Noah & Nathan's RARE fight!
Pregnancy and the birth of your children is supposed to be a special - exciting time - filled with joy and happiness. But not for us. I have had to fight for all of my children. My first son - I miscarried his twin, thought I wasn't pregnant anymore, only to find out I was still (a month after the miscarriage) and that I had lost his twin. The pregnancy was difficult. My second son, I we were faced with the diagnosis of Mosaic Trisomy 16 and told he wouldn't live, period. I spent my whole pregnacy trying to hope for the best, but prepare for the worst. My 3rd pregnancy mimiced my second, only that baby was born with other medical issues. And my 4th son, well - for once I had a pretty good, normal, pregnancy.
I was given the gift of having two boys with really unique medical issues. They are gifts. I truly believe that. We faught through infertility, I have had 15 miscarriages since 1995. It has been a rough road but we were chosen to be blessed with our four boys. Two of which have rare and unique issues. Their stories are unique and a bit long. I have tried to condense them as much as possible.
I started this - almost a year ago - and it has sat idle and unfinished. I finally got it going June 2014. Even though it says it has been up and running for months, it hasn't.
NOAH'S STORY
In 2001 I found out I was pregnant with my second child. I was unbelievably excited since I had fought through secondary infertility. When I saw his heartbeat fluttering on the ultrasound, I knew I wasn't going to lose this baby like I had five pregnancies before him.
16 weeks pregnant, and we know that something isn't right. My doctor gives me the option of doing a level two ultrasound or going straight to doing an amnio for definite answers. After some great hesitation, I choose the amnio.
18 weeks pregnant, I am escorted into an exam room, one I have been in before. My doctor comes in.... and I hear from him news that no mother, father, grandparent, wants to hear.
He said.... "It's not Downs, and it's not Spinabifida.... but it is something called Mosaic Trisomy 16......"
He went on to explain how it happens, how it's not my fault... how there was nothing I could do to prevent it - it ... just... happened.
But I heard none of it. It all fell on deaf ears. I couldn't hear a word. I saw his mouth moving... I saw him talking and my loved ones who had come to support me listening, but... I didn't hear anything until he said....
"Oh by the way, it's a boy ...." and that's all that I could think about. My baby boy.
I had to go on to see a specialist in genetics. The meeting with him, I could have done without. He pulls us into a room, a conference room, and he tells me that ... there is no hope. My baby will die. He will have no quality of life. He will die before he is born or he will die shortly after birth. There is no hope. No hope.
When I said "that's not necessarily true, I have read stories of success."
He looked me in the eyes, and he hit home the fact, once again... there was no hope. He told me yet again, "He will die in utero, he will die shortly after birth, and if by some miracle he survives, he will have no quality of life." Then the following words came out of his mouth, "I highly recommend that you interrupt your pregnancy."
And I thought a moment. I thought... I'm 19 weeks pregnant, if you interrupt my pregnancy ... than he will die. And it dawned on me. He wasn't suggesting an early birth, he was outright telling me to get an abortion. To kill the baby that moved inside of me. The one who would wave on the ultrasounds, letting me know he was okay.
He already had a name. A strong name. One thing I could control, and I wanted to give him something that I felt would give him strength. Noah Alexander.
I looked at that doctor and I said, "I will not kill my baby. I will take whatever time that I'm given with him."
All I asked my regular doctor was that he got him out of me while he was still alive. If he thought that things were starting to go wrong, he would get him out so that I could hold him once while he was alive and breathing. That's all I wanted.
Just once, to hold him alive.
I couldn't bring myself to buy things. I was given some things, some things were bought for me, but I didn't prepare. I would go into the baby sections at stores, and I would pick up cute little things... I would want to buy them, and then force myself to put them back. I didn't want to have to go home and see everything meant for him, without him.
I had hope. I did. I prayed, begged... I wanted them to be wrong. But I had to be realistic too. I was being told there was no hope, so even if I believed everything would be okay, I had to accept there was a chance that it wouldn't be.
At 31-32 weeks ... things started to take a turn. Noah was starting to have heart deceleration, I was having contractions (enough that they threatened me with drugs to stop them)... and I had developed Pre-eclampsia.
