Free and almost there!

We now have three days and a pick up left!!  I really can't believe it is coming to an end.  In some ways it seemed very fast and in others it seemed like a very slow 8 weeks.  We recieved the good news yesterday that our flu cultures were negative and Carsten was allowed out of his room.  Let me tell you it was like a cannon ball flying out of a cannon I've never seen so much energy come out of a little kid before he was practically bouncing off the celings he was so happy. 

We had a rough week this week with eating because he was sick and congested.  I also started feeding him last Monday so it was hard for me to start out like that, he was vomiting just about every meal.  But today he is finally doing better and he hasn't thrown up once today, he still has a snack to go tonight though so we'll see.  But we are OFF the TUBE except for water!!!!!!!!!!!!!!!!!  I really am excited about this I'm just so exhausted I don't think it has really sunk in yet.  So basically this is his meals, breakfast 7 ounces of food, 2 ounces of milk; lunch 7 ounces of food, 4 ounces of milk; dinner 7 ounces of food 4 ounces of milk; and a "snack" (which I call a fourth meal) 4 ounces of food, 4 ounces of milk.

Yeah praise God for such great progress here I'm so thankful we were able to come and go through this program.  It is still going to be a lot of work for me at home I think that's why my excitement is still a little reserved.  I will be pureeing all his foods to a junior texture and doing his drinks which take about 15 minutes to get 4 ounces in him right now.  I think it will get faster as his skills progress but it is definitely going to be a task at home and I know I have my work cut out for me, especially with baby on the way. 

I'm 25 weeks now, getting excited to find out the sex, we've made it this far though and really 3 more months seems like a short wait to find out.  Either way, it's going to be a fun surprise and Carsten is going to be such a great brother. 

Please pray for my endurance and strength to get us through the last three days, I can't wait for Chad to get here.  I've never been so excited to sleep in my own bed in my life! 

That's it for now, gotta go do our evening "snack":)  Thank you for your prayers and encouragement, it got us through. 

More later....

   
  

Day four of quarantine

So we're going on day 4 now of being quarantined here in our room and I just found out this morning it could be many more days:( People always say that the last part of the marathon is the hardest part, well I can completely relate to that now. These last two weeks are proving to be the ultimate test to our experience here at KKI. The deal is that Carsten tested positive for regular influenza A. The H1N1 I guess is still pending. So, they started him on Tamiflu last night (after having symptoms since Friday!) and told me this morning that he has to complete his round of tamiflu which will be five days and then get another culture which takes another 3-5 days to come back before we can leave our room! Which means that we could potentially be in here until we leave next Wednesday. Seriously we're starting to feel a little like Tom Hanks and Wilson and we're not even half way done.

So here we sit. Since I'm sick too they informed me this morning (after probably being contagious since last Friday) that I'm really not supposed to be out and around the other patients, well what's a mom to do. They called Ronald McDonald house and they won't take me sick either even if my mom came out. I guess just ship me off to Mars or something, they are acting like we have the stinking plague talking at least 5 feet away, masks, etc etc.. and we don't even know if it's H1N1 like it would really make a difference.

Anyway, please pray for our sanity. Despite the setbacks, Carsten is eating like a champ and his drinking is really coming along too. He's drinking two ounces a meal before his food which equals 6 ounces a day. His weight was even up today which is amazing so we still have the potential to be off the tube except for water by next week, another reason to endure this horrible situation and not go AMA running the car and driving back to Atlanta tonight (which I'm really tempted to do).

