So far behind...

I feel like my blog has been severely neglected. I have SO many pictures that I haven't put on here, dating all the way back to last summer. I would like to say that I am going to be really good and get all caught up, but realistically that's not going to happen : )

Hunter had his 7th birthday on March 10th. I can NOT believe that my baby boy is 7, I mean seriously where does the time go???? I will have t o do a post all of his own very soon!!! Today was the first soccer game of the season and kicks off a VERY busy couple of months for us. This year Hunter's baseball and soccer overlap a lot, Mondays he has Boy Scouts, Wednesday he has baseball practice, Thursdays he has soccer practice and a baseball game, and Saturdays he has both soccer and baseball games. I'm tired just thinking about it all. We will also be heading in for an orthodontic consult in a little over a week, I don't think my bank account is at all ready for this, but the kid has two teeth that are coming in behind the rest because there is no room, so we'll do what we got to do!

Ella is doing great as well. We have made some changes around here lately.....I have pulled her out of private therapies until school gets out. We were both exhausted and her behavior was not so great which in turn made my patiences not existent. I really debated it, but I think this is what we need right now. She of course still gets therapy at school so I'm really not too worried about it. Ella will be starting soccer soon, she will be playing on a league for children with disabilities. I'm really looking forward to it, it will be on Wednesdays for 1 hour for 6 weeks. Her eyes seem to be doing really good. She still has some "residual crossing" when her glasses are off, although that seems to be less and less as time goes by, and we go back to the eye doctor in May to officially see how the surgery went and if her prescription changed. Currently her glasses are broken, she sent them down the slide at a friends house yesterday and one of the nose pads fell off. I of course can't get them fixed until Monday. I'm thinking summer might be rough on the glasses. I'm thinking about getting a spare pair after her appt in May but DANG they are expensive!!

Well, that's if for now.....I hope to be better about blogging : ) I will leave you with some pictures from Ella's swim party at school last week.....her teacher is so awesome and brave!!!

What I go through....

....in an attempt to get a half way decent picture of my children!

me: "Ella look at me."

"no, not at bubba, at me."

"okay, now OPEN your eyes."

**sigh** "forget it, do whatever you want."

Hunter: "FUNNY FACE!!!"

Well, Happy World Down Syndrome Day anyhow : ) Hunter asked to wear his Buddy Walk shirt "the one with Ella's face on it," to school today after hearing me tell Chris on Sunday that it would be Ds day tomorrow. I asked him if he was sure he wanted to wear that one, he could always just wear the one that says Buddy Walk. (He is very against anything that may be girly or that he could possibly get made fun of in, and I thought perhaps wearing a picture of a girl on your shirt could lead to that.) Hunter says "well all of my friends think that my sister is really cute," I said okay...but if anyone asks you why you are wearing it you can tell them that it's World Down Syndrome Day and that your sister has Down syndrome. He says "Uh, yeah. They all know that already." Oh...didn't realize it was a topic of conversation amongst 1st graders : ) I sure love my boy!!!

Today I am grateful for that little extra something in my life!!!

Quick update

Just a quick post to let everyone know that Ella's surgery on her eyes this morning went well. We are home and she is resting and I am holding her arms down. She got to one of her eyes earlier and it made blood poor out of her eye, it was gross and scary looking. Ella is a bit aggitated, tried to get up and walk and kept falling. I don't know if that is from her eye's being blurry/and or double vision as they said could happen for the first week to two weeks or from left over anesthisia. Either way she looks pitiful. But as is her style she is a brave, strong girl!

Also, I posted this on Facebook but have to share, yesterday I was trying to prepare Ella for the surgery and said to her "Ella we have to go see the doctor very early tomorrow morning," to which Ella replies "aww dammit." My thoughts exactly. Gotta love it!

Happy happy happy birthday to my Hunter. You are the most amazing son a mom could ever wish for!!

An injury, a scare, school and surgery...

We have been pretty busy around here! Two and a half weeks ago Ella hurt her foot. Hunter set up his own little obstacle course in the living room and of course Ella couldn't resist doing what big brother does. Hunter was running and jumping over their little chair/couches, so Ella would run up to it, stop, and then try to kind of leap over it. They've done it a million times. So Ella leaps over and falls onto her left foot and starts bawling. (Let me quickly remind you that this child has the highest pain tolerance....so high that it is down right scary.) I figure she most have rolled her ankle a bit. Well, four hours later she is still saying it hurts and when I try to have her stand up she crumples to the ground crying and screaming. So, hubby comes home from work to stay with the boy and off Ella and I go to the ER.

