We had a great Christmas and New Year

So what is the meaning of Christmas...not the amount of present under the tree and how much money you spent...it is that your family and loved ones are around you. We were blessed to spend our second year in row AT HOME as a family for Christmas and New Year's. What a great day. Caleb didn't open his gifts as he wasn't sure about it but he was very intent when I or Brian unwrapped his presents. Thank you to all the Santas that sent Caleb gifts too. You all are too too kind, thank you so much! I have included some pics of a snowstorm that came a couple days before Christmas, Caleb opening his gifts, and Caleb looking/playing with the Steeler tree we got from my parents.

Make an on-line slide show at www.OneTrueMedia.com

Unfortunately, a couple days after Christmas Caleb got very congested and we were not concerned as long as it didn't seem to bother him or get any worse. I, about two days after Caleb started getting congested, ran a fever and got very congested also. Well, this morning he woke up coughing or should I say barking like a dog or a seal. I walked into his room and he was sitting up in bed crying and coughing and trying to catch his breathe. Brian and I noticed his congestion had started moving lastnight and we were worried that maybe his congestion had moved to his chest. Our pediatrician is out of the office for the holiday so we decided to take him to MedExpress as we love all the docs there. They were great. We were so excited when we walked in and saw Dr. Burkland! He is not only an awesome doctor but a family friend! He said that both Caleb's and my symptoms are due to a nasty bug circulating around that is very similar to the flu. He listened to Caleb's lungs and said they sounded clear! Thank goodness. So they gave his a strong steroid via his g-tube that will hopefully help him with his cough and will help him get rid of his cold. I will post soon with updates on his cold.


Also, on a side note, some anonymous person is leaving unwanted comments on this blog. I now will get notifications when someone leaves a comment then if it is not that person I will post. So please don't be alarmed if you don't see your comment right away and PLEASE continue to leave you comments.

Thanks for checking in!!

God Bless you all!!

God Bless Caleb!!

Cookie Day

First thanks again for the suggestions on the crafts that I can do with Caleb! I got a lot of great ideas! Already started an alphabet word line. I will take pictures of it when I get it hung up and as we work with it!

Well it was a big day here yesterday. What a great day. I started the day by getting my hair done, much needed. Thanks Alana-it looks great, love ya tons! Then I went to the store to get some groceries. This was the first time that we did not wipe down the groceries, very weird as wiping them down with viral wipes has been the norm. So hard to break the habit even though you want to so much. It will take some getting used to. You become somewhat warped. You even think when you get the item out of the cupboard that 'oh this is one of those items we didn't wipe down this time', 'should I wash my hands'...you become very obsessive compulsive regarding cleanliness. We are adjusting...it will take time. I can't imagine how hard it will be when we stop some of the other restrictions that we are doing...baby steps...

Next was cookie making time. Brian was off so this worked out perfect. We did sugar cookies and peanut butter kisses and Caleb really like watching us decorate the cookies, he really liked to undecorate them. Another first! We had a blast.

God Bless you all!!

God Bless Caleb!!

Thanks for the ideas

I did receive some great ideas on some approaches and items to try to get Caleb to drink. Thank you everyone so much! HE LOVES TO EAT now so if we can only do that for drinking and get that feeding tube out I would be ecstatic. I can't believe that when he first came home we dealt with his central line, IV, too. WOW! What he has been through. I pray that he can continue to make improvements and keep fighting. I also pray that his immune system continues to improve. I am gonna write his docs at Duke today to just get some feedback. We are still living in complete isolation for his safety, but just want to see if they have any suggestions on anything that we may be able to do with him now and if we can take him anywhere.

Also, if anyone has any craft ideas that I can do here at home with Caleb I would greatly appreciate. You can only play with Playdo and coloring books for so long. So any suggestions for crafts would be great. I think he and I will make cookies tomorrow while his daddy is off. OH and also I am going to get my hair done tomorrow! WOHHOO so exciting, I haven't had it done in about five months so it could use some work.

Well, I gotta go, I will post pics of some cookie making tomorrow!

Thanks for stopping by!

God Bless you all!!

God Bless Caleb!!

Advice and Suggestions Much Needed!

So as many as you know, Caleb has an oral aversion due to what he has been through. We have in the past year been able to finally get him to eat, however, we cannot get him to drink. I am asking for any advice from others on what worked for your child on getting then to drink (i.e. sippy cups, straws, types of juice, therapy, etc) Please help! We want to get this feeding tube out of Caleb and get him drinking on his own!

Thanks in advance!

God Bless you all!

God Bless Caleb!!

