Not Sure What is Going On

So we have had some sort of virus(s) going through our house.  Caleb woke up Sunday sick and then Camryn woke up Wednesday with a tummy bug.  We had though Caleb shared his germ with his sister, but he then came home yesterday sick from school. So is it the same bug, different bug, a medical issue?  We shall see.  Please keep my kiddos and family in your prayers.  It has been a rough week with illness and some other family issues going on and we could use some thoughts and prayers.  Thanks friends.

God Bless you all!!

God Bless Caleb and Camryn!!

Blood Draw and Ears

Hi all,
So the blood draw went well.  It was one stick with some maneuvering.  They had to wiggle the needle around once they stuck him to get in to his vein.  His veins are so little and tough, from being stuck so many times, that sometimes when they think they have a good vein, it still proves tricky to get in to the vein. But they got in and now we wait for the results. 

We noticed in the last few days Caleb has been pushing on his hearing aid a lot when we think he is trying to hear better.  We also noticed he has more crud coming out of one of his eyes too, again.  So we called his pediatrician and got in there ASAP.  Diagnosis, double ear infection.  We think this may be why he was running a fever too on Saturday. He is such a trooper.  You really, despite Saturday, wouldn't even know he was/is sick.  They say CHARGE kiddos have a high tolerance to pain.  Well the doctor said the ear infection was nasty and this proves his tolerance is high. 

Thanks all for checking in and your emails and text messages.  Thanks for keeping us in your prayers!

God Bless you all!!

God Bless Caleb and Camryn!!

Good Vibes Please :)

Hello all,
Well Caleb had a rough weekend.  He woke up early Saturday morning and wasn't feeling well.  We think he was having some constipation issues, which in turn for kids with shunts can be even more uncomfortable as that can cause headaches and pressure as the fluid from his brain has nowhere to drain.  We were told a while back that some kids with shunts, who get constipated, can experience intercranial pressure and headaches and we are wondering if this is what ocassionally happens to Caleb when he has his GI issues.  Poor kid was pretty miserable. He did wake up Sunday a much happier kid, thank goodness.

I will be taking Caleb after school today to get blood work done to check his levels for his new dose for his Thyroid Disease.  Please send him good vibes that it is a quick one stick test.  Last time, was not and I hope this time goes a lot smoother.  Thanks!

God Bless you all!!

God bless Caleb and Camryn!!

Silent Stressful Moments

We are dealing again with Caleb getting upset and not knowing why. It makes you feel, as a parent so helpless. I would love for him to be able to tell me what hurts or other things, like: what makes you upset, what's your favorite color, what's on your mind, hear you call me mommy, tell me how your day at school was, what do you want to be for Halloween, what do you want from Santa, what do you like to eat, what do you want to do, or just sit and talk with me. I would just love to hear the random thoughts on his mind. So next time when you get annoyed with your child asking 'why?' nonstop,or being a chatterbox, enjoy it. Be happy they can communicate with you. Don't take it for granted.

God Bless you all!!

God Bless Caleb and Camryn!!

Parade and Tummy Trouble

So Caleb had a rough start to the parade but settled in and really liked it. He was smiling and everything. He didn't feel 'safe' enough to stand, so Brian and I took turns holding him and Camrynand he did great. It was emotional for Brian and I to see Caleb enjoy something that we knew he would love if he could get over the fear of it. We had a great time.


We went out to dinner lastnight and Caleb started to get really sleepy. At first we thought maybe he was tired, which is odd for Caleb. He cant tell us what's wrong, which is hard for us as we want to help him and him be able to tell us if he doesn't feel good or tired, etc. By the time our meal came, he was laying in my lap and fell asleep. When we were almost done with dinner he started dry heaving at the table. We quickly left and he had a tough ride home. We got him on the couch and he relaxed somewhat and got some sleep. He seems better as the day goes on, but we aren't sure what's going on with him. We were supposed to go to a bday party today for my best friend's daughter, but I didn't want to take him and possibly get everyone sick for the holiday. Could this be a tummy bug, GI bug, other GI issues, thyroid? We don't know. I just wish my lil boy could talk to me. Just to say 'mommy I'm tired' or ' my tummy hurts' or just to tell me what's on his mind. Yes I'm having one of those moments. It will be fine. Just wish I could do more to help him communicate.

