Ut-oh!

We awoke this morning to Connor not feeling good at all. I am not sure what is wrong, it could be a virus, or something else? Poor baby threw up badly this morning and again tonight at Nini's house. The rest of the day he seemed alright, a little quieter than usual, and still refusing to eat much at all. In fact, he didn't eat any dinner tonight before he got sick again...this evening he began pulling on his ears, so I am worried about ending up at the after-hours clinic tomorrow to see a doctor. I hope fever stays away-or some IV antibiotics might be needed (which means a trip to Atlanta since our local hospital does not want to treat him anymore)

I forgot to mention that his hearing test came back normal! He now has most of the paperwork in order to start school next year in the STEPS program for delayed children, if he is able.

Ut, oh-he is awake and wants me to lay down with him.

Better run-
Debbie

Happy Thanksgiving!

Seems like a wonderful time of year to take a minute and remember all the things in life that we are thankful for! My list is quite long-we are blessed and fortunate in so many ways. Please indulge me while I reflect on the MANY gifts in my life.

Of course tops on my list is my beautiful family, especially my husband Sam who is everything in a husband and father I could ever ask and more. Always upbeat, funny, smart beyond words, handsome, thoughtful, kind, devoted, giving, supportive, (am I boring ya'll yet, lol?) and above all a wonderful leader for our family and a faithful follower of our Lord.

Great kids-you guys are awesome and surprise me each and every day by how much you have grown and changed and matured. I am the luckiest mother in the world to have four blessings named Ryan, Stacy, Samantha, and Connor.

Now I better just start listing or this could get REALLY long (he-he)

*My family, especially my twin sister Laurie-my best friend in the whole world!
*Sam's family-Sido and Tata and all the uncles
*The town we live in...I LOVE Columbus!
*Connor's doctor's and nurses who have taken such good care of him...Dr. George, Erika, Rebecca, Dr. Berenson, Dr. Mansfield, Dr. Rauschbaum, Ellen-the best speech teacher in the world, we love you...Resa and Debbie-we miss you guys! And all the other countless nurses and doctors who have touched our lives this past year and a half.
*CaringBridge, Blogger, Carepages, etc...WOW-what a world that has opened thru these pages. Meeting all these families via the internet is life-changing and just an incredible way to reach out in such a fast-paced world.
*Samantha's school-I am SO grateful for the warm welcome she has received and the great education she is lucky enough to be getting from her sweet teachers. Thank you!
* A wonderful church that has stood by us and kept Connor in prayers continuously.
*All the support from friends and even strangers-we are so lucky to not only have Connor prayed for, but our other three children-this has been tough for them as well. (This means all of you too!) :-)
*Hospitals close enough to drive to (Scottish Rite) An amazing facility filled with the absolute best doctors and nurses I have ever met in my life.
*Playgroup-this is Connor's only chance to be around other kids and I am so thankful to Ellen & Shannon for making it possible for Connor to attend.

We enjoyed today tremendously-watched the parade this morning, Connor's favorite float was the safari one in the Philadelphia parade on a different channel than the Macy's one. He saw a giant bird on there that he just loved! Then we realized the city looked nothing like NY and that we were missing the "Big" parade and quickly change the channel. I didn't know there was more than one parade! LOL

Dinner was yummy-Mom really outdid herself this year. All the kids had their certain favorites-Stacy liked the mashed potatoes best, Ryan liked the deviled eggs and ceaser salad, Samantha liked the deviled eggs and rolls, and Connor just nibbled on a little bit of everything. But NOT the Thanksgiving cupcakes I made-I think he thought it was too pretty to eat-he just kept staring at it in awe and rearranging the toppings...I tried to get a piece off for him, but he grabbed the bit of cupcake and put in BACK on the cupcake-like to make it pretty again. Awww, so sweet!

I am tired and off to bed, but I wanted to say how thankful we are for all the prayers for our family and the support as well. Love to all!

