"School's Out"

It is so nice having the whole week of Thanksgiving with the kids out of school! 5 whole days, plenty of time for the kids to catch up on school projects (and sleep, lol) Today was productive, we braved the mall and left with a gorgeous dress for Stacy to wear to the holiday social the high school is having. It is sparkly and pretty and everything a 14 year old girl would dream of! Can't wait to see her and Ryan all dressed up-I'm going to be snapping pics like crazy, lol. Still need to get Ry some nicer duds, boys seem easier though to me. I can guarantee he isn't going to be as excited as Stacy was about her dress!!

Samantha is coming with us to the doctor tomorrow...I hope it is okay she is coming. They have had a "no siblings under 12 rule" since the swine flu outbreak...nevertheless, every time we go there are lots of non-patients around. It just means a lot to her to get to feel included in these trips we make so often...in all this time, she has only come twice. Ryan and Stacy opted to stay with Aunt Laurie, it IS a very long day and they will have more fun hanging out with their cousins.

Speech Therapy is going well, we even got an extra slot now for Connor so he is going twice a week now, Woo-Hoo!! Not easy to squeeze him in since the place he goes is so good with kids-it stays booked solid. We have an awesome therapist too, so we are really blessed.

Lots of fun stuff coming up...Thanksgiving, Samantha's 7th birthday party, Fantasy in Lights, the twins social, etc...busy, but a happy kind of busy! Connor is really looking forward to Thanksgiving, lol. He knows about the turkey and pie part at least and that was enough to get him smiling.

Haven't rescheduled the scan yet-hopefully tomorrow we will find out when it will be. For now we are just thankful he is doing as well as he is! Everyday learning new things and enjoying the smallest things.

Happy Thanksgiving and prayers for all the kids hurting this time of year. And the parents that are missing their children so badly.

Love,
Debbie

Do doggies have ports??

Haha, snapped this one of Connor in my bathtub-getting all cleaned up from his adventures outside this afternoon...and it was an adventure, he was being particularly naughty and had thrown my telephone over the very tall 6 ft. fence into the neighbors yard and various other pranks he was keeping himself busy with. He is hard to keep up with-and can't be left alone, it is scary the things he will try and do on his own. This morning as I came out from the bedroom just a minute after him-I found him with our little doggie ON TOP of the stove!! Thank goodness he didn't try and turn the stove on and cook her.

As bad as his behavior sounds it is actually much improved from over the summer, he is still hyper and impulsive...but is happier and laughs a lot now. His vocabulary is so limited-yet since we know him so well we can piece together what he wants to tell us now quite often. As for the "dog incident" I asked him why he put her up on the stove and he said, "Beh-Bop" translated to mean "Belle Hot" Oh my!!! So apparently he knew this was a dangerous thing to put her there. Not good at all, lol.

With his language starting to develop, we have heard for the 1st time his thoughts on different subjects...I was telling him a couple weeks ago that Belle needed to go to the vet to get her shots and a check-up. He looked at me and had a concerned look on his face and said, "Beh-Por?" (Belle Port?) as he pointed to his port where he gets his medicine. I was SHOCKED, I told him that no, Belle doesn't have a port-she just gets her shots in her shoulder...never thought I'd be answering these types of questions, you know? Connor has never known any different, his whole life that he can remember is hospital trips and medicines and tests.

Tonight I was doing a little updating on some of my links and I finally made some of the changes I have been putting off...I had to change two of the warriors to angels. It was very hard for me to do, it is like it made it really real-not that it wasn't before, but just hard to see in print, next to the names of such lively little boys. Little Ryan and Braeden, I will always remember you both!!

We have a lot going on the next few weeks...IVIG is next Wednesday in Atlanta and Connor's CT is scheduled for the 1st of December. Please keep him in your prayers for a clean scan. I am hoping to change the date of the scan-it is the same day as our Camp Sunshine outing to Fantasy in Lights. Then we will be back in Atlanta around the middle of the month for another infusion...

Also to do, preparing for the holidays! There is Samantha's 7th birthday party to plan, and Ryan and Stacy have their first formal social to go to since they began high school. Lots of pics to come of these happenings!! :-)

Another Anniversary...

Seems I am constantly seeing things as important milestones...one of our most important milestones has come since LAST November. It was only a year ago that Connor (at age 2 1/2) could not speak a single word. I waited so long to hear that precious voice say Mama for the first time. I cried when I heard him speak that day-I could see it in his eyes that he knew I was his Mama and that the word was connected to me. What a gift from God and many prayers answered!

Soon after more words came-some we could understand and some we could not. His articulation has continued to cause him great frustration...sometimes he will shake his head no again and again, as we ask him, "Did you say ___?" He now has about 50 words he tries to say-but most of them are only understandable to VERY close family members...But we are proud of him-he has gone from being completely silent to being able to communicate his needs and wants pretty well!

