Cardiology Update - Mostly Good News

I have been talking to K all week about this cardiology appointment & what will happen. Usually when I prepare her this way, she behaves very well.  Even at age 2 when she didn't like strangers to touch her at all, she still lay there & was quite good about it for the full 45 minutes or so that the echo cardiogram takes.  Yesterday had a rockier start.  From the moment the technician put the jelly (is that what it is called?) on her chest, K started crying & complaining that it hurt.  For a while, I didn't think she would calm down enough for the test to be completed, but thankfully the technicians were very patient & my husband & I both were there to calm her.  K insisted on sitting up which made it a little more awkward, but eventually they got quite a few good images.  Every once in a while she got upset again, but when we asked her to take a deep breath, it  seemed to help her calm herself & eventually they were able to get enough clear images & the echo was done.

One thing that I appreciate about cardiology is  that we get to talk to the Dr. shortly after the tests are done rather than have to wait a week or so like with many other tests.  The news was mostly good.  The VSD & cleft valve have not worsened at all.  The bad news is that he feels that the VSD will not close if it hasn't already.  I was really hoping that it would be healed when they checked today.  The good news is that because both problems have not worsened & are not leaking any more than they did when she was born, he feels that they will not worsen.  Because her heart will continue to grow as she does, the leaks will be smaller in relationship to the size of her heart. He does not think she will ever need surgery!  That was so comforting to hear.  She will need another check up, but not for 2 years.

As we were about to leave the cardiologist asked if K goes to preschool - he said it is really good for kids with DS to have that kind of stimulation. I hope Dr. K didn't realize that I had such an amused smile on my face!  I didn't have time to really go into details, so I just replied that yes, she does & that just yesterday, we went to the library program as well as swimming after as well.  I guess I should share a little more about our neurodevelopmental program, but time just didn't permit.  My husband & I had a little giggle about this after.

And the funniest part of the day?  K had a couple of nurses & the whole waiting room in stitches when she yelled "WOOHOO"  as we left!  She was definitely glad that it was over......................me too!

Cardiology & Comfort Food.

I'm drinking my current favorite, double spice black chai tea & eating chocolate  - my all time favorite as I write this.  In the morning, K has a cardiology appointment -  I always hate this day, so today is one of those rare days that I am in need of comfort food.  Usually chocolate & tea are just for pure enjoyment! I have no reason to suspect bad news & the optimist in me always hopes it will be surprisingly good news, but I know I won't sleep as well tonight & I know I'll be on pins & needles a bit until we hear how she is doing.

When K was diagnosed with T21, her pediatrician sent her to a cardiologist, saying that he was quite certain they would not find anything, but it needed to be done just in case.  As it turns out, they found an ASD, a VSD, & a cleft valve.  Thankfully, the ASD closed on it's own within the first year.  The VSD seems to be closing very slowly, but that darn cleft valve I am told will not heal on it's own.  But again, I'm an optimist, so I still think that there is a chance :)!  One of my biggest worries is that at this point the repair requires open heart surgery.  I am always keeping my eyes open for news that there is a new procedure that is less invasive, but so far this hasn't changed.

Now, although I am complaining tonight, I do need to say that we have been very blessed with K's good health.  Heart problems & all, she is a very healthy kid & I am always very thankful for that, but if you have a moment, say a quick prayer that it goes well or send us positive thoughts for tomorrow.  I'll let you know how it goes.

I've got to go now.................the kettle just finished boiling again!

Thanks
Laura

31 for 21

During the month of October, I will be taking part in the 31 for 21 blogging challenge to raise awareness for Down syndrome.  The challenge is to blog each day for the month of October - that's right, you get to listen to me ramble every day for the whole entire month!   I think it is a really neat way to raise awareness for Down syndrome.  If you also blog, this is your invitation to joing me!  Here is a link for more information:

The 5th annual 31 for 21 challenge

A few interesting facts about K

K is 4 years old & going to a typical preschool for the 2nd year in a 3/4 year old program.  She loves school & talks about her teacher & friends constantly. Sometimes she even insists that we sing & do some of the actions in the songs she learns at school.

K is doing better with safety rules such as being careful in the parking lot & around vehicles & will now wait on the sidewalk while I load groceries & that sort of thing.  She is a farm girl, so doesn't get as much practice with this, so it is  nice that I can start to trust her to be careful.

Her favorite TV shows are Super Why & animal shows like Zoobamafoo.  She is a whiz on the iPad & although she uses it for games a lot, lately she usually turns on the tunes first!  She loves listening to the same modern country & rock that her big sisters like - she does listen to kids songs sometimes, but it seems to be getting less & less often.  She has even stopped watching Signing Times - she gave up signing over a year ago, but still watch the movies for entertainment up until 5 or 6 months ago - my llittle girl is growing up!

K took swimming lessons this summer & between that & lots of practice after, she can now swim 8 or 10 feet independantly with her head in the water & without any sort of floatation device.  It is a great skill for her, but a little scary for me as she is a little too confident.

