Charlie Update & More Tests

Sooner than expected, we got a phone call from the children's hospital with Charlie's immunology test results. The good news is that his overall immunoglobulin count is good and that he is producing functioning B and T cells (click here if you need a little biology refresher, I know I did!) This means that when he is sick, his body can handle the illness like it normally would. The not as great news is that it appears that his body has so far been unable to retain antibody titers, the "memory" that helps your body learn a disease and prevent reinfection.

When looking at his blood work, it appeared as if he had not received his TDAP vaccine, pneumococcal vaccine, or HiB vaccine despite being up to date with all initial shots and boosters. He could be lacking immunity for other vaccinations, but these are the ones they typically test for at this stage of the game. For some reason, his body is unable to use these vaccines to develop antibodies against diseases, which means though he is vaccinated, he is currently susceptible to them. This could also be why he has been plagued with otherwise simple, but recurring infections such as ear, nose, throat, lung, and intestinal infections. Individually, they are simple childhood illnesses, but combined into one 3 year old's file, it's a symptom.

What now. Well, after I had a small freak out that my once thought to be vaccinated kid isn't really protected, the doctor told me the plan. Charlie will be starting prophylactic antibiotics from now until we figure out what is going on. We are hoping it doesn't cause his stomach issues to flare up, so lots of probiotics will be on board as well. Let's pray for no tummy issues.

In the meantime, he's going to be revaccinated with a different kind of pneumococcal vaccine called Pneumovax 23. It covers a wider range of diseases than Prevnar 13 and, though I don't know the scientific words for it, seems to stick better in children with this issue. In 4-6 weeks, he'll get more blood work done and one of three things will happen...

1) He will have a positive response to the vaccine and retain the antibodies. If this is the case, the doctor will still follow up with him every few months to make sure he's maintaining a good level. It's not a fluke that he has no antibodies from his previous vaccines or illnesses - something is happening, but "how fast?" is the question.

2) He will have zero response to the vaccine and show no antibody levels when the test is rerun. In this case, we will talk about different therapy options to treat the deficiency.

3) He will develop antibodies as a result of the vaccine, but lose them quickly. In this case, the test will show a reduced level of antibodies meaning he has the ability to gain immunity, but cannot keep it. This would also result in a discussion about immunoglobulin therapy.

With flu season rapidly approaching, I would be lying if I said I wasn't nervous. I'm nervous for him and I'm especially nervous for Ginny. If Charlie gets sick, he has a strong enough immune system to fight it. Having a weak ability to fight off illness, however, means he can bring home everything under the sun and potentially give it to Ginny. She has a normal immune system on the front end, but if she does actually get sick, she'll have a hard time fighting it on the back end.

This is a lot to digest. On one hand, it is an incredible relief that we weren't overreacting to the number of infections Charlie has had in his lifetime. On the other hand, it means more blood work and who knows what else in the future for him. While I readily acknowledge that in the grand scheme of what could be wrong with my children, we are comfortably and safely seated in the shallow end of the pool...it still doesn't feel good. All we can do is be thankful for the resources and support we have access to during this time and pray for more positive/positive-ish news.

All I can say to wrap this up is, please get your flu vaccine and make sure your family is vaccinated. I'm not looking to start a vaccine war, but when a child is unable to take advantage of the security vaccines give, we have to trust that others around us are protected and not unknowingly spreading disease. For more information about immunizations, visit the Center for Disease Control's website or speak to your pediatrician/doctor.

Running More Tests

Ever since he was tiny, Charlie has been a fairly sick kid. It's hard to quantify what that means because all kids get sick and all daycare kids get especially sick, but I've always wondered what was too much. In his short life, he's had numerous illnesses and infections that few others around him seem to get. While the occasional strep epidemic rips through daycare, often he's the only one that gets sick...really sick. From bronchitis to pneumonia to croup, strep, RSV, and at least 15 ear infections, he's had it all. Don't forget about that year of c diff that he just couldn't shake, no matter the antibiotic. It's not just what he's getting and how frequently, but the number and strength of antibiotics needed to clear it up....it's just too much.

After meeting with a second gastroenterologist about his c diff infection, she took one look at his chart and told us that she couldn't help us until we got his immune system checked. This was the first time a doctor had suggested that maybe this was more than just illness, but a weak or impaired immune system at fault. After a summer of appeals and letters to the insurance company, we got an all inclusive referral to the immunology specialists at the Children's Hospital of Philadelphia; one of the best hospitals for this specialty. It's out of network (way, way out of network), but by some crazy fortune we got it approved.

An 8:00AM appointment was made and while we didn't get a spot at the Ronald McDonald House for the night before, they did help us make a reservation at a nice hotel a block away at a seriously discounted rate. Together, we headed out to Philly.

We had started telling Charlie a few days earlier that we were taking him to a special doctor in the city. He was not happy. This child does not like doctor and quite frankly, I don't blame him one bit. Luckily, once we arrived, the city it's self was enough to distract him. Getting a room on the 10th floor didn't hurt either.

The next day, we walked to his appointment. I took Charlie in and Jeff took Ginny for a walk. We've been to several specialist appointments for one thing or another and this was, by far, the best appointment I've every taken a child to. We sat with the doctor and his team for TWO HOURS talking about Charlie's history, his growth and development, my concerns, their examination of him, what tests they wanted to run. I truly felt like they were trying to get a clear picture of what was going on and making a game plan. I had fully expected to have 15 minutes to explain what was going on, be handed lab orders, and go home. They even gave Charlie (and me!) crayons while we waited for the doctor to look things up and put together the lab orders.

Though the appointment was significantly better than I expected, it still included a ton of blood work for poor Charlie. Seven vials of blood. UGH. I felt so, so bad having to hold him down so they could draw it. Thankfully, the phlebotomist was amazing and stuck him on the first try and got in and out as fast as she could. The blood work will break down the antibodies and immunities that he has and has built up over his life time and see how well his immune system is functioning.