I was put in the hospital. Another amnio was done after I was given three steroid shots to help develop Noah's lungs to see if the lungs were developed. The amnio fluid came out yellow. It was bili-ruben, the same thing that makes a child jaundice. The test also showed that his lungs were almost mature.
But at that point, with the contractions I was having, my protein levels, and Noah's heart declarations, I wasn't given a choice. I was transferred by ambulance to a hospital (2 hours away in a snow storm) with a level three NICU. Once I got there, around noon, I was told I probably would have the baby that day, not the following day like my doctor thought.
It was a whirlwind. Blood tests, ultrasound, and then confirmation that I was going to deliver not only that day, but right now. I was prepped quickly for surgery. Emergency C-section.
They saw, on the ultrasound, that the placenta was failing. It had always been small and wasn't doing it's job correctly, but now, it was dying.
Three hours and forty-five minutes after I got to that hospital, they took my son out of me and whisked him away without letting me see him. Without even telling me he was born.
3:45 pm he was born on February 1, 2002. It wasn't until after 9pm when I got to see him. And trust me when I say that it still traumatizes me. It seems silly now, but all I can think was that if things had been different, I wouldn't have gotten my wish to hold him alive.
Noah was born at 33 weeks, but he was the size of a 24 weeker - 1 lb 12.2oz. He was 13 3/4 inches long. He was a little heavier than two cans of soda, and a little longer than a ruler. He didn't feel that heavy, or seem that long. 
But even though the staff in the NICU, the doctors, the nurses, everyone, was told that Noah would die with in the first 24 hours after he was born.... at about 40 hours after his birth, he was taken off the ventilator, he was breathing on his own. Shortly after that, the doctors would come in - check on his weight and how he was doing.... he was labeled as a "feeder-grower" ... meaning they were just waiting for him to learn how to feed and gain some weight, and he could go home.
He was in the NICU for six and a half weeks. He came home the day after his due date.
And against all the odds he was given, he thrived! Slowly, but he thrived. Weight gain was slow, growth was slow, sometimes it took longer for him to hit his milestones. But he was the boy who lived. 
Today .. in 2014, he is 12 years old. He has had a harder life, countless doctors and appointments, numerous hospital stays, and he almost died in 2007. (This is part of Nathan's story too)
Noah's Medical Issues we are currently dealing with: Mosaic Trisomy 16, Glomerulonephritis & Hematuria (both chronic kidney issues resulting from the time he almost died), Hearing Loss (in his left ear, he has a hearing aid). Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Aspergers, ADD, Dyslexia & Dysgraphia. Tone issues & Supinated feet. (his list is a lot longer, but this is the basics right now). He also homeschools because he was starting to say he's "stupid" and getting a low self esteem from not being able to work at his grade level. He is suppose to be in 6th Grade but is working at a 2nd Grade level right now. The ONLY Prognosis they can give us for Noah is: Anything can go wrong at any time, so enjoy every day. Any organ can fail because we don't know, and there is no way of knowing, where the extra chromosomes are. There have been a few children who have been realitively healthy and then bam, they grow wings. Usually they find some organ failed or just got too tired from fighting all the years it had. Noah's placenta was 100% Trisomy 16, and had Noah been 100% Trisomy 16, he would have died, there has never been a full trisomy 16 child who has lived, infact, they usually die with in the first trimester and it's also the leading cause of miscarriage. So it's scary. We don't think about it, but it's there.
NATHAN'S STORY
Imagine ... having one baby who has medical needs... but what happens when your pregnant again and the pregnancy is mimicking the one before it? Baby isn't growing right, there are weird similarities. Amnio is done and HE is genetically perfect. Then what is wrong? What?
At the 20 week ultrasound I'm told I have fibroids, and that the baby has something called Dandy Walker. "The baby has a cyst in his brain, but don't worry about it......." click. We were also told he had a two vessel cord. Usually there are 3 vessels to an umbilical cord, two going into the baby taking in things the baby needs, and one coming out, removing waste. Nathan had one going in, one going out.
I look it up Dandy Walker and it scares me worse than Mosaic Trisomy 16, but I don't have anyone telling he's going to die or he'll have no quality of life.
Maybe because they didn't dare.
