raising a mommy

raising a mommy

Wednesday, April 10, 2019

keeping my cool

Throughout this whole ordeal with the baby, and the continued ordeal with the baby, I've heard so many people say something to the effect of: "You're so calm through this". There certainly have been tears, but for the most part, yes, I do think Husband and I have done a pretty remarkable job of keeping our cool. There are two reasons for this:

#1: We have an amazing support system around us.

#2: We don't have a choice.

If you are struggling - with your own diagnosis, with the diagnosis of a loved one, with postpartum depression, with a string of bad days that have you down for no apparent reason - seek help. You do not have to do this alone. Asking for help does not mean that you are weak. It shows how strong you are. Just because some people appear to keep their cool does not mean that you have to, as well.

Here's the deal with my son's Lennox-Gastaut diagnosis and my apparent calmness: I realize that it sucks and I have mourned (and continue to mourn) the fact that my little dude may never have a normal life. But right now? He is doing amazing. He is defying the odds. His last several EEGs have shown remarkable improvement. He is developing socially, physically, verbally, and mentally at a steady rate, roughly a year behind his actual age dictates he "should" be. I realize that this could stop at any moment, he could start having a different type of seizure, or he could stop responding to his meds. Yes, it would be easy to dwell on that. I read stories about LGS children who develop fairly normally until the age of four or six, and then they stop, they regress, and their whole treatment plan has to be reevaluated. Sometimes the doctors just aren't able to get it under control. It doesn't mean they aren't good doctors. That's just the nature of this diagnosis. I am well aware of the fact that could happen to us.

But why would I want to dwell on it? Worrying about the future does nothing but rob me of the joyous present. And friends: there is so much joy to be had right now.

There are mountains to be climbed...

...meals to be eaten...

 ...books to be read...

and love to be shared.

These crazy little munchkins are raising a mommy who is present in today. Go hug a loved one.

Friday, April 5, 2019

lennox-gastaut syndrome: 101

I recently shared some information about infantile spasms, Baby D's first diagnosis. In November of 2018, we learned a scary truth. His infantile spasms had developed into something new: a rare and serious form of epilepsy called Lennox-Gastaut Syndrome (LGS).

The absolute best resource I've found for learning about LGS is this site. It gives you a ton of information in a way that is easy to understand. I really don't even need to write this post at the risk of being redundant, but I figured it might be good to make things a little more personal. When you can put a face with a diagnosis, it gets real. So I'll give you the super abbreviated version and this face to go with the diagnosis:

LGS is a rare seizure disorder, occuring in just 1-4% of all childhood epilepsy cases, or .1-.28 people per 100,000. A person with LGS can experience different kinds of seizures.  While Baby D's have all looked like his infantile spasms did (like this video), that could change at any time. Read about the different kinds of seizures here.

Because there are several different types of seizures and because they can change, treatment is challenging. One medication can be working really well for awhile, and then it can suddenly stop. We were warned of this the first time we spoke with his neurologist. He explained it by saying that treatment of LGS isn't necessarily a straight path. You don't try one medication because that's "the best" one and the move along a defined path from there. You aim for better each time. It's basically a very educated game of trial and error.

So what does treatment look like now? For us, at the time I am publishing this, Baby D takes a small pharmacy of medications each day: three that are specifically seizure meds, two dietary supplements, a multivitamin, and melatonin because he has trouble sleeping. I don't know that it actually does anything, but if Baby D with no melatonin sleeps even worse, that is not something I want to experience. Also, fluoride drops, because his teeth are in rough shape. I'm pretty sure this is an indirect result of the pharmacy that he ingests on a daily basis. I put so much awful stuff in his mouth, that he doesn't trust me with something like a toothbrush. It's a battle, and one that I am not winning at the moment.

In addition to the medication, we have physical and occupational therapists who come to our house each month to work with Baby D. We are so fortunate right now that he is progressing as well as he is. He's definitely still behind where a typical child his age would be, but he is catching up and gaining new skills very quickly.