On a nerdy note, the science behind what they're doing is kind of amazing. They can pull apart his blood and actually look at what antibodies he has, what is missing, and how well he is making certain cells. We should know more in about two weeks.

Daddy hugs make everything better.

I have always wondered whether his immune system was up to speed. I hear a lot of excuses when he's sick; he was a preemie, he's in daycare, all kids get sick. It was such a relief to hear from the doctors that I am not, in fact, crazy or overreacting for wondering this. After looking at his file, they are just as concerned. Obviously, I'm hoping these labs come back that nothing is wrong, but either way, I just want to know what is going on and how to help him stay healthy.

So do donuts. Donuts also make things better.

When Doctors Suck

This week has been frustrating, to say the least. Before I get started, read about why we "fired" Ginny's endocrinologist a few weeks ago.

...alright, caught up? Cool.

Over the past few weeks, Ginny has been asking for snacks and drinks more frequently - like numerous times a day. And not just asking; standing in the kitchen having an absolute melt down pointing at the snack cabinet. We'd try to be a bit healthier and give her cereal or fruit, but most times she'd turn it down and continue to cry. She would point and point and point until we gave her Goldfish, pretzels, crackers....anything salty.

Ever have one of those moments where you realize a pattern has been in place, but didn't notice it until that moment?

While on one of the CAH related groups on Facebook, I saw a picture of a child drinking pickle juice - he was craving salt. It clicked - could non salt wasting CAH kids still crave salt? I asked the group of other Moms and they responded with a resounding yes. Even though Ginny does not waste salt as a part of her condition, her aldosterone and electrolytes could still become imbalanced causing her to need extra salt. I had no idea. They asked the last time she had her renin level checked and after checking her online lab work portal, I saw it was checked back in May and the result was 31.1 ng/mL/hr. Too bad the normal range for Ginny's age maxes out at about 4.6 ng/mL/hr.

How did we never get a phone call about this?! 

I called and left a message with the endo nurse asking what the hell was going on. As I've said before, I adore our endo nurse - she tries so hard to make sure we're in the loop with things. When she called back, she sounded concerned. She said that she followed up with the doctor and was trying to get him to call us back. The next day, he finally called. Through his normal bumbling, oddly uncertain tone he tried to explain that since her last electrolyte test was fine (ya know, back in January) that he planned to recheck her levels when he saw her again in August and monitor her in between.

Now, call me crazy, but how could he possibly be monitoring her from an hour away without letting us in on his "plan" of what to look for? If I'd known that salt seeking behavior accompanied by a high renin level was a bad thing, I could have called at least 3 weeks ago. I call bullshit on his "plan." It would have taken 5 minutes to call and say, "Hey, this level is a little high, but we're going to watch it for now. If you notice XYZ, call me and we'll reevaluate." But no. Wait until I call confused and pissed.

Once I explained the salt seeking behavior, all of a sudden he wanted to retest her levels and put her on Fludrocortisone (Florinef) to give her more salt. He put in the lab work and we took her in. Too bad he only ordered an electrolytes test (which was normal due to all the salt she's been eating lately to compensate) and not the renin level, which was the concerning number in the first place.

The kicker? The results were ready 2 hours after the draw on Wednesday morning (I know because I called the lab and picked them up) and he STILL hasn't called us. He either A) saw the results were normal and dropped it, even though he hastily put her on meds and said he'd follow up with results or B) forgot all together.

Honestly, I can't decide which one I believe more.

So what do we do. After filing a complaint with the hospital's patient advocate line, I'm done chasing him. Right now, Ginny is fine and we can give her all the salt she wants to keep her balanced. She has an appointment with her new endo in three weeks and I cannot wait to talk to her about all this.

I just want answers. I just want to be let in on Ginny's care plan. If you're going to order 4 tubes of blood for tests, I want a call when the results are in. Is that too much to ask? Damn right its not.

We Fired the Doctor

The concept of "firing" a doctor was foreign to me. Doctors are smart people - they know things. More things than me. Especially when it comes to specialists, you get referred and you go....that's kind of it. Except when it isn't.

Back when this whole CAH adventure started last fall, Ginny was referred to the only pediatric endocrinology practice in the area. Fortunately, it was relatively local, part of an impressive children's hospital network, and covered by our insurance. Really, I was grateful as heck. Throughout the past several months, however, I began to question the care and attention we were getting. As a side note, if you haven't experienced truly questioning your child's doctor let me tell you - it will make you feel like a crazy person. 

The practice we go to has several endocrinologists, each with their own interests, research, and specialties within the field. They see kids with all kinds of endocrine related diseases and disorders from growth issues to diabetes to adrenal insufficiency, like Ginny. We had been going about once a month for a check up on her growth and how her meds were doing. At the appointments, her doctor was very cordial, but awkward. It was never anything concerning until the last two months. Then came the red flags...

He mumbled a lot and never seemed to give me a straight answer. She would get blood drawn, but we'd never get results back. I'd call with a concern and he would never call me back, leaving the nurses to field my frustration and chase him down for an answer. I'd leave appointments without knowing her exact dosage. 

At first, I thought I was crazy. I was calling too much or my questions weren't serious enough for him to call back right away (or at all). Maybe I was going about this the wrong way. Maybe I wasn't asking the right questions at appointments. Then it got worse. 

It took 3 weeks to get a refill prescription for her meds. It took six weeks for him to agree to a script for Ginny's emergency injection after I found out that our EMS rigs don't carry it. I'm still waiting to hear back about her blood draw results from the middle of May. I found out that her twice a day dosing of meds is completely illogical when her medication only lasts 6-8 hours. Oh, don't worry, its not like it's important or anything.........

