Monday, February 16, 2009

We are coming home!!!!!

We are coming home tomorrow............ it was hoped for today, but we had a few snags getting the home health set up! (always the paperwork)

So we are going home on Tuesday. I am promising to run out of the NICU as soon as they sign all my papers and not trip!!!! Eric even took the day off and all the kids were excited cause they were home and could come (OK I am sure Lynn and Angie were excited to come too).... but they will go to school and I will send him to work to not jinx it!

But I will get a chance to say goodbye to our favorite nurses and secretary (they come in again on Tuesday) and hopefully hug a few more parents....... I have watched so many people leave ..... I know they are counting the days too. My hall mate has been here for 6 months~ You would have had to lock me up if we had been here that long! But he is going home tomorrow too!

Get ready for photo overload tomorrow!

Saturday, February 14, 2009

The Tater Tot and the Valentine

I had a horrible start to my Valentines Day this morning. I came to the hospital Friday night about 9:30 pm after a fun afternoon with the kids, Colin's valentine party and the ice cream to celebrate Melea's birthday and about two hours of six of us pigging out on all the Valentine's candy. So I was tired when I got here........

Emerson had a new nurse who fed him yesterday and he broke his streak of no heart rate drops!!!!! I was crying...... I had been so excited when they said he was going to get to go home after we waited four days with no drops...... well we had made almost 72 hours and I had started seeing the light at the end of the tunnel.

Well then he had two with me when we were breast feeding and another when he was sucking his finger. He can not a;ways process the sucking, breathing, eating and "farting" thing at one time. You have to watch him cause one of them needs to stop (ironically my son chooses to stop breathing and then drop his heart rate dangerously low and turn purple!)

So hear I sat in the parents lounge waiting for my breakfast to come up pouting and crying...... I was frustrated cause we weren't going home, I was frustrated cause we were going on seven weeks here, I was frustrated cause I just ordered the same breakfast I have eaten for the last 30+ days and I just wanted hash brown...... but they are only on the kids menu, no the parents.....

So I am just looking like an idiot, and up comes my tray...... I sign for it and still am teary eyed (Like I can make him quit having these drops or make them let me take him home.....and I have been considering stealing / kidnapping him when I come in so late at night and am just sitting here) well on my tray are tater tots! OK they are not hash browns, but they are closer than I have ever gotten.

It was a mistake, but it made me stop and realize that maybe I can't have everything the way I want it....... but at least I can get something..... and I smile a little. I then move my milk and under it is a valentine. My kids remembered and all made me things, but Eric has had no time to get me anything and we usually don't go out..... but I am wanting someone to tell me how special I am (not cause of my kids or the time I put in) but because they really like me! Well I get a sponge bob valentine from a little child named Dylan!

I have grown to love sponge bob over the last year and it is depicting my favorite episode...... where sponge bob and Patrick are playing in a box! They use their imagination and making believe and driving Squidward nuts!!!!! This just made me chuckle.... cause I love this episode and I know that their are some new episodes premiering on Monday and I actually am planning on watching them! (IRONIC ISN'T it!!!!!)

So this little mistake of the tater tots and piece of paper from a "Dylan" who was probably forced to write this in school made a very say and depressed lady realize that Monday may not be our dismissal day but Tuesday could be!

(Doctors said he is still going home and not to cry later...... it will just be when home health gets everything set up!!!!)

Friday, February 13, 2009

Valentines & Friendship Parties!

Well it has been party time at school lately! Melea & Adrian's were Thursday. I helped in the resource room and their party also on Thursday and Colin & Devon's were Friday.

Party days are always a depressing time for me. I wish I could go into them more upbeat, and excited but I always get to be smacked in the face that there is something different about my "chromosomally enhanced" children now when I attend their parties in their integrated rooms than I was we were in preschool or just go to their resource room celebrations.

It was one of the reasons I was so looking forward to Adrian going to school this year! It is nice that I can go and see her interacting and participating and not hiding under the table or trying to run away.

