Monday, May 12, 2014

April Showers bring May Flowers

Well Jax its mid-May already.  I can't believe that spring is flying by!  We've had so many adventures over the last 6 weeks since I last wrote.

Lets start with our BIG blessings!
First, the members of Daddy's Volunteer Firehouse got together and purchased a ZipZac I wheelchair for you.  It is incredible (almost as incredible as them!).  You were so great on it right away.  You figured out how to go forward and backward within 15 mins.  Last week you discovered how to climb into it all by yourself.  We are so proud and know it will help you preserve your precious energy as well as help you zip around the house as any almost 2 year old should. 

Then a few weeks later, we took a trip to DISNEY!  It was a total surprise for you and your siblings.  As you know, momma's daddy passed away in September of this year.  Before he passed, he told us that he wanted to send us on a vacation as a family.  Pop knew that we needed it. I didn't realize how much he was right.  (But that's just like Pop, always having to prove to momma that he was right
 ;-O I guess that's where you and I get it from!)  I know he was blessed watching us from heaven. You had a great time.  You really enjoyed the pool and watching the shows.

Now we have this benefit for you coming up this weekend.  I can't believe all the people working so hard to bring it to fruition.  It's amazing and its all for you!  Its going to be so great to see all our friends.

Now onto the other blessings & prayer requests

We've added several new doctors to your team.  3 specifically - an endocrinologist (this one is going to commit to your case), a metabolic genetic specialist (who has so many letters after her name, you could spell several scrabble words) & a cardiologist.  The management of your team is becoming more difficult because there are sooo many specialties involved.  You currently see - a diagnostician (she manages EVERYONE), a surgeon, a nutritionist, TWO GI drs, allergy, pulmonology,  ENT, endocrinologist, TWO neurologists, neuro-muscular geneticist, metabolic geneticist, retinal eye specialist AND cardiologist. That's around 15 doctors that we have to see on average every 3 months (some more, some less).  I'm sure I'm forgetting some.  Dr. Hogan is pretty amazing at keeping them all in line though.  She doesn't let anyone try anything without putting it past her first.  
Speaking of drs and visits......we got that long awaited genetic test back.  Well.....Nothing, nada, zip, zero, zilch.  Yep all that blood.  But we knew that was a huge possibility.  Only 1 in 3 people receive information. This whole gene sequencing test is SOOOO new.  The doctors aren't even sure how to properly process the data.  They (CHOP drs) requested your ENTIRE 6000 gene sequence back and are going to re-read it. Your doctors didn't like the way Baylor presented the again we wait.  On the upside though, the information is valid for 10 years and any new finds/discoveries will be put up against your data, so the answer may still be out there.  So apparently this is a lesson in patience.  But they did add our entire family to 2 research studies!  Fun times....we're all lab rats! haha  Oh and now (finally) ALL the doctors think this is genetic/metabolic. So being as that they only know how to read 25% of the genes, hopefully science will quickly move along so they can figure out how to read the other 75%. ;-P

Since we are on the topic of doctors not knowing things.... I would really like them to figure out FPIES! You've had several FPIES reactions this month.  One was to the TAIL of a GOLDFISH CRACKER. Seriously?!?!  I'm a pretty clean momma, but there are 4 of you and food does manage to get into places it shouldn't.  But I would appreciate it if you weren't so "typical" and didn't try to eat crumbs on the floor. OK?  Thanks!  You also managed to grab a peanut butter granola bar out of Callie's backpack. You just about gave momma a heart attack!  When you have an FPIES reaction, you throw up, retch, have bloody stools and get dehydrated.  Several times you've become lethargic.  Usually kids have to be rushed to the hospital with FPIES, but because momma is a walking hospital, (J/K, but its what I feel like sometimes) you usually get to stay home.  Honestly its because you are fed via g-tube and I can run hydration & sugar through your gtube.  So now we've established that you are allergic to apples, pears, chocolate, fish, wheat, soy, milk, peas, green beans, blueberries, corn & carrots.  You CAN have bananas, mangos, coconut & grapes.  I'm thinking we move to the tropics!   I just want to be able to feed you.  Even at 2,500 calories a day, you are still so hungry!  I wish I knew what to give you quell your appetite.  Its one of the hardest things in this journey. You will eat until you make your belly huge.  You will have to be vented and will retch, then 15 mins later ask for more Elecare pudding, formula and snacks.  The ironic thing is that all this food doesn't make you grow.  It doesn't make you go the bathroom more than 1x every 8-10 days.  It leaves you in pain, and completely unsatisfied.  Some of the doctors were pleased about your 6 ounce weight gain this month.  (I was ecstatic - daddy was more in line with the drs).  We just pray it sticks around and you grow! 