As if I didn't have enough to worry about, I was stressing over this so much it was making me lose sleep. Her disease can turn from nothing to something serious so fast and the thought of something happening because I wasn't getting a simple phone call back made me sick. 

I called and spoke with our nurse - a woman I ADORE. I expressed my concerns and she got quiet. She told me I wasn't crazy. She told me that I was the 5th parent to call that day with a similar concern about follow up and turn around time. I asked her what we could do. I mean, I'm just a parent - he's the doctor. 

Wait. Back up. What??

I'm a customer and he is a service provider. I don't mean to sound crass, but its true. When it comes down to it, I am a customer paying for a service and have hired him to provide that service. Just because he is an expert in this field doesn't mean I'm an idiot. I do my research, I talk to other CAH parents, I have my resources, and I am not happy. I want answers! I want return phone calls and test results and timely prescriptions! I needed to channel my mother and put a stop to this shit. 

The nurse tells me that she has been concerned about the care we've been receiving and recommended another doctor who has more of a focus on CAH and diseases like it. Not only that, but she also sees kids at a satellite office 25 minutes closer to our house. 

So here we are, rescheduled with a new doctor for August 8th. I'm incredibly excited to talk to this woman - who is apparently a no nonsense, straight shooter. I love it already. I have 100 questions for her. I want to talk about all these missing test results, I want to know what they mean, I want to know about alternative dosing schedules, I want to learn more about stress dosing. 

Never be afraid to question a doctor. I think I was afraid of being seen as "that crazy Mom," but the truth is I was right all along. I'm not crazy for researching or talking to other Moms. I'm not crazy for expecting the best for my kid. Don't ever feel crazy for going with your gut. It's the best tool we've got. 

Wordless Wednesday: Home Sick

St. Patrick's Day, Spring Break, and Sickness

What a week! My "relaxing" spring break turned into quite a whirlwind of activity, traveling, and unfortunately, one very sick baby.

I don't know if I've shared this before, but I grew up on Long Island. After heading to college, I didn't visit very often - especially after my family moved out to Pennsylvania. I've been back a few times, but lost touch with a lot of friends and family; friends and family that, fortunately, my sister stayed in touch with. Growing up, it was a tradition to go to the St. Patrick's Day parade in Manhattan with our Aunt and Uncle. I think I started going when I was only 9 months old! Year after year, we dressed up in our goofy green gear and watched the bagpipes, drums, and marching bands.

We hadn't gone to the parade in several years and decided it was time to pack up the kids and get the tradition back on track. We made a whole weekend of it - visiting old friends, eating some amazing NY pizza and of course hitting up the parade.

The parade was a lot of fun, but VERY cold. Colder than I remember it ever being as a kid. Charlie loved riding the bus into the city (of course), but wasn't a fan of walking through the city or sitting on the curb to watch the parade go by. He did, however, go all day without a potty training accident!! SCORE.

Say hello to my grumpy leprechaun. Which brings me to the last part of my spring break - the reason why I haven't posted in a week. Poor Ginny got SO sick while we were out of town. I realized she'd never been sick before; not like this. Her runny nose and cough turned into 104.5* fever and absolute misery. I felt so awful for her. On Tuesday, I took her to the pediatrician and she was diagnosed with pneumonia. If that wasn't scary enough, on Tuesday night we ended up in the ER because she was having difficulty breathing.

While her treatment didn't change, it was reassuring to have her seen. We encountered our first "What is CAH?" situation at the ER. I marked on her entry paperwork that she was cortisol dependent and each doctor/nurse we saw asked for clarification. The doctor tried to explain her condition to his med student, but didn't have it exactly right. That part was slightly less reassuring. :-/

She was pretty knocked out all week and spent most of the day sleeping and cuddling. By Friday evening, she was feeling a bit better and by today she's pretty much back to normal. Thank goodness! I missed her bubbly, smiley self. It was a long week.

Luckily, I had planned to take off the whole week anyway, so I didn't miss work. The downside was that I had planned to use that time to prep for her birthday party this weekend....and now I'm behind. Whoops. Time to kick it into high gear!

Boo Boo Charlie & Toddler Head Wounds

You can't tell a toddler, "I told you so." I mean, you can, but they certainly won't understand you. I think between Jeff and me during an hour long grocery shopping trip, we said some variation of, "Charlie, please don't run" about 1,000 times. He's normally not that rambunctious - guess he was having an off day? By the time we were leaving, I'm sure everyone in the store knew his name.

Then this happened.

BOOM. Running towards the automatic door, he tripped on his own feet, and fell just far enough away to catch the door jamb with his face. If you haven't experienced a head wound, even a tiny one, it bleeds A LOT. Like, an unnatural amount. Standing in the grocery store, with my hands and his face covered was quite a site. Thankfully, an employee brought us some paper towels and ice.

An ER trip later, he's got a super glued puncture wound on his forehead, a huge goose egg, and a clear CT scan.

We weren't sure at first whether to go to the ER. He didn't lose consciousness (he cried right away, which is good) and the bleed slowed down after a few minutes, but I try not to mess with big head knocks like this. He hit so hard, he nearly bounced. Turns out, the doctor said we made the right call and with a kid his age, its better to be safe than sorry.

How do you know if your kid needs stitches?

• If the wound is gaping (the sides don't touch)
• Has jagged edges that don't line up
• If it is a deep wound or puncture
• If red muscle or yellow fat tissue is visible
• If its spurting blood or will not stop bleeding after applying pressure
• Has any dirt or debris in it
• If it is on the face and could leave a scar

Charlie ended up not needing stitches, thankfully, and got his wound glued with special skin adhesive. The doctor said it could have used a stitch or two, but it was much easier and just as effective to use the glue. For larger wounds, stitches or staples could have been necessary. Thankfully, this was a little ding!

