Thursday, May 31, 2012

Don't say a word....

...but it looks like we might be going home this weekend. Let's all play dumb and keep our lips sealed so that Rambo doesn't pick up on it. 


He has done extremely well the past two days and although his lungs are still filled with 'stuff' the virus has moved on. We are now just getting through the residual affects (effects... whichever). I'm not sure whether we are looking at tomorrow or Saturday but I'll take either one. As long as an end is in sight then I'm okay with that. 


Right now he is happily sitting in a bouncer for the first time in over a week and I'm pretty sure he couldn't be happier. He has missed bouncing A LOT. He's almost asleep and I'm hoping he conks out here soon so that I can grab some lunch. 


In more important news (don't take it personally, Rambo, it's just for today), today is my and Ben's 9th anniversary. I never thought we would make it. :) (Yes I did.) I love you, Ben, and I hope one day we are that cute old couple holding hands walking into Walmart. You in some schnazzy old man garb and me most likely hobbling on a cane. But we'll be laughing and smiling and happy. I say it every year, but I love you more today than I did when I said "I do." You really are the intelligent side of this relationship, let's be honest. But I know you can't deny how endearing I am :) I love you forever!


And on that note, Theodore is asleep and I'm getting out of here while I can!!!

Wednesday, May 30, 2012

Big move.

Today Rambo is being moved out of intensive care and into intermediate care. Finally! One week in the PICU is more than enough. He has been off the vent for more than 24 hours and is back down to almost baseline oxygen. He hasn't had a fever in a few days and it appears that this virus has moved on. 


There was a short debate on sending him home versus going to IMC. The reason for not coming home - his lungs still look horrendous. There has been little to no improvement. How he is breathing normal is a question for all of us. I'm sure the fact that he no longer has a fever and overall is feeling better is very helpful. He even sounds okay when the doctors and nurses listen to him. Usually it's very evident when something is going on in his lungs but this time has been different from the beginning. Also, his long stay in the PICU was another factor in not sending him home quite yet. 


I'm trying to prepare myself for a long stay. Once he goes to 'the floor' he will be on the pulmonary team. They usually like to keep him extra long because he is always changing the game up last minute. With the way his lungs look I doubt they'll be letting him go anywhere anytime soon. But I'm also hoping for better and know that anything is possible. 


I am SO thankful that we have made such improvement in a week. Last week at this time it was a very very different story. This was the worst he has been in over a year. I hope never to see him look that way again. I hope never to have him flown out again. I hope it's never necessary for him to be on the vent again. But, he's pretty cute so I think we'll keep him. Even if those things do happen again at some point in the future. 


For those of you wondering: Yes, I am up for company. Ben had to go back to work so now I'm lonely (I say in my most pitiful voice). Yes, I am up for any kind of food you may want to bring me. Yes, you may bring me sushi- you don't need to beg. Yes, I will always drink a cup of coffee. Yes, you may take my place for a day. I hope that answers your questions :)


I'm taking a big sigh of relief that we are improving. I feel much better. I'll see you all on the other side. And by 'other side' I mean anywhere outside of here. 



Tuesday, May 29, 2012

Update 3.0

So far this day has been pretty good. This is day #2 on trach collar instead of vent and he is doing well. They did return him to the vent overnight for extra pressure support but tonight they are going to try to keep him on just the collar. I think he'll do well. They did not get an xray this morning but I hope they get one tomorrow. It will prove to me that he is actually improving and not just building strength to fight this whole thing off again. His mood for the most part has been happy.... until I get here. It's like as soon as he sees me he can no longer have fun. I do not like this. 


Yesterday I tried from 3-7:30 to get him to calm down and sleep. It didn't work. Ugh. Today it only took me about 2 hours to get him to fall asleep. I hope we don't have the same problem this evening. I'm sure he's just as ready to be home as I am.


Speaking of home..... we are not there yet but are closing in. IF he has a good night tonight and  we can get him to base line oxygen and no other new problems arise and his xray looks improved we could be there in a few days. It'd be nice to actually be home for our 9 year anniversary on Thursday. I'm not holding my breath but there is a slight possibility. Just don't let Rambo know.


