Pumpkin Patch (UPDATED)

Hi all, I hope everyone is enjoying this month's festivities. We were able to go to a pumpkin patch recently,first time for Caleb. We had to move quick though as a storm was moving in.

Caleb started smiling when he saw all the pumpkins. He eventually walked around a little bit holding my hand and he did great. We picked out two pumpkins, which we later carved. He was in shock at that whole process too. He was so cute watching Brian and I when we carved the pumpkins.

Well, Caleb is still fighting his nasty cold. He is on another round of antibiotics. Poor guy. Hoping he can shake this cold soon! He is supposed to get his next round of shots/immunizations next week, but I am not sure if he will if he is still sick!

Caleb got to dress up for school for Halloween this year, he is spiderman! He won't wear the hood as Caleb is really averted to any type of hat, which will make dressing this winter difficult. But he kept his costume on all day and he looked very cute! I only got pictures of him at school with my phone, so I will take more Halloween night with my camera to post on the blog. He looks so cute as Spidey!

A couple of our friends are going trick or treating at our local zoo tonight. I would love to take Caleb but I am not sure if it is the best idea. One, he hates to wear hats and unless I can figure out some way to keep a hat on his head (even the ones that have the Velcro strap he manages to take off) it is a definite 'no go' as he has to stay warm especially with still having his cold. Two, I am not sure how he will react to that many people and the 'fright' aspect. So it looks like I am leaning towards a 'no go' as of right now. :(

As far as social security, I have contacted many local politicians and only two responded and were not a great deal of help. So needless to say I don't feel a strong urge to hit the polls this Tuesday to vote. Such a change for me as I used to be so big into politics. Anyway, we are filling out the paperwork to file the appeal. Praying they approve our appeal and don't make us pay the money back.

UPDATE: Got a letter of response in the mail today from Senator Rockefeller in regards to Caleb's SSI. I have to sign a form to allow him to look at the info, per the Privacy Act. WOOHOO I hope he can help us! He has helped or tried to help in any way every time I have asked! Thank you Senator Rockefeller!

I also wanted to say a quick thank you. I often wonder if I thank everyone enough. You all have been so wonderful to our family through the past four years. We are truly grateful for the emotional and physical support you all have provided for our family. It has meant so much and continues to mean so much to us. I thank you all for understanding our situation and our special circumstances. Thank you so much!

Well all, I have an itty bit waking up wanting to be fed. I will post Halloween pics as soon as I can!

God Bless you all!!

God Bless Caleb and Camryn!!

One of those tearful days

So I was going through the mail and received a letter from our wonderful government regarding Caleb's disability payments. The letter indicated that they want to be repaid back all of Caleb's monthly disability payments back to October '08 yes that is right of 2008. So I called the national number and the only explanation the lady could give me there was that we owe the amount specified in the letter, no explanation of why. So then I called our local office and the explanation I got was they just got through all of our information we supplied which makes no sense at all. You supply information every couple months along with pay stubs. BUT NOW TWO YEARS LATER they want everything back. What is wrong with this scenario? It takes them that long to go through everything? Are you kidding me? Nonetheless, I FULL well know that the months that we submitted pay stubs for Caleb should have gotten disability payments based upon the criteria set by our wonderful government. So the lady at the local office was of no help, all I can do is file an appeal while our government wants a lot of money back. I am disgusted. I am disgusted at the fact that we all know and have seen individuals out there that totally abuse the system and get help when they shouldn't and then there is an individual such as Caleb, who was initially told by the SSI 'he wasn't disabled enough' to get disability, who finally was approved for disability but now they want all their money back. Our government is ridiculous. I have been in the past a pretty active participant in supporting our local politicians and government, why? so they can do stuff like this to my son? I will not vote or partake in any elections anymore. They are all corrupt. They worry about themselves and not about how THE SYSTEM is failing people such as my son. I am sorry to have such a bitter post. But why do I continually have to fight with our government to get him disability. It took over a year to get him a state disability medical card. It shouldn't be this hard. Our government is getting worse and worse by the day. How can they do this?!?

Please say a prayer that Caleb get the help he deserves!

God Bless you all!!

God Bless Caleb and Camryn!!

Another infection?