Second H1N1 shot but no second round immunizations

So I took Caleb to go get his second H1N1 shot yesterday. The doctor wanted us to wait another month for his second round of immunizations though. He did great, he is now figuring out that every time I take him there he gets a shot, so he got pretty upset as soon as I took him back, poor guy. But he is also smart enough to know that as soon as I pull his rain cover 'germ shield' down he is safe from anyone touching him and calms down immediately. He is too cute. What a smart boy! It was freezing cold, windchill was below zero when we went, yikes. Of course, I got the typical comments/stares on the elevator when we were in there regarding him being under the shield. One gentleman stared and said, 'well that's interesting' I said 'yea, he was born without the part of the body that makes your immune system so that is how we protect him from germs' he then said 'wow, what are the odds'...I then said 'well he actually has two very rare syndromes, that makes him the sixth case in the world'. He then said 'wow you all should play the lottery.' uh...Yeah...ok

Anyway, Caleb is becoming quite the mimicker lately. He is trying to say words that we say. So that is fun. We especially like that we know that he now recognizes who 'ho ho' is, Santa. I am not sure he totally gets what Santa does, but one step at a time right?!?

Also, I am excited that we will soon be able to see our families again. My mom and dad are planning to come this weekend and the countdown is on for the rest of the family of when it will be safe for them to come and visit. We are so very excited!

I am still frustrated with the isolation precautions. I know it is what we have to do to protect Caleb, but all of us would like to do things outside of this house. I also know that most importantly Caleb would benefit and prosper so much if we could get him out of this house and do different activities. Again I know in time these things will happen. But quite frankly the phrase 'in time' is not specific enough for me anymore.

God Bless you all!!

God Bless Caleb!!

An outing leads to some frustration..

So we HAD to get out of the house lastnight. We all are suffering from SEVERE cabin fever. So we hopped in the car and went to cruise through the festival of lights (for those of you not from the area-a local resort has Christmas light displays throughout the park that you drive through and look at) Well...Caleb was shocked when we went outside but got excited when we got in the vroom vroom, his way of saying car. {I am happy he was excited to see the car, as usually the only time we go out is to take him to the doctor.} So off we went the three of us. Well, halfway throughout the lights we spent most of the time talking VERY loud to Caleb as he was trying to go to sleep! It was so so nice to get out of the house. So nice! It is a little bit of tease to go out though as we don't go out.
Well speaking of going out, Caleb will be heading to the doctor on Thursday morning to get his second round of childhood vaccines and to get his second H1N1 shot! I am so happy to hear that the H1N1 virus, for now, seems to be not as widespread. Hopefully it can stay that way. I know the seasonal flu is soon to start spreading, but Caleb has gotten the seasonal flu shot so I am a little less freaked out about that one.
So I have to start to wonder, when can we start leading a normal life? I wonder if anyone will ever give us the 'go-ahead' When can we go to to a department store with Caleb?, when can Caleb go see Santa?, when can we go get professional pictures taken of Caleb?, when can we take Caleb to the grocery store?, when can we stop wiping down all of groceries?, when do we not need to take showers every time we leave the house and come back in?, when do we stop having to worry about the mail as 'dirty'?, when can Caleb go to some therapy groups? When can we have normalcy? I know I don't usually show my frustrations on here, but it has been over three years now and wow three years...Yes I know it is better than living in a hospital room, but when can we start doing some normal things? I have tried not to be somewhat jealous of when others can do things but it is tough. I see pictures of other friends' kids with Santa or getting their professional Christmas portraits taken and it is hard. I would love to take Caleb to a movie or to a parade or to a local Christmas show, but we can't....When can we? I just know that Caleb is missing out on some awesome experiences...I know in time...but when?

Since Caleb can't go see Santa I brought Santa to him...for those of you who have kids try this out. Check out Caleb's video http://portablenorthpole.tv/watch/391301f6b0b943ca023324bf2593dea8. If you want to make a video for you child go http://portablenorthpole.tv/home

Sorry just would like to start having some normalcy...

God Bless you all!!

God Bless Caleb!!

Vaccinations, Train, Ornaments

Well, thanks to a good friend, Nicole, our families have been given the opportunity to get the H1N1 vaccine so they can come to the home and visit. They couldn't come until they were vaccinated as it was not safe for Caleb. Well the last couple family members were vaccinated yesterday, so the countdown begins as to when they can come visit. NINE days and counting. We are so excited to see our family again. We have been in seclusion, and I must admit it is Cabin Fever times a million. We are so excited to see you all! We miss you so so much!

