My Nolan

I think everyone should know that Nolan thinks his name is "MyNolan". I guess it has to do with me always calling him my Nolan...because well...he's MY Nolan. This has nothing to do with my post but it's the title so I figured I would tell you.

So if you ever hear Nolan tell you, "My Nolan wants milk"...now you know what he's talking about.

This post really is just about the funny things that Nolan says. So I'm going to try to keep a running list during the day and then post at the end of the day. Unfortunately, I just got this idea so I only have one so far. But one is better than none, especially when it has to do with my Nolan. I want to remember these moments and these conversations, because if you know me...my memory hates me.

Nolan: Playing loud music and singing in his mic on his new keyboard
Nolan: Mommy dance and sing.
Me: I can't anymore because my head hurts.
Nolan: Let me fix it. He then proceeds to hit my head several times.
{note: We recently got a new puppy and named him Tucker.}
Tucker: pees on the floor
Nolan: Mommy, look at [what] Tucker did.
Me: goes to look
Nolan: is peeing next to Tucker's pee spot
{maybe one day I can look back on this and laugh, until then...I'm just annoyed}


Kaleb's Song

The other morning I was driving to the hospital thinking that Kaleb was about to have his bone marrow aspiration and I was really worried. I heard this song for the first time that morning and I started crying. It fits Kaleb so much and has some funny parts...just like Kaleb. :) He is truly a fighter and has been through more most adults have been through in their lifetime. 

Fighter - Gym Class Heroes

Just waking up in the morning
And to be well,
Quite honest with ya,
I ain't really sleep well
Ya ever feel like your train of thought's been derailed?
That's when you press on - Lee nails
Half the population's just waitin to see me fail
Yeah right, you're better off trying to freeze hell

Some of us do it for the females
And others do it for the retail

But I do it for the kids, life threw the towel in on
Everytime you fall it's only making your chin strong
And I'll be in your corner like mick, baby, til the end
Or when you hear a song from that big lady

Until the referee rings the bell
Until both your eyes start to swell
Until the crowd goes home
What we gonna do ya'll?

Give em hell, turn their heads
Gonna live life til we're dead.
Give me scars, give me pain
Then they'll say of me, say of me, say of me
There goes the fighter, there goes the fighter
Here comes the fighter
That's what they'll say of me, say of me, say of me,
This one's a fighter

And if I can last thirty rounds
There's no reason you should ever have your head down

Six foot five, two hundred and twenty pounds
Hailing from rock bottom, loserville, nothing town

Text book version of a kid going nowhere fast
And now I'm yelling "kiss my ass"
It's gonna take a couple right hooks, a few left jabs
For you to recognize you really ain't got it bad

If you fall pick yourself up off the floor (get up)
And when your bones can't take no more (c'mon)
Just remember what you're here for
Cuz I know Imma damn sure

 Dennis' work has been so supportive, I almost fell out of bed when I saw this. <3 you all

Kaleb's second hospitalization, EEG time

The morning of Kaleb's third admission, he was breaking my heart. 

The rash that sent me over the edge and straight to the ER, doesn't look so bad here. 

One of my closest friends, Janet, showers us with treats when we are inpatient. Not sure what I would do without her in my life. So sad she and her family have moved to Lake Tahoe, we miss them terribly. 

This is what exhaustion looks like. 

Look who's pulling up to his knees!

My bestfriend's mom took such good care of us by sending us this HUGE basket, yum!!

Kaleb had a few visitors, this is Terra. This was one of Kaleb's bad days so he wasn't too happy with anyone holding him but Daddy. Thanks Terra!!!! <3

Sponge bath complete and found a high chair int he hospital to feed solid foods. Hooray! 

Kaleb, you keep fighting and proving all of the doctors wrong. Please show some of your cards though so we can get an explanation for your blood issues. I love you stinky butt. 


Inpatient #3

Kaleb has been admitted to the hospital three times in the past four months. I've always felt so "lucky" that Kaleb has been relatively healthy compared to other Trisomy or T9 kiddos. Unfortunately, Kaleb's medical conditions are just harder to understand I guess. He has really been testing the doctors at the hospital and his own specialists. It's odd to see doctors scratch their heads and literally tell you, "I don't know". Doctors are supposed to know everything, right? Right!

Here's a look at Kaleb's hospitalizations...
Taken to ER for swelling in both of his legs and high fever (104ish).
Labs were completed and it was found that Kaleb was severely anemic and had inflammation in his soft tissues
A bacterial infection was found however could not be located or determined which bacteria
The source of Kaleb's bleeding (anemic...losing blood from somewhere) could not be located.
Inpatient for 6 days
During this time it was found that Kaleb's bone marrow was not making enough red blood cells to keep up with the "blood loss"
Kaleb received his first blood transfusion

Taken to pediatrician for 5ish days of vomiting and diarrhea and told to go to ER
Went to ER, labs were done and found that Kaleb was severely dehydrated
Kaleb had lost around a pound and a half
Kaleb was inpatient for 5 days
CBC came back normal, no anemia or other blood concerns

Taken to ER due to fever, swollen legs, and red-hot areas on legs
Labs were done and Kaleb was found to be anemic again
Kaleb's white blood cells, hemaglobin, hematocrit, and platelets were also ALL LOW (weird!!!)
Kaleb was moved after a day to hemtology/oncology floor due to concerns of Leukemia
Kaleb's bone marrow is not functioning properly again
WBC's don't look right
Bone marrow aspiration and biopsy completed, does not appear to be Leukemia
Doctors are completely stumped however promised me to continue care and find an answer

After these hospital stays I'm worn out, confused, sad, worried, and hopeful that an answer will be found. Kaleb's blood counts are all over the place on a day to day basis. When his blood counts go up or down every day, they go up by a lot or down by a lot. No in between. We will be following up with Kaleb's hematologist (an amazing man!) monthly, and will continue to get results from the biopsy, aspiration, and blood work throughout the next couple of months. Kaleb has stumped all of his doctors along with the pathologists that are trying to come up with results. These are the people that should know the answers, this makes me feel like I have even less control because how can I help my baby if they can't even help him?

I'm looking forward to some answers and ways to treat whatever is going on. For now Kaleb has an unknown blood disorder and I'm hoping that it's not something that can really hurt him or that needs to be treated immediately, like most blood disorders.