I'm off to find some food to fill my belly. 






Monday, May 28, 2012

Pro.....gress....????

This was the happy sight I walked into today:



(Trach collar instead of vent and a free arm and leg! Little man is hap-py to have his arm free again. )


Which is by far better than this 




(Where we started.)


Thankfully they were able to get another IV in his hand about 20 minutes before the head one gave up two days ago. Talk about good timing. And this is what we found on the IV board



Quite an appropriate quote from John J Rambo. Thanks to the one and only Jibrii who got the IV and also took the time to look up a situation/child-appropriate quote from Rambo. He said it took longer to find the quote than to get the line. This I believe. 


Here is where Ben and I have been spending our time




The new Children's Center is quite nice. There are certainly its ups and downs. For example: the couch and chair are ups. Standing in the hallway for 3 minutes looking for someone to suction him is a down. I'm torn. 


Today because Rambo was off the vent I got to do this




Which I haven't been able to do in 6 days. 


So, why the hesitation when I say progress? Because I still can't really say that there is any. He is at the moment no longer vent dependent, but the issue is that his lungs haven't improved. So although he is much more comfortable with the trach collar, the question is how long should we leave him like this? Will he inevitably wear himself out and end up in the same position he was a week ago? All these are questions that can't be answered, we just have to feel our way through. The plan (until someone decides to change it- which will most likely happen) is to keep him on the collar for today, if he can handle it, and give him some vent support at night. I like this plan. That's how I know it won't happen. Generally, if it makes sense to me someone changes it. Plus, there is a new team that starts rounding tonight so that's another reason I'm not convinced the plan will remain the same. We'll just have to wait and see.


It's weird seeing him back on a vent. He hasn't been on one in over a year so this feels like a huge step backwards. In reality, it wasn't... I suppose. He just needed the extra support to get over this virus. (Which unfortunately hasn't gone away yet.) But it's hard to not think that it's going to slow him up. I hope that he gets out of here soon and still can and still wants to roll and almost crawl and play. He's a resilient little boy for sure. And on a good note, because I can now hold him and he is free to somewhat move, his mood has improved and he fell asleep in just over an hour today as opposed to it taking him 2-4 hours.


Please pray the doctors know what is best. That they don't get ahead of themselves. And that Theodore's lungs start showing improvement. 


All in all, it's been a much better day. And I may even ever so quietly whisper that there was some improvement :) Nobody say it too loudly though.

Sunday, May 27, 2012

Do I spy...?


A smile???? Why yes I do. And also nose bubbles. We have been able to squeeze out a few smiles from little man for the past two days. It's a rare occurrence but a welcome sight. Right now Rambo is absolutely hating that he is stuck on his back with his arms restrained. He wants to be able to roll from side to side and/or bounce in his bouncer to fall asleep. Neither of which are possible so he is a nightmare come nap or bed time. Most of our time has been spent trying (in vain) to console him so his heart rate and temperature don't get high. In the picture I was actually enjoying a few minutes of "This little piggy..." and "Pat-a-cake". I'm in the whole mask get-up because he has a contagious virus and we don't want to spread it so anytime we get near him we have to put on the gown, gloves and mask. 


As far as progress goes, there is none. Well, that's not true. There have been no set backs for the past two days so I'll take that as progress. He has not improved, but he isn't getting worse. His xrays show that his lungs are the same (equals bad) but it seems he has rested some and we are carefully lowering his vent settings to see if he can handle it. Obviously the hope is that this will not cause his body to get tired out again but I guess we can only do so much and then leave the rest up to him. 


I was going to upload a few more pictures but they are taking forever to upload right now so I'll try again later. I'm going to go drink some Orangina and limber up so I can stand for another two hours and try to get this kid to sleep. 

Saturday, May 26, 2012

Risking it

But I quickly wanted to say that we just got off the phone with Rambo's nurse and there were NO setbacks last night. Woot! Hopefully this is the start of an upward trend.....

