Happy Anniversary (Caleb Paul Hlebiczki: Surgery is Started)

I remember this day well.  One of Caleb's 40-some surgeries.  This surgery, like many of his others, gave him a chance of life.   But this one, would help him build an immune system.  If kids who are born with one of the two syndromes Caleb has don't get this transplant before 2 years old, they have no chance of survival.  He had a tough road and we almost lost him a couple times, but he fought.  He knew he needed this transplant.  We will celebrate Caleb's Thymus Transplant Anniversary today.  Happy Anniversary Caleb. We love you so much, and couldn't be more proud. 
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...

God Bless you all!!

God Bless Caleb and Camryn!!

Happy Birthday sweet boy. You are such an inspiration to me and have taught me to become a better person.  I have never seen anyone fight as hard as you and smile as much as you do.  You are such a loving and caring kid. I love you so much and wish you a wonderful birthday and many more to come.  I am so proud to be you mommy.  Have a great day.

God Bless you all!!

God Bless Caleb and Camryn!!

Clinic Appointment Update

Hi all,
Sorry for the delay with the update.  I have been dealing with some medical issues of my own. 


So as far as the clinic updates here we go  :)

The first doctor we saw was Opthamology.  His eyes have not gotten any worse and neither has his lazy eye, which is awesome news.  Also, we were concerned that Caleb has dry eye after they opened up his puncta in surgery on New Year's Eve because he was blinking more and rubbing his eyes.  Well., she did a test and his eyes are not dry.  Thank goodness, I was scared that opening up his puncta had backfired but that wasn't the case..phew.  She told us to get over the counter drops for allergies to see if that helps him.  Follow up in 6 months.

Next stop was Endocrinology.  Caleb's thyroid levels look great, but the docs were a bit concerned that Caleb has not grown much height wise and has gained no weight.  They want us to really increase his caloric intake and they also perscribed a med to make him more hungry.  We aren't fans of the med and are really trying to watch him and how much he eats.  If his eating drops off, then we will start the med, but right now we are adding carnation instant breakfast to his milk and really trying to get him to eat more and better on his own.  If he doesn't gain weight the docs may once again check his growth hormone next visit, in six months, to see if Caleb needs growth hormone injection.  Brian and I aren't fans of the growth hormone and we really oppose the use of it.  Right now, we are just really hoping Caleb puts on some weight in the next couple of months.

Last stop was Allergy and Immunology and I don't mean to sound like a pessimist.  But for some reason our appointment with them the last few times was with a new fellow and Caleb's immune issues are way over her head.  She was suggesting treatment that we KNOW are not applicable to Caleb.  I will be calling the head of the department to suggest Caleb be seen by him again since he is knowledgeable with Caleb's immune issues.

Well that is it for now.  I will keep you all posted.  OH WAIT..have to say some big news for Caleb.

CALEB CAN READ!!  We were working on some words with Caleb sent home from his teacher and he was a bit bored at how I was reviewing his vocabulary with him.  So I asked him to find the words in the list, to test him to see if he can read AND MY BOY CAN READ!  He found every work we asked him and Brian and I were ecstatic.  So ecstatic.  He also said two full sentences to us lastnight.  He recited two sentences from 'no more monkeys jumping on the bed'  we were so happy.  His teachers and school are great with him.  We are so happy with his progress this year. 

Well for real, that is it for now, thanks for checking in!

God Bless you all!!

God Bless Caleb and Camryn!!

Full Day

Caleb has a full day of appointments at Children's tomorrow. I will update when we get home.

God Bless you all!!

God Bless Caleb and Camryn!!

Potty Training

Caleb is doing so well with the potty training.  He only has only had a few accidents.  He is doing so well at home and at school (no accidents last week at school).  He has such an amazing teacher who really has done so well with Caleb.  We have seen a lot of improvements. 
Unfortunately, Caleb seems to be fighting something.  He has been tired all weekend and just seems off.  Hoping whatever it is, passes quickly. 

Thanks for checking in!

God Bless you all!!

God Bless Caleb and Camryn!!

WOW

Caleb continues to do really well potty training.  He actually held it during the night and got on the potty first thing this morning. So proud of him.  This is a huge step for him.  I know there will be accidents, but I am so proud and happy for him.  He is also very proud of himself when he goes :)  I just wanted to give a quick update.  I will do more like this.  Small quick updates to keep everyone up to speed!

