Playing Catch-up

Home sweet home! Can you tell I am glad the Atlanta trip is over with? For a bit anyway...long day, but Connor stayed sweet through most of it.

Lots to discuss with the doctor-Connor had his exam, started the infusions, we met with our social worker about our paperwork for the Katie Beckett waiver, and got the last bit of paperwork that the school system wants. (that Connor doesn't can't finish his vaccinations for medical reasons)

Whew! Feels good to be marking things off my list.

Connor was zonked on Benadryl for quite a while. Poor guy was tired from being woken up so early.

Not much news from the dr. He might move the IVIG to every 3 weeks instead of every 4 depending on this next month and how his walking goes...he also thinks we might be repeating the Rituximab chemotherapy in May maybe-not sure when exactly yet. He ordered some extra blood work that we are waiting to get the results back from still...

Got things set up for next months CT scan-it has been SIX months since the last one, hard to believe. Please keep Connor in your prayers for a clear scan with no new tumors. It is always so difficult for Connor on these scan days...so maybe some extra prayers for him to do well with the prep beforehand and the sedation as well. He HATES drinking the contrast-we have to force-feed it to him slowly for two hours with him screaming and fighting with all his might. :( These poor kids and what they endure-it is so hard to watch.

We are going to have quite a string of trips coming up (about every two weeks) to Atlanta-but even though the driving is a pain-I am thankful that we at least have the doctors close by. Better than flying every month, huh?

Next week I have to take Connor for his STEPS evaluation. This determines the number of days he will attend school and also the amount of services he will receive while there. We are keeping our fingers crossed that he will qualify for at least 3 days per week-preferably at Samantha's school. (pray) It will take a while to hear back though-probably 60 days or so.

Deb

Busy, Busy, Busy...

WOW-one small word to try and sum up all the craziness we have had lately. The good kind of crazy though-just super busy. Errands and appointments every day have made computer time very limited (okay, non-exisitent, LOL) This week is a bit slower...a trip to Atlanta for Connor's infusions is set for Wednesday-but nothing out of the ordinary.

Our little friend Travon had a story published in his local newspaper about him and his struggle with OMS. I was thrilled to see awareness spreading by the article! Check it out HERE if you want and see Travon and hear his families story.

Connor has had some progress with speech the past couple weeks. He is now saying a few more words (although very garbled) The newest was today in the car Samantha was telling knock-knock jokes, and Connor began knocking his hand and saying "Na-Na" He was trying SO hard to get the whole word out, but that is all that would come. We all cheered for him and I called Sam right away to share the good news with him. He also has been saying Ut-oh very well a lot and began adding the "dee" to the end of Daddy (instead of just Da) Wow is another new one, although that one comes out as "Owww" :) He is making progress though, thank goodness for that and we are so grateful for the prayers that have made this possible.

Samantha is doing great with her cast-not letting it slow her down much at all! Look closely at the picture below and you can see her pink and purple striped cast. This is a pic of Samantha and Kate (her best friend for half her life) on Valentine's Day. Next week she is the star student of the week and I have a feeling she is going to be toting her cast collection to school to show her friends...how sad is that to have a collection of casts at 6 years old? LOL Hopefully this is the last.


I'll try and do better on the updating...I actually have quite a few pics I want to share from the past few weeks.

Love to all!
Deb

Looking back...

I was looking back at some Pre-OMS pics tonight and came across these pics of Connor a few months before he got sick. He was so bright eyed and healthy, we sure didn't know what we were in for...

We had a good weekend, getting ready for a busy week. Lots of errands, appointments, and tons of driving (story of my life!) therapy, ballet, open house for high school, playgroup, and all the usual happenings-whew-it is going to fly bu I bet!

Good news for Ryan and Stacy-they got into Columbus High School! This was their #1 choice and they worked their butts off to get in-we are so proud of both of them. They are so excited and I know they are proud of themselves too...

Also some good school news for Connor-he is definitely going to be going to regular preschool at least 2 days a week. :) The other days he will be in STEPS at Blanchard most likely. But we are psyched about him getting a chance to be around regular kids and learning from them.

We are going to Disney World in a couple weeks for the twins birthday. We were sort of avoiding making a trip there-afraid of being disappointed by Connor's reaction. He is afraid of most rides, and might have trouble walking, etc...but we are going to take the plunge, for the rest of the kids sake, and I think Connor will have fun looking at everything, even if he does sit in his stroller for most of it. hopefully he will be doing well enough to be up and walking (pray)

Love,
Debbie

Where do I begin???

A lot can happen in less than a week I learned. Samantha broke her wrist on Sunday trying to climb over a baby gate :( (it was almost exactly three years ago that she was in a long arm cast after a fall running around with her cousins) This time she has a pink with purple stripes SHORT cast (much easier!) and is feeling a lot better after a tough start to her week. Still in some pain-but going to school like a trouper and not complaining at all! Poor girl-she is so tough, and I am so proud of her.

Connor finished Round 7 of Decadron well. He did good on the Zyprexa with his mood swings-still had problems, but much better-and his pain was controlled fairly good with meds as well. He is still walking (yeah!) and is now back to his pleasent non-steroid-self...I am keeping close track of when he might begin having trouble walking to see if it relates in any way to his IVIG infusions. This will determine if he needs a higher dose or an infusion more often instead of monthly.

And some good news...

We were leaving playgroup today and I told him to say bye (expecting him to wave) and he said "Bye" It was a little garbled, but it was obvious what he was saying.

My jaw dropped I was thinking, did he just say bye? I am STILL in shock. After all these years-he said it finally. Thank you God!!!

His appointment in Atlanta yesterday at the eye doctor is over with-now we have ALL the paperwork we need to turn into the school system to get him evaluated for the STEPS program. His eyes were in great shape the doc said...

Doesn't sound like the school we were interested in for Connor is going to work out-long waiting list and it is primarily beneficial for the kids with autism as I was afraid it would be. I was disappointed, but I have a new plan of action, lol. We are going to see what the school system offers him and then put him in regular preschool the rest of the time. (I hope) I don't know if we will need to provide an aide for him there or not...I'll let ya'll know what we find out.

Deb