Friday, May 25, 2012

I'd be lying if I said...

...that Theodore is a lot better today then yesterday...that Theodore is even slightly better today then yesterday... That it's usually good news when you get a phone call at 1:30am... That moving away from a "more portable" vent to a full fledged ICU one is progress... That deciding to go ahead with a picc line was an easy decision (and then when that became a non option, being ok with the fact that they only have one little bity peripheral IV at the moment)... That I don't have to constantly remind myself that although I carried Theodore, God formed him and loves him more than I do... That I'm finding it easy to remember that my life today is not necessarily an indictation of what my life will be like tomorrow (remember telling me that, poppy?)... That I am entirely happy with the thought that he is not one step outside of God's will for him... That I didn't go three days in a row without makeup - including out in public. The truth of it is that Rambo had a bad night. A really bad night. His lungs are worse today than they were yesterday and we're getting ready to do another X-ray on them. The picc line is not an option because he literally has no veins to enter. His nose bubbles have been less today but the docs say he sounds more course and more inflamed. Steroids, another antibiotic, and a light sedative were started today. He's not sleeping almost at all. They gave him a one time dose of extra lasix to help get off some fluid. We'll see if that needs to continue. It appears as though we are in for a longer ride than we expected. Go figure. He has yet to have an upward trend and the docs are not even guessing. With the virus Rambo has they said it usually peaks at day 3-5. We're on day 8. He can't make it easy. Hoping this sedative takes effect and he gets a nap because he's been a beast all day. On the bright side, he does seem to like his tv so that's been helpful.

Thursday, May 24, 2012

Thankful 1.0

Today I will not think about how Rambo was worse today than yesterday.

I will not think about how his fever and heart rate are up.

Or how his pnemonia is worse.

Or how we are away from 3 of our kids yet again.

I will not think about how we will miss out on our anniversary weekend.



THIS IS THE DAY THAT THE LORD HAS MADE.

LET US REJOICE.


I will be thankful for....

Sushi and Sapporo.


A harbor view (even in a city I don't care for tremendously.)



Cheesecake!!


(All of which were from our evening of choosing to make the best of our situation and enjoy our anniversary even if it's not what we had planned.)

Finding my three year anniversary gift that I lost several months ago!
In the pocket of a sweatshirt! Woot!


Humor from the PICU staff.




Raspberry Cinnamon Rolls. RASPBERRY, people!! Be jealous.



And to list a few that I don't have pictures of....

Rambo being slightly less agitated tonight before bed.

God continuing to give me the urgency to get Theodore more care.

The forsight to fly him out.

A husband who put up with my exhaustion and unrelenting concern. And who supported me to make sure I was satisfied.

Parents who drop what they're doing to come to help:
My mom coming last minute to help me rush to the doctor only to turn around and be sent home.
My mother in law coming last minute to help me decide what to do.

*For the few who may care: Today is not actually our anniversay, it's the 31st. Our plans were for next weekend, but we don't know where we'll be. And funds are now being spent here.
9 years! I seriously deserve a trophy. :)

I'm walking in faith today. Hopefully I'll do the same tomorrow.

Linking up late in the day with





Goodnight!


Wednesday, May 23, 2012

Update 2.0 (Details 1.0)

We're finally sitting down tonight in the Children's House almost ready for bed. (Thankfully, they were able to fit us in. Yay!) The past two days have been tiring, to say the least and I am looking forward to a great nights sleep. Hopefully.

I'm sure some of you are wondering what exactly is going on, how Rambo is doing, and why he was flown out. I will try to answer all of that in a not too lengthy post. 

As you know, he was struggling over the weekend with a high fever that wasn't coming down with medicines and was making him overall miserable. I took him to the doctors on Monday because he just wasn't getting over it and starting to have more critical issues in my eyes. I told the doctor when we got there that I wasn't sure the hospital could be avoided this time. One of my biggest concerns was dehydration because Theodore had been struggling with that, but he assured me he was not dehydrated. He thought it was probably the same virus the other two kids had and would be over it shortly. Control his temperature and give him lots of fluid and go home. I wasn't completely satisfied with that answer but was glad that I had gotten an objective perspective. 

