Long night

Well last night was not the most fun we've ever had but I can't say it was the worst:) Our respite provider came yesterday and watched Carsten from 2:30 to 6:30, it was WONDERFUL being able to get some stuff done and then go out to eat with Chad and another couple. I actually did two loads of laundry, mopped upstairs, and cleaned the bathrooms, woohoo!! But I knew when we got home from eating at 6:30 and Carsten was no where to be found that it was going to be a long night:) She said "oh he kept falling over at like 5:00 and just couldn't stay awake!" As I sat there and did the math in my head like I usually do I calculated that Carsten would be awake by about 4:00 this morning. Boy was I wrong, he woke up at 12:00 instead! He did go back to sleep but for some reason he had a TON of drainage last night and kept throwing up and couldn't breathe through his nose. I really wish the doctors would believe me and do something about his drainage/sinus problems. Too often I think they just chalk it up to oh they have Down Syndrome so there's really nothing you can do! It's not fair that he has to suffer like this. He is on zyrtec but it really doesn't help. I think he needs a sinus xray and possible sinus surgery in the future. In any case, he went back to sleep and slept till about 4:00 and then I was up with him till about 5:30, then Chad rocked him back to sleep and thankfully he slept again until 8:00. So, it was a long night, but I LOVE our respite worker, she is so awesome! She knows a lot of sign and does it with him and she is graduating from nursing school very soon. I will be so sad to lose her when we move.


I'm excited for this weekend, we're going to a marriage conference hosted by the chapel here at the Marriott. Everything is paid for and there is childcare, we just have to go back and forth to get Carsten after our sessions. Oh and Carsten started Physical Therapy this week at a place called Beyond Therapy. I think the doctor felt bad about the whole gymnastics thing so she gladly wrote an order for some PT:) Our early intervention services at the home don't provide PT, it's crazy but I guess they're just hard to come by. So, we are driving about 20 minutes to this place on Wednesdays to get some PT. It was awesome and the girl Tiffany is wonderful! Carsten loved it and was crawling all around and up and down stairs. He even walked with this grocery cart thing and then let go and took about 3 steps!!! He's also starting to stand up just from sitting on his own without pulling up on something! He's getting SOO close to walking, I guess technically he's taken his first steps cause he can take about 3 before he falls, way to go Carsten!!! Boy that will be a teary day when he really starts to walk, both of my pride and fear of all he will be getting into:) He's a little firecracker! He's also stacking 4 blocks on top of each other and will put things in a container. He's starting to sign a few things including more, eat, and daddy, and he loves throwing the ball back and forth. He's learning to drink from a straw too, we have this one way straw where the liquid comes up but not back down, it's pretty cool and he's starting to catch on to it. Speaking of, it's eating and signing time so I'll write more later. Have a happy weekend everyone!

Love,
Momma Bridges

Midnight Cowboy

Here's our little Midnight Cowboy in his birthday suit:) We had fun this weekend with his Nana even though the trip was too quick! Thanks Nana, love you!!

Happy Monday!

Gymnastics

Well we heard from Carsten's pediatrician last night and the doctors at the Down Syndrome clinic don't advise him to do anything like gymnastics until he has his neck scan at 3. I was pretty bummed last night and I actually told the pediatrician that I thought it was dumb! She knew I was upset and called back when I was gone and talked to Chad. I just think this is ridiculous. All they do is sit around and sing and crawl over little mats and stuff. It's also the first thing that someone has said Carsten CAN'T do! I'm not going to let many people tell me that he can't do something but in this case I'm helpless without a doctor's o.k. I went to my spin class last night and spinned my anger off but I'm still a little sad. I just thought it would be more fun than a usual play group, I guess we'll have to resort to that though because I want Carsten to have the socialization. I don't think he's going to have the neck problem because I just know he's going to be a great athlete:) Right now I'm convinced he's going to like basketball because he LOVES rolling and throwing the ball back and forth. So anyway, that's my bummer gymnastics update. Hopefully we'll win the next battle that comes our way.

Happy Thursday!

Battles

So as a mom of a special needs child, there are MANY daily battles I am learning about. Lately, our battle is gymnastics, yes gymnastics. What once was a cute idea and something I thought would be fun for Carsten and help him learn to walk and get some socialization has turned into a major battle. The process started a couple of months ago. Mind you the class has been going since January and the kids have been attending every week. Just picture them dancing, singing, and having fun with their moms, and here we are still just trying to get IN the class.