K's favorite color is yellow.

When we order out at a restaraunt, her request is always "I want fries & pizza please", but at home her first request, at least for snacks, would probably be berries (of any kind), Annies organic bunny crackers or SnapPea Crisps.

Lately, K has to jump off of everything - the bottom of the stairs, curbs, out of the truck, - you name it! If she isn't jumping off of things, she is climbing up them - why would you climb through a fence when you can climb over, right?

K continues to love books & her reading is improving all the time.  She even read an easy story that was her 3rd grade sister's homework the other day.

She loves pretend play & her Little People & Dora go on quite a few interesting adventures.  She also loves her babies & is a good mommy to them!  Lately, she seems to be getting attached to a Raggedy Andy doll that my Grandma made - some days her & Andy do everything together.

K has always been quite shy with strangers, but is finally getting  better in the last 6 months or so & will at least say hello to someone she doesn't know.  Somehow, she has always managed a flirty good bye though!

K is as determined as ever, & somehow, as the youngest member of the family, her sisters all unanimously agree that she is the boss!

More Thoughts on Math - & another program already!

K's ND has recommended a new math program.  She briefly explained it to me the other day & I am very excited to get started! I wasn't really planning on getting a 3rd program, but this program really makes sense to me.  It is really neat how it uses a very simple concept to teach basic math right up to more complicated equations.  Here is a link:   Early Learning Foundations Level 1

BrillKids Math Program

I have had a copy of BrillKid's Little Math for a few months now - Thanks KL!  However, I have had some major computer problems & could not load it on my old computer.  About a month ago, I purchased a new laptop & installed Little Math & have been using it quite regularly since then.

K has already seen Doman dot cards from one to about 80. This is how the math program starts out, so we are reviewing, but going quite quickly.  It has been a while since we did the math dots, so K does not seem to mind the review. 

If you have a very young child, this program is ideal for doing the dot program.  Because it is computer generated, the dots are always random as compared to doing them on cards where each number is always done in the same pattern.

Again, just like the Little Reader program, I love the flexibility of this program.  To keep K's interest peaked we have downloaded neat icons like Minnie Mouse & Blue's Clues.  I like that this program goes right from Doman style dots, to simple addition, subtraction, multiplication, division, right up to multistep  equations.

I have not found it too hard to keep up with K's reading program, however math is another story.  I am pleased to say that since we started with Little Math we have been able to be quite consistent.  It is just so easy!

The math program includes math dots, numerals, addition, subtraction, multiplication, division, multi step equations and more.

Here is a link:  Little Math

Numicon Math

We are using Numicon Math in combination with BrillKid's Little Math. I like that it is a hands on program. It is quite pricey though, but we were fortunate that we received some specific funding for it.

 

Having fun with Numicon Math

There are so many combinations of things you can do with it!  My kids were just having fun using them like blocks in this picture.

There is quite a variety of ways in which you can use this program as well as a number of different activities.

Here is a link to their website: Numicon Math

 This program can also be purchased through DownsEd.

It's Math Time!

As much as possible, I try to make math a part of everyday life.  Just now, after she had finished her snack, K asked for more crackers. I asked her how many she wanted & she responded "I want 4 crackers please", so we counted them out. Of course, she wanted 4 more crackers several times, but she got counting practice each time:)

Especially when K was little, we counted everything - stairs, food, toys, etc. We talked about her 2 dogs & 3 sisters. 

 

Baking is one of the most natural ways to include math into everyday life. Measuring, using fractions, counting eggs, etc.


As for math programs, right now, we are using a combination of BrillKid's LittleMath & Numicon math.  I really like both & think it is a good combination.

My next 2 posts will be on Numicon & Little Math.

Another Longvida Curcumin Update

I have posted about Longvida Curcumin (LC) before, but I think it is time for an update - I love this stuff!  The last time that I ordered, I purchased 3 bottles to be sure that I did not run out.  I must have put the 2nd two bottles away very carefully, because I still can't find them. Grrrrrrrrrr...............  I kept thinking they would show up, so I put off ordering more.  Finally, a few weeks ago, I gave up & reordered.  K's speech, while still good for her age, was just not where I knew it could be.  She was struggling to find words at times & was not as clear as before.  K was still speaking in sentences just like before, it just didn't seem like speech was flowing as easily as it had been.  She was off of it for at least a couple of months.

K has been back on LC for a couple of weeks now & it is such a relief to here her speech flow easily again.  I had found myself getting frustrated (with myself) at my inability to understand her at times & realized today that her speech clarity has greatly improved. I started writing down some of the things she has said this morning.  These are just the first few quick examples that I wrote down, and she will often speak in longer sentences or say more complex things:

"Can I go to school too please?"

"You stand back & catch me."

"Mommy, you're hair is brown - Wow!"     ( I finally dyed my prematurely gray hair - it was after she went to bed.  It was so cute that she was so surprised that I had brown hair lol!

