Symptoms of Pneumonia

GUYS!!! Eli has stinking pneumonia!!! How did that happen?!

All the symptoms. All of them. We took him to the doc on Friday but they sent us home saying it was a virus. Why is my mommy intuition always better than a doctors medical background? lol My mom felt the same way- something is wrong. So glad we took him in before the weekned!

Looks like our weekend will be low key- we had plans to pick strawberries with friends, but I don’t even know if he is contagious or not. :/
It would explain some of his fits, though not all, because he was stating his own little opinion long before he got sick. Oh my poor boy!

Hope everyone has a better weekend than our little man.

Justice and Tantrums

We haven’t seen our ECI coordinator in a few weeks so it was very nice to catch her up on everything that Eli has been up to. She observed first hand his little tantrums- you know, the ones that we were told he couldn’t possibly be throwing because he didn’t want to do something- he’s not old enough to do that. LOL I think the 2’s are gonna be real special.

Eli is so clever and stubborn. When he doesn’t want to do something he will pitch an all out fit- headbutting, screaming, throwing himself down on the floor, crying. Yesterday he cried for 15 minutes because I wanted him to hold his own bottle.

It doesn’t help that he is recovering from a virus. He has felt so puny for about a week now so he has done little to no OT at home (OT this afternoon should be super fun). All he wanted was to snuggle and be held- and who could blame him when he doesn’t feel well?

Anyway, our coordinator said this was definitely a behavior issue- the kid knows what he is doing and gave us some tips to try and redirect him. Mama’s any tips? I’ve tried just letting him CIO when he doesn’t get his way but the kid will cry for an hour with no end in sight. Our coordinator suggested siging “stop” and then directly asking him to do whatever you would like him to do instead. So far it hasn’t worked, but I don’t think he understands “stop” yet- once that comes then maybe. We will definitely keep trying that method.

Like I said, the 2’s are going to be real special.

36 more days of school and feeling overwhelmed with all that needs to be done. Really with all that is going on in the world right now- Boston, earthquakes…down to our every day problems. We live in such a broken world and I think we were all reminded of that yesterday.
I haven’t written much about Ethan Saylor, but he has really been on my heart lately. The whole issue surrounding his death is absolutely tragic and there are no words I can fathom that would comfort his family.
Ethan’s Story
I know many parents in the Ds community are all thinking the same thing- that could have been my child.
There are petitions, threads, blogs, and organizations all fighting for an investagation that will hopefully bring justice for Ethan and his family. There is a shift in our community- from advocacy to activisim. Advocacy is no longer enough- we want equality and justice.
Many in the Ds community are looking to organizations that represent our children and families- like the National Down Syndrome Congress. Yesterday the NDSC really stepped in it- they suggested their posting members were being zealots- too fierce in their statements and demands for justice in this situation. Ethan lost his life 3 months ago and still we know very little about what is being done as a result of the officers negligence.
“What makes you think the DOJ is not taking action? The wheels of justice are painstakingly slow. We lose credibility the moment we act as zealots advocating for anything. All actions must be level-headed and well planned. What we need you all to do is buy a sympathy care and send it to Ethan’s mom. Let her know you signed the petition and let her know that Ethan will not be forgotten.”- NDSC

The NDSC is claiming their facebook page was hacked and that the statement does not represent how they feel, but the damage has already been done.
This is a sensitive subject but it brings up so many feelings and doubts about this world that we are preparing for our Eli. For me, I feel like the best thing any of us can do is pray, sign the petition and find change in our hearts. Raise our children up to know that being different is ok, that love is most important and that justice matters- family, community, our moral standing matters.

Ok, so this post got way more deep than I had anticipated…I guess I had more to say than I thought.
Let’s all be stubborn like Eli- stand up for what’s right with as fierce a tantrum as this little boy can throw (which is pretty impressive in my opinion).

C.-Diff and Other Fun Stuff

It’s been a while since my last post. We had the pleasure of visiting with a friend of mine and her sweet family. They just welcomed baby Quinn into their family and it was so exciting to connect with her! I can’t wait to go back for another visit (especially because I didn’t get to snap any pictures and I need to get my squishy baby fix!!)

We just got over what I am lovingly referring to as Vomit-Fest 2013. I had a weird tummy thing for 2 weeks but nothing major. I knew it was contagious when Barry started complaining of an upset tummy. And I knew Eli had it when he began to refuse food. All food. So we followed the BRAT diet and tried to get him to eat for about 4-5 days. He seemed to be recovering when the vomitting happened. No fever. Just the vomit.

And suddenly my worst fear was realized: I don’t do vomit.

My mom always told me that when it was my kid it would be different- you can handle it because its your kid. Not the case for me. Barry walked in on me holding Eli over the sink, red-faced and dry-heaving with tears rolling down my face. It was that kind of special.

Then came the call to the pedi at 11pm because he had thrown up 4 times in about 2 hours. I felt bad enough calling so late but what made it worse was the doctor on call for my doctor was our ex-pedi. We broke up with him a few months ago when he wouldn’t back off about vaccines.
Dr. H was polite and actually helpful but it was awkward. I didn’t feel comfortable talking to him.

Anway, the anti-vomit meds worked and we spent Sunday recovering only to find out on Tuesday that a stool sample I insisted on came back positive for C. Difficile Toxin What?!
Yeah…basically it’s an imbalance of a bacteria called C.-Diff and it causes ALL the symptoms we were experiencing. Fun stuff.
Read more about it here.

So the antibiotics for it are apparently pretty intense and it sounds scary (the nurse told me to not look it up…she reassured me that these meds work and that Eli getting this is just bad luck and he will be fine. But I am freaking out anyhow. Awesome.).

Poor little dude has a stuffy nose too but otherwise we are doing well dispite the nasty poo virus.

Moving on…I’m feeling a bit frustrated with OT progress. Not our therapist- she is wonderful, but just Eli’s progress and understanding of it. He has the ability but flat out doesn’t want to crawl. And lacks the coordination to be successful so he sees it as too difficult. Just like with his bottle…he won’t hold it but he CAN. He just fights it. Smart boy knows mama will do it for him.
The other day I let his sitter know that he could hold his bottle and to make him do it…she didn’t even have to. Eli picked it up off the floor and went to town like he had done it thousands of times before. TURKEY!!

Anyway- trying to learn to enjoy this slower pace but it’s difficult because all his peers are beginning to walk and my son is mastering rolling to get to where he wants.

We did get good news yesterday- we are finished with hearing aids!! It’s silly to even say but it does feel good to get this ear situation finalized. He had his last ABR yesterday. He has a slight loss at the lowest frequency but they believe that the tubes are actually causing it. So they removed the fluid but cause a bit of a loss- I will take it. My boy can hear and that is all that matters! So naturally I’m expecting him to start talking any day now…lol -_- Again, I need to enjoy the slower pace.

We are beginning to plan his birthday which is exciting. A bit nerve-wracking but exciting. I can’t believe in 2 months he will be a year old. I feel like he was born yesterday! We are doing a sock monkey party which will be super adorbs. 🙂

What else? Oh! I have THREE, count them, three!!) paid photography sessions coming up this month! I’m thrilled and feeling confident about that. Hoping this takes off and I can do more and more pictures for people. 🙂

I guess that’s the update in our world right now. I wish I had more exciting news than just family updates…I need something inspiring to write about!!