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!!