Tuesday, January 29, 2008

Beans and Baby

Tonight Mommy was fixing some dinner and she thought I might want to play with some of it. It looked like a string, but it was kind of squishy. She called it a green bean. I didn't think it was good enough to try putting in my mouth. But I did toss them down for Belle to eat.


After dinner, Mommy and me went to her bedroom to put a whole bunch of clothes away. I played on the floor while she was working, and I found a new friend. She's super cute!
(Mommy note: Another long video, fair warning...lots of ridiculous mommy-talking.)

Pretty percussion

Sunday I got to wear another new dress. This one is from Mommy's Aunt Chris and it's been in the closet for a long time since I'm kinda small. It says 6M on the tag, but it just now fits. Mommy says it's good to be petite sometimes, so it's ok. Thank you Aunt Chris!


Monday morning Miss Judy came to see me. She brought some new things for me to do. She had this tray with some rolley things on it, but I liked the tray more than the rolley things. She wanted me to pick them up, but I just pushed them out of my way.


Mommy took some movies of me playing with Miss Judy. It's kind of long, but it's mostly for the grandmas anyway! Ha ha! They don't mind long ones because they like to see me play.


After Miss Judy left, we went to see Dr. Y. I looked at my book while we waited for him to be ready.

He has a new nurse, Miss Maria, and she put me on the silly scale. I was 16 lbs 8 oz, same as a couple weeks ago, so that's good. I didn't go down any. He said I looked really good and was doing what I was supposed to do. Miss Maria gave me shots with sharp things in my legs. That was no fun, but Mommy said I did really good because I only cried til Mommy picked me up. Then I didn't complain any more after that.

Monday night Mr. Kevin came over to talk to Pop about his computer. He did some exercises with me on my new ball. He does exercises with people for his job, like Miss Robin does with me.

Saturday, January 26, 2008

The big bath

Today, I took a bath in the big people bathtub. Mommy said since I can sit up now I might like to play in the big tub. I thought it was pretty fun! I especially like the spray thing.

Tonight Mommy and Pop went to a party with other mommies and daddies who have extra special kids like me. I went to see Miss Debbie while they were gone. Miss Aubrey was having a party at their house, and everyone was so nice to me. They said I was the star of the party! Thanks for letting me come to the party, you guys!

Thursday, January 24, 2008

Retropost: Fun exercise

Tuesday 1/22
Miss Robin came again. She made me practice my side belly muscles again. Since I always lean and try to help Mommy type, they put her computer down so I could try to get it while I was exercising. I was watching my giggles video because I think it's pretty funny.


Miss Robin said I was getting stronger and faster at getting up. Sometimes I forget what I'm supposed to move next, so she has to help me a little. She kind of tickles me under my arm to get me to remember what I need to move.



Auntie Rachel got me a new fun thing last week when she bought all my new clothes. We finally got to try it out today, and I thought it was very fun! It's going to help me make my legs stronger, because I don't like to use them to hold me up.

First I just thought it was a fun chair. Then I found out I could bounce and do what Mommy and Pop call a "happy jig."



I had a good time, but I kept hiding from Mommy.




Wednesday 1/23

Miss Robin, Miss Judy, Miss Louise, Miss Deb, and Miss Melanie all came to my house!! They came to talk to Mommy about my IFSP. It is the stuff that they want me to work on for the next few months. Mommy might talk more about it later. It was kind of fun to have so many people there to talk about what I was doing.

I did hear them say I was doing real good in some stuff, but they kept telling me I had to learn to eat. So much about the eating!


Thursday 1/24
We got a fun package in the mail. Miss Julie sent me some socks. When Mommy put them on, I had to check them out for a few minutes. They have panda bears on them, and I have ALOT of panda bears!

Wednesday, January 23, 2008

Retropost: Therapy and stories

It's time for me to get you caught up again. I'm trying to help Mommy get her work done around the house so she can have time to help me tell stories everyday again.

Here's some pictures from the last couple weeks.