So what's the prognosis?
That's a loaded question. The short answer is that we have no idea, so we're enjoying these days of progress. The long answer: he will likely have delays, possibly significant ones. He could be doing very well, and then suddenly stop responding to his meds. He could start having different kinds of seizures and we could have trouble finding the right combination of meds to control them.

"With LGS, some children have no developmental problems at first. But, with time, these problems may begin to appear."

"Unfortunately, there is no cure for LGS, so freedom from seizures and normal development is very unusual."

So...we don't know. Drop seizures are very common, so he may need to wear a helmet to protect himself if he starts having those. Emotional, behavioral, social, physical, and academic delays, to some degree, are likely. Again, the website above does a great job of spelling out the different possible outcomes. We're just taking it day by day and enjoying the good ones, knowing that they are not guaranteed.

What about non-pharmaceutical treatments? Wouldn't you like to try something more natural?
I would love to, but this is my kid's brain we're talking about, so I'm going to trust his treatment to those who have devoted their lives to studying it. I addressed this in my infantile spasms: 101 post, so I will refer you to that.

So what now?
Now I publish this post, go read in bed, and thank God for another wonderful day. Then I wake up in the morning (and several times in between, because Baby D does. Not. Sleep) and continue to love on my little ones. I know it could take a horribly challenging turn at any moment, but dwelling on that is unproductive. One day at a time.

Good night, friends.

Thursday, March 21, 2019

infantile spasms: 101

In January of 2018, our little dude was diagnosed with a rare seizure disorder called infantile spasms. Since then, our journey has been, to use the appropriate cliche, quite a roller coaster.

For some basic information about infantile spasms from at actual doctor, I would encourage you to check out this 25:00 video. It's a bit long, but it covers everything. The more awareness there is, the easier it will be to get babies diagnosed quickly. It wasn't easy for us to get the diagnosis for our little guy, and I learned that you really do have to advocate for your child. As a parent, you need to trust your gut and push a little bit, even if a doctor tells you she doesn't think it's seizures and you're fine to just keep your normal appointment with your family provider in two weeks. We weren't satisfied with that, so we called a couple of places and found a neurologist who would see us in two days. He watched five seconds of video I'd taken before giving the preliminary diagnosis, which was confirmed with an EEG that afternoon. But I had to push a little bit.

Here are some of the most common questions I've been asked with their answers:
Spasms? Seizures? Which is it? Because it doesn't look like a seizure to me!
Me either! In fact, when we were first trying to figure out what was going on, I called my insurance's 24 hour nurse line looking for help. One of the questions she asked was, "Does it look like a seizure?" Of course I answered no, because my picture of a seizure was eyes rolled to the back of his head and limbs thrashing. Her question got me thinking, so I did a google search for "seizure disorders in infants." It didn't take me long to find this video, which allowed me to self-diagnose. That is exactly what Baby D was doing.

What caused this?
We have no idea. Surprisingly, this is actually a good thing. I can tell you what did not cause it: vaccines or electricity from the baby monitor we used in his room. No joke. Someone told me once that it was the use of electricity in his bedroom, like from a baby monitor. His MRI was normal, which means there's nothing structurally wrong with his brain. Nothing definitive has come back in several rounds of genetic testing and there is no history of seizures that we know of on either side of the family. Babies with no known cause are typically less likely to develop another seizure disorder later in life. Unfortunately, that wasn't the case for our little dude, but what can I say? He likes to be a trailblazer!

What is the process like to get a diagnosis?
If you suspect your child may be having spasms, try to get it on video. I took the video to our first neurologist appointment, and, within seconds, he was able to give us the preliminary diagnosis. We got checked in to Children's Hospital that afternoon, and an EEG confirmed it. When a baby with IS gets an EEG, it shows a very distinct pattern called hypsarrythmia. I'm no doctor, but I can tell that it looks like a mess!