And valentines (oh our school calls them friendship parties) Day celebrations are even more difficult...... cause they have required the signing of valentines, and of course each class has a different rule so Melea and Adrian are just supposed to put their name on other stuff, but Adrian fights me because she wants to give specific people specific ones. Melea can't really write all her name in such a small space and it takes three nights to get all 22 of hers signed. Devon only needs four, but he just scribbles so Miss Lynn writes his name and lets him scribble all over them, same for Eliza and Miranda.

However this year Colin's teacher wants them to put the other children's name on them...... what a nightmare....time consuming thing. Thank heaven for Miss Lynn and her helping me cause with all the hospital visits I just didn't have time to give Colin the time he deserved to complete this task (It took 3+ hours to get 17 valentines written on) with their name and his and of course he had to stop and draw one of his famous pictures on each one!

So Valentines day requires a lot of work from mom (Gosh I love up and watch them eat candy!) a head of time. Dad did try.... but he just doesn't get it, so thank heave for Miss Lynn!

Well I managed to make it to Adrian's party on time (I was waiting for a consult with the doctor) and it was fun, but I had to run back and forth between the preschool room and hers (thank heavens they are next to each other).....

Afterwards I take Adrian out to lunch for our special date. She loves Mexican and so off we went to our favorite Mexican place. She was so excited to go there and to eat lunch! I just love watching her enthusiasm! She is just so happy and excited and usually fun to spend time with!

We run back to school, I pump in the parking lot...making two bottles for Emerson. Adrian and I listen to the Wiggles while waiting! Then I go to our next party. In the resource room for Colin and Melea. I bring the crafts and the candy and the food. The kids were wonderful! All four of the little ones in the room (ironically two of them ARE NOT mine), we made candy necklaces, made a photo collage for our parents, while working on scissor skills and other fine motor craft skills and then the funnest activity was making the "Fruit and cheese kabob's" and eating them!

I think they all enjoyed this activity and we didn't leave them on a sugar high for their afternoon classes.

Melea's party was in the late afternoon and for a change..... she was not the worst behaved child in the class. She actually wanted to participate (I think it was the promise of ice cream sundaes at the end).

Colin & Devon's parties were Friday!

Colin's party was actually pretty fun. Maybe because his room parents don't plan too many activities, maybe cause it doesn't have the "one upmanship" that the other room parties seem to have! I really am not sure what makes it different, cause Colin is so much below his typical peers in so many areas (though these children all seem to love having him there) but this class he seems to really enjoy being in and sharing things with them when I watch him.

Colin makes me a necklace (which I am still wearing) after reading a wonderful story as a group and then they get a few cookies and capri sun. Simple and was just a special way to finish off what usually have been things that I dread going too.

Devon's school just had a small celebration and parents were not invited, but I know he enjoyed it cause I asked him how it went and he smiled and laid down on the floor and made his happy noise! (or maybe he was just happy to see me) It just made me smile and realize how loved I am and how much my kids need me!

Thursday, February 12, 2009

We passed the Car Seat Test!!!!!

Eric and I have been busy getting the house ready (if cleaning three to five days before anything.... means it will still be clean when he comes home LOL) ; We have taken the requisite CPR & First aide classes; watched all the videos and I am supposed to learn how to take care of a baby on Friday (I guess previous experience and having seven counts for little!)

But we passed the last hurdle this morning (other than the obvious of getting the orders and running out the door!)...... we sat up in our car seat for two hours! No saturation drops and no heart rate issues! Yeah for Emerson!!!!!

But of course I think I deserve a round of applause, I bought the car seat, made dad install it in the car (so it could be inspected) then I unhooked it from the van, and carried it with all my "crap" and my computer into the hospital got it to the NICU (it weighs 29 lbs and is dead weight) at 4 am! I also got it back to the car later on my way to the Melea and Adrian's valentine parties.

S0 I think mom deserves a little congratulations too!