Thanks for checking in!

God Bless you all!!

God Bless Caleb and Camryn!!

Time to brag

So we have been working on potty training with Caleb and he is doing really well the last two days. He has now gotten to the point where he lets us know when he has to go. Yesterday, he only had one accident. We are so proud of him and hope he continues to do so well.

Thanks for checking in.

God Bless you all!!

God Bless Caleb and Camryn!!

Another tummy bug

Well, another tummy bug has managed to go through our house.  This would be number three for this winter.   Yuck.  We cannot wait for spring to come.  
I have officially terminated my Facebook account, which in turn does not allow me to update Caleb's page.  So all updates will be here.  This is where I started the updates, and want to return to this page as this page can be saved for Caleb to read about his progress later in life. 
I, however, have been wanting to make this page as well as Caleb's sister's page more private.   So if anyone out there knows anyone who writes code.  I need help to make a password for the blogs.  
Well, please stop back and feel free to leave comments, as those will be saved over time as well. 
Thanks all four checking in.  Stay healthy.   Be kind to one another. 
God Bless you all!!
God Bless Caleb and Camryn!!

HI all

Just wanted to give a quick update on Caleb's lungs.  He has finished his antibiotics and sounds pretty good.  I am thankful that the docs gave him meds to prevent a pneumonia from forming in his lungs.  I love that most the docs around her can tell we know what Caleb needs and are so helpful and listen to our concerns, when they see him.

We are in the process of getting the FM system approved for Caleb's teacher to use in the classroom.  Hoping to get approval from the school system in the near future.

Caleb's sister, Camryn, had a tummy bug over the weekend.  She has already shared this bug with her grandma.  I am really hoping Caleb can skip this bug as it would be very hard for him to deal with with his Nissan Wrap.  A nissan wrap is when they wrap the top of your stomach to prevent reflux.  It helped the reflux but it does not allow him to vomit if he is sick.  So a GI bug is even harder on him. 

Caleb got out his magnadoodle lastnight and started drawing lettera and had me guess what letters he was writing.  So awesome to see him do this.  He can be shy at times, even with me or Brian, and sometimes getting him to a task as easy as this is not so easily done for him.  I was so proud of him, as always.

Well, I have to get to work.  Thanks all for checking in.  Please feel free to leave a comment. 

God Bless you all!!

God Bless Caleb and Camryn!!

Happy Valentine's Day

Well, Caleb's cough sounds better, so hopefully the meds are doing their job and keeping the pneumonia away!  Fingers crossed.

Just wanted to wish Team Caleb a Happy Valentine's Day. I remember the day when Caleb first said 'I love you'.  It took awhile, but he finally said it.  He now even signs it.   Here is his cute little hand signing it. 

God Bless you all!!

God Bless Caleb and Camryn!!

Phew

So, we did have a relaxing weekend, which was very nice.

Sunday night we were all having a snack before bed, popcorn. Everything was going fine, when Caleb started to choke. This is probably the fifth choking episode with the kids, but the worst so far. It was evident Caleb wasn’t moving air and I was looking at Caleb’s face and it was getting purple by the second. At that time Bri was behind Caleb and I said, ‘do it’. Brian performed the Heimlich and Caleb was moving air again, but coughed hard for the next couple minutes. Brian did awesome. We all finally calmed down enough to get to bed for the evening.

Yesterday, when I picked Caleb up from school, I notice Caleb’s cough from his cold seemed worse and sounded different from anything I had ever heard him do. He kept doing it off and on and after dinner lastnight, he started coughing again and he then coughed up a popcorn kernel. Pretty evident this kernel was in his lungs, from aspirating when choking. Brian and I then discussed it and though Caleb needed an x-ray. Caleb had aspirational pneumonia before, at Duke, and that is when he was really sick and was on the ventilator (oscillator) for a very long time and we almost lost him. I know his immune system was more compromised then, but still aspirating is something you don’t want to mess with. So Brian took Caleb to MedExpress where they did and xray to check for pneumonia. His lungs look clear, BUT, the doctors want to treat him with antibiotics (shot and oral) to prevent him from getting pneumonia. As we know, once it starts, it is hard to get a hold of. So Caleb got a shot lastnight (which he pointed to his bum when he got home to show me :)), breathing treatments, and he got oral antibiotics. He has to go back in a couple days for another x-ray to make sure no pneumonia is present.