God Bless you all!!

God Bless Caleb and Camryn!!

Signing

Hi all!  We continue to work on signing with Caleb as we want him to be verbal but yet have the capability to sign when he can't get his thought across.  We have been working on the ASL sign for I love you. not the easiest of signs.  Lastnight before bed, Caleb signed it back to me and said 'I love you' when I signed it and said it to him.  Truly and awesome moment.  These are the little things in your life that mean so much and put things into perspective.  I am so proud of my little boy.  He is such a fighter I have learned so much from him, he has taught me so much.  Thank you bubbers!

We are trying something big tonight, we are trying the Christmas parade for Caleb and Camryn tonight.  Caleb watched parades on the computer while he was sick, but has yet to see one.  I am not sure how he will handle this.  It may be way to much, sensory-wise, but we have to try to give him that opportunity.  He may not like the noise and crowd and we may leave as quick as we got there, but I hope he gives it a chance and sees a band or two.  I think he will like it, if we can just get him to stick it out and see the parade.  Wish us luck and keep him in your thoughts tonight that such a wonderful thing, doesn't scare him.

God Bless you all!!

God Bless Caleb and Camryn!!

Immune Results

I just received the following email from Caleb's Immunologist, Dr. Markert. I think I'll let the email speak for itself.

Dear Sarah,
We reviewed the results in lab meeting – the T cell numbers are in the top quarter for patients after transplant. So I am very happy. There was one revision needed in the report. Hopefully I’ll have it tomorrow. I’ll call when I have the final report.
Louise

Isn't that awesome?!?

God Bless you all!!

God Bless Caleb and Camryn!!

Hi all, well as I am waiting to get this site more secure I am going to continue to update as I don't think it is fair to leave everyone in the dark especially with how you all support us.

Well Caleb's surgery is schedule for New Year's Eve. He will have his dental work done to fix his teeth that have been damaged to being on IV nutrition/reflux and from his grinding issues, they will do an MRI and Catscan of his ears to see what his anatomy of his ears looks like to see if he is a candidate for some type of implant, they will put tubes in his ears, and they are going to revisit his eye drainage issue, if we can get his occularplastic surgeon in the OR as well.  It was noted about a year ago that Caleb does not have puncta, the tiny holes on the lips of your eyes.  Everyone should have a total of four.  One on top and bottom of each eye.  The bottom puncta do the majority of the draining and the top do about 25%.  Caleb has only one and it is on the top. Puncta help the eye flush bacteria away from the eye, so if you don't have puncta, you can get a lot of eye infection.  His Occularplastic Surgeon, wants to go into the OR and take a look and just make sure that the puncta are not somewhere else in the eye, since his anatomy is a bit different (i.e. the cleft lip and palate). If they are there, that is great they will put stints in to help his eyes drain.  If not, well, that could lead into a whole other surgery that would create a drainage system for Caleb's eyes into his sinuses.  But, we won't know that until she can get a better look in the OR.  So, I am hoping the other docs will be okay with her jumping in the OR for a bit to take a look and that the anesthesiologists think it is safe for him to be under for that amount of time.  I will update when we know more.

Thanks for checking in.

God Bless you all!!

God Bless Caleb and Camryn!!

Hearing Specialist

So we met the Hearing Specialist yesterday and I was really impressed.  He answered all of our questions and then some.  So as of now, there are two options when it comes to implants: the BAHA and the Cochlear.  Dr. Kitsko, believes Caleb may not be a candidate for the BAHA because you have to have one good ear and one bad ear or other exceptions.  Caleb has one bad ear and one semi-severe ear.  So that alone may make him not a candidate for the BAHA.  He is wondering if he may be a better candidate for the Cochlear.  With that being said, Caleb has not had a big workup as far as imaging on his ears.  His immune system took precedent for a long time and this is one of the things that still needs some investigating.  So the plan is to do an MRI and a Catscan to get some better images of Caleb's ears.  It is not uncommon for kids with one of the syndromes Caleb has to have abnormal anatomy of the inner ear.  So if he does, you hope that it doesn't effect the chances of him getting a Cochlear Implant if he is a candidate.   But only the images will tell.  So when they schedule his surgery for his teeth, they are going to try to get these images done while he is under anesthesia.  I am hoping everyone cooperates and we can do this under on GA (general anesthesia). 