How is it treated?
There are a number of different options, and the one you try depends largely on what your doctor prefers. We started off by giving the baby an oral steroid, prednisone. It helped, but it didn't get rid of the spasms completely. The next thing we tried was a hormone injection: adrenocorticotropic hormone, or ACTH. Giving my baby shots twice a day for seven weeks really sucked, but he stopped having spasms and his brain began to develop again, so it was obviously worth it. Both of these are typically (I believe) used fairly short term. Another option is Sabril, which is often used for longer periods of time. With the two drugs we used for Baby D, there were additional side effects. They were immune suppressants, so he was on antibiotics as a precautionary measure. They elevated his heart rate, so he took medication for that. There was something about increased acidity in his stomach, so he was on something to combat that. Elevated glucose levels, increased weight gain, inability to sleep at night unless physically attached to mama, and general constant crabbiness were additional issues we had to combat with daily tests, constant nursing, and a combination of medications. Not going to lie. It sucked.

What about the ketogenic diet/CBD oil/massage therapy/this other thing I heard about in a TV special?
Yes, these can be valid suggestions in some cases. I have talked to my son's neurologists about keto and the use of CBD oil. Here's the deal:
The ketogenic diet can be used as an effective and natural treatment of seizures in some cases. It's simply another avenue that doctors try, particularly if conventional pharmaceutical medicines don't work. From what I understand, the keto diet takes several weeks to be effective, and the seizures often get worse before they improve. With infantile spasms, quick treatment is key. Baby D wasn't developing, and was even regressing, while he was having spasms. By stopping the spasms as quickly as possible, you are giving your child the best chance to resume normal development. I think I also read somewhere that keto is most effective if the spasms are caused by a certain chromosomal abnormality. I could be making that up, but since that wasn't the case for our little guy, I wrote it off.
CBD oil seems to be the big new thing right now. I'm not a doctor, but when I asked D's neurologist about it, he was adamantly opposed to giving it, FDA approved or not, to a young child whose brain is still developing. He said that it can lead to very serious mental health issues, such as schizophrenia and others later in life. The most recent article I read stated that it has been FDA approved for ages two and up. By age two, a child who formerly had infantile spasms will likely have a new diagnosis if they are still having seizures. Hence the use of the word "infantile". So CBD oil probably shouldn't be used to treat infantile spasms. But ask your doctor. Don't take it from a mom blogger!
So yes, there are a number of natural avenues that can be pursued in the treatment of IS. However, as I mentioned earlier and as the doctor in the video I shared above states, quick treatment and resolution of spasms is key. This is my kid's brain we're talking about. If keeping him on high dose steroids for two months gets rid of the issue, I'm going to try that before I eliminate key food groups and hope for improvement within 6-10 weeks. I appreciate your input and I'm sure your intentions are good, but his father and I, along with a team of very intelligent and highly trained doctors and nurses, have got this.

This seems pretty scary: what can I do to help?
Why thank you. Yes, it is indeed very scary! There are a couple things you can do to help someone who is dealing with an infantile spasms, or another scary medical diagnosis.
#1: Vaccinate. While D was on treatment for IS, he could not get vaccines because the medicine compromised his immune system. His neurologist still advises against it, because his brain is, as he described it, a delicate instrument that we're trying to get in tune. You want to make sure it's solid before you give vaccines, which can cause problems for someone with a seizure disorder. They can not cause a seizure disorder, but someone who already has a seizure disorder needs to be careful. We are depending on herd immunity to keep him safe. I know some people are scared of the negative hype around vaccines. I know you may think you have a good immune system, so even if you do get a preventable disease, you will be able to fight it off. However, if you happen to pass it along to my son somehow, you could be endangering his life. Please keep in mind, if you decide to pass on that flu shot or a tetanus booster, that it is not just your life that you are potentially endangering, but his, as well:

