Wednesday, October 31, 2007

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!!!!

Monday, October 29, 2007

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.

Friday, October 26, 2007

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!!!

Friday, October 19, 2007

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.

Wednesday, October 17, 2007

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.

Tuesday, October 16, 2007

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.

Tuesday, October 9, 2007

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 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!!!!

Tuesday, October 2, 2007

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.