The Positives

After my last post a friend of mine said I needed to take a break from my own head. Ha Ha! That is so true! Believe it or not, there are a gazillion of positive things going on inside this big head of mine so I thought I would write about those and share them with you.

Camden wakes up every morning with a big smile on his sweet little face. He still sleeps in our room (I just can't seem to put him on the other side of the house) so we instantly know when he's awake. Since my husband is so amazing, he is the one who ususally gets him to feed him his first bottle. Richard always tells me that Camden is waiting patiently in his bed with a big grin. I get to witness this every so often when Richard has to leave early and I get to be the one to lift him out of the bed. There is no better way to start your day!

I'm really starting to see the bond grow between Carter and Camden. Carter has always loved his baby bubba, but would often get bored since Camden would just kind of lay there. Now that Camden is more active and more expressive Carter is wanting to be around him all the time. I will be in the other room sometimes and then will come into the room where the boys are and I will find Carter leaning over Camden hugging him and kissing him. Then he always says "I love you baby bubba". It is the sweetest thing ever. He gets down on the floor with him for tummy time to play with him. If Camden is fussy and tired we usually put him in his rock n play and rock him to sleep. Now Carter does the same. Camden will watch Carter closely (maybe it's more to keep an eye on him) and will just smile. It's so amazing to see the connection forming between these two. We don't get to see the big bubbas much because they are just so busy. It's summer so there is always something going on and one has a full time job. We did get to see Rylie a few days ago and I still get a warm and fuzzy feeling in my heart when I see him interacting with his younger brothers. I don't even have to ask him if he wants to hold Camden, he will just reach out to take him. There is much love there.

Camden is starting to "talk" even more these days. He started babbling more a while back, but then would stop or just do it every once in a while. Now he is actually putting together ba ba ba and ma ma ma sounds which is great to hear! He has been talking almost non stop the last few days and I'm loving it. Most of the time he really looks like he has something very serious to say and it's so stinkin cute.

 

 

He has also found his feet! I know this is not a big deal to most, but it's a really big deal around here! This is a milestone that we have been waiting for. He is always grabbing his feet now and actually starting to turn over to his side. I'm hoping this will give him the little push he needs to roll over. Either way, we will wait for it.

These are just a few great things going on right now around here. It really is pretty great most of the time. I only share the negatives because I want to be honest and it helps to get the feelings out. I do not ever want to forget the positives though, because those are so much better!

Conflicted and Overwhelmed

There have been a million things going on in my brain lately. I am constantly wondering if I'm doing enough for Camden. Right after we got the Ds diagnosis I immediately dug into my research. Part of my research was focused on ways to help him achieve his absolute best potential. All it did was give me a huge headache, so therefore I decided to revisit it all when he was six months old. Well, now he is eight months old so I have begun my research again. It's extremely overwhelming. I'm hoping some of you more experienced moms can maybe help me out and give me some advice.

I'm so conflicted about supplements. I have found this to be a very touchy subject in the Ds community. There are those that swear by them, and then there are those who say it's all bunk. Several moms say that they have noticed major improvements after starting certain multivitamins and other supplements. They say that their cognition and physical development took off. However, there are those that don't give them and their kiddos are doing awesome as well. The only things we are giving Camden right now is a probiotic and DHA. He seems to have a lot of tummy troubles and this is why we chose to give a probiotic. We give DHA because it's known for having a positive impact on brain development. I ordered Nutrivene, but I just can't seem to give it. If I'm not 100% sure, I don't want to do it. So, it just sits on the counter. When I read the lists of supplements that some moms give it blows me away. Sometimes there are over 20 things on that list. It really makes my head spin. I'm just so conflicted about this whole thing.

Another thing I have read a lot about is neuro-developmental treatment. This is basically an advanced therapeutic approach of therapy for those with neurological challenges. Again, there are great testimonials out there about how this type of therapy has worked wonders for their little ones. The problem is that it's expensive as crap. If I really thought this is what Camden needed, we would find a way to make it happen. How do I know if this is what we should do? We are just doing ECI now. Is that enough? I don't know. 

