Big Boy Keith

All is well

2008-07-26T23:25:00.002-04:00

Keith was discharged last Friday and things have been just perfect. It's like he was never sick. Back to normal!

He is definitely being a 2 Year old!

The tantrums are unbelievable! He is learning what time-out is for sure!

We have a lot of doc appointments next week, so I'll update then...

In the hospital, First time in OVER a year

2008-07-14T00:49:00.001-04:00

As you know if you have been following, baby Keith had his 2nd dialation last wednesday for his airway. Well, on Thursday night he got very sick. He had a LOT of vomit and diareaha all over himself & crib early friday morning. He was running a temp but not an alarming temp. He slept on & off on friday but seemed to be improving. Actually on Saturday we thought he was completely back to himself & 100% ok, must've just been a bug he caught maybe at the hospital. In fact he was playing, eating fine, went for a walk with us, very normal saturday we thought, hes ok.
Then today he was quite "junkie" in his airway/breathing, some blood from his trach during routine suctioning when he woke this am. He didnt seem to want his breakfast but ate it as we encouraged him to. He was very sleepy and fell asleep in his playpen at 11am, 2hrs before his normal nap time. He woke about 130 very much in respritory distress, coughing, gagging, very junkie. He was VERY hot when Kevin picked him up. We checked his temp, and his fever was back and worse than h is temp was on friday. It was 105.3 rectal. Anyhow we all packed up and went downtown to Univ. of Maryland E.R. where he knows the place well by now, and they all know and love him there too. After 1 hr in E.R. we were told he had Pneumonia in his right lung, probably due to him vomiting on thur. night, aspirated an
and pneumonia set in. We were told it was normal that perhaps the tummy bug he had he WAS better by fri night and saturday. But, the pneumonia symptoms take a couple days to show up. We spent 5 hrs in E.R. then was moved into IMC. He seems to be improving some already with the antibiotics and care hes recieving.
Mommy is staying with him all night at the hospital.

Save The Internet!

2008-07-11T19:30:00.001-04:00

Supposively, congress is trying to pass a bill that will allow our internet companies to say WHERE we can go and what we can do on the net! WTF!?Sign the bill now to stop this!http://savetheinternet.com/

4th Of July was great, except for the rain

2008-07-10T13:42:00.002-04:00

We ended up spending the day at the Dundalk Heritage Festival. It was pretty nice, but the all of the things we planned on doing there, kinda went down the drain. The carnival looked like it was from the 1950's--- and soooo unsafe. We opted to just not do the carnival part.
We walked around alot, and later in the evening it rained.

Finger Painting was a big Hit!

2008-07-10T13:36:00.003-04:00

I wasn't sure how Keith would react to finger paint because he has a lot of sensory issues--- but he enjoyed it! He really liked smearing it all over his body too. Thank goodness we played outside with it!
He loved rubbing it in his hands like lotion. He had more fun putting it on himself, then putting it on the paper-- but atleast he was enjoying it!

Mommies spaghetti is the bestest!

2008-07-10T13:32:00.003-04:00

Keith LOVES Spaghetti! NONE of it will hit the floor because he eats every bite. He did get alot on his face, and nearly dyed his tub water orange after this-- but it definitely was priceless to see him gobble it up.

Airway Update 7/9/08

2008-07-09T10:56:00.002-04:00

We had to be at the hospital at 6:15 am today, which meant we had to get up at 4:30. Shew! We are tired!

The airway dilation went WELL today! Keith's airway has stayed open! Thank God!

After today's dilation, it is now 60% blocked. The doc wants to go back in atleast one more time (6-8 weeks from now) and do it again. He is trying to get the airway to about a 40% blockage.

Keith will most likely have to have the major airway reconstruction (looking at September for that to happen) but at this point the doc is for sure that it will NOT be as extensive as originally planned. It is still a complicated procedure, but instead of going in and graphing the skin, and putting stints in on both sides, he is looking at maybe only doing the front of the airway.

However, miracles DO happen--- and in 6-8 weeks we will know more. There is a 20% chance that he MAY NOT have to have the surgury at all. Of course, I'm praying for that--- but taking it all little by little.

Our Day At Miami Beach

2008-06-18T14:49:00.003-04:00

It was a pretty fun day! I managed to keep Keith from getting sunburn. He Loved getting in the water and watching everyone play. Hearing the waves and the ocean was so calming. I didn't get to get any pics of him in the water because we had cheesy batteries :( But we did get a few of him chillin on the beach :)

Chuck-E-Cheese

2008-06-18T14:11:00.004-04:00

Chuck-e-Cheese was SOOO much fun! Keith LOVED it. He rode everything, and most things more than once. We also met another little boy, also 2, with a trach. It was so neat to see another kid out and about with similiar issues as Keith has.

Birthday Party Pics

2008-06-18T14:00:00.005-04:00

Here are some of Keith's bday party pics. I know they are late getting up here, but we have been really busy! I have a lot of events to post about!

Keith had fun while Aunt Brandy was chasing him for pics

The kids actually sat together for a pic, but Keith HATED the grass!

Keith didn't want cake!

But Darcy Did.....

He was really pooped out after everything was done :)

Birthday Party & Second Year Video

2008-06-04T08:04:00.002-04:00

We had a great 2nd birthday party for Keith! Aunt Brandy has the pictures on her (awesome) camera, so we won't be able to post those until later, possibly tomorrow.

The kids played playdoh, and had a water balloon fight. I think Darcy LOVED the water balloons, but Keith only cried. He also cried when his cake came out because he was so tired. Cade helped him blow out his candle.

It was a great day and I'm so glad that the kids had fun!

Here is Keith's second year video:

Surgury Update

2008-05-29T15:16:00.008-04:00

His procedure went VERY well.
The look on the docs face when he came out to the waiting room, pretty much told me all. He was very positive! Keith's airway went from almost a 100% blockage, to now about 70% blocked. That's a fantastic jump! The doctor didn't even think it would be THAT good from the dilation!
Now, our only problem is having it stick! There is a 50% chance that the airway will just close itself back up. If that happens, Keith will have to have the major airway construction using rib cartilage, stint and long extensive surgury.
In 6 weeks we go back to repeat this procedure. If the airway is still open, then this same procedure will be repeated. If not, then I think the plan is to go ahead with the complex surgury right then.
The goal is to either clear him enough to avoid surgury, or make the surgury less extensive.

