Tomorrow

Tomorrow is my little man's 1st birthday, and I find myself thinking back to the days before and after his birth.
I just can't believe it has been year.

I remember laying back in my chair while I was pregnant, and feeling him move and just KNOWING he was the most amazing person. I talked to him, rubbed my belly, and thought about him constantly. Wanting to see him so much, but scared, too.

The day he was born, I had so much hope, but I was so worried. It felt right to hope, I felt like everything in the end would be okay.
After he was born, it was a struggle to maintain my composure. I remember the second night in the hospital, I was a mess.
But it still felt right to hope.

That first week after he was born was an incredible experience, one I never wish to repeat, but at the same time I'll never regret it. So much was out of our hands. If you know me, you know one of my biggest flaws is my persistent need to do everything myself, no matter how much I'm over my head. It was so hard to be unable to do anything.

5 days after my c-section, if anyone had been around to see, they would have thought I was crazy. I did laundry and cleaned the kitchen and bathroom floors on my hands and knees, just to have something to do. I wasn't cleared to drive just yet, so I couldn't go to the hospital to see Evan while Carl was at work. But by golly, I was going to accomplish something.

And now, a year later, I have my hands full, and my heart is happy. Evan has overcome more obstacles than most people will ever experience in just his first year. What can I say? He's my hero, he is my inspiration, and I know that my life is forever enriched by having such an amazing child.
I cant help but think I am incredibly lucky to be given the opportunity to raise him, to love him, and to see him grow up. Everything we've been through, although difficult at the time, has been just a side-note in comparison to the great pride, joy and admiration I have for my son.
He makes every day just a little brighter. Who could ask for more?

The work thing

Ever since Evan has had his trach removed, I have been looking for work again. It has nearly been a year since I left work (when Evan was born), and I have gotten to spend 4 months at home with him, one of which was without a trach or oxygen.
We've been very fortunate to get by on just my husband's income, but the financial crunch is starting to hurt a bit.
So I've placed my application with a couple of good leads, and hope for the best.

I admit that the thought of putting Evan in daycare is both exciting and nerve-wracking for me. Exciting, because he'll get to experience new things, to see other children on a daily basis, and have the opportunity to learn new things under the guidance of others. It's nerve-wracking because I barely want to leave him in the care of anyone else, including family. I'll miss my boy, and miss the time we spend together daily.

For myself, I have mixed emotions, as well. On one hand, I will really enjoy the mental stimulation of working again. I miss the interaction with others and the feeling of accomplishment at the end of a good day's work. On the other hand, OH WOW I'M GOING TO MISS BEING WITH EVAN SO MUCH!

The main thing that helps me is that lately Evan has been indicating he wants to explore more of his world, rather than be content to let it come to him. He wants to be picked up and walk around the house. He enjoys our trips to therapy and the doctor. We took him to the grocery store for the first time this weekend, and really enjoyed all the new stuff to look at and observe. He wants the stimulation of being somewhere new or previously unexplored.
So I think he will enjoy the new experiences in daycare, although I know he will miss me too. It will take some adjustment on both our parts.
But it will be well worth it in the end.
The main reason we stay at home all the time (beyond trying to prevent him from catching something) is that we're so broke every week. Even a trip to the zoo is outside our price range. Besides, it's so incredibly hot outside that taking him to a park, even early in the morning, is out of the question.

But when fall comes, with cooler temperatures, and me warning a steady paycheck, we look forward to being able to DO things again.

In other news, my little sweet pea has another surgery scheduled for August 14th. It's to repair his inguinal hernia and undescended testicles.
It should only take the day for him to recover enough to come home, so we're not anticipating staying at the hospital for more than a day, possibly overnight.
The good news is, this just might be the last surgery! Unless something happens when we remove the g-button, and it needs help closing, I don't foresee any other surgeries, minor or otherwise.

We are getting ready for Evan's first birthday, just a week and 1 day away. We have so very much to celebrate. Although I will never remember his birthday without reliving those fearful first days when we weren't sure I'd he would pull through, it can never overshadow the fierce pride and love I have for him, and the remembrance of how amazed I was seeing him for the first time. He's simply the most amazing person I've ever encountered. :-)

His actual birthday party will be at my grandparent's in my hometown 2 hours away on August 5th. I am looking forward to showing him off a little. No wires, no oxygen, no ventilator, and only the feeding tube.... It's going to feel good to have him adored by family, just like any other child.
It's been a long time coming.

Still working on it

After working so hard and seeing success with eating, it seems like we've gone back to square one on Evan's eating skills ever since the trach was taken out.
I knew it was possible that he would be more sensitive about it, since he is functioning at 100% taste-wise for the first time since he was 3 1/2 months old. But it's still disappointing.

Oh well, I said. We'll get there. Instead of trying yet another day of insisting he take a spoonful of baby food, I dumped some puréed bananas on his tray, gave him a spoon with a little on it, and said "Let's PLAY!"
And wonder upon wonders, he actually managed to taste some and feed himself a spoonful. It was more accident than intent, but I'll take it.