Next time, he's sitting in the cart!

Rare Disease Awareness Day

Tomorrow, February 28th, is Rare Disease Awareness Day. According to the National Institute of Health, a disease is considered rare if it believed to affect less than 200,000 Americans. There are about 6,800 diseases that fall into this category meaning about 1 in 10 Americans are affected by one disease or another. Together, it's a lot, but individually, having a rare disease can be scary and lonely, not to mention confusing to people unfamiliar with the disease.

Ginny's condition is called Congenital Adrenal Hyperplasia. She has been diagnosed with a specific form called 21-Hydroxylase Deficiency, which in the realm of CAH, is a fairly common cause of the disease. If you really want to get your fancy genetic pants on, she has a genetic mutation of the Cytochrome P450 Family 21 Subfamily A Polypeptide 2 (CYP21A2) gene. Specifically, she has a T & A transversion of the 518 nucleotide causing an Isoleucine & Asaragine amino acid change causing a pathogenic disfunction of the gene. Her DNA variant is homozygous, meaning its the same on both alleles.

CAH is considered a rare disease as it affects approximately 1 in every 15,000 people world wide.

What does this mean? 

It means that people are significantly less likely to be familiar with her condition, the dangers, the signs of trouble, and how to help her. This condition is rare to the point that I could walk into an ER with her in crisis and not have doctors or nurses immediately familiar with what she needs. As a parent, that is terrifying.

It is common with CAH for the child's endocrinologist to provide specific instructions via prescription for EMS or ER doctors to follow. Along with a small bottle of her medication, we carry a copy of this prescription in each car, the diaper bag, my purse, and with her things at daycare. We need to be prepared in the event others are not.

How do you get CAH?

CAH is an autosomal recessive genetic disorder, which means that both Jeff and I were carriers for it. We have no documentation of it in our families, so we never knew. All of our children have a 25% chance of having the disease, a 50% chance of being a carrier, and 25% chance of being completely unaffected. With a specific genetic mutation nailed down, we will likely test Charlie in the near future.

What is CAH?

Remember 10th grade biology? Well, I've recently had to brush up on it. Your pituitary gland (in your brain) releases chemical messages to tell your adrenal glands (on top of your kidneys) what to do to regulate your body.

The pituitary gland releases adrenocorticotropic hormone (ACTH) to tell the adrenal glands to make cortisol. Cortisol is a stress response steroid hormone. It helps to regulate blood sugar, blood pressure and heart muscle tone, aids in fat, protein, and carbohydrate metabolism, and activates anti-stress and anti-inflammatory abilities in the body.

People with CAH, however, lack the enzyme 21-hydroxylase needed to convert 17-hydroxyprogesterone (17 OHP) into cortisol. No 21-hydroxylase, no cortisol, no stress response.

When the body is under stress, there is typically an increase of cortisol. For those who supplement cortisol, however, their dose needs to react accordingly. A sudden increased dose of medication in response to an event is called a stress dose. Without this dose, the body can go into adrenal crisis, shock, and eventually organ failure.

Stress doses are typically given...

• With illness
• During a fever of 102 degrees or above
• Before surgery
• After an accident or injury

Signs of an adrenal crisis include..

• Lethargy
• Vomiting
• Poor appetite
• Headache
• Salt craving
• General feeling of being unwell

As you probably noticed, these symptoms describe almost any illness - another reason this is scary. As they are happening, however, blood pressure, blood sugar, hydration, and sodium levels can be quickly crashing. If I rush Ginny to the ER because she is vomiting and lethargic, demanding an injection of hydrocortisone, they'd probably think I was dramatic. That is, until I showed them her prescription and/or medical alert band (which we will get when she's a little older).

As parents, its our job to make sure everyone who cares for Ginny is able to recognize the signs of an adrenal crisis and when a stress dose of medication is needed. Friends, family, sitters, teachers - everyone will need to know. It's scary, but manageable.

We are fortunate to have caught this at a young age instead of during an adrenal crisis. She won't outgrow this and there is no cure. She will be on some form of steroid replacement for the rest of her life and that's just how things are. We're not sure what her future brings as women with CAH can be significantly shorter as adults and suffer from ovarian cysts, PCOS, and infertility. Obviously, no one wants their child to have an incurable disease, but we are extremely blessed that she is otherwise healthy and we have access to such caring doctors and nurses.


This day each year is a time for individuals and their families to share the stories of rare disease. Alone, they are rare, but together they are strong. Please visit the Rare Disease Day website if you'd like more information about events across the country.

If you'd like to learn more about Congenital Adrenal Hyperplasia or would like to make a donation towards more research, please visit the CARES website.

If you'd like to donate to the Global Gene Project to help fund education and awareness programs as well as community building and outreach, please visit their site here. 

Bringing a Toddler to the Dentist...

...is quite possibly the only thing worse than actually going to the dentist yourself. Seriously. I admit, we should have started bringing Charlie to the dentist much earlier than 3 years old, but he is such an anxious mess around doctors, we waited. Apparently, we waited too long.

I thought it was going to be perfect - they talked about the dentist and brushing your teeth last week at daycare. They sang songs, pretended to brush their teeth, the whole nine. A few days ago, we started talking about going to the dentist and practicing saying "aaahhhhh." Unfortunately, I underestimated his hatred for having his mouth touched.

Well, he technically got his teeth checked, but that's about it. All 20 are there, he's got nice spaces between them, and he has no cavities. It took 20 minutes of coaxing and 3 people to hold him down to get to that point, but what can you do. We rescheduled for 6 months and maybe by some miracle he'll be more calm. To avoid this happening with Ginny, I also scheduled an appointment for her, but something tells me that even at 15 months old, she'll be significantly more cooperative!

