Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Saturday, April 25, 2009

Meetings, Meetings, Meetings

Well we have had a lot of meetings lately.

Thursday I had a conference call early in the morning with Birth To Three and Ohio County Schools discussing the transition from Birth to Three into the Ohio County School System. They have agreed to provide a home bound teacher for whatever services that they deem necessary when they come in to do his testing in June.

The next meeting was for a psych evaluation, as it is needed for us to apply for federal assistance called Waiver for Caleb. Waiver, is a very hard system to get into. Just like any other assistance for special needs kiddos, the paper work is ridiculous and has to come from many different people. There is usually a waiting list and specific criteria that have to be met. The psychologist came to the home on Thursday, and in her opinion, she believes Caleb should qualify for Waiver. Now we will just have to wait to see if the State agrees.

Last and definitely not least was our meeting with Make-A-Wish Foundation. The lady that came to the home was so nice. So we went for it, we asked for the foreclosed house next door to be torn down so we can have a yard for him, get him outside so he is not in the house all the time, and put different 'therapy stations' in our yard over time for him. She really wasn't sure if they would go for this and asked us if we had a second wish, just in case. We couldn't think of one....it is so hard to pick a wish for a child that can't leave the home. So she said she was going to ask the 'higher ups' and get back to us! So we will see! I will keep you all updated.

Thanks for checking in on us!!

God Bless you all!!

God Bless Caleb!!

Monday, April 20, 2009

All I can say is 'Wow'

Well I was speechless the other day and once again was amazed and so proud of my little boy.

I was eating some popcorn and as always, I let Caleb touch the food I am eating if he wants. So he did. Then what happened next was amazing. So when I was eating my popcorn, Caleb stuck his hands in the bowl and grabbed some. That alone was a feat in itself as it is a very weird texture and the fact that he was even touching it was great. He then held a piece in his hand, crawled to Saba, and threw it to her. But wait it gets better. He did the same thing a couple times, and then....he looked at me, as by this time I was standing up with the bowl in hand, said 'aba (which is Saba our wonderful dog), then signed 'eat' (assisted with the verbal noise of eating) and then signed 'more'. I wondered if he was trying to let me know he wanted to give Saba more to eat. So, I leaned down and sure enough he put his hand in the bowl and then went over and fed her! I couldn't believe it! My baby just signed a sentence to me telling me what he wanted! So awesome!

Way to go my lil' man. We are so proud of you. You are amazing!

Thank you all for checking in on us again and for enjoying moments like these with us!

God Bless you all!!

God Bless Caleb!!

Thursday, April 16, 2009

Meetings, Walker, and a New Trick

Our meeting with Birth To Three: we set new goals and discussed the need for an educator to start coming in from Ohio County Schools when Caleb is of pre-school age and transitions out of Birth To Three. First the goals were reviewed as this is a main part of Birth to Three. The therapists set goals with the parents of what you hope can be covered over a certain amount of time. Ours didn't change much, but there were slight improvements. We did make some strides since our last set of goals. He now tolerates a plate of food in his area and he is now crawling! So those milestones may seem small but they are big strides for him. Some of our new goals were: 1. to get Caleb to willingly accept food and drink in his mouth. 2. to be able to communicate better-continue to build his verbal and nonverbal communication skills 3. to try to get Caleb to go up and down steps 4. to try to get Caleb to walk, using whatever equipment (i.e. a walker) that is necessary. The goals are there fore the parents to, if needed, ask the therapists what they suggest to do to try to achieve those goals. So I pray that we can do what we can to get him to start achieve if not achieve those goals.
Our meeting with Make a Wish Foundation: Unfortunately, this meeting had to be re-scheduled. We were really bummed! The representative called about an hour before the meeting and said she had to re-schedule. So we are now on for the 23rd. I did research the possibility of a sensory room for Caleb. It does seem like a great idea for kiddos with sensory issues. But I think, and Caleb's therapist also agree, that this would be way to much for Caleb and scary for him as his sensory issues are pretty bad. So I think we are going to, thanks to a lot of our friends encouraging us to try, ask to see if they would be willing to tear down the foreclosed house next door. We do not have much of a yard and since Caleb is not able to leave the home due to his isolation precautions, we though the yard would be the best thing for him. He could get outside and do different activities. Our goal would be to put sensory 'stations' in our yard. I would also like to see if we could get the yard fenced in as we live on a very busy street and Caleb is deaf in one ear and has significant hearing loss in the other ear. So for safety reasons, that would be awesome. I am not sure if they will go for this or not, but it is so worth a shot. This would be awesome for him if we could get him out of this house when the weather is warmer and get him to play, but be doing therapy at the same time. We will see! I am really really praying they grant that as his wish!
Caleb's PT was able to come yesterday and he modified Caleb's walker. Caleb seemed to be a little more accepting of the modifications and not so scared of it from a sensory perspective. But as we have seen before, he can become scared very quickly. So I am trying to think of ways to decorate the walker to make it less 'scary' from a sensory perspective for him. I hope to updating soon that he is using it and loving it. Fingers crossed! We still also aren't sure if this is the best walker for Caleb! There are many walkers, so we are going to try this one a little longer and if it doesn't work, we will try a different one.
New Trick:
We put Caleb on the stairs yesterday to see what he would do. Well, for those of you who saw the post regarding the big boy bed, one of his MANY sensory issues effected his 'touching' the bed. Same happened with the stairs. We placed him on the steps to see if he would crawl up the steps. He could not stand his belly touching the stairs. He flipped! He shut his eyes and cried. So we turned him around and let him sit on the step. Then we helped him go into a standing position a few times from the sitting position as we are trying to teach Caleb how to squat also and this exercise will build those muscles. He did great, he required little help to get to the standing position. Then later on that day, I was so excited, I took him back to the steps to see if he would do it again and he did. Then....he was getting so excited about it...he did it on his own! It was awesome!