He also is showing off some MAD standing skills. :-)

Just two weeks and two days until his 1st birthday. Time has flown by.

Trach is gone!

Buuuuuuhhhh-BYE trach!

We were able to take his trach out Tuesday morning. We tried Monday afternoon, but failed.
Our hopes were a little low Tuesday because of how the previous afternoon had gone, but we felt it was worth trying again. And when we tried, he amazed us all by doing spectacular!
The trach came out, and he not only was doing great without it, he required NO oxygen!

We spent the next few hours on pins and needles, hoping nothing would go wrong- and it didn't! He coughed and cleared his secretions himself, like he was supposed to, and maintained his saturation levels. The only "problem" is that he now spits up a little easier when he coughs sometimes. But as time has passed, the frequency of his spitting up has lessened.

So we spent the next 48 hours in the hospital, just monitoring his progress. By Wednesday afternoon, I just knew he would continue to do fantastic.
I was with him every hour, with the exception of getting a meal, or picking up Carl after he came home from work. When I took him home in the evenings, I would grab a shower and head back up to the hospital for the night.

Evan really enjoyed all the attention from the nurses, respiratory therapists, and therapists that had taken care of him before. We had a lot of them stop in to visit and to see how he was doing. They bragged on him so much, I could tell he was just eating it up. He was mostly happy for our stay, with a few exceptions, but he really did wonderful all around.

We were discharged Thursday afternoon, and came home. Both Evan and I were happy to be back, and Carl was happy to have us at home once again. We all slept a lot easier last night, being together again.

So now that we have no trach and no oxygen, we're planning on having a blast!

Oh, I almost forgot- we also got rid of the helmet two weeks ago. So the only "equipment" he has attached to him is the g-button. Love it!
Next, we're going to work on this whole eating thing. :-)

Speech therapy

We get every other therapy- occupational therapy, physical therapy.... But we keep striking out with speech therapy!
In addition to the frustration of having a child who is.... Let's call it temperamental? Yes. Having a child that is temperamental about eating orally in the first place, I also have to deal with the fact that the clinic we go to for every other therapy can't seem to get him on speech therapy because of insurance.
So we went to the clinic at Baylor on Dallas.
4 1/2 hours later, we're no better or wiser as to what to do in order to get Evan to eat.

And you know, I'm not even THAT frustrated about that aspect.
What I am frustrated with is the therapists remarking not once, but twice how "different" he was.

Yep. Believe it or not, but after 8 months in the hospital, and almost 3 months home working my butt off trying to get him where he is at currently, I am aware my son is different from other babies his age. I don't need a running commentary.
I'm sorry that it is surprising to you, even though you are working in a profession that SPECIFICALLY deals with "different" children. Heck, I even was required to fill out 20 pages of questions regarding his differences a month prior to this appointment.

Let's put that aside, and discuss how you stating how different he is made me feel. Obviously, it irked me, because I've been dwelling on it for the past 5 hours.
But beyond that, it instantly makes me worry that somehow MY son is so much different from your usual "different" children that you feel the need to remark on it twice.
I resent that worry.
I have enough on my plate. I don't need to worry unnecessarily.
If you have a major concern about something I haven't already mentioned about his myriad of conditions and delays, please say it clearly.
If you have an ill-defined hunch that something is wrong beyond what I know, please feel free to examine him further, ask questions, etc. If you fail to confirm any suspicions, keep that vague hunch to yourself until we know more. But don't just spout off a general "he's different" with no further explanation.

Whew. Good to have that off my chest.

So, after all that.... Evan's doing fabulous. :-)

Just some thoughts

If you're looking for more adventure in your life.... Have a kid.
Children are small, demented little maniacs that seem willing to try anything and everything they possibly can.... Preferably within a two hour time span. And just when you think that they're inexhaustible.... They fall asleep, and sleep with the same utter abandon that dominated their day.
Nothing is more precious than seeing this little, pure person in all their glory.

And the best part is that every little adventure, every new experience is new for you as well. Because part of their experience is sharing it with you.

Being a parent is literally the most awesome adventure of my life.

Evan applies HIS rules to our world

This was just so precious, I had to share.
I was sitting with Evan on the floor, and he was discovering all he could about the suction tube and catheter.
Without any warning, he held the suction catheter up to my throat, and started laughing.
I was startled. Is he trying to mimic us when we suction him?
So I drew back and asked him "are you suctioning me?" and leaned forward. Immediately, he brought the suction back up in the direction of my throat and laughed again.
We did this several times, much to Evan's delight.
I just loved seeing this cognitive leap.

I'm also seeing big steps in his physical therapy, and occupational therapy.
Evan has been sitting unassisted for 30 minutes at a time. He also is reaching for, grabbing, and bringing toys to him while sitting. We're seeing super fast rolling over. He's trying to get his legs under him to crawl. He's more interested with the idea that he can move himself to get things he wants.

All this activity before his 1st birthday is incredibly heartening for me.

Just a week and a couple of days to go until we try to be rid of the trach!