Wedding Fun

Here are some pics from my BIL and new SIL's wedding last weekend. Sorry I don't have one of them together (coming soon I hope) but my camera decided to misbehave that day (Agg!) Samantha did an awesome job as flower girl and the ceremony and reception were so beautiful. Stacy & Ryan were wonderful as well, not always easy at a very long reception, etc...they hung in there and had fun too.
This was about the last time Connor put clothes on this week-he has decided footie pajamas are the in thing right now and is refusing to get dressed at all. :( We haven't been forcing him since it is steroid week and we know he is hurting from all the joint pain he gets-heck, I'd probably wanna wear footie jammies too if I felt as bad as him, lol. So if you saw us this week and thought it odd the way he was dressed, that is why. Hopefully tomorrow he will feel like getting dressed...
Right now we are just enjoying the weekend and preparing for a busy week ahead. Another trip to Atlanta (I know, ANOTHER!) for Connor's eye exam-yet another requirement for his entrance into the STEPS program here in town. We are in the process of tryingto find the best possible school to send Connor to after he turns three. It is difficult because there just are not many options around here for special eduacation-either the public school system or a couple other possibilities. One of which already rejected Connor because he does not have autism-their specialty. I am going Tuesday to tour a "potential" school for him-but as of right now, nothing is known or decided.

Keep praying,
Deb

What a Champ!

Connor has had a really tough week so far...just extra cranky, with a destructive quality along for the ride as well. Not sure why-who knows, maybe he is just bored since we have been home a lot this week. (Samantha missed Monday & Tuesday from school with a cold) He has been great though about taking his pills, and also eating well, walking, and doing quite a bit of sign language. WTG Connor!!!
Thursday is a busy day again-speech therapy, playgroup, some errands, and lots of driving. The pic above was taken at the clinic last week-he was hamming it up for the camera, can you tell? :)

Love,
Debbie

Some Birthdays Comin' Up

Look who is turning the big ONE next month. Oh-how the puppy days have flown by! Belle is still a handful-but a sweet one (most of the time anyway)

Also, Ryan and Stacy are going to be 14 on Feb. 28th! So hard to believe they are getting so grown up. When did that happen?

Connor had a good day today. I didn't-but it happens, you know? I think I am to a point that I feel like putting a sign on Connor so people will quit asking me what is wrong with him...it has gotten really hard to go out without incidents arising every time. I don't mind explaining his condition at all-in fact, watch out, I might talk your ear off, lol.

It is the thoughtless remarks that are bothering me. He is a beautiful child, and we love him for who he is right this very moment-and that will never change. I see confusion, fear, and pity in people's eyes when I wish they could just see what I see...Connor. As he is, imperfect in some eyes, but still as much of a blessing as any other child-maybe more.

Maybe this is a good reminder to folks to try and see the child-not the disability. Look in their eyes, smile, just don't stand there and ask me when is he going to talk or what is WRONG with him in a way that implies that he is "damaged goods" or bad in some way.

We appreciate all the love, prayers, concern, cards, calls, and most of all friendship through all this. I hope this doesn't offend anyone-most everyone has been wonderful to us. I never knew such kindness before-from the men at our church who pray for Connor everyday, to the strangers who hold doors open for me as I struggle to tote an almost 40 pound toddler who can't walk off and on. I just want him accepted for all he IS-not looked at for all that he isn't. (Yet)

I might have some exciting news to share soon about something I am looking into for Connor. I'll share more when I know more-don't want to jinx it (hee-hee)

Love to all and thanks for checking on us,
Deb

He's walking!

After his treatment last Wednesday in Atlanta-Connor started walking again on a much more regular basis. I am keeping a careful log of his treatments and walking vs. crawling-so we can get a better idea of how he is doing. It seems the IVIG is REALLY helping him more than we knew since he had his infusion and within hours started walking and now five days later-still no crawling! :) What does this mean? Well, possibly longer or more often treatments? We have no idea, but it sure is nice to see him on his feet. Even at his usual crawling place (playgroup, Nini's house, etc) he has been doing awesome. Also, walking in parking lots again and the yard thank goodness.

