Camping...Sort Of

One of the gazillion thoughts that popped into my head when I found out Camden had Ds was, "We will never get to go anywhere or do anything." I know it's silly, but I thought it. I was completely wrong. In fact, I'm planning more vacations and stuff to do for the year than I probably wouldn't have originally. One of the things we do every year is go camping for Memorial weekend. This is a tradition that started with my husband long before I came along, but now I get to be part of it. We used to do the "true camping" with tents and all. Over the last couple of years I have come to not love sleeping on the ground so much. Even with air mattresses, it's just not that comfortable. We had a camper for a couple of years, but we no longer have it now. Pout. I knew that a tent wasn't an option for me this year since I had Camden. Carter and Richard slept in the back of the truck with a camper on top. My mom, Camden and I slept in a hotel. Yep...a hotel. I know that's not real camping, but it sure was comfortable and the air conditioning was awesome! The hotel was about 15 minutes from our friend's place on the river so it wasn't so bad. We only stayed one night compared to the usual 3 because we just had so much to do. I hope next year we will be more settled and can do the full weekend. Each year as Carter gets older he starts to enjoy camping that much more. He had a blast! He could have stayed for days. As I get older I realize that it's all about seeing the kids happy. That's what I live for. It rained for half the day on Saturday, but it didn't phase us. The sun soon came out and it turned out to be a beautiful day. It was good food, good company, a beautiful atmosphere, and just a good time!

                                    He did not want to get out of that river!

                                            "Mom, stop taking pictures!"

        The lovely ladies that we are blessed to have in our lives!

  Daddy thinks he's all cool with his tank top and hat!

                   These two ran non stop!

We had Camden's six month check up on Wednesday and I was nervous about the weight issue. I just wanted that scale to show he gained something. Well...he did! The boy now weighs 13 lbs 5 oz. He gained 7 ounces since we saw the dietitian two weeks ago. It's slow weight gain, but it's a heck of a lot better than 5 ounces in a month! I guess the fortifying is working. He is also 25 and 1/2 inches long and overall is doing great. We got a referral to GI for the reflux issue and had to get labs drawn to check his thyroid. Thyroid issues are very common in kids with Ds so they are tested at birth, 6 months, 1 year and then annually after that. The office called me today and all the lab work looks good. He got three shots and we were all done. Unfortunately he has not been feeling well since the vaccinations so we had to reschedule our therapy session for today. Hopefully after today he will be good as new! 

        Oh son, you are smiling now. Just wait!

I'm a little worried about his hearing so I can't wait for his ENT appointment in June. He passed his newborn hearing screen, but that's not always indicative of hearing issues later on. He startles at loud noises so I know he can hear some, but if I rattle a toy by his ear or talk in it, he doesn't turn toward the sound. It's not like he doesn't do it sometimes, he never turns toward it lately. I want to get this figured out as quickly as I can as hearing is necessary for speech development. Hopefully it's just fluid or something simple, or it could be nothing at all. Maybe he just gets tired of listening to me!

Everyone Knows Best

L

I will admit that I am no expert when it comes to raising a child with Ds. We are only 6 months into this and we are constantly learning new things everyday. However, I do think that my smidgen of experience coupled with living this life gives me a leg up on those that have no clue. So why do people like to tell me what's best for Camden and what he won't do in the future? I guess these folks have crystal balls that I don't know about. For the most part people have been super supportive and very positive, but every once in a while a comment comes along that just gets under my skin. It doesn't help that I'm an overly sensitive person who cries at everything. This makes it so much worse. I never say anything in return because I honestly don't feel that these individuls are maliciously trying to say something rude. I think things just fly out of people's mouths before they think about it. I have been guilty of this numerous times. I seriously need to get some thicker skin because I know this will continue to be an issue for the rest of our lives. 

"He probably won't graduate from highschool."     Why not? Several...in fact a lot of individuals with Ds graduate from highschool and some continue on to a secondary education. I have no reason at this point to believe that Camden won't do the same. Honestly, I am just trying to survive the week and thinking about his teenage years is not on my mind right now. Have I thought about it? I absolutely have. It's just not something I want to worry about right now. I believe that Camden can do anything he sets his mind to. We will not limit him. Our expectations will be high just as they are for our other sons. All I can do as a mom is provide him with the tools, love and support he needs to thrive and flourish. 