Link to Pre-op bronch cam: http://img.photobucket.com/albums/v231/alskjs/Keith%20Jr/52908presurg.jpg

Link to Post-op bronch cam:
http://img.photobucket.com/albums/v231/alskjs/Keith%20Jr/52908postsurg.jpg

Here are pics from today:

So far so good. Happy and content. It's going to be a good day!

Starting to get antsy. Wondering what stuff is....(his hand is like a 1/2 inch from pulling the COLD BLUE button)

I promise I'm not doing anything mommy.

See, I'm being good!

Can I look at the papers? Can i rip the papers?

But please can I play with the papers?

Would someone please sedate this boy? Mommy is having a hard time keeping me out of things

After the coctail.... he kept laughing at nothing.

Recovery:

Trying to outsmart an almost 2 year old

2008-05-28T17:27:00.004-04:00

Well, Keith will NOT stop picking his diaper. About 6 months ago we could NOT get him to stop eating diaper fuzzies, or carpet fuzzies or fuzzies off of his blankets. He has seemed to stop eating the fuzzies for the most part, now we have a new and BIGGER problem.
He is constantly picking his diaper! I've resorted to only put one piece clothing on him (onesies, rompers, jumpers, sleepers). Two piece clothing he just takes off.
For a while, the one pieces were working-- he couldn't dig in to his scrumptious diaper. Then I found that the dryer I kept him, the less he did it. I thougth maybe he was just "knowing" when he had to pee or something.
Now, he has outsmarted us--- he NOW learned that he can still reach udner the one piece outfit and rip out hunks, chunks, and just huge pieces of diaper cotton. It doesn't matter if it's dry or wet.
I'm constantly picking up diaper. I'm changing more destroyed diapers then dirty diapers.
I'm annoyed and frusturated. I find diaper EVERYWHERE!
I would potty train him, but he already has issues with understanding so much other stuff, that I think potty training would just frusturate ME more. He doesn't communicate well (not even for a drink /food/ or nothing) so, I really don't know how he would communicate with us about using the potty.....
I'm trying a new 'punishment' for him when he picks his diaper. I'm not trying to be cruel--- but this is the only solution I have for now before I resort to using cloth diapers......
Check it out...
Sock hands....equals no butt picking!

Lesson hopefully learned: If you are going to pick your butt, don't leave crumbs on the floor.

Too bad he thinks this new game is fun......

Super independent toddler

2008-05-15T22:48:00.003-04:00

I don't have a baby anymore. I have a toddler. He walks, and can now climb his slide all by himself. He knows what he wants to play with when he wants to play with it.
Aside from feeding him, and changing his diaper-- that's all that's left of my 'baby'.
My baby is a big boy.

I'm so proud of my 'not so' little guy.

The other day, I said keith can mommy have a hug-- and he gave me a hug! It was amazing!

He's learning about humor and what is funny and what is not.
He is learning that he can now throw his body and have a temper tantrum.
He is learning that he LOVES noodles more than cheerios.

I'm learning that I love my boy more than anything in this world!

He is now almost 26 pounds (according to our bathroom scale). We didn't make it to playgroup last Monday because we all slept in and it was really nasty raining.

Anyway, here's a video of him playing outside. Promise you won't shed a tear, because I do every time I watch my big boy.

Our First Playgroup!

2008-05-06T22:29:00.003-04:00

Yesterday Keith had his first Infants and Toddlers playgroup. He had so much fun! He was running all over the place, they had so many things for him to do, he didn't know what to do first! I think his favorite was the parachute ride!

He played with the big stacking boxes, all of the balls and trucks, and loved the bubble machine!

I think we are going to go back next Monday.

By the way, I'm planning his first birthday party, and I think it's going to be a lot of fun!

Walk! Walk! Walk!

2008-05-06T22:19:00.003-04:00

This is just a sample video for now, more to come.

I'm going to try to get a picture of him climbing up his slide, and going down it all by himself!

Big Boy ENT Update

2008-05-01T22:49:00.002-04:00

We have sorta good news!
As I posted before, Keith was supposed to have reconstructive airway surgury on the 29th of this month. The doctors called me last week and asked me to come in this past Wednesday to discuss a different procedure that they want to try first before doing an invasive one.
Anyway, the procedure is still going to be done on the same day, and it's basically a dilation. They will put a ballon down his airway and "stretch" it to compress the scar tissue that he has. The doc said normally if a kid has a 70% airway block, the ballon will help ALOT to where they might not even need invasive airway construction. Keith is 90+% blocked, so the doctor isn't too optimistic that it will keep him from having airway surgury, but it may open it up enough to where maybe only one side needs to be done, instead of both.
However, the doc did say that miracles CAN happen-- and maybe the surgury will open it enough to where he WONT have to have surgury. Again, he is not very optimistic-- but heck if there is a chance, I'm all for it!
They will do the balloon procedure 2 times. Once on May 29th, and again 6 weeks later. They will know on the 2nd attempt if the first procedure helped any. If not, they may go ahead and do airway surgury right then, and not dilate him again. If it did help, they will proceed with the dilation.
Once both dilations are done (if a 2nd one is done), then Keith will either be opened up enough to where he wont need surgury, or he will be on the road to airway construction, still possibly this summer.
I'm praying that both procedures pay off! If he doesn't have to have complicated airway surgury, that will be a blessing!
The other good news is, He will be able to come home on May 29th after the dilation, so he will be home for his 2nd birthday, and not in ICU!

We will always Remember Baby Ike

2008-04-26T21:38:00.004-04:00

Today, Keith and I went to the Fifth Annual Memorial Service at the University of MD, to honor Eric's uncle (amoung other children that have passed).
Anyway, while there we ran into one of Keith's NICU and Pediatric Hospital room mates.
We found out that Baby Ike passed away on 8/26/07. I'm so terribly sad, and at a loss for words.
two days ago, 4/24, would have been Ike's 2nd birthday.
Me and Baby Ike's mom went thru a lot together during our NICU, and ped hospital stay. The ups and downs, the day and night phone calls, the wondering if our babies were going to make it.
Unfortunately, Ike had something happen to him with his trach, I suppose and he did not make it.
His mom and family will be in my prayers. They are 8 months into their grief, and I'm being floored with the news today, and I feel so bad for them.
I didn't get to share in Ike's death, but I feel like I shared in a big part of his life. The constant hospital visits that me and his mother had to go thru for our sons. The roller coaster ride.
The surguries that both boys had. She supported me and helped me thru tough times with Keith, even though she HERSELF was having hard times as well.

