Bye-bye Bubbas!

(We still have to celebrate one more time and then I'll try to get a Christmas recap post done.)

As you know, we have been trying to get rid of Isaac's bubba (pacie) for a while now. When I say try, I really mean we've meant to try:) Every time we say we're going to take it away, he gets sick or something else happens and we feel too bad taking it away. This has been going on for 2 years now!

I took him to his first dentist appt this week and it wasn't good. He doesn't have any cavities, but his mouth has already been damaged from the darn pacie. His palate is not forming right and his teeth are spaced/coming in all wacky. The dentist also said that his speech is being affected (which we already knew) and so has his swallowing. Yikes! He also is very "oral defensive." Anything they put into his mouth, he immediately tried to suck on. (I have noticed this when I brush his teeth, but never thought it was because of his pacie.) He'd open his mouth for a second when they asked, but then he was back to sucking on their tools and fingers. Double yikes!

So Dr Steve had a discussion with Isaac about getting rid of his bubbas. He got so sad. His little lip came out and tears were in his eyes. He didn't start crying until we were leaving the building. Talk about making me want to cry! Poor baby! But, I knew that this was the perfect time to get rid of them since Dr Steve told him they were "breaking his teeth."

When we got home, we gathered up all the pacies we could find. (I know there are a bunch more that we couldn't find.) He wanted to take a picture of them and then we "mailed" them to his buddy Baby Tristan. He was actually okay with it, but my parents were still in town so that was a good distraction. The first night went okay. It took forever for him to fall asleep and he was up several times, but it wasn't as bad as I thought it would be. He was thrilled the next morning then Baby Tristan "mailed" him back a new DS game. I really thought we may be in the clear.

He started getting a little stuffy on Tuesday and by the evening he was coughing. I never would have taken the pacies away on Monday if I had known he was going to get sick! Tuesday night was pure misery. He just could not settle down because he didn't have his pacie to sooth him. It was like he was a drug addict withdrawing from his drug (pacie). He was screaming, sweating, shaking, inconsolable, wouldn't let me touch him, yelling for his bubba, etc. It serisouly broke my heart. I wanted so badly to give it back to him, but we already went through the whole thing about Baby Tristan and I knew if we gave it back to him, we'd never be able to get rid of it. It was a LONG night to say the least. I don't think we slept for more than 30 minutes at a time and then he'd be up, realizing he didn't have a pacie and start the whole screaming/shaking stuff again.

He was much more sick yesterday (croup cough and lots and lots of snot). He wouldn't take a nap though because he wanted his bubba. I dreaded putting him to bed because we were all exhausted and I didn't want to repeat the night before. But, it acutally went really well. It was probably due to the fact that he was completely exhausted or he was knocked out from the Benadryl I gave him. He woke up a few times, fussed, but then put himself back to sleep. He still has his maymee (blanket) and now snuggles with a stuffed "ducky" as well. Although he seems like he's feeling worse today, so we'll see how tonight goes.

(Disclaimer: I always give him Benadryl when he has a cold now because I have noticed that when I do, he hasn't gotten ear infections. So, I didn't just give it to him to knock him out...although maybe I should have thought of that Tuesday night! However, now that I know he can sleep without his bubba, maybe the thought has crossed my mind to keep giving Bendaryl to him every night until he's consistently sleeping through the night without it. HA!)

Merry Christmas!

Wishing you all a Merry Christmas and a Blessed 2011!!

Christmas card runner up:)

Christmas Card runner up :)

One down, 2 to go

Caleb had his over night oxygen test last night. The respiratory therapist came to our house and showed me how to set it up. At first he showed me a plastic clip that would clamp onto C's finger. I told him that would NOT work because A) Caleb has sensory issues and that would drive him crazy, B) It looked like an adult sized clip and he has skinny minnie fingers, C) It was easily removed and a certain someone was very intrigued with the little red light inside...aka it would never be on his finger even if it did fit and D) There was no way it would stay on all night unless I stayed awake and watched him sleep. He also brought one that tapes on the finger, but was also for adults and one like the kind he wore in the NICU. That's the one we ended up using (another advantage of him being small!).

I knew that this wouldn't be an easy test to do because of Caleb's sensory issues as well his need to know everything about everything. I set it up and he instantly became anxious about his heart and toe (where I put the probe). He also became obsessed with watching the monitor and his numbers. (Which ironically Joel and I both commented on the fact that we too instantly went back into the mode of constantly watching his monitor, just like we did in the NICU). After a lot of reassuring that he was fine and the test was just to show the doctor that his lungs were okay, he finally fell asleep. In the 2ish hours I laid with him, his sats never went below 97% (which is what he is when he's awake). I am a bit worried about his resting heart rate because it stayed in the low 100's snd upper 90's. I'll have to ask about that at his appointment.