Photo: First bike ride!Lets go back to the blessings.  I like those so much better :-)  You are signing SO WELL!  I love watching you talk with your hands (and listening to your sweet little babbles, but those sounds I don't understand). You are pulling up to stand and starting to cruise around furniture.  You went on your first bike ride on Mother's Day!  It was awesome.  You could hear your giggle all through the park.  I love watching you and seeing you explore new things and experiences.  We all do!  Callie was overjoyed watching you, watch an ant craw on your foot.  You bring so much joy into our lives.  You remind us to slow down and find the joy in simple.  A smile, a giggle or a new learned sound can make this busy-stressed-out momma stop in her tracks and remember why she wanted to be a momma in the first place.  I love you, as well as Callie, Zachary & Nathan.  You are my special blessings.  

Love Always xoxo,



Thursday, April 3, 2014

March 2014

Well Jax its been about a month since I've written.  A lot has happened in the last few weeks.  March was a quiet month for doctors appointments (everyone is waiting with bated breathe (well I am anyway) on your genetic test results).  But April is set to be really busy, busy.  This month we said goodbye to our AMAZING PT (Physical Therapist) who had been with us since you were 4 months old.  She got a great job opportunity and we wish her the best.  But trust me buddy, you and I miss her so much.  Its an aspect to having a special kiddo that many people don't think about.  It can be difficult having different people in and out of your house.  We have to learn to trust them, and see them as a member of the "team" almost family. You have a speech teacher 2x a week, PT 2x a week and OT (occupational therapy) 1x a week. So that's 5 hours a week just dedicated to your therapy.  You and I both become so close to these very amazing people.  They have seen you grow and already beat some of the limitations that doctors placed on you.  I attribute so much of your growth to their (and your!!) hard work and dedication.

Something awesome did happen this month.  We got to visit with 2 very special friends.  The hospital floor that we spend most of our time on is known as ICS.  It stands for Integrated Care Service.  Basically it means that when kiddos have lots of complex needs that can't be treated by just one aspect of the hospital, this is where they come.  All the drs from all the different specialties come to the ICS floor, with one main "diagnostic" pediatrician leading the pack.  ICS drs are great and the nurses are some of the best! They are used to complex kiddos and never ever see rare as impossible.  They know all your allergies.  They order special diapers for you before you get to the floor.  Most of them will sign with you and know which side of the crib to approach so you can hear them coming.  Well because we spend most of our time here, we have met several other families in situations "similar" to us.  Really there is nothing truly similar; other than that you are an amazing group of "medical unicorn" kiddos.  But anyway, your previous roommate Avery was visiting from IL and we got to see her and her amazing family!  Avery has PWS (Prader Willi Syndrome - click on link for more information in regards to PWS!) and a few other complicated things, but let me tell you, that girl is a rock star! We even got to have Avery's 2 big brothers sleep over.  Her momma has been the biggest inspiration to your momma!  Her friendship made the longest of your hospital stays something I now cherish. We ALSO got to visit with Caden and his momma!!!  She is also amazing.  Caden has CP and a connective tissue disorder called Ehlers-Danlos, plus lots and lots of un-diagnosed stuff.  (To learn more about their story, click here: Cause Caden CAN.)  When I spend time with these mommas, I realize that you and I are not alone. Other people do spend their days fighting with insurance companies, calling out of state doctors and hospitals, following up on research studies done in the back labs of Universities like Harvard and UCLA.  All the strange stuff momma does that she never thought she would.