Monday, 1/14
Miss Judy came to see me. She brought some pretty neat toys to play with. There was a big bowl that was kind of like the ones Mommy makes cookies in, but Miss Judy put me in there! She made it move so that I had to work pretty hard to stay sitting up. Then she had a neat blanket thing that we moved it up and down and played with. Mommy said we might get one to play with because Miss Judy said it would be good for me. It's called a par-u-shoot.


Then Mommy and I went back to the SJ town to see the work office again. And we went to lunch with Miss Karen (a new one!) at the new Toro that opened in SJ town. That is three days in a row at Toro! Mommy thought I might eat some salsa again, but I didn't feel like it today. Do I look like I want salsa to you?


When we got back to C town, we picked up Pop to go to his doctor appointment. I sat in the waiting room and played like a big girl. This is my new sweater that I got from Miss Julie. I think the stripes are really fun to look at.


Tuesday 1/15
Miss Robin came to see me, and she made me work hard like she always does. She told me and Mommy that I need to work on getting my middle parts stronger so I can learn to crawl and stand. So she had me practice getting up while she turned me sideways. It was hard!

That night Mommy gave me some little strings that she said I could play with AND eat. I looked them over, but I didn't think they looked yummy, so I didn't even try to eat them.


I told the stories about Wednesday, Thursday, and Friday here if you missed them.

Saturday, 1/19
I got to hang out with my Pop on Saturday while Mommy went to Miss Andrea's baby party. She's going to have two babies at one time! For dinner, Mommy and I went to Olivia's house to play. Miss Jennifer made dinner, and it had little strings in it, but I didn't want to try it even though Mommy said it was really yummy. Olivia was nice and shared her toys with me.


Sunday, 1/20
I wore one of my new outfits to church that Auntie Rachel bought me last weekend. Everyone liked it alot, but I didn't let Mommy get a good picture. She kept trying to get me to smile, but I tricked her and kept my mouth still. Then I just laughed at her when I couldn't keep it in anymore!


Monday, 1/21
Miss Sue came this morning to see me. She knows alot about what kids can see and how to make my eyes work better. She gave Mommy lots of ideas about games we can play to help my eyes get stronger and when I should get to take my glasses off for a while. She had a very neat book that I played with while she talked to Mommy.


I took a nap with Pop after dinner.


Pop and I made up a new game after we woke up. We call it A-Ba-Ba because that's what I say when we play. It's pretty fun. He holds his hand up by my face when he's ready to play, and I open my mouth and say Ahhhh. I like to play, and I'm even learning to do it by myself!

Tuesday, January 22, 2008

Tagged: Love and Hate

Miss Kari, Chanelle and Tristan's mommy, picked me to play a fun game! Sometimes people tell stuff about themselves, and they call it a meme. Then they pick others to play! So here we go... This time it's about things we love and hate. Mommy says that Miss Kari had a good idea to talk about things I love and don't like, since I don't know about hate yet. (Mommy says that's a good thing, too.)


I love my mommy.
I love my pop.
I love playing tickle.
I love bouncing.
I love family cuddles in the mornings.
I love taking naps with my pop.
I love strings, cords, and tubes.


I don't like to eat.
I don't like to drink.
I don't like to have things on my tray, so I throw them off.
I don't like making messy diapers because it hurts.
I don't like when Miss Robin makes me do hard exercises on Tuesdays.
I don't like when Mommy tries to clean my nose or ears.
I don't like Mommy to be away from me for very long.


How did I do? I think that's a pretty good list!


I'm gonna pick Tommy at Tommy's Journal, Ruby at The Zoromski Chronicles, Logan at Baeten Family, and Ian at Narrow Ridge to tell us about their Love and Don't Like lists too! (The Mommies can help if they need to.)

Sunday, January 20, 2008

Retropost: Weekend full o'stuff

The Saturday that came before this last one was not as cold as the other days. So Pop decided to do some work on getting the pool cleaned up from all the fall leaves and melted snow. Since it was nice outside, I got to go out too and watch a little.


He didn't think I'd be much help with the clean up, but I was good at telling him what needed to get done.


Miss Jo Ann came by that day too, and she brought me alot of presents! She found what she called a "sale" and so she got me some really cute things. This one has a fuzzy hat part.