Caleb also had bloodwork done yesterday to check his thyroid levels to see how his synthroid is helping his thyroid disease.  Poor guy had two rough sticks, but was a trooper so we took him to Louis Hot Dog for lunch.  He was all smiles once the hot dog came to the table.  He is one tough little boy.

I am still waiting to hear about Caleb's immune studies.   As soon as I hear anything I will let you know. 

God Bless you all!!

God Bless Caleb and Camryn!!

Hearing Specialist

Today Caleb has an appointment with the Hearing Specialist from Children's to start the process to see if Caleb is a candidate to get a hearing implant to help him hear.  As far as I know, there are two types the Cochlear and the Baha.  I do not believe Caleb is a candidate for the Cochlear as he does have 5% hearing in the one ear that he can hear out of and with the Cochlear that would destroy what hearing he has to give him an electronic type of hearing.  So today we meet with Dr. Kitsko and see what he has to say.  I have a feeling he will have a full audiology workup and at least an MRI or Catscan in the future as part of the workup, but at least the ball is rolling and we will start to become more knowledgeable with the implant possibility. 

I will update when I know more.

God Bless you all!!

God Bless Caleb and Camryn!!

Thank you again, from the bottom of my heart

As Keith, the gentleman who threw the steak fry along with his wife Jess, posted a thank you letter in our local paper today I couldn't help be overcome with emotions when thinking about the steak fry. 

I have thought about it every day since it occurred, sometimes many time a day.  I cannot begin to express how much that meant to my family.  When I used to live with Caleb in the hospital I would find most of my day filled with silent prayers.  One of which, would be that he would one day get to meet all of you, all of those that reached out to me and my family when we were scared to death for Caleb and what he was facing.  You didn't forget either, you all stood right by and have for six years.  I..cannot thank you enough.  I was asked to say a few words at the steak fry and I wanted to bring up what I prayed for but when I looked out at all of you, I started to cry and the words just didn't come out.  Thank you all, you have lifted Caleb and my family in prayer for six years and I cannot thank you enough.  You have stood right by us, and have taken every step with us.  Thank you.  You have given us courage and strength and looking at all of you at the steak fry I was soooooo overwhelmed.  Thank you FAMILY, you are FAMILY.  I have to admit, I would love to see you all again, I promise I won't cry..okay maybe not!  Thank you family!  God Bless you all!!  God Bless Team Caleb!!

I want to thank Keith and Jessica Bell for throwing the steak fry.  They barely knew us when  they started planning this, and being the amazing and generous people they are, they did this for us.  I am truly humbled by their generosity.  You two are simply amazing.  Thank you Keith and Jess so so much! 

God Bless you all!!

God Bless Caleb and Camryn!!

NO PACEMAKER

PRAISE THE LORD!  Just got a call from the cardiologist and they don't believe Caleb needs a pacemaker at this time for the heart issues.  Thank you Lord.  They want to see him back in two years BUT they want us to of course keep a close eye on him for any dizziness, color -changing (like if her turns puple) or fainting issues that would point to heart issues.  Thank you Lord.  Thank you all for your prayers!

God Bless you all!!

God Bless Caleb and Camryn!!

Prayers Would Be Appreciated

Hi all, I am asking for prayers. 

I called Caleb's cardiologist yesterday to see if the results were in from his heart monitor he wore for 24 hours.  The preliminary read was back and the nurse read it to me on the phone.  She said 'occasional low amplitude of the P waves and difficult to read'.  She then told me the doctor could have been more detailed in her summary and I agreed.  I asked her if she could have the doctor call me as if there is an issue with him dropping P waves this is something you don't sit on.  The nurse agreed and sent the doctor an email while I was on the phone with her.  She did let me know that the doctor is not in on Friday so if she didn't call me back on Thursday night, chances are that we wouldn't hear anything until Monday.  I almost started crying when I was on the phone with her out of fear and scared about another possible surgery on Caleb's heart and worry for my little boy.  I am asking all of you to please pray that the test, although some waves looked low were strong and his heart is working fine and he doesn't need surgery.  Please pray.  Thank you so much.