He started yelling for me at 5AM after he inspected the monitor and noticed that it was "blinking yellow!!!" This means that it wasn't picking up his sats. I had no idea how long it wasn't working because they turned off all of the alarms. And then I couldn't get it to pick up any readings. I called the company when they opened and they said they only needed 4 solid hours in order to get a good reading and they would come and check to see if we needed to repeat it. The man just called me to tell me that the monitor was actually on for a solid 7 hours and that the "unofficial" results looked good! He only had a total of 44 seconds where he was below 89% and most of the night he remained in the mid 90's. (He was never above 98%, which isn't surprising and is still okay.)

So hopefully he has passed test one of Dr Crazy's plan! Please pray that the next 2 go just as smoothly and also have good results!

Marquette Game

Caleb was invited to attend another Marquette basketball game, courtesy of Buzz's Bunch. He was so excited about it, until we got there. Then he started to get nervous/anxious about it. He didn't want to talk to the players, play basketball, get autographs...nothing. We had to peel him off Joel so he could be in the group shot. Once the game started, he was fine. He didn't seem to mind the noise and had fun cheering for the Golden Eagles (and yelling "Miss it! Miss it!!!!" when the other team was shooting free throws.) I think it helped that we had front row seats:)




This little man had no trouble on the court. (We were so nervous to bring him because of his unending tantrums lately, but decided that we should because he gets left behind so often when Caleb has appointments.) I am so glad we brought him. He had SO much fun and was so good.



Enjoying a little pregame popcorn!

First snow

We had our first big snow the weekend before Caleb's birthday (and then more this past weekend.) The first snow happened to fall the same day as our annual ride with Santa. I was very worried about the trip this year because of Mr Tantrum Isaac. I just never know how he's going to act and we'd be stuck on a tractor with lots of people in the freezing cold. He HATES to wear a coat, so think about how hard it was to get him into snow pants, boots, a hat and mittens!

He actually did very well. Thankfully one of our friends left a pink Dora cup at our house and I brought it along. Right before we left the little cabin to go on the ride, I filled it up with hot chocolate. He thought that was pretty cool. He only fussed a couple times and thankfully I brought Bubba (pacie) along for the last stretch.


Cousins!


Sammy and Sammy Jr.

Caleb was dying to play in the snow, so when we got home he got to help Joel with the driveway. Isaac threw a fit, but eventually went out for a little while. Caleb and Joel stayed out until after it was dark. And Caleb was so upset when he had to come inside. He LOVES the snow! (Although he wouldn't let me take pictures of him...boo!!)

RIP Chain

Just as I predicted, Chain did not make it. Isaac was actually very upset about it.

So, Chain has already been replaced (This time for 28 cents instead of 3 dollars!). This guy/girl is much bigger and much more active. Maybe we can keep this one alive longer than 48 hours?!

What do you think Isaac named his new fish?

Chain, of course:)

Introducing....

Larry and Chain!!!!
The newest members of our family! Caleb has been asking for a fish FOREVER. JOel and I used to have a huge tank of beautiful fish when we first got married, but it became too much work. So we decided to start small and let them each pick out a goldfish at the pet store.


Larry:
(Caleb's. He has been saying for months that he thinks that Larry would have been a better name than Caleb. He even wanted me to call him Larry one day. So now his dreams have come true to have a family "member" named Larry!)


Chain:
(Isaac's. No idea where he got the name. Maybe because it rhymes with Pane, his imaginary friend??! At first he didn't want a fish because he "hates fish." But then he saw Caleb's and of course wanted one too. However, he keeps asking "When we gonna eat him?" Isaac has done extremely well with not touching or bothering the fish, however I don't think this little guy is going to make it. He barely moves and has been floating sideways a bit today. Boo!)

Mr Focus

As you know, Caleb has very little focus and doesn't do one activity too long. Isaac on the other hand will sit and do an activity for a long time. I am amazed by his ability to focus. He loves playing the Leapster (something C has no patience for), Cool School on the computer, board games, puzzles, coloring, the list could go on. He would sit in front of the TV all day if I'd let him too:) He's also very content playing by himself and doesn't constantly need to be directed or entertained. He knows all of his numbers and most of his letters. He can also beat me in Wii games.

