Drum roll please, the results are in.

My title is probably mostly misleading. Normally you have a drum role when you are awaiting something exciting, perhaps finding out the sex of your unborn baby or getting ready to find out who won in a really rewarding game. Well my drum roll is a little less enthusiastic, probably why I didn't use exclamation points [also probably why I'm letting Nolan pull down everything from my photo album shelf and throw my makeup all over the place]. I'm just blah today.

This morning I got a call from Dr. Weatherly. I had to pause for a few moments because he didn't identify which specialist he was, and honestly I can't remember all of them at this point. Once he started talking about K's sleep study I realized he was our Pulmonologist. He said that he got our sleep study results back today. One of the biggest things I've learned through this journey is that doctors do not call you unless there are concerns. He said that Kaleb's oxygen levels went pretty low at night and he does in fact have sleep apnea. He told me he wants us to go see an ENT to see if there is any tissue blockages and then if not Kaleb will need to go on Oxygen.

I know sleep apnea is not rare and very common, mostly among older men. My son is only 3 months old. I also realize that sleep apnea is very common among Trisomy babies, I sort of already expected this. But at the same time it's hard to hear something is "wrong" with your baby. Especially when there are a lot of "wrong" things with your baby. I know parents that cry when their baby have their first ear infection [I'm definitely not knocking those parents, trust me...I was a wreck through most of Nolan's ear infections, I'm pretty sure they affected me more than they affected him]. When an ear infection is the worst that your kid has had, it's pretty hard to get through. Just imagine if you continuously have new illnesses that come up on a monthly basis, and each one is just like the first ear infection was. Every new diagnosis is scary...we don't have information up front and we worry a lot. What new doctors will we see? Is there surgery involved? Will he need to be in the hospital? Is this going to cause him pain? Will he outgrow this diagnosis or will he live with it forever? How will this affect is life? How will this affect our lives? How much will insurance pay for? Those are the normal questions for us.

Anyways, we are going to Nolan's wonderful ENT, Dr. Kosko next week to see what's going on with K's little nose [the cutest little nose, with a very slight birth mark on it]. I actually look forward to that appointment...I look forward to any appointment that is supposedly going to give us answers and a treatment plan.

On another note, Nolan has been home the past two days with some [nasty] pink eye. Ew gross. He is finally going back to school tomorrow. We were given this scream that you have to line on the bottom of his eye where his lower eyelashes are. The doctor swore those are easier. I disagree. A lot. It's very goopy and Nolan hates them. The stuff gets stuck in his eyes and probably irritates them even more. It's very hard to get a straight line on a flailing toddler. It's almost like putting eye liner on while in a moving car, it just doesn't come out very well.

Here I am!

Happy, to let you know
You make me glow
I feel so good, it's true
So glad that I have you
You love me so
Now all is bright

I'll always thank you for the glow
And thank you for the joy
Thank you for the love you give to me
I'm glowing, glowing inside
With your love shining through
Thank you for everything you do
I'm glowing inside because of you 

~Nikki Gil

Things have been so busy lately, I rarely find time to even get online anymore. Somehow I managed to get out of bed early this morning even though both of the babes are still sleeping [seriously, babies that sleep through the night and most of the morning are a gift from GOD!]

Everyone is doing well. Nolan has been a little under the weather this weekend but I think it might have to do with teething, poor baby. When I picked him up from daycare on Friday he was curled up into a ball on a big pillow with other kids running around him and having fun. Apparently he wasn't himself that day but didn't have a fever until we got home that night. My heart broke for him when I saw him on the pillow like that.

Kaleb had his sleep study on Friday and only one of us got to go with him, so Dennis volunteered. From what I hear it was hell. Kaleb screamed for most of the night. I get it though, they had him hooked up to so many machines and monitors. They even had a bandage wrapped around his head to hold all of his head monitors on, poor thing. He finally went to sleep at 1am and woke up around 4:30am. They let them go early at 6am so I think that means they were able to get enough data. We have our appointment with our doctor that referred us there [for the life of me I can't remember which specialist that was...the sleep guy?].

Kaleb also recently had a spinal ultrasound to see if he had anal stenosis. We finally got in with his surgeon to get the results. He said everything was normal [when is it not?] BUT...he has dilated ureters. Our ureters are the tubes that go from the kidneys to the bladder. He said that is not his area so he can't give us any information on that but we need to talk to the doctor that referred us to him [I think it was Kaleb's GI doctor?] and see if we need a Urologist referral. Joy...another specialist to add to the list. We actually saw our pediatrician a few days later who also got the results of the spinal ultrasound so we just asked her for a referral, she always knows the best doctors. So we have our Urologist appointment set for April 19th. Apparently dilated ureters normally means there is a blockage somewhere in the tube that is making it expand, this can cause a lot of pain. Maybe...just maybe we finally found the source of Kaleb's pain. Maybe we aren't crazy after all? [okay, we are still crazy].

Another new thing that happened last week is that Kaleb began going to daycare with Nolan. He is no longer at UCP (special needs daycare and charter school). They somehow forgot to mention when we signed up that when the charter school has spring break (week off), Christmas break, summer break, any school holiday the daycare is also on the same schedule. Which means we don't have daycare for weeks at a time. Tell me again how that makes sense? I need daycare because I need someone to watch my child during the week. If I could just sit at home with my kids don't you think I would be doing that and not paying you to do that for me? So now the boys go to school together and it's so cute! The infant and toddler room are next door to each other and apparently when Kaleb cries, Nolan goes to the door between the two rooms and points at the infant room to tell people to pay attention to his brother. Nolan only does this when Kaleb cries, how cute is that? Also, if he sees other children trying to play or touch Kaleb, Nolan becomes very protective and yells no at them and tries to push them away from his brother. We always knew Nolan would need to be protective of Kaleb (especially during the mean school years) but who knew it would begin this early? Many people have said negative things about us having children so close together but I absolutely adore it. Nolan is such a great big brother and it's so much fun watching Nolan trying to take care of Kaleb. When Kaleb cries, Nolan hands him his pacifier [which he actually hates but Nolan doesn't need to know], when Kaleb spits up, Nolan hands him a burp cloth [okay he actually shoves it in his face and we have to save Kaleb from being suffocated but we know it's out of love], and when Kaleb is in his rocker, Nolan grabs his ball toy that we use in therapy and shakes it all around to play with Kaleb. Nolan is such a great little person.

Now for some recent photos!

He's pretty dramatic, at all times. 

My #1 stunna

Look at those baby blues and the lashes! To die for! 

 

 

Best buddies