The doctor that we see at the ER tries to convince me that Ella is faking her injury, because it is not swollen or bruised and when she is sitting it doesn't seem like she is in any pain at all. Despite my attempts to explain Ella's freaky pain tolerance issues and informing her that if Ella was fine her little room would be destroyed and Ella would be roaming the halls, the doctor still felt like everything was fine. I convinced them to at least do an X-ray. The doctor asks Ella where it hurts and she points to her big toe, so an X-ray is performed on the top of Ella's foot. Not her ankle, just the top of her foot, because that is where my 4 year old pointed. OK. So that came back fine and the doctor says to me "don't worry, parent's bring their kids into the ER all the time because they won't do stuff for them at home." As if Ella would play a game for 4 hours, a game mind you that has no reward. Fine. We go home. The next day Ella does not walk AT ALL. She literally crawls around the house the entire day. The day after that Ella crawls around until about 6pm then takes a few steps, limping and saying owie. Then on Thursday she is walking pretty well, with a noticeable limp, but walking, (Thursday ended up being a snow day so she didn't go to school.)

The following Tuesday I go to pick Ella up from school and the teachers informed me that Ella had been limping and tripping and falling all day. I went back and talked to the PT and she and I both felt that Ella's foot should be checked out again. Her foot was a little puffy. So Wednesday I take Ella into her pediatricians office. They order STAT X-rays of her tib/fib, ankle and foot. Five hours later the doctor calls me. She asks me how Ella's foot is and I tell her she is still limping and tripping. She says that the X-rays all look good but she consulted with some of the other pediatricians in the practice and they all think that Ella should go have some blood work done. Um, what? She says to rule stuff out. I say Cancer? She says "yes, Leukemia." Insert nausea and sobbing. Then she says "can you get her to the lab like now?" I get Ella to the lab rather quickly and look at the script the doctor sent over and it says STAT STAT STAT on it, which just added to my anxiety. We left the lab at 3:30 and I just knew that we wouldn't hear anything back that night, and therefore knew that I would not be sleeping at all. Surprise surprise the phone rings at 6:30, it's the doctor's office. I'm thinking this canNOT be good. The nurse says that 2 of Ella's tests came back and her numbers could not be more NORMAL!!! I cannot tell you how fabulous that felt. Phew. We still didn't know what was going on with her foot but I didn't really care because she didn't have cancer!! We decide to try wrapping Ella's ankle for a while and see if that helps, and it does, so Ella's PT called downtown and looks like we are getting more orthodics next week so that we avoid another injury.

Last Thursday was our big meeting with the school to discuss Ella's placement for next year. The school had told me that Ella could not stay in preschool next year, that because she would be 5 before Sept 1st (her b-day is Aug 30th) she would not be able to go back into her integrated preschool program and would instead have to move on to Kindergarten. Well, that is most definitely not what I wanted for Ella. I have so many reasons why I wanted her to stay in preschool, but to me it was just so logical that a child her size, with her birthday, and with her delays that she should not move on to Kindergarten. Anyhow, so we've been gearing up for this big battle with the school district and it was the day of the big meeting and again I was so nervous. We get to the meeting and there are 12 people there, 8 from the school, Chris my mom and I and Ella's private speech therapist. About two minutes in they inform me that they got special authorization from the state to keep Ella in the integrated preschool next year. SO RELIEVED!!! Phew! She will need to change teachers because they think she needs some change (she's been in the same class for 2 years) and I think I'm okay with that. I absolutely LOVE her teachers and paraeducator that she has now, they really push her but also love her, but I guess I see their point and I am okay with change (sort of.)

Now we move onto surgery. We are scheduled to check in for eye surgery this Thursday, March 10th, at 7am. She is having both of her eyes operated on to correct her crossing. I am nervous of course but know that she really needs it because her eyes are bad!

Speaking of March 10th, my baby boy turns 7 that day. I cannot believe my little guy will be 7, just does not seem possible. We had his birthday party this past Saturday at the bowling ally, he had 15 kids and his Mimi and Nana there, he sure had a great time!!! I have tons of pics from that that I will post later!!! For now I will just leave you with these from right before the party!

