Sweet Saba

Our sweet dog, Saba, passed away early this morning here at home. She had been having problems the past few months but did not seem to be in pain until lastnight as she was not able to walk really well at all. We were going to take her to the vet this morning to put her down, but Saba as courageous as she always was, decided to do it on her own terms. We found her early this morning in our hallway. Saba was our first child. She was an amazing dog, very loyal and wonderful and protective of the family. We loved her very much. We will miss you so much Saba we love you. Rest in peace Saba dog! We love you pretty girl!

Just this side of heaven is a place called Rainbow Bridge.
When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge.
There are meadows and hills for all of our special friends so they can run and play together.
There is plenty of food, water and sunshine, and our friends are warm and comfortable.
All the animals that had been ill and old are restored to health and vigor.
Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.
They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent.
His eager body quivers.
Suddenly he begins to run from the group, flying over the green
grass, his legs carrying him faster and faster.
You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.
Then you cross Rainbow Bridge together....

See at Rainbow Bridge someday Saba dog. Thank you for being such a wonderful dog. I love you!

God Bless Saba!!



God Bless you all!!



God Bless Caleb and Camryn!!

A lot Going on and A family in Need UPDATED

Hello all, well I did have some updates but I think I really need to tell you about a local family in need. I went to school with the father of this family and he is a wonderful man and his family really needs our help. I know all of you that read this blog are wonderful people so please spread the word about the loss this family has suffered.
Jason Koegler and his family (wife Sarah and two sons Will and Campbell) house burned down lastnight and they lost pretty much everything including their Christmas gifts. A website has been set up where they are collecting clothes and toys for the family. I am not sure on the sizes for the parents but I do know the boys wear 4T and 5T and size 12 and 10 shoes. Here is the website were they will be adding more info. But I do know that like some of you, if you live far away they are accepting monetary gifts too. Please visit this website and help this family.
http://koeglerfund.wordpress.com/
God Bless the Koegler Family!!
UPDATE
So the family needs gift cards more than anything. Places like Old Navy, Target, and Walmart. Please follow this link to send gift cards. http://koeglerfund.com/
God Bless you all!!

God Bless Caleb and Camryn!!

Still Waiting

Well we are still waiting on a decision to our appeal for Caleb's social security disability payments. I have called several times, and they do not have any updates regarding the decision.

Caleb continues to do well in school and with his therapists. He is talking and walking more. I am hoping he continues to improve in both areas! If we could really get him talking OR signing more that would be great. I have been really urging him to talk or sign more and he is picking it up very quickly, and sometimes uses signs or words on his own without prompting. He has also started back to his outpatient therapy as well and his therapists have noticed a difference in him since his start of school. They think he seems like a different kiddo, music to my ears that they think he is growing socially.

He is going to need another surgery, I think this around surgery number thirty something. The hole left from his g-tube did not heal so he is going to require surgery to close it. Caleb has always had the hardest time recovering from stomach surgeries, he even recovered from his open heart better than when his t-tube was placed. I am really hoping that this surgery recovery is not hard on him. I am so nervous about another surgery. I don't understand, now looking back on it, how we mentally handled Caleb have so many surgeries close together. He is so tough and I am so proud of him. We have also found out that his tear duct in his right eye is blocked and will need a stint placed surgically after the duct is blown out. After three months they will remove the stint in the office, YIKES. So the surgeons have been so wonderful to agree to share the OR to get these to surgeries done under one GA (general anesthesia) exposure. Thank goodness, he has had so many surgeries (somewhere in the thirties) that one less exposure to general anesthesia is good!

Caleb is really beginning to try to interact with his sister, Camryn. He shows her his toys and I even got him to give her a kiss. We have been blessed with two wonderful children.

I also have to say how proud of my husband, Brian, I am. He has worked hard at AT&T for the last couple years and recently interviewed for a sales position with Lamar and was hired. We are so proud of you Brian! Congratulations.

