Merry Christmas!!!

Our family would like to wish you all a Merry Christmas! I know that I have not posted in awhile and I have been really bad with pictures, but in all honesty it is hard for me to find the time and at this point we do not Internet service at the house (so it is finding the time while at my parents or grandma's house :) ).

Things have been really good. We are enjoying the house and the boys getting older. Kaden is liking school a little better, getting so much better with writing his name!!! He is growing like a weed and every day getting smarter and smarter. The other day we were playing "Who am I?" His clues were "I like hunting and I don't listen." That's right...daddy!!!! It was hilarious. Then my dad and him play a game were Kaden kisses grandma and grandpa pretends like he is upset and says "boy, you better not be kissing my woman." Kaden loves that game. So anyway, Kaden types to me "mommy you daddy's woman." What a silly little man!!!!

Brody is also getting unbelievably big. He is eating table foods, standing on his own and taking some steps before lunging for an enjoyable thrill (I guess). The most he has taken is 7 steps. He can be kind of a bully but loves his brother to no end. He is into everything...I think his favorite is the toilet so we are trying to teach Kaden to keep his bathroom door closed. We are battling ear infection after ear infection with Mr. Brody so Wednesday he goes to see the ENT doc.

So since I am behind on pictures I have decided to post a billion of them :)!!!! Ok, I lied. I will try again soon. For some reason I couldn't get them to post, but I will try tonight!!!

"Good News"

Well, the CT scan came back earlier today. Initially we were told by the doc that it looked as though Kaden's diaphragm had reherniated. My heart just sank. That was the last thing I wanted to happen, another surgery for our big guy. I really don't want him to be put in that situation, especially with how far he has come. Surgery just seems to make him take a BIG step back. Well, then the surgeon resident looked at the CT results and said that he believes that the patch is still intact but that it seems like he has a small bowel obstruction that is actually pushing up against that patch, probably causing his difficulty in breathing. He did come off the vent today and stayed off the majority of the day and is off of O2 although his sats are not as great as they can be.

So the plan is for us to hang out at the hospital, hoping that this obstruction corrects itself. If it can not or gets worse he still will have to have surgery for them to correct it. He has gone through this before and things did correct themselves after a few days. He is not getting food, so he is getting fluids through an IV (that is one of the reason for staying in the hospital). We pray that things will correct themselves, that he will not need surgery, that he stays comfortable and that we are home in time to spend Thanksgiving with our family.

We all are missing our Brody. This is the first time I have been away from him other then being at work and honestly he goes to the same daycare that I teach at. Luckily, my parents are bringing him down this weekend and the hospital just lifted a "no sibling" policy (due to the large amount of H1N1 flu patients) so Kaden can see his "buba". He really misses him and has been talking about him a lot since we have been here. We can not wait to see him and give him hugs and kisses.

Thank you for all of the prayers and please keep them going for Kaden.

Day Two

Kaden slept VERY well last night. I was surprised. He is a little quiet but seems to have a little more energy. Right now daddy went down with him to get the CT scan done. Hopefully after that we will know a little more to what is going on.

I got more sleep then I anticipated but had a pretty tough night last night. I think because it was quiet and such that I had to much time to let my mind start wandering. Being here sure has brought back a lot of memories.

Well, I will type more later. Kaden is back!!!

Two Steps Forward, One Step Back

Last night was a long night. We took Kaden to the ER and did not get home until 12:30-1:00am. He has been battling brochitis/pneumonia (can not honestly tell you which one it is, I have heard both from the same doctor) for the last two weeks. Well, this week he just seemed to be getting worse...especially yesterday. He is now back on the vent 24 hours a day and has been requiring O2. He is really run down and just not himself. Yesterday I noticed that his belly was distended and he was even more run down then he has been. I then called his doctor in KC and asked her if it was possible that his diaphragm reherniated. She said that it is always a possiblity and wanted us to take him to our hometown ER to get a chest x-ray and some lab work done. The ER doctor believed that it looked as though it did reherniate and so we made plans to come to KC today. The doctors here are not sure if this is the case or if something is going on with his GI track so he is admitted into the hospital. He is not a happy camper and is ready to go home already. Tomorrow they plan on doing a CAT scan to see if they can see things clearer. I really pray that it is not his diaphragm and that we can stay clear from surgery. I will update more tomorrow...I am running on about 3-4 hours of sleep and can not think clearly.

Time Flies...

Things have been going by fast lately. Sorry I have not updated recently. We finally got into our new house around the begining of last month. Nate and I also celebrated our 3rd anniversary. Halloween went well, until Nate dropped Kaden on his head. We were out trick-or-treating and Kaden was dressed up as batman. Nate was carrying him around on his back and when they would get to a house he would swing him off of his back to make it look like he was flying. Well, Kaden didn't hold on or something and instead of flying he landed hard on his head. He was done after that and got a big bloody bump from it all (thanks a lot dad!!). Brody on the other hand didn't enjoy it much at all, he was just ready for a nap.

Kaden does not seem to be enjoying school too much. He has been crying a lot lately. I think it has been a big adjustment for him. Yesterday he was diagnosed with bronchitis again, so we are trying to get him feeling better.

Brody is crawling and getting into everything. He can say "mama" "bubba" and "bye-bye" (at least I like to think that is what he is saying). He is cutting his third and fourth tooth, so that is a lot of fun!

Nate...well, it is hunting season so he is out to find that trophy deer that he seems to miss every year!!!

As for me, well, I am here. I am very tired and feel like there is just not enough time in the day for everything. I really could use one full days worth of uninterrupted sleep (ahhh, a girl can dream, right?).

Well that is a quick update on what has been going on. I do want to post pictures and I really will try this weekend. We do not have internet set up at our house yet, so I will try to keep things updated when I find that extra time!!! Hope everyone is doing well!!!

The News...

