Another picture of the belly

This is a picture Kaden took of me the other day. The date on the picture is wrong...I think we took it on 12-27. Believe it or not...the stretch marks are from Kaden...but goodness they just look wonderful!!! So far I think I have been pretty lucky with her, I don't think I have gotten any from her...yet. Oh, and I do have pants on : ), they are just hard to see!!!

Believe in Santa!!!

Kaden waiting patiently for his present !!!(Christmas eve)

Showing mommy what he got.
Christmas day...opening presents.

He actually had the hang of it...opening presents on his own!!!

Christmas eve was spent at nana's house, as always!!! The family gets together and opens presents from nana and nana opens hers from everyone. Afterwards, Nate, Kaden, my sister, nephew and I went around town looking at Christmas lights. We did not stay out too long because it was late and Kaden was a little on the fussy side. We did however see Rudolph's red nose in the sky!!! That made the boys pretty excited. When we returned home, Kaden put out the food he made for the reindeer and then we picked out some of the cookies he decorated earlier and left them out for Santa along with some milk. We read a few Christmas stories in bed and shortly after Kaden was out like a light.

When we woke up in the morning I told Kaden that I think I heard Santa last night in the living room. He got really excited and started pointing towards the bedroom door...like hurry up and get me out there. When we went into the living room he started signing Santa and pointing to the presents under the tree and then signing "book". After all, he did ask Santa for a book. I then showed him the plate we left with the cookies and he signed "daddy" and pointed to my phone. Nate was at work so we called daddy and Kaden signed "Santa" again and pointed to the tree and then signed "cookie, milk, all done." It was all too cute. It is so much more fun now that he understands a little better. What was even better, was that when Nate came home and we opened presents, Kaden did it on his own, we didn't need to help. At first he did seem a little disappointed when he opened a toy and not a book. As he was ripping the wrapping paper he would see a toy and push it off to the side and sign "book." After a few toys he decided it wasn't so bad getting the toys either. At least this year Santa didn't bring clothes!!! When we went to bed that night Kaden kept signing "Santa, cookies, milk" and pointing to the bedroom door. I had to explain to him that Santa only comes once a year because he is a very busy guy. I think he accepted that excuse. We had a wonderful Christmas, now we are just trying to get over colds. Kaden and I seem to be passing it back and forth to each other. Nate has been pretty lucky so far. He had a little something, but it passed fast. Again I hope everyone had a wonderful Christmas and that you all have a safe and happy new year!!!

Merry Christmas!!!

I hope everyone had a wonderful and safe Christmas!!! I will be posting more hopefully tomorrow when I find more time. About finding time....I have Christmas cards still sitting on a desk here at home...what a wonderful place for them to be since Christmas has come and gone. I do plan on sending them out, hey maybe even tomorrow. It is kind of crazy how time flies, especially as you get older. So sorry to all of you who will receive them late (maybe I can have them out before the New Year!!!). Well again...Merry, Merry Christmas.

Let it Snow, Let it Snow, Let it Snow

As you can see, we received a good amount of snow last night and this morning. Kaden has never really been out in the snow so Nate decided that the two of them would build a snowman. The snow was not wet enough to stick together and Kaden was quick to want to go back in. Who can blame him? I went out to snap some pictures and I almost froze my butt off. Nate bundled Kaden up pretty well though and for the gloves, well, we had some mittens that worked well, but the last time we went to Wal-Mart Kaden took them off before we had a chance and we lost one. I have another pair for him but they are too big and will not stay on. So we settled on two pairs of socks...I know, but what's a boy to do without something to keep his hands warm? I am on a mission to find him a good pair, though. You wouldn't think it would be that hard, but it seems like everyone is making the really thick pairs that do not have elastic tight enough around the wrist to keep them on. If anyone knows were I can find some please let me know.

So I woke up yesterday to a nasty cold. I am already so fed up with it. I have a stuffy nose and the worst pressure in my head and one of my ears. I slept on the couch last night, hoping that I could keep Nate and Kaden from catching it. However, Nate had to work today, so it was just Kaden and I. I felt kind of bad because I am sure Kaden felt a little neglected today, I tried to keep as much distance between us as possible. Don't get me wrong...he did make sure he got attention when he really wanted it...and it was really hard remembering not to kiss him, but all in all I think we made it through the day alright until daddy came home. Tonight he seemed a little whiny, I just hope that he hasn't already caught what I have. The past few days I have been giving him cold medicine because he has been coughing up a lot of "yuckies," but has still been in a pretty good mood. I know if he gets what I have, he probably won't be as happy. Well, I am done babbling for tonight. I hope everyone has a wonderful weekend and remember only 9 more days until Christmas (when am I ever going to get all of my shopping done???)!!!!!

Baby Ava's Better News Than The Weather

Here are some of the sonogram pictures of baby Ava that we received today. She sure does like keeping her hands by her face and boy, what a mover. The sonotech commented on the amount of strength she has because she continously tried to kick the probe off of my stomach. She was claiming her domain!!! We received pretty good news. I pretty much have no worries when it comes to the Turner Syndrome. Our main focus right now is her heart. However, the doctor did say that they did not see any fluid around her heart, unlike past history, great news!! We were able to see her lungs working and her diaphragm moving. The doctor said that was really good news...she is making her lungs stronger by working them out now. All her measurements were excellent...she is actually measuring at 33 wks 1 day...a whole week more than I actually am. She is about 4lbs 9oz at this time. The doctor said that as of now everything (besides the heart defect) is looking good. He did remind us that things will be hard for her after she is born...but for some reason I am not too worried. My babies are unbelievably strong (they must get that from mom, ha ha). I have all my faith in God and Ava at this point. I am so excited to meet her and can not wait to see who she looks like...mommy or daddy. I still haven't determined who Kaden resembles, I have heard both. Lately I am hearing that he has my eyes...but that really doesn't say much!!!! We are continuing to get Kaden use to the idea of having a baby sister and being a big brother. I think he has mixed emotions : ). He is really good with babies, saying that I have really only seen him with my cousins newborn, but he loves to hold him and kiss him. This little book lover even shares his books with the my cousin's baby. Lately he has been picking out books for us to read to Ava and he even shows her the pictures!!! I think that he is going to be great (I hope)!!!!