The other day I asked him if he knew how to write his name. (I have only helped him do it a couple times.) I knew he could write an "I" because he's been doing that for a long time, but had no idea he knew how to write the rest. He got out some paper and a marker and started to write it. He needed help with his "s" but he did the rest himself. I was impressed! (I wish the pic would have turned out better.) When he's having one of his million tantrums everyday, I have to remind myself that he's not even three yet. He just seems so much older to me.

Isaacisms

Isaac continues to amaze me with his vocabulary. I want to write down a couple cute things he's been saying lately.

"I wish my shirt has a neighborhood wike yours." (hood)

"Lets open my elephant calendar." (Advent calendar)

"Lets watch Cat into the Hat." (Cat in the Hat)

"I wanna go to Toys For Us." (Toys R Us)

"I wanna wear my jeans with da seat belt" (belt)

"I want to go to my Uncle Chuck's house. I hate it here." (I am not making this up. How old is he again?!)

He also has an imaginary friend whose name is "Pane Mikey Teisl." Isaac and Pane play together often and it's so cute to see him "talk" to his friend. He often blames Pane for things that happen, like spilling milk or knocking down pictures with a ball.

Five years old....WOW!

I still cannot believe our baby is FIVE! He's been counting down the days and is thrilled that he's not "four and a half" anymore. We had a little party with our friends and their kids and my parents last weekend (he'll have another family one in June for his 5.5 birthday). He decided he wanted a "Corey Hart" (from the Milwaukee Brewers) cookie cake. I tried a couple places and they couldn't make it since it's considered "free hand" but the good old grocery store down the road came through! I think it turned out SO cute! And he loved it.


A group shot of most of the kiddos.


He had a great time at his party and was spoiled with many nice gifts. I think his favorite one was the garbage truck from his Uncle Tristan and Auntie Colleen. (After all, he wants to be a garbage man when he grows up!) It's been the reason for many fights between him and Isaac. So I think there's another garbage truck coming to our house in the Christmas future.

Today, I got to help out in his class. It was great to see him trying to socialize, however he doesn't stay focused on one activity to really play with anyone. He continues to bounce from thing to thing to thing. We made reindeer cookies for his class, which were a huge hit.



After school, I took him to a bakery and let him pick out something for desert and so we could sing Happy Birthday to him again. He picked out little peppermint chocolate cakes for him and Isaac. He made the comment "Good thing they had two of the same one!" He knows his little brother too well and that it would have ended in a huge tantrum if they weren't the same. Of course Isaac needed candles too.



His all time favorite present was the Ford Mustang that Isaac picked out for him. He LOVES it. Mustangs are his latest obsession. It's meant to be a collector thing and not a toy, so of course it's already been broken a couple times. Thank goodness for super glue. I tried to get a picture of him with it, but no such luck. Stay tuned.

Like I said, I cannot believe that he's 5 years old. The little baby the docs told us most likely wouldn't survive. He has endured more in his 5 years than most people do in a life time, but you'd never know it. I was pretty emotional this year. I am not sure why...maybe because five years seems like some sort of milestone? I don't know. I am just thrilled that he's here and doing so well. He's one tough cookie, that's for sure! HAPPY BIRTHDAY CALEB RYAN!!

Testing, testing, 1,2,3....

Caleb had his pulmonary appointment today. Since his pulmonologist left the clinic, we saw his new doc today. I met her a long time ago, when C was 6 months old and in the hospital. (I had no idea who to pick as his new doc because we've seen the same one for 4.5 years!) She was very nice and thorough, but she seems to follow the Children's Hospital of WI's "policy" of test, test, and retest.

She is VERY concerned that his lungs have not really cleared up at all from his chronic lung disease (from being so early and on the vent for so long). I have been concerned about his all along because we were always told that they'd clear up as he got older and that he'd continue to make new lung tissue until he's around 6 years old, which would make his x-rays look more clear. She's also concerned about how poor his pulmonary function tests (PFTs) are. This was kind of a shock to me because his old doc (who was the head of the dept) always told me they were "okay" and the reason that they weren't the greatest was because of his age and ability to do the test correctly.

To make a long story short, she wants him to have an overnight pulse ox study, where they will look at his oxygen saturations while sleeping (done at home), a chest CT, and a more in depth PFT studies. (The last one takes 80 minutes...we'll see how long it takes for him to lose his cool on that one.) She also brought up the possibility of another bronchoscopy or doing an open lung biopsy. She better have some pretty good reasoning before we agree to even the bronch. At this point, we are completely against doing an open lung biopsy (which would involve cutting him open, taking a piece of his lung, stitches, chest tubes, hospitalization, etc.)