I have to make this quick, but I am very excited to share it with everyone!!! Yesterday, Kaden had an appt in KC. They put a little camera down his trach and his nose while he was awake to look at his vocal chords and other things. Everything looked GREAT!!! His vocal chords are not paralyzed!!! That means there is hope that he will be able to get rid of the trach and that is exactly what we are working towards. They seemed very thrilled that Kaden is staying off of the vent for as long as he is (approx. 12 hours during the day) so now we are working on taking him off at night. I was going to start last night, but time went a lot faster then the rest of me, I felt like I had way too much to do. So, tonight we will start. We are just going to start with the hours I am awake and see how he does and then as time goes on we will work up to more hours at night. So once he can show us that he no longer needs the vent, we will then start working on getting rid of the trach!

More big news...Kaden got a paci-meir (don't know how to spell) valve. This goes on his trach when he is off the vent. He can use his voice loud and clear. So yesterday we heard Kaden's true laugh. It is a beautiful laugh and every time I hear it I can't stop laughing. Last night, I heard my two boys laughing while playing with each other...big, happy laughs!!!! One of the greatest sounds I have ever heard. I can't wait to post a video of them laughing together!!!

Stay Tuned...

For some great news!!! I have a wonderful post to share, unfortunately I am worn out and it is late. I am super excited though and for some reason felt the need to leave some people wondering :). I hope to post tomorrow around lunch time!!!!

How could we stay mad???

Yesterday Kaden had to change his card at school to orange. They have this system involving green, yellow, orange and red cards per student. They start out the morning and afternoon on green. The students have to change their cards, almost as warnings if they are not doing what they are suppose to do. Yellow is more of the warning, orange-miss a recess, red-principals office. Kaden has had to change his card once to yellow for basically telling the teachers no. Yesterday he came home with a green in the morning but an orange in the afternoon. Apparently he was "refusing" to work for the occupational therapist. I guess Nate left it to me to be the bad guy, telling Kaden he was going to be in trouble when mommy gets home (thanks).

He got his computer time taken away as well as his cartoons for the night (Nate thinks computer time should be taken away for the rest of the week, I think that is a little too harsh for a Kindergartener). As we were talking about it Kaden got out "white" (communication device) and typed the following:

"grandma wants to say roar Kaden no color yellow she going to be so mad grandpa wants to say growl kaden we not color orange not funny again nana wants to say no babies (a game they play) brody wants to say waa waa waa waa"

I thought it was so funny (especially since those three, are some of the most leneant people in his life). Nate and I couldn't help but laugh. I think Kaden had it planned out...how do I remind mommy and daddy of how stinken cute I am, I know...

What a clever little guy on my hands. Oh what is Brody going to learn????

Overdue...

First of all, I want to apologize for not even posting some comments. I didn't do it on purpose. Typically, I read them in my e-mail account and publish them from there, I don't know what happened but when I logged in tonight to post, I noticed I had 6 unpublished comments. Sorry, I wasn't ignoring any of you.

Kaden continues to do well off the vent. He spends most of his time during the day off and I put him back on before bedtime. I would say he spends about a total of 2 hours on the vent during the day, the rest of the time he is vent free! Of course some days he is on longer but that is not often. He is enjoying kindergarten and is learning so much. Today he counted up to 100 for me by typing out the numbers on "white". He only needed help with the number 30. I am so proud of him...so not only was he able to count that high but he was able to recognize the numbers as well. As always it amazes me at how much is going on in that little mind of his.

Brody still only has two teeth. He is getting over an ear infection. He is starting to crawl more although he still prefers the army crawl. He has finally figured out how to sit up on his own. I can't believe he is already 7 months!!! Time sure does fly.

The house should be ready to move in within the next week or two. We'll see, I think I remember saying times frames earlier and yet we aren't in yet. It is really close though and I am super excited!

Ok, now for some pictures. Since I can't see my pictures when I post them I will just explain to you now what is being posted. Some are pictures of Kaden's 5th Birthday at Chuck-E Cheese and his first day of kindergarten. There are some of Brody that go back to almost a month ago. So here they are...













I forgot to rotate some of the pictures...sorry.

Quick Update...

Tomorrow will be the finish of the first week of Kindergarten for Kaden. He is doing well and says he likes it. He must, the only way I can get him up for school is to ask him if he is ready to go to school. Yesterday he was off the vent for 10 hours STRAIGHT!!! He is doing great. Today was another 8 hours with about a 45 min break back on the vent. What a big boy. We might get rid of the vent yet!!! I am so proud of him...I know I say that a lot, but I am. His walking is getting so much better too!!! Quick story about our conversation tonight...
We were reading our bedtime stories, one being The True Story of the Three Little Pigs (given to him by one of his nurses). He kept pointing to the house made of sticks and I could not guess what he was trying to tell me, so we grabbed White (his communication device, yes, Kaden named him and yes, he gave it a gender :) ). He then types out "Daddy did not put sticks in Kaden's new house" "Yes baby, your right daddy did not build the new house with sticks." "bad." "yes that would be bad!!!" I couldn't help but laugh.

As for Brody...he is growing so fast. He has been trying to crawl. He gets up on his hands and knees and then lunges forward. He does make his way around by doing the infamous army crawl. He is getting his two bottom teeth, both at the same time. They do not seem to be bothering him too much just the typical chewing on everything and drooling everywhere. He is such a happy baby. He has learned how to do the "indian chant". Sorry if that sounds horrible, I don't know any other way to describe it. He is loving baby food...any and all of it so far. He loves his big brother Kaden and loves to grab any vent tubings or cords plugging in Kaden's supplies. Kaden is such a little man grabbing them out from Brody's grip and giving him a toy instead.

The house is coming along and we are hoping to be able to move in the first week of Sept. I am not getting my hopes up though, Nate keeps changing the date. It looks great. They did such a wonderful job. I am so excited and can not wait to move everything in. Kaden loves his new room. We often go there and Kaden hangs out in his room playing with the toys we did move over there.

