Hi all,

It has been so long since I’ve written.  Learning how to blog is on my “to do” list that I never seem to get to.  There is so much more I can be doing here.

I’m sure many want to know how things are going regarding Joe’s Angiogram and updates.  His doctor attended an International meeting for Pediatric Interventional Radiologists in October and brought Joe’s films with to discuss with others.  He spoke to about 50 other doctors and there are probably less than 3 cases of this disorder ever seen by the members and only 1 case reported in literature.  Nice.  Let’s just throw another wrench in, huh?

Again, the good thing is that it isn’t causing problems.  The down side is that there is nothing to go by in terms of treating this if it does cause issue.  So, let’s hope and pray that we never have to cross that bridge!

On a business note, I am currently researching going Non-Profit with The Special Needs Store.  It really opens up a ton of options for us and what we can offer.  The initial thought is to be able to offer “mini - grants” for families who need products and just can’t afford them.  I’ll be putting a lot of time into researching this in the next couple of months.  I think it would be a really fantastic way to run the Store.

Take care,

Kelly

Hi all,

It’s been a while since I’ve written.  I’m super swamped getting ready for the MN State Fair.  Please come visit us in the lower Grandstand - Booth 93!  We’d love to see you and we’ve got some great Fair Specials!

Angiogram:  Well, we finally got this one behind us after an entire year of wondering what we are dealing with.  It went well.  Longer than expected, but Joe did outstanding.  What a little trooper.  The nurses all loved him and they taught him how to “blow it up” with a fist hit and then open your hand and say AAAHHH.  Pretty funny, but Joe loved it and is still doing it with everyone.

So, we were able to get the pictures they needed to see what is going on.  Basically, he has a very large, complex vascular malformation in and around the left lobe of his liver.  The good news is that it is relatively isolated and doesn’t seem to be effecting the surrounding organs and their function.  Joe’s Dr. is of the mind that we just leave this alone and continue to monitor it, as well as his liver and heart function on a yearly basis with an abdominal ultrasound and echocardiogram.  Whew!  I am all for this route.  Remember my earlier post in that I was afraid we were opening a can of worms with this?  His little body has adjusted to this malformation.  If we go in and try to “fix” something, what other problems are we going to create - and potentially extremely serious issues, like Portal Hypertension - not good.

So, that’s it in a nutshell.  I hope and pray that this continues to be a non-issue for him and in the meantime, we will continue to keep a watch on it.

School is fast approaching and I am as ready as possible for it.  I’ve got lots of notes to jot down yet for his teacher and paras.  I’m sure they will be sick of seeing me as I’ll be in a lot the first month of school.

Thanks to everyone who have kept Joe in their prayers.

Kelly

Hi all,

Well, both kids have come down with the flu (suspected H1N1).  It’s been a long week in our household with grumpy, sick kids and confined to home with no friends to play with.  Thanks goodness they have each other to play with.

Joe’s Angiogram is now cancelled for this Wednesday.  He’ll probably be fine by then, but I don’t want him to have secondary complications from the flu or the angiogram with his immune system already on low ebb.  The contrast dye that they need to use concerns me.  The last time he had this after his CAT scan last August, he ran fevers, had diarhea, and was really NOT himself for about 3 weeks after.

So, we’ll reschedule.  Hopefully in a couple of weeks.  Isn’t it odd that the doctor called this “elective”.  I mean, if he has a malformation and they need to do the test to diagnose exactly what it is and how to deal with it, how can that be elective?

I’ll keep you posted.

UUGGGH!  Do you ever wonder why things must be so difficult?  Maybe I am making it more difficult than it needs to be?

It is that time of year to plan for next year’s school plan.  We had planned on Joe going to Kindergarten for 2 years for a wide variety of reasons.  The main reasons were we started him as a very young 5 because we wanted him in a more skill based program than preschool.  The year has gone well in Kindergarten, so I am comfortable that we made the right decision.  So, do we continue with our plan to repeat Kindergarten or do we move him on to 1st grade.  He is so close to Kindergarten skills and we thought it would be good to give him an extra year to solidify those skills and to add some maturity before moving on to 1st grade where more of the curriculum will be above his head and there is more desk work.  But, how important is it to keep him with his class and the friendships that he is developing there?  Would he do better in a more structured environment?  The list of questions goes on and on.

I think all parents go through this.  What is the best decision?  Am I second guessing myself?

I have to say that I am really tired of thinking about this.  It keeps me up at night worrying about making the best decision.   Then my rational self says, do the best you can with the system offered and have faith that it will all turn out for the best.

I’ll be glad to put this one behind us!