Speech therapy is going very well. Great therapist, and very useful info to try at home to keep him learning new words. I am in awe every time we go how they work with him and get him to make sounds he hasn't before.

He hasn't gotten the H1N1 vaccine...it just simply isn't available. I was conflicted on the vaccine anyway-but I am very worried about this and every other illness just waiting to attack. I try not to keep him in a bubble-he goes to school the 3 days a week after all now. But nothing makes me madder than seeing a sick child at school that does not need to be there! Please keep your kids home if they are sick-not just for kids like Connor with poor immune systems, but for all the kids. H1N1 is hitting all sorts of people, especially healthy kids. Okay-off that soundboard, lol.

Love to all and please keep all the OMS kids and NB kids in your thoughts and prayers,
Debbie

Happy Halloween!

Is anybody still out there reading this? I am so sorry for the long delay in posting-no excuses except still getting used to our busy routine...Sam traveling so much has put most of the parenting on me-so it means long days (and nights sometimes for me & Connor)
I got Connor back into speech therapy, so we have added that to our weekly schedule-along with his every 3 week IVIG infusion. He is off the antibiotic infusion and on oral meds for twice a week, saves us an hour in Atlanta every time! Woo-hoo!! He is doing great too, walking well & trying to talk more and more. Wonderful to hear, he is improving so much from school, which he loves.
Halloween was fun, we had our big party at my sisters house-complete with a scavenger hunt for the older kids, and musical pumkins and mummy wrapping with toilet tissue, lol! Connor loved his cowboy costume and we even talked Daddy into dressing up as a doctor for the festivities.
Connor is still doing lots of cooking with me, lots of cakes (which he calls "C")He doesn't eat much of the treats, but really enjoys using the mixer and decorating. So sweet!
I was checking my email on Friday and I had a note from our social worker in Atlanta...she and Connor's doctor have filled out paperwork for Make-A-Wish!!! It is a long process, especially with the economy so bad off, but it looks like it will take about 6-9 months for him to get a wish.

I can't believe how excited I am about this...my sister had referred Connor a year ago or so and it depressed me All I could think was Connor can't communicate enough to tell us anything about his wants or where HE would like to go. And with that organization (Kids Wish Foundation) the child HAS to be able to tell the wish...not possible for Connor...even now he still can't express or verbalize enough to do that. But he doesn't have to for Make-A-Wish.

Connor talks ALL the time about going back to Universal Studios where they have a Curious George water park (we went for one day in July) Of course-all he says is "Shoe Wa-Wa" He pronounces George like shoe-but WE know what he means, lol.

Tomorrow is our Atlanta day...Connor is looking forward to doing his arts and crafts there that we save for his time he is hooked up to his tubies.

Thanks for all the prayers!
Debbie

Lots going on!

Kids are keeping me hopping, high school especially has been a Wowser with all they have going on...dances, homework, socials, field trips, projects, reports, after school activities-you get the picture! Studying with Samantha after Connor goes to bed is killing my evenings too! Busy kids=busy Mama, lol...

Connor's behavior has been much better thank goodness. Still can't leave him alone for second-but he is calmer at least. He seems to really like school now, he is very quiet there, but the routine is doing him good. No new words though-really have hit a standstill again.

Last appointment in Atlanta went good. Connor kept busy with his special arts & crafts he likes to do while he is hooked up. And the BEST part...He didn't have to have the 2nd infusion :-) so we saved an hour! He is on oral Bactrim now Sat & Sun every week. I met with the nurse practitioner and next time we go (Oct. 13) they will run blood-work to see when we will do chemo again...depends on how his B-cells are looking. It's been about 6 months since his last chemo treatments, and I'm hoping after he gets it again we will see some new language and other positive signs like the last two times he has had this drug. (Praying)

We leave for Camp Sunshine on the 9th of October for family camp weekend! I am worried how Connor will do there, but we are hoping for the best. I know Ryan and Stacy will enjoy it (they went last year for sibling camp and LOVED the activities) It'll be some good family time and a chance to meet other families with special kiddos. I'll be sure to take pics to share here!

I need to say a special THANK YOU to my dear friend Theresa and her family for the extremely well-timed card they sent our way recently. I appreciate the love, support, and prayers more than I can say. Miss you guys!!!

Connor is still enjoying cooking a lot. He is so cute "helping" me in the kitchen. The other day I was making a macaroni salad and chopping lots of veggies to throw in-he likes to pull a chair up to the counter to watch. I told him not to touch the knife and he went and got a little yellow plastic knife and spent 30 minutes mashing up a piece of celery with it, lol! It really holds his attention to help in the kitchen. :-) So sweet!