#2: Food. This is universal. Medication made him constantly crabby, which made it difficult for me to get to the grocery store or to prepare food when I was able to make it to the store. His compromised immune system (especially in the middle of winter when this whole ordeal started) made me nervous to leave the house. We were so fortunate to have people regularly checking in on us, picking up the gallon of milk, loaf of bread, or bunch of bananas for us, and even bringing us prepared meals. Friends. Our village stepped up. It made what could have been a true disaster for my mental health into a difficult time, but one we were able to get through. Because we were not afraid to lean on our village.
#3: Company (but only if you're healthy and vaccinated). This time in our lives was isolating, but a time we needed companionship more than ever. We were scared to go anywhere and risk exposing baby D to germs, but we were also experiencing cabin fever to the extremes. To the people who came over and sat and talked or helped make dinner or swept my floor while I nursed an inconsolable child: you are what got me through.

What's the prognosis?
The sooner is it controlled, generally, the better the prognosis. Some kids see a resolution to their spasms quickly and never have another problem. Some (like our baby D) develop a different seizure disorder later in life. Some have longer term struggles as a result of the spasms or treatment of them, such as learning disabilities or emotional and behavioral issues. It depends largely on the cause of the spasms and how quickly they are brought under control.

What's next?
We got D's spasms under control in February of 2018. Then he relapsed in May, we got them under control, and he relapsed again in October. When the ACTH failed to control his spasms by November, we got the news: the infantile spasms were developing into Lennox-Gastaut Syndrome. The bad news: this is a very rare and serious form of epilepsy that is extremely difficult to control. The good news: we have an amazing doctor and we caught this early, giving D the best chance at a normal(ish?) life. We're taking it a day at a time, rejoicing in every victory and refusing to dwell on the setbacks. I mean, there are occasional bouts of wallowing in self-pity, eating ice cream straight out of the carton, and binging Netflix, but the next day I go for a run, make a healthy smoothie, and look for another reason to be grateful. They're not hard to find.

Baby is is raising a mommy who is resilient and grateful.

Saturday, March 16, 2019

when you're in the season of receiving

It's a hard thing, accepting help. It's one I've gotten better at, for sure, but it's still hard. Especially now, when I'm in the season of receiving.

It may seem small to the giver, but it is not. Whether it's a meal (or two meals every week for two months), a grocery run, a text saying "Hey, can I snuggle your crabby baby for an hour so you can go for a run?", a stop at our house-for-sale to shovel off the driveway before a showing, a restaurant gift card, or a store credit set up by friends that leads to these beauties:

It is not small. It is not no big deal. It is wonderful, and it is so, so appreciated. You are so appreciated. We all encounter difficult times in our lives, and I don't know how people get through them without leaning on those around them. My village is the best. That's all there is to it. You. Are. The. Best.

To those who are receiving: It's okay to accept help. It is good to accept help. You are worthy. You deserve it. Don't for a moment think otherwise. (She said, mostly to reassure herself.) Lean on your village and be grateful. And then, when you are out of this season, do what you can to pay it forward.

To those who are giving: Your generosity is more appreciated than us receivers can say. It will not be forgotten. Sometimes you may feel taken advantage of, and sometimes you will be taken advantage of, but please don't stop giving. You are amazing.

Wednesday, March 13, 2019

another update on the baby

Oh friends. What. A. Trip.

Most of you probably see my updates on Facebook and the like, but I'm feeling the need to do something a little more in depth. Our baby, and our whole family, has been through a lot, and I think I owe it to those who care about us and have helped us to keep you updated. Also, writing is therapeutic. Not quite as therapeutic as running, but until I can work new shoes into the budget, that's not going to happen. So I turn to my keyboard.

When last I left you with a baby update, you know, in January of 2018, we were in the hospital awaiting the arrival of our infant son's medication at our home so we could get out. I'd love to say that things have been all rainbows and unicorns since then, but that would be a lie. For back story part one, read this.

