A Nice Break

We've been on a nice little break from almost everything. I took a couple of weeks off from all social media because I felt like it was consuming me. I cancelled all therapy appointments the past month because I was either dreading them or getting depressed after. I mentioned I was in a funk in my last post and that funk went on longer than expected. That was when I decided I just needed to recharge and it absolutely helped. I think my boys were grateful too. 

We went to Fredericksburg (which is down in the hill country part of Texas) a couple of weeks ago for a few days. We usually try to go once a year. It's a cute little town with lots of wineries, shops, and beautiful scenery. This little vacation was much needed by the whole family. 

Here are a couple of the spring pictures we had done of the boys. The best pics were when they weren't looking. Carter does this weird fake smile now and Camden just stares at you like you're nuts when you are trying your hardest to make him smile.

Easter was great despite the gloomy weather. The egg hunt ended just before the storm hit. We got to see Rylie, but Ryan couldn't come this time. Carter loves spending time with his big bubbas. It's nice to watch their relationship grow as he gets older. The boys got to spend time with their Uncle Tommy and soon to be Aunt Amy too. 

We have been able to spend a lot of time outside lately and I'm loving it! This time of year is perfect. Once June hits we start with the 100+ degree temperatures and it's steamy hot.

The great thing about this little break was that Camden's skills really started to come on like crazy. He's done more new things these past few weeks than he's done in months. A lot of them were little things that we've been waiting forever for him to do. He did this before a while back. Once I backed off and took a break from things, he would bust out a new skill. I think he can feel the stress and frustration from me at times. I promise to write all about it in my next post. I will say that he definitely moves now. He's not crawling or scooting, but he has his own crazy way of getting around. There is no more of sitting him down somewhere and expecting him to stay there! 

It was a good break!

Brothers

I've been in a bit of a funk lately. Every time I sat down to write, I couldn't think of anything positive to say. My posts aren't always rainbows and sunshine, but I just really didn't want to write another negative post on the same subject matter. I have been able to accept that Camden will do things on his own time, but some days it just gets to me. When I see that he isn't reaching certain milestones yet, it stings a bit. You've heard me harp on this subject before and that's why I didn't want to write about it again. So, I've been trying to shift my mind to positive things these past couple of weeks and just couldn't seem to do it...until the other day.

I was watching Carter and Camden playing together the other night and it brought tears to my eyes. They play together every day so this wasn't something new. I got a little emotional because I started thinking back to Camden's birth and about all the crazy thoughts that swirled through my mind. I've said before that I was devastated at first. I wasn't just devastated for me though, I was hurting for Carter as well. I felt like I let him down. I thought I messed up and didn't give him the perfect brother that he deserved. I worried constantly about what kind of life Carter would have. He has his two older brothers and he adores them both, but the age gap is so wide and he doesn't get to see them much. I was so excited that he was going to have a little brother that he could play with, wrestle with, argue with, laugh with, and do all of the other things that siblings get to do together. After Camden was born I thought that dream had died. I really thought Camden would be a burden to his older brother. I thought that they would not get to play like brothers do. I didn't want Carter to resent Camden. I only wanted him to love Camden with his whole heart. I know now that these thoughts are silly and even a bit crazy, but that's honestly what I felt for a very long time. From the beginning Carter has been very protective of Camden. He would always check on him and comfort him if needed. Carter came to every doctor's appointment without complaints. Sure he got a little jealous at times, but I think all siblings probably go through that. As Camden has gotten a little older, the bond continues to grow stronger between these two boys. They get mad at each other like siblings do. Carter takes Camden's toys and makes him scream until he gets it back. Camden makes Carter mad when he pulls his hair. They laugh together every day. No one can make Camden laugh so loud as much as Carter can. They make each other smile. Carter holds Camden on his lap every evening and bounces him until they both get tired. Carter teaches Camden sign language and reads to him. The bond between these two is indescribable and it brings my heart so much joy. Carter does not see him as different. He doesn't understand that he has Down syndrome. We have tried to talk about it and his response is always "he's just a baby, that's why he can't do that yet." He thinks all babies have Ds. I know this will change one day as they both get older, but the unconditional love between these two brothers will remain the same.

