What to do now?

"I don't need to see him for six months."

What? Really?! I'm starting to dig this come back in 6 months thing! Camden had an appt with GI yesterday and apparently Dr. C is pleased enough with his progress that we don't need to go back for a while. We also get to stop weight checks. Yay! He only gained two ounces in the last two weeks but Dr. C said that the overall picture looks really great. He said he looks healthy and that he's not concerned a bit right now. He said if I felt there was a problem and he wasn't gaining weight then I could come on in, but for now he's happy. You don't have to tell me twice! We pretty much left it at that and hopefully we won't see him until next year. We are going to try Miralax out for his pooping (or lack there of) issues. We've tried alternative measures but they don't seem to be working. When the plumbing is backed up, it just makes his reflux much worse. So, we will try this to see if it helps. The best part of the appointment was when we were leaving and walking through the clinic and Carter busts out singing "you know you want it...you know you want it...you know you want it". I don't think all the parents were impressed with his choice of lyrics. Hey, I can't help it if "Blurred Lines" is on everywhere. We did eventually have a discussion it, but it was kind of humorous at the time.

Camden also had his follow up with the ENT to check to see if there was still fluid in his ears. There was indeed fluid in the left ear but the right looked great. Dr. V does not want to do tubes this young because he says they usually fall out and he will just have to put them right back in. He wants to check again in two months and if there is still fluid we will schedule for him to get tubes. Works for me! 

      Happy about all the great news!

         Trooper as always!

  

After getting home yesterday and looking at the calendar I realized that Camden only has three more appts the rest of the year. I had to do a double take. One of those is the ENT and the others are well child checks. I can't tell you how great this feels! The past nine months have been non stop craziness it seems. People told me the first year is the worst and I can totally see why. The beginning was dealing with the NICU stay and emotions. Then came all the doctors and emotions. Next were more doctors, therapy and continued emotions. Now everything has settled and it all feels "normal". I know we have been so blessed with Camden's health and I thank God every day for that. Some of Camden's friends have had less medical issues than him, but there are several that had are have complex ones. We pray for them daily and sometimes I feel guilty that Camden is in pretty good health. I don't know what his future holds but I'm so thankful that everything has slowed down and is so good right now. I feel like we can finally breathe.

What to do now? I'm so used to going 100 miles an hour and now we are just cruising. I love it!

     I guess we have time for Baby Signing Time now!

         He was only interested for about 5 minutes.

"Turn it Off"

I know just enough about genetic harvesting, genetic manipulation, genetic re-structuring to write an opinion about what I do know about : My son with "Down Syndrome". Folks mention to me, "hey, they (which I always wonder who "they" are) are experimenting on reworking the extra Chromosome", in essence changing my baby into a "Normal Baby". So, for lack of a better spin on things, turning off down syndrome.

Well, who said I am interested? Who said I want to change my son into one of us, a "normal" human being? One who is born into this world innocent and then at an age of accountability (in which mine occurred soon) has sin come pouring in! Us "normal folks" are good at the sin thing. But, my son and his future is innocence, purity, happiness, lack of judging, all the good things which come natural to him and "them" and come so hard for us?

All of us have forgiveness through Jesus, none of us "normal" folks deserving it. I have a strange opinion to some, but I think these "angels" drop through the cracks of heaven and fall into the homes of us lucky ones!

So, in summary, I am not going to get into Genetics, as I know can have some mixed responses. What I am going to end with is this: Maybe instead of our society wanting to "turn it off" as far as with Down Syndrome, maybe we all should learn from them and "turn ON" their good qualities in all of us!!!