Today, I make a promise to myself in memory of baby Ike to make sure I take 100% good care of Keith. Not that, I don't --- but today's news showed me that I cannot take Keith's life for granted. It's too precious, and could be gone in a blink of an eye.

Keith and I will always remember Baby Ike, and his mom.

We will pray for you.

WALK! WALK! WALK!

2008-04-12T17:52:00.003-04:00

Not only am I walking, but as I do it I'm now saying "walk, walk, walk"

Mommy and Mr Kevin are getting a big kick out of it!

I walked so much last night that I was sweating! It was really fun!

I went to my doctors on Friday for a weight check, and I'm 24lbs 11 ounces.

Fun times

2008-03-31T22:06:00.003-04:00

I love putting a smile on mommy's face. With just a little smile I give her, I see a big smile from her in return. I love when she kisses my neck, and calls me her little buddy.

I'm doing well, and finally picking up a little bit of weight. I had lost about a pound over the course of 2 weeks. I had a stomach bug, and also a bad cold for a while, but seem to be better now.

Spring has sprung, and I think I'm going to make it without getting any kind of major bugs!

My surgury for my throat is scheduled for May 29th, so about 8 weeks away. I have alot of preperations to do until then, but really mommy just wants me to stay a baby for a while longer and live life to the fullest.

Milestones for March:

I can drink from a straw!

I have walked a few times (more than 10 steps) on my own!

I can say a few new words now, but you really have to listen to understand what I mean.

I can pass out anywhere

2008-02-21T22:47:00.003-05:00

When a boy gets tired... he gets tired!

Long time no update

2008-02-21T22:35:00.003-05:00

Let's see what all has happened over the last few weeks.....

I can eat!! I eat just about everything and anything that I get my hands on, including blanket fuzzies-- which mommy says is nasty. I'm not eating too much breaded stuff, but lots of crunchy stuff like cheerios, cheese puffs, gold fish, little mini cookies, and sometimes mom throws in a fun fruit or two.

I love yogurt and my morning cereal!

I've stopped drinking bottles and fluid all together-- so now mom has to pump all my liquid at night until i can figure out how to use that crazy thing mom calls a sippy cup. I think it's stupid.

I've been back to all my doctors to follow up and so far everyone of them is pleased.

My Gi doctor wants me to be atleast 26 pounds before surgery in May, so mom is pushing hard for that. I'm a little over 24 now, so I should get there.

My Lung doctor is watching me closely and making sure my lungs stay good so that after the surgery it will be easier to have my trach removed.

My ENT Doctor is so proud of me and is even making me spokes model for the ENT homepage at Univ of MD. Mom keeps searching for when that is going to happen so she can share the link, but so far she hasn't seen it online.

I'm still standing up and holding on to things to walk. I scoot the fastest, so that is my first choice in getting around. And boy am I fast! Mom really has to chase me when i get down on the floor.

I love to play ball! Mom throws the ball to me while I"m in my play area, and I throw it back. I have a great throw and I throw it to her every time!!

I give hugs now and I'm really starting to understand directions such as lay down, sit down, and I'm doing really good at getting my clothes on with mom's help.

Mommy is so proud of me and I she told me I was her best friend.

I should have my dafo (foot supports) in about 2 weeks which will help my ankles get the support they need.

I'm learning alot and sooo busy these days. Mommy will try to post some pics of me soon!

Ooops Mommy Forgot!

2008-01-23T14:54:00.000-05:00

Mommy was about to send Aunt Mary a picture of me with Santa and she realized that it was never on my blog!

Way to go mommy!

So here is me and Santa

A mini update

2008-01-14T04:41:00.000-05:00

I went back to the ENT doctor on January 8th. The airway specialist and the ENT doctor both took a quick look again at my airway with the bronch, and both agreed that my airway is very much blocked, but my vocal chords do indeed work. YAY!

I have to go back again for another laragnoscopy on 3/13, and my throat sugery is scheduled for the first week of May.

Mommy has been feeding me just about anything that I will tolerate and I'm really loving food! Mommy is learning that as long as I am having a good day and feeling well, I will eat. We have tried lots of new things!

I'm also learning to eat blanket fuzzies, and mommy tries to tell me that I shouldn't eat the fuzz off of my afghan, but I don't listen.

Speaking of not listening, mommy also says that I'm hitting the terrible two's already. Yeah, I'm a rebel in disguise!

I've got about 12 teeth, and a few more about to pop through. I have Molars now!!

I guess that's about it, more updates soon!

What Christmas is all about

2007-12-24T10:02:00.000-05:00

I spent the Saturday before Christmas with my bestest friends Cade and Darcy. Mommy said that spending time with friends and family is what makes Christmas and it's what it's all about.

I love my friends!

Surgury Update

2007-12-09T23:19:00.000-05:00

My scope was on December 6th. The scope itself went well, but to everyone's surprise my throat is 90 % (yes mommy said NINETY) blocked. I have to have a new throat put in, and it's going to be a complex, invasive process. In March, or when the weather breaks-- the doctors will start the processes. Once that is all done (a 3-4 month process of procedures) then I should be able to get my trach out. Until then, I'm stuck with this.

Mommy is sad, but grateful that they did the procedure to check me out because without it, I would have had the trach removed and would have only been breathing out of a 10% airway and that would not have worked.

According to Thursday's weight, I now weight 21 and a half pounds, which is a loss. I have not had to use my feeding pump because I've been eating well, so mommy is not sure why I lost. She will keep an eye on it.

Here is a picture of me napping before we went on vacation that mommy forgot to post.

Ed Debevics

2007-12-09T23:15:00.002-05:00

Also on our Chicago trip, we went to a place called Ed Debevics. It was so fun and i got to eat part of mommy's milkshake!

First Fry

2007-11-26T23:09:00.001-05:00

Mommy and Mr. Kevin took me to Illinois for the Thanksgiving holiday, and while there I started eating whole food! How awesome is that?