On to part two:

The ACTH injections did the trick. We saw our last spasm on February 7th, 2018 and then everything seemed good. In this case, "good" means the spasms went away. He was getting shots twice a day and a whole slew of oral medications every 8 hours on the dot (as in alarm at 2am), so "good" is a relative word. Also, the hormones, like the steroids, kind of turned the poor baby into a monster. He was so chunky and uncomfortable and miserable that all he wanted to do was eat and snuggle. And sleep a little bit, but only in short chunks and while nursing. Obviously, it was a small price to pay for his health, but it was still a difficult time.

We got a couple clear EEGs and followed our taper plan to a T. One Friday in mid-March, toward the end of the taper, a switch seemed to flip. Baby D started smiling and even laughing again. It was a sight we hadn't seen and sound we hadn't heard since December of 2017, so to say it brought tears to our eyes is not at all an over-dramatization.

We started weekly physical and occupational therapy sessions through the school district. At first, Baby D was so chunky that he couldn't handle tummy time. He couldn't turn his head comfortably and lay on his puffy cheek, so we were taught alternative positions. Within a few weeks, he was not only a tummy time champ, but he was rolling in all directions and holding himself up on his forearms. He had a pretty good amount of mass to hold up, so this is an impressive feat!

Memorial Day weekend, things changed. We started to see the spasms come back. In January, when we received the Infantile Spasms diagnosis, Baby was having 4-6 clusters of spasms per day. Each cluster would consist of 15-20 or more spasms and last around 5 minutes. To see what they look like, check out this video. On Saturday, we saw two clusters of 4 spasms each. We called the clinic right away and spoke with the on call neurologist, who told us to keep a close eye on him and call back on Tuesday when the clinic was open. Long story short, we ended up in the hospital again.

Seven more weeks on meds and we saw another resolution, with baby D getting his last shot the day before his first birthday. It was quite a celebration!

This time, he made it nearly two and a half months spasm- and medication-free before relapsing in the middle of October. He was put on a different schedule this time - a shorter time at a higher dose with a longer taper. Initially, things were going great. Just like the last two times, we stopped seeing spasms within a few days of starting medication. We made it through two weeks of two shots per day and eagerly started to taper - down to just one shot per day.

Things were different this time. Baby D didn't regress like he had before. He didn't completely lose his sweet baby personality. He would still play and smile and giggle. He would roll like crazy, and he even started to sit on his own. (Can I get a HALLELUJAH!)

Following the plan, we gave him one shot per day for seven days. Then we skipped a day. Then I took him on a weekend long retreat with me, where he charmed everyone with his smiles. Then he started having spasms again. I called the on call doctor. Go back to shots every day.

No resolution.

Go back to two shots every day.

Improvement, but still no resolution.

After a week and a half of two shots per day, our wonderful neurologist recommended that we get a second opinion. We requested a referral to the Minnesota Epilepsy Group on Wednesday. On Thursday, we were told that there would be a room ready for us at Children's in St Paul on Friday and could we check in between 9:30 and 10?

Of course we could.

Luckily, we have mastered the art of quickly packing for hospital stays of undetermined lengths of time. It's a skill. Not one that I hope any of you ever have the opportunity to perfect, but a skill, nonetheless.

Baby D had a cluster of spasms on Friday morning as we are getting ready to leave, which further cemented that we were doing the right thing and were not, in fact, overreacting.

We got checked in to the hospital, got Baby D hooked up to an EEG, and started to settle in.
I have to insert a little note here to let everyone know that we absolutely loved our doctor at the Noran Clinic. He was wonderful and brilliant and we always felt heard and cared for and knew he was 100% on our side. Should you find yourself in need of a pediatric neurologist, I would be more than happy to give you his information.

But now Baby D has a new neurologist who seems equally awesome. There was something incredibly comforting about being in a hospital with a designated Epilepsy Center. Everyone was on a whole different plane. These were people who worked, full time and then some, only with children with seizure disorders.