Last, but now least, is the topic of immunizations. We were having a discussion about this with my cyber sisters and I was honestly so surprised at how many do not vaccinate. I think that is becoming more common these days. I absolutely do not judge anyone for their decision. You have to do what is right for you. I have always been pro vaccination. I mean, there was absolutely no question about it. I was vaccinated and to this day both of my children are as well. As a nurse I know what not vaccinating can do. It's scary stuff. Children have died from measles, whooping cough, etc because of not vaccinating. However, there is a lot of talk about how vaccinations can cause injury to the brain and to the body in general. I'm not gonna lie. I do worry about this. Maybe we can just do a delayed schedule so the vaccines are spread out a bit. I just don't know!

I don't want to make the wrong decisions. I don't want to not do something that could possibly help my son. My gut really tells me to just keep doing what we are doing. Maybe I should just go with that. Besides, didn't I say that I was just going to let him be a baby?!

(3) on 21

I'm participating in my first ever blog hop! This one is a community project of Down syndrome blogs and the T21 Writer's Alliance. 

One Truth:

Sometimes Down syndrome just sucks. I used to be afraid to voice that opinion, but I have come to realize it's the truth for me and it's okay to say. I love my son with all my heart and that is why it's difficult to see him struggle with medical issues and development. I will have to fight hard for him and his future. I know it will always be this way and that just stinks. 

One Tip:

Enjoy your baby! We are pretty new to this whole thing so I don't have a bucket of tips yet, but this is a big one I can give. A baby is just that...a baby. They need you to feed them, hold them, love on them and play with them. Don't worry about all that other stuff you can't control right now. Spend time connecting with your child. Treat them just like you would any of your other children. I wish I would have taken my own advice 8 months ago. I spent too much time worrying and crying and now I can't get that time back. So again, enjoy your baby!

One Photo:

 

 

 

"Let Him Roll"

I suppose I'll write about our sleep study last month since we have received our results. The reason we even had this done is for a couple of reasons. First, I have noticed that Camden wakes himself up at night sometimes and does this weird gasp thing like he's trying to get air. It really isn't that bad, but I figured it's better to be safe than sorry. Second, everything we do this year does not cost us a penny. We hit our out of pocket max a long time ago so anything I can get done before the year ends I want to do it. Third, it is recommended that little ones with Ds get sleep studies done before the age of three because a lot do have sleep apnea. He probably would have been just fine without one, but then I would have wondered about it constantly. I'm a little obsessive as you know.

The non sleep study was just terrible. I don't even know how they got enough data because it seemed like he did not sleep AT ALL! The whole process of setting up all the wires and leads took a couple of hours. They put electrodes all over his head using this gross sticky lead paste (that was fun to try and get out). Then they put some on his chin and neck to look for snoring. Then they put some on his chest, stomach and legs. All of that didn't seem to bother him too much. He was a little fussy, but not bad. When she started putting the straps around his chest and belly he started to throw a fit. They weren't tight, but I think they just irritated him. After that we gave him a break so I could feed him and try to get him to sleep. There was still the nasal cannula to put on but the tech wanted to wait until he was sleeping because we knew he would fight it. Once he fell asleep I put the cannula in. He immediately knew it was there. He tried everything he could to get it off. He finally calmed down and passed out so I tried to go to sleep since it was midnight at this point. I can't tell you how many times that tech had to come into the room to tape that darn cannula to his face because he kept pulling it out. She said that was the most tape she has ever used on a baby to keep it on. I think I slept about two hours when she finally came in and asked if I was ready to go. That was a big YES! I'm so glad to get that night behind us. The report basically said he has very mild sleep apnea, so all in all it was good news. I won't go over the specifics because it still confuses me to read it. At least it's done and he's good to go.

Poor little guy didn't know what was about to happen!

Finally asleep...before the nasal cannula.

He looks so stinkin cute!

"Let him roll."