Mommy gave me a french fry when we went to Chicago, and I ate it! Mommy thought I was going to throw it on the ground like I always do when she gives me food, but I fooled her!

Take a look:

First Haircut

2007-11-13T08:47:00.002-05:00

Finally mommy and Mr. Kev took me to get my haircut. I didn't like getting it cut. Mr. Kev had to hold me down a lot and mommy had to hold my head still. The buzzer was the worst! I'm such a big boy now though.

Keith in 'el natural

2007-10-30T20:37:00.000-04:00

Laid Back Keith Pics

2007-10-30T20:30:00.000-04:00

Fall Pictures

2007-10-30T20:24:00.000-04:00

More pics

2007-10-30T20:19:00.000-04:00

More Pictures

2007-10-30T20:06:00.000-04:00

Sorry for the delay, but here are more pictures of me!

A lot of fun on Sunday!

2007-10-09T00:29:00.000-04:00

mommy and I went to Aunt Brandy's on Sunday and she was able to take a lot of pics of us. (like 100 pictures!!). Mommy and Aunt Brandy had a hard time deciding which ones are their faves. Mommy is going to post a little bit of the pictures each day.
Here are some!

Here are some!

My puppy is home now!

2007-09-20T10:24:00.001-04:00

Mommy says that she loves seeing how much she makes me smile.

Playtown at the mall

2007-09-16T00:21:00.000-04:00

We have alot of fun at playtown when we meet up with Cade, Darcy, and Aunt Brandy. Mommy and Aunt Brandy always drink Starbucks and we always get to play. The last couple times at the mall, I've been able to play for real!

Crazy Hair!

2007-09-16T00:18:00.000-04:00

Mommy said that she will show my girlfriend's this pic one day :)

Playing on my playground

2007-09-16T00:11:00.000-04:00

How fun it is to lay on my own play ground!!

Belated Party Pics #2

2007-09-15T23:54:00.000-04:00

Here are my cake pics! I HATED eating the cake!

Belated Party Pics Post #1

2007-09-15T23:40:00.000-04:00

There are a ton of party pics that we want to share, so mommy is going to divide them up in a few blogs.
Here are some to get us started!

Pop-pop was talking to me about my birthday and how much it means to be a big one year old!

Mommy put these ridiculous glasses on me, while Aunt Brandy snapped a picture.

I thought it was so much fun watching everyone at the party!

Here I am having a good time again, chillin with Mr. Tom (that's his arm in the pic)

Pictures are coming!

2007-09-15T23:39:00.000-04:00

Mommy got TONS of film developed from my party, 4th of July, and a bunch of other stuff.

My blogs going to be all caught up!

Dadddhhhhh!

2007-08-31T12:40:00.000-04:00

I said something on Friday that shocked everyone, including myself! We were at pop-pop's house and daddy had just came over after work. Mommy and daddy were talking about chicken wings and suddenly I said dadddhhhh. I shocked myself and mommy and daddy's chin dropped!
Mommy said she didn't know we had a little german on our hands.

A full month and no posts!

2007-08-22T14:21:00.000-04:00

Mommy said to tell you she is really sorry for not getting anu updates on my blog! She still hasn't gotten the pictures developed, and nothing much has changed.

I did go to the eye doctors a couple weeks ago and my eyes are 100% fine at the moment! That's good news!

I went to the lung doctor last week and they were happy with my progress! They told mommy that as long as I was doing well during the day, I could be off of the vent and use it at night.
I have to see the ENT doctor before I go back to the lung doctor in December. If all is well with that, and if I don't get sick during the winter then my trach may come out in the spring!

As of last week I weighed 21 pounds 12 ounces!

Watermelon Video

2007-07-27T21:09:00.000-04:00

WaterMelon is Yummy, and fun to play with!

2007-07-27T20:50:00.000-04:00

At first, I wasn't about to try the watermelon. This is my "Don't even think about giving me a bite of that" face. (Mommy says this reminds her of "What you talking about Willis?")

So I gave in and tried the watermelon. It's not that bad!

I had fun playing with it!

I liked eating it too!

Suddenly, I noticed something in the sky. Mommy said it was a plane! I've never seen one of those before.

July 23rd- Mickey Button Placed

2007-07-23T15:16:00.000-04:00

Today Mommy and I had to be at the hospital by 9 am. We get there and get our paperwork that is needed for the procedure, and then go and sit in wait in the GI doctor's office. We get called back after a while, and the doctor and nursing assistant try to make mommy leave the room, but she refused. It's a good thing too, because I really wanted her with me.
The doctor literally tears out my old G-tube and replaced it with this small mickey button. Man did that hurt! I cried and cried! I was glad mommy was there.
After that, we had to go get an x-ray with barium to make sure the new button was in place. It worked fine. I ended up throwing up all of the barium on mommy's shirt.
We had to go back to the GI office after that for mommy to learn some things about my new equipment.
Finally, we were able to leave. We came home, mommy fed me and then I took a much needed nap.

As of today, I weigh 20lbs 12ounces!

Suddenly sitting up (7/1/07)

2007-07-19T02:14:00.000-04:00

So, on 6/30 we visited Aunt Brandy and I couldn't sit up to play with the kids. Even for the pictures, mommy and Aunt Brandy literally "planted" my hiney in a flower pot (see previous post). Suddenly, on July 1 mommy sat me with my toys, and badda-bing I've been sitting up ever since! Mommy still puts the pillows around me, just in case...

So I figured out the sitting up thing... now if I can just figure out the right end of the bottle to drink from....

June 30 Pictures (Our Visit to Aunt Brandy's)

2007-07-19T01:26:00.000-04:00

As you can see, I'm really having a good time at Aunt Brandy's House! She snapped this shot of me, chilling in my stroller :)

Darcy was posing for the camera with a flower, and somehow I ended up with the daisy in my ear too. I don't think I like it too much.

Totally posing for the camera!

This is me sitting on Aunt Brandy's Welcome Bridge.

This is me with my best bud Cade, and "girlfriend" Darcy!

So do you wonder how you make a baby sit up for a picture when he can't sit up? Well, you "plant" his hiney in the flower pot!!

Yep, the flower pot works!

Ironically, On June 30, I could not sit up unassisted-- hence the use of the flower pot. However, on July 1, I magically started sitting up alone all by myself! I think the flower pot practice must have helped!