Later that day Theodore's fever spiked to above 104. It had yet to be that high and it didn't make me happy. A call to Hopkins, our local hospital, and the doctor again and we are still at home 'managing' it. 

I will pause now to say that I do not necessarily think that any of the above people I mentioned did anything wrong. They were all doing what they thought best, but I still could not shake this urging I had that something wasn't right.

Thankfully, Theodore fell asleep that evening and slept comfortably through the night. But the next day held the same things as the day before as well as new difficulties. He started desating. His oxygen levels that should be at least a 94 dropped suddenly to 77. When he was awake he was sitting in the low 80's. His temperature would not come down unless he was in a bath (which he got for at least 40 minutes 3 times a day at this point). That really was the last straw for me. I had utterly lost it. I had no more control of my exhaustion and the feeling that was killing me inside that I was not happy with what I was being told. My mother in law texted me at just the right time and I immediately called her back and burst into tears telling her that I didn't know what to do. Of course she came out to my house almost immediately to help me assess him. As soon as she got there she calmly said "Let's go." Rambo was pale. He was gasping. He did not look good.

We got to the hospital as quickly as possible. For any of you, and I'm sure there are a few, who have had troubles with our local hospital which will remain unnamed, I give them tons of credit. They asked how long he had looked like he did and rushed him back. As soon as he got in a room he was surrounded by doctors. Literally there was not an inch at his bedside to be spared. Theodore was having some kind of episode and EVERYONE was concerned. Most of you know what we have been through with Rambo, and I can honestly say that in light of all of that, this was scarey to me. It took about 2 hours of them working on, fussing with, and caring for him until he started looking better. 

There are many details that I won't go into. I just don't have the energy. But I'm sure you can imagine the number of tries to get an IV, the talk of what was happening, having his pediatrician look at him again.... It was crazy. And a part of me wishes that could have been avoided. Alas, that was not the way it was meant to be.

We found out they were flying him out and I am so thankful they did. 10 minutes into the flight he had another episode where his oxygen dropped into the 40's and they had to bag him the rest of the way.

  (Getting ready for his first helicopter ride.)


When they got to Hopkins he was immediately admitted to the PICU and put on the ventilator. Where he remains.

Now for the update: Not much has changed. Theodore has been sleeping.


and sleeping and sleeping and sleeping and sleeping.....

What happened?
His little body just couldn't fight anymore. He does have an infection of some sort but by the 5th day his body was so stressed it was shutting down. Right now he is thoroughly enjoying the vent doing most of the work. He needs lots of rest. We don't know how long it will take, but we are SLOWLY working down the settings on the vent. (By slowly I mean they changed one miniscule thing today. They might try something else tonight.)

He also had a bunch of stuff in his lungs. That is all finally coming out.



...out of his nose. Gross. But also impressive. These were two rare moments when he was awake today.

We left him asleep and comfortable tonight. I honestly hope he dozes most of tomorrow too and lets his body recoup. Aslo when he's awake, he's still really really agitated. 

I'm off to bed. I know there was more I wanted to say but can't remember at this point. I hope this helps fill in some gaps.. and makes sense... 

I'll update again soon. Goodnight.

Update 1.0

This is going to be short and sweet because although it's 7:30 in the morning and I'm already showered, I'm still incredibly tired and haven't had coffee yet. Me not nice. So quickly for the many of you who were not in the know, Theodore was airlifted to Hopkins yesterday afternoon. I promise for details and pictures later but I thought an update on where we are now is more appropriate. It basically looks like there are either several places of infection and/or collapse in his lungs. It has been nearly impossible to get blood from him. Almost impossible for IV access. I think they've tried for an arterial stick at least 6 times with no success. I shan't even talk about the IV tries.... But right now he has an IV in his head. He has been confirmed with some contagious respiratory virus that may or may not have gastrointestinal issues. They've taken all sorts of nonblood cultures and we're waiting to get the results of those. Right now, Theodore is sleeping comfortably as he did most of the night. He is on the ventilator because he needs the positive pressure right now until his lungs 'pop' open. He had a bit of bloody secretions from his trach and nose but we are attributing that to just some inflammation. We'll see how he does today while he is awake, that is usually when he has some bad episodes (for lack of a better word). Ben and I are enjoying our new digs at the brand new Children's Center. Not really, but it's much nicer than before. I said before that i'm not nice right now, but honestly I feel better than I have in a week. As soon as we got to our local hospital I breathed a sigh of relief that his care was no longer fully in my hands. Right now I'm on a mission to go find some coffee and maybe a Denny's. I promise for a more detailed post later today.