Noah turned 5 years old. And a few months later, in April, he got so sick. My gut told me to take him to the hospital where he was born (because those at the local hospital were brushing things off as a virus.) ... so I did, and I was told by the DR who admitted him that if I hadn't gotten him there when I did, he would have died with in the week.
Yes, he was THAT sick.
I had to leave my 5 year old baby in a hospital room and go down one floor to have another baby who was going to be admitted into the NICU.
Luckily Noah was better, and would be released from the hospital on major antibiotics in the care of my Mother because I was going to be in the hospital for a few days and at the hospital with the baby for a few weeks.
Nathan Patrick was born on April 19, 2007, at 36 weeks, he was born weighing 3lbs 4oz and was 15 3/4 inches long. He was put in the same spot Noah had been in - in the NICU. Other than at my 20 week ultrasound with Nathan, them finding out about the cyst in his brain (called Dandy Walker Variant) and that he had a two vessel cord, his pregnancy was rather unremarkable - besides the fact that he had severe IUGR and his pregnancy mimicked Noah minus the genetic issues since Nathan's amnio came back genetically healthy. I got steroid shots around 33 weeks, just incase, but he was born at 36 weeks. They didn't want him staying in any longer. 
He came out with a cry and we got to see him before he was whisked away. I told his Dad he better stay with him and he better not leave him. So he did.
Nathan was just in the NICU, much like Noah, to learn to feed, and to grow. But he did neither very well. They let us go home a few days before Nathan's due date (Mother's Day 2007) ... and we had to learn to insert and take out the feeding tube going from his nose to his belly (NG Tube). 
That first month that he was home I had to work really hard with him to try to get him to nipple (bottle) feed, but it didn't seem to work. I went to his local Ped and asked him if I could just take the NG Tube out and leave it out over a weekend and just try to get him to realize the only way he could eat was to bottle feed. He told me no. But the following Friday, as if Nathan knew what I wanted to do, he pulled out his NG Tube right after I changed it. So I put it back in, and with in an hour later, he pulled it out again. Now, getting the tube in was not something either of us enjoyed, so at that point, I said I was going to do things my way. We went that whole weekend just working on bottle feeding and you know what? I never put the NG tube in again.
But then they started to talk about a G-Tube (a tube in the belly going to the stomach) ... and I told them no. It got brought up here and there and there was something I realized reading stories of other kids who have his issues, and the G-Tube might help a little, but not remarkably. So I continued to tell them no. Nathan was gaining weight at a very very very slow and steady rate. He was gaining about an ounce a week from the time he came home to even now. Super active little kid, who was a picky eater due to his disorder and major sensory issues, but he was gaining. 
There was no talk of fixing his cleft palate in Wisconsin before we moved, but after we moved out here by Seattle, suddenly there was talk about it - especially after I explained how after one day eating spaghetti noodles he sneezed and had noodles coming out of his nose.
In May 2012 he had his cleft palate fixed. YAY!!! He has also had countless other surgeries for hernias, hypospadious repair, and various other things. He has seizures when he's sick. He still can't communicate like other children and so we have just recently gotten an Alternative Communication Device. It's not ours yet. Insurance has denied it. But we're on a rental basis ($75 a week) because he needs it.
Nathan's Medical Issues:
He is 7 years old and just under 30 lbs (depending on the scale) and 3 foot 4 inches thanks to daily injections of Human Growth Hormone. 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), Scoliosis, Failure to Thrive, Apraxia of Speech, Non-Verbal, Seizures (when sick), Mild Hearing Loss, Velopharyngeal Insufficiency, and Autism. Nathan's prognosis: Is completley unknown. We just take every day as it is, but we think it's pretty good. He just has to suffer through a lot.
Nathan has a lot going on and our months are filled with specialist appointments we have to travel a couple hours for. Noah has his, also.
So now that you have read Noah and Nathan's stories, let me tell you what we need help with.
There are a lot of medical expenses that don't get covered, that we have to pay out of pocket, including all the 2 hours trips. However, we are mainly asking for help with two things the kids need right now.