Any secrets out there for getting kids to cooperate at the dentist? I hope this isn't a regular occurrence with this kid. He needs to take care of those teeth!

When Your Toddler Needs Surgery

The tubes are in! Here's to another 18-24 months of ear infection free time. Thankfully, today's procedure when incredibly smoothly; he was in and out in about 15 minutes. Waking up from the anesthesia, however, was a little rougher. After a few minutes, we got him dressed and they let us leave. Once we were home, he was back to himself, resting up, and watching movies.

I realized that this is Charlie's 3rd surgery in as many years. Not nearly as many as some little ones out there, but I think I still have a bit of helpful information to share. Keep in mind, these are tips I've gathered from our experiences and all hospitals and procedures affect the experience, not to mention the age of the child. Over the past three years, Charlie has had a hypospadias repair (June '11), tubes and adenoidectomy (June '12), and today's tube surgery.


Prepare Yourself

Finding out your kid needs surgery, regardless of how minor, can be stressful. Take advantage of your doctor when they ask, "Do you have any questions?" Write down questions as the appointment approaches and keep a list even after you've met. There's no shame in calling the office before the procedure to answer any questions you have. As for hospital or surgery center procedures, you'll have an opportunity to ask during pre-surgery interview and/or hospital registration the week prior.

Here are some questions we've asked in the past...

• What will happen during the procedure?
• How long will it take?
• How do we prepare him for surgery the day before/day of?
• What kind of anesthesia will be used? What safe guards to you take with little kids?
• How long can we stay with him leading up to the surgery?
• Where can we wait during the procedure?
• How soon afterwards can we see him?
• What will he be like waking up from anesthesia? 
• Will he be in pain afterwards? What kind of pain management will be available?
• What can we expect the first 24 hours? 48 hours? Week?
• What restrictions will he have on his activity? Diet?

Charlie needed ear plugs while swimming and bathing
for a few months after his first set of tubes.

More often than not, you'll receive discharge orders in written form with some of this information. Read them before you leave and ask any clarifying questions you have. You can always call later if something else comes up.

After getting information from your doctor about what to expect, gather up supplies you might need before you head in for the big day. Pain medication, ice pops, gauze, even diapers - whatever your little one may need for recovery. Its no fun having to run to the store post-op because you forgot something you need.

Prepare Your Little One

Considering what your child is afraid of can help you focus your conversations about and prep for the surgery. For Charlie, he gets very anxious with a lot of strangers around and when things have to be done to him that are out of his control (checking his ears, taking his blood pressure, or even getting a hair cut or sometimes brushing his teeth, etc.) Perfect storm, huh? To help ease these anxieties we bought him a doctor kit for Christmas and talked to him about how we were going to the doctor and that the doctor would fix his ears. At this age, he can understand that his ears hurt and what the concept of "fixing" was, so he was amiable to the idea. You will know best what will work for your child, but here are some other ideas the nurses gave us as we were scheduling his surgery.

• Don't give your little one too much time to think about it. Talking about it a day or two ahead of time is plenty of time for a toddler to process it without having time to worry. 
• Ask if you can take a brief tour of the surgery center. I remember my sister going on a tour like this when she got her tonsils removed as a youngster. She tried on a gown and hair cover, got to hold the anesthesia mask, etc. 
• Read books about doctor visits or going to the hospital. "A Visit to the Sesame Street Hospital" by Deborah Hautzig was recommended to us as a good general book for little ones. 
• A few ear tube specific books are "Tubes in My Ears: My Trip to the Hospital" and "Chris Gets Ear Tubes." 
• There are also several tonsil and adenoid specific books like "Good-bye Tonsils!" and "The Surgery Book" if that's the procedure you're facing. 
• Buy a children's doctor kit and play check up. We bought Charlie the Fisher-Price Medical Kit for Christmas.
• Its important to stay positive about the surgery, even though you'll be nervous about it. Offer lots of support and answer questions as best as you can. Avoid making promises you can't keep (i.e. "I promise it won't hurt")

Surgery Day

Depending on the type of anesthesia being used, your child may not be able to eat or drink for several hours before hand. Because of this, when offices are scheduling they try to get the smallest kids in earlier for surgery. Charlie's first surgery at 7 months old, he was the first case at 7:00am. The second, he was called in around 8:00am, and today's surgery was at 9:30am. He couldn't eat anything past midnight and couldn't drink anything past 5:00am, but he did surprisingly well as we waited for everything to get started. We at our breakfast before he woke up and didn't mention eating and he didn't ask.

We asked ahead of time and found out that Charlie could bring a comfort object like a stuffed animal or a blanket, so he chose to bring Goofy with him. We also brought my laptop to watch Little Einsteins, his doctor kit, and a few other activities to distract him while we waited. The nurses gave him stickers (which he used to decorate Daddy) and a coloring book. 

Jeff and I brought some things to keep us occupied in the waiting room, though our wait was minimal. If at all possible, I recommend bringing another adult with you for surgery day. Kids can be unpredictable after waking up from anesthesia - some are sleepy and cuddly and some, like Charlie, are writhing, pissed off, incoherent messes. We took turns holding him in recovery until they released us. It was also very helpful for Jeff to bring the car around while I got Charlie ready to leave. 

 Tiny post-op Charlie. He was never a post-op cuddler. Always pissed.

Recovery

Recovery will vary from person to person and procedure to procedure. The important thing is to be patient. Your normally chill kid might be inconsolable and clingy for a day or two. Their activity might be restricted or medications might be on a round the clock schedule. 

With Charlie's hypospadias repair, he couldn't sit in any kind of crotch restricting seat or carrier for 6 weeks. A 7 month old, who could not sit up yet, couldn't sit in a bouncer, jumper, or baby carrier? Let's just say it was a long 6 weeks! With Charlie's tube surgery, there are no restrictions on activity and he will bounce back quickly. 