On another note, some of you may have seen my post in December regarding Joe’s upcoming Angiogram.  We finally have a plan to go ahead with the angiogram in early April.  I’ll be sure to keep you updated as we find out more about his condition.

Have a great day, and keep the stress low in these tough financial times!

Hello all,

Well, we got through the holidays.  The kids have been busy playing with the new influx of toys that they received.  Joe would still much rather have a movie than anything.  I’ve started putting a blanket over the TV so that he knows when he is allowed a movie.

He has 2 new favorites that I am thrilled he is interested in.  One is the Fisher Price Computer Cool School.  He has already figured out how to plug it into the UBC port on my computer, turn it on, sign in under his name, and completely navigates all of the activities!  Smart kid!  One of the things that I really like about it is that it has a pen which he has to move the curser to what he wants and press down on it.  Talk about a great motivator to work on hand/eye coordination and pressure for handwriting!  I’ve really been at a loss as to how to get him to work on this type of activity because he just isn’t interested.  This one was worth every penny as far as I’m concerned.

The other new one is the Leap Frog Tag Reading system.  We have a couple of books and I specifically picked out books that are related to movies that he likes, such as Kung Fu Panda and Cars.  He will sit and page through the books, using the Tag Pen, and pressing on all kinds of things in the books while he giggles at the funny sounds and pictures.

I look at him sometimes and am amazed at what he does!

It is fast coming up on registration time for school next year.  After last years fiasco in placement, I am really hoping that things go smoothly this year, but I’ve got a bit of a sinking feeling in my gut about it.  So frustrating!  He is going to repeat Kindergarten (which was our original plan).  The trick is going to be getting him back into the 5 day a week program.  Our school district does not have 1/2 day Kindergarten, but offer an alternating day program.  With the therapy schedules, alternating would be a nightmare of scheduling and would ultimately cause days missed at either school or therapy.  The 5 day a week program is a lottery and is fee based, but the money spent is well worth it to be able to have a consistent schedule every week.  We’ll see what happens.

I’ve rambled a bit today.  So many new things going on.

My thought for the day:  “They can because they think they can.”  Virgil

It is amazing to me that I can look at next month and say, “things look calm - not much going on” and by the time we get to that month, the calander is full once again.  We’ve been super busy with Thanksgiving and Christmas as most people are.  January looks not bad and we are going to try to keep it that way.

As we approach the new year, I find that Joe’s upcoming medical proceedures are weighing on my mind.

For those that don’t know, Joe had an Echocardiogram last summer to check on a small hole in his heart that he was born with.  The great news is the hole has closed and things look good.  The cardiologist happened to notice a “color signal” near his diaphram.  This led to an abdominal ultrasound, then a CAT scan, and another abdominal ultrasound.  Poor kid.  We found out that Joe has a congenital Vascular Malformation in and around the left lobe of his liver.  This really blindsided us.  I guess we thought we were past the stage of finding out medical problems like this.  The good news is that he does not show any symptoms and we found this before it has caused problems.  So, we spent quite a bit of time researching and finding a Pediatric Interventional Radiologist who is currently working with us.  The next step in this saga is an Angiogram which will be scheduled sometime after the 1st of the year.  This is not urgent (which is fortunate), but something that will need to be addressed.

I look at my little guy and it just seems surreal that there is something wrong.  Then all kinds of scenarios go through your head about what could happen (just like during any proceedure).  We’ve really tried to just put this on the back burner since August, but as I mentioned, as the first of the year approaches, I find myself thinking about it more often.

Enough of the worry stuff.

We’re all ready for Christmas and the kids are excited for Santa.  My 3 year old has been on her best behavior in anticipation (thank goodness!).

I hope everyone has a safe and happy holiday.

Kelly

I’ve never blogged before so this should be interesting.  Since we got the new site up, it’s been crazy.  I spent most of the week of the 27th of October at the International DEC conference in Minneapolis, Minnesota.  Feedback on the store was terrific and I made many contacts that will hopefully pass our information on to the families that they work with.  I had family in to visit last week and then was laid low over the weekend with a kidney infection that still has me down.  Hopefully I’ll be up and running again soon.

I’m thrilled to have the classified section up and can’t wait for people to start discovering it.  In particular, the gently used section.  As a parent, I know how much money we spend on products for our kids, so this should be a huge resource to help others find products at lower costs as well as resources for other products  in the business sections.

It’s been a crazy couple of weeks getting caught up on the new site, orders from the DEC conference, and simply daily life with 2 young children.  Joe (my little guy with Down syndrome) is doing wonderful in Kindergarten.  I couldn’t be more pleased and his classmates have completely embraced him!  Amazing how loving children are!!

I’ll keep you posted on new stuff as we go along.

Kelly

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