has something called Mosaic Trisomy 16."

Everything else literally fell on deaf ears. It was like, there was a buzz in my ears, in my brain, drowning out all the words ... all I could think was, there is something wrong with my baby, there is something wrong and I don't care. I am going to love this baby no matter what.
And then he said "Oh and by the way, it's a boy!" and I heard that.

A few short days later we met with another doctor at the hospital where Noah would end up being born, two hours away from home. He met with us in a larger room where meetings would likely take place. He sat us down ... me, my ex husband, my mother and my five year old son ... and he said things like "no quality of life" ... and .. "mentally and physically delayed" ... and ... "stillborn" ... "no chance of life" ... "possible 24 to 48 hours of life" ... and then he said, "I highly suggest that you interrupt your pregnancy."

Eight words. I thought, I can't interrupt my pregnancy... I'm only 19 weeks pregnant, I can't have him now because if I do, then he'll ... die.... and I realized what he was saying in that second. I realized he was telling me to kill my baby. He was suggesting I abort my child. The child I spent five years trying to have, the one I fought for, loved, cared for, desperately wanted... he was suggesting I don't even give him a chance.

I said .... "that isn't an option." It wasn't.

This doctor turned and looked at my (then) husband and said "And how do you feel about it."
In the half of a second it took me to think - I thought, it doesn't matter what he thinks, it's not his body.... and he said "I agree with her."

And I thought "wow" .... maybe he wasn't all bad...

The rest of my pregnancy I was told he would die. If he didn't die before he was born, he would die shortly after birth. If THAT didn't happen, he would die with in the first 24 to 48 hours. And if by some MIRACLE he did come home, he would be so mentally and physically delayed it wouldn't be worth it.

That was the speech I was given. The words burned into my brain.

"It wouldn't be worth it......"

I would go shopping, and I would find myself in the baby section looking at tiny little baby boy clothes, little boy stuff, toys, everything ... I was looking and I would pick something up and think or say, "I'm gonna buy this" and then my heart would sink, and I'd say ... no, not yet. I would put it back. I knew emotionally if that doctor was right, I would go home and see stuff, and I couldn't. I couldn't go home and be reminded ... I couldn't go home and have to deal with all the baby stuff. I just couldn't do it. So I didn't buy anything. My friend gave me a changing table. My mom got a bassinet, and a car seat/stroller combo... that was all we had basically. Most of the stuff I did have I got at Goodwill or garage sales ... but I couldn't see buying anything new.. .and I didn't buy much. I did get a diaper bag, that was pretty much it.

It broke my heart! I wanted so badly to be excited and experience the pregnancy that I deserved. It wasn't that kind of pregnancy though. It was filled with questions that couldn't be answered, a sense of being numb - protecting myself - and sadness. I had hope, I always had hope that he would beat the odds. My heart screamed he had to be okay, but my head said ... it could go either way.

My OB - the one I loved - never say one negative word about the baby. He never made me feel like he was going to die, or have issues... we made a birth plan, took birthing classes (again) and when the instructor said "Statistics say that every one in four women end up having a c-section, look around, who do you think in this room is going to end up having a c-section...." I stupidly raised my hand and said something like, "with my luck, it'll be me."

I made my doctor promise me, PROMISE ME, that if he thought Noah was going to die, that he deliver him. I wanted one thing - just one thing.... I wanted to hold him just once, breathing .... I would take whatever time I was blessed with - but I just needed to hold him once with breath and life in him.

So at 33 weeks, I was having contractions, I developed Pre-Eclampsia, Noah was having heart declarations, and things weren't seeming well inside my womb. I had told my Mom not to worry that Monday after my doctors appointment. But then the very next day I had to call her from my doctors office (they let me call long distance) and I was crying hard.... I said "Mom, you can worry now." They gave me the first of three shots in the office - to help his lungs mature - before telling me to go straight to the hospital. Don't pass go, don't collect 200 dollars, just go to the hospital.

