"Holiday Social 2009"

My handsome nephew Steven, so grown up!

Stacy, my lovely little girl...

My babies ready for the big night!

Ryan looking handsome in his tie

Stacy looking gorgeous!

Is it okay if I shed a tear or two over these pictures?? I am the mom after all, and don't most moms get teary-eyed seeing their kids suddenly looking like they are on the verge of being grown up, lol? I sure did tonight, I am so very proud of my kiddos-getting into the school they both wanted-working extra hard to make it happen and succeeding! Good reason to celebrate!
They attended the high schools holiday social tonight and had a great time. The favors were adorable, wine glasses filled with gel candles and the name of their school and the date written in gold lettering on them-so beautiful! We look forward to 3 more years of them maturing and learning and watching them grow...
Connor was in terrible pain on the way to the festivities-so bad we dropped the kids and went directly to a drugstore to get him some much needed Motrin. Me and Stacy had to massage his legs the entire time in the car just to keep the crying at bay...this joint pain he gets is just soo hard to watch him suffer with! The Motrin did its magic, and we were off to enjoy some Christmas lights while the kids were at the social. Connor and Samantha LOVED one house in particular that goes all out with their light display, so cute seeing their reactions!
Tomorrow is a big day for the little ones-Connor's 1st class Christmas party, followed by one for Samantha's class. Can't wait for the fun!! I probably went overboard (sorry teachers, lol) with the planning for Connor's class-I couldn't help myself. I did little stocking for each of the kids with their pictures on the front and filled the to act as "goody bags", and we will have a pizza party and book exchange for the little ones.
Today Connor and I went to visit Samantha's 1st grade class and we decorated gingerbread houses, I'll post pics once we bring them home! Adorable! Connor ate as many candies as he put on his house, lol, it was funny to watch him. Then he played outside with all the "big kids" He is so tall though he is almost as big as some of the 1st graders. Strange to see him interacting with so many kids at one time-we keep him away from large groups in general, so I was glad he did okay with all the chaos going on...
Love to all,
Debbie

Our Hero!!!

Clear CT Scan! We are elated and so excited to report that Connor is still NED and doesn't need another scan until the summer, woo-hoo! We saw the doctor today and he is very pleased with everything, the scan and Connor's continuing to do so well. Thanks for all the prayers and support during the scan-anxiety. It means so much to me and Sam to know how loved and cared for our little guy is. We are so blessed!

We discussed how much longer we are going to continue the steroids, looks like it will be around another year. That is good news and bad news-good because the very thought of weaning him off of the steroids scares me, the possibility of his OMS relapsing when the medications are withdrawn is frightening. He could lose words, his ability to walk, etc. I don't want to think like that but it is hard not to remember where he was and we don't want to risk all that he has gained...but, it becomes very dangerous to stay on these drugs too long, then you get a whole other set of problems from the side effects, in Connor's case, bone issues, cataracts, etc. We are going to see an opthalmologist soon just to check and make sure there isn't any eye damage beginning...

We have kept busy with lots of fun Christmas activities...and more to come! Hope everyone is enjoying the holiday season. Love to all!

Debbie

Here we go!

Please keep the prayers coming for good test results on the CT scan early tomorrow morning! Our brave boy will be in the radiology department drinking the contrast over a two hour period, then get his IV which he will receive the IV contrast through, sedated and scanned...no appointment afterwards with the doctor so we aren't sure when we will get the results. Hopefully the next day (Wednesday)

He knows he is going to the doctor, but I am sure he will be upset as soon as he sees he is in the radiology department, so hard to see your baby scared! Praying that he feels comforted and as calm as possible and that he remains NED now and always.

Blessings and more...

Hopefully Thanksgiving was as special for all of you as it was for us. We had a good time over at my mothers house(lots of yummy food, Mmm) and mostly just spending time together and watching the kids enjoy themselves.

Connor has been so happy lately! It has been fun to see him laughing, playing, giggling, and silly. We went to the mall last weekend and he climbed right up onto Santa's lap! Even said, "Pools" when Santa asked him what he wanted for Christmas, translation: tools :-) He still has his very hyper, active side that I struggle to keep up with, but it is such a blessing to see him like this.