I am totally for the chest CT. Most kids with his immune deficiency have one every year to look for infections that may be hiding out. The other two things, I feel are a little unnecessary. But since they are noninvasive, I agreed to them. However, once we get the results get ready for RN mommy to come out and question, question, question their next moves!

I have to share this too. Most of you know that Caleb cannot sit still for long. We had to wait over 45 minutes for the doc to see us. By then I had exhausted all of my "tricks" to keep him entertained. When she finally came into his room, we first did a lot of talking. By then Caleb was going through he nurse server. I figured there wasn't anything in there that could hurt him, and told him just to look with his eyes. The next time I looked up, he was standing on the exam table. While looking in the drawers, he found the ear pieces for the otoscope (the thing they use to look in ears), climbed up on the exam table so he could reach the otoscope, which was high up on the wall, put the cap on the otoscope and was sticking it into his ear, and trying to figure out how he could take a look. Think he's been to a few doctor appointments?? HA!

Night Day at the museum

First of all, HAPPY THANKSGIVING!! We have so much to be thankful for! I worked yesterday (and after that experience, I am very thankful that no one in my family has manic depression....). My mom had a delicious meal ready when I got home. I don't have any new pics of the boys because I think I have reached my quota of pictures for the year. They won't even look at the camera anymore..boo! Anyway, my parents are in town which is so nice. The boys love spending time with them and they are spoiling us rotten!

Caleb had another field trip for school last week. They have been "studying" rain forests, dinosaurs, and Native Americans. The Milwaukee Public Museum happens to have exhibits about all of them. When I first learned about the trip, I requested that Caleb have one of his teachers be his "buddy." (They have several parents go on field trips and they are "buddies" for their child and one or two more kids as well.) For one, I wasn't sure how he'd handle the exhibits because I have been there and I thought it was kind of creepy. He was deathly afraid of the dino exhibit at the zoo this summer, so I really thought he'd freak while he was there. And I also wanted him with someone who knows him well, because he's a BUSY guy these days and I didn't want him driving another mother crazy!

His teachers asked me if I wanted to go along on the trip, and I kind of sensed they really wanted me to go. (I would have preferred to wait and go on the trip to the art museum, but oh well!) So off we went! Caleb did really well. His teachers did an awesome job prepping them for the "scary" parts telling them that the museum workers would try to "trick" them by playing the dino sounds. So when we got that part, Caleb said to me "Mom! It's just the people trying to trick us. It's just a recording!" He also was a great listener and I could tell that he had listened in school too because he was telling me all about the things we were seeing.





Of course his favorite part was the bus ride. And on the way back he got to sit in the front seat and watch the driver drive. He was fascinated. All in all, it was a great trip and I am glad that I got to go!

Just Hangin Around

Here's a pic of the boys' latest obsession:


Sorry for the lack of posts...nothing too exciting has been going on (which is sort of good!) We've been playing outside a lot, enjoying the last few days of warmish (40-50's) weather.

Lets see...Isaac has decided that naps are not for him. This is crazy to me because Caleb still will take naps when he doesn't have school. Bedtime has been a nightmare with Isaac. Even though he goes to be around 8-8:30, he's up and down the hallway, playing and reading books in the dark in his room, singing, talking to himself and his "friends" that he sleeps with, trying to sneak into Caleb's room to wake him up, etc until 10:00PM. So now we are learning to deal with his "witching hours" of 4-6PM...AKA tantrums galore, but loving that once he's in bed, he's out.

Caleb has a new girlfriend. Her name is Emily, who is another cutie from his class. When I asked him if he ever played with or talked to her, he said "No." HA! We finally got to go to library class this week and Caleb sat in the front (by himself) and PARTICIPATED!! He sang the songs, did the actions, sat still and listened to the stories, and answered questions!!!!! I was so proud of him. I asked him if he does this at school now, and he said no. Baby steps, right?!

They are both loving all of the Christmas catalogs that come in the mail. Isaac wants just about everything he sees, but the thing he talks about most is "Hungry, Hungry Hippos." He must have seen it on TV because he's never played it before, but he keeps telling me "When you get a million balls, you win and if you don't get a million balls, you lose!" I sure hope that there's not a million balls included with the game! Caleb wants a "real live drum set" for Christmas...shoot me now:)

This is Daddy

Caleb doesn't take his time with anything (well, except eating!!). Every art project, worksheet from school is quickly rushed through. I helped our in his class the other day and many of his classmates work a long time on their projects, putting in lots of detail. Not Caleb. I am not sure what he's in a rush for since he really doesn't go and play with anyone/thing after he's done. He just wanders around. Maybe that's fun to him?!