A few days later Doc said it was time to go get him born, and he had to send me off to the hospital two hours away that could handle a baby that had medical issues and handle a small baby. So after a few days in the hospital - I got transported in an ambulance in a snow storm, two hours from home. I was thinking he would be about 4 lbs.

He said I would have him the following day, 2-2-02 .. the most awesome birthday ever, and he would share his birthday with my Mom. He was going to be her birthday gift.

But I got to the hospital and they did their own tests, and their tests showed things that were not good. His smaller than normal placenta was failing, and they weren't sure he would survive to the following day. I got to the hospital around noon, and at 3:45 PM ... Noah Alexander was born into the world.
I have major PTSD about his birth. The operating room was silent. You could hear a pin drop silent. They were preforming an emergency c-section and the doctor would make comments. But then the anesthesiologist started saying "3:45" over and over again, so I said "What is 3:45?" and he looks at me... and says, "That's when your baby was born."

There had been no cry, no sound, no announcement of "It's A Boy!" They didn't say anything, I didn't see him, I had NO IDEA that my baby boy had even been born. THERE WAS NOTHING.

I started crying uncontrollably ... I was trying so hard not to sob ... they were still inside my belly. They had taken my baby to a room, on the side of the operating room, the door was closed and I could see several people around what I could only assume was my son...

My baby was outside of my body, because my body was failing him, and I just wanted to see him, touch him, hold him - one time - just once - before he died. They were taking that from me! They were not going to respect my wishes. I wanted my baby and I couldn't even see him.

They closed me up, and took me to recovery. I laid in the bed, numb, and there were people who would come in and say things like.... "He is so cute!" ... "He's so handsome!" ... "He's looking around wondering what everyone is doing, taking in everything." ... "He's doing well" ... they listed off some issues with him, and it seemed like forever before I was given a weight.... he was 1lb 12.2oz and 13 3/4 inches long.

He was born at 3:45pm ... my Mom, ex-husband, and his mom got to all see him around 7pm (because they weren't numb from the chest down. I didn't get to see him until 9pm that night. Six hours later.

He was so tiny. I couldn't believe how tiny his little hands were, his toes ... he had the cutest button nose, and a little bit of blonde hair... I could hold him in one hand... he wouldn't all fit in my hand, but he was so tiny. He was hooked up to this and that, he was on a ventilator, and at first he had an IV in his head. But he was so tiny.

And you know what? He didn't die. 40 hours after his birth, his breathing tube was removed because he was doing it all on his own. 1lb 11oz at that point in time and he was breathing 100% on his own with no assistance. My little boy was kick ass stubborn.... nursed and doctors would go by and say "Why is this baby off the vent?" ... it's not often you see a 1 to 2 pound baby without a breathing tube.
He was quickly labeled a "feeder grower" meaning the only reasons he was in the NICU was to prove he could eat and to grow and gain weight. There were a few bumps in our NICU stay, but he came home the day after his St. Patricks Day due date.

Life has been bumpy, he has been in and out of the hospital - not very often though - and countless tests. We had to live by the motto that "anything can happen at any time and we could lose him" ... but recently I was told that we could breath with that - Noah's good. He has his health issues, but he didn't feel we needed to live by that motto anymore.

I call him "The Boy Who Lived" ... he is my first little miracle and not many people can say that they have met or seen a miracle. There are a ton of miracles out there ... preemies that beat the odds, kids with crazy scary medical issues that beat the odd... and even the ones who lost their fights - doesn't make them any less a miracle.

Noah beat his odds. He is amazing and I am so blessed. Not a day goes by where I don't think how lucky I am to have my four amazing boys, to be able to love and guide our two boys with medical issues. Regardless of the death scares and everything else.... we are lucky to have these boys in our lives. They teach us so much more than we could ever teach them.

If you read this far, you deserve a gold star for the day.

Saturday, October 15, 2016

Or...... nooot too soon....

We're in the process of moving and I just haven't been able to update - but I will! I will I will I will.  There have been some good things :)

Saturday, August 13, 2016

There will be an Update Soon....

I have a lot to update on.  I just haven't been able to do so.  But I will soon.

Tuesday, April 12, 2016

Birth PTSD ....