The only thing that put a damper on the holiday weekend was Connor had quite a bit of pain during this round of steroids...by the 3rd day he was screaming if I even moved his legs when changing his clothes. His mouth also gave him trouble, probably a sore jaw. Through it all, he still manages to get up every day and give each day his all! He is going to speech therapy twice a week now and working SO hard there to get some words out. It is like his mouth just doesn't know how to do it right...He loves his therapists toys, especially a farm he plays with there-so that gave me a good idea for Christmas.

It is hard to shop for him because he really doesn't play like typical kids. He likes to play, but it seems like he prefers just taking in his environment and following me around, "helping" me do everything I do. Some days it feels like I still have a young baby in the house because he can't be left alone for a minute or he might hurt himself or make a huge mess. Today he was alone for only a couple of minutes while I took the trash out and he got a childproof lock off the cabinet and filled the dishwasher with an entire box of detergent! With him so much stronger and taller now, it feels like there is no "safe-place" to keep him anymore. Gates and locks don't work, and he doesn't have enough understanding or self-control to not get into things. I am hoping the older he gets the more this will ease...

Next Tuesday in Atlanta he has his scheduled CT scan to check for any possible tumors. Always a super scary time for us! No easy way to do this test either...2 BIG cups of foul- tasting contrast to drink and an IV in his hand. His port cannot be used since they need to also inject contrast intravenously and that could damage his port. Please send prayers his way for him to remain NED!!! (no evidence of disease) Love to all!

Debbie

"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.

"New Routine"

So, What have we been up to the past couple weeks? Just trying to get ourselves used to this hussle and bussle of juggling new schools for the kids (lots of new things actually)

Everyone has adjusted so well to the changes-Ryan and Stacy are really enjoying high school-other than getting up REALLY early, lol. They leave for the bus at 6:30 am...another change-that big yellow thing called a bus, they never did that before. What a big difference between middle school and high school! They are loving the freedom and especially the amazing kids at this school-all of them are so bright and want to be there learning. We are really happy, can you tell?

Samantha too is doing good-had some nervous first few days, but it doing great overall. She has learned the joy of homework (Not!) so that is keeping Mommy busy too. Her stress level from Connor is still pretty high, but at least she has an escape from that at school and thankfully her eye twitches have gone away.

Connor has had the most to get used to-a whole new routine everyday. He has been a trouper through it and stunned us with how good he is at school. He doesn't care much for the nap time, lol, but he does cooperate and lay still for the teacher. He has been twice now to the church school as well and it is going smoothly too. He gets pretty worried, but hangs in there.

The last trip to Atlanta for his infusion was a little scary-his port has been giving his nurse a little trouble twice now...if it is working properly it is supposed to give blood back (for bloodwork if needed) and it hasn't been. It eventually began working again, and next time she is going to try a larger needle to see if that does the trick (praying it does) or it might mean testing to see if it is malfunctioning. That would be bad-a new one would require surgery to replace it. But I have enough to worry about without imagining worst case scenarios-so I'm putting this one out of my head and trusting that it will resolve itself. Some prayers won't hurt either though, lol!

Things at home are about the same (mood wise for Connor) Sleeping better though and that has been awesome! Still wakes up once or twice, but he is able to get back to sleep quickly. Yesterday we saw the doctor to discuss how he is doing with all his raging and destruction and general "flying off the handle for no reason" and we are adding the old medicine Zyprexa back...really feel we have no choice-it has simply come down to a matter of safety for him and everyone else. He is too unpredictable and has no concept of being hurt-and that is a dangerous combination...In the past few weeks he has started a small fire when he cooked Ryan's wallet in the microwave. And burned up all Ryans money, took off countless times...in Walmart I let him out of the buggy for a minute because he was climbing out (seat belt didn't fit around him) and he took off and I could not catch him since I was slipping in my flip flops-thankfully a lady caught him for me...then he opened the door of the car while Sam was driving after he got out of the car seat! We had the door next to him child safety locked, but not the one far away from him. Now we do...Sam had to catch him by his leg while he was still driving...this was terrifying as you can imagine.

I am pretty speechless right now over it all, and this is just the big stuff-the smaller stuff is almost worse I think because it is constant. And the screaming is the worst part , it is all day long, happy one second, raging the next...he threw a wrench at my face and gave me a big bruise...