Now to the weather...ice, ice and more ice. Lucky for us it started melting today, however we are expecting snow tomorrow, 2-3 inches. We lost power for about 30 hours (Tues morning - Wed evening). My parents had a generator that we used to keep Kaden's vent and other supplies going. I was so stressed before the generator because it didn't work, being that my dad is mister fix it he got it going for us. We have many friends who unfortunately are still out of power and basically all we know is "who knows how long it will take, it could be until the 22nd." I just hope for everyones sake (and sanity) that power is restored to all FAST!!! I hope all is going great for everyone and I want to thank you all for reading and leaving awesome comments. Thanks, it helps make my day!!!

Promised Pictures

Here are some pictures I promised of the Christmas parade and of the belly!!!!!

Kaden with his cousin Kolton, enjoying the parade.

Nate's brother James and the boys.

My sister Melanie with Miles.

Kaden and the belly.

Aunt Melanie and Kaden braving the cold weather.

Kaden, mommy and daddy all bundled at the parade.

On the Road to Diaper Freedom!!!!

Kaden is finally getting the whole potty idea. While I was at work Thursday, Nate put Kaden on his "big boy potty" and he actually went pee-pee!!! Nate and Kaden's nurse Cristen made it a big deal for him, and he surely enjoyed the attention. I talked to him on the phone and when I came home for lunch, he was very eager to show me the pee daddy and him saved in the potty for me to see. That night we took him to Wal-Mart to get a book for being such a big boy. On Friday, when I came home for lunch he signed potty to me. So I put him on the potty and he did it again. This morning he signed potty and pointed over to his DVD's (he has an Elmo potty video). I asked him if he wanted to watch Elmo go potty and he signed yes (which looks very much like potty). I then asked him if he needed to go "pee-pee," he again signed yes. I sat him on his potty and within 5 to 7 minutes he went "pee-pee" again!!! Yea, I hope he picks this up quickly so we can get rid of the diapers before Ava comes. He is so proud of himself. When he arrived to school on Thursday he signed potty to his teacher first thing, telling her that he used his big boy potty. We even bought him big boy underwear. I know it seems kind of fast, but Nate thought it would be a good idea to let him see how it feels to wear those instead of a diaper. He loved them. Nate put them on him just for awhile and he couldn't leave them alone. I am so excited for him. It's crazy to think of how proud we feel as parents just because of a little pee in the potty.

A Eventful Weekend

Even with mommy sitting with Kaden, he still wasn't too sure about the whole idea.

We had a very eventful weekend. It started with Thanksgiving dinner with my family. Everything went good, and boy did we stuff ourselves. Friday was Thanksgiving dinner with Nate's family. Kaden had a blast playing with everybody. The Boeckman side definately has more kids to play with. Friday night was the Christmas parade here in town. We went with my parents, sister, nephew, and one of Nate's brothers and his two boys. It was fun but very cold so we didn't wait to take pictures with Santa there. Saturday my sister, nephew, mom, Kaden and I decided to go to the mall to see Santa. The day started off very "good." We were running later than we wanted. On the way my sister's car got a flat, so we called my dad and he came to change it. We had to stop by the police dept. because Nate took the SUV to work and it had the stroller in it. We decided to just switch vehicles because of "all" of the room in my sister's car. Well in the process of changing things over I some how managed to lock my keys in the car. I called Nate and he had one of the other cops working with him drive by with the keys to unlock the door for us. That was about the end of the "fun."

We get to the mall and lucky enough for us there was a small line. Kaden noticed Santa and kept pointing at him and staring. So I thought this whole picture thing was going to be a piece of cake. To my surprise, it definately was not. I took Kaden up to Santa and Santa reached for him. Kaden hung on to mommy for dear life...that's how I ended up in the picture. We took several pictures and decided on the one above, it was the only one that did not have him crying in it. It's funny though, when somebody asks him who he saw, he signs "Santa" and then he signs "cry" to let everyone know that he cried. He then waves "bye-bye" to let them know that he did say bye. He wants to read all the Santa books he has now, but when I ask him if we should go see Santa again, he shakes his head "no." Oh well, we might try again and see how things go. My plan is to keep talking Santa up as much as I can. Hopefully it works.

Kaden's has some new "tricks." Kaden is now saying "mama" and "uh-oh." I think I posted the "uh-oh" already, but he actually uses it as he should. It's very exciting for us. I can not remember if I posted earlier that he can now pull himself to a stand and walk holding on to furniture. He is growing so fast, and just in time to show his baby sister that he is a big boy!!!

Well, I plan on posting pictures from the parade. I have to get them from my sister first. I brought my camera, but unfortunately the battery was completely dead. I hope everyone had a wonderful weekend and an even better Thanksgiving.

Getting Ready for Christmas

Today Kaden and I put up our Christmas tree while daddy was at work. He put a few of the ornaments on himself, but my back starting hurting me from lifting him so I had him hand me the ornaments. He was a really big helper!!!

Kaden is now pulling himself up to a stand all by himself. He is very proud of himself. Who can blame him. He wants to walk everywhere (still with some assistance). We even made it up the stairs the other day on our way to school. I think that he will be walking all by himself pretty soon. The only problem we will probably have is that darn ventilator. It is way to heavy for him to bring along while he is walking. We will figure it out though, just like we have with everything else. Oh, he also can say "oh, oh." He is getting so big...and fast. Well, I am not sure if I will write an entry before Thanksgiving, so I hope everyone has a wonderful and safe turkey day!!! Take care.

The Results Are In

I received a call today from one of the geneticists telling me that she had the results from the amino. They found that Ava has what is called Turner Syndrome. She believes this is the reason for the heart defect. I didn't learn too much at this time except that it only happens to girls and it is a missing X on the 46th chromosome. However, on one of her cells she is missing this X but on another of her cells she has an extra X, so it looks like this...45X and 47XXX. I honestly can tell you I have no idea exactly what this all means right now and probably will not fully understand it until we get a chance to talk to genetics. Ava should be able to function at each level normally, although she could have difficulty in math. She might not go through puberty and she most likely will be small in size. The average height for a girl with Turner Syndrome reaches 4'8". The doctors can start her on hormones to help with her growth. She could have some abnormalities in her features as well. I don't know at this point what all to expect. She did tell us that right now her heart is the big problem. It is really hard to explain everything, especially when I feel like I don't know anything. I will definitely update everyone once I find out more.