    

 

 

 

Why I Do It

Since Camden was born I have tried to advocate and spread awareness when I can. All of my friends with little ones with Ds try to do this. Many of them have said that friends and family members get annoyed or tired of all the "Ds posts" on Facebook or wherever. I have had a couple of people hint at that to me as well. I know my friends and family have accepted Camden right from the start. They love him and support him no matter what. They do not see him as different. He has been accepted and included in all things. They don't need to see all of my posts on social media because they get it and I love them for that. Not everyone out there feels this way though. There are still misconceptions, ignorance and hate. Camden will not be accepted by everyone. People may (probably will) make fun of him, call him names, not include him, and see him as different. That is like a knife to my heart. This is the problem. A problem that myself and many others are trying to change. This is why you may see lots of posts on Ds. This is why I ask you to sign and share things that are important to me such as the ABLE act. This is why I ask you to stop using the "r" word. It's not because I'm too sensitive, it's because it's offensive and hateful. I am passionate about advocating. That will never change. In fact, I want to do more (and I will) but I just haven't had the time. So, I will continue to promote awareness and to advocate every single day of my life until Camden has a voice and can do these things for himself. Simply put, this is why I do it.

A Day In The Life

For World Down Syndrome Day I'm participating in a blog hop that shows you what "a day in the life" is like.

I'm glad I didn't have to write this post a year ago because I'm certain it would look much different than this one. At the beginning of last year my day was filled with grief, worry, stress, doctors appointments and lots of feeding issues. We have all come a long way in just a short year. Yes our lives are still busy, but I don't know of anyone who has kids that will say that they aren't busy. I would say the majority of the time our day is probably pretty comparable to a day of anyone else. Every now and then will have a day filled with lots of appointments and that can make for a hectic day, but those days are now few and far between. If I'm going to be honest, my four year old keeps me much busier and is more of a challenge than Camden is right now. Our days are no longer centered around Camden and Down syndrome. Actually, we don't think about Down syndrome most days. Here is a little glimpse of what a typical day looks like in our house.

I usually wake up between 7 and 7:30 and that's only because Carter wakes up around then. Camden will sleep till 8 or 8:30 at times. Once Carter wakes up the first thing that is out of his mouth is "Mommy I'm hungry." "Mommy I need a drink." "Mommy turn on my show." Then Camden wakes up and gets a bottle and some breakfast. Then I will get everybody dressed for the day. Now if I'm feeling extra lazy and we're not leaving the house, some days nobody gets dressed and we're in our pajamas all day.

Usually around 10 some sort of therapist comes over to work with Camden and if not then I usually work with him. During this whole time Carter continues to say "mommy I'm hungry" or "I want something to eat" over and over and over again. He is like a bottomless pit. He never stops eating. He is going to eat us out of house and home. I'm not sure what he will do when he stats school this fall and won't be able to eat every second of the day. He will think he's starving to death! After we are done playing or doing therapy, I usually turn on "Baby Signing Time" for Camden so I can do a little bit of housework. Camden loves this part of the day because he loves his videos and he will just sit there quietly mesmerized by it.  Carter on the other hand is usually running through the house being destructive and doing what boys do. I think you can already tell who keeps this mom the busiest of the two. Then it's usually lunchtime and we all three sit down and eat lunch and then I put Camden down for a nap around 1:00. At this point I would love to just lay down and take a nap myself or maybe get caught up on some reading. That would be ideal. However, I have a four year old that does not believe in naps anymore and does not even believe in quiet time either. So, I usually spend this time doing something with Carter to try and keep him entertained.

Camden then wakes up around 4:00 (yep he takes a three hour nap which is awesome) and then I usually give them a snack. After snack time I may do some therapy exercises with Camden but let's be real, that doesn't happen very often. The weather has been so nice lately that we are usually outside playing in the afternoon.

Carter is still saying "I'm hungry" and eating whatever else is left to eat. Around 6 pm it's time to fix dinner, we eat, and then we are all in the living room together either playing or watching TV. Again, during this time Carter is still running around the house being destructive and saying "mommy I'm hungry." Bath time comes next and then we get ready for bed. We read a book, we say our prayers, and we go to sleep. That's it. Sounds like an average day, huh? It may sound boring even. Not every single day is like this of course. 

Some days we go shopping.

Somedays we have playdates and hang out with friends.

Some days we just go out and do whatever!

