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.....

NOAH'S 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.

NATHAN'S MEDICAL ISSUES: 
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 ......

ENJOY EVERY SINGLE DAY BECAUSE YOU NEVER KNOW WHEN IT WILL BE THE LAST .....

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

(Thanks for reading.)

Thanks for NOTHING Seattle....

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Today is Crainalfacial Clinic in Seattle ....... so off we go ....... with our cheeseburger!

We are driving along and Nathan announces "I gotta go potty!" So for the first time we had to pull over for a potty break for Nathan! Then he charms the gas station attendant out of a free "Frazil" which is like an Icee. .. this kid.

Over the bridge, by now - Nathan knows we're probably headed to the DR .....

Hello Seattle.....

Before his appointments today .....

We colored while all the different sets of DRs and people came in ....

Update on Today's Appointments: This is long....

First off.... Nathan's left tube is still blocked. First line of defense, we are doing drops for 2 weeks and if that doesn't clear his tube, he'll have to have another surgery to replace that tube. His ear drum is retracted. Not happy with this news.

Then came the speech pathologist. Air is still escaping his nose when he talks (she says - may not be exclusive to - but includes the F sound... http://www.nchn.org.au/cleft/speech_patterns/nasal_airflow_disorders.htm ) ... he also has Apraxia of Speech (http://www.asha.org/public/speech/disorders/childhoodapraxia/ ) and as if that weren't enough .... he also has: VPI - Velo-Pharyngeal Insufficiency -(http://www.lsuhscshreveport.edu/OtolaryngologyHeadandNeckSurgery/SpeechproblemduetoVPI.aspx ) ....
So what does this all mean? It means that they want to run some tests... a scope to look how his muscles move when he talks, it looks like his palate is not moving at all or very little when he talks, and also talking about getting a "moving x-ray" where they take a video x-ray while he talks. Never heard of it but that's what they said. This will most likely result in a surgery to expand his palate or do something to his palate to at least help him make contact with it and air not escape so much. We were actually told he may need that when he had his cleft palate repaired.

And then Nutrition came in.... and this is where I just want to cry. As if all of that wasn't ENOUGH .... Nathan is growing but he is still "Failure to Thrive" and they do worry about him getting proper nutrition. It's not that we are doing anything wrong and we've worked REALLY REALLY hard to avoid this. He'll still be able to orally eat, but it'll give us a chance to supplement his nutrition at night while he's sleeping. To make sure he's getting more calories - because he still burns off calories as fast as he eats them. I can agree with this move, I see how it'll be helpful, but I have to admit I feel a little bit defeated. At least now that he isn't a hit or miss eater, and he eats all day long and enjoys food - I'm more comfortable with the fact that at least I feel - or hope - he won't fall back into the lazy eating and just take what he gets in the tube. It still makes me sad because we fought so hard to avoid this... and maybe I have done him a great dis-service because i fought so hard against this. A lot of the RSS kids have G-Tubes ....

Sigh ..... so ..... that's 3 surgeries ..... three. May not end up with all of them, but two of them are pretty high possibilities ... ENT thinks the drops may work. Probably a 50/50 shot. Seriously, I'm just gonna go cry now...

Thanks for nothing Seattle......... you gave us nothing but bad news :(

The mountain on the way home makes it a little better

Traffic and Nathan don't mix well :(   Once we get to the big bridge, he starts to relax a little bit more....

"What's that?"
"Big Bridge"
"What's it mean?'
"Going home!"

And then when we get to the Dead Fleet .....

Me "what are those?"
Nate "big boats"
Me "what's that mean?"
Nate "almost home!"

Silly Boys and a few Appointments ....

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A couple of days ago, Nathan had went to physical therapy with Daddy and I and then we had to rush off to his therapy (Speech) in hopes of not being late.

(facebook status with instagram pics)

We are at PT with Daddy and Nate is being silly because he is a bit bored and upset we can't go eat at IHOP

And then he had looked over and seen what Daddy was doing and starting mimicking him... LOL...

Nathan was coping Daddy today while he (daddy) did physical therapy

While we were waiting for Daddy and being bored out of our minds........ well, Nathan was bored out of his mind, and I was anything BUT bored trying to keep him behaving ... or semi-behaving....  we were working on navigating his device.  He said "I want to eat snack" and "I want you to open it" ... and I need to go to the bathroom ... lol...  we were doing other things too but ...

And then he spontaneously asked for a snack using his device in the car on the way to his Speech ...  (and signed it "eat")

At therapy with Nathan, he loves the Puffer fish in their aquarium

Two days ago Nathan got fitted for his new SureSteps!

Today ....  we had appointments in Seattle ....   I got up to get ready and found this........

F*CK!!   That's right........ that's what I said.   Might have been more attached to that......  all that being upset about Leapfrog is out the window because all the money we invested in it - out the window.  I can't afford another one right now.  :'/

My sleeping beauties ....

Glad we left early. .. visibility sucks we are hydroplaning

Liam needed a bracelet too ...

In the waiting room ...

Both boys had hearing tests today.   Nathan went first (he's on the left, Noah is on the right) - you can see them on the tv's up on the wall....

Noah's left tube is blocked and his ear drum and we're just not sure what's going to happen.  We're not even going to use his left hearing aid right now - but both boys got to design their new ear molds today.

Nathan while he got his hearing test .... Kaedyn let him barrow his Leapfrog.