Also, a special prayer for a friend of ours who passed away three years ago from Leukemia. Samantha Welch was a strong and beautiful 17 year old that fought so hard. We met her and her mother while we were at Duke Hospital for Caleb's transplant. We became very close with the both of them. Samantha always drew pictures for Caleb that we hung all over his room, and when she would do her 'laps' around the floor. Should would always knock on the door and talk through the glass door to Caybay as she couldn't come into his room because of his isolation issues. We visited her room often though and became very close with her and her momma Faith. We all believe Sam is one of Caleb's guardian angels. Sam we love you and miss you so very much. Faith we think of you often and miss you too! God Bless you Sam and Faith!

Thank you all for stopping by and checking in on us!

God Bless you all!!

God Bless Caleb and Camryn!!

Pumpkin Patch (UPDATED)

Hi all, I hope everyone is enjoying this month's festivities. We were able to go to a pumpkin patch recently,first time for Caleb. We had to move quick though as a storm was moving in.

Caleb started smiling when he saw all the pumpkins. He eventually walked around a little bit holding my hand and he did great. We picked out two pumpkins, which we later carved. He was in shock at that whole process too. He was so cute watching Brian and I when we carved the pumpkins.

Well, Caleb is still fighting his nasty cold. He is on another round of antibiotics. Poor guy. Hoping he can shake this cold soon! He is supposed to get his next round of shots/immunizations next week, but I am not sure if he will if he is still sick!

Caleb got to dress up for school for Halloween this year, he is spiderman! He won't wear the hood as Caleb is really averted to any type of hat, which will make dressing this winter difficult. But he kept his costume on all day and he looked very cute! I only got pictures of him at school with my phone, so I will take more Halloween night with my camera to post on the blog. He looks so cute as Spidey!

A couple of our friends are going trick or treating at our local zoo tonight. I would love to take Caleb but I am not sure if it is the best idea. One, he hates to wear hats and unless I can figure out some way to keep a hat on his head (even the ones that have the Velcro strap he manages to take off) it is a definite 'no go' as he has to stay warm especially with still having his cold. Two, I am not sure how he will react to that many people and the 'fright' aspect. So it looks like I am leaning towards a 'no go' as of right now. :(

As far as social security, I have contacted many local politicians and only two responded and were not a great deal of help. So needless to say I don't feel a strong urge to hit the polls this Tuesday to vote. Such a change for me as I used to be so big into politics. Anyway, we are filling out the paperwork to file the appeal. Praying they approve our appeal and don't make us pay the money back.

UPDATE: Got a letter of response in the mail today from Senator Rockefeller in regards to Caleb's SSI. I have to sign a form to allow him to look at the info, per the Privacy Act. WOOHOO I hope he can help us! He has helped or tried to help in any way every time I have asked! Thank you Senator Rockefeller!

I also wanted to say a quick thank you. I often wonder if I thank everyone enough. You all have been so wonderful to our family through the past four years. We are truly grateful for the emotional and physical support you all have provided for our family. It has meant so much and continues to mean so much to us. I thank you all for understanding our situation and our special circumstances. Thank you so much!

Well all, I have an itty bit waking up wanting to be fed. I will post Halloween pics as soon as I can!

God Bless you all!!

God Bless Caleb and Camryn!!

One of those tearful days

So I was going through the mail and received a letter from our wonderful government regarding Caleb's disability payments. The letter indicated that they want to be repaid back all of Caleb's monthly disability payments back to October '08 yes that is right of 2008. So I called the national number and the only explanation the lady could give me there was that we owe the amount specified in the letter, no explanation of why. So then I called our local office and the explanation I got was they just got through all of our information we supplied which makes no sense at all. You supply information every couple months along with pay stubs. BUT NOW TWO YEARS LATER they want everything back. What is wrong with this scenario? It takes them that long to go through everything? Are you kidding me? Nonetheless, I FULL well know that the months that we submitted pay stubs for Caleb should have gotten disability payments based upon the criteria set by our wonderful government. So the lady at the local office was of no help, all I can do is file an appeal while our government wants a lot of money back. I am disgusted. I am disgusted at the fact that we all know and have seen individuals out there that totally abuse the system and get help when they shouldn't and then there is an individual such as Caleb, who was initially told by the SSI 'he wasn't disabled enough' to get disability, who finally was approved for disability but now they want all their money back. Our government is ridiculous. I have been in the past a pretty active participant in supporting our local politicians and government, why? so they can do stuff like this to my son? I will not vote or partake in any elections anymore. They are all corrupt. They worry about themselves and not about how THE SYSTEM is failing people such as my son. I am sorry to have such a bitter post. But why do I continually have to fight with our government to get him disability. It took over a year to get him a state disability medical card. It shouldn't be this hard. Our government is getting worse and worse by the day. How can they do this?!?

