I know, I know!! I haven't posted in FOREVER! But I have a new educational FAVORITE!!! It's a way to help kids learn multiplication tables and it works! My son with VCFS has a hard time assimilating large amounts of information. When he finished 3rd grade he had only *passed off* through the 7s on his multiplcation facts and all of those were shakey. Within just a couple weeks on this program, he was solid on 2-7! He had surgery and we have lapsed in our efforts, but he WANTS to play this program! So I am recommending it to all of you!

TIMEZ ATTACK!!! It can be found on www.bigbrainz.com. You have the option of downloading free or paying versions. We have been using the free one and love it. I am seriously thinking of buying a more involved version. Please-- use it! Love it! :0)

So, it hasn't been 6 months....

But it has been 4 months. Having Kael has shown me one thing... motherhood is my only life for the next 20 years. No more ideations of writing a book or showering daily or peeing alone. Kael has been diagnosed with silent aspiration. Milk was going into his longs as he ate. Some times it would make him cough, etc - most times not. I was breastfeeding. I have been pumping and thickening the milk. I hate pumping. Ipumped for over 7 months with Drew (he had a cleft lip and palate). I started loosing my milk. I am already loosing my milk. kael is almost 4 months old. When am I supposed to pump? He seems to do better with breastmilk than formula, so I continue.

On a related note, I want to put in a plug for Simply Thick. If you are thickening breastmilk, this is your #1 choice. Some times one product is better than another. Simply Thick is far superior to ant thing else we have tried.

On a less related note, chiropractors for colic = "miracle cure". I would say it is at least worth a consult for any baby with colic.

So, this blog has become less the optimal tool for helping moms of special needs kids and more the rantings and musings of a tired, crazy mom with ,ore special needs experience than she would like! Thank you, anyone who is still reading!

She's alive!

So, I had my baby September 13th! It was SUCH a relief. As I am sure anyone who checks this blog has realized, I have been absent for 6 months! This was a strange and, toward the end, very difficult pregnancy! I was measuring 4-6 weeks ahead the last 3 months, making my measurement 44 weeks when I was actually almost 38 weeks. I was glad to deliver when I did. Kael is 2 weeks old now. And he is SO much fun! I won't lie, it is totally hard taking care of a newborn, a 2 yo, a preschooler (almost 5 yo) and a 2nd grader!

Delivering this kiddo has thrown me into a whirlwind of renewal! I am renewing my committment to loosing weight and getting healthy (I am at greater risk of Type 2 Diabetes after this pregnancy.... long story). And, I am renewing my committment to this blog! So, I hope this isn't the last post for another 6 months... But I feel like I really should be doing more with it again. Thanks for everyone who supports this blog and any mom with 2E kids!

How do I cope with a special needs child?!

I decided to post something I wrote to a mom on a Cleft Lip and Palate forum. She was struggling with how she was going to deal with surgeries and how to deal with the cleft emotionally. I was amazed at what I wrote. Sometimes, my answers are very contrived- often a repeat of what I have said before. This was the 4th or 5th post about people being rude, etc and the moms worrying and crying and being sad about the birth defect. I was ready to give my pat answer and then this just kind of developed as I was writing. I think it can be applied to any defect, disorder, syndrome or challenge you face with your exceptional kids!

I don't know exactly what to tell you either! I cried like a maniac for 3 hours straight after we found out around 22 weeks. Then, I was done. He had other defect, so there were ultrasounds and echo cardiograms to go to and amniocentesis to be done, appointments to make. I looked online at kids with clefts and I was really happy how their repairs came out for the most part. I was really encouraged.

After he was born, I was just elated! We had 5 days in NICUs and the children's hospital and then we were home. I loved it! I loved having him. I really never felt sad about it for years after that! He just seemed to fit into our new little family. Everything seemed to work.

I cried again last summer when we found out he has chromosome 22q11.2 deletion, later diagnosed with VCFS as the syndrome associated to the deletion. Again, just fear and sadness at not knowing exactly how this will play out and how it will impact him negatively. Not long after, he was diagnosed with a platelet dysfunction and Von Willebrand's Disease. So, from now on, he has to have DDAVP and a platelet transfusion before every surgery. Yikes! We have at least 3 more to go, if not more!

At first, I felt sad about all the new diagnoses. But now everything fits, everything is explained and there are talented professionals "assigned" to each diagnosis! I honestly don't know what I am going to do with myself when there isn't speech therapy, occupational therapy, appointments, surgeries and complications to take care of! I am back to feeling like he fits and this is our life. There are still days that it stinks! Days my heart hurts as I watch my SEVEN year old struggle to open the front doors to the school. But, there are days I am happy. Days when he says a sentence that I understand without even having to think about it. Days where his teacher tells me all the kids in class couldn't wait for him to get back to school after surgery. Days where some boy we don't even know stops to make sure my son gets through those big heavy doors at school. And we have SO many more of those than the bad days!!!It is a highly personal journey that we all have to take. You will find a place where this fits for you and you are finally comfortable in it! Hang in there!

Am I INSANE?!

Surgery is over and done with! Hurray! Everything seems to have gone as planned. Now we are playing the game of not wanting to get back to real life! It is hard when your 6 year old spends 3 weeks eating ice cream when ever he wants and watching TV all day! The switch back to reality has been hard for Drew!

A few days after Drew's surgery I made time to run out and pick up ... a home pregnancy test. Yup... That's right. Fourth times a charm, right? I am hoping everything goes well with this pregnancy and we have a perfectly normal child. I guess one can always hope! I won't even say.. heck, I won't even THINK what medical maladies our current kids don't have. The last time I did that, I got a baby with that problem! ("Oh, I'm not worried" I said, "Our current kids already have about everything! Well, they don't have GI problems... Maybe this one will have GI problems." ha ha, snicker snicker- baby with SERIOUS colic and reflux!)