After I put Kaden to bed I will add a video of Kaden's new trick.

Happy Halloween

Kaden is getting ready to hit the town in search of
candy!!!!



Here is Kaden showing off his monkey costume.





I think he has had enough of mom taking pictures.




Kaden is looking through all of the candy he collected.


We had a blast taking Kaden trick or treating. This was the first year Nate and I took him out. In the past we went over to grandpa and grandma's to help pass out candy, but this year we decided to let him have the full experience. The plan was to go out with my sister and nephew. However, those plans didn't quite work out since my nephew didn't get a nap and decided once we were out he did not want to trick or treat. So we borrowed my nephews candy bag since we didn't bring one for Kaden, we were not planning on collecting any candy since he won't eat it. We were thinking that Kaden going to the door and getting candy my entice my nephew...it didn't. So my sister and Miles went home. Kaden enjoyed going to the first house so Nate and I decided to take him to a few more houses. Well, Kaden was having a blast and we ended up trick or treating the whole two hours. He was so cute. Nate and I would take a very excited, squealing Kaden to a door and he would get his bag from me and hold it open for the candy. After receiving the candy he would sign "thank you" and wave bye-bye. After a few houses he had his routine down and didn't need our reminders to say thank you or bye. He even started saying "thank you" all the way up to the doors.

There were a few home owners who wore the scary masks. The first one we went to, Kaden had big eyes and was just staring at him. Nate, the homeowner, and myself were laughing so I guess Kaden decided that it was funny too, and began to laugh himself. So the rest of them that he saw he thought were pretty hilarious. I even overheard one mom telling her little girl who was probably in the 4th grade or so that "that little baby is up there, you should be able to go up there." Kaden had a ton of admires, including a 4 year old little girl. She came up to Kaden and began to rub his cheek and hold his hand all the while telling him how cute he was. This lasted for about 3-5 minutes and then Kaden had enough and began to wave bye-bye to her. Nate and I were so excited that Kaden seemed to have a blast and can not wait to take him next year. He did so well and was excited throughout the whole thing. Our next tackle will be to try and get a picture with Santa Claus. That one is still a maybe, it is just during the sickest time of the year so we will see. Our luck, Kaden will probably be more scared of Santa Claus than he was of the scary masks.

We Are Home

We were able to go home last night. We got in at about 9:15. Boy, was Kaden excited and very eager to sleep in his own bed (well, our bed). The doctors/surgeons could not determine if his patch was popped for sure or not. Basically we were told, even if it was popped they don't know for sure right now what steps they will take to fix it because he has been through so many different procedures to correct it already. So, since he was able to handle one of his feedings they let us go home. The doctors also stated that they think that he could have had a slight bowel obstruction. If that was the case, since he is tolerating his feedings it seems to have correct itself. Kaden did so well at the hospital. He was more trusting this time, well, until they needed to put in an IV.
I think this was one of my most frustrating stays at the hospital. It started with the almost 8 hour wait in the ER before moving into the PICU. Then we had all new doctors and surgeons to deal with who did not know Kaden at all. The most frustrating of all was them not being able to tell us whether his patch was popped or not. Nate and I felt like they thought that it was but did not want to believe ot for the fact that they did not know how to correct it. We were up there for 3 days with no answers and a little boy who seem to be in good spirits that was stuck in his room in the PICU. I just pray that we don't have to go back anytime soon and that the patch is still intact. Kaden seems to be doing well and right now we are about to put on his costume and go trick or treating!!!!

A Quick Update

This won't be long, but I just wanted to update everybody. Yesterday morning I took Kaden to the ER. They believed that he popped his patch on his diaghram again so we headed down to Children's Mercy. They have kept him overnight and plan on keeping him another night. The doctors can not determine if his patch is popped for sure. They have done x-rays and then a CT scan today and still no answer. They want to observed him again tonight and I guess determine if he can go home tomorrow. Poor guy, he was doing pretty well trusting the nurses and everything...then they had to put in an IV. I hate having to bring him up here, not because of the nurses or anything, I guess just because of the things that come with being at the hospital. Well, I will try to keep you all updated. Please continue your prayers for Kaden. Hopefully everything is great with his patch and he won't have to go through another surgery. Thank you all again for the thoughts and prayers.

Another Doctor's Appt.

Yesterday Nate and I had another doctors appt. in Topeka. It was pretty long, but it went well. We talked to genetics and honestly didn't learn much. They want to draw more blood from Kaden to look into more options. So far they haven't found anything with him to say that it is genetic. When I was pregnant with him they did an amniocentesis and it came back that Kaden's chromosomes are normal. We went ahead and decided with Ava that we would do the same thing. The main reason we did one with her is because if she happens to have a defect that is basically fatal we would not want to put her through all the surgeries. That may sound harsh, and I think if you haven't been in a similar situation it may be hard to understand for some. The sonotech did say that the fluid around her lungs looks better and we talked to the pediactric cardiologist. He honestly made me feel better about the whole situation. If there is nothing else "wrong" with Ava, it seems she has pretty good odds. He explained that she would have to go through the first surgery shortly after birth and hopefully only be in the hospital for 3-4 weeks. She then would do the second surgery at about 6months and then again at about 3 years. They would have to keep a close eye on her, possibly having appts every week or so. I feel less anxious about the whole ordeal now that we have been more informed about it all. Now we just have to wait for the results from the amnio. I do feel that all of the prayers have been helping.

We got more sonogram pictures. I really think that she is smiling in one. I will try to post it soon. It was really cute, because yet again she moved the entire time during the sonogram. She also had the hiccups during half of the time. I didn't realize that babies could have the hiccups in-utero. I thought it was such a neat experience to see that. Oh, I almost forgot about Kaden's experience really getting to feel his sister move. It was before he was going to bed and she was dancing away so I put his hand on my belly. She moved and he just looked at me with wide eyes. I told him that his baby sister kicked him and he started smiling. He then placed his hand on my belly again (by himself) and she kicked him again. He started smiling again. He then grabbed his toothbrush and began using it on my belly. He told me (using sign) that he was brushing the baby's teeth. What a great big brother!!! Well, we are at my parents house right now and Kaden is saying he wants to go home and go to sleep. We thank you all for the continuous prayers!!!