Well, I think that is all for tonight. One day soon I promise to get pictures posted. It is just hard for me to find the time to be on the computer long enough to post. Hope to do it sooner then later.

HAPPY BIRTHDAY KADEN!!!

5 already???!!! Kaden turned five today. He is growing so fast. Monday he will be starting kindergarten. It makes me so sad, but so proud and happy for him at the same time. It still amazes me when I see him accomplish something new (maybe that is just a mom thing and it will continue to be that way when he is 50???).

Kaden,
I know we have said it before and I know we will continue to say it, however, I will say it once again...we are so proud of you. You are nothing short of amazing, not only with how brillant you are but how caring, loving and kind you are as well. Every day of your life I have felt blessed to be your mommy. You have touched more lives then you realzie in your incredible 5 years of life. Now is the next step...KINDERGARTEN!!! I know you will do great!!! I am excited for you to learn new things and make new friends. I can not wait to see what you show us next. You are our miracle baby or should I say BIG BOY!!! We love you bubby, forever and always!!!

Love,
mommy, daddy, Brody and angel Ava

Sorry...

I just want to apologize for the lack of posts as well as pictures that I promised (only too long ago). I just haven't been in the mood, I know, not a good excuse. I have some things I need to work out with myself I think...maybe that will put me in a better mood, you know get my head straightened out a bit. I kind of feel like I am lost (I don't want that to sound weird, I just haven't felt that great lately...I think I am overly exhausted).

The boys are doing GREAT!!!, growing way to fast for my liking. Kaden will be in Kindergarten next month, which makes me almost sick to my stomach knowing that he is growing up. Our house should be ready for us to move in within a few weeks...which I am so ready for the extra space...maybe that will help my head as well. Well, that is about it for now. I do promise to post more about us as well as some much needed cuteness (aka picutres of the boys) sometime soon. Take care.

Stay Strong Tucker

Please pray for Tucker. He was born with a hypoplastic left heart (like our Ava). His mother had found out about a heart surgeon in Boston that reconstructs the heart to make it whole again. Well, he just had surgery to get his whole heart today and is doing very well. Please keep him and his family in your prayers as he still has to recover.

Tucker,
Stay strong big boy. You are in our thoughts and prayers. XOXOXOXOXO




About us:
I will post more later. I am tired (still) and need to get to bed. Things are going well though. Brody is now on baby foods and has been for almost two weeks now (2 weeks this Sunday). He LOVES them.

Kaden is, as always, simply amazing. He continues to grow and learn new things. Potty training is going great with a day or two of set backs, but back to wanting to use the potty (nothing a little money couldn't handle ;) ). He is tolerating coming off of the vent very well and my plan is to push him as much as possible this summer.

I took the boys swimming last weekend at my parents. They both loved it. Kaden has been before but never really wanted to stay in longer then 15 minutes. This time he stayed in for at least two hours (while off of his vent). He wanted to go under water like his cousin:(. I told him once we get rid of the trach he can go under all he wants. My mom and I were trying to come up with some ideas on how trach kids could go swimming more safely and go under water...still thinking, then we would need to send it to someone powerful like Oprah :) to get it made. Oh, one can dream, right???

Anyway, more later. I am off to bed. Yawn....

Oodles of info...

Ok, I know, that title is kind of corny...but it is the first thing that popped into my head. So anyway, things have been kind of busy (like always). I really wanted to post pictures last weekend, especially since I do not seem to find time during the weeks to do so. However, I was sick on Sunday and couldn't stop vomiting enough to post. I will definitely try again this weekend.

Things are going well. The boys and I had appts. on Thursday. Brody has his four month check up. He is now 19.5 lbs and 29 3/4 in. long (98% for weight, 99% for height). He is in 18 months clothing (some 12 mos). He continues to roll on his belly...ALL OF THE TIME and seems to enjoy it better. He babbles all of the time and laughs at us constantly. Brody has learned to spit bubbles. In my toddler class that IS NOT allowed, but with him it is too cute so I have to admit, I kind of encourage it ;). He is absolutely fascinated with his bubby, Kaden. It is too sweet.

Kaden also had an appt. We headed to KC for his. We just had occupational therapy, which we just started last month to work on oral stimulation (trying to get him eating by mouth). He did awesome. I was so proud of him. Of course it took a little bribing (stickers are such a blessing), but hey, it got him focused and ready to work. He is such a big boy. Potty training is going GREAT. He still has his accidents, about once a day...but we actually have been able to get him to tell us that he needs to go while we are out too (which has been hard to do). After his appt we went to Nebraska Furniture Mart. On our way there Kaden told us he needed to use the potty and held it until we got there and made it to the potty. Another proud mommy moment (something only a mommy can appreciate I guess). He is doing unbelievable with spelling. I honestly can say that he can spell more words then not (within his vocabulary, if that makes any sense). He, again, continues to amaze me.

My appt. was due to the fact that I just have not been feeling myself. They took blood to test a number of things. Everything came back within normal limits. They did say that I am anemic, so I have to start taking vitamins again (I am horrible at taking pills and couldn't wait to stop taking pre-natal vitamins, but now I am back on them). I am to go back to see the Dr. if I continue to be nauseous, tired and have a new found pain in my upper abdomen area (which I didn't know existed until the Dr. was pushing around on me...wow it hurt!). No...I am not pregnant...had that thought myself...but 4 home test and one blood test has confirmed it. Well enough about me.