I decided that it's worth it for Carsten because I think he will really enjoy gymnastics, so off I go to do the requirements for admission, little did I know... It all began with a EFMP "meeting" to determine Carsten's "special" needs. So, I go to the meeting, sit there, and answer the questions to about 10 people so they can determine that he's "o.k." to do programs here on post. Then when I thought we were set to go, the lady at the front desk says, oh wait, one more thing, you have to get his pediatrician to fill out a physical. WHAT! A physical! You don't know what that means in our world I say, that's about a billion more steps for us. It should be easy, very simple she says. Yeah right, I leave very discouraged but determined for Carsten's sake.

Four weeks later this is what we're doing, still trying to get the form filled out for Carsten. I have been to the pediatrician 4 times and have yet to get it!!!! I think we need to do a neck xray to check for atlantoaxial instability she says, (some children with Down Syndrome have unstable joints between their first and second vertebrae limiting their participation in sports because of the risk of neck injury) I just don't feel comfortable with him doing rolls and flips and such and wouldn't want to be responsible. Oh for heaven's sake I'm thinking, I mean do you really think an 18 month old is going to be doing kart wheels!! So today at our appointment she put a call into Children's Mercy Down Syndrome clinic downtown to ask a doctor there what they thought. Now I'm waiting for the call back to either schedule the neck xray or go ahead with the class. Either way, I'm thinking, I still don't have that stupid form in my hand so we're not any closer to starting gymnastics. By the time we get this form filled out I'm sure we'll be packing up for Atlanta! I think at the next appointment I'm going to pull some tears out of my "special needs" mommy bag of tricks to get things rolling a little faster:)

Seriously though, it never ends and what seems to be a simple procedure turns into a monstrous ordeal. I believe that part of it is because people automatically limit persons with special needs. They assume that they can't do things because of their disability. I remember when I used to work for Stephen in college. Stephen had Cerebral Palsy and his speech although intelligible, was impeded. When we were out together people would always turn to me and ask me a question instead of directly to Stephen. I finally realized it bothered him and learned to say, I don't know, why don't you ask him yourself what he wants on his pizza!

Carsten is a talented little guy and I believe he's going to amaze us all. I just don't want anyone to say he can't do this or that because of his Down Syndrome. I don't understand why every little thing has to be such a big deal. I'm not upset with the pediatrician, I understand her caution, just frustrated and sad for Carsten that things have to be so difficult and when he gets older I know he's going to be the one fighting these battles. I only hope I can train him well and teach him that anything is possible for him! I love you Carsten, happy late 19 month birthday!


Habakkuk 1:5 "Look at the nations and watch, and be utterly amazed. For I am going to do something in your days that you would not believe, even if you were told."

Crazy Mornings

I thought I could get a quick blog in this morning before my bible study to help me organize the week. This is a crazy week! I have bible study this morning and then Carsten has OT at 10:15, then OT feeding in Kansas City this afternoon at 4:00. Chad is off today, yeah, so that will help some. Then tomorrow we're hopefully going to start physical therapy about 20 miles from here since the early intervention services won't send us a PT! Then I have a doctor's appt, Carsten has one right after me, then he has music therapy at 11:30 and then I need to clean the house for Chad's mom who's coming on Friday, yeah!! Then Thursday I have to make a meal for Friday, clean some more, and then go for a health assessment free of charge here on post. I got blood taken this morning for it, they do a whole workup on you from glucose levels, cholesterol, heart, fat, etc.. I'm a little nervous but I've been working out consistently (for the first time in a LONG time) since October so maybe the results won't be too painful! Then I have my swim class and the respite worker (who is AWESOME by the way) is coming to watch Carsten. That just about does it until Friday morning when I pick Nana up from the airport:) And who ever thought a stay at home mom didn't do anything! Now that I've got everything written out I know what I need to do. Hope everyone has a Happy Tuesday!

Oh by the way, Carsten drank about 2-3 ounces of water last night from an open cup!!! He's doing so awesome with eating, I'm so proud of him. Yesterday he had a banana for breakfast, apples for lunch, and then peas for dinner and he ate ALL of it! He's getting bigger and bigger so fast. I don't think we're going to need this night tube for long.