Things to think about

Nate and I have been wondering how easy it is for someone to be diagnoised as autistic. After talking to Kaden's doctor, it put question in our minds. To me, Kaden has some similarities to other children I have been around with autism, but some of the things the behavioral specialist checked off has made us wonder if him responding or acting the way he does to somethings isn't just because of everything he has been through and how his life has been so far. As Kaden's doctor said, you can't check blood or chromosomes for a diagnois, it's just basically a checklist that diagnois these children. She also stated that being with Kaden since birth, she has seen him progressing in such an amazing way, which I guess is not common with children who are autistic because they seem to regress. The way I see it, he has been diagnoised with autism, he may not be for sure but not knowing 100% that he isn't, I feel we have to approach it as if he was.

On a light note, Kaden has been cuddling with mommy's belly (and baby Ava) lately. Yesterday, he had his elbow on my belly with his head in his hand and she just began kicking his elbow. He either didn't feel it or just didn't care because he didn't move at all. Tonight when getting him ready for bed we did his ritual. We read a book, prayed, and then gave mommy and daddy kisses. Well, tonight he was so eager to give his baby sister a kiss, via mommy's belly and just began to rub his hand over mommy's belly. After his kiss, little Ava began moving like crazy. I think she already loves her big brother (who wouldn't)!!!!! I am excited to see Kaden with her. I think he will be a great big brother (at least I hope). Well, good night and thank you all for your continued thoughts and prayers. It is really reassuring knowing that Kaden and Ava have a lot of people praying for them.

Kaden's Doctor Appt.

Well, today was a very long day. Lucky for us, Nate was able to get off of work this morning to go to the appt. The doctor's appt went alright. Kaden had fun for part of it because he was able to play!! The behavoiral specialist wanted to see how he interacts, and for the most part he acted the same as if he were at home (which was kind of a surprise to me). She did diagnois him as autistic. Nate and I had some thoughts about this before hand. Since I work with some children with autism or aspbergers (along with many other mental health issues) I have started noticing some similarities between Kaden and some of the kids I see. The specialist did say that if she had to guess Kaden would be able to function mentally on average or above average of peers of the same age group. To me it sounded as though his biggest downfall as of now is socially. There are so many reasons to this, really too many for me to list right now. Don't get me wrong, he is very sweet natured and loves attention but when it comes to peers of his age he doesn't really make an effort or seem to feel the need to interact with them. Luckily this has been caught early which should be easier for us to work with him. It was important for us as parents to know whether or not austism (or what have you) was part of our lives. Knowing this will now help Nate and I as parents do things with Kaden in a different way if need be. We have a lot of learning to do. If anybody knows anything or anyone we can talk to we would appreciate all of the advice we can get. I am blessed to be working in an enviroment where I should be able to talk to someone who knows a lot about autism. That is my plan for tomorrow!! This has not changed how we feel about Kaden in any means. He is one special little boy who has captured the hearts of so many. Nate and I are so totally in love with him there is nothing that would or could ever change that.

Preparing for Kaden's appt.

Kaden has an doctor appt tomorrow. I am kind of nervous...not too much because of the appt. but because I will probably be taking him by myself. I have not yet done this on my own. I am kind of scared driving with him for two hours and trying to keep him happy let alone there is a flash flood watch for KC tomorrow. I am sure with the rain and the traffic my blood pressure will be through the roof. Then being pregnant and carrying all of his equipment by myself and lifting him...I am sure I will be a little stressed. Nate is suppose to be trying to get off early so he can make it to the appt. Right now I guess the police dept. is short on manpower. I am still praying that he will make it though.
Tomorrow he will be going to the special care clinic and then they will be doing a behavioral study. I will let everyone know how things turn out. I have been trying to update Kaden's pictures. I hope you all enjoy!!! Please pray for us to have a safe trip tomorrow : ). Good night.

Happy Anniversary!!!!

Nate and I celebrated our first anniversary on Sunday. It's amazing how time flies. We have been together for quite sometime now, but have gone through somethings other couples never have to face. As Nate has told me before, if we can get through this (meaning Kaden's complications at birth plus his long stay at CMH) we will get through anything. Well, we took out the year old frozen wedding cake and let it thaw. Believe it or not...it was still really good. We didn't do the whole smash the cake in the face at the wedding (good boy Nate) however, I took it upon myself to go ahead and do it Sunday. Unfortunately, in return I got a nose filled with cake. Oh well, it was fun. On Friday, we went out to dinner and a movie. It might not sound like much, but we do not get a chance to hang out with just the two of us very often. We had a blast!!! Kaden got to stay at grandma's and grandpa's house. I am sure he had fun, he had a sleepover with his cousin Miles. Kaden is not going to school at all this week. Monday was a holiday and I guess the school decided to put some new flooring in and work on the sewer or something, so come Tuesday the school was not ready to open. Today I received a call from Kaden's teacher saying that the nurse felt as though Kaden shouldn't come to school until next week because of all the dust and things in the school right now. I agree and I am so glad that she thought of something so small. He will miss it, but when he goes back next week he will be the "Star of the week." I talked to Kaden's doctor at CMH about Ava. She said that things didn't sound good. She is going to try and make an appt for us with the genetic doctors there since they know some about Kaden's past and have his records to go by. I am very anxious to find out more. It is so nerve racking. Lately Nate and I have been discussing what we will do if it is said that we can't have anymore babies. Adoption comes up a lot. We talk about all of the possibilites though and how we think we might feel about each of them. It is so weird how different your life can turn out than what you planned. Growing up all I imagined for myself was to get married, have two or three children and live care free. You never think of hospital stays, feeding tubes, and home nursing. I am so thankful for Kaden and all that he has taught me. There is a saying that I love and it goes...."While you try to teach your children all about life, your children teach you what life is all about." (author unknown) He has given me an opportunity to experience unconditional love and to live a life that I would never think I could handle. He has shown me my strength and given me even more. He is an absolute blessing and (as said before) I am truly thankful God put His trust into Nate and I and let us take care of one of His miracles. I absolutely adore Kaden and could not imagine my life anymore blessed....and then comes Ava!!!!