Today after I got off of work my boys (including Nate) and I went to the zoo. We went to something called "Dream Night". It is an evening set up for "special needs" children and their families. It is a free evening of fun. Kaden had a lot of fun. He had his heart set on seeing the monkeys, however the only thing we could find were the orangutans and they were sleeping. He also talks about "big cats" all of the time and said he wanted to see the lions. We found the lions and he decided that they were scary and didn't want to stay in that area very long. He is funny. I forgot my camera but they did give out disposable cameras. Kaden also got a t-shirt and a stuffed animal (a big, SOFT stuffed panda bear). They provided dinner and musicians. Kaden wasn't too into dancing tonight for some reason. When we got back on the road, Kaden said he had fun and signed "more." I think he was already ready to go back. I asked him if we could go again another day and he was definitely into that.

So anyway, that is what we have been up to besides Nate working on the house which seems to be getting closer and closer for move in time. Can't wait!!!

Oh and Jenny, from Zach's Gang...sorry I just found your comment from the end of May (long story). Thank you so much for the award. I haven't had a chance to see which one, but thanks a lot for thinking about us!!!

Sorry that this is everywhere and unfortunately I am not going to proof read so it could be even worse. I hope you got through it without too much confusion!!!

Kaden

Today was Kaden's last day of pre-k. It totally hit me tonight, that he is going to be in Kindergarten in a couple of months...definitely brought a tear to my eye. I can't believe how far he has come, how much he has overcome and how much he has proved doctors wrong. I told him tonight that I think he is absolutely amazing and he just looked at me with an "come on mom" look and nodded his head yes (whatever you say mom!).

So, I just wanted to share what he typed out today:
"new school call kindergarten write you numbers letters look at books play with toys cut paper home for ovilla (meant to be Oliva [cartoon]) is a pig ovilla dress up on ha your bus to animal prade (parade) four sleeps"

I'm not too sure what the "four sleeps" is for, unless he thinks he will be starting Kindergarten in "four sleeps".

I think he seems pretty excited to start his new "big boy" school. I on the other hand can wait :).

Oh and boy do I have some pictures of one cool man. Today, Kaden rode on grandpa's motorcycle down the alley and back (twice, he wanted more). He was disappointed however, because he wanted to ride to his friends house. I told him he will have to wait until he is at grandpa's (grandpa only lives a block from his friend's house).

By Golly, He's Got It

Today Brody has seemed to figure out how to get back onto his back. The first go around was an accident, but the two other times I think it was a real thought out plan he had :). He hasn't seemed to pick it up as fast as he did the rolling onto his tummy, but he'll get it. He is also liking his belly a lot more. Oh and boy does he like putting things in his mouth...toys, blankies, my shoulder...you name it.

Tomorrow is Kaden's last day of pre-k. I can not believe that in a few months he will be in Kindergarten. My baby boy is growing up. I am is such awe over him. He is simply amazing.

So today I read another word he typed out that I didn't know he knew how to spell. He typed out "all done watching the show". I had no idea he knew how to spell watching...he is pretty good about making things plural, or adding "ing". Again, simply amazing.

One last thing...Monday I decided to let Brody taste baby food. He did pretty good, although I know he is still pretty young. We tried the sweet potatoes. He knew to open his mouth when he saw the spoon heading for it, and he moved it around in his mouth pretty good. I just didn't want to give him too much at this time. We will wait a little longer...he just seems so interested when we are eating "real" food around him, I had to try.

Well, it is almost the weekend and I can't wait. Hope everyone has a great rest of the week.

Rolling, Rolling, Rolling

As of Friday night, Brody has learned how to roll onto his belly. Does he like it there, well...no, not really. He doesn't mind tummy time as long as we keep it short and sweet. Now that he has figured out how to roll onto his belly, he does it constantly. Once he gets there, he starts grunting and then screaming. He has figured out how to roll back onto his back. Needless to say, we are continously having to stop what we are doing to help him back onto his back. It is kind of funny!!! Pretty soon he will be rolling all over the place.

Kaden is a SUPER big brother. He continues to be very helpful, giving Brody his toys and wanting to help with diaper changes (I wonder how long that will last). The other day he was telling Brody and I all about Nemo on his communication device. Here is his conversation...

Nemo lives in the cool water sharks haves big teeth sharks haves no hair sharks scary hey brody you can play no no no no big boys

So he had given Brody the Nemo movie when he told him he could play then he took it away after typing no and started laughing. I thought it was funny that he is already teasing him, it probably won't be as funny later on down the road. He is so into the "big boy, little boy" stuff. According to Kaden "big books" are for big boys and "little books" are for little boys. He likes to seperate what he considers baby toys from big boy toys. He is too cute. And wow, he likes to tell us everything he can think up on his communication device. It is so nice to have and for him to be able to put into words his thoughts. He is absolutely amazing with all that he can spell. I have never met any other 4 year old or heard of one for that matter with that great of spelling. I am going to have to video tape him some day so I can look back on it in the future, just to remind myself of just how smart he was at this age...to show him as well.

One more quick story. Today I asked Kaden if he wanted to hold Brody. He reached up to help me put Brody on his lap. Well, Brody has been into "gnawing" on things and what better place then Kaden's arm. Kaden didn't think it was the best place and was quick to give him back. My mom reminded me that it won't be that cute once he gets teeth...ouch!!! Well, I better get going. Tomorrow Kaden has a friend from school coming over to play...it should be a great day for Kaden, this is the first. He absolutely adores this little boy. He talks about him all of the time. I guess the two of them hug all of the time at school. His teacher told me the other day that Kaden's friend had said to Kaden "you can hug me anytime you want." I thought it was super sweet. I have heard nothing but great things about this kiddo and how he treats Kaden. I am excited to see how tomorrow goes.

And Now, For Your Viewing Pleasure...

I finally made myself sit down and download these pictures. Ok, so I downloaded them while I was doing other things, but anyhow they are downloaded and ready to be posted!!! So here goes...there are a ton of them.



















Kaden's first day riding the bus to school. As you can see he is very thrilled ;).


