A Good Cry

Kids grow up so fast, don't they? For some reason I feel that way about Camden lately. I know he's only a year old, but he's moving out of the little baby phase and that has made me a little sad. I'm sure it has something to do with several people I know having babies lately and seeing newborns everywhere. I think most moms can agree that there is just something so sweet and special about holding that tiny little newborn in your arms and against your chest. It's such a tender moment. I remember holding Carter when he was a baby all day and night because I just never wanted to put him down. Several people would tell me that he would get too spoiled and that I shouldn't do that. I never believed that theory, and frankly I never cared. It felt right to keep him close to me. I kind of feel like I was robbed of the whole newborn period with Camden and I think that's why I've been so emotional the past few days. Of course I decide to break down and start crying in front of my friends at work yesterday. I had to quickly stop the tears because it wasn't the most appropriate place to be a blubbering mess. However, I think I needed a good cry. Through the crazy emotional rollercoaster that started after Camden's birth, the one thing that kept me sane was getting to cuddle my sweet boy. Being at the hospital and holding that tiny little peanut in my arms was the only time that I felt at peace. I could forget about everything that was going on when I held him in my arms. As soon as I would leave the hospital, I just felt sick again. Once I was able to take him home, I spent so much time worrying and researching instead of taking the time to snuggle him. That part with my fault. I still wish that I could go back and do things differently. I do try to hold him and cuddle him as much as I possibly can, but these days he just wants to move all the time and doesn't like to be held in one spot. I guess that's all part of him growing up. I do love seeing his personality and skills blossom, but sometimes I like to reminisce about he days when he was so small and fit perfectly in the crook of my neck.

Bad Hair Day

We started off the new year with a first haircut. I've been going back and forth about cutting Camden's hair for a while now. Most of you know that he had a lot of hair. It was pretty long in the back with some curl. He had some high maintenance hair for a baby. It would get so tangled several times a day so I had to use leave in conditioner and detanglers. He would scream when I combed the back of his hair because it was such a mess. All that aside, he had really pretty hair. I think I finally decided to cut it after he was called a beautiful little girl a gazillion times. Anyone who does not know Camden thinks he's a girl. I'm not exaggerating. One day a couple of weeks ago he was called a girl five times in a 30 minute span. This happens daily. I think a lot of it was because of his hair. I know it shouldn't matter, but it just really started to bug me. I already get so many other rude or annoying comments from strangers, I really don't want to hear more. Even my own mother kept saying he looked like a girl. Anyway, we decided to cut it. I didn't want to cut it all off because he has such great hair. I decided to have them cut the back short and leave the rest the length of his bangs. Well, that didn't look too great. He ended up with a chili bowl and I was so sad and frustrated so I just had them stop and leave if the way it is. It definitely wasn't the big first haircut moment that I imagined. He's still my handsome BOY though, and the good thing about hair is that you can change it anytime!

Before...waiting to get it cut

During the cut

Fake smile from mom after the cut

We made the decision to pull Carter out of his preschool this year. I really didn't want to and we tried to avoid it, but he was missing too many days. Doctor's appointments and therapy times seemed to always conflict with his school days and it didn't help that the school was almost a half hour away. I didn't want him to keep missing days and have to keep paying, so we stopped. I don't know why this was so hard on me, but it just made he sad for him. I know it's my fault for not having everything more organized. I don't ever want him to feel that he can't do things because we have a lot going on with Camden. He doesn't seem to mind or miss it right now. Next year he will do pre k at the school by our house and that will be much easier. I just need to schedule lots of play dates so he can be around other kids. We are off to a good start so far!

We even had a play date with Camden's little buddy P who is 9 months old. He is doing so amazing! He's already crawling around all over the place and I'm hoping he might motivate Cam to do the same!

I'm also going to start taking Camden to a craniosacral therapist this month. I'm not exactly sure what happens at these appointments, but I have heard great things about it so I thought we would give it a try. I'll write more about it after we have our first appointment. We started giving Camden supplements this week as well. We are starting slow and doing Nutrivene D first, and then will start adding more when we are ready. We are doing this more for long term benefits. I will explain more about that in another post too.

Camden has his cardiology appointment this month and I honestly can't wait to go. I just want to hear that the hole is closed, or is at least closing. This is always in the back of mind and I still worry a great deal about it. I just want to be able to put it behind us. If you can spare a little prayer for him, it would be much appreciated!

So far the new year has started off good and continues to be busy. We are adding more therapies and I'm ready to get back on track after our much needed break. It's going to be a great year! I just feel it! ;)

Holiday Photo Bomb!