Not sure how long this will last...he started back on the Zyprexa today and Wednesday is the next Decadron cycle. Please keep him in your prayers for an easy time with it-it is so rough on him to be taking these steroids.

We have been busy celebrating my BIL's marriage to my new SIL Magdalena! The wedding was beautiful and we had a blast. (Pics to come!) My camera decided to go batty on me and take fuzzy pictures, but I have a few good ones to share. Samantha was a doll as the flower girl and enjoyed every minute of it-well, except the hair pins maybe, lol.

Stacy & Ryan are still waiting to hear if they got into Columbus High or not (pray) The next round of tests for them will be the 21st of Feb at Hardaway. Maybe we will hear good news before then and they won't need to go? :) Hope so! We are also planning a trip to Seaworld around that time, so it would be nice if it was a celebration vacation, right?

Sorry for the lack of updates, just too busy with little guy to get on the computer much...also, with paperwork for STEPS, Katie Beckett, the insurance, appts.,etc...it goes on and on.

I checked out Braeden's page earlier and he is still hanging in like a trooper. Stop by his page if you can and leave his parents a note, they are suffering so terribly right now. So many prayers for this precious boy, may God hear them and ease all of their pain.

Love,
Debbie

Our OMS friend needs prayers....

Hi to all who come here to read and check on Connor. We love you and want to keep you posted on another little boy's struggle that is getting harder and harder for him. His name is Braeden and he is 3 years old and he has OMS like Connor and so many of Connor's online friends-but his neuroblastoma is stage III , high risk and not much is left to do, but send our prayers for peace for Braeden, and strenghth for his family. Here is the latest blog entry on Braeden's condition.

"Hello friends and family, I know you all have been anxious for an update and I am sorry for the delay, it's hard to write it this time. I am sorry to have to tell you all that Thursday's CT showed no real change in the tumor, and Braeden's blood pressure has gotten worse. It breaks my heart to say that at this point there is nothing more we can do than work to keep him comfortable and keep him feeling well and happy for whatever time we have left. He had the nerve block done yesterday, and will have the ablation done Monday (to kill the nerves permenantly). This will hopefully keep him pain free without the epidural. We are working to get back down to the 7th floor and hope that will be early next week. Yesterday the big kids were up and Braeden was happy, talking, and playing with them. It was great to see.

I want to share with you a verse that has been special to me these past months. Hebrews 10:23 says, "Let us hold fast the confession of our hope without wavering, for He who promised is faithful." God never promised us this would be an easy journey, only that we would never walk a step of it alone. He as been with us all the way, and through you all we have seen Him daily. You have been his hands and feet and we are blessed by you. He also promised healing through His Son, either here on earth or in heaven with Him. Braeden will be whole, he WILL be healed, and he will be happy.

I will post more about visiting in the days to come. We appreciate your patience and understanding. Also, please continue your prayers. Pray for the hearts of all who love Braeden, that God would heal them, and pray for continued strength for us. God bless you all."

God Bless You Braeden...What a fighter you are and so brave too! So many people are praying for you because you are so special-not just to your wonderful family, but to all of us whose lives you have touched with your sweet smile and courage you have shown in all you have endured. We love You Braeden!

Debbie

Please pray for Braeden...

I have continued to add to my list of links on the right side of this page of all the kids I can find fighting OMS (opsoclonus myoclonus syndrome) Some of them have also had to battle neuroblastoma and its own set of difficulties. Recently I heard about a little boy named Braeden Burgess, who is battling OMS along with Stage III high-risk NB. His family could really use some extra prayers right now, as Braedon is not doing very well. Here is the link to his page so you can meet this gorgeous little boy.

www.carepages.com/carepages/BraedenBurgess

Today was a busy day for us-just running errands and getting ready for the weekend to start. We have so much to do over the next two days! Tree has to come down before Connor officially kills it, lol (it is an artificial tree, but it has taken some severe abuse) :) Along with cleaning out the garage and hanging some shelves in the playroom-not much else planned.