Remember to take care of yourself as you help your little one recover. Charlie's surgery today was a breeze, but his previous two lead to a long first night of pain medication and crying. Jeff and I were able to trade off and get some rest while still helping Charlie as best we could. If your'e concerned about your child's recovery or have other children to juggle as well, call in back up ahead of time to stay for a day or two.

Surgery can be very scary for parents and for toddlers, but it doesn't have to be. All you can do is prepare yourself the best you can and be strong for your little one. If anyone reading this has specific questions about hypospadias repair or tube/adenoid recovery, please email me! I'd be happy to give a Mom's perspective. 

I hope you never need this information, but if you do, good luck and best of recovery to your little one!

Ear Tubes: Take Two (Part Two)

Okay, lets try this again. Last Sunday, I wrote about how Charlie would be getting another set of ear tubes the next day, but when we arrived on Monday morning there was a mix up and we were bumped to a later date. Well, that later date has arrived. At 8am, we will be heading up to the hospital for new ear tubes.

Honestly, it was annoying when it happened, but the extra week to talk to Charlie about the procedure has been nice. He got a doctor kit for Christmas and has been giving us all several check ups a day. Not only is it adorable, but it gives us a lot of opportunity to talk to him about how the doctor is going to fix his ears.

So, say a little prayer and wish us luck. I'm not so much worried about the procedure as I am about how he'll react to it all. I'm hoping with Mickey and his doctor kit in tow, it'll be an uneventful morning. Here we go!

Change of Plans: Tubes Update

As I said yesterday, today was supposed to be tube day. We kept Charlie up later than usual and he thankfully slept until 7am. We dressed him and threw him in the car so we could drop Ginny at daycare and head to the surgery center. When we got there, the doctor spoke with us and apologized for the confusion. Confusion? What confusion?!

When I got the call on Friday to pre-register Charlie for the surgery, I mentioned that he was finishing up a round of Vancomycin for c diff, but that he was better at this point. We don't have a negative test result yet (he's getting tested again next week), but he's been significantly better for a few weeks now.   The nurse we spoke to didn't say anything. Apparently, she called back an hour later to cancel the surgery because the surgery center was uncomfortable with Charlie not having a confirmed negative test yet.

Except, she never called.

We showed up, after spending 3 days talking to Charlie about how the doctor is going to fix his ears, just to leave again. We'll have to schedule the surgery with the main hospital as they have better "precautions for this kind of thing." Charlie's ENT seemed so embarrassed - I felt bad for the guy. He was so apologetic about the whole thing, but I knew it wasn't his fault. He just gets time at the surgery center, its not like its HIS office. We're hoping we can get Charlie in on Friday at the hospital. It should be easy to squeeze him in - the whole procedure only takes about 15 minutes. He wants it done ASAP, before another ear infection has a chance to set in.

So instead of surgery and resting today, Charlie and I are having a cookie baking and movie date. I've wanted to take him to see "Frozen" since it came out, but haven't had the time. With Ginny at daycare, today is perfect.

Hopefully we can get rescheduled soon. In the meantime, back to the holiday grind.

Tubes Round 2

About 18 months ago, Charlie was referred to an ENT after 6 months of ear infections. It was awful - ear infection after ear infection and antibiotic after antibiotic. Eventually, it was recommended that he get tubes and have his adenoids removed. Once the surgery was done, it was like he was cured. He didn't have a single ear infection for well over a year.

This fall his tubes fell out. Its totally normal for them to fall out 12-18 months after being put in - usually the kid grows out of the problem and its all good. Within a few weeks, however, he was having problems again and not just ear aches - full on infections that perforated his ear drum and drained for days. Three in three months landed us back at the ENT. The good news is that the doc wasn't going to make us wait for more infections to pop up and wanted to put new tubes in right away. The bad news is that he's scheduled to go in tomorrow morning - two days before Christmas. The other good news is that aside from being a bit groggy, he'll recover quickly and be back to normal in a day or so.

So, tomorrow is the big day. Last time this was done, he was so much younger and didn't really understand what was going on. This time, I'm scared. He's so anxious when things are being done to him (like getting his ears or blood pressure checked) and I'm afraid he's going to be a screaming mess. We've been talking to him for the past few days about how the doctor is going to fix his ears so they don't hurt anymore and he understands at least that much. Poor kid's ears have been hurting him and he's lost a bit of his hearing, so I can imagine he's as excited as a 3 year old can be about surgery.

Hopefully, bringing Mickey Mouse will help ease his nerves. We have a matching Donald Duck (originally meant for his Christmas stocking) waiting for him when he comes out of surgery.

Wish us luck!

Teething Can Bite Me

See what I did there? It's true though - I'm so over teething and I'm sure Ginny is too. I thought Charlie started early when he got teeth at 5 1/2 months, but Ginny has been going strong since 4 months and its getting ridiculous. Poor girl can't get a break! She's got 6 teeth in (4 on top, 2 on bottom) and is getting two more on the bottom. Slowly. 

Charlie never took a teether, but I thought I'd buy a few for Ginny just in case. Good thing too, because she loves them. Frozen ones, chewy ones, hard ones - you name it and she'll nom it. At first, we bought a set of freezie keys by Bright Stars and they work great, but since they're attached, the others melt while she's chewing on one of them. After those, we got this set of fruit shaped teethers from WalMart and she loves them. We can pull out one at a time, so the others stay cold while she works on one of them.

We even sprung for a little Sophie, which she likes, but doesn't necessarily love. It is nice that we can clip it on things with the loops and bring it with us.

The whole sleeping through the night from 2 months old until 4 months old was short lived, but appreciated. With all these teeth sprouting, she's getting up at least once in the night, but we're not sure if its from the teeth or just a habit at this point. Oh, the mysteries of babies. The good news is that if she teethes like a mad woman now, she'll get them all fast and we'll be over this stage. Until then, pass the coffee!