I haven't had much time to write in the last couple of months, but I hope that will change after the new year once things slow down a bit. I hope all of you had a Merry Christmas and we want to wish everyone a Happy New Year! I don't want to fill this post with a bunch of words because I have so many photos I wanted to share from this past month. 

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Carter always enjoys the shark at Bass Pro.

Bass Pro has a carousel that the kids can ride for free at Christmas time.

Camden was such a trooper shopping with mommy!

We love going to the Gaylord Texan because it's so pretty during Christmas and they 

have some fun activities for the kiddos.

This was mom's attempt at trying to take some holiday photos at home. I wish I was a better photographer!

Ryan and Janeth on Christmas Eve. 

Janeth and Camden

Rylie and Camden

Kenley and Carter. They are so sweet together!

It was so great that Ryan and Rylie were both here on Christmas Eve. It's been a long time since

all the boys have been together!

Ryan and Camden

The four brothers. Much love there!

Some of our Christmas pictures we had taken of the boys.

This one is my favorite!

Christmas morning before they ripped into their presents.

He was much more excited about the wrapping paper than the toys!

Carter was definitely more excited about his toys!

The most popular gift of the day was this car. Not only does Camden love it, but apparently Carter does too. At least it will get some good use!

Is It Enough?

Okay...I already know what some of you will say, but I just have to get this out and vent a little. I know when it comes to milestones that Camden will always do things on his own time and that it will mostly be delayed compared to typically developing children. Sometimes I get tired of hearing that, but I know that's just how it is. I think I'm just in a mood because we had Camden's one year appointment today. For some reason this one kind of hit me hard.

"Is he crawling?"     NO
"Is he pulling up?"   NO
"Is he standing or taking steps?"  Ummm...no not really
"Is he saying dadadada or mamamama?"  No, he only says babababa and screams or grunts
"Is he picking things up with his thumb and pointer finger?"   No....dangit!

I'm sure you can assume how the rest of the questions went. It just really got to me for some reason. I already knew he couldn't do these things, but having to say no after every single question just made me upset. I wasn't upset with them, I was mad at myself. I started to doubt my parenting skills. Am I doing enough? Every once in a while the annoying "you're not doing enough" monster visits me and I feel incredibly guilty. I know he gets therapy, but it's up to me to follow through with these exercises everyday. Well, I have a confession to make. I don't do what I'm supposed to do a lot of the time. Sometimes we have so much going on that we aren't even home. Then when we are at home, I find myself busy with cleaning or other things. If I'm going to be completely honest, sometimes I just don't want to do it. I want to hold him and cuddle him. I want to play with him and not worry about all those exercises we are supposed to do. I know for a fact that Richard doesn't do therapy with him when I'm at work. He also wants to hold him and cuddle him, and that's okay with me. Is it really okay though? Don't misunderstand, I do work with him. I just don't think I work with him enough. How do you moms who work full time do it all? I can't even manage it working part time. While I sit here feeling sorry for myself, I also realize that it's my own fault. I suppose I just don't want to spend the free time we have "working". I assume that he will get there eventually, right? Ugh...like I said, I just needed to get some things off my chest.

The good news at the appointment was that he did gain a little weight and now weighs 17 pounds and 3 ounces and is 28.5 inches long. His pediatrician told me where he was on the growth charts, but honestly I didn't listen to that part because Camden has always been on his own growth curve. I was just happy that he gained weight! All in all his pedi was impressed. I'm the only one who left the appointment feeling defeated. Sigh. Tomorrow is a new day!

A Gift of Possibility

I wonder if others in different states laugh at us Texans when winter weather comes in. We get some ice or snow and we pretty much shut down and some of us freak out. We got a few inches of sleet last Thursday and it just created an icy mess. I will say that my drive to and from work was terrifying and I think I may have had a few mini heart attacks. The problem is that a lot of us (like me) are not experienced in traveling in this kind of stuff and our vehicles are not equipped for it either. Our roads and highways aren't as well groomed during winter weather as in other places. Although we all had some major cabin fever and couldn't get home for a while, I am blessed that we had a roof over our heads and heat!

 

 

I'm excited to say that I recently became a part of a group of women that started a new adventure a while back. Their goals were to provide moms and families who receive a new diagnosis of Ds with real information and real life stories. So many women have said that when they received a prenatal or birth diagnosis that is was given in such a negative way. We want to change this. We want to change the hearts and minds of those in the medical community who may not have a positive perception of T21. We still have a lot of work to do but are making huge strides. I want to encourage you to send a holiday card to your OB, pediatrician and any other medical provider that you think needs to see how our families are just like any other families. We want to give them a glimpse into what our lives really look like. Please join us and share the gift of possibility!

