Continuing to Sign and a Date Night

Caleb continues to amaze me with how quick he is picking up signing. He signed 'dog' the other day, which is probably one of the hardest signs to date. He really loves signing. He will sit on the floor in front of me and sign a whole bunch of different words and wait for me to say what he is signing. It's our new game. I have thought of a couple ideas of some possible things I could make at home to help him start learning even more cognitively-so I will post pictures soon of that once I get them made.

He also is getting a lot better with crawling, seems a lot more coordinated! AND FAST!

I had posted awhile back that I would post the story done on our local news station. Well the cd I got with the story on it consists of numerous files and not just one file, so a friend of ours Crissy Clutter, is working on getting it put into one file. She is very busy right now, so she let me know today that she hopes to have it for us sometime after Easter. Thanks Crissy!

Brian and I were able to go out for the first night in a VERY LONG time the other night. We had sooooo much fun. It was so nice to have a date night. My mom and dad babysat and did great and had so much fun they encouraged us to go out again soon. Brian and I might take them up on that offer and go out for our anniversary this coming Monday. I had a blast Brian, I love you very much!


I also would like to thank everyone for the prayers for my Mom when she was in the hospital. She is home now, her sugar is stabilizing. Thank you all for your prayers!

God Bless you all!!

God Bless Caleb!!

Walker and Signs

So Caleb got his walker on Wednesday. His physical therapist was unable to come, because his daughter is sick. Due to the isolation precautions Caleb is on, Brian's and my parents, the therapists, or nurses cannot visit if they or any of their family members are sick. So I have been just putting the walker in Caleb's area, like we do for other 'new' items to help him adjust. He still doesn't like it, at all! But I am hoping that will change! I have a feeling he would do really great with it, but I have to get him to accept it first. So we will keep on working on it. The pictures that were taken of him with the walker were just before a crying
meltdown.

Caleb has been doing GREAT with his sign language. He has picked up so many signs that I have shown him in the last two days it is amazing. In the last two days he has picked up: lion, dad, again, and elephant. This is really good progress for him as he used to pick up one or two signs maybe every two weeks. We are really hoping he continues to pick up signs this quick. He also seems to be understanding verbal directions a little better. Lastnight, before bedtime, Brian and I were playing with Caleb and asked him to get the ball across the room. When we ask him things like this we verbalize the direction and sign the key words for him in the direction. He crawled across the room and rolled the ball back to us! It was really neat. Of course, we have hit the terrible two's and that along with the breakdown in communication due to the delays can make things difficult. But I try to teach him signs daily that would incorporate into his daily routine to help him communicate what he wants.

I just wanted to give a quick update as I know many of you were aware that he got his walker and I wanted to let everyone know where we were with that.

Thanks again for checking in on Caleb!

God Bless you all!

God Bless Caleb!!

Alligator

Well, Awhile back I posted that Caleb had a new fascination with Alligators and I mentioned that we were looking for alligators for him. Well thanks again to one of our wonderful friends Caleb received a little friend, an alligator, in the mail. Thanks Lara and Family. He absolutely loves it! Of course, like any other toy, it took some warming up to, but he took to it and loves it! We actually use it during our feeding therapy with Caleb and pretend the alligator is eating too!

God Bless you all!!

God Bless Caleb!!

Haircut

So since we cannot take Caleb out of the home, one of my 'hats' I wear is a stylist So needless to say when Caleb gets a haircut we do it here at home. Usually I trim and then Brian blends it with the razor. But Brian has been working A LOT lately so I cut Caleb's hair the other day on my own. I think this is the best one so far, and the quickest. Here are some before and after pics for you all to see!

Also, there is a little girl, Moriah, that needs prayers along with her parents. Please keep this little girl and her family in your prayers! To read more about this sweet little girl and her family please visit, http://www.momentswithmoriah.blogspot.com/.

Thanks for checking in on all of us!!


God Bless you all!!



God Bless Caleb!!

Big Boy Bed

So....This will be Caleb's third night in his big boy bed. The other night he fell asleep in my lap (so love when he does that) After he fell asleep I thought if I could put him in bed asleep, that may be the easiest time for the transition from his crib to his big boy bed.

Well, it was what he needed to help him accept the new bed, comforter, colors, textures, etc. I am hoping his sensory aversions are conquered in regards to the bed. His sensory aversions can go away and re-appeear, as this does happen frequently with his toys. So we are really hoping and praying that his sensory aversions in regards to his bed don't re-appear. Fingers-crossed!

So, today I took apart his crib. It was a mixture of emotions for me when I was taking the crib apart. I was happy that my little boy is sleeping in a big boy bed. But at the same time, my little boy is in a big boy bed and I know that 'baby' stage is over. We didn't get to enjoy all the time that he should have been in a crib here at home, as he was in the hospital for a year and a half. So that reminded me of some of the things he might have missed by being in the hospital for so long. But the joy DEFINITELY out-weighed the harder memories of things he may have missed. I am so proud of my little boy's accomplishments throughout his life and he continues to make me so proud to be his moma. Way to go Caleb!