Ryan and Stacy are beginning their own battle-getting into high school! It sure feels like a fight anyway, with all the applications and testing coming up. So this weekend is for filling out paperwork and next weekend the BIG TEST! They both have their hopes set on getting into one particular school and it is going to be devastating if only one of them gets in. So please, if you can spare the prayers-maybe one for them that they BOTH make it in? It is SO competitive, and hard on such young kids if they get rejected.

Love,
Debbie

Providence Canyon Trip...

On New Year's Day we went out to Providence Canyon. It was freezing cold, but me, Sam, Connor , & Samantha still had a great time. We went last year and I guess now it has become our New Year's tradition. It is such a cool place with beautiful scenery. Connor spent most of the time there in the stroller-but he did sneak out of it for about a total of 5 minutes! :) Here are a few pics of our day.










Thank you to everyone that has called and sent sweet and supportive messagages to us after our rough time the other day. Poor Connor had enough of the questions I guess, because ever since Tuesday, when I ask him where a body part is-he shakes his head and refuses to answer! LOL I guess they got on his nerves a bit? Haha, made me laugh anyway and I needed that.

Love to all,
Debbie

TEST DAY

We got there this morning and Connor was being an angel. Sitting in his stroller (his "safe" spot) and they finally called us back. We go to a VERY small room.

STOP HERE! Just so you know...I was picturing a big playroom and the doctor playing with him and getting to know him, and through this play he/she would see what a smart, funny, and kind-hearted kid Connor is then Connor would be scored according to how well he understood/performed tasks. Not a great score-but not an awful score either.

NOT HOW IT WORKS is what I found out. This is the real world. Doesn't matter if you are sweet and nice-it just matters if you understand the stupid test.

The doctor is incredible. Probably the nicest man working with kids I have ever met-funny, patient, gentle. Connor loved him! As we entered the impossibly tiny room, I got my first twinge of panic. What are we doing in here? How can they possibly expect Connor to DO anything in here but to try and escape? (Picture large bathroom with a desk and few chairs)

The plan we are told is that Connor will sit on one side of the desk and the doctor will ask him different questions. He doesn't have to speak for these questions-he can point, touch, show, gesture towards, etc. It only takes the doctor a couple minutes before he gets a puzzled look on his face and he says, "This isn't going to work."

You see, Connor doesn't really know how to answer anything, he might smile at you or do something funny-but those were not the kind of "answers" the doctor was looking for. He isn't able to look at pictures and show you where anything is, or books, or even things in a room. Then the doctor tried to ask Connor his body parts...That was hit/miss as well. Okay-mostly miss. He did get nose right, but Connor can't help it-he just gets them all mixed up. He seems to know that parts of your face are called SOMETHING-he just has trouble remembering what it is for each.

I was given a long form (10 pages front and back) to fill out while the doctor continued to try and get Connor to respond to anything really. He was mostly just killing time because he had already called for reinforcement from another doctor to come administer an easier version of this developmental testing (the infant to toddler version instead of the preschool one) Connor succeeded in stacking some small blocks During this time I was asked about his speech therapy history and other questions about what he can and cannot do. Eventually the other doctor arrived.

Another nice doctor-SCORE! At least Connor is liking both these guys he is supposed to impress, right?

Here is where it got depressing for us. Right away the doctor was confused why Connor wasn't used to sitting at a desk for therapy type play. He was told Connor had been in speech therapy for over a year. Yes, I told him that he has been-but that it is not a desk setting. It is at home and the therapist follows his lead on what to play with and she gives me instructions for what to work on with him until the next visit. That is how the program works in our city. It sounded lame even to my own ears. I don't fault the program Connor is in-his therapist loves him and fights for him to get more time with her...but most kids are seen every two weeks and for 30 minutes. Just long enough to give directions to mom on what to work at home-so in a sense-it is more like training the mom than teaching the child. Connor is one of the lucky ones seen every week-but even this hasn't been enough to truly help him reach a more functional level for his age. It is impossible under these brief sessions to accomplish very much.

So now that the doctor realizes Connor is new to this way of doing things and not the experienced pro they thought he was, lol, he decides to let Connor get comfortable and start over with a new approach. This time Connor is sitting on Sam's lap and the doctor is able to get through a few of the tasks he needs to rate Connor on how well he is able to do it. He is going to show Connor how to do something, and then see how long it takes (if ever) for Connor to do it on his own-then he scores him. Here are some of the tasks Connor had to do-there is no way I can remember them all-but some of them surprised me that he could do and some of them surprised me that he couldn't...