July 16th Update

2007-07-16T12:33:00.000-04:00

Mommy has been so busy on her money making blog that she has been forgetting to post updates about me!

As of July 1, I'm able to sit up all by myself!
On July 14th, I got a swingset for the back deck. Mommy will have pictures soon!

As of July 15th, I sprouted 2 new teeth, which gives me a total of 8!

Mom has some pics on a cd from Aunt Brandy that she will upload this week.

6/28 Doc Appointments and Updates

2007-07-02T01:28:00.000-04:00

Mommy and I have neglected to tell you about my recent doctor appointments and changes. I went to the doctor's last Wednesday to see my stomach and lung doctor. Both docs were pleased about my progress.
My stomach doc said that I'm still gaining weight fairly on the fast side. However, since I just came off of formula and now taking Pediasure (also a new change), she kept all of my amounts the same and will see how I do at my next visit. In Mid-July I will need a procedure on my G-tube. I will get a new tube called a mickey button. The docs said I can either be asleep or awake for the procedure, and mommy can choose. I think mommy is going to have me awake because most kids get it done this way.
My lung doctor was also pleased with my progress. She told mommy to start taking me off of the vent more during the day. So far since last Wednesday I have been off of the vent alot, and am doing just fine! The lung doc also was considering taking me off of my lung meds, but will wait to see me one more time before making that decision. She also told us that she is leaving the practice, so I'll need to see someone else at her office next time. This makes me and mommy kind of sad since this doctor knows me so well and mommy really likes her.
My current weight is 20lbs 3.8oz. I'm a cow!

I also have 6 teeth now!

As of today July 1, I'm able to sit up all by myself too! I'm so proud of myself!

PS Mom will have birthday party pics soon. Aunt Brandy also has a ton of pics on her camera that mommy will get from her one day. (Aunt Brandy can you burn a cd for mommy??)

6/30 Spent the day at Aunt Brandy's!

2007-07-01T13:41:00.000-04:00

Me and mommy took a trip to Aunt Brandy's house yestereday. I played with Cade and Darcy and we had so much fun! I was sitting up playing with a box with beads on it and I loved it. We all had such a good time. We played outside a lot too.

This morning mommy sat me up again to see if I could do it today, and I have been sitting up for hours on my own! I can finally do it!! Mommy is so proud of me, and I'm so proud of myself!

Here is a picture from yesterday with Cade and Darcy on the bridge. Mommy has more pictures, but haven't been developed yet.

Funny Glasses

2007-06-20T04:26:00.001-04:00

Here is a pic of me at my party wearing funny glasses with Darcy.

Keith's First Year Video Montage

2007-06-14T17:06:00.000-04:00

Mommy finally got my birthday video up!

Keith's First Year

Add to My Profile | More Videos

Not da Mama!!

2007-06-12T00:17:00.000-04:00

I have a twin, who would have known!

Cade's Birthday Party

2007-06-12T00:13:00.000-04:00

I had a lot of fun at Cade's Birthday Party. Aunt Brandy took some shots of me there. You can tell how much fun I had!!

Pictures that Aunt Brandy Took

2007-06-12T00:10:00.000-04:00

Aunt Brandy came over to our house last Monday and took some great shots of me. Check them out!

Overview of the Year

2007-06-07T09:03:00.000-04:00

I was born on June 7th, 2006 at 5:50 pm. Mommy had to have an emergency c-section due to a prolapsed umbilical cord, and other complications. Mommy was asleep when I was born.
After my delivery, I was taken to the NICU and had apgar scores of 3, and then 7.
Grandmom C, and Daddy were the first to see me a few hours after I was born, and then Grandpa W. Mommy didn't get to see me until the next day.

On June 19th, I had heart surgery to close a valve and fix my O2 concentration. A permanent clip was inserted on my heart.

Thru June 30th-July 5th I was really sick with an infection called MRSA, and things didn't look good for me, but I got better thanks to tons of prayers and good doctors.

July 13th, 2006- Mommy held me for the first time. It was the best feeling ever!

September 1, 2006- My trach was inserted

September 20th, 2006- I graduated from the NICU and was sent to Mt Washington Hospital

December 14th, 2006- I came HOME!!!

January 5th, 2007- I got my 1st tooth!

February 7th, 2007- I started daycare

February 14th-17th- admitted to hospital

March 27th- May 1st- admitted to hospital, G-tube inserted

May 1st- now-- Mommy spends every day with me now and it's so much fun! I like it this way and I hope it never changes!

Happy Birthday to Me!!

2007-06-07T08:54:00.000-04:00

I am one years old today! I'm such a big boy and growing every day!

I'm not sure what mommy has planned for me today, but my party is on June 16th, and I hope to have a lot of fun!

I've also been back off oxygen since last Sunday, and doing great!

5/31 Update- O2 is back :(

2007-05-31T23:46:00.001-04:00

Mommy and I were supposed to spend the day at Aunt Brandy's house today. It was going to be a fun time!
But... we never made it.
Mommy didn't sleep but only a little last night because I kept desatting. At 5 am this morning she ended up putting me on oxygen, which instantly helped.
Mom called the doctor at 8:30 am and she said it sounded like little areas of my lung may be collapsed and that I shouldn't come off of the vent for a bit. Mom is going to try to wean the O2 down some tomorrow if I can tolerate it.
The doc mentioned at my last visit that if I wasn't ready to come off of the vent for a few hours a day, something like this may happen.
If for some reason this is not a support issue, then it could be something viral that I'm catching. So far mom says I don't have a fever.

P.S. I really hate that thermometer!

My Stepping Stone 2007

2007-05-29T09:13:00.000-04:00

Here is my one year stepping stone that Mommy and I made. It took mommy several times to help me make this cause I kept curling up my toes in the cement. Finally, we settled for this one. We think it turned out good!

I can hold my own bottle, when I wanna

2007-05-26T22:28:00.001-04:00

Yeah, I wear Hanes 5/25

2007-05-26T22:17:00.001-04:00

Finally a good picture with Mommy!

2007-05-25T18:11:00.000-04:00

Mommy and Daddy were waiting for grandmom to come over and the power went out. While we were waiting, mommy got dressed and daddy got a good picture of us, finally!