That is what Richard said after I told him about the miserable night. He didn't mean it literally, he meant to just let the boy be...to let him be a baby. He asked me if I could just stop and let things go. I needed to hear that. He is right. It's so hard for me because as his mom I want to protect him and do everything I can to help him. As a nurse, my mind goes into overdrive conjuring up every possible thing that could be wrong. I think I have decided to take Richard's advice and will try my hardest to not go looking for trouble that is not there. This year is going by way too fast and I don't want to miss any moments due to my obsessiveness. I know I have said this before, but I really am going to try this time.

 

Progressing...Slowly

It is hard for me to believe that Camden will be 8 months old at the end of this month because I can't believe that 8 months has really gone by, and second because he doesn't really act like an 8 month old. I was reading  this post by my friend the other day about how she lied about how old her baby was in the moment. I chuckled a bit when I read it because I did the exact same thing not too long ago. Sometimes I just get so tired of people asking me the same question and getting the same Iooks. I used to try and explain but why should i have to? This is how the conversation pretty much goes with a stranger:

Stranger: Awwww what a cute baby... how old is he? 

Me: 7 months

Stranger: Oh really? He is so small!

Me: I know...thanks.

Then the conversation usually proceeds with them asking me what kinds of things he is doing developmentally. They really get the confused look on their face when I tell them we have been working hard on head and neck control. I used to throw in that he was a preemie and he has Ds, but I feel like I'm making excuses or trying to justify why he's so small, etc. I don't feel the need to do that anymore. He's just Camden.

With that said, let me update you on how he is doing developmentally. I have felt like we were at a standstill for a while because he was not doing anything new. I did get a little frustrated and started to blame myself for not working with him enough. Once I got over myself, I started to see what he is doing. He did stop rolling front to back a couple of months ago and still has no desire to roll back to front. We do exercises to try and help this, but he just doesn't seem interested. His head control is great these days. I don't really need to hold him in the cradle position or support his head much anymore when holding him. I can actually carry him on my hip and he will stay upright pretty much the entire time. This is a big change because he used to be a flopsy mopsy.

His sitting has improved greatly as well. He can't sit unsupported yet, but that's expected at his age. He does sit pretty well with support either in between my legs, in a bumbo, or just propped up. When he used to sit in his chair he would instantly start to lean, but now he can sit up for longer periods. When he gets tired though, he just starts to fold over.

We can actually use the highchair now!

The biggest thing he has started doing is bearing weight on his legs. Anytime we tried to get him to do this before he would either bend his legs up in refusal, or his legs would be like spaghetti and just fall to the floor. Now he will stand for a couple of minutes at a time until his legs give out. I have to hold him or support him of course, but this is a major improvement. The great thing is that he loves this position! He will laugh and smile the whole time. We are so proud of him!

I think the important thing for me to remember is that he will reach all those milestones, but at his own pace. Even though it may be slow progression...it is progression. It doesn't really matter how long it takes because I don't want to rush things. Like I always say, "one day at a time".

This and That

It seems like we have been so busy and yet I feel like I have not accomplished much this summer. I think we only have one doctor's appointment this month (please go knock on some wood for me) which is a record for us. We did have to swing by the pediatrician last week for a weight check and it was the first time in a long time that I was HAPPY about his weight! He weighed 14 lbs 2 oz. He gained about 9 ounces in two weeks which is way better than it has been. We are supposed to follow up with GI next month and until then they want weekly or every week weight checks. I think we are going to go with every other week. I mean, who really wants to go to the doctor's office every week?! I don't know if it's the avocados, the Lasix, or just him...but it's working.

                Doesn't he just look bigger?! 

Does anyone have experience with a three year old going through emotional turmoil? I know I have a lot of friends out there that have kids around the same age as Carter. Are they extremely emotional? It's not terrible three's, it's just end of the world type of crying about everything. For example, the other day he fell on his knees outside (which happens all the time without tears) and you would have thought he broke both of his legs. He's screaming at the top of his lungs holding his leg and saying "I can't walk, I can't walk". This goes on all night long. He literally would not get out of the bed because he thought he couldn't walk and just cried and cried about it. So, being the nice and sympathetic mom that I am, I picked him up and put him on the floor and told him to stop being a baby and walk. That was a mistake! There was more screaming, more crying, and just an all out emotional breakdown. This happens almost every other day with all types of situations. He's not done this before so it's all new to me. Hopefully it's just a phase. 