God Bless you all!!

God Bless Caleb and Camryn!!

Growth Tests are Back

Hi all!  I hope everyone had a great weekend.

Caleb's growth tests have come back.  They did an xray and hormone tests to check his growth levels because kiddos with one of the syndromes he has do have growth problems.  Caleb's bone age, from his x ray showed an age of 7 and he is 6.  So this bone age looked good.  However, his IgF, growth hormone, was on the low side.  With that being said they do not want to diagnose him yet as having a growth problem.  Caleb is a very picky eater and we have always given him 1% milk.  The doctors want us to try to increase Caleb's caloric intake to see if he can gain weight.  If he can, no growth deficiency.  If not, then he may need the daily hormone injections to help him grow.  So we have changed his milk intake from 1% to vitamin D milk and if need be will start supplementing with Ensure or Carnation, but we just don't want the Ensure or Carnation to take away his hunger.  So we will watch his weight closely and see how it goes. 

The immune and heart tests are still pending.

God Bless you all!!

God Bless Caleb and Camryn!!

Cross One Doctor Off the List

Well, Caleb's urine tests came back fine, so Nephrology has discharged Caleb from their care.  That is one doctor on the list of many that he won't have to see, unless something should arise. 

I took Caleb's heart monitor off when I got home from work yesterday and packed it up to send it back to Children's.  I said a prayer over the package praying for no dropped p waves and for a normal result.  We should know something in about two weeks.

I received an email from Duke that they received his blood and have started tests on it.  Hopefully, we will hear from them in about two weeks, as well, and praying it is good news.

I will call Children's later today to see if the xray or growth bloodwork are back yet and also to schedule Caleb's next surgery.  He has to get his teeth cleaned and capped.  He had such bad reflux when he was a baby from all the medical issues that it destroyed his teeth and he has also ground them down by grinding his teeth a lot.  They will also be putting in a set of tubes during this surgery as well.

I will update more as I find out more. 

Have a great day!!

God Bless you all!!

God Bless Caleb and Camryn!!

The rest of the updates

So after Endocrinology we headed to Cardiology for Caleb to have an EKG and an Echo.  Not only were they checking on his repairs form his open heart, they also were checking on an area of concern that was noted during his last admission.  The heart wave made of P, Q, R, S, and T waves.  The QT wave during Caleb's last admission looked somewhat long and when this happens that can put you at risk for certain arrhythmias.  However, the Echo showed that the QT wave was not long and was probably long during his last admission, when he was in for his shunt, because of the high inter cranial pressure.  The heart was reacting to the high pressure.  So this was good.  The cardiologist also said the repairs to Caleb's heart look great.  During his last admission, they also noted Caleb was also dropping (the wave wasn't always present) his P wave.  We said he did this at Duke when he was there in the ICU.  Therefore, Cardiology decided to send him home on a heart monitor to check and see if he dropped any waves for the next 24 hrs.  The heart monitor stays on until about 4 today, so he get another day off from school.  When I get home from work, I will take the monitor off and then mail it back to Children's and we should have results in two weeks.  If all looks good, Caleb could officially be discharged from Cardiology's care!  Prayers the P waves behave themselves.

Nephrology:  Caleb had to see Nephrology as the kidneys can take a beating after all the meds, abnormal electrolyte levels, and IV nutrition.  However, pending a urine specimen, if all looks good Caleb could be discharged from their care as well.

Opthamology:  Since Caleb is a bit older and a bit more communicative, they did some other tests on his eyes yesterday.  Good news his brain and eyes work together.  Awesome news!  He does have depth perception as well too, which is awesome.  Caleb's astigmatism is worse in his left eye, which means another new script.  They have been changing a lot, but that is to be expected with growth.  We are supposed to continue to patch his eye.  If by age 9 or 10 his lazy eye is the same or worse, they will consider surgery to correct it. 

