Dear Daddy...

I love my Dad. He has always been there for me and done whatever possible to make sure I'm taken care of. I'm worried about him, I've actually always worried about him. Even when I was a little girl when we lived in New Jersey and he would go out on the back porch to light the grill [I was terrified...I hid under the dining room table]. I wish he knew how important he is to my little family. I wish he would open up more. I also pray daily for his health and happiness. Dad you'll never know what you mean to me or how much I worry about you. You are so very important to me, Dennis, and the kids. You raised a very well educated and smart daughter, you should know by now that you aren't getting anything past me.

Please keep fighting. 

I love you. 

Daddy take me with you 
I promise I'll be good 
Daddy, this is next time 
And momma said I could 

Sittin' in the front seat ridin' down town 
An icecream cone I'd rap him around 
My little finger 
Tighter then my baby could 
You can make a tear go a long long way 
When you're daddy's little girl 

Well he tightened my bike chain from 7 to 13 
Taught me to drive when I was a wild thing 
Reached and he prayed while I made some mistakes 
That I wouldn't have made if I'd have done it his way 

Now he hugs me when he sees me 
We talk about the past 
He tries to give me money 
And I try and give it back 

He's a book of advice 
More then I need 
The look in his eyes is saying to me 
Let me help you all I can 
While I'm still in this world 
What will you do when you're daddy's gone 
And you're daddy's little girl 

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.

Where we are now

I just wanted to post a quick update about my boys. They do such amazing things on a daily basis and I don't want to forget how they were at these ages.

Nolan

• He will be 20 months old in 3 days. 
• His vocabulary is finally growing! He says, thank you, juice, sock, baby, please, buh bye, love you, mama, dirt (he likes to pick the "dirt" from in between his toes after school) and other random small words. I am so proud, especially since he finally passed his hearing test and the cyst or scaring on his ear seems to be getting smaller and having less of an impact on his speech. 
• He is more obsessed with cleaning now than ever. He has recently discovered the duster, he will sneak into the cabinets that have locks on them just to pull out the duster and will dust everything. He will spill milk just so he can pick it up with a wipe. After he eats he likes to clean up his highchair. When he sees trash in the house he picks it up and throws it in the trash can. He's amazing. 
• He currently has pink eye in both eyes and has cream that we have to put on his bottom lash line. 
• He loves his pillow pet and will lay down and cuddle wherever you put it. 
• When he gets in trouble he runs up to you and wraps his arms around your legs to hug you, he's too smart. There is no way I can ever be mad at him when he does that. We are in for trouble...
• Nolan will eat anything as long as I watch him and gasp in disbelief every time he puts said food into his mouth and then clap after every bite. It's almost like a game. I'm into anything as long as it gets him to eat his veggies and fruits. 
• Nolan loves to sleep. He often sleeps until noon, and normally goes to bed around 8pm. If he is accidentally woken up in the morning when we are getting ready he will cry for a couple of minutes and then go right back to sleep. 
• He doesn't like TV. He has no favorite cartoon or character. We put on different toddler shows and he pays no attention, which is great. The only time he will pay attention is if there is singing and dancing involved, that boy loves to dance. I taught him how to booty dance one day and now when he dances he will sometimes stick his booty out and shake it around. Heeeee-larious! 

Kaleb

• He sleeps through the night [SCORE]
• He has finally graduated from ONLY sleeping in his swing to sleeping in his crib.  We start him at the top of his crib and by morning he is at the very bottom. Last night we had a toy keyboard at the end of his bed and he got so low he hit it with his legs and it fell on top of his legs, causing him to wake up. Poor thing.
• His milk protein allergy is finally under control. 
• He has curly dark brown hair that he loves to pull on. 
• His head strength is getting to be amazing, even his therapists have commented on how well he is doing. 
• After he eats he is the happiest baby. He will sit for around 30 minutes and smile and laugh at just about anything. Unlike Nolan he is highly entertained already by the TV. He also loves to stare and coo at the fan, bright lights, Nolan's kisses, and mommy and daddy's faces. 
• He hates poop. Who doesn't? [actually Nolan could live in a poopy diaper] Kaleb will however scream as soon as poop hits his diaper. 
• He has only gained around 3 pounds since he was born and still fits into [most of] his newborn clothes. 
• He turned 3 months old today! Happy birthday baby!