Trying to get a picture with mommy

2007-05-22T14:39:00.001-04:00

Mommy and me had a hard time getting a picture together the other day. It started like this....

and then mommy cut off my head.....

and then I wasn't paying attention....

and then I'm not sure what happened.....

and in this one I wanted to make sure mommy was smiling....

and by now mommy and I are both laughing so hard....

and it only got worse.....

This would have been a good picture.....

We took 45 pictures, and only ended up with 2 good (not perfect) shots....

Update 5/16/07

2007-05-16T18:14:00.000-04:00

I'm a pig. Oink Oink! I now weigh 18 pounds 6 ounces. Mommy took me to the University today for a pulmonologist and tummy doctor visit. The pulmonogist was very pleased with my progress and told mommy to start weaning me off of the vent during the day up to 4 hours. In 6 weeks I go back to her again and she will see if 4 hours off a day is still okay, and then we can wean more.
The tummy doctor said for mommy to cut back on the formula now because i'm TOO fat and growing too quickly. My height to weight ratio is not equal anymore, so she told mommy a new rate to feed me at night in my G-tube.

Also today mommy looked in my mouth to check my new top tooth-- and to her surprise 2 more front upper teeth are poking their way through!

It looks like I'll have 5 teeth before I'm one!

I'm not fat, I'm big boned! (5/9)

2007-05-09T20:01:00.000-04:00

Today I had a follow up appointment with my pediatrician from being discharged from the hospital. Dr. Shaikh was soooo impressed with me and how chubby I have gotten. She listened to my lungs and said that was the best she ever heard me breathe! She also told mommy that I needed to get my 1-yr shots on June 11th. Mommy told her that last night was a rough night for me, but I seem to be okay. She told mommy to keep an eye on me. I'll try to be good tonight.

My weight today was 17lbs 3.5 ounces! I weighed 15 pounds when I left he hospital last week, and on admission at the hospital, just 12 lbs.

Mommy said that she couldn't believe that!

Mommy said I was turning into Cartman!

An after breakfast nap

2007-05-04T13:36:00.000-04:00

So mom-mom and poppy got me a super cool porta-crib for the living room instead of my pack-n-play. I've been staying in the living room with mommy since my bedroom is way too small for all of my equipment. Well, I've already learned how to get comfy!

This is the life :) (5/4)

2007-05-04T13:33:00.000-04:00

Just me and my boppy. What a life!

Easter Basket Video

2007-05-04T13:27:00.000-04:00

Easter was a little late this year (5/3)

2007-05-04T13:01:00.000-04:00

Yesterday we decided to have Easter. I gave Keith his basket of stuff all he did was smile at it! He wouldn't reach in the basket for anything, even though I kept trying to coax him to do so. When I took everything out of the basket, he than began to care about the toys inside.

Adjusting to home again (5/4/07)

2007-05-04T12:51:00.000-04:00

We are finally home again! Keith was discharged on May 2 and is now happy at home. The hospital insisted Keith return home in an ambulance, which was disappointing to me since it took all day waiting for it to arrive. When the chariot finally arrived, and Keith realized something was going on-- he was all smiles!
When we were home, I layed him in his own bed-- and he was so happy! He played with his toys the rest of the day, checking each one out. He slept the whole night last night. I think he was thinking "finally a full night's rest without disruption!".
We are getting used to having him plugged up to the ventilator 24/7, but hoping that when we return to the lung doc on the 16th, she will start to wean him off.
We are building a routine at home and trying to schedule feedings and play time to fit our day. So far we haven't had a static schedule, but things are going well.
I know he has gotten bigger since most of his clothes that he could wear before admitted to the hospital are now way too small.
I have a ton of pictures and videos to post from the last few days, so I'll try to get busy with that today :)

Update 4/28 Chunka! Chunka!

2007-04-28T23:20:00.000-04:00

Little man is now 15 lbs .02 ounces as of last night. I'm sure he grew more tonight, but I missed the weight.
He has been so happy and active, and just full of smiles.
He has been on the home-vent for over 48 hours so the hospital test on that has been successful. We have the home-feeding pump here next to use, but really that is not a big deal.
They did an arterial blood gas on him today just to make sure his oxygen sats were good, and that was also a-go. So, it looks like we are really on our road to home. The pulmonologist wanted to see weight gain before she decided to discharge, but I think based on the numbers she should let us go.
He is on room air still, which is a plus. Now we need to wean him off of the vent, which hopefully will be cut back to nights soon. The vent is not really that large, and it is portable, so I don't see that holding us up too much.
Hopefully my next update will say that we are home :)

Update 4/26/07

2007-04-26T02:51:00.000-04:00

Here is the latest Keith run down.....
-G-tube surgery went well, and is working as of early Wednesday morning
-Vent settings are back to what they were prior to surgery
-Home vent received at hospital, still waiting on feeding pump for home
-Won't come home until atleast Tuesday next week
-Current weight 14 lbs 9 ounces (was 12lbs 10 ounces on admission)

Thanks to Tara for getting my cell phone picture online for all to see.

The picture is from Wednesday night, he is looking great!

Update 4/17

2007-04-17T13:02:00.000-04:00

Keith had is PH probe study from yesterday morning until this morning and we are currently waiting the results. This test will show how much, if any he is refluxing. If he is refluxing badly, then they will put a nissen in when they do the g-tube surgery.

This morning he also had a modified barium swallow done, and also a GI anatomy study done and passed both. The swallow study was done to make sure he wasn't aspirating, since the docs thought they were. It appears he is not, so now I'm waiting to see if the docs will clear him to eat by mouth either after the g-tube surgery or whenever. Not sure when we will get clearance, but the test results were pretty good. Hopefully they will allow him to eat regularly and then use the g-tube for supplemental calories.

Right now I think the g-tube surgery is tentativly scheduled for tomorrow. I will try to make it back online this evening to verify.

After his surgery he will be in the actual PICU so it might be a bit before I can update.

So as I'm typing this message, the PH probe doctor came in and HE PASSED the ph probe test and does not need the nissen surgery--- that is a more difficult procedure than the g-tube so this is good news.

The surgery according to this doc should be tomrrow or Thursday. Again, I'll keep you updated.

Now I just need clearance on him eating by mouth. Hopefully that will not be the hiccup.