So Caleb has had about three colds since the start of the school year. Unfortunately, this last one seems like it is a little harder for him to kick. This cold started about a couple weeks ago after we had a trip to the ER after he had a reaction to a vaccine. Which, I would love to note is the first ER trip that did not result in a life-flight! How about that for a milestone?!? Back to the cold..we were hoping to attend a Family Fun Night this evening at Caleb's school as Bri and I were so excited to attend something like this and see how Caleb plays with other kiddos and just to be able to go to something like that is a big deal to us as not to long ago we weren't sure we would be able to do something like this due to Caleb's medical condition. Well needless to say, Caleb has been running a fever off and on and we just got back from the hospital to get some chest x-rays and we will see the doctor this evening to try to figure out what is causing the fevers (as he still can't tell us where he doesn't feel well) and to try to get him some help to get rid of this cold. Looks like we will have to wait until the next family fun night.

Also, Caleb's school pictures came back. His teacher was so excited to show me the picture when I dropped Caleb off at school on Monday. I couldn't believe my eyes the pictures were perfect.

He didn't hide his face and he smiled, of course I did hear from a little birdie that his teacher and aide worked very hard to get him to smile like he did and not to hide. Thanks ladies! There is still a little evidence of his black eye that he got from a fall in school, but we don't mind. He looks great! So I held it together and then when I got back to the car from dropping him off I started crying. I remember praying for things such as this when Caleb was so sick in the hospital. Thank you Caleb for fighting so hard when you were sick. We love you and are so proud of all of your accomplishments. Keep it up lil man! We love you!

Thanks for checking in on Caybay!

God Bless you all!!

God Bless Caleb and Camryn!!

Bumps and Bruises

So school is going well, however, since Caleb is new at walking he takes things too fast and has fallen a couple times in school. He actually gave himself a black eye when he fell and cracked his temple on a chair. His teacher is wondering if he would be safer wearing a helmet while in school so he can be independent yet safe. We okayed the idea so we are looking into helmets. I also asked the school and his physical therapist if she could go evaluate him at school to see if she could make any suggestions. She will be visiting his classroom this week to see if maybe some sort of brace could help him be more stable.

Caleb has been very adamant at not wanting to wear his hearing aid and we aren't sure why. We are taking him to his audiologist this week to get a program put on his hearing aid that will allow him to hook up to the FM system at school.
Here is a little bit about how an FM system works:
Personal frequency modulation (FM) systems are like miniature radio stations operating on special frequencies assigned by the Federal Communications Commission. The personal FM system consists of a transmitter microphone used by the speaker and a receiver used by the listener. The receiver transmits the sound to your hearing aid either through direct audio input or through a looped cord worn around the listener's neck.

Personal FM systems are useful in a variety of situations such as listening to a travel guide or book review, in a classroom lecture, in a restaurant, in a sales meeting, or in a nursing homes or senior center.

FM systems are also used in theaters, places of worship, museums, public meeting places, corporate conference rooms, convention centers, and other large areas for gathering. In this situation, the microphone/transmitter is built into the overall sound system. You are provided with an FM receiver that can connect to your hearing aid (or to a headset if you don't wear a hearing aid)

I am hoping he will get over this aversion to the hearing aid, as I think the FM system for him would be great. Crossing our fingers that he gets used to his hearing aid again very soon. I have also asked the audiologist if we can fit Caleb for a piece that goes on the hearing aid to help it not flop on his earlobe as this is the earlobe that folds over a little bit.

Well I just wanted to post a quick update to let you know where we are!

God Bless you all!!

God Bless Caleb and Camryn!!

Where to Begin..

Okay so once again sorry for the delay between posts but we have had A LOT going on!

The last trimester of the pregnancy was really rough and pretty much per docs orders rendered me on a low activity level. So I was very busy just doing stuff around the house to keep us all sane and took a break from the blog! Thank you all for the emails though and concern about Caleb. I am back now and will update more regularly!

So where to begin..

Well Mr. Caleb started school and he is doing awesome. It was very hard for me the first day to drop him off but it was so exciting in the next breath. We were originally taking Caleb in daily in his stroller. However, the last couple days Bri or I walk him in holding his hand. Last Thursday, we were expecting him to be brought out to the car using his stroller but to our amazement he was walking out holding his teacher's hand. This is a huge step for Caleb as he usually only walks holding Brian's or my hand. So great to see him walking out with all his classmates. He is also saying some words in the classroom and interacting with his classmates. This is also a big step for Caleb as he usually has to take a while before talking around others. He did catch a cold his third day in which he brought home and shared with the whole family. I am sure this is the first of many bugs he will bring home and share with us, but I am happy to say that it is nice that we don't have to be so scared when he got sick. Of course there are still some bugs out there that we have to watch out for, i.e. chicken pox, but it is nice that not EVERY bug is so scary! Another awesome thing is his teacher gets so excited about the smallest things like we do so it is so great when we pick him up and she tells us all about his exciting developments and progress. He even said her name one day in class which tickled her pink. It is so great to see that they are so invested in his development too! He is amazing isn't he?!?!