Noah needs braces. This isn't a cosmetic thing, it's a medical issue. He has teeth growing sideways (as in horizontal, not vertical like most teeth,) in his mouth. These teeth will become impacted and give him great pain, soon. He has teeth coming in behind other teeth and sideways in his mouth (as in the front of the tooth is up against another tooth and the side is where the front should be) ... and various other things going on. His mouth is narrow and small and cannot accommodate his adult teeth. In addition to that, he just recently had 17 baby teeth pulled because since he's been baby tooth losing age (you loose 20 baby teeth between 6 and 12) he has only lost 3 on his own. So he started having his adult teeth coming in where they were not suppose to. His dentist and I finally agreed that he just needed to get them all pulled. 
He has been on a soft food diet since June because his mouth is still sore and he had 12 teeth left in his mouth after he had the 17 removed. Some teeth are finally starting to come in now that there is some room, but it also means the other issues are more imminent.
Braces are a must and we need to do them soon. Insurance won't cover them, so we have to come up with over $5,000 for that. 
Nathan's Alternative Communication Device I have mentioned. Insurance won't cover that, either, and it's needed. He has about 100 words he can say at the age of 7 that we mostly understand. Most of our days are filled with frustration for both him and us. We have tried to teach him sign language and continue to - however it takes a few months for him to catch onto one sign and be able to do it. Most of our communication is in the form of YES or NO questions so he can shake or nod his head.
We tried to do the POD book (with the cards) .... 
But it was too much, and too bulky for him. He's still a super little guy and just couldn't seem to grasp it. So the only real alternative for him is to have the ACD which he picked up on right away.
We just got his ACD in the mail on a trial/rental basis. $75 a week. We are going for training today (October 17, 2013.) We are extremely excited. Nathan loves it already and insists on carrying it himself. 
This is also going to cost us over $5000 to buy outright for him.
Plus there are some other things he needs, like some clothes to help with his sensory issues, shoes that fit properly around his braces for his feet, and other Autism/Sensory items to help him be successful comfortable in life. Including some noise reduction headphones like he has at school. 
Because when you have three brothers, sometimes you just need to escape! Ha ha....
There is a conference in Illinois put on by the Magic Foundation that would benifit our whole family - with both Nathan and his Russell Silver Syndrome and Noah with his SGA (slow growth since pregnancy) ... but there is no way we could afford to go on our own. We have despriately watched it play out on Facebook and not only is there a wealth of knowledge to be learned there, there are other families with children with simular issues to connect with, and the leading DR on RSS comes from NY every year to see new families and help them with their children. And ... we... need... help.
We want to thank you for reading Noah and Nathan's stories, and thank you for your time. Even raising a little bit of awareness for Mosaic Trisomy 16, Russell Silver Syndrome and some of the other medical issues they have, is amazing.
They have a blog where I update about them (although I need to do an update!) ... you can find it here - at - My Unique Flowers
Every donation helps! Even if it's just what you pay for a cup of coffee. We appreciate every tiny bit!
Thank you!
.
Calahan (oldest), Noah, Kaedyn (youngest), and Nathan. You can see how small Nathan still is - even compared to his little brother.
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What specifically are we raising money for?
Noah's Braces: We have a payment plan set up right now and need to get them paid up. What we can't come up with - luckily my mom is covering, but I need to pay her back.
Nathan's Alternatice Communication Device: This finally got covered by insurance.
2015 Magic Foundation Conference: This will give us a chance to meet up with the leading DR in Russell Silver Syndrome so that she can meet Nathan and tell us what we can do to better help him. In addition it will allow us to meet other families, Go to lectures to learn how to better help Noah and Nathan - as the Magic Foundation isn't only for RSS kids but those who grow on a slow scale regardless. It will also allow the kids to meet other kids like them.
Tube Feeding Supplies: Not everything is covered by insurance and this ends up being a big cost for us.
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**Update** Nathan's Alternative Communication Device was FINALLY covered by insurance - however there are a ton of things not covered by insurance that he still needs. I have decreased our GOAL amount though.
We also managed to find an Orthodontist that would work with us because it was a medical issue more so than a cosmetic one. We still have to pay over $5000 and we REALLY REALLY need help! 
**June 2014** Nathan had surgery June 24th to get a feeding tube placed. Surgery went well but after surgery has been rough on him. We are currently (June 30) 6 days post surgery and he's still not walking much (if he had the choice he wouldn't) ... but his pain is under control, which is fantastic.