So the worst is it could be up to 8 more days in this room with a 2 year old that knows how to open door handles, hates being cooped up, is opening all my drawers and throwing clothes out every chance he gets, and going in the bathroom and pulling the emergency light on every 5 seconds, really, how bad can it be? Oh and did I mention I'm 24 weeks pregnant:)

I fed him for the first time at lunch, looks like I'll take it from here out except the drinks, I haven't done those yet. I should also get a lesson on how to puree everything in the kitchen too. You should be hearing a lot from me in the next 8 days, what else do I have to do but blog to you my wonderful blogger friends:)

Congested and claustrophobic,
Kari, Carsten, and baby bridges

Setbacks

Well we've had a few setbacks in the last week.  This won't be long because I'm completely exhausted long story short Carsten decided to pull his tube out of his stomach last week so he had to go in for a procedure to put it back in which required anesthesia.  That went fine then later that night he developed a high fever around 2 and that's when everything went awry.  We're both sick now and his regular flu culture came back positive we're still waiting on his swine flu culture.We have been quarantined pretty much in our room, Carsten can't leave only me which I rarely do in fear of transmitting to someone else.  We won't be able to be off of isolation until he gets another culture that comes back positive which could take many more days.  We are tired, fussy, and discouraged to say the least.  His meals have actually been going pretty decent though and he's been taking all of his drinks.  They have to come up to our room to do everything.  Chad was here this weekend so I was able to go pass out at the McDonald house for literally about 14 hours.  I'm just back from the ER and we're both on Tamiflu finally so we'll see how we feel in the next day or so.  Please pray for our endurance, patience, and health.  We are very ready to be home now but also want to try and stick it out to see how far he goes.  Thank you for your prayers, going to pass out now.

Update - yes we're still here!

We're still here in lovely Baltimore (lovely minus the third world country road conditions) and we're approaching the middle of our 6th week. Things are going well. We said goodbye yesterday to our good friends and roomies (I'm not supposed to mention names because of privacy but I'm sure they wouldn't mind) Megan and Mason. Carsten was sad to see his buddy go. He did everything Mason did, if Mason jumped, Carsten jumped, if Mason wanted to play with the trucks, Carsten played with the trucks. It was so cute to watch him mimic and learn from Mason, I even started thinking a brother for Carsten wouldn't be so bad afterall:)

Carsten's eating is steady and they are still progressing with the drinks. He is starting to accept liquids from an open cup more than before and they have switched from apple juice to milk with carnation instant breakfast to boost the calories some more. He's at about 600 calories a day by mouth so he has about 400 to go which could be made up with liquids and/or an evening snack which I think they might introduce once I get trained this week or next. The feeding therapist seems to think he still has potential to be off the tube except for water so I'm going to go with that but still guard my heart to see where we actually end up. Either way he still won't be getting any formula through the tube during the day and just a little at night so I'm still happy but of course I would love to see him go all the way.

Two sweet little girls just checked in today with sweet moms I'm looking forward to getting to know a little. Carsten has already squished his way in between the two to make sure they are BOTH his girlfriends:) His favorite sign right now is "my turn" in which he politely uses when he wants a toy another child is playing with:) They think he will do great in preschool and has developed some really good play skills.

Chad will be here Friday and Saturday so that will be a nice little break before we enter our last two week lap. The only thing that's hard for me right now is seeing all the cute little Pumpkin Patch pics of my friends and their kids:( I want a pic of Carsten and a pumpkin too! Maybe when we get back we can find one still open somewhere, if not I'll just buy a pumpkin and snap a shot:) That's about it for now, pumpkin-less but still cute pics to come I promise!


Love,
Kari

Funny story

So Saturday morning Chad and I got up and started to head on over to the hospital like we had the day before to meet my mom and Carsten.  Lo and behold after we ran into two blocked off streets we realized, uh oh, the Baltimore Marathon!!!  To make a long story quick, we literally drove around for two hours trying to find an open path to the hospital.  After getting on every highway in Baltimore and trying to inch our way into the city we finally got about a half a mile away from KKI.  So we parked and started walking only to find ourselves at the cross point of the runners.  We literally had to make a mad dash between thousands of runners turning a corner with our suitcases and Chad in his workout clothes and nice shoes!  Just to report we made at through and neither of us were trampled:)  Let me tell you it was not a fun morning but I know we'll look back on it and laugh maybe in about ten years from now!   

Other than that, we all had a great weekend, got some amazing seafood and enjoyed some time outside of the hospital.  Chad got to see all of Carsten's therapies and his meals and the look on his face when he saw his daddy was priceless!!  I'll give a feeding update a little later and pics from the weekend but just thought I'd share our horror/comedy story of the weekend!  Gotta go grab him from speech. 