-Stacking blocks
-Stacking cups
-Draw a line with a crayon on paper
-Open a book and flip the pages
-Unscrew a toy bolt from a screw
-Put penny's in a piggy bank (two directions)
-He laid out some simple objects on the table for Connor. He had matching ones on his side. He would hold one up (a key for example) and tell Connor to show him his key. Then he moved on to the other objects to see if Connor could do them.
-Body parts again (several different ways) When Connor didn't answer where his hair is-the doctor pulled out a brush to see if Connor at least knew WHAT to do with the brush. Body parts on a stuffed animal...
-Show me ______ . (Connor was supposed to point/gesture towards object)
-Two cups. Put a block in one and a spoon in the other. Then he would give Connor either a block or a spoon and see if he would put it in the right cup with the same object.
-Shoestring and 3 large beads with big holes. He showed him how to lace it and Connor had to follow.
-Ball and a cup. Connor had to toss the ball into the cup after the doctor showed him.
-Steps...if he could go up and down steps.

Connor was able (eventually) to do all these tasks-except stacking the cups and those darn body parts.

Anyway-you get the idea...there was no time limit and the doctor repeatedly showed Connor how to do something if he couldn't. When all was said and done, Connor measured 2 years behind. TWO YEARS! The final report will say more and his understanding is that of a 22 month old-but his speech is so very far behind.

The doctor seemed saddened and appalled at the lack of services Connor is receiving with this severe a delay. He also pointed out that it should be looked upon as a rehabilitation, instead of a delay, since he had so many of these milestones before he got sick. He said he would qualify for occupational therapy as well-but since he so desperately needs the speech therapy more, that we should concentrate on getting him as much ST as possible. He even recommended 5 days of ST per week. Funny that our insurance won't even pay for ONE session!@##

So that is where we stand-EXACTLY where I knew we were-it just felt different and sad hearing it again. I was so proud of Connor for all he WAS able to do today, six months ago he wouldn't have been able to do any of it. So I will keep counting these small blessings and just enjoying EVERY minute with him. How could we not? He is our joy.

So proud of our guy...

Connor had his neuro-psych developmental testing done in Atlanta this morning. Good day for him (no pokes!) Very nice change from the usual routine. :) I don't want to go into to much detail until the final reports are in on this mornings events (should be about 30 days until we get everything back) but it was about as we expected, maybe a little worse. Just so hard to hear, and type, things you don't want to be going on with your baby...Our guy is very behind as we already knew, but as you can imagine-we are still having trouble with the "accepting area" of all this. Hearing (and seeing) with our own eyes, as he struggled to do simple tasks, was heartbreaking to watch. All we can do is continue to love him, pray for him with all our might, and enjoy him. Oh-and a bit more...

Tomorrow begins our battle with our insurance company over getting coverage for Connor to begin new therapies locally. Also, today was step one in our fight to try and get Connor covered under something called The Katie Beckett Waiver. This waiver enables severely disabled children and adults to be cared for at home and be eligible for Medicaid based on the individual’s income and assets alone. Without the waiver, the income of legally liable relatives is counted when the individual is cared for at home. In other words-if you make too much money to qualify for Medicaid-you might qualify for this...but it is VERY tough to get approved, and some families are turned down several times before being approved. But if we do get this waiver-ALL of Connor's bills not covered by our insurance would be covered. This would be a huge blessing for Connor, he would be able to have as much therapy as he needs-and as recommended for him by his expert team of doctors, instead of by an insurance company who doesn't want to pay for any therapy at all...

Thanks for checking on us. Please keep praying for Connor to do well-that means more to us than anything.
Debbie

Sorry no new posts...

I caught a bad cold and haven't been able to be on the computer much...but check out the slideshow above of our December fun if you get a chance. It has music-so you might want to exit blogger after you open smilebox. More later! Hope everyone had a wonderful new year.
Debbie