Wednesday, February 11, 2009

Special Olympic Bowling Field Trip

I went with Colin & Melea on their field trip yesterday. Well I actually met them their after going to the NICU at 3 am to visit Emerson and spending time with him till 9:30 am. It is so hard, because I do love riding the bus..... but Melea was so excited to see me.

Colin kept signing "Mommy light" and "Mommy sleep" ..... I think he was trying to say that mommy needs to sleep and what was I doing out in the light.... I have only been seeing them in the dark (after 5 pm each day till they go to bed) and then back to the hospital.

So Melea was so happy to see me, Colin just kissed me and helped his teacher put on his shoes and went on down to the other end of the bowling alley..... no come with me or I don't want to leave my mom......

He is growing up so much....... However Melea just wants me to stay with her and stand next to her or let her sit on my lap. She is not interested in bowling or her teacher........ just hugging and loving mom (boy I did sort of need that!!!)

Well her super aide. Mrs R..... gets her down to the alley and Meleas does awesome. She is still under seven (just for a few more days) therefore she gets to use bumpers. Melea bowled a 75 and and 89. She got two strikes and won a participation ribbon. She was so excited and wore it all night long and wanted it on her PJ's when we changed at home later that evening!

Colin did super also, though I only managed to get down there a few times to see him. Though he bowled a strike every time I was able to watch...... four in the two games. He still gets to use a ramp (if he wants too) but no more bumpers!!!!!

Colin won a silver medal for the day for his age bracket! He was not at first that interested in the medal but after Melea wanted it ..... he got very proud and very excited. He wore it home after school on the bus and let each of his siblings and mom try it on! It was really exciting to see how proud he was and how he tried to tell Miss Lynn and daddy what he did to win the medal (and it was really cool cause it was made out of metal and really nice!!!!) Adrian was a little jealous!

Tuesday, February 10, 2009

"No Nose Emerson!"

I took Colin to visit Emerson today. He kept singing "no nose" and pointing to his own face. Now I am such a horrible mom cause I just nodded and smiled at him and pretend I had a clue of what he was trying to say! He just kept repeating it and was so excited!

He usually is really excited when we visit Emerson, so I did not think this was that unusual. All the way home we was telling me "no nose"! and "feel good"

About two hours later I realized he was trying to tell me that Emerson had nothing in his nose!!!!

Which I knew....... his feeding tube came out that morning, but I was surprised that Colin remember the tubes and was really so excited to learn that he was realizing that this must make Emerson (or possibly himself or me) feel better. Now I just have to wait for him to quit asking when Emerson is coming home....... he is just as annoying asking me everyday as I am sure I am to the doctors!

So congratulations Emerson...... no NG tube today!

Sunday, February 8, 2009

The Zoo and the other kids!

Miss Kay;a and I took the children to the zoo Saturday (in between my NICU visits). But he weather has been so nice we just had to get out and try the new quad stroller!!!! It just wasn't the same without Emerson, but Miss Kayla and I really were as excited about the stroller as we were about the 60 degree temperatures.

It was not the best zoo trip we have ever had. They have the high way all torn up, so it took forever to get into the parking lot after we got to the Zoo area. (35 minutes of mom why aren't we moving....... I love irony in the fact I was so excited for them to learn to talk...... then I was just praying that we parked before my patience wore too thin!)

We had to get lunch...... and of course my kids do not understand "lets wait till 1:30 pm.... crowds will be less....." Cause when they are hungry, they are hungry! So we waited in another line..... almost 40 minutes to get food with Melea and Adrian in line with me...... talking to me about how long the line was and crying how hungry they were.

Irony of irony, as we got one away from ordering, Adrian had to pee!!!! I told her she had to wait....... we weren't getting out of line, Kayla had the other kids outside watching the geese and other water foul while trying to round up enough chairs for the family. I really wasn't sure whose job was worse!

