31 for 21: Luca

Today is Luca's birthday and he's two years old! Last year at this time, Luca was in the hospital a lot, including the days leading up to and immediately following his first birthday. He was battling seizures,  which wore him down so much he lost head control, was at the developmental level of a newborn, and developed a pneumonia that was caused by aspirating his food and drink. He had a feeding tube placed and could no longer eat anything on his own. After trying five different medications without success, he started on the ketogenic diet, and after an emotional year-long battle, Luca is seizure free and thriving! 

He can eat without his tube, sit up, clap, stand with support, laugh, babble, and light up any room with his mega-watt smile. For all the medical challenges he faced in the last year, Luca is so resilient and taught his family and friends so much about strength, perseverance, and true love! Happy birthday, Super Luca! 

31 for 21: Eli

 Last year a dear friend decided to post a pic of a sweet babe along with some info about them as well to her Facebook page every day for Down syndrome awareness month.  With permission I also shared those here for the 31 for 21 blog challenge.  This year she has continued this great project with a little update on how the past year has been.  There is also some new updated pics of these cuties! So, of course I had to share again this year!

We will start with Eli! He is now 23 months old. On the left is Eli a year ago, and on the right is Eli now, rockin' an awesome mohawk! I have gotten to know Eli's mama over the past two years online and have watched this sweet boy grow up in pictures. Hopefully I'll met them in person some day soon!

 

Eli's mom says: "In the past year (after a hellacious first year), Eli started crawling, cruising, taking steps, saying words, signing words, blowing kisses, and continued being one of the best blessings in our lives. Most importantly, he has been healthy!!!"

 

(P.S. If you happen to live in the greater Seattle area, you might recognize Eli's handsome mug from the side of a bus--he's a poster child for Seattle Children's Hospital!)

 

 

 

 

ND Therapy

 Now that I'm starting to get a hang of this new therapy, I thought I would write about what we are doing. We have been doing it for about seven weeks now and I finally feel like it's becoming part of our routine. I must admit that the first few weeks were hard. It's always challenging when you start something new and there are doubts and frustrations that come along with that. I also felt a lot of pressure to get it done 100% no matter what. The goal is to do 50%, but I felt a need to finish it all. I quickly learned to let that go. I can only do what I can do and I have become okay with that. Life happens.

 

The first step we took after leaving the evaluation a couple of months ago was cutting dairy out of Camden's diet. He has always had some major congestion issues and for a while I just got used to it and didn't think anything of it. After talking with his therapist she suggested trying to stop dairy, mainly cow's milk. I've always thought about doing it, but never took the plunge. Camden gets a lot of his calories from milk so switching to almond or coconut milk was not an option. He would wither away to nothing! We decided to switch him to goat's milk since it had plenty of fat and calories. It's easier to digest and is better tolerated than cow's milk. Then I realized that almost everything he ate had dairy in it...cheese, yogurt, goldfish,etc. It was a difficult transition at first but it's not so bad anymore. After about 10 days we noticed a dramatic improvement in his snottiness and congestion. It was pretty much non existent. He also had more energy and just seemed more alert. Every once in a while I cave and give him a treat, but other than that he has been dairy free except for the goat's milk.

 

We have a checklist of all the activities that we are supposed to do with Camden each day. The goal is to do it 5 days a week and then the other two days you rest. It's always random days for us since my two days I work a week is always different. Some weeks we only do it 3 or 4 days because we are just so darn busy. Anyhow, each activity has a specified amount of times you do it per day and for how long. For example, we do picture cards twice a day for two minutes each time. The words are taped out in the picture because it is supposed to be the picture only. I flash through them quickly for a total of 4 times per picture. We eventually take away older cards and constantly add new ones. Cam really likes this one. He seems to really be paying attention and points to each card as I go through them. This helps with visual processing, central detail vision development, and receptive and expressive language.

 

 

 

 

 

 

We also do various textures all over his body. I try to keep them all in this basket but sometimes he gets a hold of it and some items end up missing. I usually do the tactile sequence activity with this one since he has to be naked. These are all sensory exercises. 