Please say a prayer that Caleb get the help he deserves!

God Bless you all!!

God Bless Caleb and Camryn!!

Another infection?

So Caleb has had about three colds since the start of the school year. Unfortunately, this last one seems like it is a little harder for him to kick. This cold started about a couple weeks ago after we had a trip to the ER after he had a reaction to a vaccine. Which, I would love to note is the first ER trip that did not result in a life-flight! How about that for a milestone?!? Back to the cold..we were hoping to attend a Family Fun Night this evening at Caleb's school as Bri and I were so excited to attend something like this and see how Caleb plays with other kiddos and just to be able to go to something like that is a big deal to us as not to long ago we weren't sure we would be able to do something like this due to Caleb's medical condition. Well needless to say, Caleb has been running a fever off and on and we just got back from the hospital to get some chest x-rays and we will see the doctor this evening to try to figure out what is causing the fevers (as he still can't tell us where he doesn't feel well) and to try to get him some help to get rid of this cold. Looks like we will have to wait until the next family fun night.

Also, Caleb's school pictures came back. His teacher was so excited to show me the picture when I dropped Caleb off at school on Monday. I couldn't believe my eyes the pictures were perfect.

He didn't hide his face and he smiled, of course I did hear from a little birdie that his teacher and aide worked very hard to get him to smile like he did and not to hide. Thanks ladies! There is still a little evidence of his black eye that he got from a fall in school, but we don't mind. He looks great! So I held it together and then when I got back to the car from dropping him off I started crying. I remember praying for things such as this when Caleb was so sick in the hospital. Thank you Caleb for fighting so hard when you were sick. We love you and are so proud of all of your accomplishments. Keep it up lil man! We love you!

Thanks for checking in on Caybay!

God Bless you all!!

God Bless Caleb and Camryn!!

Bumps and Bruises

So school is going well, however, since Caleb is new at walking he takes things too fast and has fallen a couple times in school. He actually gave himself a black eye when he fell and cracked his temple on a chair. His teacher is wondering if he would be safer wearing a helmet while in school so he can be independent yet safe. We okayed the idea so we are looking into helmets. I also asked the school and his physical therapist if she could go evaluate him at school to see if she could make any suggestions. She will be visiting his classroom this week to see if maybe some sort of brace could help him be more stable.

Caleb has been very adamant at not wanting to wear his hearing aid and we aren't sure why. We are taking him to his audiologist this week to get a program put on his hearing aid that will allow him to hook up to the FM system at school.
Here is a little bit about how an FM system works:
Personal frequency modulation (FM) systems are like miniature radio stations operating on special frequencies assigned by the Federal Communications Commission. The personal FM system consists of a transmitter microphone used by the speaker and a receiver used by the listener. The receiver transmits the sound to your hearing aid either through direct audio input or through a looped cord worn around the listener's neck.

Personal FM systems are useful in a variety of situations such as listening to a travel guide or book review, in a classroom lecture, in a restaurant, in a sales meeting, or in a nursing homes or senior center.

FM systems are also used in theaters, places of worship, museums, public meeting places, corporate conference rooms, convention centers, and other large areas for gathering. In this situation, the microphone/transmitter is built into the overall sound system. You are provided with an FM receiver that can connect to your hearing aid (or to a headset if you don't wear a hearing aid)

I am hoping he will get over this aversion to the hearing aid, as I think the FM system for him would be great. Crossing our fingers that he gets used to his hearing aid again very soon. I have also asked the audiologist if we can fit Caleb for a piece that goes on the hearing aid to help it not flop on his earlobe as this is the earlobe that folds over a little bit.