I am glad he got checked and has meds on board to hopefully prevent a pneumonia from forming.

Thanks for checking in.

God Bless you all!!

God Bless Caleb and Camryn!!

Hearing Test

Yesterday was a little tough. So Caleb had a hearing test done, the first real hearing test, the rest have been done under anesthesia.  Unfortunately, Brian couldn't go because it is hard financially for both of us to take every clinic day off.  Caleb was scared to death. He didn’t understand and pretty much cried through the whole thing. The first try did not work as Caleb could not calm down long enough to even get the test started. Once he did calm down we tried another approach to try to get results, he still was pretty scared and upset. My mom even was asked to come in the room to try to help calm him down and distract him, so I could hold him. He calmed down enough to do a test. It was sad to see him with headphones on and I could hear the noises, and he didn’t respond at all. Over the years, I have done my fair share of many silent prayers. I sat there praying that all those hearing tests done under anesthesia weren’t accurate and this would show he could at least hear more in that right ear. I also prayed he could hear just a bit with that left ear, while I knew that he had no anatomy to even transmit sound-I guess a pretty silly prayer. But I prayed. Prayer doesn’t always work out as you hope, but it is just because it is not God’s will for things to work that way. But that doesn’t mean that I won’t pray. The hearing test concluded and the audiologist sat us down and said pretty much what we already knew as far as what Caleb could hear. He is completely deaf in the left ear and has a moderate to severe loss in his right. She tested to see if a baha would help him and she thinks it would do no more than the aid. When she said this, I don’t know why, but I got a lump in my throat and fought tears. It’s like you already know something but you were hoping for a miracle and to hear it again, just hurts. But I held it in and managed to maintain my composure for a bit. So the audiologist took my mom, Caleb, and myself to a waiting room while she went and filled in the hearing specialist on the results. She came back and started walking us down the hall to go meet with the specialist. We, once again, started talking about the hearing test and the results and I couldn’t keep it together. I just started crying. I just told her I wished there was more we could do for him to help him hear. My wonderful mom was there for me, as always, and I was holding my little man’s hand, crying. I just look at him and want nothing but the best, like any parent. Then I do the typical ‘he has so much more to contend with than the average child, he deserves a break’. As we were waiting for the doctor another mom who was there with her child, I think to see an ENT for tubes, just walked up to me and hugged me saying ‘ you look like you could use a hug’. I just cried saying ‘I hate clinic days’. I am sure she didn’t get it, as she didn’t look to be a children’s frequent flyer, and I am glad she doesn’t. But what a great hug. Thank you to her, I need that hug. What an awesome person to just walk up to a stranger who you know is upset and give them a hug.


Then we saw the doctor, he walked in right away and kind of frowned and said ‘no baha’. I said ‘I know’. He said ‘I know it’s tough, but at least we know’. He just explained that there would be no benefit to the baha for Caleb and he would try it if he thought it could provide any benefit. He then went on again to discuss those images that I have discussed before that they did during his last surgery. He said it is by far the most abnormal images, in regards to the ears, he has ever seen. He said that each ear is made of three inner canals, with some fluid in them. These canals, and the fluid, are your body’s balance system. Caleb does not have any of those canals in EITHER of his ears. The doctor said, in one ear, he saw a tiny bit of fluid, which is probably Caleb’s version of this balance system. So this explains the balance issues. He also reiterated that Caleb does not have a hearing nerve in the left ear and the hearing nerve in the right ear is small. So essentially, Caleb has does not have any anatomy in the left ear and what he has in his right is not complete. So, I asked him, what can we do to help him hear. I asked him about the FM system in his classroom and he said emphatically ‘yes’. Get that installed no matter the classroom size. The FM system is where his teacher will wear a microphone that transmits to Caleb’s hearing aid. This will hopefully help him ‘miss’ less than what is going on in the classroom. I have already called his awesome teacher and she is already getting the ball rolling on this. We are blessed for him to have such an amazing teacher. He also said it would be awesome to get an FM system in the home, with the caveat that insurance does not cover it and it is expensive. But he says a couple of his patients do have it and have benefited from it greatly. I will be looking into that and see if we can make it work. He said to continue to do ‘gate training’ to help with the balance issues. I have already talked to his therapists and they are already putting together a plan.