Debbie

Oh-BTW, I saw this blinkie and thought it was adorable. It is for kids that use sign language.
Connor has the Baby Signing Time videos and that is what "signing time" means, lol.

Please keep Connor in your thoughts...

This weekend is another high-dose steroid weekend followed by the 2 weeks of pain and steroid psychosis which means hours upon hours of crying and hurting.

We have hope for this cycle though-Dr. George is putting him on a new medicine to combat the "craziness" he gets while on the steroids. Most leukemia patients who take HALF the amount of steroids Connor does, can't deal with the side effects so we feel we have no choice but to try and help him get through this any way we can.

He is making so much progress right now mentally that we can't afford for him to be physically unable to learn for half of the month. KWIM?

Can you tell we didn't want to add yet another med to his little body? But I feel this is a good move to at least try for this cycle to se if he tolerates it better. It sure can't get much worse!

He starts it a couple days before the steroids, so we give it to him Thanksgiving night for the first time. Pray that it helps him please. The poor baby is just really suffering right now and could use a break. Love to all and thanks for checking on all of us.

Have a Happy and Blessed Thanksgiving,
Debbie

Puppy Post Continued...

Seems one bath isn't enough when it comes to getting large quantities of olive oil out of doggie hair! Today was the first day of Sam's vacation and we went to Target to buy some Dawn Dishwashing liquid to see if that might "cut the grease" so to speak, lol. It did thank goodness, and Belle is back to normal. No sooner was this saga over with and Sam was pouring some old leftover Sprite out in the backyard and Belle was lapping it up. Good grief! He has got to stop this or his time off fro m work is going to drive me batty. :)

We did some Christmas shopping for the kids today and Connor enjoyed looking at decorations again at all the stores. His favorite? A giant pink flamingo wearing a Santa hat! Silly boy-he was so cute signing bird while he was staring at it in awe. The thing was tacky, but I suppose very beautiful and colorful to him.

We had a meeting at Samantha's school and afterwords we got incredibly lucky and were able to watch her class practice for the Thanksgiving play tomorrow! Yeah!!! We are still upset that we won't be there for the real thing-but this was so wonderful to get to see Samantha singing and saying her famous, "Mercy me!" line. (adorable) Aunt Kristi is still planning to make us a DVD of the live performance tomorrow while we are in Atlanta for Connor's treatment (Thanks Kris, I love u) and we will be able to all sit down and watch it together at home later this week.

Ryan and Stacy are looking forward to vacation...I think we all need some downtime right now.
Stacy will be busy finishing up her project for Science Fair, but other than that-just family stuff going on the next few days...

Thanks for the well wishes, prayers, and love. I hope I haven't hurt anyone's feelings if I haven't been as good as I should be with calls, emails, etc...I am not too proud to admit I am overwelmed right now with all that is going on mentally, physically, and emotionally-not just with Connor-but with trying to keep everything normal and fun for the rest of the family. I am struggling every day to keep my head above water with all the appts. and driving, and kids and their schedules, the house, Sam, and the businesses, etc. Please know I haven't forgotten anyone, and I am trying to get back in the swing of things after a much needed break. Love to ALL.
God Bless,
Debbie

Tree's, Nutcracker's, & a Marinated Doggy?

The weekend is just about over and Connor is doing good! What a relief after another bumpy week. The mouth issues got bad enough to call the doctor...without looking in his mouth-just by what I described to them and the kind of pain I was describing-the doctor does NOT think these are mouth sores we are dealing with. He thinks the spots I saw in Connor's mouth might be from where he possibly bit his cheek or maybe a little thrush going on which we know he has been struggling with...He thinks it is jaw pain. It makes sense-the way he is holding his fingers under his tongue, and won't eat anything but soft foods and drinks...poor baby.

So not only does he have the intense pain to deal with for the two weeks out of the month following the 3 days of high dose steroids he takes each month-now his jaw is killing him all month? He said yes, pain in and around the jawline is common. He said to give him the Vicadin to help with the pain since the Motrin isn't helping. Thankfully today he is doing much better, so maybe it is easing up a bit. I just hate all these side effects-but without the steroids-he will be back to having a full relapse and probably lose his speech, his walking, all that he has learned the last few months...

