max's immune deficency.

Hi, all. I am writing this tonight so that our family and friends can have a better understanding on what has been happening with Max.
Max has been diagnosed with primary immunodeficiency. What this means is his immune system doesn't function properly, if at all. Max has been consistently sick with different infections his whole life. His first year was marked by repeated ear infections, his second and third by sinus infections that, up until a few months ago, we were able to treat with repeated antibiotics. His last infection has been resistant and unable to clear. A few weeks ago he saw the infectious disease specialist that did a full work up and found that his IGG level, an antibody that protects against viral and bacterial infections, was significantly low. Further testing revealed that he was not making antibodies to his vaccines. This is significant in that the vaccines he has received so far are not protecting him against diseases, but moreso, his body is not making antibodies to other bacteria or viruses he has encountered. It explains why Max is always sick. I am counting my blessings tonight that this was discovered by Max's pediatrician at a point where Max's illnesses have been self-limiting and not the type that could have made him much, much sicker.
I'm sure everyone's child has had a cold, ear infection, or sinus infection in their first years of life. The difference is their body is able to clear it up on its own or with antibiotics. With Max it would clear for a very short time, usually 2 weeks, and then return. These last few months it has been unable to clear. He also has a big scabbed up scrape on his tiny ankle that started from a new pair of sandals he wore in August. Four months later, many tubes of hydrocortisone, boxes of band-aids, and kisses from me later, it will not heal. All of this was his bodies way of showing us that it could not heal itself.
Treatment for Max will be immune globulin replacement therapy.  He will be getting blood transfusions with the fraction of plasma that contains immunoglobulins (antibodies). Since the blood is only replacing what he should be making and not correcting the problem it will only provide him temporary protection. Consequently, he will need these transfusions every 3-4 weeks. If we are lucky and this is something he outgrows, he will be doing this for 1-3 years. Otherwise it is necessary for Max's whole life.
His treatments will likely be at Mary Bridge or Children's. They last 2-6 hours, sometimes half a day depending on his body's response. Most patients have no side effects from the procedure but feeling sick afterwards is expected.
Even with treatment, Max will be more susceptible to infections and more ill then his peers when an infection develops. But the treatment itself should improve his health tremendously and most importantly protect him from so many scary things out there.
As his mom, it weighs on my heart to hear what he will have to go through in this next year alone. The blood draws he has had in the last few weeks have given him an emotional beating. He went to get his haircut the other night and melted down in the airplane chair, thinking he was going to get poked again. For me, the hardest part to get over is the emotional aspect of the repeated needle sticks for him (and for his dad, anyone who knows Geno knows he will faint just reading this last paragraph about needles.)
I am thankful that this was found and something we are able to treat. I wish that the treatment wouldn't be so much for his little self to endure. But thankful all the same that is something that has a treatment. A gift that not all families faced with diseases are given.
One of the truest quotes I have ever read is to have a child is to decide forever to have your heart go walking around outside your body. And tonight my heart feels heavy. But just as in everything else we have come across with these boys...an emergency birth, hospitalizations, Luke's time in the NICU...no matter how hard it is in the moment, it always gets better. And so will Max.

swim lessons for max.

This week Max started his first-ever swim lessons. Our brave, fearless Max. Our super social toddler that is quick to wave goodbye to his parents to join the other kids. This would be a piece of cake. 

Except...

Max wasn't a fan.

I did hear a few half-hearted "whees" come from him when his swim instructor dipped him,

 but they were lacking enthusiasm.

He spent most of the time trying to lock eyes with me, repeating "I want daddy" over and over. 

He was referring to me, Max calls everyone daddy right now...

but this made it easier to look around with the other moms and whisper 

this kids daddy should really go get him out.

Fruit snacks brought the smiles back.

He was much happier wading his little toes in the little pool.

And even made some friends.

But in true Max fashion...

Once he saw big brother start his swim lesson,

He wanted to be there too. 

Can't you just feel his longing in this picture? 

Heart breaking.

I spent the rest of the day chasing him away from the big pool.

max.

it's friday. 

i'm fresh from the barber shop and lookin' GQ. 

borrowed my brother's car for the weekend. 

the suns out. 

and i'm cruisin' around town with the top down. 

what could be better? 

maybe if i could somehow get this obnoxious license plate off...

Mornings with Max.

Mornings with my little firecracker. Leave me ready for a nap by 10 am. When we have somewhere to go in the morning his favorite game to play is lets run away from mom while she's trying to get me dressed. And at 35 weeks pregnant, this game isn't very fun to play. I find myself plopped on the floor surrounded by his clothes and shoes watching him running away giggling and squealing. Having used up all my energy for the day going up the stairs to retrieve the clothes, I stay planted there, uselessly trying to prod him back. Sometimes Noah will drag him back for me. Sometimes I will chase him down. And sometimes he comes back doing something like this morning, leaving Noah and I in stitches. Half dressed, he emerged from the laundry room with his brother's snow hat on. He was still playing his game. Running away from me at every turn. But at least he looked stylish playing it.