Caleb is also now a big brother! Camryn Jayde Hlebiczki was born on August 24th at 8:54 a.m., 19.5 inches long, and 7 lbs. 5 oz. She came out screaming. She is beautiful and we are so happy she is here! She does have colic so it is making for some long nights, but we are all slowly adjusting. Caleb will make sure to let us know when she is crying. He has only touched her a few times, but is very curious about her as he watches her when we are holding her or when she is sleeping.

So this is a pretty short update, but I wanted to let you all know that we are okay and I will be updating more regularly now that we are trying to get into a routine.

God Bless you all!!

God Bless Caleb & Camryn!!

Happy Birthday my Wonderful Four Year Old

It is hard to believe that Caleb is four years old today! Wow, my baby is four! I remember praying that he would make it to his first birthday! Wow!

We had a party this past weekend with family and it was so great for him to be around his whole family and cousins again. Just watching him during his birthday celebration was amazing. I can't even put into words what that day meant! He is such a strong little boy. We are so proud of you Caleb, keep up the great work!

Brian and I got him a fish tank for his birthday, which he is infatuated with. He falls asleep watching his fish. He even will go up to his room after coming downstairs for the day to go check on his fish. Too cute! He also received MANY other gifts for his bday and was not scared of one. Which is a huge step in regards to his sensory aversions. Before, it could take Caleb's days, weeks, maybe never, to warm up to a toy that made noises or moved.

Brian and I are amazed at how much he has seem to grown in the last couple of weeks. He is so amazing! He is getting more comfortable with his therapists also.

A huge development for Caleb is it looks like he will be going to pre-school in the fall. We are so excited for him. He will be in a classroom with 10 other differently-abled kiddos, so the class won't be too big. He will also get therapy while he is at school too. I think this will be so great for him. I definitely think it is going to be harder on me than on him. I am a mess thinking about being away from him. I start to tear up...but don't get me wrong I definitely want him to do this it is just going to be hard. I am so excited for him!

Well, I will post birthday pictures as soon as I get some uploaded. A lot are on my phone too, so it could take me a few days. Again, sorry for the delay in posts, we have been a little busy with summer activities and getting ready for baby girl.

Thank you all for checking in!!

God Bless you all!!

God Bless Caleb!!

Beach Vacation

Wow, did time fly. We had a great time. Caleb did great traveling! It was really windy the first two days on the beach and Caleb didn't like it, but he got used to as the week went on. There was an indoor pool at the condo, which Caleb did great in. One day he even let us put floaties on him (huge step for his sensory issues) and he did his version of a doggie paddle while we held him. He did great. I am hoping we can get him to doggie paddle on his own by the end of this summer. He still was not a big fan of the sand or the ocean. He eventually did play with some shapes in the sand, but he remained on the blanket and would not sit in the sand. We carried him down to the water too a couple times, but he didn't really want anything to do with it. However, he did tolerate sitting on the blanket on the beach A LOT better this year, so he did make progress. We were able to go out more too this vacation and do more dinners out and shopping. We had so much fun, to live normal and interact with people was such a great feeling! We had so much fun and it was over so quickly. I really wish we lived closer to the beach! Well I have put together a quick montage of some pictures from the beach (I created the pictures to have captions, but some of the features of the software I use aren't working, not sure why), enjoy.

Make photo slide shows at www.OneTrueMedia.com

God Bless you all!!

God Bless Caleb!!

Try to Moderate

Well all, as I said, the limit on invites was a 100 and the requests went well over that. So I am NOT going to not invite people due to the limited space as you all and your support helped our family through such difficult times. I will never be able to thank all of you enough for that. So I am gonna to try, for now, to block anyone trying to make anonymous or inappropriate posts. Maybe that will control it for now! Thanks for the suggestions!