So that is the news and the boys are fighting as I type! Time to get off the computer!

SuperMoms ALWAYS rule!

Today I finally got up the nerve to call the plastic surgeon's nurse. She is almost always more on the ball than me, so I usually don't call to bug her. It ahd been almost 2 weeks since I talked to her last and all she was waiting on was the official letter from the hematologist so that we could schedule surgery. Low and behold, I called and she had the letter! Amazing.... I got to something before she did! She had to check into what all he needed before surgery and call me back. She called about an hour ago.
Drew is scheduled for bone graft surgery and palatal fisure repair in January 22, 2007.
Hey, I just realized something! He had his soft palate surgery January 22, 2002! CRAZY! Anyway... I am just glad it is all worked out! That is a big wieght off my shoulders and we can start preparing again to get it out of the way. He will have to miss more school than I would have liked, but all in all I think it will work out just fine. It seems we have been led so far and everything has worked out for the best. It is just nice to finally be here.... AGAIN! Now, I just have to get in touch with the dentist (he and the orthodontist decided SIX of Drew's bottom teeth needed to be removed) to coordinate surgery times with them and the hematology departmetn to set up the palatlet transfusion the night before the surgery. Hmmm. I guess it never really ends anyway!

Can You Kill a SuperMom?

I think my nemesis, Crazy Medical Surprise Man, is sure trying! The latest installment in the saga that is my life is as follows.

Drew not only has VWD, but a platelet dysfunction. It is a mild one, thankfully! It only causes him problems because he has to have major surgery. However, the correction for it may kill me! Drew has to have a platelet TRANSFUSION ( yes, that is a type of blood transfusion) before every surgery! There was some good news, the medication for correcting his VWD IS EFFECTIVE for Drew! Yea! So, he will receive that before surgery too.

Drew's orthodontic expander fell out and we had to drive an hour both ways for them to tell us that they have to make a new one and he definitely has to have one put back in because with his plastic surgeon we are probably looking at January or February as the earliest opening in the surgery schedule. He can't go 2 or 3 months without an expander. So we will have to go back to the orthodontist on Nov. 26th, which is the very first available appointment they had. What a joke! They started this whole bone graft thing in June 2006! And now it looks like it will actually happen in January 2008. Does that seem wrong to anyone else?

Oh, and just in case that wasn't bad enough, they are pulling 6 of Drew's bottom teeth when he has the bone graft to optimize what little space he does have for his adult teeth to grow into. Poor, poor child. At least he only has the option to "eat" liquid for 2 months after the surgery.

I feel like I have a big chunk of Cryptonite tied around my neck. I am pushing and fighting and struggling for every little millimeter of success I get these days. It just doesn't seem right.

Von Willebrandes Disease- The Disease That Isn't a Disease!

I looks like Drew has Von Willebrande's Disease. Funny... it's not really a disease. It's more just a condition, a way of being. So, where do we go from here? We have another appointment with the hematologist on Monday. We are doing a drug trial. The drug is called DDAVP. It corrects the problem in a lot of people with Von Wille's. We have to draw blood, give the DDVAP and then draw the blood again to see if it improves his condition. If it is effective, we can use it before surgery to prevent bleeding problems. I am hoping we walk away from the hematologist on Monday with some answers. I just want to get the go ahead for surgery! We really need to get this done! At least now we have had the chance to investigate Drew's tendancy toward bleeding and hopefully fix it for this and future surgeries! I will be adding some links to info. on Von Willebrande's Disease to my long list of helpful links for those of you who want to know more!

Perfect for Families with Crazy Schedules

Try out this program, I think you'll love it!
http://www.cozi.com/
It is a family calendaring program. I just tried it and I think I am REALLY going to love it!

Prioritizing Emotions

Evan, my Aspie was so excited because I got some Signing Time videos for the boys and they came in the mail today. He immediately grabbed the ABC's volume and ran to watch it. The TV upstairs is in a bedroom that we use as a den. Right outside the door are... (TRUMPET FANFARE) the stairs. I HATE THIS! It has been a constant worry that the kids or myself will fall down the stairs sleep walking (yeah, my kids have night terrors) or rough housing, not paying attention, etc. Today was the day. Evan was running in and out of that room watching the video and then finding me to show me the sign he just learned. My 18 month old, Robby, had terrible timing and was between the door and the stairs as Evan ran out. Nothing but the grace of God saved Robby from being seriously hurt. He stopped himself on the third stair down and has no severe injuries. He cried for a little while, then he was fine.

Here's my issue. Just as I was running to save Robby (I heard them vocalize as they ran into each other and assumed the worst, so I ran out to save Robby from falling down the stairs), Evan came joyously bounding out to show me another sign. I didn't raise my voice. I just said, "Evan, Robby is hurt. You knocked him down the stairs." Evan replied, "This is how you make a 'Z' mom!" He was jumping and so excited. Recently, Evan has made real strides in noticing when he has hurt someone and saying, "I'm sorry." But today, no matter what I said, and even after I raised my voice so he could hear me over his jubilant, repetitive talking, he seemed like he just couldn't make feeling sorry a priority over his excitement. And I could tell he was really thinking about it! Even after a lot of progress in one area, he can't regulate his emotions and "prioritize" which emotion is more important at that time. I would say he has now "learned" what social cues tell you that you have hurt someone. I would say that he has "learned" that the appropriate response is, "I'm sorry." He has even gotten really good at jazzing that part up! Today, it just wouldn't come. He was far too excited about the new videos. How do you teach someone to prioritize what they feel? It seems so internal, so instinctual. Of course, I never thought he'd make a friend on his own or learn to recognize when he hurt someone, and he has done those things. It is just a struggle I hadn't thought about...