 

 

 

 

 

 

We do oral exercises a couple of times a day and these are definitely not Camden's favorites. I think he just gets annoyed with me sticking things in his mouth that aren't food. The little pink toothette helps with stimulating the nerves inside the mouth. The chewy tubes help with practicing biting and chewing skills. I try to do these right before he eats because he's in his high chair and it's easier for me to remember.

 

 

 

 

 We are working on getting Cam to crawl on hands and knees. He has his own way of getting around which consists of the one leg out booty scoot. I don't know if we will ever get him to do this. I have tried to no avail. I get over his back and try to keep him on all fours but he either lays flat and screams or pushes back up to sitting. Crawling on the stomach or hands and knees helps to organize the brain and to build/repair strong foundational neuro pathways. We do several exercises for this and I will probably never get a picture or a video because it takes at least two people to do this. We don't do this as often as we should because by the time me or the hubby get home from work it's late. I've tried to recruit Carter to help but he usually gets up in the middle and says he's done. I don't blame him. He shouldn't have to do it.

 

 

 

We also do a lot of audio input. We listen to children's music, classical music and children's stories. We have always done this, but we do it A LOT now. Camden has finally taken a real interest in books now so I'm taking advantage of that. Input, input, input.

 

 

 

 

 

We do an activity called auditory direction sequences which helps build the auditory processing that is foundational for decision making, phonics, attention span, following directions, conceptual thinking, and language skill. You write down a list of commands like "clap hands" on index cards. You choose a few from the stack and call out the command. The idea is to be able to call out 2 or 3 commands and your child follows them in the appropriate order. Cam is still a little young to do more than one at a time so we just do one and then move on the next one. He already knew how to do a couple of them, but we had to show him how to do a lot of them. Once he has learned them he should be able to do it when you say the phrase without you showing him. He can do several now so we are working on learning some new ones.

 

 

 

 

That's just a handful of exercises that we are doing daily, but it kind of gives you an idea. If I wrote about all of it this post would go on forever! It definitely isn't for everyone, but for us it's working right now. Some of it was hard on Camden at first. He would scream and fight, but he did that with ECI sometimes too. He only fusses with a couple of them now and actually enjoys a lot of them. We have our re evaluation in December. Until then we will keep plugging away!

 

 

Wordless Wednesday

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  

 

 

 

 

 

 

 

 

 

 

 

 

It's Okay

I started this blog to be able to update friends and family on how Camden is doing, to possibly help other parents if I can, and for me to have an outlet for my feelings. I know it probably seems crazy to a lot of people that I can't talk to someone about what I'm feeling, but I can put it out there for the whole world to read. I don't know why this is, but that's just how I am. I do better with writing about what I'm thinking. I've been struggling this past week with a lot of emotions and it's been hard because I couldn't find a way to let them out. My husband is a tough love kind of guy so it's hard for me to talk to him at times. His response is usually "this doesn't bother anyone else but you, so I don't know why you're so upset about it." That's just how he is. He is more of a positive kind of person. I don't talk to friends about my feelings because I don't want them to feel sorry for me. I don't want them to think "oh poor Diane." I usually turn to my Rockin' Moms for this kind of stuff, but I didn't want to be a Debbie Downer for them too. So I keep it in and move on with my life. I have a house to run and a family to take care of. I don't have time to be emotional. I also feel ashamed because I don't know if it's okay to feel what I'm feeling. I am very lucky and very blessed so there's no reason for me to be upset, right? I don't want anyone to ever think that I'm not happy or that I do not love my son with all my heart. I feel like I shouldn't be sad because there is nothing to be sad about. I will say that 90% of the time I am beyond happy, but the past week was rough. Sometimes it is just so damn hard. I don't really get down about the fact that Camden has Down syndrome anymore, I think it has more to do with what that diagnosis means for him. Sometimes it just hurts my heart because there are so many challenges for him and he has to work so hard to overcome them. It hurts my heart to think of him being treated badly by others in the future and for the rest of his life. If I'm being really honest, I've been a bit depressed about him not reaching certain milestones yet. I know everyone says that he will do it on his own time and I know they are right, but sometimes that doubt creeps into my mind and I wonder if he ever really will. Usually that kind of stuff doesn't bother me but lately it just has me feeling like I'm not doing enough for him or that I'm not doing right by him. I guess you could basically say that I'm throwing myself a little pity party. The positive is that this does not happen very often anymore, but when it hits, it hits me hard. I always ask "Is this normal? Is it okay to feel this way sometimes? Is it okay that there are still days that I bawl my eyes out?" In my mind it is unacceptable and that's why I keep it inside. I finally opened up to a friend the other day and she told me 

"It is perfectly normal to have all the emotions and feelings you are having. Don't beat yourself up for having those. You're human and imperfect, but that is what makes you special and perfect all at the same time."