 

Please check out my friend's blog where she explains this more in detail and much better than I can.

 

 

  Another new exciting thing that we became a part of is I Run 4. IR4 is a non profit organization that pairs runners with children and adults who have special needs or who can't run for themselves. There are thousands of individulas who are part of this and it's so amazing to meet new friends and to hear other people's stories. The inspiration, love and encouragement shared daily is truly special. I'll share this statement from their website because it pretty much sums it up perfectly.

 

"The mental and emotional encouragement for both runner and honorary runner is proving to be a whole new level of motivation and awareness.  Runners are able to find a whole new sense of purpose in their running while sharing who they are running for and bringing awareness to diseases and disabilities of all types."  (http://www.whoirun4.com/about-ir4/)

 

We have been on the waiting list for a match for a couple of months and finally got our match a few days ago with the wonderful Ms. Cynthia. After we were matched I found out that Cyn is good friends with Bri's runner. Bri is Camden's little buddy that we have known for several months and I have had the pleasure of meeting her and her mommy a couple of times now. Then I found out that Bri's runner is good friends with Owen's runner! Confused yet? Owen is also one of Camden's buds that we've known for a while and got to meet him and his family in Chicago. Owen's mommy is also the blogger I linked above. Small world huh? It's amazing how we are all connected! I would have never met these wonderful people if it weren't for Camden.

 

 

 

 

 

 

 

 

 

This Time Last Year

I still can't wrap my brain around the fact that it's already a whole year later since Camden was born. I know I keep saying that, but it is still so surreal to me. This time last year I was driving back and forth to the NICU twice a day to spend time with him, crying my eyes out in between, was 2 hours away from my husband, and was trying to keep it together for Carter. That was honestly the most difficult time in my entire life and I really thought I would never get through it. I thought it would never end. Now here we are a year later and we have definitely survived. We are as happy as we can be and it's been so wonderful to spend time with friends and family during the holidays this year. It's amazing the difference a year can make.

Okay, enough with all my mushy stuff. On Monday Camden got tubes put in his ears and had an ABR hearing test done. I know this is the most simplest of procedures but I cannot tell you how many knots my stomach was in. I could easily tell all my patients' families that it's easy peasy and their kid would be just fine and there's nothing to worry about, but when it comes to my own child it just made me sick to my stomach. I was beyond worried to have him go under anesthesia having a hole in his heart and chronic respiratory problems. It probably didn't help that my husband was just as nervous and anxious as I was. The tubes and the hearing test only took about half an hour but it felt like an eternity. The doctor came in and told us that everything went really well and that he had fluid in his ears so they went ahead and drained them and then put the tubes in. Then the audiologist came and talked to us and told us that everything looked perfectly normal on the ABR. So for now we know that he does not have any hearing loss and I'm hoping with the tubes that he will now start to "talk" a little bit more. Carter insisted on coming with us because he couldn't stand to be away from his little bubba. He was not happy at first when they started taking Camden back to put him to sleep. He's such a protective little guy!

When they brought him back to us in recovery he was pretty drowsy but he was fine and so we left maybe 10 minutes after he came back. It was all super quick. The rest of the day he did great until night time came. That night he kept choking in his sleep, he couldn't breathe, and he woke up puking a couple of times. I guess it was just a reaction to the anesthesia because the next morning he was fine. Then later on that next afternoon he started to get sick with a cough, runny nose, and upper airway congestion (his usual). So, now he has been sick for the past couple of days and I don't know if it has to do with the procedure or if it is just all coincidence. Hopefully it won't last long. I know it's winter time and he will get sick, but when he's getting sick every few weeks it gets kind of tiring. He wasn't even sick this much last year after I brought him home from the hospital. Breathing treatments, keeping him home out of the cold, and lots of snuggles will have to do. I'm sure this crazy weather in Texas doesn't help. It was 80 degrees yesterday, and now it's sleeting and 29 degrees. That is Texas weather for you! 

Other than that there is not much else going on. We have a couple of doctor's appointments and of course we are busy just because of the holiday season, but I'm so blessed and thankful that we are not in the hospital and we can enjoy this time as a family at home this year. I know not everyone is able to do this. Camden's little friend Evan is not so fortunate and is in the hospital right now and will be having open heart surgery for the third time next week. He will most likely be spending his 1st birthday and second Christmas in the hospital so please keep him and his mommy in your prayers.