A friend of mine posted an article on her facebook ...  I thought it should be shared.

Birth Grief And Trauma Are Not Selfish

This is me, I have PTSD stemming from Noah's birth....

I have PTSD from Noah's birth. I always feel crazy saying it - but it's true. Especially being told over and over that Noah had no chance for life. I ended up in the hospital thanks to Pre-Eclampsia and Noah having heart decelerations. I made it clear that if I got nothing else, I at least wanted to be given the chance to hold Noah while he was alive. I realize that may have caused a delay in "saving" him. He was born at 33 weeks, he was the size of a 24 week baby - only 1lb 12.2 oz. 13 3/4 inches long. However, there was a doctor overseeing and telling all the medical staff he worked with that the baby had no chance. Regardless, there are certain basic things you expect at the birth of your child. I didn't expect to have to be rushed in for an emergency c-section, though I wasn't surprised. I didn't expect for the room to be so very silent other than the doctor's orders as she cut me open. I certainly didn't expect to learn of my child being taken from my womb by the time being called out by the anesthesiologist who was sitting by my head. By the time I asked what "Three forty-five" was, and he told me "it's the time your baby was born" ... Noah had already been taken from my womb and rushed to a side room behind a closed door - where I couldn't see or hear or anything... there was no announcement of "It's a Boy!" not even a "Your baby is out and he's being taken by the NICU staff to check his vitals." I had no idea, there was no intention to tell me anything. He was born at 3:45 pm and I didn't see him until after 9pm. They weren't going to let me see him until my legs weren't numb anymore, and I could get up and into a wheelchair.

With Nathan - who was born via planned c-section, at the same hospital, to go into the same NICU (and funny enough he was put in the same spot in the NICU Noah had been) ... I made DB swear he wouldn't leave Nathan's side, that no matter what was going on with me, he would at least be there with Nathan because he shouldn't be alone and scared. And so he did. And when Nathan cried at his birth - I started crying. His birth wasn't what I wanted, but I had very little choice as to having a c-section thanks to the way that I was cut with Noah. There was no option of a VBAC or anything I had wanted for a birth. I didn't have to wait with Nathan until my legs weren't numb anymore, they took me back in the bed, wheeled me right into the NICU. (And he wasn't in an easy spot to take a bed) .. it was a much better birth, still scary... I knew I had another sick baby - but he was crying and he wasn't on a vent ... but Noah was sick (almost died that same week Nathan was born) and having to leave Noah in his hospital room while I went to have a baby certainly didn't aid to my calmness, infact I was a wreck ... but that's another story. 

Kaedyn's birth - however, was amazingly what I wanted for a c-section ... and the only one done by my OB that I trusted and loved, and the only one done in my home town.  We were laughing and joking while he was doing the c-section, Kaedyn cried and screamed - LOL - and peed everywhere ... we got to take pictures and everything... I was left alone with him for about a half hour or so, in the recovery room ... just him and me.  I undressed him and I counted all his fingers and toes...  I remember when they put him in my arms, he stopped crying.... and he looked at me.  He was amazing.  It was the perfect ending to my having kids.  

Aspergers & Noah


It's Autism Awareness Month - and let me tell you a little something about our lives on the Spectrum. We don't have just one kids on the Spectrum, we have two.
Noah was diagnosed with Aspergers just recently. He's always had it, I started questioning it when he was about three. There would be days where I just *knew* he had some form of Autism. Knew it - deep in my bones. Then the next day, I'd question that feeling. I ended up being on the fence about it for years. Then when I did all the paperwork for Nathan, it was pretty clean Noah was on the spectrum too. So I brought it up - to the Neurologist that sees both the boys, and he had me do some paperwork for him - and it was clear he was also on the Spectrum, more on the Aspergers side. Plus pretty severe anxiety, and ADD.
Noah has times when he's so badly got sensory overload, and it comes on quickly, and sometimes with very little stimuli ... He kinda sits and just covers his ears ... he gets super angry, argumentative, and sometimes it's hard to get him to move to a quieter place where he can calm down. Sometimes it's hard for him to pick up on things, sometimes things have to be explained to him over and over - sometimes in different ways - before it clicks. He also needs a ton of reassurance about some things.
But that's just Noah, it's how his mind works.  We LOVE him just the way he is.  