She didn't know it, but her words really had an impact on me.  It was a simple statement but it let me know that it is okay. I'm still learning to sort through all my feelings and I always say, I'm a work in progress.

                        

Thanks Son

Well Carter survived his first week of school and mommy did too. He started Pre-k on Monday. Now I know most think it's only pre-k, but he's gone folks. He starts at 8 am with the rest of them and goes until 3:20pm every day. It seems like so much for pre-k but at least they take naps. I honestly did not want to send him this year but he's been begging to go and the hubby wanted him to go too. I was outnumbered. We live in a small town and it seems like everyone here goes to pre-k so we thought it was a good idea for him to get to know his peers. I did pretty well until the third day and then I broke down in the car after dropping him off. I don't really think I cried because of my child, I think my tears were for all the other little ones bawling their eyes out. I imagine it's a hard transition for those kiddos. It's only been a week but so far Carter loves it and asks daily when he gets to go back. I ask him every day what he did in school and I always get the same response, "I don't remember." I read something the other day about ways you are supposed to ask your child about school to get them to answer. What I've been asking was too broad so I needed to be specific. I asked what his favorite and least favorite thing was that he did, where do you play the most at recess, who did you sit by today, etc. You know what? It didn't work. He replied "I don't remember" to every single question. Oh well, I'll just keep trying. The night before school started I tried to convince him to stay home with me.

Me: "Can you just stay home with mommy this year?"

Carter: "Nope. How am I going to get big if I don't go to school to learn?"

Me: "I'll teach you."

Carter: "You're not a teacher."

Me: "I can learn how to teach and you can stay home."

Carter: "You wouldn't be a very good teacher."

Gee...thanks son. Way to bring a mom down. I'm not gonna lie...he's probably right. 

 

 

 

 

 

Camden and I jumped right into his new therapy this past week. I went in head first and came up gasping for air. His therapist told me the goal was to do at least 50% of it daily. Ha. I was going to do 100% because that's just how I am. It's all or nothing. I just knew it would be easy to get it all done and I would feel like super mom. Hmmmm...it didn't quite work out the way I had planned it. All you other moms out there doing ND therapy go ahead and laugh at me. You know it's no joke. This program is pretty intense and I applaud anyone who can get it done completely every single day. I was lucky if I got 40% of it done. It's definitely going to take some time for both Camden and I to get used to it. He gets pretty upset with me during some of the exercises and then tries to escape during the others. I still think this was the right direction to go and will be good in the long run. Many people have asked what kind of things we do with ND therapy and I promise to write a post about as soon as I figure out what the heck I'm doing. Hopefully this week will go a little smoother now that we are settling into a routine. 

 

Today was opening day of dove hunting season and we always have friends over for the weekend of Labor Day. They come and stay the night and it's a weekend of good company, laughs, hunting, and great food. Carter is still too young to hunt (and really has no interest yet) but loves playing with the kids that come. Camden loved being outside with everyone and actually let others hold him without screaming like crazy. He's been going through some mommy attachment issues. I love Labor Day weekend because I know that Fall is just around the corner and that's my favorite time of year. It's been a crazy week, but a good week!

 

 

 

 

 

 

 

 

 

 

 

 

20 Months

It's so crazy to me that Camden will be 2 years old in just a few short months. Children grow up so fast. I remember people telling me after Camden was born that the first year was tough. If you can get through those first 12 months then you're good. I remember thinking back then that a year seemed like a lifetime. How on earth was I going to get through it? Obviously we did, and now the second year is almost gone. It has blown by so fast and I'm pretty sure I'll shed some tears when Camden's birthday rolls around. 