This week they are talking about dinosaurs. This is a picture of his art project. He was supposed make up a new kind of dinosaur, name it, and tell about it. Although I could still tell he hurried with it, I was kind of impressed that it sort of looked like a dino and that he made up a little bit about his blue-eye-a-saurus. Then I saw the last sentence. "Daddy is on the other side."


I flipped it over and this is what I saw. I laughed for 5 minutes straight. I knew exactly what had happened, even though I wasn't there. HE wanted to draw a picture of Joel. I am sure one of his teachers told him he could draw a picture of his Daddy after he drew a picture of his dino. He rushed through the dino and then drew an elaborate picture of Joel and the things HE likes to do and eat. HA!



He must have Joel on his mind the entire time he's at school because almost everything he does ends up with "Daddy" on it somewhere. Joel has blue eyes (Caleb has green) so I am sure that is where his blue-eyed dino came from. And they have a "writing station" where they are supposed to copy the word of the day. Caleb's never says the word of the day, his always says "Daddy 100" or "Joel." And every art project he brings home says "For Daddy" on the back. He sure loves his Daddy!

Dropout

Tonight Caleb told me "I am gonna quit preschool. Why did you sign me up for it anyway?"

I can't wait to hear what he has to say about ALL day, EVERY day kindergarten next year! I bet he'll be begging to go back to preschool:)

Halloween-a-palooza

It's finally Halloween! We have never celebrated this holiday as much as we did this year. We started off last Friday night with Boo at the Zoo. I think everyone in Milwaukee County decided to attend so it was CROWDED. My patience was tested as we waited a HOUR to ride the darn night train...a wait that is usually 5 minutes at the most. The boys had a blast though and that's what counts, right?!

On Thursday, we met Katie, Owen and Sam at the Not So Scary Halloween Party at the Betty Brinn Museum. Again, CROWDED! But, they have added a ton of new things to do since we were there last and the boys didn't want to leave when it was time to go. It will be so much more fun when we go back next time. We usually have most of the museum to ourselves when we go in the AM! I should mention that a woman pretty much accused me of stealing the UPS logo and gluing it on Caleb's costume. She was interrogating me and would not believe that I bought the costume at a store! She kept saying "UPS doesn't just give out their logo like that. They are pretty tight with their brand." I should have told her that she blew my cover and that I did indeed beat up our UPS man so I could cut his logo off his uniform and glue it on a brown outfit for Caleb. And I won't even go into the story about the drunk/high woman (with her kids) sitting across from us at the craft station....unbelievable!

Friday, Caleb had his Halloween party at school and of course his mini-me had to dress up too!




And last night, we went to the Herda's annual Halloween party. Their subdivision shuts down the streets and it's one giant party. Caleb was really into trick or treating this year. He went up to the houses with his friends, without us. Isaac wanted no part in it. He sat in the stroller and fussed until I took him back to their house 20 minutes later. Caleb stayed out almost 2 hours!



And today is Halloween and we didn't do anything (except go to church and have a Packer Party at Grammie's and Grandpa's.) We could have gone trick or treating in our neighboorhood, but the boys already have enough candy to last them until next year....

Happy Halloween!

(When I posted this, I thought it WAS Halloween because we had just gotten back from trick or treating and having a great Halloween party with our friends!)

The Great Pumpkin(s)

There's been a minor obsession with pumpkins around our house the past few weeks! Each time we left the house, Caleb insisted that we take pictures with them. (I won't bore you with all of them, but here's a couple. Please ignore the pacie that still remains in our TWO AND A HALF year old...)




We finally carved them on Sunday. Caleb was so excited to do it. Isaac, not so much. (If we'd take him to therapy, I am almost certain that he'd have some sort of sensory disorder too. He HATES to be dirty!) Caleb jumped right in and took out all the "guts." He picked a "mad" face and had a blast helping carve it. Isaac cried most of the time because "I don't wike pumpkins!" He threw a bigger tantrum when I told him I wanted to take his picture with it. According to him, pumpkins are "too dirty and stinky."






I think they turned out pretty cute. The past couple days we've had 60+ mph winds..not great pumpkin lighting weather. Hopefully they'll last until Halloween!