We met with the neurologist who told us, among other things, that it looked like Baby D was developing out of infantile spasms and into Lennox-Gastaut Syndrome. Don't Google it. If you do, don't tell me what you find. I know it can be bad.

We (mostly the doctor) came up with a new plan that involved weaning the baby off of the ACTH (yay!) and introducing a new seizure medication with fewer crabby side effects. After a few days in the hospital, we were sent home with a whole new pharmacy to get used to. The spasms went away, the baby continued to progress, and we were so, so happy.

Our next follow up was mid-December, and Baby D looked off the charts amazing. Not at all like a typical LGS kid. It hasn't been perfect or easy since then, but that's the nature of Lennox-Gastaut Syndrome. It's difficult to control, and, with each tweak to the medication, you hope for better. Obviously, you would love to see a complete resolution, but "better" is often all you can ask for.

There have been more hospital stays, more EEGs, more follow ups, more blood draws and labs, more tears, hugs, and all-night snuggle sessions in the last 14 months than I care to count. It has been hard. Sometimes it has just plain old sucked and there is absolutely no other way to describe it. But through it all, we have discovered just how many truly amazing people we know. From meals to hugs to gift cards to afternoons off to sympathetic smiles to prayers and everything else: we have felt the love.

So there you have it. This little chunker is doing amazingly well, and he is raising a mommy who is grateful for every smile, giggle, and crabby snuggle.

From last November when we got our new diagnosis - note the chubby steroid cheeks. While he's still plenty snuggly, he has slimmed down a lot since this was taken!

Monday, September 24, 2018

it's not okay

This morning after I got home from walking my oldest to school, I said to my husband, "I have a bad feeling about today. I just don't like it."

I couldn't explain what the bad feeling was. Or maybe I didn't want to explain what the bad feeling was.

It was completely unfounded.

Except that it wasn't.

How do I know that I won't take my six year old - my beautiful, innocent, intelligent, sometimes sassy baby girl to school one day, kiss her goodbye, and never see her alive again? It happens. Regularly. It's getting to the point that it barely makes the news anymore unless "enough" lives are taken.

Are we okay with that?

And how many is "enough"?

Are we going to continue to think and pray about it? Or is there something else we can do?

Saturday, January 27, 2018

an update on the baby

To say that 2018 so far has been a roller coaster would be an understatement. We have all been pushed to our limits, then pushed a little farther, then either reeled back in by a loved one or pushed over the edge and caught by our amazing support network.

I'm going to give you a basic story, because I'm guessing there are people who are curious but don't want to "bother" us with questions. For the record, they're not a bother. I'm happy to answer your questions. And if I need a break from talking about it, I'll tell you that, too.

On January 5th, our five month old was diagnosed with Infantile Spasms, a seizure disorder. We started to notice some odd movements and a regression of his abilities about two weeks before. Following our parental instincts, we took him to the ER on a Tuesday evening. We were referred to a pediatric neurologist, got an appointment for that Friday, and saw a doctor who gave us the preliminary diagnosis within minutes. Then we were admitted to Children's Hospital for more tests.

Infantile spasms shows up in a very distinct way on an EEG. Someone who knows what they're looking at can tell right away if a baby has infantile spasms, even if they don't actually have any spasms while they're hooked up. He got hooked up shortly after we got checked in at Children's and received the official diagnosis shortly after. They continued the EEG with video monitoring overnight, but disconnected him in the morning for an MRI. Something about removing the metal electrodes from his head before sticking him in a giant magnet. You know.

The MRI looked good, which was a huge relief. While it would have been nice to know right away what caused this, it's always good to hear that there is nothing structurally wrong with your child's brain. It's likely genetic, but we won't know exactly until we get the results of those tests back.

We started a high dose steroid treatment the first night we were in the hospital. The nurses gave him the medication, which he then proceeded to throw up all over Dad. We came to the mutual agreement that it should probably be given in two doses, rather than all at once. Dad was a fan of that idea.