Kaden and girl troubles

When I picked up Kaden today from school, I was informed by one of the paras that Kaden had girls fighting over him. There is a girl that has been attending since the begining with Kaden and now there is a new girl. Well, the girl that has been there with Kaden from the get go has been his little buddy, she does everything with him...not so much anymore!!! A new girl is in town!!! The new little girl started doing the type of the things the other little girl has done with Kaden a little quicker than the other little one can get to him and I guess today that hurt her feelings and she stuck out her lip, crossed her arms and went off to pout. Poor baby. I guess Kaden doesn't think anything of it. The new little one was holding his hand while the para and nurse were trying to get him to walk, he tried and tried to shake her loose. I think school has been so good for him socially. He doesn't get very many opportunities to be around that many children his age. I was a little nervous sending him to school, but I am glad Nate and I made the decision to let him go and I am glad he has the chance to go.

As for Ava, well she's moving so much (actually at this moment I think she's dancing or something). It was kind of funny because when they were doing the sonogram she wouldn't hold still AT ALL. I can't believe how much she is moving. That is my favorite part of being pregnant. Nate still really hasn't had a chance to feel her move. I don't know why, but when he puts his hand on my stomach she stops (Kaden use to do the same thing until we got closer to the end of the pregnancy). I continue to pray that she will do well, and that we will figure things out easily. Thank you again for all your thoughts and prayers.

A Better Day

Last night I continued my search on hypoplastic left heart syndrome and after reading more about it, it seem to put my mind more at ease. I had a more calm feeling about the ordeal and had a change of thought about how things will turn out. I want to try to look at this in a more positive light. I know that it is going to tough, and I am sure that my thoughts will take another turn at some point, but for now I will try to stay in a good state of mind. We haven't even talked to the pediatric cardiologist or genectics physicians, so who knows exactly what to expect. I do want to thank all of you for your encouraging words and prayers. It really means a lot.

As for Kaden, well he is having a pretty good day. I am not feeling so good, so I am not as fun to play with and daddy is working over time today. Kaden is pretty good at keeping himself entertained, but he definately knows how to get my attenion when he gets bored. We have been working hard at getting him to walk. He is doing extremely well. At school he has to walk around quite a bit...so I think that helps. He requires less and less support each day. He is even getting to a point where he can stand on his own for a moment. He gets a little scared and reaches out which causes him to lose his balance, but he'll get there. Today was kind of funny for me...Kaden has one of those magnetic writing boards and he enjoys having us write words on it. Well, today we went through colors, animals, and he started doing body parts. He points to a body part that he wants us to spell. He started running out of body parts and thought for a moment and then grabbed his armpit. I started laughing and wrote it for him. Well the next thing he grabbed for had me rolling on the floor. He has never been one of those "adventerous" little boys who grabs himself while getting his diaper changed, so it was a total shock when that is exactly what he did. I tried asking him if he wanted me to write diaper, nope that wasn't it. So me being one of those mom's who give it a kiddy name wrote out "pee pee." I was kind of at a loss of words at the time. He accepted it though!!! Well, daddy just called and we are headed to Wal-Mart when he gets home, so I better get Kaden's things together. I figured out my camera, so I will try to post pictures later.

Here's the deal...

I received a lot of phone calls from friends and family yesterday, wanting to know what was going on with Ava. I will try to explain it as best as I can, however, I am not a doctor so hopefully it's pretty accurate. Well, as you may have read in the previous post Ava has been diagnosed with several things, the main thing being hypoplastic left heart syndrome. After reading about it on the internet I have learned that this basically means that there are several abnormalities in the heart and main blood vessels. This happens during pregnancy within the first 8 weeks of development. One of the most dangerous defect of this is that the left ventricle is very underdeveloped. In a healthy heart the left ventricle is normally very strong and muscular so it is able to pump the blood to the body. Being underdeveloped, the body will not be provided enough blood flow. Treatment for this syndrome is either numerous surgeries beginning right after birth up to 18 months or later, the second option being a heart transplant. After reading about things the baby will endure after birth, it takes me back to Kaden's birth and hospital stay. The articles described babies being on the ventilator, numerous IV's, arterial lines, chest tubes, just things that a baby shouldn't have to put through.

That is just one of the many abnormalities the doctor diagnoised Ava with. Another being a complex heart anomaly, suggestive of large Atrioventricular Sepect Defect. This basically means that the heart did not divide into the four chambers a healthy heart has. The doctor also stated that he did not see an aortic arch. What I have found about the aortic arch missing is that there is no way for the body to receive red blood leaving the heart. As you may guess, this is very dangerous. Ava's palates to her skull are not develping right or in other words not fusing together right. Her head is mearsuring bigger and more round than a normal baby at this stage.

I don't understand why this would happen again. I have tried to think of all the reasons and I just can't seem to make sense of it. Don't get me wrong, I would never trade Kaden for another baby, and I am thankful God trusted us enough to put him into our lives. I know and have heard numerous times that God does not give you more than you can handle, which means Nate and I must be stronger than we really think we are. After reading about all the different findings with Ava, I think she is definately going to have to be a miracle baby. I try to have good thoughts, but it is hard. I think she is going to be a really, really sick baby, and after watching Kaden go through all that he has been through and knowing how sick he was (which I think she will be a little more than that), it just doesn't leave you with too much hope. I know that Kaden is a miracle and that miracles happen, that and God is all you can really hold on to.