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

Nolan's ENT and Kaleb's smiles

Nolan went to see his ENT doctor today with daddy. He's been going for follow ups since he had multiple ear infections last year and the doctor thought he found a cyst on his ear drum. Today we went in to see if the "cyst" was bigger, smaller, or even a cyst at all. It looks as though it is actually scarring from all of the ear infections and may have gotten a tiny bit smaller which is great! No decision was made as far as surgery or anything today and we will follow back up in 6 months. Phew! I've been really worried about his ears lately especially since almost daily he comes home with a pretty serious injury from falling in class. Last week he got a long, deep scratch on his tummy and apparently he was just standing outside looking at a bird and he fell into the fence. How do you fall if you aren't even moving? The doctor didn't seem too concerned, maybe he is just clumsy.

Kaleb is doing really well. Things are so much more calm and it looks like his special formula for his milk protein allergy has finally completely worked. He has been such a happy baby lately. He smiles so much and he actually smiles in reaction to the smallest fun things like talking to him, playing with his cheeks, ticking his tummy...it's great! Nolan didn't purposefully smile for MONTHS. Kaleb even laughs some when he laughs, too adorable! These smiles are just what I needed...they help remind me that he is a person beyond his special needs and he can do amazing things. He knows what is going on and is very smart. He is really feisty and knows how to get what he wants.  He makes everything just perfect when he flashes you a smile!

Kaleb has OT and PT tomorrow...lets hope he gets through them alright. Last week he did really well with PT but terribly with OT and was actually not able to finish out his OT session because he was so upset. Hopefully tomorrow is a lot more smooth and everything can get done that needs to be done!

Goodbye February

We have a large magnetic white board on our fridge, it's the only way we can stay organized...hell we aren't even that organized now but we are doing a lot better than we ever have! We decided once we started filling it in with February's appointments that we would take a picture at the end of each month, sort of as a way to remember all of the places we've been. It also makes me feel proud, almost like an accomplishment that we have made it through an entire month and everyone is still alive and the house hasn't burned down.

Here's February....

Now that I'm back to work we have to get even more organized. PT and OT are now always on Thursday afternoons. Dennis will go to afternoon appointments and I will go to morning appointments (unless they are super important, like cardiology).

Speaking of, we have our cardiology appointment tomorrow. Supposedly this is when we find out if Kaleb will need surgery on his little 9 week old heart. They would close up his PDA (extra valve that should have closed right after birth), this condition causes a murmur to be present which doctors can hear. A couple of weeks ago one of K's specialists said he could hear the murmur...I wasn't really holding out hope that the PDA would close itself in two weeks. But, this week at another appointment a different doctor said he couldn't hear it. Now I'd like to get my hopes up that his PDA magically closed itself, but Kaleb was screaming at the top of his lungs during this exam and I don't care how educated you are,  I'm pretty sure it's hard to hear anything other than crying during one of those fits. Not to mention an emergency room doctor missed it over a month ago and clearly it was still there. Oh well, tomorrow the question of the day will be... 

PDA or NO PDA? 

Goodbye...

...POMPE'S disease! We found out yesterday that Kaleb doesn't have Pompe's disease. THANK GOD! I'm very rarely religious BUT I felt this was the right situation for some sort of "religion". I knew it was nearly impossible for him to have Pompe's (which is VERY serious for infants) however, we are very used to rare disorders, diseases, and situations. It feels good to win a battle over something so rare for once.

I still remember when I was 21 weeks pregnant and our genetic counselor told us we "won the lottery that we never wanted to win". Since then we have started playing the lottery ;)