Caleb goes back in 6 months for another hearing test; I have asked his teachers and will ask his hearing aid audiologist, here in Wheeling, if we can start doing things similar to what they do in the tests to help him not be so scared of the tests. Hopefully, this will help him not get as upset as yesterday.

So that’s where we are. Poor Caleb had a rough day yesterday and now is sick with a nasty cold that Camryn and I had. I am hoping for a relaxing weekend with my awesome family.

Thank you all for stopping by.

God Bless you all!!

God Bless Caleb and Camryn!!

Clinic Day

Tomorrow is another clinic day for Caleb.  Tomorrow, he will see Audiology first to get a hearing test.  This is the follow up hearing test to the imaging done during his last surgery.  Then, after that, we will see the hearing specialist to discuss the hearing test in correlation with the images.  We already know the results of the images, but are really hoping, that by some miracle they let us try the trial BAHA, a soft band baha, to see if that could help Caleb hear in anyway.  We know from his imaging that Caleb's ear anatomy is VERY abnormal.  To quote the doctor 'the most abnormal he has ever seen'.  However, I do know from another wonderful CHARGE mommy that she was told her daughter would not benefit from the BAHA but definitely has.  I just want him to try the soft band BAHA (this is a trial BAHA a real BAHA is implanted behind the ear in surgery).  I just think, what can it hurt to try.  I know Caleb will not tolerate the band being put on him in the office, yet I am hoping they 1. try it and 2. let us go home with it as I know he will respond better to trying it in his own environment.  So, we would appreciate the prayers for as good of a hearing test that he can get and them allowing him to try the soft band BAHA. I will update the blog tomorrow.  Thanks all!

God Bless you all!!

God Bless Caleb and Camryn!!

Wear Red

Even though today is Wear Red for Women"s Heart Day, I am wearing red for my son, Caleb. He was born with two holes in his heart and an extra atrium. What was supposed to be a planned heart surgery turned into an emergency heart surgery while we were at Duke waiting for his Thymus Transplant, because he started to go into heart failure. So yes, I honor all the women out there, but I honor my son who has fought a very hard battle and continues to do so. I am very proud of you Caleb. I love you!

God Bless you all!!

God Bless Caleb and Camryn!!

Thyroid levels

Caleb's thyroid levels look great. We have found the correct dose for his meds. Woohoo.

God Bless you all!!

God Bless Caleb and Camryn!!

Yep. He's amazing.

So after bath time Caleb, Camryn, and I went into Caleb's room to wait for daddy to get ready for dinner. While we were waiting we got out the glow color board. Caleb drew a circle so I yelled 'circle'. Then it happened. He started writing a whole bunch of letters waiting for me to guess what letter. It was awesome. He wrote so many letters. I'm so proud of him. It was absolutely amazing.

God Bless you all!!

God Bless Caleb and Camryn!!

Audiology

We are still waiting to hear back from Children's on Caleb's hearing test, hearing specialist, and endocrine appointment.  We also have not heard back in regards to Caleb's endocrine/thyroid labs.  However, Caleb does have an appointment with his Wheeling audilogist (as he has a group in Pittsburgh at Children's too) to get his hearing aid look at.  He has been pushing on his hearing aid and we have ruled out fluid and now that the tubes are in we aren't sure what is going on.  We have noticed that his hearing aid goes through batteries a lot quicker than it used to so we aren't sure what is up. 

Thanks for the prayers for my mom, her surgery went well.  Our friend Gary is going to continue to need lots of prayers, as well as his family.  Thank you. 

God Bless you all!!

God Bless Caleb and Camryn!!

Ouch

Well, Caleb had his blood drawn yesterday.  It was one stick, with A LOT of maneuvering.  OUCH!   He got upset, but was a trooper.  He did great.  Now we wait for the results.

Also, a couple prayers requests.  Our friend Gary was a in a very bad car accident and could really use a lot of prayers as well as his family.  Also, please keep my mom in your prayers as she is having surgery today.

God Bless you all!!

God Bless Caleb and Camryn!!

Blood Draw

Blood draw today for Caleb to check on his thyroid levels. Please pray for one stick.