God Bless you all!!

God Bless Caleb!!

'C' is for Cat

So a little snip it so I can brag about my amazing son.

Yesterday Caleb was in the tub and we were playing with his letters, that we got thanks to our friends at Xerox, that you can stick to the side of the tub. Well he put the letter C up on the side of the tub and said 'meow' and signed 'cat'. I was so shocked and happy. I am reminded of Caleb's delays by the therapists notes on their evaluation sheets when they visit, but it is times like these that you know that yes even though he is delayed he is defenitely very smart and wants to communicate and learn. Way to go Caleb!!

God Bless you all!!

God Bless Caleb!!

Big Boy Bed and a Pediatric Walker?

Well, we thought we would try to set Caleb up with a big boy bed as we found a great deal on a box spring and mattress for his room and couldn't pass it up.

Well we set up the bed, and well as for now it is a 'no go'. We realized that due to his delays Caleb doesn't understand that he could fall out of bed. So we are looking into get another high side rail and putting a rail on both sides and the end of the bed. Thanks Jodi for the bed rail, it works! We just need to get one more and then we will try again and see if it is safe. Another downfall of the big boy bed situation is that we decided to get Caleb's favorite thing, Sponge Bob, as the comforter hoping to make it a 'smoother' transition. Well, he is scared of it. He wont lay down on it or really touch it, as you can see from the video. Not sure if it his sensory issues, regular fear,or a combo of the two so I am trying to get him more comfortable with the comforter too. So for now we have his crib and his big boy bed in his room until we can transition him to his big boy bed permanently.

Caleb's Physical Therapist came Thursday and we discussed the fact that Caleb is still not walking. Let me remind everyone, that Caleb didn't sit up on his own until two days before his second birthday. Brian and I are very aware that there is the possibility that Caleb may have equilibrium issues due to CHARGE, however, we are not convinced that he may not be walking yet due to his delays. Either way, whatever we can do to help Caleb progress in regards to walking is another priority. So we discussed the possibility of a pediatric walker. His PT is going to do some research and will let us know this week when he returns. I don't think the walker is a bad idea as this may give Caleb some independence as he really does not like at all to walk supported (while we hold his hands). So maybe the walker would be a welcoming thing to Caleb.

I also just recently got the video from the news story from Christmas that they did on Caleb. I will be posting that soon, so check back!

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

Again, thank you for checking in on Caleb!!

God Bless you all!!

God Bless Caleb!!

Cake, Bath, Potty OH MY!

So there have been a couple exciting developments.

1. Caleb has been exposed to cake on several different occasions: his first and second birthday and the anniversary of his Thymus transplant. He never touched it. By chance, we put a piece of cake in front of Caleb as we are always try different items to see if he will eat them. Well he didn't quit eat it, but he did touch it, pick it up, and break it up into pieces. This was huge, as this is another texture that he touched and continued to touch! Brian and I laughed so hard and were so excited about his new found interest in Cake. Oh and thanks Pap Ron for giving him such a big piece too-what a clean up! HA HA

2. Bathtime: Caleb continues to love bathtime and his new found discovery is bubbles. Oh how interesting those bubbles are! You will see in the montage how close he looks at the bubbles! So cute!

3. POTTY!: The other day at the end of Caleb's bath he wouldn't let me get him out of the tub he sat there for awhile and looked down at his p-bug. Then he started peeing in the tub. When he was done peeing he was then ready for me to get him out of the tub. SOOOO I decided it was worth a shot to start potty training him. We do have many obstacles: he still doesn't walk and he, at this time, can't communicate that he needs to use the potty. But, hey, it is worth a shot. So I went and got a potty for him yesterday. I got him the potty that plays music once he 'goes' so that will be his reward. Another obstacle, we can't do 'hoorays' or 'yeahs' as this is too much of a sensory overload for him and will completely avert him to the potty. So today before his bath, as I remember my friend Jenny did this with her daughter Keira, I put him on the potty and I couldn't believe it but after being on it for only a couple minutes, HE PEED! The toilet started to play music, but I am not sure if it is loud enough for him to hear (due to his hearing loss). So I calmly went over and sang to him, as he loves music, as his reward. He knew he did it I could tell in his expression. So I stood him up an showed him what he did and he smiled. So, I then decided that I would try the potty training experience with him. Before bed I put him on the potty one more time and to he peed again in the potty! Such a smart little boy! I know that due to his syndromes that this could be harder for him than most children and he probably will have his good days and bad days, but I know he can do it.

Make an on-line slideshow at www.OneTrueMedia.com

Thanks for checking in on Caleb!! God Bless you all!!

