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.

Dear Camden

Dear Camden,

Today you turned one year old. I mean...wow! I can't believe it's been a year already. It has by far been the fastest year of my life. It was also a year ago today that I found out you came with an extra chromosome. I thought I would be a blubbering mess today, but all I can do is smile. I know I was not the best mommy to you at first and I apologize with all my heart for that. I don't want to rehash all those feelings in the beginning because I feel I have done that enough. Instead, I want to tell you how much you have changed our lives this past year. Your daddy and I have always been close and I had no idea that we could become even closer. You have connected us in a way that is truly special. We have learnd to focus on our blessings and to not let the trivial things get in our way. We realize every day just how lucky we are to have you and your brothers. I've really been amazed at how much your daddy has changed. He's never been the emotional type....at all. He's always been affectionate but he never really shares what he's feeling inside. At our first Buddy Walk last month we were given these blue Ds awareness bracelets to wear. I took mine off later that evening and assumed your daddy did the same. A couple of weeks ago I noticed he still had his on. This is very unlike him. He does NOT wear any type of jewelry. So I chuckled and asked if he forgot to take it off. He looked down at it and replied "No, I like it. When I'm having a bad day I look down at it and it reminds me how blessed I am to have that boy in my life." Then he walked away. Every evening he holds you in the "spot" (in his arms while he sits on the couch and watches tv). I watch him stare into your eyes and I can just feel the amount of love there. It's really incredible and it still gives me chills. He looks forward to that time with you every day. I also see how much Carter adores you. I try to ask him at times if he wants me to take him on a mommy date and he always says "only if baby bubba can come too." He wants to do everything with you. He tells you he loves you everyday. I love that he only sees you for he perfect little boy that you are. You two will be the best of friends. Then there's me. You have brought so much happiness and love to my life. I'm a better person because of you. I see the world differently. I see people differently. I'm more compassionate now. Before, when I would see someone with a disability I would simply smile and walk on by. Now, I often take the time to stop and say hi. I want to get to know people better. I want to know their stories. I have learned to stop being so judgemental and to not jump to conclusions. I feel I can be a better friend, daughter, and mother. Because of you I have met so many new wonderful people. I have met many new women who will be lifelong friends. These women are amazing. They have taught me and supported me through so much. You did that. That is all because of you. I feel like we have been going a hundred miles per hour for so many months and we are finally starting to slow down. I missed so much the first few months of your life because my head was not where it needed to be. Once I was able to straighten that out, it has been absolutely wonderful and ful of joy. I want to savor each moment with you. I will always be here for you no matter what. I will be your biggest cheerleader and will always fight for you. I will help you reach your fullest potential. I promise to never take that sweet smile of yours for granted. I love more than any words could possibly describe. My heart smiles when I think of you...when I see you...when I talk about you. I am so unbelievably proud of you son. Happy first birthday to you!

Love,

Mom

Feeding And Teething

I wasn't sure when Camden would get his first tooth because I have heard kiddos with Ds tend to get teeth later. I'm not sure what the reason is for that (I probably read it somewhere and forgot) but that's what I've been told. Camden has been chewing on things since he was just a few months old and I never knew if it was due to teething or just wanting to chew. Well, now I KNOW he is teething. He woke up the other day with flushed cheeks and screaming like crazy. This is unusual for him. As he was yelling and telling me all about it I saw a huge swollen bump on his bottom gums. I was so excited but clearly the boy was not! This has been going on for a couple of days now and the tooth has yet to break through. It's close though. My baby will have his first tooth soon!

Feeding has been going better around here and that's a huge relief! It feels like Camden has never really wanted to eat and only did it just to survive. We started baby foods a while ago but he was never really that interested. Some days he did good, and others he just flat out refused. We have only been doing breakfast and dinner for a while because he never seemed hungry. I guess in the last two weeks he decided he loved food and has been eating so much better! He now gets three meals a day with some snacks. He has cut down on his milk intake and I guess it's because he's eating more. He still eats mostly puréed foods because his mommy is a chicken and is afraid of giving solid foods. I'm terrified of him choking for some reason. I never had this problem with Carter, but it scares me with Camden. He has had a few bites of real food and did just fine, so I think I need to get over it. We have also been working really hard with a straw sippy cup for a while now. We do the straw because it is supposed to help with the oral muscles which is good for speech. I think that's right. I could be wrong on that too. I just know the straw is good for development. He has had no interest in this for the past few months. I wasn't sure if he knew what to do. Within the last week he has figured it out. I have to hold it for him, but he will slurp that liquid up. Now we just have to work on him holding the handles and doing it himself. 