God Bless you all!!

God Bless Caleb & Camryn!!

He is awesome

We had a fun weekend with family which took our minds of things.  Thanks Mom, Dad, Ben, as and Stacy for being awesome.  We continued to get messages from all of our friends too.  Thank you.  

Just a quick little update.  Camryn was trying to catch a stuffed angry bird tonight so we were passing it back and forth with her.  Then Caleb got up and didn't catch it on the first try but then I counted to three, then threw it, and HE CAUGHT IT.  Not once, but twice.   Great hand eye coordination and a big fete for him.  Way to go Caybay!

God Bless you all!!

God Bless Caleb & Camryn!!

Thank You..Again

Hi all, I just wanted to say thank you..again.  Yesterday and still today have been emotional for me, I find myself tearing up still on occasion.  Which is fine, I have to process it all and then come out swinging, like a friend told me.  I think I cry because I feel so bad for him, that it is another thing that he has to overcome, which he will.  Come hell or high water, Brian, Camryn, and I will help Caleb through this.  We have a wonderful support system of family and friends.  But once again, I consider all of our friends, family.  You all are truly amazing.  I got texts, messages on facebook, etc from you all showing your support.  A couple months back someone made a rude comment to me questioning the genuine friendships of our support system and I got so upset.  I look back now and realize that that individual was just jealous.  How could you not be.  Brian, Caleb, Camryn, and I are surrounded by a huge army, Team Caleb.  I cannot thank you all enough. 

God Bless you all!!

God Bless Caleb and Camryn!!

Surgery and Results

Hello all.   So Caleb had his surgery on New Year's Eve.  His teeth were capped and cleaned and thankfully none needed pulled, however a lot were capped due to him being tube fed when he was really sick.  They also put new tubes in his ears, which removed A LOT of fluid behind the ear drum.  They also, at the last minute, were able to check the puncta in his eyes.  Great news, all puncta were there and complete (meaning they drained through and to his sinuses.  Three needed to be opened and then irrigated and that caused some pretty good bruising and a black eye.  Finally, they did the CT and MRI imaging to check and see if he was a candidate for any hearing implants.

We got the results from the images today.  Some I expected.  Some made me break down into tears.  The doctor started off the conversation saying this is probably the most abnormal CT/MRI he has seen with regards to ears and the anatomy.  That made my heart sink.  He did say that Caleb's left ear is deaf, which I expected, but then it just got upsetting for me.  He explained their are two nerves in the ears that he made note of 1. the hearing nerve and 2. the balance nerve.  Caleb does not have the hearing nerve in his left ear, hence the inability to hear and an aid would not help at all.  Caleb has the hearing nerve in his right ear, but it is small, hence the significant hearing loss in his right ear.  This can be helped with his hearing aid, but we still aren't sure as to what level.  Caleb will be getting a hearing test done in the near future to see what this level is.  Dr. Kitsko then went on to discuss the balance nerve (responsible for your overall balance of your body), or should I say lack there of  :(.  He said Caleb does not have a balance nerve in his left ear at all and if he does have one in his right ear it was so small he couldn't see it.  (chocking up again as I type this).  So that explains why Caleb has the balance issues he does.  His pediatrician had mentioned this in the past, but I always held out hope that his balance problems were due to his delays.  I just feel sick.  I asked him so know what?  Does this mean Caleb will never be able to walk well?  He said he couldn't answer that.  I then asked, What can I do to help him?  He said maybe some physical therapy that focuses on some gait training may help, but he can't guarantee.  .  I started to cry when I was talking to him and then regained my composure to ask him.. so what next.  He said he definitely wanted Caleb to get a hearing test to see as to what level Caleb can hear in his 'good' ear.  Then I asked him if Caleb was even a candidate for an implant after this.  He said he thinks cochlear is not an option.  He said maybe the baha could be a possibility for the left ear but that will depend upon what the audiologist sees with the hearing test.  So plan is to get a hearing test and then see Dr. Kitsko after the test to discuss the hearing test results and if Caleb is a candidate to at least do a trail for the BAHA implant.  As far as the balance, I just am in a whirlwind of emotions right now.   Trying to process it and not get upset at work, but I am. 

I will post more updates when I have them. 

God Bless you all!!

God Bless Caleb and Camryn!!