We were released from Children's after one night, so we went home on Saturday. We made it home and went about our lives, adjusting to the "new normal" and relying heavily on our fantastic network. In case you don't know how steroids can affect a person, I'll give you a little insight. For our baby, they made him constantly hungry and crabby. Constantly.

It was all worth it, though, because we saw immediate dramatic improvement. When we first went in, we were seeing clusters of spasms - 15 or more in a 5 minute span, 5 or 6 times a day. Before long, we were seeing 1 or 2 individual spasms over the course of the whole day. Our first follow up with the neurologist was a little over a week later, and he was very optimistic. He said things were progressing great and there was a chance we could be done with the steroids completely in a few weeks and never see this again.

We were still seeing some spasms the next week, so we called on Monday at the request of the neurologist and got an EEG scheduled for the next day. The results of the EEG were, again, promising. There was dramatic improvement and it appeared that the infantile spasms were resolving themselves. He noticed some movements still, but called it a myoclonic jerk and said that it was something we most likely would not need to worry about.

On Friday and Saturday, January 26th-27 th we noticed a dramatic increase in the spasms. Instead of two in a day, he went back to having one every hour or two. I was able to talk to the doctor on call who told us to hang tight until Monday and call the clinic then. But if he had more clusters of spasms, then we were told to take him to the ER. It was about 10:00 on Saturday night when we saw five spasms in as many minutes, so I packed a quick overnight bag and we headed off.

We got to Children's hospital shortly after 11 and were taken to a room in the ER. It took awhile for them to get in touch with the neurologist on call again so they could figure out what to do with us, but eventually, around 7:00 Sunday morning, we were admitted to the hospital to get another EEG. This one looked about the same as his previous EEG, so we were presented with two options: we could increase his steroid dose to reflect his weight gain (that's right - our kid got too chunky for his medicine), or we could scrap it and try our next treatment option. Knowing that the next option was an injection that was extremely expensive and would buy us a few more days in the hospital, we opted for the steroids.

We already had another EEG scheduled for the following Friday, February 2nd. We didn't notice much of an improvement this time, so we weren't overly optimistic. The EEG still showed improvement over his first one, but was about the same as his other two. The neurologist suggested that we move on to the next option. We were admitted to Children's again, and that's where we are now.

He started ACTH injections on Friday night and will continue with those twice a day for at least two weeks. This is a hormone treatment that can cause high blood pressure, so he's on medication to combat that. It can cause high glucose levels, so we are monitoring that. It suppresses his immune system, so he's on an antibiotic, we're washing our hands very frequently, and anyone who has been sick or exposed to sickness is being asked to keep their distance. It causes irritability, but Tylenol seems to help with that. A combination of his blood pressure medication, melatonin, and benadryl are being used to help him sleep. Basically, he's consuming a small pharmacy. And lots and lots of breast milk. You probably see "injections" and think "that must be awful - poor baby!" I won't lie and say he loves them, but he actually handles them better than his oral meds. We put some numbing cream on, and after a quick poke, he's done. He absolutely hates taking oral meds. It's to the point where we're not even thinking of trying a bottle or solid food because he's so wary of anything we try to put in his mouth. Dad actually had to plug his nose one time so he would open his mouth enough to get them in. How's that for awful? 

Now baby and I are just hanging out at the hospital until we know the medication is on it's way to our house. I'm hoping we'll be out of here tomorrow, Tuesday, but I'm mentally preparing myself for longer.

I'm going to finish this very lengthy post with one last plea. Please please please make sure you and your children are up to date on your vaccines, including the flu vaccine. Even if it's only 10% effective, it will help 10 out of every 100 people. Our baby can't get vaccines while he's on these meds, so we're relying on everyone else to help us protect him. The flu that seems debilitating for a few days to a normally healthy child could be life threatening to someone like my son. So don't be offended if we don't want to hang out with you for awhile, even if you are up to date!

This little guy is one tough cookie!