We all enjoyed our lunch. The kids got a kick out of feeding the ducks and geese the french fries. (not the original plan), but Devon decided to toss his food off the table and it made it down onto the melting ice in the pond. Adrian and Colin were so amazed that the birds were not slipping on the ice as they fought over the food!

We then went to the reptile house to see the snakes...... we found out we do not like hills with the new stroller!!!! Course I really want to have a zoo that is not built on hills to make MY LIFE easier! But we managed to make it up the big hill and spend about 25 minutes looking at all the reptiles and amphibians in there till the low light made Devon angry!.

We had to sing to Devon all the way through the ape, and chimp exhibit (all of us .... including Adrian & Melea while Colin held his hand). We then went to the carousel..... and took a whirl, though Miranda was so adamant that she wanted to ride again....... she turned around and climbed back on after we had left and were loading up the stroller (she climbed under the bars)!

We then went to see the bears and the penguins and puffins!!!! That stroller is huge.....33" across but we made it in and out the door at the penguin house! That was really exciting. Devon and Miranda both really enjoyed the penguin house today and tried to tell me about them. Eliza does the best sign for penguin with her whole body!!!!

We then stopped at the front of the bug house to play a little. Colin, Melea and Adrian climbed all over the large beetle!!!!! They had a blast for almost 10 minutes. Then they started posing for photos!

I love taking their pictures!!!!

But the coolest part was when Devon signed play!!!!! I decided to let him out of his wheel chair at this time because there were only children bigger than him on the bug or around at that moment. (remember he still likes hitting other children smaller than him when he wants to play with someone)

Well he took my hand and we both walked over to the bug, he pointed to it and wanted me to help him up! He said mom and pointed!!!!! Well I let him climb up and watched him as he made plans on how to get up higher and closer to Melea (she is his new best friend and substitute mom)!

It was amazing to see him making these plans and then see him smile as he carried them out! Melea was jumping up and down on the bugs head cheering him on and Colin ran around the side to "catch him" if he feel off...... OK maybe he was going to hit him and that encouraged Devon to stay on...... but we can think he would catch him!

Devon finally made it up to the head, and held on with Mom and Kayla in arm's reach...... but I really did have to step back to take this photo..... we were both amazed......especially with the fact we really forced ourselves to stay a the zoo when he was having one of his "pumpkin moments" and the onlookers were staring at the crazy lady singing "Itsy Bitsy Spider " for the 30th time!

Course he "slid / plopped off" a few seconds after I snapped it, but it was amazing!!!!

Next we stopped for pretzels and funnel cakes before we were to go home. Adrian went up to order with me this time, while Miss Kayla got every one juice and sat down and got ready for the bathroom parade to come. Adrian spent about 5 minutes telling me how much she likes pretzels and NOT funnel cakes...... they would be an "unhealthy" choice. Now I love pretzels and so does daddy (he never had a funnel cake till last year..... I guess not enough Church festivals in upstate NY)...... so Adrian had to have a pretzel to share with Melea ........ So I bought two of each!

The kids were waiting and really hungry again! They all asked for a piece of pretzel. However I found out none of them really wanted them....... Melea handed me back her chewed on piece and Jordan tried to put it into my mouth when I leaned over to check his juice box...... just what I wanted pre-chewed pretzels!

This whole time Adrian is telling all of us how "bad" the funnel cakes will be....... well they finally are ready, I go get them....... everyone now looks like they are having fun dumping powdered sugar all over their hears..... Colin looks the best, next thing I know Adrian has shoved her pretzel to the side and is devouring Melea's funnel cake!!!!! I get told she thought a "pretzel" was a funnel cake, and she really wanted the one with the white stuff!

Devon also successfully tried funnel cake for the first time! This time it didn't get spit back out at us and while Kayla took Melea, Colin and Adrian to the bathroom he kept trying to eat their parts that were on the table after he finished his! It was amazing to see him keep signing more and please. I had to go back and buy a third!

After our fun and long day at the zoo.... I took the kiddos home and then went back to spend the night with Emerson at the NICU! But it sure was a fun day with the kid!