Sunday, May 20, 2012

Good news.

It wasn't strep.

No, it's a highly contagious virus that just has to work itself out. Nothing we can do for it. So, yay. It also means that we can't go anywhere... oh, wait.... I don't think that's going to be a problem.

But in all seriousness, it appears that Israel and Emma are on their last day of it. And thankfully, Ruth shows no signs of having gotten it. Unfortunately, Theodore has caught it and the last two days have been nothing but extremely high heart rate, uncontrollable coughing, fever that won't go down, and constant crying. Poor guy is miserable. Today is day 3 for him and the doc said it usually lasts 3-5 days. Maybe we'll get lucky and tomorrow will be better.

Since we're on the topic of good news I'll continue the subject I brought up the other day (Rambo's genetic appointment). No, don't get your hopes up. This is a sarcastic 'good news'. We have again been officially told that he is one of a kind. But the good news is that there is a new test out that looks at each genome individually (or something like that). It only costs $8000. And insurance doesn't cover it. Of course it doesn't!! But that's okay, because the good news is that it probably wouldn't help in his case anyway. Awesome. I'm honestly not sure why that is. This genetic stuff is way over my head. But according to the doctor he believes, because of the troubles that are manifest in Theodore, that his disorder is dominant not recessive. Quickly that means that if he were recessive: Ben and I are most likely carriers of a funky gene and those two genes matched up with Rambo. Therefore, causing all his issues. Dominant means that neither Ben nor I are carriers of anything but for some unexplainable reason Theodore got a funky gene. That means the good news is that, IF he is dominant there is only a 3% chance of having another child like him. That's comforting. I think I'm gonna go get pregnant again right now. I suppose that is better than the recessive option which is a 25% chance. 

After being told he is most likely dominant, he said that he also believes that Theodore has a new disorder: one that hasn't been seen before and is completely unidentified. We thought this before but were hoping with some time something with Theodore would change or present itself as the 'lightbulb' for what he has. It hasn't. 

There is a study that has just started (I believe it involves the new test) that his doctor is going to try to get him in on. He says he's pretty sure they will take him because he's an interesting case. I've found that being an 'interesting case' is not ideal. However, if they don't take him this time around he will keep trying. Maybe we'll get some answers. Maybe we won't. But I'm certainly not going to spend $8000 on a 'maybe, probably not.' So, if the study accepts us then we'll take it. 

Maybe I'll be able to get some pictures today that I can put up... maybe I'll be able to get a few plants dug into the ground... maybe, just maybe, I'll have an entire 30 minutes consecutively where Theodore doesn't need me.... Trying to keep my head up today.      

Thursday, May 17, 2012

On second thought...

This is the second go at this post. Not because my first one wasn't good enough, or witty enough or because I didn't finish it or... .anything.... Just because I thought better of it. You see, I've had a hellacious week.

Hell.
A.
Cious.

There were certainly the good moments like Emma's birthday. Like Ruthie making me hard boiled eggs for breakfast on mother's day. Like the birthday/mother's day party. Like Emma so innocently wishing over her birthday cake candles to be the tooth fairy. (Adorable, amiright?) I'm willing to admit that when she told me that it almost brought me to tears because that sweet innocence will be gone all too soon. But for right now, she really believes she could be the tooth fairy. And no worries, Ben was sure to capitalize on my sad state by mocking me and actually making me cry. Thanks, babe. I can always count on you. Lord help me the day Emma finds out the tooth fairy isn't real. She couldn't care less about Santa, but this is going to break her heart - and mine. Like Theodore's extra good good mood for a day. 