March 26th was Epilepsy Awareness Day.  That is a REALLY big deal in our house, because as you know, your big brother Zachary has epilepsy.  He was diagnosed when he was 18 months old.  It was a bittersweet day for me because I realized you were the EXACT age Zachary was when he had his first seizure.   A few of your doctors feel that you and Zachary may have the same "thing" but that it is presenting it self differently.  Now we are on high alert to watch for seizures for you.  Momma knows that God has this too, though.  Plus all the neurologists know better than to give you any seizure meds.  If need be, we will try Keto FIRST!! Daddy & I are so blessed with the example that Zachary is for you.  He inspires us just like you do.  The Lord has truly blessed this momma with some down-right amazing kiddos!
We wear PURPLE for Zachary!
Like our bow-ties? Visit Seven Hearts a Bowtique!
(Yes, its a shameless plug for my friend who's daughter has the PWS.  But trust me, her stuff is AMAZING!)
Well Jaxon, the last part of those letter to you, is the same as last time.  We need you to GROW!!!  You still have not gained a single ounce.  Now, you are not losing any either.  But you literally eat almost around the clock.  The drs are also very concerned about your chloride levels.  They have us "salting you" 4xs a day. They just increased the dosage on the sodium chloride again, because your levels were just as low as before. We are trialing Corn Starch this week, hoping that helps keep your sugars up to normal levels.  They took you off the medicine we put you on during February because it stopped working.  They had hoped it would last at least 3 months, but 1 month was all they got.  It was also causing problems with your vitamin D & electrolytes.  So its better that you are off it, now just to find something that works!  I know we will though. You know I will keep searching until we find a working solution.  Remember that we love you always.
                                                                                   Love Momma

Oh and I almost forgot.  Some of Momma & Daddy's closest friends have decided to do a benefit for you. We are beyond blessed and humbled.  We are so thankful for them.  Thankful isn't enough of a statement, but I will try to do better next time :)  Their hope is that this will help us better be able to fight for what you need - to get you to the right doctors, on the right medicines and with the equipment your body needs to be its best self.  What amazing people we have in our life Jax!!!

Thursday, March 6, 2014

Well that was an interesting experience!

Well Jax, yesterday was a crazy day at the doctor's office.  While I would love to keep catching you up on how months 13-17 have gone, I think I'll share about yesterday's visit first.

Yesterday we went to visit your surgeon and nutritionist to check on your G-tube site.  Our surgeon is the BEST as you know.  He always holds you and makes you giggle.  He fixed your belly when your first surgeon (who shall remain nameless, because hearing his name makes me want to punch, cry, yell, etc...) did a botch job on your handsome little tummy.  He listens and says you are one of his favorite patients ever. His nurse says its because you giggle at all his silly faces, but I think like me, he sees how awesome you are! Anyway, I started off with the nurse and all her regular questions, new allergies, med changes, food ratios, etc...  Then I asked her to print off your growth charts.  I knew they weren't looking good, so I had prepped my mind to confront the doctor with this problem.  Today, I thought, I'm going to fight for your weight.

All the Xs are from different scales all over the hospital.  Weight varies from scale to scale.
  So from 9/10 months on, you my little man, are essentially the same size.
So the Dr. walks in, first turns to you and greets you with a smile and fist bump (he always remembers that you like to do that).  Then says, Hi Sandie, I'm extremely concerned about Jax's weight, lets address that first.  WHEWWWW.  All the pressure was gone, finally a doctor that was paying attention to this trend. Now Jax, you may wonder why ask a surgeon about weight gain?!?!  Isn't that GI or nutrition or General Pediatrics?  Aren't we only here so he can see your G-tube site, change it, and send us on our way?  Well 3 reasons. First - when we were inpatient during that dreaded Nutramigen, Elecare 24 day stay of vomiting, Robin (this drs nutritionist) was the one who listened to momma, went head to head with the OTHER nameless surgeon to fight for US!  She has held you in the middle of your uncontrolled vomiting, sang to you when momma was too tired to try to calm you anymore.  She calls companies to check allergies and NEVER believes that rare = never.  So these 2 amazing people come as a team.  Whenever we are inpatient, I have every floor nutritionist call her before they do ANYTHING.  Secondly, this surgeon has seen INSIDE your belly.  He knows its shape, seen the damage done by the reflux and the allergies.  Finally and most importantly, he has told me time and time again, that you, Jax are one of his mission babies.  He is going to see this through until we find a diagnosis/cure/treatment plan.  He wants to help you!  You are important to him!  Which is more rare concept than you would think at a Children's Hospital.  

