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!!

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!

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!!

Another Post Op Update

Hi everyone! Caleb seems to be doing better! That first night after surgery was definitely rough. Poor guy! We have found out that sometimes if you have two types of anesthesia, like he did, it can make you sick. He definitely had a hard time recovering.

His g-tube site is still trying to heal. I wish that hole would close on it's own. The last thing all of us wants is ANOTHER surgery. So please keep praying that it heals on its own.

Great news, Caleb has started to hold his sippy cup and take drinks! We have been working on this for awhile now and two nights ago he decided to do it! So proud of him. He has also been trying to take more steps on his own. Praying this is a sign that we may have a walker soon! He also has been trying to mimic Bri and I now when we say not only words but FULL SENTENCES. He is growing up! So proud of my baby! Caleb and I also went to the grocery store on our own the other day. We are really trying to carefully ease up on the isolation restrictions. The past times we have gone grocery shopping with Bri, but Caleb and I did it on our own! Who knew grocery shopping would be so much fun!

Thanks for checking in! Please pray that g-tube hole closes on its own.

God Bless you all!!

God Bless Caleb!!

Surgery Update

Well Caleb had his surgery yesterday. We got up at 5 and were out of the house at 6. We arrived at Children's Hospital right at 7:30. A couple minutes before we reached Children's Caleb was asking for milk. This is the first time we have had to deal with a child that drinks and eats pre-op. So it was very difficult for him to understand why he couldn't have any milk. But we and he dealt with it well. Once we got back in the pre-op area, poor Caleb knew all too well where we were. He got very upset. My heart broke, as I realize that now that he is older he knows what is to come. We got him calmed down in the pre-op area and watched some cartoons while we waited. I am not sure if the wait wasn't long or if my nerves were so bad that I didn't notice how fast time was passing. But soon they were ready to take him to the OR. I had such a hard time also in the pre-op area. I know some would think that the amount of surgeries Caleb has had up to this point, which would be probably in the 30's, that one would get 'more used' to the routine. But it is quite the opposite. They do give you the option of going into the OR with your child as they put them under the General Anesthesia, but I did that two times before and it is very hard to see. So I carried Caleb the whole way from the pre-op room, down the hall, until the docs said that was as far as we could go with him. As I went to put Caleb back in the crib, it broke my heart as he cried and said 'nana' and reached out for me and Brian. That is the first time he also 'verbalized' how upset he was. It doesn't get easier. His surgery was finally done and soon we were able to see him. We went back and he was curled up in a ball in his crib. The nurse asked Bri and I if he was a cuddler and we said yes, and she said she could tell by how he was sleeping in the ball in the side of the crib. I immediately picked my lil man up. Once again, trying to figure out where all the tubes and wires were to make sure I didn't pull anything. I can't believe he had tubes and wires on him constantly and how moving him around with all these things attached to him at one time for so long was second nature. Nevertheless, I scooped up my lil man and held him. Then, I handed him off to Bri so he could hold him also. Once he began to wake up he was very groggy. It took him about an hour and a half to come out of the anesthesia and drink enough to come home. On the ride home, he didn't seem as 'unaffected' by the surgery as he has with some of his previous surgeries. Once we got him home, he curled right up on the couch and passed out. He slept for about 2 hours and then woke up and was very cranky and obviously in some pain. We gave him some pain meds and he then passed back out. We also realized this was about the time that the epidural they gave him for pain was probably wearing off. He then slept for about two more hours, waking up in between crying. At about 8 o'clock he tried drinking some watered down milk and it went well, but an hour later he started gagging like he was going to be sick. This is also a new thing for us and him as he always had the g-tube and if he was sick we just vented that to prevent the vomiting. So he cuddled with his daddy while he was sick to his tummy and the nausea seemed to subside (as he can't actually tell us, but we could tell from his demeanor) as he started to move around a little more. After sharing some jello with his dad we got Caleb into bed. He slept through the night and seem to be doing better this morning.
I cannot thank everyone enough for all the messages on facebook and texts regarding Caleb and all the prayers for him and our family. You all have been so supportive to all of us throughout this and we cannot thank you enough. You all are amazing people and friends. Thank you for being such a wonderful support system for our family!

God Bless you all!!

God Bless Caleb!!