While we were at Children's, Duke called me to tell me they received the consent for all the immune bloodwork and we were good to go to the lab to get it drawn, so Children's could UPS it.  So the labs were drawn.  Hopefully, we should know a bit more about his immune tests in the next two weeks. 

That is where we are for now.  When results continue to come in, I will update. 

Thanks for checking in.

God Bless you all!!

God Bless Caleb and Camryn!!

Endocrinology

The Endocrinology appointment is over. Caleb has been diagnosed with Thyroid disease, Hoshimoto's Thyroiditis. He has been put on a pill to supplement hormones for this. They will also be doing more bloodwork and an X-ray today to see if the CHARGE syndrome has effected his growth. If it has, he would have to get daily injections. We are now waiting for his heart Echo.

God Bless you all!!

God Bless Caleb and Camryn!!

Steak Fry

The steak fry went so well Friday. It was a huge success. Thank you so much Keith for your hard work and making this such a huge success. Thank you to all the people who donated for the various prizes and to all of our family and friends that were there to show support. We cannot thank you enough.
Tomorrow Caleb has more clinic appointments. He will see Endocrine, cardiology, nephrology, and ophthalmology. Cardiology will be looking at one issue that was noted regarding his heart during his last admission. Hopefully, it's nothing. Please pray these are uneventful visits.

God Bless you all!!

God Bless Caleb and Camryn!!

One Week From Today

In one week from today, the steak fry our neighbors are throwing Caleb will occur.  I cannot thank Keith and Jess for throwing countless others for their hard work and contributions.  I have always said we have been blessed by our friends the past 6 years.  We cannot thank you all enough.  Have a safe and fun weeekend.  Go Mountaineers!

God Bless you all!!

God Bless Caleb and Camryn!!

Happy 5 Year Thymus Transplant Anniversary Caleb!!

I can't believe it has been five years.  Here is my post from five years ago. 

Caleb Paul Hlebiczki: Surgery is Started: Well, Caleb went into surgery earlier than planned. The first case cancelled so Caleb went in at 8:45 and they are planning on a two hour s...


Happy Transplant Anniversary Caleb!!  Keep fighting lil' man.  You are doing awesome.

God Bless you all!!

God Bless Caleb and Camryn!!

Labs

Well the labs from clinic yesterday are already coming back. Good news, no allergies. Not so good new, Caleb's thyroid is really acting up. His thyroid levels are so high his immunology doctor at Children's called me tonight and told me she called Endocrine to tell then he needs to be seen ASAP So we are waiting for Endocrine to call and we will go from there. She said he definitely has Hoshimotos and needs medicine before he starts getting side effects from it.
We are still waiting for his immune bloodwork to come back. I will update when I know more.

God Bless you all!!

God Bless Caleb and Camryn!!

Clinic update 2

Caleb, due to his immune suppression, was not able to have an allergic response to things in his environment. However, we have wondered if he has sinus/allergy and asthma issues due to some things we have noticed. He may have some allergy testing done today. Waiting to c doc.
No scratch test will be done. They will be doing bloodwork to check for allergies.
God Bless you all!!

God Bless Caleb and Camryn!!

Clinic update 1

Update: kinda bummed the hearing specialist was not notified we wanted to talk about the BAHA implant. So, we have to now schedule another appt on top of the day of clinic appointments two weeks from today. Already coordinating docs for his next surgery. So far these docs include dentist for teeth cleaning, cavities (from reflux), caps ( due to him grinding his teeth down), ENT (for tubes), possible brain stem hearing test, and MRI. We will see if any more docs from today or in two weeks will be added on to the surgery. More updates to come. On a lunch break now.

God Bless you all!!

God Bless Caleb and Camryn!!

Clinic Day

Long clinic day tomorrow at Children's hospital for Caleb. One of the appointments, we will see if Caleb could be a candidate for a BAHA implant to help him with his hearing. He has already been denied for cochlear implants. Very hard to be a candidate for these hearing devices, a lot of guidelines. More updates when I can.
God Bless you all!!

God Bless Caleb and Camryn!!