``Mommy, look, I dropped it, it fell.``

Don't ask me where she got this one from, but this morning while we were doing her BrillKids Little Math program, one of the icons was obviously not grown up enough so K said "This is for babies!" ..........can you tell she has big sisters? lol  

Most of the time K can be understood by anyone, when she can't, it is often because she is speaking too quickly.  She talks well enough that since she was about 3.5, we have been allowing her to order her own meal & drink at a restaurant.

I have read that LC is not recommended for kids under one year due to possible gastrointestinal issues, but  like everything, you should research LC for yourself to be sure it is appropriate for your child.  

I buy the powder because K is too young to swallow capsules.  Many people just open the capsules, but they are packed so tightly that I found it quite difficult to do.  The risk to buying the powder is that is can spill more easily, but it is well worth the risk to me if I don`t have to fight with those pesky capsules! 

K has been off of LC a couple of times since we started last winter. Each time we have put her back on it, we have seen definite changes within a week.  Even my older girls, who had no idea what this supplement was about, all commented on how much better she start to speak.   

It is recommended that LC be given in the evening, however my daughter will be up half the night if I were to do that, so we give it in the morning.  My understanding is that this is not an uncommon reaction.

For more information on LC, here is a link to the website that I buy it from: NuTriVene

Here is a link to all of the posts labelled Longvida on Qadoshyah Fish on her blog Got Down Syndrome: Got Down Syndrome

Here is a link to a very informative post written by Andi Durkin of Down Syndrome: a Day to Day Guide: Andi's blog on Longvida Curcumin

We have just returned from a rafting adventure!  Be prepared for a picture overload.  We had a wonderful time - beautiful weather & scenery, family, friends, & lots of good times!

 

 .....and we`re off!

The scenery was spectacular!

Hanging out with her cousins.

 At this point, the river was totally blocked by some fallen trees.  Luckily, after a short portage, we found an alternate route.  We wound around the long way, but were soon back on the river again.

This is the view from the other side of the log jam.

We enjoyed the thrill of a little whitewater now & then!

 skipping rocks

 

Who was in charge of bringing plates LOL!

 Gold pans hold a lot more salad than a plate anyways!

 We stopped for lunch on this island

 Mmmmmmm..............what better breakfast can you have than freshly picked mountain blueberries  We also cooked bacon, toast & eggs, and K enjoyed those, but certainly had her fair share of berries!

A little fishing before we went home - not me!  My husband & kids didn`t catch anything, but they had fun. 

Indoor Activities?

 I was reading a blog of another mom today, & on post was about how they had brought their slide inside so their daughter could get more use out of it.  I had to giggle as I read the post, because we did the exact same thing when K was young.  She has outgrown her slide now, so it usually sits outside for other little kids that come to play.

We have however, moved on to bigger & better things;)!  I donated some items to our local thrift store the other day & made the most exciting find!  It was a treasure that was marked at $15.00 mainly because they had no idea what it was - actually, they thought it was a playpen.  We have been using a set of outdoor monkey bars for brachiating practice this summer & have already purchased the materials to build a Doman style brachiation ladder.  When I saw this, I was thinking that maybe I could somehow take it apart to use for the ladder.  Once we put it together, those plans changed - it is too cool to destroy like that, so I will still be building the ladder.  Anyways, here is a pic of K playing on it.

Isn't this awesome! This picture was taken outside the day that I bought it.  My oldest daughter helped me put it together & figure out that it was not a playpen, but actually a cool fort to climb all around & a platform to climb up to! It really is meant for indoor play & I was afraid that it would get ruined outside, so much to my husband's annoyance, it is sitting in the kitchen. I'll have to find it a permanent home somewhere in the house, but for now, K is loving her kitchen climbing fort! 

I recently came across a site that lists books by reading level.
I put in the titles of K's favorite 2 books & this is what it came up with:

Marvin K Mooney Will You Please Go Now! reading level 1.1 - meaning grade one, first month.  I have been estimating that K is at about a grade one level, so I was pretty pleased with that.

Next, I tried her other favorite - Duck in a Truck -  reading level...............get this!  Grade 2.5 - that's the 5th month of grade 2!

Have I said before that this little girl amazes me?

Here is the site if you would like to see how your little one is doing  but remember, make it fun, no testing right?..............or at least be sneaky about it :)

AR Book Finder

 

Did You Miss Me? :)

Our family has been away for a few days on an exciting adventure! Here is a sneak peak of a couple of the more interesting moments of our adventure - I'll give a few more details & pictures in a later post

This pic is pretty fuzzy, but we did see a black bear on our trip.

Yes, the river we were traveling on is totally blocked by this log jam!

Stay tuned for more!

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New Forum

This just a quick note to let you know that there is a new forum called Unlimited Potential. It is for parents of children who are interested in using a neurodevelopmental approach as well as other alternative rherapies to helping their children achieve their full potential.

Here is the link:

http://community.babycenter.com/groups/a6729133/unlimited_potential