God Bless Caleb!!

That's My Boy!

So Caleb has begun to understand what signing is. He has really started to notice that we are signing to him and that is a pathway for communication for him to 'talk' to us. It is so amazing how he has begun to pick up on a sign so quickly and know what it means. I literally taught him the sign for a couple colors lastnight and he literally within minutes was signing it and trying to verbally say it to me. He is so smart! I know every parent says that...but wow what amazing strength my little boy has. He has also tried to verbally communicate with us too. It is such a great feeling to now to be able to somewhat communicate with him. Wow, what a feeling. He has really started to look at our hands wanting us to sign as well as verbally over-enunciate the words to him. I know, as always, that their will be times at which he may regress and may not want to communicate and do signing or be less verbal but he can do it. He is one smart boy!
Another new thing that Caleb does is when it is feeding time and I am getting ready to hook his feeding tube up to his Mic-key button, he points to his Mic-key button in his belly to show me where to attach his feeding tube and pulls up his shirt for me so I can attach it. How awesome is that?!?
He still does not want to eat by mouth, but we work at it everyday. You can tell that he is interested as he does salivate when food is placed in front of him, but the poor thing is so scared of the concept. He will get it, I know he will! It may not be tomorrow or next week, but he will do it on his own time as Caleb always does!
I have also started to begin the paperwork for Make-A-Wish for Caleb and contacted his doctors to ask them to write letters on his behalf. I was literally brought to tears when Caleb's doctors responded and what they said. We are truly blessed to have some of the finest doctors in our lives. We love you all. So the question is...do we have a wish? ....NO!... It is so hard to make a wish for a lil' one who is not completely verbal and cannot tell you what he wants, but you know if anyone deserves nothing but the best he does. We also have to keep in mind of the immunosuppression issues...so we are thinking. We are open to any suggestions that any of you may have, please feel free to suggest anything by posting a comment.
I am sorry again for the delay in posts...please forgive me! Thanks!

God Bless you all!!

God Bless Caleb!!

Much needed update

Hello all....Sorry for the delay once again in updates. But I wanted to keep the last update up there as long as I could as we all, you all included, have been waiting for a post like that for so long. WOOOHOO

We are still awaiting some clairifications from the doctors on what we can and cannot do with Caleb within the next couple of months and up to the big immune test in January 2010. So when I do get those updates I will let you all know. We do know that Caleb will finally be able to meet a short list of people around March. We are so excited that Caleb will get to meet his Uncle Chad and Aunt Jen, Uncle Ben and Aunt Stacy, and my best friend Jen Straub (Aunt Jen). We haven't gotten the 'okay' on him meeting kiddos yet, so we will continue to watch Jon and Kate plus 8 for Caleb to see other kids and of cours for me to get to watch it too (I love that show) until Caleb can meet his Cousins-Samamtha, Casey, and Hunter. We and so are all of them are so excited that they will get to 'see' Caleb.

On the medical front Caleb continues to have a pretty low heart rate since he was admitted for that nasty line infection back in January. We are not sure why he has this low heart rate. We have monitored it on a monitor here at home. But Dr. Frangiskakis now thinks it would be smart to get an EKG to check to make sure Caleb's heart is okay. We are waiting on the EKG order and then will be scheduling it. As soon as I know more, I will post. Also, since Caleb's immune tests weren't up to protocol standards, we will be doing another tetanus shot soon and hopefully the results will be up to protocol. Fingers crossed!

Caleb has definitely started to get the concept of signing. It is great to start being able to communicate with him more. He is very smart-but what mom wouldn't say that. HA HA He loves saying the word 'alligator' and signing it. So cute...Brian and I are looking for a stuffed alligator for him. He also loves giving kisses, I personally cannot get enough of that! He is crawling and cruising more. We are also trying to transition him out of his crib, but haven't found a safe option yet. We will though-I am determined (and so is my friend Jen-thanks Jen)! He also has asked to get up in his highchair more, which is great milestone, as anytime he is in that we do feeding therapy. So my hopes are is that he will become more tolerable of this situation. He even signed, once in the highchair the other day, 'eat', and when I asked him if he wanted a bite he pointed to him mouth and opened it AND let me put a spoonful in. He didn't swallow, BUT that is absolutely amazing for him to communicate with me regarding feeding and to want me to put a bite in his mouth. Since then he has signed for a bite but has shut his mouth when I put a spoonful to his mouth. But like I have said before, to have a day like we had the other day proves that he can do it, we just will have to be patient, as always, because it could be few and far between.

Well I have to go tend to Caleb, but wanted to post. I will start posting more reguarly again (just wanted to leave that last post up for awhile) Thanks all for checking in on us and feel free to leave a comment by clicking on the 'comment' link.

God Bless you all!

God Bless Caleb!!