Autism and Nathan

It's Autism Awareness Month - and let me tell you a little something about our lives with Autism. Nathan is an amazing kid, we wouldn't trade him for the world, because even with the medical issues, and the Autism, and everything else he has going on - he is perfect to us, just the way he is. If we could make life a little easier for Nathan, we probably would, but not in a "I need to cure" him type of way. However, if cures could be found for some of his worrisome medical stuff, that would be AMAZING, but Autism isn't one of those things. We aren't out trying every single thing out there to try and "unlocking" Nathan or Noah (who has Aspergers.) But there are things that we miss. Like Nathan was a typical child (on the Autism front) up until 18 months, and then there was like a switch that got flipped, and I knew he was autistic. I just knew, I had been on the fence for years with Noah, but I just knew it about Nathan. So those moments when we get real eye contact, true smiles, and deep gut laughs, him being super excited about something are moments that we truly TRULY treasure.
At the zoo last Sunday, our last stop was play area. There are these little cup type things, that spin around and around, and Nathan automatically veered to that... and what happened just made my heart sour with happiness, just watching him. These are true smiles on his face, in the pictures. You know, because you can see his dimple!

Nathan came in my room and DB and I were watching TV, so I paused it and Nathan was hiding at the foot of our bed, and he'd jump up and "roar!" us (this is the first time he's done this in a long time) ... and I'd jump and scream like he scared us, and he'd laugh and laugh - and OMG that *real* laughter is the best sound in the world!! It's so rare that we hear it. So he kept doing it and (I nudged Daddy to get in on it) we'd keep jumping and pretending to be scared just to hear that sound.... it was AWESOME... truly ..

Tuesday, March 29, 2016

Spring Updates

Noah turned FOURTEEN years old on February 1st (2016).  It's crazy.  Sometimes when I sit there and think about it - this is the same baby that I was told wouldn't live - period.  Not only was I told that, had that fear they were right - but also - he started life at the weight of only 1lb 12oz!   It's CRAZY.  Here he is - 14!! 

As of today (March 29th) ...  Noah has some stuff going on.  He is 2 years into having those braces!  He has another year with them (at least).  But his teeth are looking AMAZING!  And that tooth that was growing horizontally, is finally starting to come down where they can pull it down with the orthodontics into place! (WHEW!)

Also, we are a little more worried about his kidneys right now.  When he saw the nephrologist in September (about 6 months ago) … they ran some labs on him.  He had a really low level of Vitamin D.  So they wanted him on a strict Vitamin D schedule – from what I was told (over the phone) from the clinic was that he needed 500-600 iu’s a day and 2500 iu’s once a week.  Now, I found out recently that wasn’t the case at all.  He is supposed to be on 2000 iu’s a day, and was supposed to do 10,000 iu’s once a week.  (Slaps forehead.)  So we are getting new labs drawn this week and we’re going to change things based on those results.  Also at his appointment, he had a high level of blood in his urine and was a +1 on the protein.  Which isn’t good.  So I did a dip on him the other morning, and he was maxed out on the blood scale and then at a +1 again (instead of a trace) … anything over a trace isn’t good.  (A trace isn't even good.)  ::: deep sigh :::  So this week they are going to do a urinalysis on him too.  I’m supposed to do a dip on him (at home) every day though – if it is consistently up there – he’ll have to go in sooner than later.  I’m a worried Momma.  I am, can’t deny it. 