Another thing that really has been bothering me is what to do when she is born...meaning with her and with Kaden. I have never been away from Kaden for more than a day, but I can't imagine leaving Ava at the hospital on her own. Being that she will be born during cold and flu season and RSV season, it would not be safe to bring Kaden up to KC and risk him getting ill. What do I do? And what if she is in the hospital for a long period of time. I am working full time now, I would quit except that now, unlike before with Kaden, we have more responsibilities. We purchased a lot in hopes of building a house...I have a feeling that is not going to go so well. I know that we will figure it out, but thinking about it all now is very overwhelming. The thing that gets to me the worst is the seperation. I know that I could go down there for a day and then back home for a day...but financially that doesn't seem too realistic. Maybe we should just move to KC : ). That would be the easiest, but Nate might end up in the hospital with high blood pressure issues from all the horrible traffic : ). I know I am rambling , and I know that it will be hard, but we will come up with a solution. Please continue to pray for Ava. Thank you all for all your thoughts and prayers.

It's a Girl!!!, but we need your prayers

Yesterday we found out that Kaden is going to be a big brother to a little sister. However, we also found out some not so good news and had to see a specialist today in Topeka. We were told that she has hypoplastic left heart syndrome, her palates are not forming right in her skull, she is missing a vessel cord in her umbilical cord (which doesn't seem to be that big of a problem right now), she has bilateral pleural effusions, they did not see an aortic arch, and she has a complex heart anomaly suggestive of large AVSD. You might be wondering what all this might mean...well, we aren't too sure right now either. The doctor did talk to us, but when you are in shock, it's hard to follow along. We are going to look all of this up and put it into more understandable language later. We have decided to talk to the genetic physicians to see if it is something related to us, with having Kaden and all.

What they did tell us is that she will have a 50/50 chance for survival in the womb, and that mortality is high after birth. She will have to go through several operations. We plan on going to Children's Mercy again. I don't know how it will work out for us though, now that we have Kaden. When it was just Kaden, I was able to stay up there with him 24/7, well now Kaden will be home and I will want to be with him, but at the same time be at the hospital with her. It will be hard but I am sure we will come up with something. Living two hours away, there is no way driving back and forth will work. I jsut can not believe this is happening again. It gets very frustrating and all you can think is what the first baby went through and hope that it will be easier. The way the doctor talked, I don't think it will be. I hope she is as strong as her brother. God has his plan and we can only go by it. One good thing is that we have already gone through this so it is not new territory. We know the nurses in the NICU and feel relieved knowing that they will be taking care of her.

So.....in case any of you were wondering we are naming her....Ava Rae. Please pray for Ava. Thank you so much and I will be more specific in the next blog, I have to get over this feeling of disbelief first.

Our Day In Kansas City

Today Nate, Kaden and I made a trip to KC to speak at a conference about premature and medically challenged infants and toddlers. I believe every year they invite a family to speak and this year it happened to be us. Kaden was definately the center of attention (not that it was anything new for him). He enjoyed getting the crowd to laugh, he even showed everyone how to dance, I must add he is a FABULOUS dancer. He is not a big fan of an audience clapping, he even cried when he heard it right before we went on...however after the dance he started clapping leading to the audience clapping and he just ate it up. I wish I brought my video camera. He was such a little ham. On the way home Nate and I went over some of things we discussed at the conference. Then he started making fun of me...why you might ask. It is because of all these hormones raging inside of me. We were asked what we were hoping for, for Kaden's future. Ok, so I started crying while I was talking about it...it's allowed, I am a mom!!! When we got back into town we took a trip to Wal-Mart, Kaden was showing us everything he wanted...and I mean everything. I had to let him know that Santa would be here soon and that he needed to talk to him. He did make it out of there with some new bath toys though.

Kaden has learned a new word to spell on his leap frog magnet toy. "Boo." What perfect timing. The other day he put the three letters into their slot and it replied back to him as "boo." All of a sudden I hear him trying to get my attention and when I look over he began pointing at the word and then covered his eyes as if playing peek-a-boo. I am telling you, this boy will find a way to let you know what he is thinking. Nate and I definately love to brag about what a genious we have. Well, anyway...he is showing everyone that he comes in contact with the new word he has learned. Maybe he will teach the new baby somethings.

I know that I have promised this in the past...but one day I will find a way to post pictures again. I have been so busy lately with everything I am finding it hard to keep up with things. One day.....

Please continue your prayers

This post is actually about little Gabi. I have just found it in me to write this to all of you...but Gabi passed away on Monday morning. She put up one heck of a fight. Gabi reminded me so much of Kaden when he was in the hospital. She has left footprints on my heart. Saturday her family is celebrating her heroic life. Please be with them in spirit, and continue to send prayers their way. Rest in peace Gabi...sweet dreams angel. Love The Boeckman Family

Jason and Micah,
Please let us know if there is anything that we can do for you. Our hearts are open to you all.

School Days

Today was Kaden's first day of school. He did wonderful, mommy was a different story. I thought that it would be alright, but once I started to tell him good-bye the tears started flowing. My baby is growing up. His nurse, Cristen, is able to go with him, so I think that helps him a lot. She said he did great and seemed to open up to one of the paras' there. He is one of the helpers, how I understand it he is in charge of shapes. So, he points to a shape and the class says what shape he is pointing to. When I went to pick him up, class was still going on...so I stood outside the classroom and watched him sit in a circle with the rest of the class and sing "The Wheels on the Bus," (I admit, that almost got the tears flowing again). He goes to school four days a week, Mon-Thurs. for three hours, so it's not too bad. He was excited to tell nana what he did today. When he saw her he signed school and numbers. If you didn't know already he loves numbers, colors, and letters! What a big boy...I can't believe this day is already here. Boy was he wiped out tonight, he started asking to go to sleep by 6:30, I made him wait until 8:00, I don't need him up and ready by 4:00 : ). Like the last couple postings I have pics to post, however I am trying to get the camera to work with this computer again...I am not sure what is going on. Hopefully soon.

Our Day at the Lake

Kaden is doing well. He went out to the lake with us for my dad's company picnic yesterday. Lucky for him it was cloudy and breezy most of the day. I think he really enjoyed it. We took him on a boat ride. He didn't do so bad. After awhile I think he began to get fed up with the life jacket. Unfortunately I didn't have a camera to take pics. He got his first sun burn. It's a little pink and across his nose and cheeks. It's not bad at all, but it gave him a little color : ) .

