Monday, December 29, 2008

Drum roll please.....







Isn't our cutie precious?!! He was SO happy that day all we had to do was sit him on the little bench and he just grinned away and even looked straight at the camera, ha! We had a great time on our 2008 Bridges Christmas adventure and everyone got pictures of him. Chad and I are back now and Carsten is at his Nana's!! I just woke up, yep, it's 9:30 and I JUST got out of bed! Thanks Nana and Mimi, we love you!

28 days and counting until Baltimore. I'm getting a little nervous, especially the part about traveling by myself with a toddler. I think I'll have to take only one bag and his stroller. The plane part should be interesting with him on my lap and figuring out where he'll sleep at the hotel, we might have to cheat and sleep together one night. I better go and enjoy our Chad and Kari time, we might go snow skiing today to this place around here that's man-made and I really want to see Marley and Me, I read the book and it was so good!

Happy Monday,
Momma Bridges

Wednesday, December 17, 2008

Breakfast

Carsten's OT Maureen came this morning and Carsten did pretty good with eating. He ate lots of little graham cracker pieces and "mashed" bananas, not pureed! We also tried a saltine cracker and little tiny pieces of cheese. The cheese didn't get down but he ate a lot of the graham crackers. I was feeling a little overzealous and kept giving them to him, I think I pushed him too far again because he choked, gagged, and vomited everything he ate:( Every time he gets a piece of food in the back of his throat it triggers his gag. He's got to push through that though without it gagging him every time. I'm still encouraged though and Maureen thought he is doing fabulous. I'm going to keep giving him small pieces of food until he learns. He really likes chewing and I think he's teething more on the sides, no visible teeth yet though except for bottom middle two. The teeth will help when they come in. He's also drinking sips from his sippy cup and drinks maybe a total of 1 ounce from an open cup. If we're going to get him off this tube the drinking is essential. There's just so many things you can work on with him and I do my best to focus on the most important.

I think he's gaining weight, he feels a lot heavier lately and is starting to grow out of all his 12 month pants and some of his 12-18 month clothes. He is now transitioning from the couch to coffee table in standing and taking a few steps with his walker. He can climb up the steps like a pro! I've had two people tell me that he made the "mama" sound, though I'm still not believing it until I hear it myself! I know he's not actually saying "mamma" but I will be excited to know that he can at least make the sound. He is making more consonant sounds lately, I think the tubes have really helped with that.

I will probably keep updating on his eating, it helps me to write it out and see what I need to focus on each day. This afternoon we will try graham crackers again and maybe I will cook some apples with cinnamon and brown sugar and mash those up for him, how could you not like that?!! We'll see. I also can't find a drink that he really likes other than water. I've tried apple juice, chocolate milk, sweet tea etc...Does anyone have any good ideas for drinking, maybe I should try just sugar water. I don't think he's aspirating anymore(liquid going into his lungs), he does have a swallow study in February to make sure, hopefully he will pass on thin this time.

I've got to get laundry done and packed so we can leave on Friday. I'm so excited about Christmas and even more excited about the week after Christmas. Carsten will be staying with his Nana and Mimi for a week while Chad and I have a little R&R!! We might go snow skiing at this place around here and stay downtown in Kansas City for a night or too. We'll see, I better go and have my quiet time and shower before the little booger wakes up.

Love,
Momma Bridges

Tuesday, December 16, 2008

Eat Carsten Eat!!

Carsten is eating little pieces of graham crackers as of yesterday!!!! I'm SOOO excited beyond words! This morning I fed him some graham cracker and blended pears, he ate all without gagging once! Yesterday he gagged on his last bite and threw up, I think his reflux is still going to be a problem. If I can just learn his limits and stop while we're ahead I think he might get a hang of this!

I can't wait to tell his home OT tomorrow what he did and how I'm starting to get over my fears and try!! We're not going to OT feeeding in Kansas City today because it's snowing EVERYWHERE!! It's completely white here, what a beautiful day for Carsten to eat so well. I couldn't be happier!

Most of you should be getting something in the mail from the Bridges soon so be on the lookout!

Love to all,
Momma Bridges

Thursday, December 11, 2008

ENT follow up appointment and nurse encounter

Well we had our ENT follow up appointment today from the surgery. Everything looks great! Carsten's ENT doctor is really nice and I told him that Carsten has improved with his breathing, snoring, and drainage! I don't know if I ever put this on the blog but when we went in for the T&A surgery the doc said "okay so we're going to do the adenoids today right?" I was like, "uh no, I thought you said BOTH adenoids and tonsils!" He had written down to do only the adenoids. Well, long story short, he did them both for us and removed the cyst in his throat. He really didn't have to do them both but I think he did it just to be nice:) So, for us that means the tonsils are out of the way and no more battling them and their complications for the next 5 or 6 years!

