Thursday, January 29, 2009

We're back!!

Carsten and I are back from Baltimore! Everything went really well as far as the travel and stay there. We got to spend Monday afternoon walking around downtown Baltimore, ate some good local seafood, and saw the Harbor area. Baltimore is a neat town, reminded me a lot of Chicago.
Carsten had his feeding evaluation on Tuesday at 1:00. The whole team came in and interviewed me and then they watched me feed him. The team consisted of an OT, speech therapist, nutrition, behavioral psychologist, and an MD. They were really nice and professional and definitely knew what they were doing.

They recommended Carsten for the day program. It is basically the same thing as inpatient except we stay at the Ronald McDonald house and go over in the mornings at 8 and stay all day to work on eating with some play time in between and other therapies. The program is for 6-8 weeks, the only catch is there is a 5 month wait list! They said sometimes due to insurance coverage and other reasons there are cancellations so there is a chance we could get in before 5 months. I'm hoping we get in before June because that is when we are supposed to move! I'm not going to worry about times and dates because I know the Lord will work it out and his timing is always perfect. However, if we don't get in before June and we do move to Atlanta, there is another clinic very similar in Atlanta so that is always an option. Right now I'm just hoping our insurance will cover the 6-8 week stay at either place. Until then, we are going to keep working on increasing his oral intake and continue going to our weekly feeding therapy in Kansas City.

Carsten was so good on the plane and LOVED watching the lights outside as we landed and all the people around him. He's so interested in everything that goes on it's really cute. He was exhausted by the end of the trip but he still did really well on the plane and around Baltimore. I think he's going to be a good travel companion when I get older:)

Thanks for all your prayers, they were definitely answered and everything went just how we were hoping. We will give updates on when we get to go, they will give us 1-2 months notice ahead of time. We are planning on going to Atlanta in April for our spring break and finding a house! I'm getting really excited about that! Have a great weekend everyone! Chad and I have a date Saturday, yippeee! We found an awesome respite worker that's going to watch him some so we can go out!

Blessings,
Momma Bridges

Sunday, January 25, 2009

Baltimore tomorrow

Carsten, my mother, and I are headed out for Baltimore in the morning. We would appreciate your prayers as we are going through a wide arrange of emotions, primarily anxiety on my part. Please pray that we would have safe travels, that Carsten would do well on the plane with NO vomiting while we're gone which always makes things more stressful, for peace throughout the trip, and finally and most importantly, that the feeding evaluation would go well and he is accepted into the intensive inpatient portion of the program. Thank you all so much for walking this journey with us so far and all of your encouragement and support. We covet your prayers.

Also, Chad and I went to IHOP (international house of prayer) on Saturday in Kansas City. We went to a healing room and had Carsten prayed for. It was a neat experience that I will tell more in detail later. We are BELIEVING through faith that God will heal Carsten and that he WILL eat whether that is now or later.

Thank you, lots of love,
Chad, Kari, and Carsten

Wednesday, January 21, 2009

Military Life

So this is our move update thus far. Over Christmas we found out that we would be going to San Antonio in June. Got all excited, broke the news to the fam, happy joy, fun in the sun, riverwalk, San Antonio. Okay great, got used to the idea and getting more and more excited. Then, phone call from one of Chad's peeps, uh actually that is the right position but the WRONG PLACE! Ahhhh, what?!!! Okay, so where is the place, well, the right place is Atlanta! Oh, okay, we can do Atlanta, good weather, nice city, lots to do, good southern people:) So now, here I am getting my heart set on Atlanta. Such is the life of a military spouse. One day it's Fairbanks Alaska and the next it's California, then no, really you're husband will be deployed to Afghanistan. So, I'm learning to keep our plans held at a generous distance from my heart just in case we get the phone call that completely changes things. You can't get too used to the idea of one place, even then, you will have to move from there in 2-3 years anyway. So, I'm letting go of the "idea" of home as one of my friend's next door has a plaque on their wall that says, "Home is where the Army takes you." To me, it's exciting, I like the drama, I like the not knowing and the possibility in it all and the adventure! I know as we get older, however, it will get harder with Carsten. It's going to be hard enough for him to make new friends at one place, much less 5 or more places! But for now I will rest in the fact that it's Atlanta. I've even already made a friend there that's a military spouse, I now just have to convince Chad to live next door to them:)