Well, I really wanted to leave a note up here to ask you all to pray hard for Gabi. I just viewed her blog and the doc's aren't sure if she will make it through the night. She had the surgery for the trach on Friday and she just isn't doing very well today. She is holding too much fluid in her body and it's making it hard for her to breath. To me, it is almost what Kaden went through the last time we almost lost him. It breaks my heart and leaves me in tears knowing that this wonderful family we met with such a special little girl is going through something so terrible. So, please pray extra hard for her. Thank you so much, it will mean a lot. Take care...

Go Kaden Go

So Kaden is loving his new truck. He's figured out how to hold on to the gas pedal instead of stopping then going just to stop again. Two days ago daddy had the bright idea to have Kaden drive to grandpa and grandma's house. Kaden did pretty well, mommy had to bend over and steer the truck the whole time b/c daddy decided to ride his bike!!! Kaden only ran over my feet twice, so it wasn't too bad, saying I was wearing flip flops : ) . But boy was he determined to get to grandpa's, it was all pretty cute. Yesterday he took one of his toys for a ride around the block. He is doing really well, I just can't wait for him to learn how to steer!!!
On another note, the family I mentioned earlier still really needs everyone's prayers. Things are not really going their way. If you haven't checked out their blog you really should...just so you know exactly what I am talking about.

Sorry I haven't posted any updated pictures, hopefully I will be able to this weekend...so be on the look out!!!!

Kaden'sBirthday Bash

Today we celebrated Kaden's 3rd birthday!!! This years theme was Elmo. I think he enjoyed it. He actually tried opening his presents, with a little assistance from daddy. My parents, sister, grandma, Nate's parents and the two of us went in together and got him a F-150 battery operated truck. He loved it. He got in it and started waving bye-bye and blowing kisses to everyone and then took off. It was the cutest thing. I was worried that he wasn't going to figure out how to work it...but boy was I wrong. He was worn out by the end of it all, and so was I. He tried busting the pinata and played pin the tail on the donkey (although he cheated and took the blind fold off!!!). I was excited that he played such a big part in this birthday, much different then the last two. I guess that's what comes with getting older. I will be posting pictures hopefully in the next day or two.

P.S. We met a family at CMH, when Kaden had his tonsils removed who has a blog of their own. Their little girl, Gabi, (7 months old today) is unexpectedly still in the hospital and having many complications. They could certainly use your prayers. You can check out her blog...it is gabrielesheridan.blogspot.com
I know that some of you already know about her, but please continue to pray for her and her family. Thank you.

Since then...Aug.2007

Kaden is a few days from being three and a long way from where he once was. Kaden still requires the ventilator support and a feeding tube to receive nutrition but boy has he made a drastic improvement since 2005. Kaden has had a few more surgeries to repair the diaphragmatic hernia that just did not want to stay intact. Since his last surgery for the repair ( in Dec) Kaden's diaphragm hasn't been an issue (knock on wood). He had a surgery at the end of June to remove his tonsils and atnoids and the doctors decided to use a little camera to look at his airway. What they found was a little disappointing. The doctor came to us and let us know that she believed that Kaden's vocal cords were paralyzed. For those who may not know, this means that since they are paralyzed closed he can make noise but he can not get air past them to breath, they need to be opened to breath. She believes as of now that he will need the trach for life. It is up to him and his diaphragm to come off of the ventilator. This little boy is absolutely amazing and has proven so many people wrong, I would not be surprised if he does it again!!!

Kaden will be starting pre-school in a little over a week. We, as parents, are so excited for him but have many, many butterflies in our stomach. Our little angel is growing up. He is so smart, and I am not just saying this because he is my son, but this little guy can spell over ten words, including his name, knows his colors and numbers. He knows about 75-100 signs. Let me remind you that he is just turning three in a few days. Like I said he is absolutely amazing. He has taught my husband and I a new meaning for life. We feel absolutely blessed to be the parents of such a fun loving, incredible little boy. He is the love of our lives and a joy to be around.

Written in Oct. 2005

Kaden Thomas Boeckman was born August 14, 2004 at 4:45 in the morning weighing 9lbs and 13oz. From the outside he was perfect, while the inside was anything but. Kaden was born with a diaphragmatic hernia.

A diaphragmatic hernia is a hole in the diaphragm. Sounds simple, but children with these hernias have only a 50/50 chance for survival. In Kaden's circumstance the left side of his diaphragm did not develop completely leaving a hole in which his stomach, intestines, and a part of his spleen went through, crowding his chest cavity. His heart was pushed over to the central/right side of his body, his right lung was partially developed, and his left lung was hardly developed at all. Even in the best of scenarios, children with these hernias are extremely ill and require intensive support. Unfortunately, Kaden's course has been much more difficult than most.

Kaden started life at the KU Medical Center, where I was flown from Manhattan by helicopter to give birth. At birth he was put on a breathing machine (a ventilator). By the end of his first week of life, struggling to survive, Kaden became deathly ill. The doctors told us that he had less than a 20% chance of making it. They decided the best thing to do was to transfer him to Children's Mercy Hospital (CMH).

At CMH the doctors decided that the best chance for Kaden's survival was for him to be put on ECMO (extracorporeal membrane oxygenation circuit). This procedure included entering tubing into the two main arteries of Kaden's neck. This tubing carried Kaden's blood through a machine adding oxygen to his blood while removing the carbon dioxide from it, assisting his failing lungs. It was not a guarantee for Kaden's recovery, but without it he would have died.
After eight days on ECMO, Kaden made a much needed improvement. He was well enough to be taken off of this life support, although he would still required the support of the ventilator to keep him alive. However, once Kaden came off of ECMO he became severely ill with an infection to his blood. The surgeons were able to do the surgery to repair his diaphragm after about two weeks of ups and downs and lots of praying. Kaden was not as stable as the doctors would hope, but it was a must for Kaden to have this surgery, it was a now or never situation.

Kaden had been living with nutrients and lipids. About one week after his surgery, the doctors decided that it was time for Kaden to start feeding. They put a tube through his nose that went down to his stomach, and this is how he was fed. As if this poor little guy hadn't gone through enough, now he couldn't tolerate his feedings. After extensive searching, the doctors found a problem with his stomach, it was twisted. Three weeks after the last surgery, Kaden was under the knife again, this time to fix the problem with his stomach.