As you can see there are some going way back to Easter...hey what can I say I am a "busy" mommy. There are also some from a trip we made to Hannibal, MO for a Boeckman reunion. I love the one with Kaden on the potty outside...it was hilarious, but when you got to go, you got to go. Kaden is doing very well now on the potty. He has an accident about once a day, not too shabby. Yesterday he finally stood while peeing (twice).

The picture of Kaden with green all over his mouth was of him licking an mm, his favorite candy (he doesn't eat them, just licks them). Then the picture of him in the hats are of him waiting for the ferry boat ride. The one with him and Nate are in the ferry, it was raining so we stayed inside of the boat. The one of Nate (Mr. Stud :)) and then of Kaden with his hood on are when we went to the caves...one of my favorite things we did on the mini-vacation. Our stroller was a little too big for some areas and there was one point where Nate and his dad had to lift the stroller up over their heads to get it through the cave...I was laughing my butt off. The first couple of pictures are the most recent, just took them a day or two ago. As you can see Brody is growing like a weed. He just turned 3 months and is in 12 months clothing. He is a very happy baby. Kaden is adjusting well to him and is mommy's big helper. He helped me change a diaper a couple of days ago...luckily for both of us it was just a wet one.

Things are going well here. But I better log off so I can finish getting things together. Hope you enjoyed the pictures.

Always Rushed...

I feel like the start from the start of my day to the end of my day I am RUSHED. I can not stand that feeling and because of it I think I am loosing my mind...seriously. I forget EVERYTHING, no kidding, EVERYTHING. Well, ok, I remember my name and the name of those I love :).

So, yesterday I went to Kaden's IEP meeting...for next year, when he starts KINDERGARTEN. Oh my...my baby is going to be in Kindergarten. That brings tears to my eyes just typing it. So, back to being rushed. I was not satisfied with the meeting. Not that it was a horrible meeting, but that it was during my lunch hour and I feel like we really didn't accomplish much. I mean, it is going to be a new school, with new staff including nursing (our nurse, who has been with Kaden for about 2 1/2 years will be having a baby right before Kaden goes to school...great for her, sad for us). I really wanted to go over more, A LOT more. I am hoping to meet again before school starts, maybe even with Kaden to give him a chance to meet them and them to meet him (more then just a "hi"). Anyway, I am going to stop here, I am watching a show on autism and it is really interesting. I really do want to post pictures, hopefully this weekend.

Another Angel

June 23, 2008 - May 11, 2009
My heart breaks. Tonight I read that Kayleigh passed away last night in her parents' arms. Heaven has received another beautiful angel. Please pray for her family. She spent her 11 months of life in the hospital. Stop by her blog and leave her family a message. Believe it or not, it really brought some comfort to Nate and I when we could log on and read all of the thoughtful messages you all left when Ava passed away. You can find her button under my friends list.

My dad's cousin has passed away. Again, please send prayers of comfort and healing.

Thank you.

Happy Mother's Day

I hope all you mommies had a wonderful Mother's Day. I saw this on a blog I read tonight and wanted to share it with all of you.

Thoughts of a Mom

By Maureen K. Higgins



Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world.

You are my "sisters." Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

One Year...

So one year has come and gone. This has been the fastest, yet the longest year of my life. So much has happened. First, we lost our baby girl (May 7, 2008). About a month later, I found out that I was pregnant. We had our baby boy, and now we are here again, with tomorrow marking the one year "anniversary" of loosing Ava Rae. I hate to call it anniversary. When I think of the word "anniversary", I think of a joyous occassion...like a wedding anniversary. I can tell you that May 7th was not a joyous occassion for me.

As I sit here typing this in tears, my heart is breaking. I know that I am blessed with my two boys, any mommy would be lucky to have the two of them. However, a piece of me is missing...my little girl. Ava would be a little over 15 months old today. I wonder what she would look like, what kind of personality she would have, what she would be getting into. I think about the future. I wonder how many boys daddy would have had to run off, what she would look like in a wedding gown, seeing her daddy walk her down the aisle, seeing her grow as a person.

I can not type much today, for many reasons. But as always, Ava baby, you are in my heart and on my mind. Our lives are forever changed because of you. You are a gift that was easily accepted from God, a gift that I would never return. I wish your time here with us was longer, a lot longer, but I am happy that I got the time that I did with you. I know that you watch over us, I feel it. My heart just aches for you, it always will I am sure. What I would give to hold you again, to hear you again, to kiss you again. You are my angel. My love for you goes deeper then words. Mommy, daddy, and bubby miss you. Brody is learning all about you already. He stares at your pictures on the wall all of the time. I think he too is in awe of your beauty. Again, we love you baby girl...forever and ever.

Love,
mommy

Shhh...it's a secret

Saturday, Nate and I had a wedding to go to. My parents watched the boys and took them shopping (as they do the first weekend of every month to get new toys and books). We of course, came home late and the boys were already sleeping. So come Sunday, Kaden woke up and grabbed white. First thing he types "like to run Kaden's friends off vent." I helped him with his sentence, so he retypes it "I like to run with my friends when I am off my vent." He then continues by typing "lets go." I couldn't help but laugh. Shortly after he reminds me that he went shopping with grandpa and grandma the day before. He then types "Kaden got mommy disney card snow white mothers day." I laughed and reminded him that it is suppose to be a secret :). He is so funny.

So, as I mentioned before, it has almost been a year since we lost Ava. This Thursday will mark the year. As you all have probably heard over and over again, we miss her terribly. There is not a day that goes by that she is not thought of. There are no words to describe our feelings and the pain that we feel every day although it may not be mentioned. Well, a little while ago I was scheduling appts. for Kaden. I think with my lack of sleep at the time (having a newborn and just returning to work)I was not thinking clearly and scheduled several of his appts. for Thursday. When making it, I knew something was significant for this day, I just couldn't put my finger on it until I got them all scheduled. I am so upset with myself. It is already difficult to go to Children's Mercy. I am nervous and can already imagine how difficult it will be on Thursday. I could put the appts. off, but some of them Kaden really needs and I can not put his needs off because of mine. After a long day at CMH on Thursday, we will come home to go to Kindergarten round up for Kaden. It will be a busy day, but the whole time I will have little Miss Ava on my mind.