Poor squinty light sensitive kids : )

Princess Cowgirl Pirate

This is my favorite look, the singing princess cowgirl pirate!


Ella is really into dressing up these days......well undressing and then adding only what she likes : ) Her imagination is really fun to watch. The other day she was pretending that her sweatshirt was her baby. Never mind the kid has like 15 baby dolls. But her sweatshirt was naughty and went to timeout for spitting, had a fever, was hungry, and took a nap. It was quite funny watching her listen to the sweatshirts heart and feed it. Crazy kid. Hunter was sick last weekend with a fever so several times a day Ella comes to check our fevers, tells us to cry and then gives us a shot. Such a good little doctor!

Drinking "hot chocolate." I am so very happy to be done with putting a patch on her eye. As you can see her glasses did NOT work with the patch and I really think the poor girl could not see during patch time. But no more patch means that we are heading to surgery on March 10th (Hunter's birthday.) She will have one of the muscles behind both eyes tightened. I was trying to listen to the doctor explain the surgery and a little girl I know was being a complete terror, like running around with the remote that changes the eye chart on the monitor and clicking away, so I didn't get much info just signed all the consents. The doctor did say at one point "we do not take the eye out of the socket." I just stopped chasing Ella and laughed and said "we'll that's good." She said you would be surprised what some people asked. Anyhow I know that in the world of surgeries this isn't a huge deal but it's my babies eyes. You know the things you use to see out of...... The doctor also said that Ella's prescription will probably improve after surgery but that she will still need glasses and probably always will because of her astigmatism. Bummer. Ella does great with her glasses, she really does, but they still drive me crazy. They are always dirty and I feel like I am constantly telling her to be careful so that she doesn't break them. She has fallen several times this week alone and jammed her glasses into her face, or knocked them off to the side of her face. She is sporting a bit of a shiner from falling last night, her glasses went off to the side and one of the nose pieces dug into the outer corner of her eye. But like with everything else Ella just accepts it for what it is and carries on being Ella.

Ella has been telling us about 4-5 times a day that she has to go potty and then goes pee in the potty. She has been poop trained for over a year and a half. So while this is really great, I would much rather do it this way when it is her idea, I have my concerns. For example, for as long as I can remember I have put her on the toilet before her bath and she will pee, but as soon as she gets in the water she pees again. So, can she not get it all out at once? Does she just pee a little all day long? If that is the case than it will be really hard to train. I think she is going to be the kind of kid that has accidents for a long time. So then do you keep her in pullups forever, or some sort of training pants? I, of course, do not want her teased for peeing her pants.


In other news I finally got Hunter to get a haircut. FINALLY. He was in one of his "I want my hair to be long," phases. He finally told me that he was growing it out in anticipation of crazy hair day at school because he wanted a long mohawk. So I told him we could get a spiky haircut and if and when there is a crazy hair day we can paint his hair blue.

I would like to know where my little boy went. He looks so much older to me now that I can see his face again. Hunter will be turning 7 soon and I am quite depressed about it. I wish I could freeze my kids right where they are (okay, Ella really needs to learn how to behave and then I will freeze her.)

Win an IPad!!!

Grab This!

I've been reading the blog Enjoy the Journey for a long time. I love looking at the pictures and reading the stories of beautiful Bree and her sweet sisters! This family is now in the process of adopting Kareen, an orphan in Eastern Europe who has Down syndrome. Please help them bring her home!!! From their blog.......


iPad Giveaway for KAREEN!



Kareen is a 4 year old little girl with Down syndrome who was given up at birth and has lived in an orphanage in Eastern Europe ever since. In her country a child with special needs is only held in an orphanage until the age of 4 or 5 and is then transferred to an institution where conditions are bleak and offer little hope for living a fulfilling life. Kareen's story has touched our family, and we are committed to bring her home. The cost of international adoption is very high, and we could use your help!Donate now through Saturday, February 5th, when one lucky person will receive a Brand New 16GB Wi-Fi iPad
For every $10 donated, you will be entered into a drawing for the iPad (i.e. $50 equals 5 entries). Also, if after donating, you advertise this giveaway on your blog or facebook, you will get an additional entry. Simply leave me a comment with your name and the link to your post.
Ways to Donate:


•Go to www.kareensjourneyhome.blogspot.com and click the “Chip in “ button
•Bring a check or cash by our home. You may email me at keciajcox@msn.com for our address.
•Tax deductible donation (must leave me a comment with your name and donation amount to be entered into the giveaway, since this site is kept confidential) http://reecesrainbow.org/sponsorcox
Every dollar helps, and brings us closer to having our little angel home safe.
Thanks for your Support!!!