Therapy Evaluations and G-tube update

So we got to take Caleb to two out of three of his therapy evaluations at the new clinic the other day. It was nice that Brian was off and was able to go with us. We were so very impressed with the facility and the therapists, they were amazing. Brian and I felt so good after we left there. It would have been nice if we could have done it sooner, but Caleb's immune system at that time wouldn't have allowed it! WE are so excited! They have amazing equipment that I hope and pray will help Caleb with his delays.

One of the biggest goals is to get Caleb walking. Some other goals: communication (i.e. letting us know what he would like to eat, letting us know if he doesn't feels well by signing or saying something like 'my tummy hurts', letting us know what he would like to do, etc) brushing his teeth and spitting it out when he's done, dressing himself, going up and down stairs, these are just a few but some of the bigger goals. He can do it!

Also, his g-tube site, continues to leak. We are changing the dressing constantly along with outfits. It has been nice that the weather has been so warm because due to all the leaking, I let him go around the house in his diaper and sometimes a shirt. He loves it, he hates wearing clothes. I have called the docs again regarding trying to get it surgically closed next week when they fix his hernia and unfortunately they put me through to a nurse who has no idea of how many surgeries Caleb has been through already and how if we could group these too surgeries together it would be better for him. So frustrating! But I am praying that it will close on its own before then and he won't need it to be surgically closed.

Well that is all the updates for now. Gonna color some eggs today. Still trying to figure out how to approach the Easter egg hunt with Caleb as I am not sure he will understand. We will see!

Happy Easter Everyone!

God Bless you all!!

God Bless Caleb!!

Big Boy Room and More Changes

So Caleb finally got all his big boy furniture in his room! I couldn't believe when I walked in how grown up his room looked, no evidence of a baby anymore :( But it is good that he is growing and is in a big boy room

First night sleeping in his big boy bed.

He loves waking up in the morning and seeing himself in this mirror from his bed.

One fixture that we are so glad that is not in the room anymore is his IV pole. I can't believe at one time we had three pumps (two for his IV and one for his feeding tube) on the IV all the time and that he was at one time constantly hooked up to those pumps! So his newest accomplishment is that he has been drinking and eating enough by mouth that he is sustaining his weight so he doesn't need supplemented by the feeding tube at night anymore.

In relation to the feeding tube, he has also been taking his meds by mouth. He still resists when he sees me coming with the syringes at med time, but he is doing well. So since Caleb is taking his meds and eating and drinking well we decided to...

now ya see it

now ya don't

After we got done taking the g-tube out and putting the bandaid on Caleb seemed happy...

Sometimes, these holes, left by the g-tube will heal on their own, within a couple hours, other times, they don't. It has been a day now since we took it out and Caleb's is still leaking a lot, requiring many dressing and shirt changes. With how long Caleb has had his, and with how the stomach lining started to come out of the hole (sorry too much info) we are worried it may not heal on its own. If not, it will require to be stitched in surgery. Please pray this heals on its own and that he doesn't need surgery to close it up! Way to go Caleb on another HUGE hurdle!

Also, Caleb's hernia surgery is schedule for April 7th. The craniofacial team does not want to group the nose repair with this surgery as they feel it would be too much at once. So, as long as the surgery goes well and he extabates okay it should be a same-day surgery. We did ask if they would just go ahead and close the hole left from the g-tube while they are in there, and they said they would rather wait a couple weeks. I am a little upset with their response as if he is in there, why not do it while he is under rather than doing another surgery and exposing him to more General anesthesia. We are also planning a little vacation in a couple weeks, and it would be really nice if that g-tube site was closed up. So please pray for a smooth surgery and that the g-tube site heals quickly and on its own!

Also, we are meeting with new therapists tomorrow for Caleb's evaluation. This is the therapy I talked about a couple posts back that will be an out-patient clinic therapy that he will have to go to the site and do his therapy. They have tons of equipment that we hope will help Caleb with his delays!

Way to go Caleb for all your continued achievements!

Thanks all for checking in!

God Bless you all!!

God Bless Caleb!!

Clinic Appointments

So as promised I am updating regarding Caleb's clinic appointments last week. Very busy week to say the least.