"You will have to take care of him for the rest of your lives."   He is my son. If he needs to live with us and have us take care of him forever, then so be it. However, like I mentioned above, I have no reason to think this will be the case. Times are changing for those with Ds and I feel it will only continue to improve. Many adults with Ds are employed, live in group homes or with friends, and get married. If this is what is in the cards for Camden then that's awesome. If it's not, that will be awesome too. I'm the type of person who would want her kids to live with her for as long as possible because I would get empty nest syndrome. I know of several "normal" adults who live with their parents but we don't talk about that for some reason.

"I think your baby is sick. Why haven't you taken him to the doctor?" As much as I repeatedly say "he's not sick", it's not good enough. People must think I'm the world's worst mom because I take my "sick" baby out everywhere. I always get the looks. Folks, he just happens to be a snorter. Reflux combined with tiny nasal passages equals constant congestion. So when he sounds like a little piggy, I promise you he's not sick and I don't need to waste my time with a trip to the doctor. I do appreciate people's concerns, but I think I know my son. 

These are just a few of the things said to me recently. I could go on and on, but I think you get the point. I have learned after having Camden to never judge anyone or pretend that I'm an expert on other people's lives. I simply want to take care of my own family the best I can. 

Not So Chunky!

Ever since Camden was born at a whopping 3 lbs 5 ounces, I have always been concerned with his weight gain. I don't really know why since he has always shown me that there is nothing to worry about! Ever since he hit about 9 pounds a few months ago, he has never really taken in the average amount of ounces for his weight. He got up to about 20 ounces a day and has been there ever since. He really should be taking around 30. Anyhow, since he has always gained weight fabulously I stopped worrying about it so much. We had our first home visit with the dietitian from ECI last week. The plan was to meet with her once for an evaluation and then probably cross that service off our list. I was looking forward to the visit because I was curious to see how much Camden weighed since it had been a month. Well, he weighed in at 12 lbs 14 oz. That doesn't sound too bad, huh? Exactly a month ago he weighed 12 lbs 9 oz. He has only gained 5 ounces in a month's time. Sigh. I guess it's good that he gained and didn't lose. We did stop the thickening with rice and that took away 70-80 calories per day. The problem is that he still drinks the same amount and now does not get those extra calories. So, now we are fortifying his formula to 22 cal/ounce and trying to offer him at least three more ounces in the day. We also get the dietitian added to our plan now for monthly visits. We have our 6 month check up next week so hopefully he will show some increase in numbers on that scale!

We had a therapy session that same day and Camden seems to be doing really well! His head control is getting much better and he is able to bear weight on his arms while holding his chest and head up. It's great to see progress even if it is baby steps. We are still working on rolling back to front, but I'm in no hurry really (apparently neither is he). If you ask me again in a month I'm sure I'll say something different.

Saturday we attended the 3rd annual B-B Ranch Down syndrome Round Up that is put on by some folks from the DSPNT. This was great because it was in Weatherford and that's actually semi close to us. It was also great because one of my cyber sisters and now close friend was there as well. There were various activities for all the kids like pony rides, a petting zoo, hay rides, and much more. They also served us dinner and it was such a great opportunity to meet new people. I got to talk to a few moms who had babies around Camden's age as well as moms to older kids too. The one thing I remember most is watching several adolescents with Ds sitting at a table together interacting. They were laughing, talking and having such a good time. It really made my heart smile. I know it may sound silly to some, but it really gave me a lot of hope for Camden's future. 

                           Getting ready to go to the Ranch Round Up!

 

 

Oh, the poor chicken!

 

Carter definitely had the most fun!

 

Me and Stephie, and Camden hiding in my pouch.

 

I was thankful for Richard being able to entertain

Carter for the day!

 

We finally got Carter back in his bed! Ever since I went in the hospital back in November, he has always slept with someone. This continued until last week. There was so much going on for three months straight so we never pushed the issue. Then it became a habit. We finally decided we needed some normalcy back, so back in his bed he went. Richard was so kind enough to let me have the job of doing it the first night. The poor boy cried until he fell asleep, but fall asleep he did. Yay!

