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


Friday, May 14, 2010

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!!

Thursday, May 13, 2010

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!!

Wednesday, May 12, 2010

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!!

Tuesday, May 11, 2010

Movin' and a Groovin'

So I have some exciting video to post of Caleb. But before I do, a couple quick updates.
Caleb has started going to the new place for therapy and we love it. The therapists are great! So knowledgeable. Caleb is still adjusting but I know he will get used to it.
We are still trying to let Caleb's hole from his g-tube heal on its own. It is smaller and still leaking, so we are praying it will continue to get small so he won't have to have surgery as it is a pretty extensive surgery.
Also, we have been weaning Caleb off of his Calcium and Vitamin D meds that he has been on since birth to control his Hypoparathyroid. His calcium levels at birth were very low and he almost had a life threatening seizure due to the low levels. However, some kiddos with DiGeorge will outgrow the need for oral meds and may be able to maintain the levels with their diet. So this is what we are trying. He has had numerous blood draws, to check his levels periodically through the wean and he is now off the meds. We have one more blood draw (to see if the levels are staying within the normal range) and if that comes back normal, then Caleb will be on only 2 meds, a vitamin andprevacid, a day. Hard to believe that the med list is so short now. He came home on so many meds. The picture below is the amount of meds that Caleb initially came home on (not all are pictured as some were refrigerated meds). So you can understand how impressed we are that he could possibly be down to two meds a day.

Caleb unfortunately has another cold. He had a fever lastnight and we are hoping this bug doesn't get him down and that his immune system fights it off. Go IMMUNE SYSTEM!

Caleb now understands that he is going to be a big brother, but I don't think he is completely thrilled about the idea. He does point to my belly and say 'baby' but then shortly thereafter says 'bye bye baby' and covers my belly. I know it will take some time for him to adjust and I know he will be an AWESOME big brother. Baby girl, is doing great. She is a wild child, moving around often. We are starting to get the nursery ready, so exciting. We are trying to keep Caleb as involved in the process too to help him adjust to the upcoming arrival of his sister!

Well as promised here is the amazing video. He literally did both of these within 48 hours of one another and out of nowhere. Just like always, when Caleb makes up his mind to do something he is gonna do it!

video

video

Aren't those awesome!

Also, on a side note...I am thinking about making Caleb's blog more private. So not just anyone out there on the world wide web can log on to his blog. If I do, it will probably be controlled by password or by email. Either way, I will let you all know before I do anything, so you can access the blog!

Thank you all for checking in!

God Bless you all!!

God Bless Caleb!!