Easter Pic with the kids :)

2007-04-15T00:57:00.000-04:00

Easter Pic with Cade and Darcy that Brandy took with her camera. I just snagged it off of her blog ;)

Update 4/12/07

2007-04-12T16:37:00.000-04:00

KJ seems to be doing much better today. He is scheduled to have the PH Probe done on Monday, and probably g-tube surgery next week, with the possible nissen. From that, we should have 3-5 days recovery period, and then on our way home. I really hope it works out that way.
Last night I was able to take the test for that call center place and also I did the phone interview. I'm waiting to hear back from them to see if I did okay on the interview. If so then I have to take the courses and 2 more tests. HOpefully all will be okay with that.

KJ's weight last night was 14lbs 3 ounces. He is getting chunky!!

They removed the ng tube from his nose today, so he still has the J-tube feeding his belly, but the other tube that was relieving belly gas is gone.
Yesterday his daycare nurses and teachers stopped by to see them. They brought him a card, toy, bear and blanket. That was really nice of them to do.

Keith Update 4/7/07

2007-04-07T00:08:00.000-04:00

To family and Friends here is a quick update on little keith since I can't seem to contact everyone and update all at once. I'll be trying to post updates here as much as possible until he is better and at home.

They still have Keith on the vent for pressure support and he is still on 40% o2 which I think can be weaned down cause he is doing well. He came in the hosp weighing 12lbs 10 ounces and is now 13 lbs 8 ounces so weight wise he is doing well by getting fed with the tube. They are not planning on making any changes over the weekend. Next week they plan to do a PH probe to see how bad his reflux really is. From that they might do a nissen and they ARE still going to do a G-tube because he really needs nutrition help regardless if he is asprirating/refluxing or not (whcih may have caused the pneumonia in his lungs). I think the docs do now plan to do the G-tube on this admission. They are also not sure if I will need a vent at home for atleast at night to help him rest and not work as hard. I'm hoping that he will be able to eat regular during the day and have supplemental feeding at night with the g-tube support. Time will tell. It's a slow process and we are going on 2 weeks of being here. I have been home 3 short times in those 2 weeks and I'm not sure when the end of this hospital stay will be. My hope is that he is not aspirating or refluxing, that maybe the food in his lungs was a one time thing. My opinion is that it was a one time thing since he has been bottle feeding for quite some time and has not had issues. If it's reflux atleast a nissen can help.
My understanding of a nissen is basically the stomach is surgically wrapped tight around the esophogas to prevent vomit coming up and going to the lungs.
Things are so much like a puzzle right now.
Keith is doing much better though with the vent support. he was very playful today and I think he is teething on top of everything else.
He has ran out of IV locations so they are now using his scalp veins for IV placment. This is his 3rd IV in his head today. Hopefully this one will hold up a while. He looks silly with a big old thing on his head and a bandage around it to hold it in place. He smiled some today too so i think he really is feeling better.

3/24/07 I seen the Easter Bunny!

2007-03-25T03:23:00.000-04:00

My first trip to the Easter bunny was a blast! Mommy took me with Aunt Brandy, Uncle Bill and Cade and Darcy. Aunt Brandy got a picture of us 3 kids together, and mommy purchased a package of me.

I really liked the bunny and I was smiling!

Mommy's Gift 3/18/07

2007-03-18T23:14:00.000-04:00

Mommy's birthday is coming up, and I got her a gift.
it is me!!

We had fun playing with the box!

Waiting patiently for toast in my high chair

2007-03-18T23:08:00.000-04:00

Uncle Brian's Mom, Janice, got me a really cool high chair. Today was the first day I was big enough to use it. Look at me waiting patiently for toast, and eating it!

Pics of me swinging

2007-03-18T23:03:00.000-04:00

Swinging is so fun! Don't I look like a big boy?

I love to swing! 3/11/07

2007-03-18T22:20:00.001-04:00

Here is a video of me swinging! I love it!

More Birthday Party Pics

2007-03-18T22:12:00.000-04:00

Here are more photos from Darcy's birthday party!

Me getting ready for the party. (This outfit will probably also be my easter outfit mommy says)

The little poodles

2007-03-09T21:14:00.000-05:00

This picture was from Cousin Darcy's poodle birthday party. As you can see we had a lot of fun! Mommy stole this picture from Aunt Brandy's blog. We have more pics on mommy's camera too, but here is one for now ;)

ENT Visit and Update 3/5/07

2007-03-05T21:57:00.000-05:00

I'm slowly recovering from this respiratory bug that I cought. It seems that I'm less oxygen dependent now too, so hopefully when I see the pulmonolgist on Wednesday she discontinues the oxygen order.

Since Friday, I have had barely any appetite, and I keep throwing up a lot of mucus. Mom called the doctor today to make sure this was okay, and the doctor told mom to keep an eye on me and make an appointment if things don't change soon.

I went to see my ENT doctor today. They attempted to view my airway with a camera down my nose and trach, but because I had so much mucus in there, he really couldn't see too much. The doctor wants to see me back in one to 2 months. Mom already made an appointment for 4/19. She said she wants to get it all over with and have me trachless. The doctor also thinks that it would be best that he view my airway under anesthesia to make sure everything is okay and tha the gets a really good look. Mom was said about that, but she said that it would probably be safer that way.

Other than all of that, I'm very happy and still smiling.

I went to a party! 3/4/07

2007-03-05T21:53:00.000-05:00

I went to my first birthday party ever on Sunday! It was cousin Darcy's first birthday party. it was so fun! IT was a poodle party, and Aunt Brandy even made me a poodle hat!
Mom and Aunt Brandy took pics of me wearing the hat, and mom will put them on the blog really soon!

Another Hospital Visit 2/25 Update

2007-02-25T17:20:00.000-05:00

I was discharged from the hospital yesterday, after being admitted again on Thursday.
Tuesday I was taken by EMS after going back to daycare because they coudln't keep my oxygen levels up. Once we were at the hospital though, everything was fine and they sent me and mommy home. On Wednesday momy came me home from daycare because she wanted to make sure I was okay. Once night fell, my oxygen levels dropped once again so mom put me on oxygen. She thought maybe I just needed a break, so she let me sleep with the oxygen until Thursday morning. Once Thursday morning came, I still couldn't keep my saturations up without the oxygen. She and daddy decided to go ahead and take me back to the hospital. Once there, they decided to go ahead and admit me again to see if they could find out what was wrong. They now think I have a viral cold or something that must run it's course. Unfortunately, I was discharged yesterday but have to be on oxygen for probably the next 2 weeks. Mommy said she will try to make it not limit my activities too much since I like to be so active.
We have to go back to the pulmonogist in 2 weeks to see if we can now get off of the oxygen. Until then, I'm trying to heal and get stronger and bigger.
I still am close to 13 pounds even after 2 hospital stays, so atleast I didn't lose too much weight.