 

 

I thought I would update on what's going on with the little guy. He had his cardiology appointment in June and as always it was pretty much the same. The VSD is still the same size but it doesn't seem to be causing any issues. I feel like a broken record when I talk about this subject. We are grateful that we can just keep waiting and watching and hopefully at one of these appointments we will get the news that it's closed! The doc thinks that it's causing a little bit of extra fluid to build up in his lungs but not enough to start Lasix back up. If he gets sick a bunch this winter then we may have to re evaluate. Otherwise, we go back in a few months to check again.

 

 

 

He also had a GI appointment in May to check his growth and follow up on his reflux issues. He still is on Prilosec for the reflux and we can't seem to stop that yet. I've tried to wean him off but it always ends up bad, so we will just keep him on it for now. At this appointment he hadn't gained any weight for a few months. This was the first time his GI doc was a little concerned only because he stopped going up on his growth curve. He started Camden on Periactin to increase his appetite but I haven't given it to him. He actually eats pretty good and is always hungry so I didn't see the need. He wanted me to have it just in case. I left that appointment feeling pretty down.

 

 

 

However, at his ENT appointment in July he weighed 19 pounds! He gained one pound in just a couple of months. It probably doesn't seem like much, but when you only gain an ounce in 4 months, it's a ton! I was so dang excited and obviously Camden was too! They don't really track his weight at the ENT but they let me weigh him for my own benefit. It looks like one of his tubes fell out so he will probably get them replaced in a few months. He will probably have his adenoids out at that time too. That stuff we can deal with...easy peasy. We will go back to the GI doc next month to check his growth and I'm hoping this weight gain is correct and we won't have to stress about it for now!

 

 

 

We decided to stop ECI for his therapy a couple of months ago. I felt we were not getting what he needed and it just wasn't working out. We have decided to start a Neurodevelopmental program and I'm pretty excited about it. We had his evaluation a couple of weeks ago and a program was designed for him and it's something I can do at home with me as the therapist. It seems pretty intense and overwhelming but I'm hoping with time I'll get used to it. We haven't started full blast but I will when Carter starts school next week. Camden will see his neurodevelopmental therapist every for 4 months for a re evaluation and she will make changes to his program based on what he needs. Wish us luck!

 

 

Camden is still working very hard on pulling to stand. I think he's having difficulties with this because of the way he crawls. It puts his legs in an awkward position so he always gets stuck. We are working on it. It seems weird to say that I have a 20 month old who can't pull up to stand. Oh well, he will get there! I definitely think walking will come very late for this kiddo. Good thing he's light since I'll be carrying him everywhere. ;)

 

 

 

 

We've kind of had a breakthrough in the language and communication department. This child would not use any sign language until recently. I really was starting to think he wasn't getting it because he wouldn't even try. He did a couple of signs a year ago and then they disappeared. About a month ago he started showing me all the signs he knows. He's such a stinker. He has about 10-15 signs now. He will only do them if I say the word though. He doesn't come up to me and randomly sign something he wants. He still only has about a couple of spoken words but he babbles constantly. He's very good at imitating me and he tries really hard to say certain words. Maybe one day he will let me get all of this on video! Doubt it.

 

 

We are also working on using utensils. He grabs it and puts it in his mouth but then immediately throws it on the floor. Ugh. Again...he will get there.

 

 

 

 

Camden has for sure turned into a toddler. He tests his limits, he gets into everything, and throws some major tantrums. He understands the word "no" but he thinks it's very amusing to ignore it. He will purposely look at us and smile when he's about to do something bad. I haven't quite figured out to handle this. He doesn't understand time out and me being firm is just hilarios to him. Carter was a super easy toddler so this is all new to me!

 

 

It's hard to believe summer is over. Carter starts school on Monday and I'm still pretty emotional about it. He is extremely excited though and I can't help but be happy for him. I will miss my buddy, but it gives mommy and Camden lots of bonding time! 

 

 

 

 Camden is turning into Mr Personality!

 

 

 

 

My handsome little guy in his Uncle Tommy and Aunt Amy's wedding. Growing up way too fast! 

 

 

 

 

 Since he refuses to take naps a lot these days, he will just pass out when he can't take it anymore. Lol.

 

 

 

 

Love his smile! Melts my heart every time!

 

 

 

 

He's getting over his fear of motion!

 

 

 

 

These two boys adore each other!

 

 

 

 

I love when all four brothers are together.