Other than that it's been at least 7 days of frustration and busyness and more frustration. So that's why this post originally started with something along the lines of lots of insinuated expletives and me saying I'd rather drive nails into my head then live.

I'm 99% sure that two of my kids have strep throat. Please someone tell me how they got strep throat when they don't go anywhere!!! Nowhere!! So now I get to take them to the doctors tomorrow(hopefully they can fit them in). As though I haven't done that enough this week. They have fevers which means I also have to buy my third bottle this year of BOTH tylenol and ibuprofen. That junk is expensive. Of course I'm going to buy them. They are my children and need to feel better, it's just one more thing.

We had a pointless trip to Baltimore yesterday. Okay.. maybe not pointless, but it could have and should have been done over the phone. (More on that appointment later.) And today we got to JHH a half an hour early (yay us!), got his vitals taken and made it to the room just on time where we proceeded to wait 50 minutes for the doctor. Who, when she FINALLY comes in, goes about her normal business like nothing is wrong. No apologies or acknowledgment of the wait at all. She seriously acted like she was early instead of late. I.was.seething. 

I get home from the hospital today only to rush to take the puppy to get his vaccine so he can go to his puppy class on Saturday. Stop and pick up McDonalds for dinner for everyone and there is no longer a dollar menu. 

And then after doling out medicines and cool cloths to the kids before bed the stupid bathroom door falls off. It's a brand new door. Why is this thing falling off? AND THEN after telling the kids not to touch it..... yup.

Really?

And now we have to count on our family/friends once again to come once again to help us out once again with watching Theodore or the other kids or driving me somewhere... so the kids can go to the doctors tomorrow. No one gets a break. I'd like to take this moment in time to apologize to everyone I've ever known for how incredibly dependent upon you I've become. My life is ridiculous and you are suffering for it. I know you probably cringe every time you see that I'm calling you. I know you are giving up more than I'll ever know to be at our beck and call. Please trust me when I say that I hate it too. I HATE that I'm calling you and asking for help again. I HATE that it can't just be a call to chat. I HATE that I'm cancelling our plans last minute because something came up.

All that being said, my feelings haven't changed since I started the original post. They are the same as the expletives and the like. But I guess self control got the better of me. There is no point in airing my frustrations to the world. Although, Ben might prefer that instead of a heated phone call to him :) So instead I will try to run to the One who is constant. Lay my grievances out before Him and pray that I come away with a sacrifice of praise. Because, if I'm honest, what a sacrifice that is sometimes.  

I also remember saying I was going to try to make this years posts be a little more positive. So on that note, creepy Bay Bridge toll guy hitting on me.... is a plus???.... Sour sour lemonade, people.

   

       

      

Tuesday, May 15, 2012

30 seconds.

We had a quick 30 second cell phone photo shoot this morning. Rambo was being exceptionally photogenic...








...on the move as always. Hair out of control as always. Cute as always. Happy and not miserable NOT as always. That's something to be thankful for.

Saturday, May 12, 2012

That was successful... kind of.

Today is Emma Rose's 5th birthday!!



She said last night she was going to wake up early and get in my bed for birthday snuggles in the morning. I didn't believe it until she actually did it at 6:45am.

I think she's had a pretty good day- hello kitty tablecloths, presents, cake...

Ben worked today so her party is on Tuesday where she will again get out the tablecloth, open presents, eat cake...

Today was also our first Puppy PreK class. I am proud to say that I made it out of the house and to the class on time with two kids in tow! That's pretty amazing for 9am. Of course, this was all thanks to our nurse. Somehow I managed to find a place for the dog (they don't come to the first class), a place for my oldest, and a place with me for the girls without even remembering Rambo. How do I forget him? Imagine my surprise when my sister in law asked who was taking care of him for that hour. (Thank you, Leah, that could have been bad. Don't tell anybody I forgot about him.) Thankfully, we had a few extra nursing hours we could switch around and she was kind enough to oblige.  