Home from Hospital 2/17/07

2007-02-17T23:41:00.000-05:00

I have been in the hospital for the past 4 days. Mommy and Daddy took me in on Valentines because I was running a fever and mommy couldn't get it down with Tylenol. Mommy took me to Harbor, thinking that I had an ear infection, and she also suspected I was still teething. Well, when we got there--- my saturations were kinda low so they did an xray of my chest, and also gave me a breathing treatment.
The treatment seemed to help. The x-ray showed that I had a slight pneumonia.
Mommy and I were taken by ambulance to the University of MD-- because Harbor doesn't take care of babies with trachs.
Once we get to UMMD, we are admitted to the PICU. I stayed there Wednesday, and Thursday night. Friday, the moved me to the step down unit and even said that I probably didn't have pneumonia after all, maybe just a bad cold.
Today they finally left me come home. I was so happy to see my house and my stuff!

Hopefully we won't have to make anymore emergency trips to the hospital. I don't like it there!

If all goes well, I should be back to daycare this Tuesday.

2/7/07- I'm Hungry don't you get it?

2007-02-07T12:15:00.000-05:00

Mommy had been video recording me for over an hour, and it was getting close to nap time. I wanted my lunch and eating the stuffed rattle just wasn't cutting it. It tasted nasty and I sure tell mommy about it in this little video clip.....

PS. Mommy doesn't make me eat mr stuffed rattle everyday, so don't call social services.

2/7/07- The Hypnosis

2007-02-07T12:11:00.001-05:00

Mommy was videoing me and suddenly I wasn't paying any attention to her and kept staring to the right. Mommy looked to see what I was so interested in, and it was the DVD player pause screen on the tv. I would not stop looking at the bouncing box.

2/7/07- Give me the camera and noone gets hurt

2007-02-07T12:10:00.000-05:00

Video speaks for itself....

2/7/07- Look who's talking!

2007-02-07T12:09:00.000-05:00

I'm getting really good at my speaking valve now. I can't speak loudly, but I whisper sounds a lot and I can cry. Mommy called poppop and granny while I was crying the night before last so that they could hear me. Poppop said I have a good voice box!

Here is a video of me learning to talk with my valve. Go me!

2/7/07-- The big 8 Month Old!

2007-02-07T12:04:00.000-05:00

Today I am 8 months old and tomorrow I start daycare! Me and mommy have been playing all day and I'm really having a fun last day!

Mommy has a few videos of me speaking and being hypnotized that she will updload later this week.

Here is a pic from today:

Updates....

2007-01-30T01:31:00.000-05:00

I received my speaking valve last Wednesday. The docs told mommy to let me use it a few times a day for as much as I can tolerate, starting at 5 minutes each. However, I'm a champ and I'm already using it for about an hour and a half and a couple times a day. The goal is to get me on it all day long, and then I'll get a plug--- and from those tests my trach can come out!!

On Friday I got 2 shots, one for my synagis (RSV vacination) and another flu shot. Mommy says I'll be getting a bunch of shots in March again.

We are still not sure when I'm starting day care, but we think it will be on 2/8

Other than that, I'm now eating peaches, bananas, prunes, pears, and carrots. I love food!

I now weigh 12 pounds 9 ounces. YIPPEE!!!

1/29/07 The Jumperoo

2007-01-30T01:22:00.000-05:00

Look I'm a jumping bean!

1/19/07 Aunt Ronnie's Concert

2007-01-20T00:49:00.000-05:00

Tonight I went to my first concert ever! I got to see my Aunt Ronnie play the violin in her first concert. So it was a first concert for both of us. I liked listening to the music and I got to see Granny and PopPop and Also Great G-Mom Mrs Anna.

Nothing really knew to report, other than I'm eating well and doing good.

Next week we should have more updates because I go back to the doctor again.

Hopefully more pictures to post soon too.

1/13 Big News!

2007-01-13T17:38:00.000-05:00

This week has come and gone and I have alot of news to share with everyone!
On Tuesday me and mom went to tour the daycare. It is pretty nice. It looks like I wont be able to start daycare until around Feb 8th. This means mommy is taking more time off of work to be with me.

I went to the pulmonologist and the Nicu clinic on Wednesday.

The pulmonologist doc is ready to pull my trach out! In 2 weeks I will have my speaking valve which will teach me how to blow air out of my mouth around my trach, which will cause sound to happen. They will also start to cap off my trach for certain periods during the day for "practice trials' of breathing. I have to see an ENT doctor in March to make sure my throat and trachea structure is okay-- if all is good they will cap it off for longer periods and I'll have a sleep study done. Once that is clear, my trach will come out! So it looks like I could be trach free as early as March! YIPPPEEEEE!!!

At my NICU appointment, they said I was right on target for a 4 month old (which is how old I technically am). They said the only thing I could use help with is arm strength, which I can gain by having more tummy time. Mommy has been letting me play on the floor on a blanket and I have a good time rolling over and being on my belly playing. This should help my arms. They also said I could start eating baby food. I tried peaches for the first time today and I really love them!

In addition, I'm getting yet ANOTHER tooth. Mom thought I was being pretty cranky and chewing on my hands alot, so she checked my tooth that is already there and noticed another one popping out.

Mom is still dealing with my night nurse not letting me sleep at night and i think mom is getting pretty fed up about the whole situation. Mommy said she might get grey hair soon.

Well until next time,
Keith.

My God-Mother (AKA Aunt Brandy)

2007-01-10T00:28:00.000-05:00

This one sorta got lost in the mix, so I wanted to make sure mom posted it here for all to see.

Meet my God Mother, AKA Aunt Brandy. She is mom's bestest friend ever. I can't wait until I get big enough to play with her kids Cade and Darcy.

1/9/07 The many faces of Keith

2007-01-10T00:19:00.000-05:00

I'm mommy's

Sweet......

Laid Back......

Silly......

Happy.......

Sleepy Boy...