My HANDSOME boys May 2014
June 24, 2014 Nathan had surgery to place a Mic-key Button. Just to show - a little better - what we are up against with him.... this is him, unclothed - prior to his G-tube surgery. A lot of people (friends, family) have commented on how impactful this photo is and how you can tell he is just skin and bones. 
He was unhappy and anxious about surgery. He is 7 years old .... he is 29 lbs in these photos and 3'4". He is under (well under) the 0% curve on the growth chart.
Surgery went great. 
He also had some appointments July 2014. One of which was to do some tests (scope/x-ray) to see if he would need to have this palate lengthened. It was determined that he does need the surgery, his palate does not close all the way. However, his doctor (who also did his cleft palate repair and other ENT surgeries) ... said he is afraid if we do this surgery it will kill him. Those were his words. He said Nathan's airway is so small, that he doesn't want to risk it at this point in time and wants to revisit it in a year (next April).
This is not what I expecited to hear, and I was ... shocked by it. I am glad he was honest, and the surgery isn't worth his life, for sure. He may always have speech issues, he may always have speech issues even if he had the surgery. But ... that is a scary thought. So scary.
Nathan is eatting .... see, it's going through his mouth! (giving him yogurt to help with his Staph Infection August 2014, he doesn't like yogurt so we do it through his tube.)
August 2014
Update on Feeding Tube - Things are going REALLY well! In a month he has gained 2 lbs! That's UNHEARD of for him!
He also ended up getting a Staph/MRSA infection. This is really scary. We've started to aggressively treat him without admitting him to the hospital. We want it to clear up quickly.
We found out that not all his feeding tube supplies is are going to be covered by insurance. Insurance is only going to pay for a certain amount. That's it. Period.
Noah is doing good. I am anxious to start this school year with him, he .... is.... NOT. 
After his orthodontist appointment on August 6th 2014. We can already see changes! YAY!
He is over all healthy. Apparently though - I need to explain a few things about Noah. It seems that some of our family and friends don't seem to understand.
So Noah has Mosaic Trisomy 16. There are still only a few kids who even survive birth with this. Much like Trisomy 13 or Trisomy 18, most kids who have it - die during pregnancy, are born sleeping or pass away shortly after birth, or a few months after they are born. There are only (literally) under 10 kids that I know of who have made it to being a teenager. (there maybe more that I don't know of.) If Noah had full trisomy 16 -he wouldn't be alive. (There are ZERO known cases of full Trisomy 16 that have survived, they say that Trisomy 16 is the leading cause of miscarriage - I don't know who THEY are but - that's what I've read. I don't know how that is figured, but it's a fact in a lot of the research.) It is absolutely incompatible with life. My mom often wonders if that's why I have have so many miscarriages. (I have had 16 from 1996 to recently.)
Since he is not a full trisomy, he had a chance. I know you've read his story above how I was told he wouldn't live. And if he did by some MIRACLE live, he would be so mentally and physically delayed "it wouldn't be worth it" ... Okay. So we all know he was born alive, small, premature, but alive, and showed them all who's boss. For many years I thought he would be completely normal. He didn't meet his milestones on time. He sat at around 11 months (Christmas) for a few minutes, by himself. Steady at a year. Crawling around 16 months, though he didn't like that much. He wasn't standing by himself until 20 months - I have pictures of him standing on his own for his second Halloween, but not walking steady until closer to 2 years. These were all huge hurdles for us. Meanwhile we were dealing with a lot of eating issues, and always fighting against feeding tubes for him (too) - now I wish I had gotten him one. But I was going to fight the good fight and get him to do it. Anyway. We knew when I was pregnant that with something like this, that is so rare, there is no way to know how it would affect him in life. The trisomy, since it wasn't full - in all cells, could be sitting in any organ and any time that organ could get tired and just stop functioning correctly. This is what we've had to live with. And you can't go and do a biopsy of every organ just to find out. Even if we would be agreeable to it, doctors just won't. (Not that we'd be agreeable to it)
Noah is delayed, a lot more then I had ever expected and even more than I prepared myself for, and it seems that he gets worse every year. Academically he is at a 2nd/3rd grade level (starting this fall). He has the mentality of an 8 year old (even though he's 12.) Nathan is his best friend. He was Mr. Popular in school, everyone flocked to him, but he would say he had no friends. We took him out of public school because of his health - for one, he was missing more school because he would catch every sickness under the sun. Two because he started coming home saying he was stupid and that's something I did not want. He's not stupid, he's a super smart kid. Three - because there was a school shooting at his school and that was just the nail in the coffin so to speak.