Seeing Some Progress

Hi all, just a quick little update.  In the past few weeks since Caleb has started school we have really seen some progress, which is very exciting as Caleb used to hold back in the school setting.  However, he seems to have really taken to his new teacher and per the school work they are sending home, he is doing some work on his own and is even become a pro at writing his own name.   Wow, my little boy can write his name..

I think I will leave it at that :)

Have a great day everyone!

God Bless you all!!

God Bless Caleb and Camryn!!

Where has the Time Gone

I can't believe in just a few days my little boy will be six years old.  He is such an amazing little boy.  As most of you know, I have recently gone back to work and i think I may take Thursday off to spend with my little man.  He deserves it!  We also went to the beach recently.  Caleb did great!  I will be posting pics soon!

God Bless you all!!

God Bless Caleb and Camryn!!

Steak Fry Facebook Page

Hi Friends!

If you are on Facebook, a page has been set up to update everyone on the steak fry as details emerge!

Please visit, https://www.facebook.com/#!/groups/129879890482750/!

God Bless you all!!

God Bless Caleb and Camryn!!

What Sippy Cup

So over the past few months we have been offering Caleb a regular cup to see if we can get him to drink from a cup rather than a sippy.   After several months of just trying to get him to hold the cup and put it to his lips he did it on Sunday and didn't look back!  He picked up the cup and started to drink from it, like he had been doing it forever.  The best part is, is how proud of himself he is when he does it.  He drinks, then gets up to come over to signal to you for some high fives.  He is so amazing!  Way to go Caleb!  You are awesome!

God Bless you all!!

God Bless Caleb and Camryn!!

Hi All!

Hi all!   Sorry for the delay in posts.  I have started a new job and with that came a new schedule, that we all are getting used to!  I do have a lot of updates.  So I will update this weekend.  I hope this finds you all well.  I hope everyone has a great weekend.

Stop back and check for the new post!

God Bless you all!!

God Bless Caleb and Camryn!! 

A Fish

I just had to post this picture and share. Caleb drew this yesterday and said 'fish'! Bri and I were so proud of him. Not only did he draw but he REALLY drew something. Another big step!
Way to go Caleb!
God Bless you all!!

God Bless Caleb and Camryn!!

He Melts my Heart

So I guess I should first start of by saying that I will be re-entering the working world by the end of this month.  I need to go back to work to help pay the mound of medical bills that we have.  It is not ideally what I want to do, but it is what I have to do for my family.  I hope Caleb does well with this change.  I have not been getting a lot of sleep as I stay up worrying that this is going to effect him negatively.  I hope and pray that me going back to work will not be hard for him or Camryn.
As I am prepping myself to return to work, I am getting very emotional about things that I will miss while at work.  One of which, is taking Caleb to the bus stop every day.  Today, I took him to the bus stop early, since it was so nice out.  He, Camryn, and I played while we waited at the bus stop.   They are such good kids.  Every day after Caleb gets on the bus, Camryn and I stand and wave to him, blow kisses, and sign 'I love you' while the aid buckles him in.  Caleb had another great moment today as when I waved, he waved back.  I just wanted to start bawling.  He makes me so so proud!  That little boy has more fight in him than ANYONE I have ever met.  He is simply amazing.  Yes, he has delays, but heck, who wouldn't after all he has been through. I am so proud of what obstacles he has overcome and I know many are ahead.  I will help you buddy overcome them.  Even though mommy has to work, I will continue to help!  I love you and am so very proud of you.  Thank you for the wave today, it was like you knew I needed that!  I love you, your sister, and daddy with all my heart!

God Bless you all!!

God Bless Caleb and Camryn!!

Another Great Moment

There are days when things I taught Caleb days or even months ago, just start snapping in that little mind of his.  Today, he picked up the magna doodle and began to draw circles, then looked at me and signed and said 'caterpillar'.  It was exactly how I have showed him, starting many months ago, to draw a caterpillar.  I calmly (as if you get excited he will get upset and stop-sensory thing) said 'yes caterpillar' and was screaming inside.  He smiled so big.  I then said 'where are the caterpillar's eyes?' He then drew them and did the same for the caterpillars mouth and nose when asked.  I was so happy!  ahhhhh.  What a moment.  I am still smiling.  So proud of him.

God Bless you all!!