EDIT: This was written by dad.  I'm not that good.  ;)

The Pit

After I learned of Camden's extra chromosome a pit formed in my stomach. It's that feeling of nervousness like your going to throw up. I'm sure many of you have felt this "pit" before. You can't really eat, sleep or do much of anything. Feeling like you want to puke all day long everyday kind of stinks. I hated going to sleep at night because I dreaded waking up with that feeling. Each day started the same. I would wake up and instantly I felt sick. This misery lasted all day until the cycle would repeat itself the following day. I honestly thought that it would never go away. I couldn't focus on anything. I was just going through the motions day in and day out. It was so so hard when Richard would come and see us because I could not enjoy the things that he was. He was genuinely happy and all I could do was put on a fake smile and try to hold a decent conversation. Even when we were finally home, I still woke up every single day with that pit in my stomach. This probably lasted for a good 5 months. Right around Camden's six month mark things started to change. I know I've mentioned it in some of my posts, but I started to enjoy life again. I started to enjoy my son. It was an amazing feeling. There were days I would wake up and that feeling was gone. There were still a couple days out of the week when "the pit" would return. I wrote about those days too. They were easier to get through because I knew the next day would most likely bring joy. This is when started to realize things were going to be really great. 

The reason why I'm writing about this today is because I woke up with that feeling a couple of days ago. It sucked. I felt nervous, anxious, sad, sick and every other miserable feeling you can think of. I started to worry about the future again. I was down about all the milestones he is not meeting. I was sad about the whole Down syndrome thing in general. I know these days will still come and I know they will really hit me hard when they do. What I really want to tell everyone is that I can't remember the last time I felt that way. Has it been weeks? A month maybe? All I know is that it's been a while. That to me just shows that I'm continuing to grow and that I'm going to be just fine. We are all actually happier than we have ever been. I never thought in a million years back in November that I would be in such a good place emotionally. I still know I have not come to full acceptance of all this, but dang it I'm a lot closer than I used to be and it feels really good. I'm realizing more each day how I blessed I am. 

Happy Dance

It feels so great to walk out of the doctor's office smiling and feeling pretty darn great. Yesterday was that day. None of Camden's appointments are really bad, but they are nothing to get super excited over either. He had his usual cardiology follow up with an echo. I have made it known before that I get pretty anxious before these appointments. It's the get sick to your stomach kind of feeling. I think it will always be this way until that dang hole closes up. It started off with the weight check like always. You are not going to believe this, but the boy has gained a whole pound in the last 2 weeks! This is big time news for us! I did my little dance with a huge grin on my face. He now weighs 15 lbs 8 oz. I didn't think we were ever going to get to that 15 pound mark, but we did it. I'm going to go ahead and pat myself on the back for this one. I have been working really hard the last couple of weeks to up his milk intake and get more calories into him while trying to keep his reflux at bay. Apparently I'm finally doing something right. Yep...I'm proud of myself. Oh yea, I'm proud of Camden too! 

Then it was time for the echo. I'm always praying inside my head that Dr. C is going to tell me that the hole is getting smaller. I want to go ahead and say how much I love Dr. C. He will sit in on every single echo with us and explain in detail what is going on. I never have to wait for results or a phone call. He is awesome. Anyhow, the older Camden gets the harder it is to keep him still. He doesn't get mad, he just wants to move. Basically the echo showed that the hole is still the same size with the tissue still covering part of the hole. It's still a large VSD but the tissue makes it actually moderate in size. I was kind of bummed because I was hoping it was a little smaller. He did explain that it can take a couple of years for this size hole to close and he still feels that it will. He mentioned that the closing can stall sometimes and a small hole will remain and at that time you have to determine if it's too risky to leave it open or to go ahead and close it. He told me not to even worry about that right now because we have plenty of time. There is still a good amount of shunting of blood going on between the ventricles but it does not seem to cause any problems at this time. All of his pressures in the heart and lungs look good. Dr. C said his only concern was RSV season. The VSD coupled with RSV would most likely land him in the hospital and some kiddos end up on a ventilator. Yikes! Now, I already knew this, but it sure does sound a lot scarier when someone else says it! I think we are going to have to keep the boy on lock down from November until March. He did get sick a few times last winter but did not get RSV and we were always able to manage it at home. We will just pray and hope that he stays healthy this winter. So for now we are still in a wait and watch approach with this and we don't have to go back for five whole months! This appointment was nothing but good news (well, other than that stinking hole still being there). We were all very excited and I'm still doing the happy dance!