Okay – after a recent haircut and when he came out of the shower, his brother noticed he had stretch marks on his back.  Normally this wouldn’t really be a big deal.  But for this little kid who has had trouble growing, period… once he hit puberty hard – he has been growing A LOT.  He has a lot of stretch marks.  He has them around his upper arms, arm pit, shoulder/chest area.  He has them on his hips, his butt, his legs a bit.   These we have known about.  They aren’t tiny stretch marks either… they are some serious stretch marks.   So his brother noticed that Noah now has three pretty deep stretch marks horizontally on his back.  (He got a haircut and showered after to get the hair off him, otherwise he usually does it when I’m in bed for the night.) Not up and down, but horizontally across his back.  This struck me as odd.  Never seen stretch marks like that.  (thinking, how many times can I say stretch marks in one paragraph?)  Then there is also the issue of the fact that he has some gynecomastia.  If you don’t know what that is, it’s where boys breast tissue develops more like a girl’s would during puberty.  Which I noticed and wondered about before, but it’s gotten worse.  And Noah isn’t overweight. 

So we took him in, figuring he needs to get in to see the endocrinologist (who he has seen before but she felt she didn’t need to see him anymore – so we’d need a new referral.)  So we took him in and the doc looked at him, checked out our concerns, and told us he was going to make the referral.  Great.  But he said something that shocked and upset me a bit.  He said “Noah’s not going to get much bigger.”  He was 108lbs and 5 foot even.   I gave him an odd look.   He said “Noah is in the end stages of puberty already.”  Noah started getting little arm pit hairs when he was about 7 years old.  I would bring this up to doctors (back in WI) and usually just got shrugged off.  Noah he’s 14 and almost done growing?  He hasn’t grown in height much in the last year I think.  On Nov. 18, 2015 he was 107lbs and 15 and a half of an inch (probably had shoes on – or was at a different clinic)... but I have that in my book that I use for important info.   So in four months he hasn’t really gained height or weight.  So yeah.  I’m a little irritated that my worries about his early puberty weren’t really heard.  It kinda makes me sad.  I’m 5’3, and he’s shorter than I am, it just makes me sad.  Nathan is going to be around that too – probably shorter.  Boo.  Just….  BOO!

Meanwhile – with Nathan – who is going to be 9 next month – CRAZY!  This VPI surgery is still on the table.  Since the doc wanted to wait a year to give him a chance to grow and gain weight (because he was worried with Nathan’s tiny airway, he wouldn’t survive the VPI surgery.  He literally had said “if we do the surgery, I’m afraid it’ll kill him.”  So last time we saw the DR – there was talk again about this surgery – because he needs it.  It’s the only chance he has to be able to talk.  He works so hard at talking and trying to communicate with us, but with the VPI – it won’t get better unless he has the surgery.  Now, if he has the surgery, it is not a guarantee that it’ll fix his speech. But he has a better chance.  So the next step we needed to take was Nathan having a sleep study and he did.  On January 2nd, and we got the results in early February. 

The results of Nathan's sleep study. To put it in perspective, Nathan is a very active sleeper. He spins around in his bed, his head could be at the normal spot, next thing you know he's done a one eighty and his head is where his feet were, he's constantly twisting and turning and all that all night long. During the sleep study, he did not move like normal. It took him a long time to fall asleep and he couldn't get comfortable because he was very aware of the wires and cords and everything - he was afraid to move and he falls asleep on his side, and didn't want to move on his side because of the wires and cords - so his movements were a lot less during the sleep study than "normal" .... So the results they got that night were as follows.

They want Apneas to be less than 1. Nathan's were around 8 to 9 per/hour. (which is funny, because that's what his Dad’s are at too)...
Nathan doesn't really STOP breathing, but his breathing gets very shallow. It's called Hypopnea. (Nathan’s Dad stops breathing)
His Apnea is classified as mild to moderate.
He also has Disruptive Sleep. She said he didn't wake up much - he slept 92% of the time after he fell asleep initially. He did have a lot of leg movement. She said they like it to be less than 5, and Nathan's isolated movements were around 10 and his repetitive movements (like a kick, kick, kick type thing) was at a 5.5.

So he definitely needs a CPAP machine. I know this isn't a big deal in the long run of issues, but it still sucks a lot for him. Compared to him almost dying last May, this is just a blip on the radar. 

We got his CPAP machine about a week ago.  They didn’t have a mask that fit him though.  He has a full face mask but it’s a little too big for him.  