So he changed that yucky med that made your belly hurt so bad (even when I BEGGED GI too - believing, like I do, that quality of life is most important).  We played with your calories and he is going to let you try to fit your pudding into your belly 2x a day!  He looked at all your blood tests.  Apparently during our most recent hospital stay, your labs showed that your vitamin D and potassium are dangerously low.  This was unbeknownst to me, but I will give them we were in the middle of snow storm and we were discharged by a resident. So he added those into your food, hoping to make you feel better.  He wants to see us back in 4 weeks, and he is hoping for weight gain!  While we may still be searching for the BIG answer, hopefully these increases and changes will affect the problem.  As he left, the doctor touched my arm and said, "You are a great mom.  We will figure this out.  You are a wonderful advocate and we need to see more moms like you, never forget that when things get hard."  Well if that didn't make me  But sometimes even moms need to hear that they are doing ok.  I often struggle with "did I push too hard vs not hard enough."

My prayer for you these next 4 weeks is that you gain.  We NEED you to gain weight!!  You have not gotten any bigger in 8 months.  Momma loves that you are her 'baby" but a toddler size boy is ok too!!  
Ohhhh and on a side note, we got stuck on a elevator for 45 mins trying to leave the hospital!  It was crazy! We were stuck between 2 parking garage floors.  Momma believes that God may have been protecting us from the accident we passed on 42 that seemed to take place about 45 minutes earlier ;-)  I love you always!

Friday, February 28, 2014

Jaxon's First Year

Well, baby Jax, we are almost 18 months into this journey.  I haven't killed any doctors or maimed any nurses (yet).   Although I've wanted to, I promise you that.  These last few months have been an even bigger whirlwind of visits and hospital stays...but I digress.  Let me start at the beginning.

Jaxon O'Neill Bellwoar, born September 18th, 2012.  6lbs, 10 ounces of pure joy.  You came into this world on your 3rd attempt, after 2 tries thwarted only by doctors and their meds, (I was fully prepared to welcome you EACH time you tried to join us).  Daddy wasn't able to be there, he was literally half way around the world, but I can promise you he wanted to be!  You didn't cry for a few minutes and came out with your eyes wide open, taking everything in - all the noise and commotion - Mommy & Miss Melissa crying, nurses shuffling, trying to figure out why you hadn't cried yet.  Looking back and seeing your personality, we now know that nothing was wrong, that's just who you are.  You don't make a fuss, you're calm and forgiving.  Peaceful in a crazy world.  Joyful in times when most would be sad.  We started you on baby formula, as mommy was not allowed to breast feed (I promise you, drs orders, I was NOT allowed for your safety & mine.).  You did OK for the first 24 hours, then the nurses began to joke about you being a poop machine.  They thought maybe it would pass, and changed you to a gentler formula.  We went home and the pooping continued.  After 2 days at home, you were losing weight and I counted 15 poopie diapers in 6 hours!!  The doctor brought us in and changed your formula to Nutramigen.  Ahhhhh the pooping stopped!!  You were a good baby, sleeping and eating, still not gaining a ton of weight, but doing OK. Daddy came home when you were 3 weeks old.  It was the best day!