The appointment went great other than the nurse who called us into the room and asked me a bunch of questions including, "He's Downs right?" I mean, come on! I am SO tired of that ignorant question. ESPECIALLY in the medical community!! Usually I'm not a huge "politically correct" person but I guess having Carsten has really changed me. I was proud of myself though, today, for the first time I corrected her. I said, "No, he's not "Downs", he HAS Down Syndrome!" Oh, I did it yesterday too in Wal-Mart with the photo lady though I'm not quite sure she heard me because I said it under my breath:) I think the question catches me off guard anyway because most of the time I'm not going around thinking about my son having Down Syndrome. To me, he's just Carsten. Why do people have to point it out all the time, do they want a prize for guessing that he has Down Syndrome? It's really pretty obvious. Seriously, sometimes I completely forget he has Down Syndrome then that word will come to my mind and I'm like wow, he really does have Down Syndrome but my gosh it just doesn't seem like it, he's just my son, my Carsten, my baby! I am just as happy, proud, totally in love with my son as any other mom.

Back to the question, I try to remind myself that people just don't know any better. Most of them did not take Introduction to Mental Retardation in college like I was blessed to and most of them have not been around people with disabilities or gone to OT school. But even Chad is sensitive to it and he's not an OT! So, I have decided to become a little more assertive, yet gentle, to remind people that it is a person WITH Down syndrome, they are not the syndrome themselves! It would be like asking someone with Cerebral Palsy, are they Cerebral Palsy? No! They have Cerebral Palsy, it is just a part of them like having brown hair or green eyes. Okay, my rant is over, I'm not mad I just want to educate people so that when they have these encounters with other families, they will say it in the most respectful way. I'd like to hear what other people think about this, especially you moms with children with disabilities. Do you correct them or just let it go? This has been a quandary for me for quite some time now. I guess I'm really amazed at how MANY people say "that Downs person", "is he Downs", or yes, even "downsy" before! Am I being too picky?

Oh and by the way, Carsten's photo shoot (you could call it) was absolutely FANTASTIC! You will have to wait and see the pictures though, I don't want to ruin Christmas cards, if I ever get them out!:)

Much love,
Momma Bridges

Monday, December 8, 2008

Bridges Bunch back to normal and Baltimore here we come!!

The Bridges household is finally back to normal after our two week escapade of sicknesses. Carsten is laughing, running around, and being his usual spunky self. Last Sunday after we arrived home from Thanksgiving I was unpacking and ran something upstairs. Lo and behold, on my way back down I found our little C-man on the first landing of the steps! He had crawled up 7 steps and was just looking up at me like "what did I do?" Needless to say we put up our gate the next day.

Carsten is cruising along all our furniture and pulled one of my favorite plates down yesterday from a drawer and broke it in pieces:) He's really starting to get into everything and I'm way past due baby proofing the house. That's one of my goals this week.

Yesterday the three of us were in the commissary and we ran into another family with a 24 year old with Down Syndrome. His name was Travis. Travis was quite a character and the parents really got a kick out of Carsten. We pretty much went down every aisle together and I got about five big hugs from Travis! The parents said they felt old seeing the three of us but I think Carsten brought back some fun memories for them. I was trying to imagine Chad, Carsten, and I in 20 years in the grocery store together, ha! I can only hope Carsten is running through the aisles begging me for all kinds of food, none of them good for him I'm sure!

On a food note, I'm SO excited to tell you guys that Carsten has a feeding clinic evaluation scheduled for January in Baltimore, Maryland! Yep, I said Baltimore!! It's called the Kennedy Krieger Institute. They have an amazing intensive inpatient feeding program where they work to get children off of feeding tubes. I have had my eye on the place since last year, they won't take children until after one. Carsten will be evaluated on January 27th to determine if he qualifies for their inpatient program. If he gets accepted, when they have an opening we will go (Carsten and I) for 6-8 weeks just to work on feeding. We will stay in the hospital there together. They have an amazing success rate, 50% of all children leave the program 75% tube free. Realistically, that's a great statistic!

So, we will be praying that Carsten is accepted and that we can go sometime this spring to the program. I'm so encouraged and it gives me something to look forward too on days when his eating is not so great.

Three of our neighbors are moving this week so we're a little sad. One of the couples held our bible study this fall so as they leave we will be transitioning the study to our house. Chad will lead the study and he did his first one last night. It went great with lots of good discussion, I'm so proud of him and what God is doing in him! I'm looking forward to see what the Lord has in store for our family and neighborhood this next year!

Also, we find out if Chad gets into the SAMS (school of applied military studies) school on the 19th. We're putting it in God's hands and not worried either way. It would be nice to be here another year and one of my good friends Amy's husband who is in the Guard has applied also. It would be wonderful if they both got in and they would be here another year with us, let's hope so!!

We've got our tree up and our stockings on the fireplace! It's getting colder here in Leavenworth and Christmas is in the air. I think snow is in the forecast this week! I can't wait to get started on gift wrapping and Wednesday Carsten will have his picture taken so be looking for more cute pics of him soon.

That's our Bridges update!
Love to all,
Momma Bridges