This one is really soft and cozy, and my friend Olivia has one like it so we can match.


And this one is a pretty blue color. I didn't have anything this color yet!


That night, I played with Pop some while we waited for Mommy to get ready for dinner.


We went out to Toro and met Mr. Brent and Miss De there. It was a fun dinner, and a nice lady even gave me one of her birthday balloons. We got to see Miss Martha and Miss Chayo, but they were so busy they only got to come and say hello a few times.


Miss De let me play with her red ring things that she had on her arms.

On Sunday, I woke up and got to have some family cuddle time. I fell asleep next to Pop since he was all warm and cozy.

I was feeling all happy in church, so I was talking to Pop. He and Mommy decided to see if I liked the nursery, but they wanted to see if there was someone there that knew me. Pop took me back there and Miss Karen was there! So I spent just the last part of church with her in the nursery. My first time and it was kind of fun!

After church, we went to Toro again (see? we go alot, don't we?) with Miss Jennifer and Olivia, and Maddy and Gracie and Mr. Randy and Miss Karen. I got to taste a little salsa again, and this time I really liked it! So Mommy and Pop gave me little bits on the spoon, and they were happy that I was eating it. Mommy tried to give me water because she throught the salsa was too hot for my mouth, but I don't like to drink water. She should know that! I also ate some green stuff that Mommy likes alot. She calls is gwakamolee or something like that. It was very yummy, too.
(Mommy note...I LOVE that face!)

We took a picture of Maddy, and then her little sister Gracie wanted a picture too. She made a funny face when we told her to smile.

And this is Olivia...she's a silly girl, too!

Friday, January 18, 2008

Driving days done

Mommy and I got home from St. Louis this afternoon. We had a busy few days there, but it was fun too. We did have alot of car trips, so I'm glad we don't have to drive more for a couple days.

On Wednesday, we left Pop and Belle at home and Mommy and me went to St. Louis. First we went to Auntie Rachel's house and then went to get some dinner with her and Mr. Patrick. It was a fun dinner, but I didn't want to eat anything. Auntie Rachel tried to get me to eat some ice cream, and she sneaked it in on me! It was very cold but kind of good. Mr. Patrick told me some stuff he said I needed to know about life, and it's just our secret! I'm not telling!

After dinner, we went back to Auntie Rachel's and I took a nap on her because she was cuddly.

Then we got back in the car and drove down to Grandpa J's house. Grandma C was gone on her trip, but I got to see Grandpa J for a few minutes. It was my bedtime, so I couldn't play long.

On Thursday, Mommy and I went to see a new doctor, Dr. K. He was nice and his helpers were too. He said he could take this thing off my belly. Then we spent the day at Grandpa J's house by ourselves, because he left for a trip too. When it was almost dinner, we went up to the place where I got my glasses so they could help them fit better. Then we went to pick up Auntie Rachel to go shopping. She spoils me so good! She got me a whole bunch of new outfits and bows for my hair. Lots and lots!

After we finished shopping, we went to Auntie Skye and Uncle Jody's house for dinner. Mr. Patrick came too, so we all had a fun time and yummy food. Of course, I didn't eat anything, but they said it was good.

When it was time for bed, we went all the way back to Grandpa and Grandma's house to sleep.

Today we got up and packed up our things. Then we went back to the hospital. They took us back to the place we go alot, called the APC (ambulatory procedure center), and we got to see some nurses that we knew from other visits. They said I was so big!
They always put a thing on my toe to see how much oxygen I have. It has a cord on it, and those are my favorite! So I had some fun with that while we were waiting.

Mommy took me back to another room and then I fell asleep. When I woke up, we were going back to the first room and I felt sleepy. Mommy was there, and I found a big, fun tube to play with. This was only a few minutes after I woke up.

Here's how my belly looked before they got it, and then there's what it looks like now. All flat again! And it was SO easy! I didn't even cry or anything. Mommy and I are both very glad that we took care of this thing!


So after a busy few days, I was glad to be home in the comfy chair. And this is one of my new outfits, too...just in time for Valentine's Day!