I am going tomorrow to get a handicapped sticker for my car. (Another thing I have been avoiding) We have always just "managed" with getting Connor to and from different places...we use the stroller a lot, carry him, get shopping carts from the parking lot to put him in, etc. But he is at a size now that it is getting harder-42 pounds is a lot of boy to carry, lol! He has about a week a month, usually right before IVIG, that he doesn't want to walk as much and chooses to crawl-not exactly a convenient way to get to and from places, huh? Also-he has such a hard time in crowds that he just cannot handle the stress of working our way into the school from the faraway parking lot with SO many kids and parents hurrying in along with us...it is a set-up for disaster for him-I guess his senses get overloaded by the noise and all the people and he just becomes a nervous wreck and that sets off more crying. I hope this helps him-at least he will be able to get into the school without having a breakdown or falling down.

As for me-school has been a true blessing to my sanity. I miss Connor while he is there-I feel almost physically ill at the thought of him there struggling, but I know it is the best thing for him. I am keeping myself busy-getting ready for a HUGE consignment sale I am involved with and next week I am going to start covering the morning shift at the restaurant some while my brother-in-law is in class. WOW-I get to be around grown-ups!

Something wonderful arrived for Samantha in the mail I want to tell you about. It was a letter from a little girl named Lia who is 9 years old. I am friends with her mother Patty on my on-line support group for OMS. Patty had asked me since Samantha is having such a hard time dealing with Connor's problems, if it would help if she got a letter from her little girl, who has been through very similar hard times with her brother Tony who has OMS. I hope Patty (and Lia) don't mind me posting this...it was so sweet and touching I wanted to share...in the envelope was a picture of Lia and her horse, and some beautiful things Lia made for Sami.

Dear Samantha,
Hi, my name is Lia and I'm 9 years old. My favorite sport is horse back riding! And I have my own pony named Simba! I live in Illinois. I have 2 brothers and a dog. My 2 brothers are Tony and Sam. Sam is 5 and Tony is 7. Tony has OMS just like your brother Connor. Because he has OMS he always drives me crazy. Tony always hits and screams and talks too much. I sometimes lock myself in my room too to get away from him. But my dog Koby always makes me happy! Your brother can't help it. It will get better I promise.
Love, Lia

Needless to say-I was reduced to tears...happy ones! What a giving and beautiful thing for one child to do for another. We are so blessed. Thanks Patty and especially Lia, Samantha was thrilled beyond words and has turned the letter and gifts into a poster to hang in her room.

Love to all,
Debbie

July Pics...

We had some fun while dealing with the happenings with Connor at least. We went to Orlando and enjoyed Universal Studios, Downtown Disney, and the drove over to Cocoa Beach...did some shopping at the outlets there, and took some down-time from the dreaded word stress, lol. The kids had fun most everywhere, although Connor stayed in his stroller for most of it. Here you go:












All for now, more to come!
Love,
Debbie

Here's The Plan!

Me & Sam have been changing our minds left and right over what is best for Connor for this next year...I think we have finally figured it out, lol. The Pediatria place is off our list, it just didn't seem stimulating enough for him-looked like he was going to be hanging out in the baby room quite a bit with lots of babies with g-tubes...I could just see him yanking one of their tubies out or just being left on his own a bunch....

So, we are going ahead and letting him start the special needs class in the public school system. His teacher is very nice and we even found out that one of my friends kids named Amanda who has downs syndrome will be in there too! I volunteered to be the room mom, lol, so it should be a fun year. His first day is next Friday. I don't know HOW Connor will react when I leave him poor thing...PRAY!

I also got him in at Samantha's old preschool for Tuesday and Thursdays from 9 to 1pm. This will be amazing for him there since there are typical developed kids for him to be around. Only catch there is he is going to need to have an aide with him there specially for him...so we have to pay quite a bit more to get him a helper...he is only the 2nd child to do this at the school-so it is new territory for everyone.

Thanks for all the messages and calls to check on us, sorry we have been out of touch, just been trying to get a handle on life lately. The new medicine has helped tremendously with Connor's behavior. It has not been easy, but he is much better than he was before. Samantha is less stressed as well. He has been a busy boy going to speech therapy A LOT, lol, and it has been so wonderful to see how far he has come in such a short time-not so much with talking, but his understanding is improving greatly.