When Kaden seemed to have recovered , and was tolerating his feedings we began the use of a bottle. Kaden had other plans. After everything this sweet baby had been through he developed a severe oral aversion. He lost the natural ability to eat and swallow.

December 1st came yet another surgery. This included a feeding tube that was inserted into Kaden's abdomen as well as a fundoplication which means tying off a valve to keep the acid in Kaden's stomach from refluxing. Learning how to care for the feeding tube was very intimidating for us as parents at first. Little did we know what was yet to come.

A couple of days after Christmas we were told we would get to go home with Kaden. After staying at the Ronald McDonald House for four months we were ecstatic to go home and finally be a family. After two nights in the parent room with Kaden at the hospital, he became extremely sick, running an outrages temperature of 105.7F. Back into the NICU he went. Awhile after being back on the floor, Kaden began to have seizures from having such a high temperature. He also was having problems keeping his oxygen and carbon dioxide levels in a safe range. After doing blood work, an infection was found yet again in Kaden's blood. This infection stemmed from a central line Kaden had which was pulled the first day we were able to stay in the parent room with him.

Kaden was having other problems as well. The doctors couldn't put a finger on what was going on with our sweetie. Before being put on the ventilator and then after being taken off, Kaden was having issues breathing when he would get upset. Even so, we were back in the parent room with Kaden at the end of January, but again Kaden ended up back in the NICU.

As time went on Kaden had a harder time breathing and it just kept getting worse. The doctors finally got the family together and told us that without a tracheostomy Kaden would not survive. Although, they didn't know with the condition Kaden was in how well it would help. It is the most difficult decision as parents to make...choosing a life for your child of uncertainty or death. We have seen the fight in our little one's eyes, the drive and the determination to survive, and we felt like we had to give him every opportunity in the world. It is hard to give up on something or someone you love so much and that you believe in with all of your heart.
After the trach, Kaden was back to his happy, smiling self. He was doing wonderful. Suddenly, Kaden stared behaving in ways that weren't normal for him. After a chest x-ray, the doctors told us the news, Kaden's patch that repaired his diaphragm had popped, as well as the fundoplication. A little after a week of having surgery for the trach, Kaden was now going into surgery to repair the patch.

Kaden began to have the difficulties that he showed previously with having trouble breathing, although he was assisted with a ventilator that was attached to his trach. Time went on, each day as slow as the first. I was there with Kaden every day, staying at the Ronald McDonald House (which I adopted as my new home, and I think it adopted me as well). Kaden's dad came up on his days off, because unfortunately he had to continue to work. After being there for ten months the nurses and staff at CMH were determined for us to take some time and go out as a couple. A social worker had gotten us tickets for a Royals baseball game, and although we were hesitant to leave...we decided to go. However, I called about a hour and a half after we left. Kaden's report was alright, he had been fussy, but ended up going to sleep. I will never forget what happened next. I called again, about a hour after the first call. A frantic nurse answered the call telling me that we needed to get to the hospital as fast as possible. I have never been in a moment that passed so slow. She informed me that they had to do chest compressions on Kaden, that he wasn't able to get air to his lungs although he was on the ventilator and he wasn't maintaining his heart rate. When we got to his bed side our world turned upside down. The nurses working in the same area of the NICU that Kaden's bed spot was in, were in tears. Kaden's dad picked him up and he was limp. We thought he was gone. The doctors took a blood gas and his carbon dioxide levels were as high as they had ever been. They told us that they do not know anyone who has survived with such a high level and it didn't seem that Kaden would either. We did all we knew what to do at the time. We held him, kissed him, and told him just how much we loved him. We told him how proud we were of him and how lucky we were to have a chance to love somebody so special and have him in our lives. He had passed everyone's expectations. We called our family's and my dad decided he was coming up to Kansas City.
The fight came out in Kaden yet again. As I was holding him, crying and trying to give him all the love that somebody deserves in a lifetime, he opened his eyes and looked up at me and then at his dad. He just stared at us for a moment in a daze, not sure what was going on. What happened next was a miracle and shows the will of this little one, he smiled at us and then in a minute he was ready to play. My dad got to the hospital (in record time, may I add), not knowing what to expect. Much to his surprise Kaden was sitting in my lap playing, smiling, not knowing the grief everyone had just went through.

The doctors had decided the next thing to do would be to put a scope down Kaden's throat to see how his bronchial tubes functioned. They found the problem he had been living with the past eight months. Kaden has a condition in which his bronchial tubes have spasms and he can not get air to his lungs. Knowing the problem helps us know now what to do to help Kaden in a situation in which those tubes do collapse. So then it was decided that it would be in Kaden's best interest to be at home. The doctors didn't give us much hope, telling us that he would be the sickest baby that they have ever sent home. They didn't believe he would have a long life and that we would probably be in the hospital more than we would be at home.
Well, a week after we were home, Kaden was headed back to the hospital. For 11 days we were back to how our lives were for the last 11 months, fortunately we were back home before we knew it.

We were able to celebrate Kaden's first birthday at home with family. Even a few nurses from the NICU came down to help us celebrate. Kaden is doing extraordinarily well at home. He has physical therapy a couple times a month, but he definitely is not the biggest fan of it. We have trips to CMH about once a month, in which everyone there is so amazed and impressed with how well Kaden is doing. He is still a very sick baby, but looking at him one would see how happy and outgoing he really is.

Kaden has home health nurses that come into our home, averaging about 106 hours a week. As parents though, we feel that we should be the ones taking care of our baby, and of course, Kaden is more comfortable with us taking care of him. The nurses do make it easier for us to get out of the house if we need to, and they are there to provide an extra hand if needed. It has taken a lot of getting use to though, having somebody we don't know in our home.

"To call Kaden a miracle would be an understatement," as one surgeon stated. He has endured much more than any average person would have to in a lifetime but keeps on fighting all the while with a smile on his face. This was the largest and most terrifying roller coaster of our lives, but at the end of it all we would do it again to help this little angel feel as special and important to our lives as he really is.

We want to thank those who have given us support and who have kept Kaden in their prayers, your generosity will be in our hearts forever. God Bless.