If I could only be as content in Chad's new position as I am with the location! Currently, he will be working to train weapons of mass destruction civil support teams all over the country. The teams are first responders to chemical and biological attacks. Excuse me! Will you have to go, will you have to wear all that space garb, will you be exposed to RADIATION??!!! You can just imagine my 21 questions each night as he gets more excited about it:) I just hope he enjoys it and possibly discovers a specialty he really likes. Cause I mean, come on, like when do you think we would ACTUALLY be attacked on US soil with that sort of weapon, uh, well, actually Chad read where its projected to happen in the next three to five years, GREAT!! See, this is my life!

Tuesday, January 20, 2009

OT feeding

We had our OT feeding therapy appointment today in Kansas City. I just had to blog about it because it was a great session today! Carsten ate a few small pieces of carrots with only 1 gag!!! She doused them in ketchup and he like it! Then we got in the car to leave and I usually tube him before we go and I thought I'm just going to try and feed him in the car. Well, he ate a whole banana creme pudding right there in his car seat! Today was a good eating day and I'm thankful. Also this morning he ate a whole banana pureed while we watched Einstein Baby's First Signs:)

I'm encouraged and even more excited about going to Kennedy Krieger. Now, up I go to start his night tube hopeful that someday we won't have to use it anymore!

Inauguration Day

I guess Carsten and I are going to watch the Inauguration today. It is pretty fascinating and a historic moment. It makes you a little emotional even if you aren't a Democrat. I think that the Bush's have been so graceful in reaching out to them during the transition. I feel very sad when people are so disrespectful of Bush and everything him and Laura have done in the last 8 years. He has been our President and he's done the best job he could. I am thankful for all he's done to protect our great country and I think he has had its best interest at heart. I believe that God controls a nation's economic good and bad times knowing what we need to turn to him, not man. I am looking forward to see what Obama will do and I wish him success in bringing our country together and maintaining peace. We are called to pray for Obama so that is what I will do. I am excited to hear the prayer that Rick Warren gives later today, hoping that he isn't afraid to say the name of Jesus where our true freedom comes from! Hope everyone enjoys the big day and praying everything goes smoothly.

On a lighter note, Carsten has started dancing to music, it's the sweetest, most precious thing you've ever seen. He's also getting closer and closer to walking. He can really push his walker around now and will stop and let go. Give him another month or two and I think he'll be walking everywhere!

Blessings,
Momma Bridges

Wednesday, January 14, 2009

My new shoes!!



I'm so excited about my new shoes I had to put a picture of them on the blog. They are Keen's. There is a story to this. When Chad and I were dating we went to the Pack Rat in Fayetteville and he ended up buying me this pair of Keen shoes, they are mostly for outdoors. I couldn't believe Chad just up and bought me this pair of 100 dollar shoes out of the blue especially since we had just started dating. So, three years later I am still wearing them and they are AWESOME! I love my Keen's. The only thing is they aren't covered shoes. So, I decided to get another pair of Keen's and I had to order them online because they aren't sold everywhere, trust me I looked all over Kansas City. They arrived yesterday and I'm so pumped! The best part is they are TEAL colored!!!!!! Chad hates the color of course, he's not a big supporter of my affection to the color teal:( Maybe one day he will come around. Until then, I'm going to enjoy my new Keen's.

Happy Wednesday everybody! Also, we found out that our trip to Baltimore will be completely reimbursed! Wow, God is good.

Tuesday, January 13, 2009

Am I really 30!

Okay so I don't really FEEL 30 whatever that's supposed to feel like. I did have a great birthday though, breakfast in bed, roses, and some not so funny gag gifts about losing my 20's! I think Chad is just jealous because he knows he'll always be 5 years ahead of me! So Chad, yes, you are my "old man" and for the record I will NEVER be your "old lady"! Thanks for making my 30th so special!

We've had a full morning so far, Carsten got his VERY EXPENSIVE LIKE $1000 THANK GOD FOR TRICARE synagis shot to prevent RSV (a very dangerous type of cold in the winter) and some drops for his never-ending oozing ears (not bad though it means that his tubes are working). So after that I pulled through a little coffee place to get something and I decided I was going to order Carsten some strawberry milk. (I really just wanted to know what it felt like to order your child something and hand it to him in the back seat to drink) Well, that didn't happen of course and it did make me a little sad. I brought it home and tried it with his breakfast, wasn't sure if he'd like it or not. He took a few sips, I think he liked it okay, I'll keep trying. Yesterday he did drink about 2 ounces of his formula which was the most he's ever taken.