Thank you all for checking in on us again!!

God Bless you all!!

God Bless Caleb!!

Monday, April 13, 2009


Here are some Easter pics. We had a very nice day!

The Easter Bunny even stopped by our house a couple days early so Caleb could see him through the window! Caleb didn't really know what to make of it as he really has never seen anything like that before as we haven't ever been able to take him to get pictures taken with Santa or the Easter bunny, so needless to say for a child that is a shut-in and in isolation precautions it was definitely something new, but so so neat for him to see and experience.

The piece of paper with eggs colored on it was going to be how I thought we could try to communicate with Caleb on the fact that he has to hunt for Easter Eggs. But he decided to get up really early Easter morning and when it was time to hunt for eggs he wasn't in a good mood at all so we decided to forgo the Egg Hunt. Maybe next year...

He got a lot of wonderful gifts from the Easter Bunny and his grandparents...cars, trucks, paints, books, DVDs, etc. He also got some candy, which I hope he tries to eat just a little bit of it...We will see!

We are also anxiously awaiting our busy day tomorrow. Tomorrow we meet with Birth to Three to discuss his transitioning out of their program and we will see what he will need as far as care to continue his therapy. Also, we have our meeting with Make a Wish...and we still don't have a wish! Yikes!

I will post as soon as I can to update everyone on the meetings!

God Bless you all!!

God Bless Caleb!!

Wednesday, April 08, 2009

Make a Wish!!

Great News! I just get off the phone with the Make a Wish Foundation and they are going to grant Caleb a wish. This is so exciting. We had thought about doing this while Caleb was at Duke for his transplant, but honestly, he was so sick and fighting for his life that it wasn't the best time. We finally filled out the beginning paperwork a couple weeks ago and I got a call this morning letting us know that he has been approved and can MAKE A WISH! We are so thrilled. If anybody deserves it this little boy does! We still aren't sure what his wish will be as Caleb can't verbalize a wish, so that it a lot of pressure on Brian and I that we pick the right wish. Our meeting with Make A Wish is next Tuesday, so I will keep you all updated on the progress and if we come up with a wish....

God Bless you all!!

God Bless Caleb!!

Tuesday, April 07, 2009

Signing, Hearing, and Transition

Well Caleb continues to pick up more signs! I introduced 'where' to Caleb and he picked it up within 10 minutes. Which is so much fun, because I can now sign and ask him questions....and he understands, as long as you keep the questions very short. For example, we sign 'where's duck?' or 'where's dog?' and he finds them. He also continues to recognize an actual letter, from his letter toys during bathtime, while he's in the tub and associates those letters with certain things. For example lastnight he found an 'L' and growled like a lion. I also have a habit if there are two of the same letter I would place one above the other on the side of the tub. I caught him lastnight doing that exact thing! So amazing!
We have noticed that the words in which he does verbalize, the first letter of each word is missing. I asked his speech therapist about this yesterday and she indicated that this is very common among children with hearing impairments. So we are really trying to over-enunciate the first letter/sound of every word to help him hear it. I am also trying to get him to pay more attention to my lips, so maybe he can get better at lip-reading.
Caleb is also almost three which means he will soon be transitioning out of the Birth To Three program, which is all his therapy, and will enter into coverage/services provided by the Ohio County Schools. We are scheduling a conference call with Ohio County Schools to see what we need to get done to get him those services.
So lots going on. I am also planning to schedule his plethora of needed clinic visits. Soooo many docs he needs to see, should be about 2-3 days of clinic visits. I am hoping to get them all planned after cold/flue season is over.
Well, I have to go feed lil' man!

God Bless you all!!

God Bless Caleb!!

Thursday, April 02, 2009

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!!