We have a camping trip and some more dr appts coming up the next couple of weeks. Other than that we are trying find some indoor things to do since it's so stinking hot! It's been over 100 degrees here the last few days and dry as a bone. We got about 6 drops of rain (slight exaggeration, but not much) when those storms came through last week. We are in a major drought and we desperately need rain. Our garden looks pathetic, our stock tanks are drying up, and the wheat crop won't hold on too long without some wetness. Please do your rain dances everyone! 

                      Camden is always happy on his mat!

 

 

                            Such a sweet face!

 

 

Carter helping daddy split wood in this insane heat!

 

 

Photo Bomb!

 

 

                      Working on holding my toys!

 

                           I just love sleeping babies!

 

                     Uh mom...what are you doing?!

 

            Concentrating really hard on my exercises!

 

We got to meet Chandra and her sweet Kennedy last week.

                 I think we bore Kenni to sleep. :)

 

            Carter gave me a rose for Mother's Day.

 

 

                     My sweet mom and Camden.

 

 

                        I just love his sweet smiles!

He was trying to hide from the camera.

 

Outdoor bubble fun!

 

 

 

Tractor fun with friends!

                     We have come a long way!!!!

                  Dressed for Splash Day at school!

                              Brothers!

Happy Mother's Day

My children are my joy in life. I love them with every fiber of my being. From the second I knew life was growing inside me the unconditional love was born. We are connected by something that's bigger than I can explain. This Mother's Day is different for me. It's not because I have a child with special needs...it's because of how that child has changed me into a different kind of mother. People tell me that my boys are lucky that God chose such a "special" mom for them. I have said it before...I'm just like any other mom. There is nothing "special" about me. I'm the lucky one. I have four AMAZING boys. My two stepsons accepted me into their lives and have shown me a kindness and love that touches me everyday. I have my two young boys that teach and show me how to be a better person. When we found out Camden had Ds I was scared to be his mother. I just knew I would fail him. How in the world could I ever do this? I thought I was the last person God should have chosen for this job. What kind of mom would I be for Carter if I'm taking care of his brother all the time? Today, my thoughts have shifted. I AM the best mother for these two boys. I was born to do this. They are by far my greatest accomplishments. I live and breathe for my sons. I am grateful to God for all that I have been given. I am truly blessed. 

Happy Mother's Day to all you mommies out there and to my mom who has helped shape me into the person I am today. I love you!

God's Helpers

God could not be in every place 

With loving hands to help erase 

The teardrops from each baby's face, 

And so He thought of mother. 

He could not send us here alone 

And leave us to a fate unknown; 

Without providing for His own, 

The outstretched arms of mother. 

God could not watch us night and day 

And kneel beside our crib to pray, 

Or kiss our little aches away; 

And so He sent us mother. 

And when our childhood days began, 

He simply could not take command. 

That's why He placed our tiny hand 

Securely into mother's. 

The days of youth slipped quickly by, 

Life's sun rose higher in the sky. 

Full grown were we, yet ever nigh 

To love us still, was mother. 

And when life's span of years shall end, 

I know that God will gladly send, 

To welcome home her child again, 

That ever-faithful mother.

--George W. Wiseman

"I wore a tie"

Dad here...

For years and years I wore a tie; and I have a son with Down syndrome. I worked in the Corporate world and the tie seemed to command presence, respect, acknowledgement. When going into public places, people seemed to be friendly and smile. I suppose the tie gave the perception of success.

I now am self employed, dirty and if lucky wear a $2 shirt; and I have a son with Down syndrome. The same public places I venture now get different glances; glances with frowns, glances of non acknowledgement and shuns. Can you imagine a child a little different, a little special, and the looks they get?

As I age, I have learned looks and perception mean very little to me. What is important is Salvation, Family and Friends. I too years ago would probably have viewed Down syndrome a little differently. After all, I wore a tie, I have three older sons whom excel, whom stand out in a lot of ways, a lot like the tie.