Your first 2 months were very crazy.  Daddy was busy catching up on his other job and figuring out how to be an amazing Daddy to 4 instead of 3.  We had Superstorm Sandy.  Businesses were closed, people didn't have food, electric, water.  Daddy was working non-stop, helping to turn the power back on, going on firecalls, accidents.  Mommy started noticing that this cough you were born with was getting worse.  The doctors had hoped it would get better, but it hadn't.  I took your siblings in for their flu shot and Dr. Andrews noticed the coughing and immediately ordered a chest xray.  They said the xray looked like pneumonia but they weren't sure.  That night you stopped breathing 8 times.  Mommy and Daddy were so scared and took you up to CHOP.  The next 19 days were difficult.  You had tests every day.  Breathing treatments and blood draws.  We spent time in nuclear medicine that made your insides glow (it was actually pretty cool). They finally figured out that you were silently refluxing all the way past your nasal cavity and aspirating on your reflux.  The doctors also said you had dysphagia (swallowing difficulties) with pooling on your larynx. You were also considered failure to thrive, meaning you had stopped growing, and had microcephaly, meaning your head/brain is extremely small.  Your legs were extra floppy and you weren't trying to roll over or sit up.  The drs said you had hypotonia, which means you have low muscle tone, and would possibly have trouble down the road walking, standing, etc...  They also said that you failed your hearing test. The doctors gave mommy and daddy training on an NG tube.  Yuuuuck!  We hated putting that thing down your nose.  But we did it so you could eat.  You had to be hooked to the feeding pump for 22 hours a day.  They gave you a bunch of medicines, told us to sign you up for Early Intervention and sent us home.  One of the attendings (with whom I'm forever grateful) referred us to Dr. Hogan's office.  As you know, Dr. Hogan, ROCKS!!!  She is a CHOP diagnostic and complex care doctor who manages all your different doctors and sees you as a "whole" baby, not just one specialty at a time.
We went to a lot of doctor appointments that December and it was decided that in January you were going to need a GTube.  You were always pulling out the NG and it was irritating the lining of your esophagus.  The surgery was fairly simple, it was what followed that was difficult.  You couldn't handle any food going through your GTube.  You would scream and cry, vomit profusely.  This went on for days.  You lost even more weight.  We were stuck in a holding pattern.  The doctors tried chimney feeding.  They put in an NJ (through your nose again - so you had both an NJ & G tube)  I begged the doctors to change the formula.  They said "no, it can't be that, we don't know what it is, but it can't be the formula.  He was fine before on the Nutramigen".  Finally I asked for a nutritionist.  I pleaded with her, saying "what is it going to hurt to try?". She agreed.  We stopped all of your feedings for 12 hours.  Then we tried Soy formula.  Oh my....within an hour you were vomiting and screaming, you became lethargic and dehydrated.  That was stopped and we gave you 24 hrs of belly rest.  Then we tried Elecare and we waited....nothing happened.  We got you up to full volume feed within 2 days.  You were eating again!!  Many months later we know that you had an FPies reaction and that with all allergic reactions, when your immune system becomes compromised (stress from surgery) that allergies can present more harshly than before.  They sent you home on an NJ (tube through the nose into the jejunum - deeper than an NG - which is into the stomach) and left the G in place.  It took almost 4 weeks for us to go home.  Over the next few weeks we went back to the hospital many times, you pulled out the NJ and it could only be placed under xray, so back and forth we went.  Seriously, I can drive to CHOP in under 55 minutes (lets just not tell daddy)  Finally you had surgery to turn the G tube in to a GJ tube.

By March you had started all your therapies and were starting to grow a little.  You had a couple sleep studies (you had mild obstructive sleep apnea) and an overnight EEG to check for seizures (none!!  wahoo). You still had a pesky cough, but seemed OK.  We learned, through your spinal tap, that when your brothers had gotten Fifths Disease (5th form of measles) that Mommy & you got it too!  It had crossed the placenta. A lot of babies who's mommies get fifth disease AND it crosses the placenta, don't make it.  They develop fatal fetal anemia or are stillborn.  You are officially our miracle baby!!  The Neurologist thinks this may be why you have hypotonia (low muscle tone), hence the severe GERD, as well as being developmentally delayed.

We were sent to a new surgeon, whom we love, and he thought it would be best to redo your GJ, turn it back in a G and put it in a better spot in your stomach.  He was also going to do a fundoplication (stomach surgery to wrap the stomach around the esophagus to help alleviate severe GERD (reflux)).  In order for him to do this safely, he wanted you to be 13 lbs - you had some growing to do.  In April you developed stomach prolapse and an inch of your stomach came out from around the base of your GJ.  The prolapse developed an infection for which you needed IV antibiotics.  We stayed in the hospital for 3 weeks, finally putting you on TPN (IV nutrition) so we could remove the current GJ, let it heal, have you grow so you would be ready for your fundo & second G Tube surgery.  The surgery was a success and just a few days later (after almost a month stay) we were able to go home!   
The summer went very fast!  You loved going to the beach and you worked hard in PT.  We learned more about your FPIES & EoE - both rare food allergies that happen in the gut & esophagus.  The reactions are delayed and for FPies can take 2-8 hours to show up.  Basically your insides have a reaction to the food, instead of "classic" allergies which can be seen from the outside (hives, rash, etc..).  We also learned you had asthma and a few "typical" allergies.  You got tubes in both ears. This definitely helped with your ability to hear.  You love to watch us sign though, so I think we will keep at it :)  You also had another EEG & probe down your throat for 24 hours that took "pictures" of what was happening.  You are still a "small fry", so the doctors called in multiple other specialties looking for reasons why you have trouble gaining weight, even with your incredible calorie intake.

But even with all that, you are still achieving, still smiling, still moving forward.
  Our goal was that before your first birthday you would sit up unassisted.  Well guess what?  You did it!!!  No pillows or anything to lean on, just you...hanging out!  Mommy and Daddy are so proud of you!  

September 18th, 2013 - A whole year old!