Double Check Ups

The last week has been a big one for check ups. Charlie had a check up with his pediatric GI specialist and his 3 year well child visit and Ginny had a follow up with her endocrinologist. Both kids got flu shots and we're officially ready for flu season!

Charlie's well child check went fine. The pediatrician was impressed with his grasp on letter, shapes, and numbers and he was able to do an eye exam with the regular letter chart. Now that he's jumping, skipping, and talking in full sentences, any and all concerns we had about his development being delayed are put to rest.

Unfortunately, his GI check up didn't go as well. We're still trying to figure out what is going on and as it turns out, he's lost a pound in the past month. It could be a result of the stomach flu he got on our way back from Florida (complete with puking on the plane), but it still worries me. We're trying two new things - a new dosing schedule for his medication and a new probiotic. As it turns out, a bacteria based probiotic isn't effective if you're also taking antibiotics because its destroyed. Well, gee - that makes sense and I feel like an idiot for not realizing it earlier. We're switching him to a yeast based probiotic that is known to help with this type of issue. Thankfully, there is a lab brand of the stuff because Florastor is expensive (about $2-3 a day). Here's to a better month.

Ginny's follow up went alright. She hasn't grown an ounce or an inch since her 6 month appointment about 6 weeks ago. This means she's fallen down to the 5% percentile for height and weight. She started in the 60-70% range. I didn't think it was possible, but she's actually smaller than Charlie was at this age - and I thought HE was a peanut. It could be a fluke or it could be her medication. Her doctor scaled back her meds from three times a day to twice a day and ran some blood work to see what was up. We'll hear more next week about the results.

So, they're healthy - just not exactly growing. Their next check ups are at the end of December/beginning of January. In the meantime, Charlie's getting probiotics and PediaSure and Ginny is eating everything put in front of her.

Chunky kid vibes appreciated.

Doctor Day

Yesterday we met with a new specialist for Charlie's tummy trouble. We like his pediatric GI specialist, but it was nice to talk to someone else about what's been going. Let's be honest - this needs to get figured out right quick. Charlie was pretty much potty trained before he contracted c. diff from antibiotic use. I'd really like us to get back to that point!

The infectious disease specialist had an interesting theory - how can antibiotics help the infection if Charlie's digestive system is so irritated by the months of diarrhea? C. diff is a naturally occurring bacteria in our bodies, but its when an overgrowth happens that it becomes a problem. His body needs to be rebalanced, but the environment is less than ideal. He wants us to finish the round of medication prescribed by the GI, but after that, look into solving the irritation/inflammation problem before continuing to attach the infection. Now we're getting somewhere!

Thus far, Charlie's second round of Vancomycin seems to be working. He's back to his normal self and seems to be feeling better. I hope it sticks this time around.

He has to take this medication four times a day, making it a little more interesting than the normal "take at meals" deal. To avoid forgetting (or goodness forbid, double dosing) we keep a chart on the fridge. No need to find a marker, a simple swipe and we mark off what dose was given.

Cogenital Adrenal Hyperplasia

I spent the last 20 minutes breaking the tiniest pills I've ever seen into neat little halves.

I wrote last week that we were waiting for Ginny's lab results to come back to help explain her abnormal hormone levels. Originally, I thought we would have to wait until her follow up appointment in November, but the doctor called today.

Her 17 OHP levels were very high and her cortisol levels were very low confirming a diagnosis of Congenital Adrenal Hyperplasia. The good news is that she does not have the more severe form where the salts needed to stabilize the body end up dangerously low without regulation. She has a more simplified form and is able to regulate her salts and enzymes on her own. This still means, however, that her body does not make cortisol as it should and she will need cortisol replacement for the rest of her life. One half of a tiny pill, three times a day.

In the grand scheme of things, this is good news. We will be able to manage her condition with easily obtainable, inexpensive hydrocortisone. Her endocrinologist is very positive and confident that we can get this figured out.

It's tough news, but good news. It is just who she is and what she needs.

Waiting for a Diagnosis

To say there has been a lot going on is an understatement. Over the past six weeks, I've spent more time in doctor's offices and on the phone with the insurance company and pharmacy than I'd care to admit. What's going on? Too much. Like, I can't even make this stuff up.

If you recall/have been reading that long, you know that Charlie is prone to get sick with, well, just about everything. He's had RSV, croup, bronchitis, pneumonia, hand food and mouth, Roseola, pink eye, and countless ear infections and colds. After one too many antibiotics he came down with something different - clostridium difficile (c. diff). Remember way back in high school health class - our bodies have naturally occurring bacteria that protect our gut and make everything run smoothly. When that bacteria is destroyed, it leaves room for bad bacteria to grow. In comes the c. diff bug.

All summer, Charlie was having stomach issues, to put it simply. Explosive ones. For weeks, multiple times a day. It was impossible to potty train him when he had no control over his bowels. We took him to the pediatrician several times and they claimed it must be his diet or "just how he was," but I couldn't be satisfied with that. He was miserable. He started eating less, sleeping poorly, and wasn't his normal playful self. A referral to a pediatric gastroenterologist and we had a diagnosis.

It's been two months and two rounds of special antibiotics given 4 times a day and its still lingering. We've moved onto a third try of antibiotics and a new referral to a pediatric infectious disease specialist, who we see next week. The good news is that while he's on the antibiotics, he's my happy boy again. I'm not sure what the ID specialist will say or even what he could recommend, but I'm hoping whatever it is, it works.

Then, there's Ginny. Have I mentioned that I can't make this stuff up? At her 3 month appointment, the doctor noticed something strange while doing a physical exam and recommended we see a pediatric endocrinologist. Blood tests revealed wonky (for lack of a better term) hormone levels that couldn't be explained.