Ryan and Stacy are finally home thank goodness! They start high school on Thursday...I am nervous for them, and excited too, to see how it goes this year. This will be a time of lots of changes for all of us with Connor going to school for the first time ever! At two schools no less :-)

I'll try not to be so long with updates, love to all.

Debbie


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Really Rough Days...

I am so sorry for the lack of updates...thank goodness I have a phone with internet now to check my mail, because my time on the regular computer has been ZERO the past few weeks. First the good news! Samantha had the MRI and it was completely normal! Big sigh of relief for me and Sam. Not sure about when/if we will do the CT scan to check for possible neuroblastoma since she is still having the eye flickering...her doctor wants to wait and see if it goes away over the next month or so-he truly feels it could be from stress, which brings me to my next bit of news...

Connor has been extremely difficult lately (as in for the last 6 months he has worsened considerably) He is not the same as he was even a few months ago...he has always had attention issues, but never really any HUGE behavioral issues-until now. I always described him as my "sweet boy" and now we are looking for that little guy again...it seems as though he might possibly have ADHD, although he is young for a concrete diagnosis right now. Most of the children with OMS have severe behavioural problems, we just always thought we escaped that part of it-oh sure-he would be irritable at times, but it was "our" normal...sure he tore the house apart, but that was normal toddler behavior too...he isn't out-growing any of it, and it is so hard to see him like this-screaming constantly all day, lashing out at his brother, sisters, and cousins, and even the dog. Running away any chance he gets, not having any concept of danger, bouncing off the walls every minute he is awake and not sleeping well either on top of it...Then comes steroid week-and it goes from bad to almost unbearable. And he is bigger, stronger, and quicker than ever before-which has seriously put him in immense danger many times now since he is able to get to things he couldn't before (knives, scissors, pills, etc) All of our childproofing has been revamped-locks everywhere, our house is a virtual fortress to keep him in and hopefully safe-hard to do in a house with this many people, even a pencil left on the counter is a potential problem if he grabs it and runs and hurts himself on it.

Samantha is keeping her door locked and staying in her room most of the day (locked so Connor can't come in and scream, hit, and destroy) It makes me so sad that she does this-she is only 6 and can't understand why her baby brother is acting this way. She even said the other day she sometimes won't come out if she needs to potty or is hungry because she doesn't want Connor to yell at her. He can go from fine to hysterical in about 2 seconds...totally unpredictable what will set him off.

In April I saw my doctor for help in dealing with it...thinking it was just ME that needed the help, since I was so stressed from it. Thanks to a great and caring doctor, I got back on my way to normal and hoped things would settle down. They have only gotten worse-he was taking a medicine to help combat the roid rage and in April he began taking it everyday while we looked for better options for him, and only recently discovered that the side effects from that medicine were not going to work for him-so we had to wean him from it. That is when things REALLY went into complete and utter chaos...nothing in his system to help with the steroids, and all we have been seeing is Connor lacking any control over his actions, emotions, and ability to function. He is supposed to start school on August 6th and now we are very concerned how he will do there...

Anyway-what I was trying to say, is that some of this eye-twitching Samantha is having could be from stress. She is a smart girl and very sensitive, this is tough on the whole family. Ryan and Stacy are at least older and can better understand some of it, and thankfully have been in Washington State the last month when he was weaned from the med that was helping a little bit...not that they don't feel it too, but they are busy with school and hang out at their grandma's and cousins houses-so that all helps. Stacy is pretty lucky-Connor doesn't direct that much anger at her, he idolizes her, lol...

I am off to bed now-Connor just woke up again...thank you for all the prayers for Samantha, please keep us in your prayers while we figure out how to help Connor.

Love,
Debbie

I LOVE the pic above! Just thought I'd share a pic of two of my guys for ya'll...It is rare to get Connor sitting still for a pic, so this was a rare photo op.

Lots of news in our house, and lack of news as well...still no idea what was going on with Samantha-her urine and blood came back normal thank goodness-but we have been playing heck trying to get her scan scheduled! It seems it is easier to just go to an ER than wait for the doctors to set it up...we had it all set for here in Columbus when I got a call saying that we would need to go to Atlanta to do it and that they would call me with the appointment date-STILL nothing, even though I have called to check on things. Aagg! Good news is she is doing much better-I'll keep you all posted on what happens.