We set the Christmas tree up today! Connor is VERY interested in any and all decorations this year, so we figured a jumpstart on decorating might be a good idea. The house looks festive and ready for lots of fun-good thing because we have a couple parties coming up soon.

Samantha is having "A Nutcracker Ballet" party for her birthday this year. She is really into her ballet, can you tell? :-) I am not quite sure what we are doing at this party yet-but I have a feeling dancing is involved.

Oh, here is a funny story that happened tonight.

Sam grilled tonight for dinner, with lots of help from Samantha and Belle, when suddenly Samantha and the dog came in the house and Belle was all wet.
None of us could figure out how the dog got wet when it wasn't raining outside...as I was setting the table, Belle was running around all soggy-and the floor was getting slippery.
Then, Sam comes in and confesses what happened. He threw all the marinade the meat was in out in the grass after he put the meat on the grill!
So Belle had been outside just rolling around in his "mystery marinade" for who knows how long?
GROSS! She must have been in heaven with all those raw meat smells and the oils and spices, lol...Off to the bathtub for her! She smelled bad, and for those of you that have ever seen Sam marinate meat-you know what I mean by "mystery" :-} Probably a whole can of diet soda thrown in with the oil!

We'll be in Atlanta Tuesday, so please keep Connor and all the children in your prayers for a smooth day for all.
Thanks and love to all!
Debbie

"Playing Catch-Up"

Here it is the week before Thanksgiving already! We are looking forward to a funfilled holiday and some much needed family time doing nothing more than hanging out, decorating, and seeing family. Okay-for those of you who know me, you know all that will take place after some careful planning, school letting out, a carpet cleaning, and a clinic visit for "you-know-who" LOL But it WILL happen...

So the good news for the week is that Connor is learning new things every day. He learned how to sign Choo-Choo for his trains and is using that one a lot, he is still trying to talk and even said Bubba at Ryan this week (yeah!) and Ball at a ball at Walmart with no prompting. :) Amazing!
He is waving bye-bye more often. Just so much more aware of the world around him.

The bad news is that he isn't getting to enjoy his steroid downtime too much right now due to some pretty severe mouth problems he has had for a few days now. It started with him not wanting to brush his teeth, then not wanting to eat, and now he is screaming in pain and keeps his fingers in his mouth while crying and holding the area under his tongue.

It doesn't seem to be a bad case of thrush this time-although he has had a small touch of it for a while now, pretty common for kids with compromised immune systems...it looks like painful mouth ulcers, something he managed to avoid during his months on chemo and all the time on prednisone. There is no way we are going to be able to get him to swish and spit any of the remedies/preventatives that might be able to help him so the only thing I know to try is something like Orabase to ease the pain a bit. I am putting a call in to the doctor in the morning for advice-he can't wait until Tuesday, poor baby hasn't hardly eaten in days. Even his favorite foods.

Today me and Connor went to Blanchard to eat lunch with Samantha-it was so fun to see her with all her friends! We sat by ourselves at a little table and even though Connor couldn't eat-he really enjoyed watching all the other kids in the cafeteria. I was so proud of Samantha watching her carry her lucnch tray all by herself, she sure seems like a big girl now.

Then me and Connor were able to visit one of the STEPS classrooms where he might be attending next year. It was REALLY hard to picture him in there without me all by himself. :(
So very much to learn...I know it is what is best for him in the longrun-but my goodness, I need to pray for peace on this matter-because just the thought makes me feel weak about leaving him there.

Thanks for checking on us-
Deb

Finally Friday!

Connor hanging out at the Atlanta Zoo

The week is over and I am really glad. Why? Hopefully the next two weeks will be good ones for Connor-full of fun, playing, and laughing.