Mommy report: Sleep, little one

I just took her back, laid her on the bed, and held her hand as she breathed the sleeping air. She did very well, and dozed off. I don't expect it to be but a few minutes til they're done. Technology is amazing.

Wow...as I typed "amazing" the doc came out and said they were done. That's a total of 8 minutes. CRAZY!!!

Gotta go help her wake up.... yay! It's done! That was SO easy!

Thursday, January 17, 2008

Get rid of it!

That's what Mommy told the doctor this morning about this thing by my button. It was a really quick visit, and they said they could do it. We get to stay here in St. Louis today and tonight then we'll go back to the hospital tomorrow for them to take this thing off me. Here's Mommy's part of the story...

They had said when we were there this morning that they thought they could do a quick Bovie procedure (utilizing electrocautery or electrosurgery), which is quite simple, with just an inhaled sedative. But when they called back a bit ago to give me the time, 11:30 am tomorrow, she mentioned that after reviewing her history, they'll need to have an anesthesiologist there. I don't know if that means they'll need to do a more invasive type sedation, but I kind of assume that's the deal. The procedure will be the same, either way. They're doing the procedure in the APC (ambulatory procedure center), which is where they did her PEG, button, and a biopsy, so we're quite familiar with it. The APC staff will be calling later today to give me the instructions for whatever prep we'll need to do, and I'll be asking them about the anesthesia.

Mommy life: Waiting room

We're at Children's in the waiting room for pediatric surgery... I love patient internet here!!! I can work while I wait. (Or read blogs...)

There will be news when we have it...

Wednesday, January 16, 2008

Simulpost: Baby Levi has gone home

This was posted moments ago.

WEDNESDAY, JANUARY 16, 2008 12:12 PM, CST
The following message is from Levi:
I got to go home today! No more tubes, no more machines, no more doctors, and no more pain! I got to see my papa too, and he sends his love to everybody. Most importantly, I got to see Jesus. I know it's hard for everyone down there, but let these words give you home and comfort:

"Let not your hearts be troubled. You believe in God. Believe also in me. In my father's house are many rooms, and I am going to prepare a place for you. If I go to prepare a place for you, I will come back, so that you may also be where I am. I am the way the truth and the life. No man comes to the Father except through me."

I love you all lots, and I will see you again.
Love,
Levi

Please continue to pray for this family as they mourn their sweet child. Thank you for all your prayers and kind words. It has meant a great deal to this family, I can assure you. I will pass on all comments to them, if you'd like to leave one.

Simulpost: Baby Levi's latest

In the next few minutes, Baby Levi will be taken off the ECMO machine, and his family is there to be with him and see how he responds. The concern now is his lungs, apparently. Here's the report from his dad this morning. Please be praying for this tiny one.


WEDNESDAY, JANUARY 16, 2008 08:42 AM, CST
Well, Levi had an uneventful evening. His pressures are up a little bit and his acid levels are better today than yesterday, which is definitely good news. The main problem is not the heart, but the lungs, and unfortunately, that may be an obstacle too high to climb. Until the last week, his lungs have performed well, and they have had no reason to suspect any lung disease or anything else. However, Dr. Gandhi said this morning that the lungs are much worse than he thought, and that there wasn't much that could be done for them at this point. He's not sure if the cause is something he was born with (most likely) or just a natural result of sitting around in the hospital waiting for his surgery (had to be done because of weight issues). The plan is still to go in at 9:30, to take him off the machine and see what Levi, and more importantly, God does. There may be an immediate indication that things aren't going to work, but it will be nip-and-tuck (not the TV show) for the rest of the week. Please pray for us and for Levi. All 5 of us (plus Levi) are here, and we are ready for whatever God gives us. It's going to be a long day, regardless, so pray for a miracle, and if we don't get one today, remember that his being here today is a miracle in itself. Thank you so much for your prayers.
Mike, Carrie, Arthur, Caleb, Clara, and Levi

Monday, January 14, 2008

Retropost: Fun and Work with Mommy

First a report from Mommy on the granulation:
We leave tomorrow (Wednesday) for St. Louis once again. We see the surgeon on Thurs morning for consultation and hopefully have the growth removed in the clinic on Thurs or in the OR on Friday. That's best case scenario. Otherwise, it may mean going back the next week for the actual removal. I'm sending pictures of the progress and how it looks currently and asking them to review the records from the GI prior to our appointment so we can hopefully get things moving in an expedited manner. We'll see... Here's a current pic if you are keeping track. Now back to your regularly scheduled story from Baby Boss Braska.