Well I just wanted to post a quick update to let you know where we are!

God Bless you all!!

God Bless Caleb and Camryn!!

Where to Begin..

Okay so once again sorry for the delay between posts but we have had A LOT going on!

The last trimester of the pregnancy was really rough and pretty much per docs orders rendered me on a low activity level. So I was very busy just doing stuff around the house to keep us all sane and took a break from the blog! Thank you all for the emails though and concern about Caleb. I am back now and will update more regularly!

So where to begin..

Well Mr. Caleb started school and he is doing awesome. It was very hard for me the first day to drop him off but it was so exciting in the next breath. We were originally taking Caleb in daily in his stroller. However, the last couple days Bri or I walk him in holding his hand. Last Thursday, we were expecting him to be brought out to the car using his stroller but to our amazement he was walking out holding his teacher's hand. This is a huge step for Caleb as he usually only walks holding Brian's or my hand. So great to see him walking out with all his classmates. He is also saying some words in the classroom and interacting with his classmates. This is also a big step for Caleb as he usually has to take a while before talking around others. He did catch a cold his third day in which he brought home and shared with the whole family. I am sure this is the first of many bugs he will bring home and share with us, but I am happy to say that it is nice that we don't have to be so scared when he got sick. Of course there are still some bugs out there that we have to watch out for, i.e. chicken pox, but it is nice that not EVERY bug is so scary! Another awesome thing is his teacher gets so excited about the smallest things like we do so it is so great when we pick him up and she tells us all about his exciting developments and progress. He even said her name one day in class which tickled her pink. It is so great to see that they are so invested in his development too! He is amazing isn't he?!?!

Caleb is also now a big brother! Camryn Jayde Hlebiczki was born on August 24th at 8:54 a.m., 19.5 inches long, and 7 lbs. 5 oz. She came out screaming. She is beautiful and we are so happy she is here! She does have colic so it is making for some long nights, but we are all slowly adjusting. Caleb will make sure to let us know when she is crying. He has only touched her a few times, but is very curious about her as he watches her when we are holding her or when she is sleeping.

So this is a pretty short update, but I wanted to let you all know that we are okay and I will be updating more regularly now that we are trying to get into a routine.

God Bless you all!!

God Bless Caleb & Camryn!!

Happy Birthday my Wonderful Four Year Old

It is hard to believe that Caleb is four years old today! Wow, my baby is four! I remember praying that he would make it to his first birthday! Wow!

We had a party this past weekend with family and it was so great for him to be around his whole family and cousins again. Just watching him during his birthday celebration was amazing. I can't even put into words what that day meant! He is such a strong little boy. We are so proud of you Caleb, keep up the great work!

Brian and I got him a fish tank for his birthday, which he is infatuated with. He falls asleep watching his fish. He even will go up to his room after coming downstairs for the day to go check on his fish. Too cute! He also received MANY other gifts for his bday and was not scared of one. Which is a huge step in regards to his sensory aversions. Before, it could take Caleb's days, weeks, maybe never, to warm up to a toy that made noises or moved.

Brian and I are amazed at how much he has seem to grown in the last couple of weeks. He is so amazing! He is getting more comfortable with his therapists also.

A huge development for Caleb is it looks like he will be going to pre-school in the fall. We are so excited for him. He will be in a classroom with 10 other differently-abled kiddos, so the class won't be too big. He will also get therapy while he is at school too. I think this will be so great for him. I definitely think it is going to be harder on me than on him. I am a mess thinking about being away from him. I start to tear up...but don't get me wrong I definitely want him to do this it is just going to be hard. I am so excited for him!

Well, I will post birthday pictures as soon as I get some uploaded. A lot are on my phone too, so it could take me a few days. Again, sorry for the delay in posts, we have been a little busy with summer activities and getting ready for baby girl.

Thank you all for checking in!!

God Bless you all!!

God Bless Caleb!!