- Kris & Kecia Cox

Follow their journey here...

Eye's and more....

EYES
We went to the eye doctor, AGAIN, on Jan 4th. Well, Ella's eyes are crossing even worse, the left one slightly worse than the right. So it looks like surgery is in our immediate future. For the whole month of December Ella had some tearing issue going on with here eyes. She started off with just clear tears coming out of her right eye for about two weeks then had the nastiest greenist gunk coming out of both eyes. So we got on antibiotics because she had a sinus infection. As soon as the antibiotics were done the clear tears picked back up. The eye doctor said that she wanted to try some steroid drops in Ella's eyes and see if that helps the tearing before she does the surgery for crossing because obviously if she needs her tear ducts opened up she could do them at the same time. In the mean time she said we could give patching a try, so we are to patch her right eye for 2 hours everyday. Yeah, this isn't easy. It's easy in the fact that she will leave it on fine, but she cries when I say it's time to put it on, she runs into things while it is on and just seems sad and then cries again when it's time to take it off. Her glasses do not fit over the stupid patch so I'm sure she really can't see with the dumb thing on. What I have noticed since patching is that now her right eye crosses worse than her left......so does that mean the left is getting better or the right is getting worse??? I don't know. So back we go on Feb 1st to figure it all out. Hunter on the other hand is all done patching, it worked and we are done! Hooray!

SCHOOL

Kindergarten transition meetings are coming up soon. I have been stressing myself out about all of this. Ella will turn 5 on August 30th and because she turns 5 before the cutoff date of August 31st she is not allowed to return to her preschool class. She is currently integrated with an ECAEP class (kind of like Headstart, federally funded) and her class consists of 14 "typical" kids and 4 kids with varying needs. Apparently Ella has to follow ECAEP rules as far as age goes, even though we do not qualify for the ECAEP program. So because of 1 day, 4 hours if you want to be specific, Ella is being pushed on to Kindergarten. I have several concerns about Ella moving on to Kindergarten, that I won't specifically get into, including her safety, her size, and her maturity. I will say that had Hunter's birthday been on August 30th I would not have sent him to Kindergarten, and he has no special needs. So the school district wants to send my child, who is the size of a 2 year old, who has the language of a 2 year old (she was just re-evaled), isn't potty trained, and oh yeah has Down syndrome on to Kindergarten. I don't know, I just don't feel good about it at all. I see how much Ella has changed, how much better she is doing, from last years preschool to this year and think that one more year in pre-k and she would really be so much more ready for Kindergarten. So, I have been exploring my options and went and talked to the owner of the Montessori preschool that Hunter attended when he was 4 and they are willing to take Ella. I am going to go ahead and send her 3 mornings a week during the summer, which I think will be really good for her. I love that school! I really don't want to pay for school next school year, and am still going to try to fight for Ella to remain where she is, but it is definitely an option. It's all just exhausting and stressing me out. My opinion seems so logical to me BUT apparently not to the school district. We'll see where this goes.

FUN

Ella has been invited to a playdate with one of her classmates (typical classmates : ) so we will be going to her friends house on Sunday to play. I am SOOOO excited, oh yeah and Ella is too!

On MLK Day we went bowling with Hurricane Riley and his family! I was a little worried about how much time we would spend chasing Ella and Riley down the lane and about how many little fingers and toes would be crushed by bowling balls but the kids did fantastic!!!!! All 4 kids, the big boys, and the two littles had a blast! Ella would push the ball and stand waiting to see what happened, if she would only know over one she would put her hand to her forehead and say "aww man," but if she hit more she would throw her arms up and celebrate. Riley was hysterical, he celebrated no matter what jumping up and down all the way back. A fun time was had by all!!!!

"Hooray!" notice there is only one pin left up!

This is the giant smile that we saw every single time!

Crazy buddies!

I realize this is a crappy quality photo but I love it anyway : )

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