So I thought our day was going pretty smoothly... until....

One of the two batches of cookies I made this morning got 
water spilled all over them (they were a gift... 
Sorry, Rob, I hear they taste the same soggy.)

Emma turned her cake upside down to "put it the right way."

My sewing machine broke the needle somehow in the midst of 
sewing something.

My favorite cat got "chased" out of the house by the dog again.

I'm sure there were a million other things but I shall think of them no more. This is why I'm considering it a semi-successful day. Nothing too tragic, just little tiny constant drive me crazy frustrations.

But just to make me smile... and then have to get up and untangle him...

 
 ... is Theodore just being himself.

Enjoy the rest of your weekend, folks! Have a wonderful Mother's Day all you wonderful mothers!! 


 
 

Friday, May 11, 2012

Up and up.

*whispering* Rambo is doing better each day. After his downhill day this week I was sure that Hopkins could not be avoided. Whatever he had appeared to be in his lungs. Not sure what happened over that day and a half but I guess he decided he was going to get the better of it this time. I like that decision. Hopkins avoided again!

Next week we have two Baltimore appointments, of course on back to back days. I suppose making two trips up there is far better than having to stay there. But I do hear the new Children's Center is nice... I guess that's something to look forward to if needs be... Rambo will see his geneticist and then nutritionist. I'm hoping that new tests are out for genetics, but I doubt it. We haven't heard anything from his doctor saying they've found someone else like him or that new tests have been completed. My hopes are still up for a new genetic disorder named after him. Looking for the bright side, people. 

I'm not sure the nutritionist will change anything. His weight gain has evened out and he doesn't seem to be getting too chunky. His glucose levels were high last time so we'll see if they want to do another test on that. But other than that we're holding steady. 

In different news, my little girls birthday is tomorrow. Emma Rose will be 5. UNBELIEVABLE. She's a precious girl and I can't believe she is growing up so fast. Love her!

Don't forget it's mothers day this weekend. You have now been warned - DO NOT FORGET. You no longer have any excuses. Jewelry, plants, and/or breakfast in bed are always winners...

Also, check out the Rambo's Heart page for some updated info! 

Tuesday, May 8, 2012

"I know it's not always easy being my friend..."

Or, in my case, Theodore is saying to me "I know it's not always easy being my mom..." Unfortunately, this is as happy as Theodore has been the past few days

(sorry for the dark picture... cell phone....)

I bet you'd never guess he appears to be coming down with something. I've seen him smile once today.... that's all. And I've only been able to not be holding him while he's sleeping. Late in the weekend he started acting like something was coming. And it's only progressed. It's probably tracheitis. Again. I have no idea how to keep him from getting that. We keep his trach cleaned and changed and still.... oy vey. Who knows with him. But this should most definitely make for a fun day in Baltimore tomorrow. 

I'm hoping this passes with nothing worse than a tired momma and a good dent in our suction catheter supply. 

We shall see. 

Sunday, May 6, 2012

Buddies.

Sunday morning. 

Ben is asleep. 

The kids are at Sunday School.

It's just me, the kid, and the dog.



Looks like I'm on my own.


Idaho is even sharing his toys.
(The name comes from "Dune" the character Duncan Idaho)

Apparently, I'm not needed. :)

But wait, Theodore DOES need me.

He needs food. 


  
Although, he appears to be working on that too.

Don't think you're going to get anything that way yet, buddy.

But keep trying.

Happy Sunday!

Saturday, May 5, 2012

Saturday.

Could it really be 9:30 on Saturday morning and my kids are still asleep? Two of the four anyway. But it's the girls who are still sleeping so my morning has basically been cake. Woot! 

That's all. I just had to say that I'm finally catching a break this week. Go me! I do hear footsteps upstairs, so I think my nice relaxing morning is about to be over, but that's okay. 

Enjoy today, all. Maybe the entire day will feel like a good Saturday morning. We can always hope.