On Wednesday, Mommy had our morning play time. We had some giggles and tickles and silly time. See if you can find my new favorite game when I stick my face up close to Mommy's face. I do it alot and it always makes Mommy laugh.




On Thursday, I got to go with Mommy to a new work office. It's in the SJ town, so its a little car drive from our house in C town. The ladies there were really nice. Mommy did her work on the computer and I played on the floor. Mommy said the computer was being grouchy, so we didn't stay too long, since we were going to have to go back again.

On Friday, we went back to the office in SJ town. I took a nap while Mommy worked. But we had to go back to U town, which is by C town, and pick up something.


When we got to the office at U town, I got to see Miss Laurie!! She works there now instead of at Dr. Y's where I used to see her. She said I got so big! I'm so glad I got to see her again. I wish she was back at Dr. Y's, and Mommy does too!


Then we went BACK to the office in SJ town, then we went to the store, then we went by Pop's work, then we went home. Whew! I was glad to be home.

Psssssst...the sad part is that Mommy found out when she got home that we have to go back to SJ town again on Monday! Uh oh.

Simulpost: Update for Baby Levi

Here's the update for Baby Levi today. Some encouraging news, but he'll need prayers ramped up for the next two days to Wednesday.

MONDAY, JANUARY 14, 2008, 10:53 A.M.
Ok. We got good news, which has the potential to be great news. Dr. Gandhi said that Levi's heart looked very good and that the pressures were pretty good for the 5 minutes he was clamped off on ECMO. If not for the kidney and another new issue, he would have been able to completely come off today. Because he was so full of electrolytes from not getting rid of waste, Dr. Gandhi didn't want him to start off life without ECMO behind the 8-ball, so he is going to hook up the actual dialysis filter to the ECMO machine and filter Levi fully. There was a new issue that has developed with his lungs, which may or may not be serious, which involves little air pockets (called bleps) which develop and run the risk of possibly bursting and collapsing his lung under the pressure from the excess air. Because Dr. Gandhi now knows this situation exists, he can plan accordingly when he goes to take Levi off the ECMO machine. This will happen on Wednesday. Sometime that morning, probably 8:30 again, they will take Levi off ECMO and see how he does. Since the kidney should have fully went through dialysis for 2 days at that point, and because the doctor is aware of the "new" lung problem, and most importantly, because Levi's heart is doing so well, Levi should come off the machine in good condition. There is one caveat to this: there is no going back on the machine; if Levi can't make it, then God has a new little buddy in heaven. The rest of the week will be difficult, especially the watching and waiting while monitors go nuts after coming off ECMO (as the nurses and doctors figure out what levels to set the little guy at). Thank you all so much for your prayers. God has worked a great miracle here. Dr. Gandhi didn't expect him to get this far because of the weight and kidney issues, but he feels pretty good about Levi's chances of coming off ECMO on Wednesday. There will still be bumps in the road as we wait for the kidney to return to function (1-4 weeks), and as we wait to see how the lungs perform (complete unknown). Keep praying, and as we keep seeing, God will do the rest!!
Mike, Carrie, Arthur, Caleb, Clara, and Levi

Sunday, January 13, 2008

Simulpost: Prayers for Baby Levi

Please take the time to read about Baby Levi. For his precious life's sake and his parents.

Baby Levi was born on November 29, 2007 at 2 lbs 5 oz and 15 inches. He has hypoplastic left ventricle and has been in the hospital since he was born. His father is a friend of mine from church camp back in junior high and high school, and I hadn't seen him in close to 18 years until last month. Levi is in the CICU at Children's where we go for all our specialists, so we've been checking on him often. He finally got up to 3 lbs 12 oz before he had his open-heart surgery this past Tuesday, January 8. He has had some severe challenges since and is still on the ECMO machine to help his heart and lungs continue to function. Here is the update his father posted this afternoon.