As for the news we do have, Connor FINALLY got approved for the Katie Beckett Waiver This Is HUGE for us, not only financially since it will take a lot of the burden of Connor's medical bills off our shoulders, but what it means for Connor himself is the really great part! Here are some of the ways it will help him as a secondary insurance:

*Speech therapy will be covered (we have battled our insurance company for 1 1/2 years to cover ST and they did approve 20 visits this summer...guess what? We just got a bill for those visits, they seem to have changed their minds...so here it adds up (Evaluation $ 165.00, Co-pays for bi-weekly visits $40.00 a week, session fees for bi-weekly visits $160.00 a week) See how quickly it all adds up?

*Will pay all co-pays on Connor's Medications

*He now qualifies to get services from Pediatria This is the nursing business that would have enabled us to get Connor's infusions done locally, instead of traveling to Atlanta for treatment...our insurance doesn't pay for this service and we were turned down. They also provide respite services and day care for medically fragile children.

Can you tell we are excited?

So, we have some decisions to make about the next year...how this effects school for Connor and if he will go to private preschool or Pediatria on his days he isn't at the special needs STEPS program. Right now I have some research to do, and that will help me figure out the best place for him.

I talked with Connor's doc a long time last Friday...Sam took Connor to the playroom at the clinic so I could discuss things.

We made some decisions-about ongoing treatment plans, and I got the name of a child psychiatrist we need to see to follow some of the meds Connor is taking, didn't end up helping since that doctor won't take our insurance (Agg again, lol!) On to more researching, right?

Looks like Connor will be doing the steroids for probably another two years...I sorta expected it-but I just can't quite stomach the thought yet, you know? I asked if he should have a bone density scan soon since steroids can result in bone loss-but Dr. George was honest and said we didn't really need to because no matter the outcome of a test like that-the benefits of taking the steroids outweigh the risk to his bones...

He talked very seriously about his immune-suppression putting him at risk, since he can't afford to catch any little bug-we will probably bump up his IVIG to every 3 weeks instead of 4 to help keep him healthy, especially with school starting soon and him being exposed to more germs than he ever has before. It will probably help with his walking too-since that last week before he gets IVIG he falls a lot and crawls on the floor quite a bit.

Then the hard stuff came-the future...he said he is very happy with his progress he is making right now but that we need to prepare ourselves that come age 5 or 6, he might just stop/slow down progressing. Most of the stuff we learn is happening RIGHT NOW, the critical age for development and once you hit those ages it is harder to keep advancing. He said he hopes he is wrong...I hope he is wrong too-but I don't think Connor is going to get out of this unscathed...he is sooo far behind developmentally...even the words he can say-nobody can understand-I am the official translator these days.

Just keep praying-he IS doing so much better and every day is learning new things and words. Right now we just finished steroid week and it was pretty rough on him and on Samantha, poor girl needs a break badly from her little brother after the steroids...Tomorrow Sam is off and we are going to see the new movie "Ice Age" while Sam keeps Connor-so that will be good for her (and Mommy)

Ryan and Stacy are in Washington right now and we miss them terribly! But I know they are having a good time and enjoying themselves before it is on to high school. WOW, I still can't believe they are going to be in high school, lol.

Please keep many of our little friends in your prayers...Patrick Chance, Ryan Morgan and his mom Missy, Will Lacey, Chloe Shiver, Liam Witt just to name a few...and please keep Nathan's mom Susan in mind as well, as it has been almost two years since he became an angel.

Deb

Fun in the Sun!

Can you guess what we did this weekend? Yep, went swimming! Saturday was SO incredibly hot-there wasn't much else anyone in town felt like doing. Connor had a great time (as you can tell from the pics, lol) He loves anything and everything that has to do with water, so he rode in his float, played in the baby pool, and even helped water the flowers at my mothers house. He has come a long way with his fear of water and even let me hold him in the pool for the first time in TWO years :-) We even brought Belle along for the fun, and she kept sneaking drinks of water out of the baby pool, lol...