So on Monday we saw the whole craniofacial team, our family. This was the first group of docs that we met at Children's so we feel very close to all of them. They always watched over us and Caleb when Caleb was in the hospital. We hold them all very close to our hearts. With that being said, a couple things resulted from Caleb's clinic appointment with them. First, he needs to have his teeth cleaned, and thankfully he will not have to be put under General Anesthesia to have his teeth cleaned. I will be able to hold him when his teeth are cleaned. So thankfully that is one less exposure to GA. Also, Dr. Losee, Caleb's craniofacial surgeon, did suggest Caleb have his nose repaired one more time since Caleb didn't have the optimal molding circumstances prior to surgery due to how sick he was. So he said he would like this to be done before Caleb starts school. We also talked about tacking Caleb's right ear back at that same time. His right ear was folded over in utero therefore it grew bent over. The tacking of the ear will help his hearing aid stay on better also. Since this is the better of the two ears, hearing wise, and this is the only ear that can wear an aid, we want it to be the best fit for wearing the aid too. We also saw a speech therapist, who based of what sounds and words we told her he says (as he still doesn't talk in public yet as he if VERY shy when he gets out as being in public is very very new to him) they think his palate repair is working well in regards to his speech. We were then off to see ENT and audiology. They did another hearing test and it seems like the results are the same as in the past, severe deafness in the left ear and moderate to severe hearing loss in the right ear. These results are still surprising to all of us that interact with Caleb as it seems he hears so much and some things that are so low-toned and quiet. Also the ENT said that now they suggest a Catscan to see if there is anything anatomically that is causing the hearing loss or if there is anything that they could do to help his hearing. After that test, Caleb will then be seen in the Hearing Center to review the results. I did again ask if Caleb was a candidate for cochlear implants and they said that since he has a little bit of hearing in the one ear they do not want to do cochlear implants at this time, unless his hearing gets worse. Cochlear implants destroy all natural hearing and the hearing is replaced with an electronic style of hearing so he is not a candidate at this time as they do not want to destroy what hearing he has.
On Thursday, Caleb had an appointment with General Surgery to have a post opp appointment regarding his circumcision and to see what they think about the spot that I thought was an inguinal hernia. Well, first the doc said he healed well from the circumcision and I was right it is an inguinal hernia, which needs repaired ASAP. Ugh poor guy, I was really hoping, which I new wasn't realistic, that they would say let's see if it heals on it's own. But in the back of my mind, I knew that wouldn't be the case.
After that appointment I then walked over to craniofacial and told them what we found out about the hernia and that Caleb would need surgery and asked them if they would want to do the nose and ear repair at the same time, for one less GA exposure for Caleb. We have done this in the past, group surgeries together (logically though-not doing too much) to limit the amount of times Caleb is exposed to general anesthesia. But again, this depends on what is being done, who is doing it, the amount of pain that could be involved, etc. So there are plenty of factors. We are still waiting to hear back from Craniofacial as to whether they want to do these surgeries together. I doubt that they would feel comfortable doing a hernia with a nose repair, based on the locations of the surgeries. We will see. I will update when I hear. He also has an appointment with the Children's Immunologist on Friday and I will update on that too. Sorry this update took so long, but I was very tired after all the appointments last week.
So I wanted to include some pictures this post too! I included some of Caleb out in the snow for the first time, so cute.

Bundled up to go out. HA HA too cute right?!?!

Caleb peeking next to our awesome dog, Saba.
Caleb also just got new big boy furniture for his bedroom. I can't believe how grown up his room looks. I will post those pics soon. You won't believe it!

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!

Bump in the Road

Hello all...I hope everyone is staying warm and being safe in all the snow.

Well, we have hit a little bump in the road. The other day when I was getting Caleb out of the tub I noticed a bump that looked like an inguinal hernia to me. I called the doctor and they scheduled an ultrasound. Well, the ultrasound was this morning and the tech that did the ultrasound was puzzled as the bowel didn't seem to be entering the area where the fluid sac was and wasn't 'acting' like a hernia. She then asked if Caleb had any bowel issues at birth and I immediately said 'no'. I called his pediatrician and told her about the ultrasound and I am waiting to hear back from her. I am really hoping I hear something today as the hernia (that is what I will call it for now) has been more noticeable every day. Please pray that it is nothing serious and it is something that can heal on its own, the last thing Caleb needs is another surgery.

God Bless you all!!

God Bless Caleb!!