I've got to work on getting our trip reimbursed or at least some help with it today and I think I'm going to sign Carsten up for gymastics. I figured since he's not getting PT it would be good for him as well as the interaction with the other kids. I wanted to do swimming but the pool here on post is freezing so that's a no go. I've decided to go ahead and do his MMR shot. I've been scared to death of it but after this mysterious rash and the fear of measles I have decided that the benefit outweighs the risk. So we will probably get it this spring after his synagis shots are over. Chad is really helping me overcome these constant fears related to Carsten. I think it's harder when things start out so bad you are prone to continue to worry. I'm going to lay it down though and TRY to stop worrying about every little "what if" with Carsten. I'll always remember this line in one of my favorite books by Linda Dillow, "Worry is like a rocking chair, you can go round and round but it doesn't ever get you anywhere." So today, I'm going to get out of that rocking chair and start living instead of worrying! Have a great day everyone!

Blessings,
Momma Bridges

Thursday, January 8, 2009

Down Syndrome clinic

I took Carsten to the Down syndrome clinic in Kansas City yesterday. It went really well and I was pretty impressed with the services. We saw OT, Speech, behavioral psychologist, nutrition, MD, and genetic counselor. There was a resident that sat in our room the whole time to observe, I guess because Carsten's case was so interesting and complicated. He wants to do a fellowship in Cardiology so that was fun talking to him. I wish that Little Rock had a Down Syndrome clinic, I think it would be really great for them. I probably got the most out of the psychologist who gave me lots of good tips about discipline and positive/negative reinforcement and talking to the genetic counselor.

They also did some blood work on Carsten to check his Thyroid and blood count. A small percentage of children with Down Syndrome develop Leukemia so I think they like to keep a close watch on their blood. I was a little disappointed with Nutrition, I thought they would help me get started on weaning him from the tube, she did a little bit but I don't think she believed me that he was actually eating things. She kept saying to give him 2 Tablespoons of food a day and that was where he was at. Well, this morning he ate 4 ounces of mandarin oranges and I'm pretty sure that's more than 2 Tbs?? I'm really just trying to be patient and wait on the Clinic in Baltimore to help with all that stuff.

Carsten's come down with some sort of virus or something, he's been running a fever the last couple of days and our nights our back to gagging on the tube all night and throwing up stomach bile, yuck! It's really miserable when he gets sick because his reflux really excacerbates. I hope he feels better soon. And I hope I feel better soon from my traumatic experience with a spider in my coffee pot this morning! I went to make my coffee and as I was pouring in the water out comes this huge white spider! I hope I can get through this emotional event as I live off of my morning coffee!!! Guess a Diet Coke will have to do for now...

Happy Thursday!
Love,
Momma Bridges

Monday, January 5, 2009

Carsten's Back!

http://www.pediatricnews.com/article/S0031-398X(07)70770-1/fulltext

I came across this article just now from the Kennedy Krieger Institute where we are going this month. It gives a little glimpse of knowledge about feeding disorders and what it's like to live with one. Carsten got home last night, my parents brought him up from NWA and all his Christmas gifts which took up the whole back of the truck!

It was sooo good to see Carsten, let me tell you he LOVES his Daddy! He was more excited to see Chad than me at first! We're thrilled he's home and we're already having so much fun together. He's starting to push around his walker and can take about 10-15 steps while pushing it! He's really transferring from furniture to furniture in standing. It's crazy how much they change in even a week. He's so amazing, I love him so much!

Chad and I had fun in Kansas City, we stayed at the Crowne Center and went ice skating, shopping, restauranting, (my favorite part of course) and saw a couple of IMAX ocean shows (we love IMAX:)! Now it's back to the daily grind I guess and getting ready for Baltimore. I have to film a feeding session for them to see and send in a big packet. I also need to get my CEU's done for my Occupational Therapy license so it doesn't expire, yes, I may actually go back to work someday:)

Have a great week, I know we will!

Momma Bridges