As you can see though, a day in our life is pretty typical. Now, I don't know that I will be able to say this a year from now or 10 years from now. What I can say today without a doubt is that we are beyond blessed and are happier than we could possibly imagine!

 

 

15 Months

I didn't realize it's been almost 3 weeks since I've written here. I always start to and then I get easily distracted and forget to come back to it. Camden is 15 months old now and I figured it's time for a little update on development.

It is no secret that gross motor is definitely not Camden's strength. He is in no hurry to get anywhere. He is very much the observer. He will study your face when you talk to him. He will watch big brother run around and just laugh. If something is out of his reach he will try a couple of times to get it and then just give up. His therapists ask me what we could use to motivate him to move and I always say if they figure it out to please let me know! He has always been on his own time table and when he's ready to do it, he will do it. It used to get me down to see him so behind his peers. He's even behind a lot of his peers with Ds. I have learned to have a lot of patience when it comes to this kind of stuff, and it doesn't bother me as much anymore. It makes his accomplishments that much sweeter. 

One thing we have been working on for several months is getting into a sitting position on his own. I used to have to put him into sitting if he wanted to sit, but not anymore! He can now push himself up to a sitting position from laying on his belly. I really thought it would be a while longer before he did this, but he surprised us one day by doing it all on his own randomly. We were so proud of him and he was extremely proud of himself too! I know most of you have seen this video, but here he is the first day he learned how to do it. It took a while at first, but now he's a pro!

So, now the problem is crawling. We have also been working on this for a couple of months. If he is on his stomach he automatically pops up into a sitting position now within a few seconds. I'm not sure how to keep him on his hands and knees to work on crawling. Before sitting, he would get on all fours and rock back and forth. He never really moved anywhere except backwards a few times. He doesn't attempt to army crawl, or do any type of crawling yet. He is definitely behind in this department. At least I don't have to chase him around!

We are also working on standing and pulling up to stand. I don't think we are anywhere close to this skill. He will stand with support but lately he only does it for brief periods and then wants to sit down. He used to be able to stand for longer periods and he actually loved to stand, so I'm not sure why he is not wanting to do it much anymore.

Occupational therapy started coming out about a month ago and they will see Camden twice a month. She has been working on fine motor skills with him because he's been struggling with this as well. His coordination has gotten a lot better the past couple of months and that has helped with fine motor. We've been working on picking up objects and placing them in a container. I know that probably seems like a simple skill, but it takes work and practice for Camden. He can do it most of the time, but he gets bored and frustrated with this game quickly. He also does not know how to use the pincer grasp (using thumb and index finger to pick up things) so we are working on that too. I need some tips if anyone has any on how to improve this skill. 

Speech has definitely improved since Camden got tubes put in. He babbles non stop at times. He's added more sounds to his vocabulary such as da da da, na na na, la la la, ba ba ba and a few more. Most of the time his noises are either yelling or jibberish, but it's nice to hear him vocalize. We don't have many real words yet. He says "ma ma" and "bu bu" (for Carter) and that's about it. I think he tries to say milk but it's really hard to tell. When he sees milk he always makes a "meh" sound, so I'm not sure. He is not signing yet either, but we are practicing every day. I know repetition is key, but sometimes I feel like it's not working. I'm sure he'll surprise me soon! One thing is for sure, he could watch "Baby Signing Time" for hours if you let him!

He's been doing really good with the straw cup, although he pretty much refuses to hold it on his own. If he grabs it he just flings it around. If I hold it he will go to town and drink up. We are down to two bottles a day and using a cup for the rest. He's not really into feeding himself either. I believe he can do it, but he would rather hold his mouth open and have you do it. He doesn't pick up finger foods to feed himself at all. He will throw them down or feed the dog. He will hold a baby cookie or cracker and eat that, but eventually throws that down too. I don't know if it's a behavioral issue or if he simply just wants us to feed him. Grrrr...this one frustrates me.

At his 15 month appointment he weighed in at 17 lbs 12 oz and was 28 3/4 inches long. He's still a little peanut, but he's on his own curve and no one is concerned about it, so I'm not either. I have no idea where he is on growth charts because I honestly don't care. It really doesn't matter right now. All in all he's doing great and we will keep doing what we are doing!