God Bless Caleb and Camryn!!

Trying a Cup

This past weekend I tried to start teaching Caleb how to drink from a cup. It didn't go really well. BUT this morning he grabbed my hand and took me to the kitchen and pointed to a cupboard. I opened it up and he pointed to a cup. Then he said 'milk'. I put milk in the cup and we have been working on him drinking from a cup. He seems excited about it, but it seems to be a bit difficult for him! I hope he can grasp the concept! Way to go little man.

God Bless you all!!

God Bless Caleb and Camryn!!

Ahhh Music to My Ears

Hi all, I just wanted to post something great that just happened.  So Caleb does know a lot of signs and words. One of which is momma.   But whenever he wants me he always says 'hi', even if I am not looking, to get my attention.  Just five minutes ago, I was working on some of my stuff for 31 on the computer and I  heard him yelling 'momma, momma' from the other room.  I looked in the room and he was saying momma and signing it, and he wanted me!  He has never done this!  I was so happy that he understands this is the way to get my attention.  I hope he continues to do so!  It was so great to hear my little boy yell for his momma.  WAY TO GO CALEB!!

God Bless you all!!

God Bless Caleb and Camryn!!

SSI meeting

I really can't give the summary of the meeting right now. It went as we thought it would. Pretty much they made a mistake, it's evident-to them and us, but we need physical proof of us dropping of paystubs, that they lost, which we don't have like a receipt or anything. So. That's it.
This is probably the most frustrated and upset I have been in awhile. I'll write more later. Just don't want to rehash it, as I get upset and mad. I really think, and I know I say this a lot lately, but we just need to catch a break. Seriously.

God Bless you all!!

God Bless Caleb and Camryn!!

PLEASE Any Help Would Be Great PLEASE

HI all,
So the SSI overpayment saga continues.  We recently received a letter from the SSI office in response to a inquiry placed on our behalf.  SSI's letter was full of untruths and I can't believe how much they have lied.  It is pretty much a letter than does not have one ounce of truth in it.  I am sick to my stomach about it.  They aren't even aware as to where our case stands, i.e. how many appeals we have filed.  They want me and Brian to come in on Friday for what I feel will be a CYA session for them.  I am really sick of being screwed with by this office.  If ANYONE out there knows of an attorney that can be by our side at this meeting we would greatly appreciate any help!  PLEASE!  We are being asked to pay back A LOT of money that is not our error!  Again, PLEASE, we would appreciate any help.  It makes me sad that I am begging for help but I feel like Brian and I can't help our case as much as maybe someone who knows the law and who can see how this has been so mishandled!

God Bless you all!!

God Bless Caleb and Camryn!!

Thank You Friends

I just wanted to again, extend a thank you to you all for your continued support to our family!

Thank you for your support to the Caleb Hlebiczki Medical Fund and to my Thirty-One Business.  You all have been so great to us and continue to do so.  I thank you from the bottom of my heart.  I am overcome with emotion and the support system you all have provided our family.  Thank you all!  You all have carried us through some tough times.

God Bless you all!!

God Bless Caleb and Camryn!!

Kiwanis Award Winner

Caleb was nominated by his teacher, Ms. Doris, and school for the Kiwanis Award.  This award is for special needs kiddos and recognizing their accomplishments and improvements.  He is loved by everyone at his school and it was so sweet to hear they had nominated him.  The ceremony was today and they read the letter his teacher wrote for the nomination at the ceremony.  I fought back the tears, it was beautiful!

Caleb did well throughout the ceremony until everyone clapped.  Thank goodness he was the first kiddo, because after everyone clapped for him he cried (one of his sensory aversions that we think dates back to when the IV team would finally get an IV we would all cheer) and he was scared to go back to the area where they had the ceremony.  He didn't want to take part in the group picture either for the paper :( but he did great.  We are so very proud of him.  He is one amazing kid!  He has taught me so so much.  We love you Caleb and are so proud of you!

Right before the ceremony started!  How cute is he?!?!

 Sorry about the hand in the picture. Oops!

 He still wasn't sure what was going on!  Awesome ceremony!


God Bless you all!!

God Bless Caleb and Camryn!!