Noah getting the pink slime for his ear mold :)

Noah getting a new ear mold. Found out one of his heading aids isn't working at all anymore (he has hearing loss in only his left ear but we lost his heading aid - read he hid it - and got another set. ... then when I threatened him one day after he "lost" the second set, he brought me both)... so his newer hearing aid is still good and he gets a new ear piece because he can get a new one a year even though he had been really responsible with taking care of his.... he picked out red, orange, and black swirled

Roads were terrible! Visibility was nearly a few feet at times and we hydroplaned at several times. ... on the way home it took over 3 hours to get through Seattle and Tacoma. ... we had to stop and eat once we realized we weren't going to get far. ... crabby kids because they are hungry don't mix well with traffic. ... Nathan just kept crying he wanted to go home.  Had to stop for food... and even then he was M-E-L-T-I-N-G  D-O-W-N ..........

When we got home we were welcomed with this :)   There was a double rainbow ...  not sure if you can see it in the two smaller pictures....

RARE: Noah

My son Noah has Mosaic Trisomy 16 ..... He is extremely rare. While I was pregnant with him, I was given NO HOPE. None. But I still continued to have hope. I continued to love him and protect him in my womb. I was told he would be born still. If he wasn't, he would take his last breath sometime with in the first 24-48 hours of his life. He was born early, 1lb 12oz. Instead of taking his last breath in that time.... at around 40 hours old, he was breathing on his own - unassisted - and removed from the vent. My child, that I was told would not live, would not be compatible with life, would be so mentally and physically delayed, it wouldn't be "worth it" to continue with the pregnancy (that I flat out refused to listen to that advice).. thrived. That child I was told would not live, is 12 years old. He has developmental delays, medical issues, and hurdles to over come .... but don't tell me he doesn't have a quality of life! He is amazing, everyday he is amazing!

Here is a list I recently compiled with the things that Noah has dealt with and is dealing with that is of current concern....

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 decelerations, 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, 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, oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone, tone issues from his hips to his toes, C-DIFF bacterial infection from antibiotics and started to go into Kidney Failure, Broken Nose, Cyclic Vomiting Syndrome ....    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).  Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Dyslexia & Dysgraphia.  Tone issues & Supinated feet. (his list is a lot longer, but this is the basics right now), Sensory Processing Disorder, environmental allergies, braces, 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.

Home Again Home Again, Jiggity Jig - September Surgery - Tonsillectomy & Ear Tubes (again) ... Day 3

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Had a hard time waking him up this morning. He is a very tired bug. But, 10am and he's finally awake-ish. Asked him if he wanted to go home, he said no. Reminded him that Cal, and Noah, and Bubba all missed him and really want him to come home.... then I asked if he wanted to go home, again - and he said yes. So YAY for that. He just has to eat and drink this morning and then we can go. We might be here until after lunch though. But I think we're going home today. His little bit of a fever broke and when the docs came in this morning they said how they were a bit worried about him yesterday but they are more confident this morning hes doing okay and can go home. YAY!

GOING HOME!!!  YAY!!!!!!!!!   It's OFFICIAL .........

Went to get gas ....... this was my reaction!  HA ...  we were trying to delay getting on the road during lunch rush hour...  and so we stopped at McDonalds to get something for lunch too....

When we finally hit the road, Nathan was like this for a little bit .. and then.......

 He was like this.  

Auntie Cara and the kids got him this monkey :)   He got it when we got home....

Lots of soft cold foods for the next few days.....

September Surgery - Tonsillectomy & Ear Tubes (again) ... Day 2

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I didn't sleep well .......  to the point where I was up at sunrise.......

This is what Nathan's left ear looked like.  This is the one they had to anchor in place with cartilage ...

He was ABSOLUTELY miserable this morning.

He completely missed out on breakfast, and slept until almost noon!

And of course the only thing he wants to do is be on the tablet.   You can see a bit of blood on his pillow from his ear bleeding last night.

He got a gift from Grandma Phyllis ....

An Elmo (Giggling) Ball...   we threw it around a bit - he'd throw it at us, we'd throw it back...

To hear Elmo in action...... check out this video!

Nathan definitely started to perk up by 2pm ...   He has a chocolate pudding face and a banana phone!

I made him get up and walk some (notice the gift shop slippers!  Cuz I forgot all slippers, shoes and even SOCKS at home) ...

We went to hang out in the playroom a bit ... which we didn't even discover was THERE until the day we LEFT after his cleft palate surgery.   He didn't feel like going when he got his surgery in August (ya know, catheter and all that he didn't want to move) ... so we made sure to check it out finally - with him - instead of just going down to get stuff for him to play with.

This is the play area .......

 The first picture you see is the room you walk into - the room is L shaped ...  the cupboards there have a bunch of craft stuff - they hold "classes" or designated craft times twice a day in there.  There are some things that you can take back to the room but a couple of the cupboards are in room use only type stuff.   The second pic is me standing at the back of the other half of the room looking towards the area of the first picture, you can see the lady in the blue shirt and the kid in the red shirt in both pictures.  There is a dad there playing pool.  What you can't see is to my right of the second picture are tons of shelves with movies and music and books...  and behind me is a "Teen Room" for the older kids with game systems and stuff.   Then the other four photos are parts of the outside play area.  They have a basketball court and supply balls and trikes and bikes, and scooters.

By the doors to go outside there is this really sweet fountain ....  (you can see the balls in the background)

There is even a resident cat, and I forget his name but there is a sign on the door.  I thought I took a picture of it but I guess I didn't...

Back to Nathan......... He had this face a lot....

He wasn't sure what to do .. but then he found the U shaped one and it was a chair!  LOL....  After awhile we asked him if he wanted to go see what was outside.....

He had fun ......

He had to stop for gas.....

BIG Chess ...... we didn't play, we pretended ....

But then things started to take a turn, and he got tired and crabby - so we took a walk with him to get our dinner and then back to his room...

He wasn't doing so well.  He wasn't drinking and he was having a hard time eating ...  things were catching up with him.  And when asked, he said he didn't want to go home :(