Monday, September 21, 2009

Saturday, September 5, 2009

Not finished yet

I am not done yet, but I have to quit for now. The game is about to start soon, so I have to relieve Myles from kid duty.....except for one or two who want to watch with him. More soon, I hope! Please comment to let me know someone actually reads this stuff! I love reading your comments! :)

Jacob plays with girl toys!!!

Ha! He mostly plays with the Wii and train tracks, actually, but those aren't as fun to post about! Check out the fun that he and Jayla can have together....





That is an Ariel wig from Build-A-Bear and a mermaid shell-shaped purse! And he doesn't let me get a "normal" picture of him just smiling? I don't get him sometimes, but he always keeps me laughing!

Kids' workshops

I think this one was at Home Depot. They do one a month and Lowe's does two a month, so check them out. They are free and the kids gain a little knowledge and confidence and get to keep what they make!

Everything seems easier when you stick your tongue out! Jayla only needed minimal help (some of the screws were tight and a couple of the pieces were confusing).


He was more interested in the cookies and punch. I pretty much did the whole thing for Jacob, but he didn't mind as long as he was free to go get more refreshments!


Jonathan did his completely on his own! He is getting very good at reading and following instructions!



I was actually impressed with the quality of these message boards. The kids love having their own board to write on. This was our first time for going to Home Depot, but we have been to Lowe's a few times. They will let younger children do them as well, so if you have little ones, go ahead and sign them up! Myles stayed home with Jack this particular day, but Jack has participated before. Oh, and get there a few minutes early just in case they run out (yes, even if you register), but usually it's not a problem.

More zoo fun!

The rest of us had to get in on the water fun too, but we mostly stuck to the misters. The kids loved how it made everyone look like we had grey hair.




Jack at the zoo

We had not been to the zoo in a while (this was in June), so Jack likely did not remember going to see these animals last time. He had a great time looking at them and talking to them, but I think his favorite thing there was the sprinklers! They were spraying pretty hard too, but he loved it! We just could NOT pull him away, so he went home soaked to the bone. :) I am uploading a video of it right now. I will post it soon....I don't feel like waiting for it to upload!




Growing up!

Jonathan finally lost that 2nd front tooth. My kids have all been late teethers (Jonathan and Jack were 17 and 15 months when their first tooth appeared), and now, apparently, late teeth-losers too! And it looks like they will have to have some baby teeth pulled soon (Jonathan and Jayla) because all 4 of them have crowded teeth and will likely need braces. They get that from their daddy!!! ;)
And here he is, also working on that walking stick. Man, he's growing up way too fast! I can't believe my kids use such sharp objects like a saw and knives (mostly just Jonathan still) and have even mowed a little!

Boy fairies?


Oh, how I miss all that hair!!! :'(

We were attempting to make a walking stick for Daddy for when he and Jonathan go camping. This was going to be a Father's Day gift from the kids. I still want us to make one for him, but this one was in a bad place and got crushed by a vehicle. (SIGH) Jacob was quite the little helper though, pulling off all the twigs!

He is completely, totally all boy, but he also loves to play with Jayla (and she sure doesn't mind!), so he often puts these fairy/butterfly wings on or plays Barbies with her. It's so cute.

Catching up on pictures

I have gotten so far behind on blogging it's just not even funny anymore. So I am going to attempt to catch up on pictures while I have a little time to myself at Panera Bread (YUM!), mostly for my own record keeping, but I hope you enjoy them as well!

Wednesday, September 2, 2009

Update on Jack!

Nothing diagnosed yet, but we are getting closer to a diagnosis for whatever this syndrome is that he has!

He had an appointment with the geneticist today. This was a new (to the clinic) doctor, so we had a new set of eyes to get a fresh look at him, while he still had all the previous information on him in his folder. I liked the other doctor just fine, but this guy does seem to be more aggressive in wanting to nail down a diagnosis. He did tell me at least twice that he agrees with me that there is "definitely something there" that is abnormal, different from my other kids. He looked over every inch of Jack and even pointed out some things I didn't know, such as a slight incurving of his forearms, a slightly webbed neck, smallish chest with wide-apart and flat nipples, broad and flat nasal bridge and maybe one or two other things I am forgetting. Here are the other things we have gathered over the last year and a half. Some of these may be insignificant or family traits, so that is why it can be so difficult to diagnose something like this if blood tests are not 100% accurate.

  • wide-set eyes
  • little "flap" of skin in corner of eyes over tear ducts
  • small-ish jaw
  • large fontanel (finally just closed!)
  • very poor balance
  • possibly poor muscle tone/weakness
  • seizures (first two with fever, 3rd he stopped breathing then had fever next day)
  • speech difficulties (only says maybe half a dozen words, but he will TRY to repeat just about anything.....could be caused by a hearing problem, which will be tested for soon)
  • doesn't seem to be scared of anything or anyone
  • seems slow to catch on to things and is developmentally delayed
  • a few ear infections (the most my other kids have had in their whole lifetime is two, I think!)
  • very laidback personality
  • does not scare easily (or at all!)
  • seems to have a decreased sensitivity to pain or touch
  • is not as attached as my other children were at this age
  • is very sweet and loving but does not really hug or kiss anyone (just started some)
  • flat helix (outer rim of ears)
  • my pregnancy with him was horrible.....I was much more sick than than the others, then I developed the HELLP syndrome and he was born c-section 6 weeks early.
  • He was failure to thrive at 8 months
  • short stature (he is about 5% on height and 50% on weight)
  • those "coffee and milk" birth marks, a.k.a. Angel kiss on forehead and stork bite on back of neck
  • nearsightedness (or will be as his vision develops more)
  • possible heart murmur
  • inturned pinky fingers (Jonathan and my mom also have this)
  • (added 1/10) may not have any sweat glands, or they could be too small (we have not noticed any sweating since this last appointment in September.....if this is the case, it could be the cause of his fevers rising quickly and causing seizures!)
So the doctor's best educated guess for today (not a diagnosis yet) is the Noonan syndrome! Jack does seem to have a lot of these characteristics, so we will find out soon! They took some blood today and will look at his DNA as well as another thing or two (can't remember). He will also go back in soon for an echocardiogram, plus he wants him to have his hearing tested as well as some speech therapy. If this is what Jack has, he should go on to live a mostly normal, healthy, happy life! Praise God!!!!! He should be able to marry and have children, though his children will have a 50% chance of having this as well. But that is okay! If they are as sweet as Jack is, I'll take them any day! :)

I am amazed at how God created such amazing creatures of all kinds, even in this sinful, fallen world where there are many imperfections. His creation is still miraculous and amazing, perfect or not! I am thankful that Jack seems to have a mild syndrome, whatever it is, but even if it were more serious, I thank God daily for giving him to us. He is such a joy.....such a huge blessing to our family. :)


(added 1/10) Jack does not seem to have Noonan after all. We are still waiting on the most recent test, but after 3 (I think) tests for Noonan so far, we have yet to get any positive results. It can be very frustrating! It's not that I want him to have this, but we know he has *something*, and we just want to have a name to put to it, plus it might help us better treat his condition, if able.


The echocardiogram came back normal, hearing test was normal (but they just did the screener test), and he is currently in speech therapy and really enjoys it! He is learning to say a few words, but as far as understanding him, I can't really tell much difference. We enjoy it though, and he is also learning some new signs he did not know before (American Sign Language).

Tuesday, September 1, 2009

So much on my mind, no time to blog!