Croup

Max has Croup.

Croup is a winter virus that causes swelling around the vocal cords and a characteristic barky cough. Mild croup can usually be managed at home, but the RSV Max was hospitalized for as an infant damaged his lungs, and causes him to struggle a lot more than the norm with respiratory infections. Saturday he developed harsh stridor, a high pitched gasping sound when he breathes. I should have taken him in right then, knowing he would get worse as the night progressed, but got some bad medical advice from the Dr. on call. This guy.

He diagnosed him as having the "acheys" and then informed me he had a temperature of 5.

Concerned for hypothermia he made the decision to amputate.

Later on when Geno got home from a training he was teaching, I took Max to the clinic where they confirmed Croup and put him on steroids (and no Uncle Cub, these steroids only help his lungs - it is not the time to start him on a weight training program). The steroids were like a venti latte for Max and he was pretty wired the rest of the evening. Wired and a big, hot, emotional mess. By this point he had been up since 4 am the previous day and showed no signs of heavy eyes in his near future. After bedtime came and went it was clear his symptoms were worsening and wouldn't be sleeping. So grandma came and stayed with a sleeping Noah and we headed down to Marybridge. Whose ER, by the way, was recently remodeled and it was impressive. Not enough to make anyone want to spend their Saturday night in the hospital, but the previous ER waiting room was not a pretty sight. The childrens and adults were combined in one room, which meant bouncing your wheezing infant while keeping one eye on the lovely gentleman next to you intoxicated and singing to his invisible friends. The remodeled version boasted a built in fish tank, a flat screen playing cartoons, and no drunken serenades. It was like the Motel 6 burning down and being detoured to the Hilton. You get the idea. Back to Max. The hospital visit was far from a hotel stay for him.

I took 3 pictures of him during our 3 hour stay, during the 3 minutes he wasn't crying. He cried the other 2 hours and 50 minutes (yes we were counting) straight. He was just that miserable.

But he looked adorable in his hospital gown.

His Croup was moderately severe and his Dr said he was panicking because he felt like he couldn't breathe. A very scary feeling. The Dr. compared it to being in a gas chamber, something he used to treat kids for in the military. Pretty sure Max won't be enlisting anytime soon if he has flashbacks of this night.

They treated him with racemic epinephrine to decrease the swelling and more steroids. He got to go home where he didn't sleep but was more comfortable. Today his diet consisted of ice cream and otterpops, which brought him smiles.

Right now he's camped out next to me on the couch while his brother is slumbering away. I think we're in for another really long night. Look for my husband on the roads tonight at 2 am. Last night he logged 110 miles on our new van trying to subdue him to sleep. Pretty sure he's glad we opted for the heated seats now but I don't think I'll remind him of that tonight.

Bowling with Max

{The very first time Max tried bowling, he was a natural. He shocked me by instantly knowing the correct way to hold the ball. I didn't think you transitioned from bowling through your legs until you were in your teens...but in hindsight, maybe that was just me. Max bowled amazingly well and I thought I would post the evidence here. Sadly, today's round wasn't nearly as graceful. Now I am full of second thoughts on the bowling league I signed him up for.}

He was really excited to bowl today.

And then his alter-ego came out. This look should have warned me of the violent bowling session that would ensue.

Calmly setting up the pins.

Chanting his usual pre-bowl mantra of "ready, set..."

He took a backswing

And then, proceeded to pound the pins into the ground over and over until I intervened for the life of the hardwood floor.

His career as a professional bowler has been put on hold temporarily.

My Dr Jekkyl of bowling

Has been replaced by Mr Hyde.

He's Two.

He's sweet. And little. He spends his first hour of waking curled in our laps, cuddled with his blankie, in a warm state of half asleep. He's big. At least, he wants to be big. He follows his brother and friends from room to room, from adventure to adventure, a little the outcast but trying with his might to be included. He's crafty. Quick to smuggle a piece of chalk, a marker, or crayons. He carries it in his little hand and the world is his canvas (the proof is written all over my walls). He's an entertainer. Smiling his big toothy grin when anyone comes come over; quick to jump and dance for you on command. He's wild. A climbing, roaring, exploring little boy. The definition of Max from Where the Wild Things Are.

He's two. Somewhere in the middle place of baby and boy. A small little person that's big in our family. He changed me, the day he was born. Coming into the world in a scary, emergent, heart stopping way. And has shown me since then, what a gift I was given. Two years ago this day.

And I'll always be thankful. For my boy that is two.