Should hear back from the pediatrician's office tomorrow about when the scan is scheduled for Samantha. It will be of her chest, abdomen, pelvis, and brain and we will be able to do it at The Medical Center, since she won't require sedation. She knows nothing about it at the moment, I plan on just telling her we are getting a picture like an X-Ray, to make sure she is doing okay from the inside out. Also, we should hear back the results of the blood and urine tests that were done last Wednesday (praying for great numbers here)I will feel much better about things if these look good. As for Samantha-she is doing well, her eyes have settled down and the double vision is happening less often.

Connor is due to start another round of his steroids at the end of the week, so we are enjoying his mood right now before the roid-rage kicks in...tomorrow after speech we are going to play miniature golf (Ryan and Stacy's favorite!)

Love,
Deb

Pics from our trip to The Coca-Cola Museum in Atlanta

Something I'm not good at...Waiting

Still no clue on what is going on with Samantha...went to the opthamologist Monday and he did a really thorough eye exam with SO many different tests-not just reading letters-but tests that looked into the structure of her eyes and he said everything is perfect. 20/20 vision, eyes perfectly aligned (inside and out) no infections, blocked tear ducts, etc...he sees no reason for her to be having the double vision and the rapid eye jerking and blinking.

He wrote orders for her to get her blood and urine tested. We went today and did that...In about 90% of cases of neuroblastoma, elevated levels of catecholamines or its metabolites are found in the urine or blood. Of course, Connor had this test and he was in the 10% that didn't show elevated levels, but he thought it was worth doing since her eyes are involved.

The nurse practitioner at the ped's office called today to check on her and I have a feeling they are going to order an MRI or CT scan just to rule things out. Right now we are feeling pretty positive about things, that it is just a weird occurrence with no explanation...

The eye doctor did say if it was his child he would get her scanned...brain and body, just in case...we are going to ask Connor's doctor his opinion and go with that most likely.

It has been over a week now and she is still having double vision, but not as much jerking going on. We are simply praying!

Shameless brag!

Normally I would not be prone to posting self-pics here, but I decided to since I have suffered thru almost 2 1/2 YEARS in braces, lol! Here are my teeth as of a couple months ago-getting there, finally (whew!) I'll try and get a newer shot soon, before the braces come off for good-but I since I have been getting some requests for new "brace face" pics-here you go! Enjoy :-) I am really looking forward to the BIG day when I no longer have to worry about them. It will be funny for Connor-he has never known me without braces-to him it is perfectly normal to have a mouth full of metal. When I am all done-I'll do before and afters-what a difference!
Deb

Look-A-Likes?

So what do you all think? Here are a couple pics of Samantha when she was 3 1/2 years old (right after Connor was born)...I can look at her face and see so much of Connor! Granted-he is on mega-doses of steroids and it has changed his looks by filling out his face a lot and giving him more facial hair than most 3 yr. olds normally have, lol, but they look quite similar to me still.
Rough day today with Connor-more of the raging even though he should be calming down from them...poor Ryan and Belle are bearing the brunt of it unfortunately-lots of anger taken out on them for some reason? With Sam on the road so much now, it is really hard to keep up with the mood swings and sleep issues all by myself...it is giving me sleep issues just from dealing with his, lol.
This is the 2 year mark now for us from when we first noticed Connor's symptoms and our lives changed forever. When will I stop counting all these "anniversaries"? June will always be remembered for how he was deteriorating before our eyes, July and August for the unknown and hospital trips, tests, and fear bigger than we could imagine...and September as the soul-splitting diagnosis was given to us-followed by more test results in October, good news that his cancer was able to be surgically removed, but being told it is at a cost to his brain and entire future with the OMS diagnosis. Certainly not how we pictured the first few years with our baby boy...still-he has been more JOY than we could ever dream possible, when he smiles-we call it his "million dollar smile" :-) And his words that are just now forming are a gift to our ears and more precious than we knew possible.
Samantha has been having some eye twitching in her right eye the past few days-which has me completely freaking out on the inside, trying to stay calm on the outside...probably nothing, but any sort of eye movements to a parent of an OMS child are reason to let panic seep in. In any case, I am going to take her to the eye doctor/pediatrician if it continues...
Good-Night and please remember all our NB friends and OMS buddies in your prayers!
Deb