 

Approaching the halfway mark

The end of this week will be the halfway mark for us here at KKI. It is actually going pretty fast and this weekend will be a much needed break with Chad and my mom. Carsten is going to be sooo excited to see his daddy I can't wait to see it. Well today is going so so. He threw up at breakfast during his drinking trials after he had eaten the 7 ounces, not fun to watch. Then lunch was better, kept it down but fought like a boxer to keep the drinks away from his mouth! I'm starting to come to the realization that we will still be working on drinking once we get home, I'm still optimistic however and know that anything can happen before we leave, but he just needs time to develop the skills to drink and eat texture. They are making another tube cut tonight so whoo hoo! That's great. So basically he's eating 21 ounces of pureed food a day and then he gets 14 ounces milk overnight. Really that's better than he's ever done so Chad and I are happy. They added some texture to his lunch, 4 bites of junior consistency, we'll see how far he goes with that, I'm sure the more they add I expect to see an increase in vomiting.

On a lighter side, the privacy thing here is really a bummer, I mean I think I have had about 5 people walk in on me peeing so far in the bathroom. Good thing I'm not very modest anyway but seriously. I have learned to change clothes in like lighting speed time or else someone is going to walk in on me and see the pretty pregnant birthday suit:) I guess that's what they get if they don't want to knock:) But the last five nights here have been a Godsend, no roomate, the nurse has got to the bag and refilled it before it goes off and Carsten and I have been able to sleep straight through the night for the first time.

Is it Thursday yet?:) Hurry up Chad!!!

update

Well today is going a little better so far. Carsten threw up at breakfast which was expected, then he was able to keep 7 ounces down at lunch. Now we'll see how dinner goes. I'm trying not to get so caught up in every individual session and see the bigger picture and where he'll be in 5 more weeks. They're giving him drinks from a bigger spoon now to try and get more liquid in and still alternating with the cup. It was so cute today at lunch when he was done she said and signed "all done". Oh boy his face lit up so fast and he was signing "all done" like a professional signer:) I think his favorite so far is pureed pizza, yuck! Poor kid. At least he doesn't know what the real thing tastes like.

My roomate just left to go back home to San Diego:( Yep they come from all over here. I'm pretty sad actually, feels like I just lost a college roomate or something. She was happy with her sweet girl's progress. She was almost exactly the same size as Carsten so they had fun together. Maybe someday we'll meet again ordering happy meals together for our kids:)

That only leaves 2 other people here and us in the feeding program. Our discharge date is still set for Nov 9th so that leaves 5 weeks to go after this week. Chad's coming up to visit next weekend right at our halfway mark, yippee! We went on an outing last night to a park, a cupcake shop, and stopped and got takeout from this amazing Mediterranean restaurant. We were all laughing, the feeding kids going to a cupcake shop (it was really for the pregnant ladies in the group)! Carsten did eat a little of the hummus I got and I think he liked it okay. Hoping to take a TLOA this weekend and get out again with Carsten.

That's it for now.

Here we go roller coaster again

Well I'm trying hard not to get on the usual roller coaster ride of having a child with a disability.  These days will come.  Today is just a dip in the ride.  He threw up his breakfast and lunch.  They are trying to give him 7 ounces a meal and he just doesn't seem to be able to tolerate it yet.  I'm sure they'll keep trying until he just throws up every session and we know he's hit his cap.  He did it last night so I know he can do it again.  Mornings are just altogether bad for him and lunch was a fluke gag when he got a bite with his head tilted backwards.  He's like the most sensitive time bomb you've ever seen, one little touch gone awry and up it comes!  Oh the day when I can look back and laugh, for now I'll try to laugh at the days to come. (proverbs 31:25)

The Lord reminded me of a verse he promised long ago Proverbs 37:5 "Commit your way to the Lord, trust in Him and He will do this, he will make your righteousness shine like the dawn, the justice of your cause like the noonday.  Be still and wait patiently for the Lord."

Giving up my own strength and trading it in today for His.  Please continue to pray for our little man. 

Love,
Kari