Bri got a hold of his old train from when he was little and we weren't sure how Caleb would take to it, but he did! It was so cute! The boys set up the train and Caleb got used to it pretty quick! He even takes the cars off the track and plays with them, big step sensory-wise as sometimes this warming up step can take a couple days!

Caleb and I made Cinnamon Christmas ornaments yesterday and he didn't really get into it, but he did watch. I don't think he wanted to touch the 'dough' as it was a weird texture. I did try to get him to help me roll the rolling pin and he wasn't having that either. At least it was something different for him to do/see. I have got to get my hands on more craft-like things like that for us to do!

God Bless you all!!

God Bless Caleb!!

Thanksgiving

Well it isn't hard to figure out what we were thankful for this Thanksgiving! We are so thankful that we spent this Thanksgiving together under one roof, in the same state, in our home, together. What a simple but enjoyable day. To top it off. . . we cut the turkey very very small for Caleb and he ate turkey as well as everything else that we ate! He ate as much as me! It was so awesome to see. Thank you Lord for allowing us to have such a wonderful day together.
Unfortunately, we were unable to spend the day with my parents, Brian's parents, our grandmas, or my brothers and their families until they are immunized to H1N1 or Caleb is completely immunized, whichever comes first, before they can visit. We miss you all and love you very much.
Happy Thanksgiving to all of you. Please keep all of those in your prayers that are spending this Thanksgiving holiday like Brian, Caleb, and I did in a hospital praying for their loved one's recovery. Also, God Bless all those who are serving our country and who are away from their families this holiday.

God Bless you all!!

God Bless Caleb!!

I'm Alive and Well

So many of you know that Brian and I are HUGE Kenny Chesney fans. So when I heard his new song, I'm Alive (playing in the background), with one of our other favorite artists, Dave Mathews, I was in awe. It reminded me of everything Caleb, Brian, and I have been through. It feels like it is our theme song. I tear up every time I hear it, remembering all that we have been through. Never take a breathe for granted....

Here are the lyrics:
I'm Alive lyrics

Kenny Chesney, Feat - Dave Matthews

So damn easy to say that life's so hard
Everybody's got their share of battle scars
As for me I'd like to thank my lucky stars that
I'm alive and well

It'd be easy to add up all the pain
And all the dreams you've sat and watch go up in flames
Dwell on the wreckage as it smolders in the rain
But not me... I'm alive

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
And I'm alive and well
I'm alive and well

Stars are dancin' on the water here tonight
It's good for the soul when there's not a soul in sight
This motor's caught its wind and brought me back to life
Now I'm alive and well

And today you know that's good enough for me
Breathing in and out's a blessing can't you see
Today's the first day of the rest of my life
Now I'm alive and well
Yeah I'm alive and well





God Bless you all!!

God Bless Caleb!!

Shot 1

So I took Caleb to go get his first of two shots for the H1N1 vaccine.

Taking him by myself, without Brian, is very stressful to go alone as I have to keep myself 'clean' so I can interact with and touch Caleb when needed. Therefore, I carried a lot of antibac and viral wipes. He was under his rain cover, to protect him from respiratory droplets and to keep him safe. He doesn't tolerate the pediatric masks at all, I wish he would but the rain cover also prevents him from touching stuff too. I used the viral wipes to open doors and touch elevator buttons. Then, I tried not to rub up against anything so I could stay 'clean'. Then when we got home I gave him a bath and I got a shower after I bathed him. An outing is nice, but is very stressful and a lot of planning goes into it. Thanks everyone at Dr. Archbold's office for opening the doors for me and such once we got up there. You all are awesome!

Caleb can get the second shot in twenty eight days. Ten days after the second shot he will have full coverage...so we have to pray we can continue to keep him healthy. Brian and I also got vaccinated and ours was the normal 'one shot' since we are adults. I am praying that Brian and I can also stay healthy for the next ten days (estimated amount of time for your body to build immunity to this virus) as our bodies build immunity to the virus. If we can do that, then we can have even a better chance of keeping Caleb safe from the H1N1 virus. So we are praying hard. Needless to say, Brian and I are VERY VERY stressed right now regarding this virus and protecting Caleb. We thought we were easing somewhat towards normalcy and then this virus came along and turned everything upside down. We have stopped all visitors from coming by until either Caleb is completely vaccinated OR they are vaccinated and well past the time the immunity should kick in to this virus, whichever comes first. We will continue to do all the other precautions (wiping down groceries or anything else that enters the home, shower when coming back into the home after leaving, etc.) we have been doing to protect Caleb throughout this flu season.

Please Lord watch over all three of us and keep us healthy as our bodies immune systems build immunity to this virus so we can protect Caleb!

God Bless you all!!

God Bless Caleb!!