 I will say that he is always happy around his baby bubba!

I finally went and got a haircut the other day since I was childless. I'm losing hair like crazy and decided to just chop it all off. It's not that short, but pretty short. Anyhow, I don't get my hair done often so I don't have a regular hairdresser. I know friends who have had the same hairdresser for years and they know everything about each other. For me, it's always a new random person which means new random conversations. While she was washing my hair we started talking about our kids and how she is pregnant now and whether or not we wanted more. I told her we were done (my husband says his four sons are plenty) and she said she thought she was done as well. She went on to say she was done because she was getting older. I pretty much already knew what was going to be said next. I could just sense it. "I don't want to have a sick baby with problems like Down syndrome", she says. Ouch! That stung a little. I wasn't mad at all and I can't really blame her for saying that. It's not like I went around during my pregnancy saying "Oh I hope this baby has Down syndrome". In fact, I was hoping that he didn't. That's all different now of course. I wanted to tell her about Camden, but then I thought she would feel bad for what she said and it would make for a very awkward hour of haircutting. So, I kept my mouth shut and continued our pleasant conversation just kind of smiling inside my head.

Definitely not a sick baby (today anyway) and definitely not a problem!

Our one appointment is with the pulmonologist to discuss the results of the sleep study a whole month later. It's crazy that it takes so long. I booked our vacation to Chicago for August and I can't tell you how excited the hubby and I are excited about this. For one, we need it badly. We just need to get away for a few days. For another, I'm going to meet up with several of my cyber sisters and fellow blogging mamas for a couple of those days. I can't wait!!!!!

I bought some baby boy bloomers...love them!

A Sign

My drive to work is over an hour long in the wee hours of the morning. I usually spend most of this time listening to music so I can stay awake. Every once in a while I will turn the music off so it's quiet and I can just think. Thinking is pretty dangerous for me these days. My mind wanders off to places it shouldn't go. The other day was one of those days. I was thinking of Camden and Carter and their future. I didn't really get sad, but for some reason I just started crying. I've said it before, but I'm a bit of a cry baby. It's even worse now. I think I just started getting worried because I really don't know what to expect for Camden's future. I know I could say the same for Carter, but his is probably a bit more predictable than his brother's. Then I started thanking God for all of my blessings and asking Him to ease my worries. I asked Him to give me a sign to let me know that everything will be okay and to stop worrying so much. I arrived at work and went about my business as usual to start the morning. As I was charting at the desk I see a young boy roll by in a wagon out of the corner of my eye. I look up and he gives me the biggest smile and waves...and he had Ds. Then he was gone. Was that my sign? I thought about getting up and following behind them so I could talk to his mom. I really didn't want to bother them though, so I decided against it. Actually I was more scared than anything. I don't really know why but I started to get those nervous butterflies in my stomach. I guess it's because I haven't actually approached a random stranger about this before. So, I just let it go. Maybe five minutes later the mom comes and asks me if I could watch her son for a few minutes so she could run to the bathroom. Okay, this has definitely got to be my sign. Some would say it's coincidence, but I would argue otherwise. I went to play with the young boy who was just amazing. It was obvious that there were some developmental delays and medical complications, but none of that mattered. He was a smart cookie. He could use sign language quite well and his smile just melted your heart. When the mom came back I gathered up the courage to tell her about Camden. She smiled at me and said "how wonderful". She told me that her son is the best thing that has happened to her family and that she would never change a thing about him. I could tell she wasn't sugar coating things to make me feel better. You could see her eyes light up when she talked about her son. She then got a little teary-eyed and said that her little boy brought her entire family to the Lord. She said her son would start kindergarten this coming fall in a typical classroom with the help of an aide. She gave me a lot of good advice and I walked away feeling pretty great. This was really the first time I have spoken to a parent with a child much older than Camden in a one on one setting. Most of the time it's at an event with a lot of commotion going on in the background which makes it hard to focus. I was very thankful for this encounter. He really is listening.