I know I need to post pictures, it just takes so much time and I don't have the time to give right now. I will try to do it this weekend.

Still here...

Things have been busy around here. I guess that is what comes with having a baby. Blogging has taken a back seat, although I still try to come on and check out other blogs. I also can say I haven't been in the mood to blog. So here I am...prepared to catch you up with our lives.

My new job is going "well". I like it. Toddlers (2 yrs. old, at that), well, I have my moments. I never realized what it is like to be around a real "terrible two" child. OH MY!!! I am so blessed to have Kaden and it really worries me the possibilities of how Brody could turn out to be at this age :). Hopefully, I won't have to experience it with him. Well, and if we do then hopefully I won't have to get my hair colored more frequently then I do now (and no I don't have gray hair yet, at least I don't think I do).

Kaden is getting so big...as always. Potty training is going well. It has been on and off for the longest time and I think he has finally decided he is ready. When he gets home from school he starts wearing his big boy underwear until bedtime. On the weekends it's all day. He is doing well. This last weekend he had an accident once a day, not too shabby. I am so proud of him!!! He shows me more and more how much he knows and how much he wants to say with his "white". This last weekend I found out that Kaden's friend from school (one that he talks about all of the time and gave his phone number to so he could come over and play) lives a block from my parents house. I told him and he then typed "Seth lives by grandpa grandmas house." So later I asked him to tell grandma where his friend lives and he types "at home." DUH MOM!!! Yesterday he had a doctors appt in KC. After getting home we were going to go to my parents and he types "next stop grandpa and grandmas." What a little smarty!!! I also taught him "Daddy is a goober." Great fun.

As I said Kaden had a doctors appt in KC with Cardiology and PT. His heart looks great and the abnormality that they thought they had seen (his tricuspid valve being lower then it should be) they aren't quite sure if it really is there. PT was just to look at how he walked. His ankles roll in a little. There is not much to do about it right now. His legs are like twigs with little muscle right now and his feet are flat. She explained it is from him not baring weight on his feet for a long period of time due to his illness (which we already figured). Other then that all seems to be going well with Kaden besides a little cold or something we all seem to be going through.

Brody is growing. He is such a sweet, happy baby. He smiles all of the time and a couple times I have heard a true laugh. He too is going through some type of cold. His poor eyes (along with Kaden's ) are draining horrible crud. I really need to post pictures of him, but I am lazy enough as it is to blog, pictures is almost a chore right now for me.

It has been almost a year since Ava has passed away. I can't believe it has only been a year. It feels so long ago. I miss her every day, that hasn't changed. I look at her pictures and long to hold her. I try to remember how it felt holding her. Today an image popped in my head with me holding her on a pillow in the PICU (in the big room we were sharing with another baby). I remember sitting in the chair close to the window. I remember how things were set up and it was almost like my mind was taking me back to that time. I am sad. The crazy thing about it is that I am also happy, happy with the life that I am living (who knew you could live life feeling two total opposite feelings). I am happy that Kaden and Brody are in my life. Of course things would be better if Ava was with us, but who knows if it would have been better for her. I have to make myself believe that this was for the better (that sounds horrible). Maybe she was in greater pain then we knew, or maybe she would have endured more pain then I would have wanted to see her in...not that I would want her in any kind of pain. As I have said before, I thank Ava for not leaving her daddy and I with any kind of decision to make, as I don't think I would have been strong enough to let her go. I know that God was with her. I can not say that I do not think that she was scared, because I could see fear in her eyes...as anyone would have had with not being able to breath. I do not think she was scared or feeling pain for a long time, but she did feel it. I am sad and it makes me sick to my stomach thinking that those are the last feelings she might have felt. Did she feel me holding her? I feel horrible for crying during her last breaths. I can't not remembering telling her I love her before she passed. Was I too caught up in my own emotions and feelings? I CAN'T REMEMBER. Why is it I can remember the details of that day, except for this? I remember going to her bedside while they were performing chest compressions and not being able to breath myself so they had me sit. I remember the doctor putting her in my arms and the nurse bagging her for a small period of time. I remember holding her tight and crying. Did I tell her I love her? I'd like to think she knew I loved her. Her first smile was at me, and I got a lot of them. I know she recognized me. How I wish I could have made life better for her. How I wish that I would have known how things would turn out...I could change somethings. I would NEVER change that she was in our lives. I would change little things that happened, like me spending every minute with her, taking more pictures and definitely taking more video. The feeling of frustration with just everything is so overwhelming at times like now. However, I think I am going to end it here before I get too sick to my stomach. I could ramble on and on about my feelings, but luckily for you I will stop here.

OH RATS!!!

Easter was good. Kaden wasn't into coloring the eggs, but he didn't mind hunting for them. He was really excited about the goodies he got in his Easter basket...one of the things being a collection of Max and Ruby dvd's from grandma and grandpa (one of his favorite cartoons). So on to the "Oh Rats"...either Max or Ruby said it (not sure which one, I missed that part) but Kaden typed it out on his "white." I explained to him that people say "oh rats" when they mess something up. Then daddy comes home and Kaden has to show him the new phrase he learned and typed it out again. Nate asked him if he knew what it meant and he typed "oh rats mess up." He then goes on to tip over his toy box and types "oh rats" again. I told him he can't do something on PURPOSE and say it. So he starts knocking the toys out of the box that didn't fall out, all the while repeating "oh rats, oh rats." I gave up and started laughing!!!

99.8%

Today Brody had his 2 month check up. He weighs 15 lbs 7 oz and is 27 1/4 inch long. This puts him in the 99.8th percentile. So basically if you look at it, out of 1000 babies there are only 2 babies taller then him. He has gained 3 lbs and grew 2 inches since his 1 month check-up.