On World Down Syndrome Day (3/21) we will be celebrating the launch of our new DSDN website! Our goal is to provide information to families and a system of connection and support in a time that may seem incredibly difficult. Many of my rockin mom friends have been working very hard on this project and we are so excited to share it with everyone! This is a resource that could be incredibly helpful to others. Please go to the DSDN Facebook page and "like" our page and feel free to share! We are so close to 2,000 likes!

"Ma Ma"

Sheesh...it's been a long week! Camden was admitted to the hospital last Saturday night for Bronchiolitis (a respiratory virus) and was finally discharged Thursday afternoon. I definitely was not expecting to stay that long. Actually, I really didn't think we would stay at all until we were at the ER and I saw how bad he was. He has been sick since the Thursday before Valentine's day with his usual respiratory funk. This happens a few times a year and he's usually over it in 3-5 days. This one was slightly different from the beginning because he was running a fever. He never has fevers. He had his first one a few weeks ago. Still, I thought it was no big deal. As long as we can keep the fevers down, keep him hydrated, and do breathing treatments, we are good. I think as a nurse (I'm sure a lot of my nurse friends would agree with me) I tend to sit on things longer than I probably should. I always say "eh...you'll be fine". When I got home from work Saturday evening I could tell that things were not so fine. He had a 103.8 temp, labored breathing, and just looked terrible. I tried my best to fix it. I gave some Tylenol and a breathing treatment and rocked him gently to try and console him. A half hour later he didn't look better. He was lethargic and in distress. I still debated on whether I should take him in. My mommy instincts kicked in and told me to take him to the ER. Now I feel guilty for waiting so long. I'm definitely not winning any mom of the year awards this time around! I must say that they did a fantastic job in the ER prioritizing the kids. Someone is there to immediately assess your child right when you walk in and then they are put on a list according to the severity of their illness. We didn't sit down one minute before they took us back. As soon as I saw that his oxygen saturation was 83% I knew we were staying for good. It took 4 hours to get his temperature down (which had risen to 104 at that point). The boy was absolutely beyond miserable and it broke my heart.

He honestly felt as bad as he looked here.

Each day was filled with breathing treatments, a few more fevers, lots of cuddles, and tons of tears. It didn't help that I was sick too. Camden was so exhausted day after day and was extremely emotional. I could maybe get him to calm down twice a day for a few minutes at a time in his own bed. Other than that, he was in my lap holding on tight or sleeping. He did attempt to play once and even gave me one smile. Yep...just one whole smile while we were there. He usually flashes that big grin at least 20 times a day and usually more. It was pretty sad.

This was pretty much his expression every day.

Out of his 6 breathing treatments a day, I had to physically pin him down while was screaming and thrashing for 4-5 of them. It was not fun for either of us and I wouldn't let anyone else hold him down. I was relieved when he would sleep through at least one of them. He wasn't able to come off oxygen until Wednesday afternoon and that's why he had to stay so long. Once Thursday came I could not be more ready to get out of there. Everyone was absolutely wonderful but there is no place like home and my baby boy needed to get out. We are not sure why this illness was so bad because he has had bronchiolitis a few times before with minimal problems. He was taken off Lasix last month and we are wondering if that may be a factor or it could be that this one just simply kicked his booty. Either way, he is home and doing great. Let's hope winter bugs are gone from this household for good!

Had to play with the CPT stuff before we left!

What I really wanted to tell everyone is that we are sure Camden has his first word. That wonderful little word would be "ma ma". He's been babbling so much more since his tubes were put in and he's been saying "ma ma" for a month now. I assumed it was part of his random sounds, but Richard thought he was saying it with meaning. Sometimes he said it at appropriate times and other times it was completely random. I really didn't think he was saying it. However, while we were in the hospital Camden would turn and reach his arms out to me anytime he was in bed having something done to him and say "ma ma". It was the saddest "ma ma" I had ever heard but yet it was the sweetest. He did this every time he was not in my arms. If I left the room for a hot second to get water the nurses told me he would start getting upset and cry out "maaaaaaa ma" over and over until I got back. We are pretty sure he knows what that word means. So, yay for first words and I couldn't be happier that it happens to be "ma ma"!

I also want to say thank you to everyone who prayed and supported us during this hospital stay and every other day. So many of you truly love my boy and it touches my heart more than you know. Your kind and loving words have helped us in so many ways. We are so blessed to be surrounded by some truly amazing people! Thank you from the bottom of our hearts!