As far as Caleb's cold, he didn't wake up this morning, coughing like he was barking like a dog so that was great. He still woke up coughing, but the cough didn't sound as nasty! Hopefully the meds and his immune system are already working! I am so proud of him as he has made another small achievement. Caleb would always fight me when it was time for nebulizer treatments and the last two treatments he has sat calmly and put the nebulizer in his mouth and breathed the medicine in. So proud of him!

His g-tube hole has looked the same the last couple days. I am hoping it isn't done trying to close and will get smaller. We shall see. We took the g-tube out on March 30th, I was really hoping that it would be closed by now. I don't mind changing the bandage, to prevent the leaking, several times a day. But, I really don't want him to have that surgery. We are going to the beach soon, and I am gonna have to cover it when we go down on the beach so sand doesn't get in it. I am thinking about doing the same thing that I used to do with his g-tube and IV and put that Press -N-Seal on it, but I am not sure if when draining if it will stick. I think I may have to go bug some people at the local hospital for some Tegaderms (what you put on IV's) so we can use that when around the sand. Gotta get a plan together for that as far as that is concerned.

So as I mentioned, we are going to the beach again. This will be Caleb's last beach trip as an only child! So crazy to think of it that way. Anyway, we are driving as we did last year. But this year I will have less medical stuff, a lot less, to pack. So hopefully we can all fit more comfortably into the car this year. I had to start packing a couple weeks in advance of our beach trip last year to account for all the medical stuff. This year I did not have to start packing so early.

Talking: Caleb continues to mimic well. But when in public or around others he either doesn't talk at all or says few words. So I am hoping that the more we get him out in public the more he will open up and start talking and becoming more verbal for others.

Caleb has just started walking short distances again, as he took a break when he wasn't feeling too well. However, he has not wanted to go near the steps since the day I took that video from a couple posts back. I am hoping he will try again, and is not regressing as he has done in the past with walking.

We also had to take a break from therapy this week, as this is actually the first day that I think Caleb seems better. So next week he will return to therapy and they will get a week off for vacation.

Well all, I must start getting some stuff together for the beach! So exciting. Check back for updates!

Thanks again for checking in on our lil' man!

God Bless you all!!

God Bless Caleb!!

Decisions....Decisions...

So the response to have everyone's emails to get them on the 'invite' list to make Caleb's blog private has been so so so heartwarming. Thank you again for wanting to check in on Caleb and his continued achievements. The limit of invities I can send out is 100, and I am going to hit that limit. SO.........now what to do, what to do.....I am NOT going to not invite anyone due to lack of space. So now I have to consider whether to move his blog to a site, such as WordPress and pay a monthly fee for a host site so it can be password protected OR stay here and just moderate the comments. Oh what to do. Any suggestions would be appreciated!

Also, on the cold front. Caleb has been feeling pretty crummy this week. We have kept the fever away (knock on wood), but this morning the congestion is moving and he has one heck of a cough. I knew even before I called the doctor that he was going to need an antibiotic and breathing treatments and sure enough, that is what the doctor ordered. So hopefully the meds in combo with his immune system (come on immune system) will fight off this bug.

Caleb is schedule for his next round of immunizations on Monday, but not sure if he will be getting those with this cold or not, we shall see. Also, the blood draw to check Caleb's calcium is scheduled for the 20th. If the results come back fine, Caleb won't need the supplement of Calcium and Vitamin D to control his hypoparathyroid and hypocalcemia. How exciting is that?

We are continuing to watch that g-tube. I really hope and pray that hole closes up so he doesn't need surgery. That surgery would be evasive and would require him to get a nasal feeding tube for 24 hrs, which is something that could possibly hurt all his strides at getting over his oral aversions. So, come on g-tube hole close already!

Well, I am off to get meds from the store and to go pick up nebulizer tubing. I hope everyone has a great day!

God Bless you all!!

God Bless Caleb!!

A Little Privacy Please

So I have decided to make this blog private. It is the right thing to do. I actually have been wanting to do this for about a year or so. So I am gonna try it. Unfortunately, Blogger doesn't give you the option of making a screename and password when arriving at the blog, like other sites like WordPress does. Blogger allows you to 'invite' people to view the blog. To invite people, I will need your email address and then from their you will receive an invite email from Blogger to join Caleb's blog. So if you want to continue to view Caleb's blog please send me your email to, sarah_hlebiczki@comcast.net. I will be setting this up very soon! Thanks everyone!

Have a great day!

God Bless you all!!

God Bless Caleb!!