Brody is doing well. He is such a happy baby. He is smiling a lot now, and cooing like no other (he has so much to say). I think pretty soon we will be hearing him laugh.

Kaden is doing well too. He started riding the bus yesterday to school. I am not sure how much he likes it as he still request that I take him and pick him up. He does however, accept the fact that he is riding it and doesn't get upset about it. I can not believe how fast he is growing up. It makes me so proud but sad at the same time. He is so funny too. When we pray at night, Kaden will sign something that usually happens during the day to add to our prayers. Well the other night he signed something that I couldn't figure out (some of his signs look the same). He got frustrated and asked for "white" (his new talking device). I told him that God understands his signs and that I would get him white when we were done saying our prayers. We finished and I stayed true to my word. When he started to type what he had been signing it read "wash hands bathroom." Well, at the time "white" was not working properly and not reading the words aloud. As soon as I started to read "wash hands bathroom" back to him, he puts his hands together to "finish" praying. I thought it was the cutest thing and wish that it was something I could have caught on video. Again, this little guy never fails to amaze me. He has the greatest personality and I can see it coming through Brody as well. I am the luckiest mommy!!!

Here's the picture

Here's the picture of Kaden and his "girlfriend".

Thanks Cristen!!!

Kaden's got a girlfriend...

Kaden loves the idea of having girlfriends. When you ask him if he has a girlfriend he always says "yes." Sometime it is his nurse Cristen and other times it is girls from the early childhood class he use to be in. Well, today Cristen sent me a picture of Kaden via text and what can I say...Kaden is the man. The class was sitting in circle time and Mr. Kaden was sitting next to a girl in the class with his arm around her. It was way too cute, he is just way too cute. I wish I could download it but I don't know how to. So tonight when I put him to bed we were talking about him and this girl. I asked him if he put his arm around a girl today and he said yes and started laughing. I then started chanting "Kaden's got a girlfriend, Kaden's got a girlfriend." He thought that was hilarious. Then when we were praying, he signed "thank you for girl." I was trying not to laugh.

Kaden you are absolutely amazing. I know I have said it before, but you just amaze me each and every single day. I am totally in love with you and will be for the rest of my life. I thank God for giving you to me, as well as your sissy and bubby. You guys will always have my heart in your hands. I love you baby, forever and ever.

WEAR YOUR TURQUOISE

Wear your turquoise tomorrow for Kaden as well as all of the others who have battled a congenital daphragmatic hernia.

Pictures and life...

Kaden supervising the guys working on the house.





So yes, I have finally posted more pictures. I am getting horrible about it because I really need to copy my memory card on a CD (it's getting really full, which in turn takes forever to download on to the computer). Anyway, as you can see both of my boys are getting big. Kaden is getting better and better at being a big brother. Brody just loves Kaden. When he sees Kaden, he just stares at him, he is really fascinated with Kaden (who wouldn't be, he's the coolest kid EVER : )).

The house is coming along. It won't be long until we can move in. I am getting very excited. I just can not wait for them to get all of the sheet rock up so I can paint (probably about the only thing I can actually help with and not screw up!!!). I also accepted a new job this last week. I actually wasn't looking for one, but it came at good timing. I was just getting burnt out at my old job. I will be a toddler teacher at a daycare. I actually can bring Brody there, but as of this time he is on the waiting list. The only "problem" is the pay decrease. I am definitely going to have to learn to be a little more frugal.

This last week I spoke with the elementary school principal where Kaden will be attending. I am very excited about it and very optimistic. She seemed very accomodating and excited to have Kaden there (as we all know it shouldn't be any different!). Well, tonight the school had a carnival (inside of course) and we took Kaden. He had a good time, but seemed more interested in checking out the classrooms then playing the games. They had one room set up as a dance room. The high school's dance team was there teaching kids how to do the electric slide. At the time, Kaden was the only kid in there and he had about 5 high school girls to himself. They were really good with him and as you have probably seen in previous posts he loved the dancing. He may not of danced the electric slide, but he did show his moves...and man can he move :). We had a good time.

Well, that is about all that has been going on. I hope everyone who got snow (like us) is keeping safe.

Turn Your Volume Up...

Today I heard a song that makes me think of Ava. My friend told me about this song but I had never heard it, well until today when it came on the radio on my way to pick up Kaden from school. It definitely got the tears going. I downloaded it onto the blog. Scroll down to the bottom of this page and you will see a purple box with different songs on it. Click on "Sissy's Song" by Alan Jackson (#9). Listening to this song makes me sad and happy at the same time. It is hard to explain, but my heart feels "warm" listening to it. It is like he is singing this song about Ava, as if he knew her. We miss you baby girl.

I started back to work yesterday. It was a long day. I could not wait to get home. At least the week seems to be going by pretty quickly. I was suppose to start Monday but we had to take Kaden to Children's Mercy. His mickey button (g-tube site) is horrible. He has group A strep, but the granuloma (spelling???) tissue is raw and bleeds all of the time. It will probably have to be surgically removed. Poor guy.

As of Brody, well he continues to grow...like a weed. My little 6 week old is in 6-9 month clothing. Today when I came home from work, I was just in awe looking at him laying on the couch. He is so long. He doesn't look like a 6 week old at all. Kaden is doing really well with him. He is pretty helpful, I think his favorite thing is to help mommy burp Brody but he also helps carry his carseat and feed him. He is in to giving him kisses, but most of the time it takes us to ask him to kiss Brody. So he does, without hesitation. What a great big brother Kaden makes : ).

Well, I hope you took time to listen to this song. I know when I hear it I will think of my Ava.

Happy St. Patrick's Day

Happy St. Patty's Day. We all were safe today and escaped any pinches by wearing our green. I actually put a new outfit on Brody, the size...6-12 months and it actually fit.