Ryan and Stacy spent quite a few hours last weekend with their Aunt Beth helping her set up Halloween decorations. It is a fun time of year for them-my sister goes all out and we are lucky that Halloween is on a Saturday this year for my sisters BIG BASH. Stacy has her costume bought and hanging ready to wear, it is a funny one this year-she is going to be a Prom Queen with the sash and everything, but with cool gloves and accessories. Ryan is even thinking of dressing up this year and this was a shock because he hasn't for two years now. I'm glad they still want to, it sure makes it fun for all of us. Even Connor keeps signing the sign for candy whenever he hears the word Halloween, lol! He is excited about that part for sure!

I'm not sure yet what is going on at the restaurant for Halloween, but I'll post it here and on Facebook when I find out. I hope things are calmer this year and no one tries to show up in anything crazy-a couple years ago a guy had to be "removed" for not wearing ANY clothing at all...not sure what his costume was supposed to be, lol!

Love,
Debbie

"Awareness"

September is the month to spread awareness for childhood cancers...September 12th specifically, but all month long as well. Most people aren't even aware there is a special month devoted to this cause-until it is you that has a child diagnosed with this disease.

When you are dealing with a RARE disorder (OMS for example) chances are you won't be getting a month OR a day for your cause, lol. I am realistic, but not giving up on spreading awareness for either condition! Much like smoking leads to lung cancer in many cases-cancer led to my sons brain injuries, making me feel moved to spread the word to everyone I can reach that more research is needed to prevent other parents from going through what us OMS moms and dads and cancer parents have. So here is how YOU can help!

*Support Childhood Cancer research (organizations such as CureSearchand The Children's Cancer Foundation)
*Donate blood
*Donate your time and money to Ronald McDonald House Charities
*Wear GOLD!!! (ribbons that support childhood cancer)
*Volunteer at children's hospitals
*Support Camp Sunshine (programs for children with cancer)

You might notice that although these examples are directed towards fighting cancer, most of them have long reaching benefits for the OMS children as well. Especially the donation of life-saving blood! When we are at clinic we see so many kids receiving blood transfusions, probably more than we see getting chemotherapy. But here is an interesting fact most people aren't aware of-I know I wasn't before Connor became ill and began getting infusions of antibodies every 3-4 weeks for the past two years...

IVIg (Intravenous Immune Globulin) is a blood product administered intravenously. The antibodies are collected from the pooled plasma of THOUSANDS of donors! So you can see how badly blood products are needed for many conditions.

We are going to Camp Sunshine for family camp weekend in October! I was happy to hear this-it should be fun for all of us (well, maybe not Connor, he is still struggling with going anywhere he isn't used to) He is really getting used to his school routine though and is doing GREAT!

More soon,
Debbie

September is here!

First day at school!

Fake casts courtesy of Stacy-silly girl :-)

Connor relaxing after school wearing a hat he made that day...

Still in the "baking phase" so we are doing a lot of cooking around here.


If you notice the quality of these pics just kept going downhill. A little someone got hold of my camera (again) and messed up all the setting so the pics were awfully blurry. Sorry bout that, lol!

Busy day, like most lately, in a good way though. Connor's behaviors are back to a normal level (for him) that is tolerable...except last week when he did steroid week with nothing on board to combat the rages (won't be doing that again) Sam was traveling, so it was really a tough week, then Friday came around and he slowly started calming down over the weekend. School is going great, he goes in happily most days (more like content) except today-he was probably exhausted from hospital day yesterday in Atlanta. He still let me leave without much fuss, and began his busy day at school.

New changes have been made due to a pretty bad flu situation going on in our town. I pulled him out of his day school (the Tuesday and Thursday one with all the "normal" kids) Just too much exposure to handle realistically with his compromised immune system...I am fine with it though and feeling better about our decision. At least it leaves Tuesdays open for the hospital (we are going every 3 weeks now for his infusions) so he would have missed a lot of time...Plus he has speech therapy on Thursdays.

Tomorrow Connor begins seeing a new speech therapist. I am sure it will work out fine, but this was very upsetting for a few reasons...because of insurance reasons we are no longer allowed to see his other therapist (who he has been with 3 months now) New things are SO hard on Connor, and he was just starting to really hit his stride with the other therapist, so it is frustrating-feels like we are losing time by starting over with someone new. Please pray for the transition to go as smoothly as possible!

It is Childhood Cancer Awareness Month and also the 2 year anniversary of Connor's official diagnosis. Hard to believe it has been TWO years! I am still struggling with my anxieties over his future-but he is doing well right now. I am trying to take it one day at a time, and look at the positives-mainly being-HE IS ALIVE. Thank you Lord for this precious boy! One year ago he had NO words...now he can say Mommy and Daddy and many more. Simple words, like Hi and Bye-and some that we understand and no one else does, lol...But those few words are the most beautiful sound in the whole word. I think I have posted this before-but here is something I wanted to share this month...about what cancer took away from my baby when that tumor grew in his body and caused his OMS. His words that he is fighting so hard to learn and speak...

I Am The Child

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware of much — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world’s standards — great strides in development that you can credit yourself; I do not give you understanding as you know it.

What I give you is so much more valuable — I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.