Swallow Study update

He passed!!!!!!!!!!!! Carsten passed with flying colors, he is now safe to drink thin liquids! Carsten was scared to death during the study and screamed and screamed to get out of the chair but I was able to get enough liquid in him to see the xray and it looked great! We couldn't be more thrilled and we're just thanking God for such a good day:) He really does answer prayer. Now, if we could just get him to start drinking more volume and get him off this tube!!

Thanks for all your thoughts and prayers! Swallow studies have been know to give me all sorts of anxiety in the past, but not anymore! Way to go C-man!

Love,
Momma Bridges

Swallow Study

Well the time has come for another swallow study. Today at 2:00 Carsten will go to the radiology department in Kansas City and they will watch him swallow in front of an xray to make sure it is safe. They will look at thin, nectar, and honey consistencies. I am praying that he will pass on thin liquids. I know God is able. Either way, I will be happy as long as he passes on something. I'm not quite as worked up about this one like I was a year ago when they were deciding whether he could eat or not at all. I believe that he will do fine and I'm being optimistic this time around:) If you think of us at 2:00 today please say a quick prayer.

I'll post another blog later on letting you know how he did.

Happy Wednesday!

Goin' for a jog!

Here's Carsten and I trying out our new jogging stroller! It was a beautiful day yesterday, perfect for bringing out the new stroller and going for a jog. It took me a little while to get the hang of maneuvering it, but after a while we were pros! I can't wait to use it more this spring and summer. Thanks Aunt Nae and Uncle Boo!

Feeding Therapy

We had a great feeding therapy appointment yesterday in Kansas City. The dietician came in to talk about Carsten's diet and it was very productive. At first she acted a little concerned about him going to an intensive feeding clinic, finally I was getting upset and said, "why do you have a problem with that?" She explained that since he is on the GJ tube and Elecare (a VERY elemental broken down formula for your gut) she didn't know if his body could break down real food basically. I told her that he's eating all kinds of pureed food and sometimes I even give him sips of whole milk and he seems to do fine. I think that convinced her to try to switch him to a different formula. One that is broken down a little less than Elecare. Basically, in Elecare the amino acids are broken down for Carsten so his body doesn't have to do it. Now we are going to try Peptamin Jr. in which the amino acids are not broken down, but the next protein Peptides are broken down for him. I'm going to slowly transition over to the peptamin jr and see how it goes. I'm hopeful that he will tolerate it okay because 1) it will show us that his body can break it down and that he will have a better chance of breaking down real foods, and 2) it is a higher calorie so we can give him less ounces in a day and get off this night tube nightmare:)

She said we could do four feeds of 6 ounces a day with the peptamin. She also recommended giving him about 8 ounces of water a day through the tube when I told her his mouth was CHRONICALLY dry. One of my concerns about going back to day feedings into his stomach is that he ALWAYS threw up horribly the first feed in the day because of drainage. She said to try giving him some lukewarm water through the tube about 30 minutes before I feed him in the morning to get some of that gunk moving. Well I gave him some water this morning and so far, no gagging or puking! Also the peptamin is supposed to taste better than the Elecare so maybe he will try it more by mouth, we'll see.

So please pray a little prayer for Peptamin Jr that it would agree with Carsten's body:) I guess if he starts puking in the next week we'll know why and back to the good ole' night tuby:)

I just finished the book "In the Presence of My Enemies", wow! What a neat book. It's about this couple that were missionaries to the Philippines back before 9/11. You might remember them. They were abducted from a resort place on their anniversary by Philippino terrorists and the story is all about their capture and ransom. The wife makes it out but not the husband. They are actually from KC and the lady came to speak at our women's bible study a couple of weeks ago and I'm so sad I missed it but thankful my friend Coralee got the book for me. I read it in two nights, SO good! I love reading about missionaries! Anyway, I guess my point was that in the story the wife prayed about the tiniest little things, even that God would provide her a cheeseburger out there in the jungle, amazingly, he did! So, if she could pray for those things I know that I can pray for little things like Carsten tolerating this formula and He will hear my prayer. I think the most recent lessons the Lord is trying to teach me is persistence in prayer, it keeps coming up in my life as of late.

Matthew 21:22 "If you believe, you will receive whatever you ask for in prayer."

Mark 11:24 "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours."

Blessings,
Momma Bridges