Well, today Kaden and I took a trip to the hospital to visit his pediatrican. I have noticed since Sunday that his g-tube site is looking really bad. It really hasn't looked great for a long time now, but lately it has been leaking and bleeding a lot. Then Sunday it looked a little swollen and then red. Last night he said it hurt and I asked him if he needs to go to the doctor. He said yes. For Kaden to say yes, it's got to hurt pretty bad (either that or he has realized that he gets stickers when he goes). The doctor thinks it might be some type of infection, but the culture takes about 48 hours for results so she has started him on antibiotics just in case.

It was a beautiful day today, over 80 degrees. When we got home I got his truck out and he drove it for a little while. I almost put the fear in him to the point that he was done at first. I didn't realize it was on the fast setting and he took off, forgetting from the last time he drove how to stop. He finally stopped and was very upset. After me talking him into continuing (it took me a while to get the darn thing out of the yard, and caused me to sweat, we were going to be out there more then two minutes darn it), he realized "oh yeah, it's not so bad" and wanted to drive to grandpa's. Instead we drove down the block and back and he was ready to go in.

I am amazed by Kaden every day. He is such a joy to be around and has the greatest personality. I know that Brody is intrigued by him. He sees Kaden and just stares and reaches out towards him at times. Kaden enjoys being a big brother (I think), well, most of the time. Last night he told me that he (Kaden) is happy and that Brody is sad because he cries (Brody was sleeping at the time). Then tonight while we were praying Kaden signed "thank you for my toys, thank you for baby's toys, thank you for mommy, thank you for daddy, thank you for grandma, thank you for grandpa, thank you for nana" then makes sure we mention Brody. It's very cute.

Not much else is really going on right now. I did take Brody to the doctor last week for his 4 week check up. He weighed 12 lbs 7 oz and is 25 1/4 inch long. He is such a sweet baby and does very well sleeping at night. We don't go to bed until after midnight most nights but he doesn't get up until around 5 am most mornings for his feeding. I know many think that they should eat every 3 hours and that I should be waking him up at night, but I agree with those who say "never wake a sleeping baby : )" besides I talked to his pediatrican about it and he says it's alright!

Missing My Angel...

The title says it all. I miss Ava. I know it's expected, but some days are worse then others, or rather month. I think about Ava all of the time, but I go through these spurts of remembering the sad moments. Lately, I haven't been able to get the day that she passed away out of my head, I pretty much live it over and over again, step by step. It amazes me how I can remember EVERYTHING that happened that day, but I can not remember how Ava felt in my arms, I can not remember what she smelled like, I can not remember all of the good things. But the memories from May 7th felt like it was only yesterday, however it feels like she was here so long ago. That was the worst experience, and nobody should ever have to go through anything like it. I know that I should be happy that Ava is not experiencing pain, and I am, but I wish it were under other circumstances...for instance that she was healed here on earth. As you have read in our previous post, there is a surgeon in Boston that repairs these hypoplastic left hearts...he makes them whole again. It makes me sad and basically sick to my stomach wondering "what if?". What if we would have known about this? Could we have gone to Boston to get Ava's heart repaired? Would it have worked? Would Ava still be here with us?

I know things happen for a reason. Trust me, I KNOW, we have experienced it one too many times. Maybe it's on my mind because of all the deaths that have been happening around us. In one month, 3 people that I personally know, have passed away. My dad's cousin is laying in a hospital, in a coma fighting for his life.

Many people say that death is nothing to fear, but it is my biggest. I am in fear of dying too young...I am a mommy and I want to be here with my kids forever. I am scared of family members dying. I think of things that can go wrong all to often, I know...definitly not healthy. Is that normal??? I think I am going to end this post before I make myself have nightmares when I get to bed.

Sorry, this ended up way off of where I was going. I just started typing away.

Title Change...

As you may have noticed, I have finally changed our title. I liked all of the suggestions, but this one definitely caught my eye. Thanks to you all for the help, I appreciate all the creativity.

A special thanks to Sam for the blankets. We LOVE them. Kaden cuddled with his tonight as he fell asleep...too cute.

Helping Tucker's Heart...

Tucker was born in 2005 with Down Syndrome and a heart defect called Hypo-plastic left heart, the same heart defect that Ava was born with. He has undergone two out of the three heart surgeries required for this heart defect. However, even with all three surgeries, it is not a guarantee for a long life. His parents have found a surgeon in Boston that can repair his heart, giving him a whole heart and a very active, full life. This site has been put into play to help this family get to Boston, to offset cost for travel, room and food while they are there. The surgery is schedule for April 13, 2009. Please visit this site and see all the different raffles you can enter to win and help this family at the same time. Tucker is a beautiful little boy and you can read more about him and his family by clicking the button above but also visiting his mommy's blog site (you can find it on my side bar under The Bryant Family - Tucker. Thank you for helping this family.

Getting Older...

Yesterday I talked to a friend from high school about our 10 year reunion. 10 YEARS!!! That is unbelievable to me and definitely puts it into perspective as to exactly how old I am getting. Then tonight I found a picture of Nate and I on another friends facebook page. It almost made me laugh. I am not exactly sure how long ago this picture was taken, but I want to say about 5-6 years ago. Looking at it makes me want to pinch Nate's cheeks : ), he looks so adorable (AWWWW).

HELP WANTED...and pictures

I have been trying to think of a new title and really wanted one by the time Brody came into this world. However, as you can see I haven't really come up with anything worth hanging on to. So here is where you come in...I NEED HELP!!! I want all three kids involved. For example one that I thought of is "Two Boys and an Angel" but I wasn't too fond of it and know there is something better. Please give me ANY ideas you may have!!! Thank you (in advance) for your help.

Pictures...



My poor bubby...not feeling well and cuddling with his "babies" also known as stuffed animals


still not feeling well but getting comfort from his "babies"