Today went rough again. I am really concerned over how hard this is getting to be on his little body. It doesn't seem like he should be hurting for THIS long every month. Today Aunt Laurie brought the kids over to play and she got to see the "before Hydrocodone" and "after Hydrocodone" Connor. Like night & day. I am thinking he should be himself again by Monday-if not, I'll have to put a call in just to get some advice on meds, etc...I don't want to overload him, but I don't want him hurting either. The doctor explained that some people really have severe pain from the steroids and for us not to be afraid to use the pain meds to help him through it-but still, I am a mom-gotta worry, right?

Not much planned for this weekend, just trying to get some errands done. I need to plan Samantha's 6th birthday party and take her shopping for a flower girl dress. She is going to be so adorable! Sam's next youngest brother is getting married in January. I can't wait to see Samantha all dolled up.

Connor had a blast at playgroup the other day. It was at the museum and he ran all over and played quite a bit in the chalk room. He was covered in a rainbow of colors, and especially liked Daddy showing up to play!

Have a wonderful weekend everyone,
Deb

Ya'll Bout Ready?

Connor as Batman at the Halloween Playgroup

Look what I made!

Hi all! I have tried SO many times to leave a post on this site-with no luck and I am so sorry to leave so many of you hanging and worrying about our little guy. The fault is mine (and our still not-totally fixed computers) but I do feel terrible for the long delay. FOr some reason our computer will not let me on to my own blog! Very frustrating...so I will try and sum up the recent events as quickly as possible.

Lets see, first of all, Connor is doing good just having a rough go of it. It has been tough for him on the steroids-tough on the whole family really-but especially Connor. Still dealing with too much pain each month, more than expected and increasing each time. Followed by a week of intense mood swings that cause him to be very cranky and tired and just plain miserable for two weeks out of EVERY month. That is our struggle right now. But we deal with it as best we can-give him the Vicadin to ease the aching joints, and lots of trial and error to see what helps from moment to moment as he rages and fusses...then, magically, we get our sweet Connor back for the next two weeks-loving, kind, sharing, kissing, hugging, smiling, playing, like a light switch going on/off is how sudden the change is...so that is one reason for the lack of time lately for most everything-we are living in two week bursts, trying to pack all the fun stuff into the good times and trying to comfort and sooth during the harder times.

We have been lucky though to be able to go do some fun things with all the kids lately though. I'll need to post pics of our outings! We went to the Atlanta Zoo, to the Pumpkin Patch, and Callaway Gardens. As the holidays approach we can't wait to do the things we do every year, like go to Fantasy in Lights and just decorating the house will be extra exciting this year seeing it through Connor's eyes. He is already interested in the decorations he is spotting around town-so the tree should be a big hit!

Right before Thanksgiving we go back to Atlanta for Connor's hearing test and regular treatments. No real game plan in place yet for after the 6th dose of Decadron is over-we might possibly extend it or he might go off of them completely. Either scenerio is scary to me, but it is in God's hands. Literally, because even the doctors do not know what is best.

And now-the best news of all! Connor has begun making a few sounds! He now says:

Da-da
Ma-ma
Ba-ba (his bottle)
Wa-wa (water)
Belle Belle (the dog)

We are so thrilled and thankful that he is finally progressing in the right direction. So far to go, but he has come from so far behind and I have to keep reminding myself of that.

We are working on transitioning him into the STEPS program with the school district for the 2009-2010 school year. We have high hopes of him being approved for at least 3 days a week. This is based on his needs, so he might qualify for anywhere from 2,3, or 5 days per week for a few hours each day. He will be able to receive his therapy while he is there, and just being around the other kids will teach him so much! Of course-the thought of leaving him anywhere is enough to send me in a panic, but I know it is the best thing for him.

The rest of the kids are well, Ryan made it into the National Junior Honor Society so he is mighty proud of himself. Samantha is enjoying ballet and learning to read. Stacy is making all A's and is excited about the Twilight movie coming out...and Sam-he is doing good too. Working hard as usual and excited for Christmas, it is his favorite holiday. Thanks for checking on us and for all the love and prayers.

Love to all,
Debbie