Here's another health class lesson - your pituitary gland, located in your head, is the command center for hormones released by your adrenal glands, located above your kidneys. Your pituitary releases something called ACTH which triggers your adrenal glands to respond by producing cortisol - the stress hormone. One hormone called 17 OHP is created by the adrenal glands and is converted into cortisol. Ginny's tests came back that she had an excess of 17 OHP, but a normal level of cortisol. Typically, if you have an excess of 17 OHP its because it is not being converted and you therefore have a low cortisol level. What does that mean? We're not sure. The prognosis could range from absolutely nothing to concerning. She had a controlled adrenal stimulation test conducted last week and we will get the results back in about a month.

While we're waiting for all the various test results to come back, we're sitting and waiting (and trying not to Google). I think I've done a pretty good job of keeping calm, but I can't help but worry about them both. All I can really do is thank God that we have good insurance and that we're so close to good medical specialists. I think I've unconsciously left no time for me to sit and think recently, keeping busy with 100 other things around the house, leaving little time for hobbies and blogging.

So, here I am back on the blog-wagon. I have been keeping a list of topics I want to post about like our Disney trip, our updated cloth diaper stash, some new projects we're working on, and of course updating about the kids. Here goes.

I'd Like to Forget Thursday, Please & Thank You.

We have been so busy the past few days - I don't even know where the time went. It all started with Thursday. Oh, Thursday - the day I'd like to forget!

I kept C home on Thursday so we could check out a new daycare in town and go to his 18 month well baby visit. The daycare visit was at 9am and his appointment at 10am, so we got up early to get ready and clean up a bit. I'm not quite sure how this always happens, but no matter how much time I leave to get ready, we're always running out the door late! Maybe its things like this...

Me: "Let's get your shoes on, C."
C: "No." ::goes back to playing::
Me: "No really, we have to go."
::runs upstairs to the front door::
::chases him upstairs, but forgets shoes downstairs::
::carries screaming child down stairs::
::fights to put shoes on::

At that point, I have about 30 seconds to grab up our stuff and go before the shoes come off again. He thinks he's so sneaky. :-)

As we're heading out the door to the car, C was still not happy about leaving. I had him in one arm and the diaper bag and my purse in the other. About 10 feet from the car, he threw his cup on the ground in protest.

You know that thing you do when you can bend down slightly and slide a kid down your side and plop them down on their feet? Yeah, that - except he wouldn't stand up. He sat on his butt and almost simultaneously slammed his head back onto the pavement.

He screamed immediately - which is always a good thing to hear after a head knock. I picked him up and all of his dainty little curls were matted with blood. I'm proud of myself - I actually didn't freak out. I knew that heads bled a LOT regardless of the wound, so I tried to check it out before deciding what to do. A man working nearby saw C go down and ran over - he was an EMT. We got C cleaned up and saw that though bleeding profusely, the actual wound was teeny tiny. ::whew::

I whipped out a snack, dried off his head, and he was happy as a clam.

We swung by the new daycare and did a quick walk through. He loved it, I loved it. C is currently at a daycare we all love, but its near J's work 30 minutes away. If he was closer to home, I could take him out for a quick doctor's appointment, etc. without having to keep him home all day or driving all over creation. I hate to move him, but this place is only a mile away and about $200 less a month, while still being as active, educational, and safe. Plus, they will take our cloth diapers! Woo! He'll go part time all summer while J is off work (just to get out of the house a bit) and then go back full time in the fall.

Next stop was the pediatrician for his check up. We saw the PA that we love and he did wonderfully. His ears are still clear (YES!) and he's growing like a weed. He's 32 1/2 inches tall, 27lbs 1oz, with a huge noggin. I never thought I'd see my little peanut in the 65% for weight! He got a vaccination and we were on our way.

The rest of the day went alright, if you forget about C skipping nap time, throwing lunch, and having several blow out diapers - in protest, I assume. One of those blow outs happened on the microfiber couch. ::sigh:: Blood, pee, poop, spit, snot, and sweat. If only he'd puked I could have gotten a prize in the bodily fluid Olypics! Wait, that doesn't exist? Damn. I tried.

It's ENT Time

After four double ear infections and one single ear infection in the past two months, we're being referred to an ENT (ear, nose, and throat) doctor to start talking about tubes. ::sigh:: I knew this was coming.

The past two months have been rough. C gets a runny nose, that turns into a gunky nose, then one night he wakes up wailing and pulling at his ears. We go to the doctor, they diagnose an ear infection or two, and give oral antibiotics. Antibiotics don't work after a few days, so he gets an antibiotic injection, and is healthy for a few days. Rinse and repeat.

I feel so bad for this poor little guy. The nights when he's getting an infection back are the worst. He only wants to be held, which is understandable since when he lies down the pressure on his ears causes pain. We've spent many nights in the glider recently.

It's strange - when we were in Virginia, C had gotten colds and even one or two more serious viruses and illnesses, but never a single ear infection. I thought that maybe he just wasn't an ear infection kind of kid, but I was wrong. My theory is that moving back north, in all of its high pollen and pollution glory, has messed with him big time. He has been sicker since we moved here than he's ever been. Since August he's had croup, bronchitis twice, pink eye, a stomach bug, several colds, and that random virus that had him spiking 105 fevers for a week. I know he's in daycare and all that, but C'MON! Can the poor kid get a break?

J is taking C back to the doctor this afternoon for a follow up appointment and to get more information about the ENT. I'm hoping we can get in soon for an appointment and get this feel better plan in action. The less middle of the night screaming in pain, the better...for all of us. At this point, I'm not even concerned about the surgery - I just want him to feel better for more than a day or two at a time.

But really - surgery last June AND this June? Lets not make this an annual event, little man. Momma begs you.