      No big smiles in this picture!

    Look very closely. Those are actually 

         small fatty rolls on his arms!

      I thought I would let him drive 

               for a change!

Vacay!

Several people asked me why we would choose Chicago for vacation. The main reason was the opportunity to meet several of the moms and their little ones from my Rockin Moms online group and the other because we haven't seen that part of the country. I'm glad we went because we really enjoyed the city! We stayed in the suburbs about 45 minutes outside of downtown. There is so much to do there. There was no way we could have fit everything in the few days that we were there. We tried to do as much as we could though. We spent a day in Milwaukee since it was only about an hour and a half away. We took a boat tour out on Lake Michigan which was gorgeous. Sure we have lakes all around us, but they don't compare to one of the Great Lakes. Saturday was the day we got to meet our new friends in person. We first met at GiGi's playhouse which is a Down syndrome awareness and educational center. There are quite a few around the Midwest area and now even in Mexico. We attended a crawler's class where they were showing parents techniques and exercises to assist with strength and crawling. This was actually pretty informational. They showed me things I never even knew to do with Camden. Afterwards we all met up for lunch at the Rainforest Cafe. We had our own private room which was really nice. I got to snuggle and love on the babies that I've been seeing in pictures for the last six months. Carter had a blast with all the siblings, especially G. These ladies are absolutely amazing! I feel like I have known them forever now. I wish all the moms in our online clan could have been there. It was truly something very special. One of the moms lives in the area so she was kind enough to invite us over for dinner. This gave some of us some more time together and we had so much fun. I was sad to say goodbye but so very thankful for the wonderful experience! The next two days we spent downtown trying to see everything we could. The weather was amazing. All my fellow Texans would be jealous. It was high 70's to low 80's! It's not usually that cool there in August, so we just got really lucky! We went to museums, hung out at Millenium Park, took a trolley tour, and so much more. Chicago is beautiful! I thought Downtown Dallas was big, but it doesn't have anything on Chicago. I could talk about this vacation forever, but I think I'll just photo bomb you instead!

On our way! He did so good in the car!

It was a looooong drive.

Our first night in the hotel.

You know you're getting old when you end 

up back at the hotel by 8 pm every night!

Touring Lake Michigan.

I loved that we were able to spend so much

time outside!

On the Riverwalk in Milwaukee.

Hangin with the frog.

I think he was a little tired of smiling for

the camera!

One of the awesome Jenny's (there were 3)

and baby N.

Carter loved B! They were playing and 

chasing each other all over the place!

My amazing cyber sisters and their precious babes. Thank you Jenny J for creating something

so amazing!

Having dude conversations at the barbecue.

Thank you again Angela! 

Camden was smart...he was chatting up baby G.

Major cuteness on a blanket!

Carter and G chillin on the hammock.

Soldier Field was on our way to the museum.

Carter picked the Field Museum because of the dinosaurs. This place is HUGE! It would

take days to actually see everything!

Playing a little froggy music.

Navy Pier was really fun. It's a pier about a mile long on Lake Michigan and is full of shops,

rides, boats and restaurants. 

Millenium Park is a must see if you're ever

in this city!

They have these big wall fountains in the park

that people can play in. We had no idea so we 

didn't bring Carter a swimsuit, but it didn't stop him!

He only fell and busted his head once. This

is good. Really...it is if you knew how clumsy 

this boy is.

The silver bean. I think that's what it is called? Anyhow...pretty cool.

Under the bean.

We stopped by a couple of malls downtown.

 I swear there are about 100 of them!