  (Dad is super jealous of his machine too – Nathan has one that warms up the water and has a bunch of fun stuff.)

Just saying – things just don’t stop being added to Nathan’s pile of stuff to deal with. 

We’ve been making adjustments to the head gear for it to fit a little better.  For example, I put snaps in places – like – where it velcros to tighten on his head, because it can’t velcro properly where it’s supposed to because it’s longer then were it would normally be placed.  Also where it attaches to the mask, that is velcroed too and he would pull that apart in his sleep – so I added snaps to make it more secure.  Then today, I added something more to his gear, because he would slip the upper strap on his head and pull it down to pop his mask off, so I added material (with snaps) from the top strap that sits on the top of his head, to the one that sits at the bottom of his head.  Oye!  But we’re trying really hard to make it work.

So over the next few months we are going to be seeing all the specialists again.  So updates will come with all those fun appointments!  Joy to the World.... 

Thursday, August 13, 2015

Allergies, Allergies, Oh My ....


Here is Kaedyn doing his Asthma blowing test.  

Facebook Status: At Kaedyn's allergy appt....Kaedyn is allergic to every nut there is almost....Walnut 2, Cashew 3, Pistachio 3, Peanut 3, Hazelnut 3, Pecan 2, no reaction to Macadamia Nut, Brazil Nut, & Almond... The numbers go from 0 to 6 .. 6 being most severe... That's the blood test results.... He is still getting spot testing...

So they decided to test him for half strength Almond and Brazil Nut...   along with some food panels ...  (they were ONLY going to the two half strength nuts today - I guess they don't carry a oil for Macadamia Nuts.)  But I talked her into doing other stuff.  I didn't feel it was right to keep him off all his allergy meds for two tests.   Plus, it's not just this past week, it's all of the next week too cuz he has more tests on Tuesday.
Getting the tests done..... 
This was at 5 minutes and 10 minutes .... 

By the time they did the measuring - the Almond spot actually decreased.  They have it as a +1 but it was more like a +3.  

These results, also - are from negative to 4 being most severe.  

So far, this is everything that he's allergic to.  

Now - can someone explain to me how my child can be super allergic to Peanut Butter - like AS allergic to Peanut Butter as he is to Cashews and - he - doesn't - react ... not to peanut butter.  

Allergic Reactions

A person with nut or peanut allergies could have a mild reaction — or it could be more severe. An allergic reaction usually happens right away, but some people can have another reaction a few hours after they eat a nut or peanut.
Here are some of the problems an allergic reaction can cause:
  • Skin: Skin reactions are the most common type of food allergy reactions. They can take the form of itchy, red, bumpy rashes (hives); eczema; or redness and swelling around the mouth or face. A rash can happen when a nut or peanut comes in contact with the skin, even without eating it.
  • Gastrointestinal system: Symptoms can take the form of belly cramps, nausea, vomiting, or diarrhea.
  • Respiratory system: Symptoms can range from a runny or stuffy nose, itchy, watery eyes, and sneezing to the triggering of asthma with coughing and wheezing.
  • Cardiovascular system: A person may feel lightheaded or even faint.
In the most serious cases, a nut or peanut allergy can cause anaphylaxis (say: an-uh-fuh-LAK-sis). Anaphylaxis is a sudden, life-threatening allergic reaction. A person's blood pressure can drop, breathing tubes can narrow, and the tongue can swell.
People at risk for this kind of a reaction have to be very careful and need a plan for handling emergencies, when they might need to use special medicine to stop these symptoms from getting worse.
So I guess that Tree Nuts (Cashews) and Peanuts are very much separate allergies.  Kaedyn has anaphylaxis towards cashews.  Doesn't mean he will towards Peanuts - because he doesn't.  

But he does have a lot of the other reactions.  He gets itchy, he gets hives, he has eczema, stuffy nose, etc - but with all his allergies - it's going to be hard to pin point.  HOWEVER ....  I guess we know and we'll just have to keep an eye on him.  Without him reacting - with life threatening ways - we really don't need to become a peanut free home.