So ... at birth we knew his right kidney was "enlarged" ....... but nothing much was ever followed up with it. Noah has things here and there that mess with his quality of life, but don't necessarily decrease his health. His hearing, his muscle issues, this and that and the other thing. He is delayed and every year it seems where he is on the delayed spectrum gets worse.
Fast forward to 2007 when he almost died.
When he got so sick, when I was pregnant with Nathan, and he was peeing out blood really bad ... he was hurting really bad on his right side. We thought this might be appendicitis and the physicians assistant at the local ER made us feel like we were nuts for thinking he could even have it because 5 year old little boys don't get it. (That's what the P.A. in the ER said, they don't get it). Meanwhile he's so sick, 104+ fevers, lethargic, etc - then we go to the hospital where he was born (and Nathan would be born) and they immediately started doing tests, got an IV in him, x-rays, ultrasounds, blood work, etc and so on...(And btw, when I told her what the P.A. said about the appendix was completely untrue.)
The DR told me another 24 hours and he would be so close to death she didn't know if there could be any saving him..... it was his kidneys that were failing, in failure. Almost to the point of dialysis. If they couldn't figure out what was causing it and treatment didn't work, they were going to get that going. Anyway ... these people see people in kidney failure all the time, and so many of them had to come look at Noah's urine because they had NEVER seen urine that color, one lady actually thought another nurse had put apricot preserves in a pee cup to mess with people. So Noah's kidney's managed to bounce back most of the way. However his right kidney is pretty sick still but healthy enough to keep functioning.
So... when he got the flu (Influenza A) in 2011 and we were almost living in the ER for 3 days ... and he was peeing out the apricot preserves again -- they were worried he was going into kidney failure again. They couldn't find out a reason he was so sick. Keeping food down was a hit or miss, the fever was bad, but the pee was what had us all worried.
With all this - we are pretty sure that his kidney's (or at least his right one) is effected by the MT16. He is one sickness away from being in complete failure - it's always possible he'll bounce back, but better possibility he won't. He ALWAYS has blood in his urine and when he's not feeling well I am constantly having him pee in something clear so I can check the color of it (so not kidding) ... and the second he's dropping protein in his urine (which he has a history of having a trace amounts in there right now) the Kidney Doc is going to want a biopsy on both kidneys, and then we have to figure out what to do from there. So this is one reason why we don't want Noah getting sick, especially REALLY sick. The longer he can keep his kidney's as healthy as possible the better.
Apparently - some people forget how quickly and badly Noah can get sick, and how hard I try to keep him healthy as long as possible.
** Nathan **
Nathan ended up in the hospital because he was running 104 temp and he was really sick. 
We were in the hospital for a week - and we didn't find out until after we were discharged from the hospital that he had a strep infection in his blood (all oral tests were negitive.) and that he likely had Scarlet Fever while he was in the hospital. His skin had gotten really red, along with many other things. Because the strep infection tests had come back negitive - they were looking at him maybe having Kawasaki Disease. Luckily, we finally figured it out (and by "we" I mean the doctors.)
November 2014 Update
Nathan has been non-stop sick since - pretty much - he got his G-Tube. He has only been to school 19 days so far this year. It's hard. We're suplimenting his school work at home, and are actually looking into homeschooling him the way we do Noah.
We know the holiday's are upon us and it's the season of giving. We hope that you will consider donating to our family. We are working so hard and we can't even do Christmas for the kids this year. Which is breaking our hearts.
Everything coming in financially - right now - goes to rent, bills, food and gas to get everywhere, and medical costs. We can't take the kids out for anything fun, or anything. So any help would be wonderful. We may use some donations for gifts for the kids. (If we get any donations.) Thanks for considering our family.
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MARCH 2016
There are several updates above. Including when Nathan was in the ICU during May (2015). This one was too long to post as an "update" ...
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 25th) ... 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 next 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. (Not that even a trace is good.) ::: deep sigh ::: So next 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. 
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. 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. (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. 
Okay – so back to Noah for a minute. 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 several 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!