The coolest thing of all...Camden did some

tripod sitting on his own for the first time! He 

could only do it for a second or two before this

trip. On our last day he sat like this for several 

minutes at a time with no help! Yay Camden!

 

Pancakes!

This past week has been so busy but pretty awesome. In fact, it's been one of the best weeks in a really long time. I think once I decided to let myself breathe and enjoy life again, my eyes were opened up to the beauty of each day.

We had a couple of therapy sessions this week with one of those being with an occupational therapist. They finally made it out to do their evaluation after fighting with it for about five months now. After she did her evaluation she showed me a few exercises to start helping him more with reaching for and grasping objects. We also talked about oral motor exercises that we could start doing to help with speech. She said he was doing really great overall. She also said she was very suprised at how well he is doing. What does that mean exactly? I'm not sure what she was expecting when she came over. I'm sure it was meant as a compliment, but a part of me was kind of irritated. I think it's because I feel like just because he has Ds he is expected to not be able to do things and will always be underestimated. Maybe I'm not making any sense. Anyhow, she said they will start coming out twice a month for now which is great.

The highlight of our week was getting to spend some time with my good friend Jess and her new baby boy O. We have been friends for several years now and a couple of years ago she decided to leave me and move to Australia with her new hubby. Pout. I haven't seen her since she left and this is the first time she was able to make it back here for a visit. As excited as I was about metting baby O, I was a little bit anxious as well. I haven't really had Camden around any typically developing babies close to his age lately so I haven't had to do the whole comparison game. I didn't want to get down about all the things Camden wasn't able to do yet and ruin our visit. Surprisingly, it did not phase me a bit! I think I was so excited to meet this sweet boy that it didn't matter at all. I was just so happy to see these two boys playing (well maybe just hanging out) together.

Having dude conversations.

Even though he was surrounded by babies 

he still had a great time!

I can't wait for this girl to move back!

We also had another weight check this week. I don't know if I wrote about the last one but Camden was 14 lbs 11 oz two weeks ago. We had gotten to a point where he was consistently gaining about four to five ounces a week so we let out a sigh of relief and felt pretty proud of ourselves for getting him back on track. Well, this week I just had that "feeling" that the scale was not going to show us what we wanted. I actually thought he may have lost weight. Apparently my gut feeling was right because he was only 14 lbs 8 oz. He did lose three ounces. Again, I was very suprised at myself because I did not get upset. Maybe it was because I was already expecting it, or maybe it's because I'm just getting a bit better about all of this. I figure if it's just one set back then we can handle that. If he continues to lose weight then we have a bigger problem. We won't even worry about that right now. The pediatrician suggested that we up his milk intake during the day and I just kind of chuckled inside. People just don't realize how hard it is to get the milk in him that we do and him stay comfortable after. He basically said since there were so many people following this issue that he would just let the GI doctor let me know what he wants us to do. We have not talked to them yet and right now I don't think there is much to do besdies what we are already doing. We are now adding coconut oil to his baby foods to increase calories so hopefully that will help.

The boy loves pancakes! He had his first table food a couple of days ago. Now, I know a lot of you already have already heard this story and seen the picture, so I'm sorry for the repeat. I honestly haven't tried to give him anything other than purees because we had just started solids. I wanted to wait until he was eating a little bit more baby food before moving on to something more. He kept eye balling Carter's pancakes at breasfast the other day. He would watch Carter as he put each bite into his mouth. So, I thought I would let him try. Oh my gosh! That boy gobbled up that pancake like nobody's business! I think the boy loves him some real food! This is good because now I can incorporate more foods into his diet and maybe that will help with the weight issue as well. I was so excited because I know feeding issues are common with kiddos with Ds. This is not to say there won't be issues later, but for now it's seems that all is good in the food department.

He was so excited and mama was so proud!

That pretty much sums up our week we had. This week we go on vacation and we are all excited beyond words. We need this! I'm even more excited that I'm meeting some of my cyber sisters and Camden's cyber buds. There will be many pictures to come!