Goodbye

If ever there is tomorrow when we’re not together...

there is something you must always remember,

You are braver than you believe,

stronger than you seem,

and smarter than you think.

But the most important thing is,

even if we’re apart...

I’ll always be with you.

-- Winnie the Pooh

This has been a pretty rough weekend. Beginning Thursday night Kaleb started waking up in pain, reminiscent of the days before we knew he had a milk protein allergy and his intestines were bleeding. It hasn't gotten any better, only worse. We aren't sleeping. We stayed up until 3am this morning trying to get him to go to sleep [he normally goes to bed around 11pm and sleeps a full 8 hours]. We finally got him to sleep about an hour ago and that is the most he has slept in the past 24 hours. Poor thing . We took him to the doctor yesterday because he also had a fever of 102. With all of Kaleb's issues we can't risk it to say "ehhh it's just a viral thing" or whatever. You never know what could happen. They thought he may have a UTI but he was all clear so the doctor [not our normal doctor] just wrote it off as a virus or something. I tried to tell her he was in extreme pain at times, but obviously you can't get a diagnosis off how high pitched a cry is. I wish you could. I suspect there is something going on with his kidneys and ureters [remember-- his ureters are dilated which may indicate a blockage]. We weren't able to get in to see the Urologist until April 19th so until then we have to hope that his ureter issue isn't serious [stupid doctors]. We monitor his temperature almost too often and make sure he is doing all of the other things he's supposed to be doing. Our regular doctor is back tomorrow so we may take him back then since she knows all of his diagnoses [plus maybe she can wave her magical pediatrician wand and get us into the Urologist sooner...maybe?]. 

After the doctor's visit I was so drained. We waited forever for Kaleb to pee in his bag after they "bagged" him and were there past closing time. While we were at the doctors office I got a call from my aunt. I was hoping she was calling me back since I had left her a message earlier in the week and wasn't calling to tell me that my cousin passed away. I just knew she was just calling me back...but I was wrong. She told my my dear cousin, Patti, had passed away the night before. This was something we were expecting but that never makes it easier to deal with. Patti was diagnosed with breast cancer nearly 10 years ago and since then has battled cancer throughout her body. I found out the day after I had Kaleb, while I was sitting in the NICU that her cancer had spread to her brain and there was no more they could do for her. She was put in hospice, could not really communicate anymore (I couldn't even call her to tell her how much she meant to me once I found out and tell her I love her one more time), and she was only given a month to live. I was devastated. She's made it through so many treatments and battles and always had a smile on her face. She was the most positive person I have ever met and I mean that in the deepest way. She was giving and beautiful and so very caring. When we would talk she always asked how I was, how was my family, was I okay....she didn't fret and always made sure others around her were alright. I don't think this sort of thing should happen to anyone, but it's so frustrating that it happened to this person, she was truly one of a kind. The last time I saw her I was pregnant with Nolan, she was so supportive and offered to throw me a wedding shower. She has been a constant strength for me when it comes to issues with my dad. That's another thing. My dad and Patti were VERY close, I would venture to say they had a closer bond than him and I do. Recently my dad hasn't been able to talk about Patti without breaking down or getting upset. So naturally I worried about him, not only that but he's very sick these days. I worry that her passing is going to negatively affect his health. Patti was always there for my dad. I hope she knew how much that meant to me. I constantly have people checking up on my father to make sure he is okay, and with her I knew she would talk to him nearly daily and if there was a problem she would call me or get him help. I always knew I could call her and talk to her about my concerns about my "family" issues [I'm pretty secretive about those] and she always made me feel so much better. Thank you for everything you did for everyone Patti. We are all so lucky to have you in our lives, we are so blessed. Please watch over my family, especially Kaleb and show him to be as strong as you were through all of the ups and downs he will go through in life. I <3 you. 

 She LOVED the beach. 

Aunt Nancy, Uncle Bill, me, Patti, and Dad

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