Thursday, April 23, 2009

Tomorrows Friday, yeah

Jax slept until 4:00 this morning. Yeah. I still can't figure out what is hurting him. My mommy radar is going off. We've thought of his tooth, his tummy. But its been 4 days now, I don't remember tooth pain lasting that long. Tomorrow we go to the dentist to make sure its not infected. His teeth take so long to come in, that the risk of infection is higher. They also want me to do enema's for the tummy. That will last all of two days. I'm also wondering if he's getting worsening headaches from the SVC syndrome. And still no one wants to fix it. She also wants me to ((squeeze)) him all over to see if something hurts. He has more fragile bones because of his severe hypotonia and not weight bearing at all for his three years. She things he might even have a broken bone somewhere. Yikes, that would make me feel horrible.

I called Pingree, our autism school. And of course they are full for next year already but she's going to send me an application for next year to get him on the list to get pulled in if there's an opening. His resource teacher thinks he will be fine next year because she's requested a great teacher for him, which may be true, but I still think he needs a teaching envirnment that specializes in autism. Maybe we can get him caught up a little. He wants to go to. Last night he brought me his video from preschool there and wanted to watch it, he also wanted to know if Darcy would be his teacher again. I told him probably not but he might see her around. It makes me happy to see that he wants to go there.

Today we got to go to maturation with mondo (Raymond) my oldest. Yikes, I thought boys did 6th grade and he's only in fifth. He's 10!! Me and my hubby both went. But I missed most because Jax was so cranky I had to take him out. Man it makes me feel old to think my son is nearing puberty. Aaahh, run for the hills. He's my oldest, the one that looks like me, and he is super sensitive. He's the one that has been affected the most with whats happened to Jax. He tells me that when we die, he gets Jax. So sweet, but so sad that a child realizes he will probably have to take care of a sibling. Its amazing how our other kids mature when you have a special needs child.


Stephanie said...

Wow, it's like deja vu. Your Raymond looks like my William. My oldest too, my sensitive one (who looks like me). Except my Will, is going on 16 in June. Man.. I'm old! Puberty's like a roller coaster for our sensitive young men, whew.. good luck. Just kidding, it's always an adventure, right?!
I hope Jax is feeling better soon, why doesn't anyone want to fix the problem with his SVC? I must have missed something.
Kiss him for me..

Junior said...

Awww, sure hope you can figure out what is bothering Jaxson.
Big hugs

Heather said...

Trust your mommy radar.At the very least,keep searching for clues and eliminate possibilities as you go.Jax is so sweet Lacey.As are your other boys.I was so glad to have met them all.The gifts they are receiving because of the blessing of Jax in their lives,is immeasurable.And I know you know that.Raymond is of course amazing ... look at his mom and dad.Hope you all rest well tonight.

Unknown said...

Your Raymond is a true reflection on you sweet Lacey! Sensitive, Full of love, Full of kindness and Full of Happiness!
Hope Jax feels better soon and that you get to the bottom of him not sleeping! Sending a big hello from a not so sunny South Africa! God bless, Megan and Keaton

Pam said...

Poor Jax!! I just feel so bad for him. Sending you lot's of ((HUGS))

Melissa said...

Poor Jaxson:( I feel so bad for him...but, as far as the teething...Dillon's Pedi & BT3 always says how mollars take FOREVER to cut even weeks sometimes. Would you want to try to give him something next time to see if that helps??

Hugs to you all...Hope that you have a great day & better sleep tonight...REMEMBER MOMMY KNOWS BEST!

The VW's said...

Glad to hear Jax slept a little better, hope you did too! Hopefully this continues for you!

I wish that your little guy wasn't in pain though! How heartbreaking and frustruating! Hopefully it's just his teeth! Gavin takes FOREVER getting his teeth in too and they always look so painful! It's so hard because they can't tell us anything! Gavin always gets really fussy when he has gas or tummy issues too, but thankfully he is able to pass the gas and then it gets better. Poor Jax!

What are you going to do if no one around you will fix his SVC? Are there options outside of your area? Again, HOW FRUSTRUATING! I pray that all of this will clear up for you soon!

Your Raymond sounds like our oldest, Jacob. He is most affected by Gavin and is very sensitive about him as well. He is always asking how Gavin is doing and you can tell that it bothers him if Gavin is sick or not feeling well. I hate that my other kids are affected by this, but I know that this is a wonderful life lesson for them as well. They will grow up being more compassionate and with great knowledge because of their special brothers!

Any ideas on how you will get your girl? I dream about this all of the time as well! I know that a girl is in my future! I just don't know how I will get her! I'm quite sure that my husband and I don't make girls for one! Having 4 boys kind of proves that! :) And, I'm really not up for being pregnant again anyway. But, adoption is so expensive! Let me know if you find an easy way! I would LOVE more children and especially a girl! My boys need some feminine training around here! All they talk about is boy stuff, and some days I'm tired of hearing about it all! :)

Hang in there! Hugs!

Kim Rees said...

Ahhh! Your post made me cry! Poor Jaxson! I don't know how you do it? I will definitely pray that God will show you and the doctors what is hurting Jax so that things can be taken care of. Your oldest is definitely a special little boy. It is soooo amazing how much they care and love their sibling. I know my 3 year old is sooo loving to our Liliana and I hope some day she would say something as sweet as your son did. God Bless You! Hang in there!

Hope for congenital diaphragmatic hernia said...

Hi Lacey and Jaxson! I thought I would stop by and do a catch up on how Jax was doing. I didn't realize you all went to Disney.

I know exactly what you mean about Mommy instincts popping out. Seems it never seems to give me rest. I guess that is why God gave us His best, huh?

Thinking and praying for you. Ava is doing well. She is running and singing to the Wiggles....imagine that??

Christine said...

Isn't it funny how siblings step up to the plate. My oldest(Andrew) told me not to worry that when I am gone he will take care of Jonathon. Makes you soo proud to be a mom. I sure hope Jax feels better soon.