Now, with my "dirty shirt", I cannot express the feelings I get staring into the eyes of my son with Down syndrome. The innocence, the good looks, the smile. I have learned packages come in many shapes and sizes, and what a blessing it is to have this child! I see children now with a "specialty" and instantly a smile comes to my face.

I wouldn't change a thing. Down syndrome is a blessing. God always has a purpose, even though sometimes we don't know exactly what it is. In the Bible, time and again the "special package" is always the stand out. John the Baptist wore a Burlap sack; King David was a runt; Jesus hung with sinners. I view Down syndrome as I do that tie, that the looks and the perception mean very little. Its whats inside that matters. And by the way, if you need any ties, please feel free to email.

Pretty Great Week

It's amazing how much you start to enjoy your day when you stop stressing about every little thing. I kind of took a mental health break from all the medical junk and just soaked up family and friend time this last week. Last Sunday the boys and I got to hang out with Heather and her girls. Heather has been one of my best friends for over 20 years now and we haven't really had time to see each other for the last few months. We did breakfast at IHop and then took a walk through the Botanic Gardens. It was a nice day and excellent company!

 

 

 

 

 

Monday we had our first evaluation from the physical therapist. I will say it actually went pretty good. Ms. Marcia gave us some exercises to work on to help Camden start noticing his feet. He doesn't really know they are there yet, so we play with his feet and try to get him to grab his feet as well. It's something we can do while doing diaper changes so it's not really like "work". We are also focusing on getting him to roll both directions. He is rolling front to back still, but has not rolled back to front. So, that is something that we will work toward. His head control is definitely getting better, but he still bobbles it from time to time. In the beginning the one thing that was drilled into my brain was "tummy time...tummy time...tummy time". I will admit that we probably have not done as much tummy time as we should, but we are getting better. Most days I just find snuggling much more fun! She said she was pretty impressed with his tone and thought he was doing great. She thinks being a preemie helps him because preemies tend to have higher tone than typical babies. I guess the higher tone in certain areas helps to balance the low tone. This is pretty evident in his arms and legs, but the low tone does show in his neck and core. PT will come out once a month which doesn't seem like a lot, but she said that our SST will work on these same exercises too when she comes. Still waiting to hear from OT. Grrrrrrr...

 

 

This is a chart I found online that shows the range in which kiddos with Ds hit their milestones.

 

 

 



Monday afternoon we had a repeat swallow study. I'm happy to report that Camden has been cleared for thin liquids!!! Yay!!! I was pretty surprised by this, and I think that the SLP was too. He was so funny during the study because he would not stop smiling. There were about 5 people in the room and I guess he liked all the attention. When I would put the bottle in his mouth he wouldn't eat because he was grinning ear to ear. I wish I would have had a video camera. It was cute, but I really wanted to get it over with quickly so there wasn't a lot of exposure to the radiation. We eventually got what we needed and his smiles left everyone in a good mood.
It's amazing how much he has grown from the last one. He didn't even fit in the seat the first time and we had to roll up blankets to put behind him and beside him to keep him upright. This time he fit perfectly. My little baby boy is getting so big!

 

 

 

Even Camden was excited that he passed!

 

 

 



I'm not sure if these were for Carter to play with, but he sure did have a grand ol time building a fort out of them. I actually think they were little seats for the waiting area.

Thursday we went to Rylie's scholarship ceremony. He is a senior in high school and will be attending college this fall. Various places around Mineral Wells award scholarships of different amounts to students of their choice that filled out applications. He was awarded 3 scholarships and we couldn't be more proud! It's hard to believe my stepson will be 18 in a couple of days! Carter was super excited to spend time with his big bubba (even though he talked and laughed during much of the ceremony).

Friday we met my mom at Chuck E. Cheese so Carter could play some games. He loves that place! I was also so excited to get some Camden smiles on camera! Every time I pull out the camera he stops smiling. I got some good ones though. I apologize to all of you who saw this picture on facebook, but I love it!

All in all it was a great week and I anticipate more great weeks to come! Now that we are heading into spring/summer (though I don't think Texas weather got the memo) there will be tons of fun to be had!We do have a busy couple of months ahead filled with doctor's appointments and therapy, but I have come to accept that it is part of our new "normal".

Hope everyone had a great weekend!