SUNDAY, JANUARY 13, 2008 01:49 PM, CST
Levi is having a great day today. His pressures are up and they have been staying up all day long. The only small issue is that he had a bath, which made him mad, and then he started to show obvious signs of being in pain (his respirations started to increase). They gave him some pain medication, but that didn't slow his respirations, so they are now going to have to put him on a drip for the pain. The only problem with the drip is that it may bring the pressures back down. Tomorrow morning is the big morning. Dr. Gandhi will take the bandage off of Levi's chest cavity and check for clots. Then he will put the echocardiogram probe directly on Levi's heart to see how it is functioning. He will also visually inspect the lungs to see how they are performing. After this, he will make the decision as to how to proceed. This boils down to 3 outcomes. First, Levi's heart and lungs are strong enough and functioning well enough to come off the machine tomorrow. Second, Levi's heart and lungs are getting stronger, but he needs to stay on the machine for a couple more days. Third, there is something terribly wrong, and we will have to say goodbye to Levi tomorrow. These are listed in the order of preference, not the order of probability, but right now, everyone needs to be aware that tomorrow could be Levi's last day. It has been incredibly hard keeping the balance between praying for the best, while knowing the worst could happen. Keep us in prayer tomorrow, as we try to handle what God allows to come our way. The kids are feeling better and will all be here just in case. Thank you all for your prayers and I will try to update once again tonight before I go home (Carrie is staying here with Levi tonight). I will update in the morning when the procedure starts and then will update as soon as possible after we hear from Dr. Gandhi. Keep praying and God will bless each of us.
Mike


I simply can't imagine the hurt this must cause Mike and Carrie to watch their precious son struggle like this. I was privileged to get to meet Levi in person, and he is so, so tiny, it doesn't seem possible for him to have come this far, but he has been a little fighter. We're praying, as we have been every day since he was born, and I hope you will too. Please leave a comment here to encourage them, and I'll pass them along to the family. It means so much to them to know so many are praying for their precious child.

If you want to visit his CaringBridge site, click here.

Friday, January 11, 2008

Busy little me

I haven't forgotten about my stories and pictures, but we've been really busy. Mommy's been doing more of her work-work, so we've been going to meet new people and visiting her offices. I've got a few pictures to show you, but I have to keep the stories short since it's bedtime.

Last weekend we had a family playtime morninng in Mommy and Pop's bed. I think that's pretty fun, and we had some good cuddles too. They thought I should see if Belle would let me ride on her. I don't think she was liking it.


On Tuesday, Pop came home for lunch and we took a quick cuddle nap. I like when we get to sneak those in. Belle likes to get in on the cuddles too.


Tuesday night, the boys came over here for playing their games instead of going to Mr. Brian's. Mommy and I made a bunch of yummy snacks for them, and I decided I wanted to get in on the game. Pop says one day I'll learn how to be a geek girl, and that will make him so happy.

Tuesday, January 8, 2008

Mommy report: Granulation, day 14

Yes, it's still here. It hasn't gone away. It's not as big as it was, but it has settled in a plateau of sorts and doesn't seem to be decreasing anymore. It's been the same for several days now. It doesn't look as bad, for sure. If you want to see, click here. See? Not nearly as bad as it was.

I'm not sure what to do at this point. The GI doctor told me I could call them and they'd set up a surgical excision (removal) of it, which is fine with me, but it means another trip and procedure. I'm debating just giving it more time, as it doesn't really bother her, and I keep it covered in a gauze dressing, so it's not making the mess it once did. I think for now we'll wait and see, maybe for a couple more days or the rest of this week.

Monday, January 7, 2008

My own space

I've been playing in a new place the past few days. Mommy calls it the pack n' play, but I just call it mine. Mommy and Pop can't get in there, it's just for me. My piano even fits just fine, and it won't slide away from me when I play it. And I can see me in the mirror while I play, too.