Now that Camden can sit he is able to do so much more. We went to lunch with Kennedy and her mommy last week and he was able to sit up in a highchair for the very first time at a restaurant! We usually have to keep him in his car seat and he always gets agitated. Now he can join us at the table. He and Kenni sat next to eachother and had tons of fun even though they didn't pay attention to each other at all. 

We put our Christmas tree and decorations up this week. I know it's a bit early, but we weren't able to do this last year so we are extremely excited about it this year. Carter is at such a great age right now because he wants to be a part of everything. The look of excitement on his face is priceless. We have lots of great plans for the holidays and I'm so thankful that our family will be together this year.

Camden started up his Synagis shots this month. He will get one a month until March. As much as I don't like driving all the way to appointments, I don't mind this one because it will help to keep him healthy this winter. It's a good thing he is easily entertained and doesn't mind chilling in the waiting room!

Next week is his ENT appointment. I believe his doctor will decide if we are going to do tubes now or not. I'm okay if he does need them, but I worry about sedation and his heart. I'm sure it's fine, but you know how I stress about EVERYHTING! I hope the fluid in his ears is the reason for his lack of babbling. He still only makes the ba ba ba sound and just laughs at me when I work with him to make other sounds. One step at a time...that's what I try to tell myself. 

A Month In Pictures

Well I tried very hard to post every day during Ds awareness month. I did so good until the end. I only missed two days, but I was still disappointed. This past month has been so busy! I don't really feel like much got accomplished around here, but we sure have been on the go non stop! I thought I would just sum up the past month with a bunch of pictures and as little talk as possible. So, here we go!

It has been a huge milestone month here at the Hill house. Camden finally learned how to roll from his back to his belly. I was so obsessed with this for some reason and when I decided to let it go, he did it.

About a couple of weeks after the rolling, he started to sit up unsupported for long periods of time. Now he is becoming a pro at it! I'm super excited about this one because I really thought it would be a while longer. That's what I get for underestimating my boy!

Then...he started to actually move! He's been attempting to crawl! He gets up on all fours first, tries to go forward, and then always plops down. Since that doesn't work he just uses his straight legs to push forward. Hopefully I can get a video soon. Everytime I try to film him, he stops and looks at me like I'm nuts.

We also had a good weight gain month. He has been 15.5 pounds for almost 3 months and I really thought that's what he would be when he turns one year old. I guess I was wrong...again. He now weighs 16 lbs 3 ounces. He's still a peanut, but maybe he'll hit 17 pounds by his birthday!

One thing I also learned at that appointment is that it is NOT fun to give a four year old shots! This was the before picture.

We were able to make a zoo trip with our pals Evan, Stephie and Aaron. It was Camden's first time.

We also made it out the State Fair. It was a little chilly, but tons of fun. I ate way too much of course, but that's what it's all about! Right?!

We attended our first ever Buddy Walk this year. I had no idea these even existed until after I had Camden. They are held in a whole bunch of different cities and it is a way to celebrate Down syndrome awareness month. There are lots of activities for the kiddos and the actual walk part of it is short. We went to the one in Abilene because we really liked the people we have met there. One of my friends I have met on this journey was so sweet to have us over for dinner the night before. We have really connected with some awesome folks.

We went to a second walk in Arlington the next weekend. I was really excited because I got to see a few of my Rockin Mom friends and their babes.

We were visited by Iron Man and a sweet lil pumpkin for Halloween!

This mommy got to have a "me" night and did the Bad Prom Run with my girls.

All in all, it has been an excellent month! A lot of good things happened and much fun was had. November already looks to be just as busy with Pulmonology appointments starting up again, ENT appointment, Thanksgviging, Camden's first birthday (yep...already), hubby out of town for hunting season, and whatever else can be thrown in there. I'm over the top excited for the holidays coming up because last year we spent them all in the hospital. So this year we will be going overboard! Can't wait! Now I just need to catch up on my blog reading!