*sigh*

I thought that I would spare everyone the day by day details...until now- simply because I need to get it out before I completely lose my mind.

May 8th - Pediatric Opthamologist

Ethan needed his eyes dilated which made him EVER so happy. Even better was the actual exam. He wouldn't keep his eyes open (because he was throwing a fit!), so they had to then put in numbing drops and then the prongs to pry and keep his lids open (ok- eyes are beautiful WITH lids!!! Totally creepy without!!!). That was torture. Long story short- prescription changed (more astigmatism) and he may have a cataract. We just got his new glasses in the other day...very cute.

May 9th - Potential School Visit

Ethan graduates from his school this year (June 1st) and his placement next year has been the source of anxiety for me. Another long story short- Ethan lost close to three years of his life to cancer and the treatment that was the good/evil of it all. Good of course that it kept my baby with me, evil because of what it did to him long term. For three years, we missed vital therapy sessions and he is now so far behind, it is very discouraging for me. So, I visited another school that he could attend and was pleasantly surprised. It is a self-contained classroom BUT the inclusive opportunities are great! And, the teacher does what she can to get that inclusive time. It is very hard for me to think of Ethan as being severe & profound, but that is what he is right now by all definition in correlation to his age. So, at least I didn't leave this meeting in tears like I did the other school- I was a mess!

May 15 - The Dreaded IEP/Transition Meeting

Good News/Bad News...Bad News first.

The majority of Ethan's development falls below one year. He is especially behind cognitively. I am having a very hard time knowing that Ethan is turning six in a week and is still developmentally a year old.

Good news...Ethan has made TREMENDOUS gains since he finished treatment! He is getting stronger every day and now it is not necessarily a matter of not being strong enough to do something, but him just taking the easy way out and then being stubborn about it. Boy, there is no argument that he has nothing wrong with his stubborn gene!

We have a 99% chance that we will get to go to school at the school I mentioned above. It is really what is best for Ethan, even though it is classified as a severe & profound classroom. And, I don't know about all the other states, but here in NC, the children with special needs have to be labeled (I hate, hate, hate this!). Ethan has been labeled TMD (trainable mentally disabled). Trainable? Like you train a dog to do tricks? See, I hate it.

Also, the school does not have after school care. This means that I need to find a daycare. Guess what? No one wants to watch Ethan! Why? He is school age and not potty trained, oh and has special needs. It was amazing how they were willing to help until I mentioned those facts. That is my new challenge.

I didn't cry at this meeting either. It was very strange. Our PT actually even congratulated me on it- LOL! I just want so much for Ethan and all of this just breaks my heart into a million pieces.

May 16 - Pediatric Dentist

Always a jolly time at the dentist! Especially for a kid with sensory issues...Good news- no cavities! And, his gums look better from the last time due to our great torture- I mean brushing sessions. Two of his 6 year molars are IN! I didn't even know it! And, his other two on the top are right there waiting to bust through. X-rays show that he is missing his #20 permanent molar, BUT not to worry they say! That is the one that gets pulled for braces anyway! HA! Oh, and he has worn his front teeth down so much from grinding that they are now calcifying and turning a beautiful shade of yellow.

May 18 - ENT/Audiology & Unplanned trip to the Pediatrician

Because Ethan is 6 and has NO words, I really wanted an ENT/audiology work up. Well, ENT shows that Ethan has a beautiful infection that has green gunk piled up in his ears (not infected yet though) and it's the same junk coming out of his nose. His throat is also fire red (not strep though). This explains Ethan's recent eating events...So, due to the fact that Ethan's ears are not in any condition to be processing for an audiologist, we had to reschedule that. Of course that is how it works since my two in one appointment has now turned into two with two co-pays (grrrrr). So, we now have omnicef and a new script of Rynatan.

I also asked about apraxia. My ENT feels that this is what we are dealing with, but didn't want to tell me until after the audiology report. Yeah us. Verbal apraxia. Woohoo. Looks like I will be waiting even longer to hear Momma...

About the unplanned trip to the pediatrician...this morning when changing Ethan's diaper, his penis was red and had a white, pimple-like bump at the tip. I thought it was just yeast like he usually has after antibiotics, but it didn't come off. It was a white bubble (ew). Well, the nurse wanted to have me bring him in, so I did. Bacterial infection on his little manhood. We had to pop it. Poor baby- it hurt him so bad. But, the pressure needed to be released and the PA needed to culture it. The good news is that the omnicef will now treat his upper junk, chest junk, and now the lower junk.

That's all...I think. I am proud of how far he has come, that is not it- I am just upset that he has had to go through SO much and it is just a reminder to me everyday of what he did have to go through. Have I told you lately how much I hate cancer? Congratulations if you made it this far!