Beach Vacation

Wow, did time fly. We had a great time. Caleb did great traveling! It was really windy the first two days on the beach and Caleb didn't like it, but he got used to as the week went on. There was an indoor pool at the condo, which Caleb did great in. One day he even let us put floaties on him (huge step for his sensory issues) and he did his version of a doggie paddle while we held him. He did great. I am hoping we can get him to doggie paddle on his own by the end of this summer. He still was not a big fan of the sand or the ocean. He eventually did play with some shapes in the sand, but he remained on the blanket and would not sit in the sand. We carried him down to the water too a couple times, but he didn't really want anything to do with it. However, he did tolerate sitting on the blanket on the beach A LOT better this year, so he did make progress. We were able to go out more too this vacation and do more dinners out and shopping. We had so much fun, to live normal and interact with people was such a great feeling! We had so much fun and it was over so quickly. I really wish we lived closer to the beach! Well I have put together a quick montage of some pictures from the beach (I created the pictures to have captions, but some of the features of the software I use aren't working, not sure why), enjoy.

Make photo slide shows at www.OneTrueMedia.com

God Bless you all!!

God Bless Caleb!!

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!!

Bottoms Up!

So Caleb has been doing great with drinking. He has been drinking around 30 oz of fluids a day! CRAZY huh?!? We are so excited! He is doing so well that we have stopped all feeds by his feeding tube at night. Our little boy is getting all his fluid intake right now by mouth! We are praying hard this continues! We would love to get his mic-key button out! The next step will be to figure out what to do with his meds as he still gets all of those via g-tube, and some are through the night too! So this will be tricky, but he can do it! We have faith!

Also another tidbit of great news...he is kicking that nasty cold on his own! Once again he did better with the cold than I did! He is closer to getting rid of it than I am and he required no medicines to help! WOOOOOHOOO Caleb! I am so proud of my lil' man! He is so awesome!

We have a busy month coming up of clinic appointments coming up so I will update everyone on the appointments as they happen.

We also may potentially be going to Duke in the middle of March. We were contacted by wonderful Dr. Markert (the amazing Dr. that did his Thymus Transplant for Caleb's immune system) and they have received grant money to do more research work in regards to the Thymus Transplant. This phase of research would be to see if and when the body stops making T-cells after Transplant. It is a non-evasive phase of research. It consists of a 24 hr admission at Duke where Caleb will drink certain amounts of 'heavy' water (certain water that bonds to t-cells) every couple of hours. Then he will get doses of this water twice a day at home for the next month or so. Then blood work will be performed and analyzed. When Dr. Markert called me to ask if we will be interested there was not hesitation in my response once I heard it was non-evasive. She is an amazing woman, who has saved numerous kids, and how can you say no to such a remarkable woman. We love you Dr. Markert. I will be going over the consent with Dr. Markerts wonderful head RN, Stephanie on Monday. So I will update on this too once we learn more!

Also, Bri and I went to the high risk doctor yesterday that we saw when we were pregnant with Caleb. Right away on ultrasound they noticed the smaller of the twins didn't make it. I wondered if it was going to make it as in previous ultrasounds it looks so tiny compared to the other. Dr. Thomas was great! He sat in the room with us and looked at everything on the other baby: the brain, heart, spine, face, fingers, arms, ears, eyes, nose, lips, etc. And so far everything looks great! They did ask us if we wanted to know the sex of the baby...We wanted to keep it a surprise when pregnant with Caleb, but with all the complications we found out Caleb was a boy. With this pregnancy, we felt like we have had enough 'surprises' in our life. We also were worried that if it was a girl and we didn't find out the sex we would be dressing her in a lot of boy clothes! So they were able to look at the sex plate and let us know that.......IT's A GIRL! Caleb is going to have a little sister. Personally, that is a great scenario as I had two older brothers looking over me when I grew up (and they still do!) and now Caleb can watch over his lil' sister!

God Bless you all!!

God Bless Caleb!!

Hello again...

So Caleb continues to have his on and off days with drinking. The on days are pretty good now, he will drink OUNCES of milk and yes I said OUNCES. It is amazing the day he started chugging Brian and I were shocked. Love seeing him drink. One step closer to getting that feeding tube out, but we have to get him to drink daily and maintain his weight.

We are still having difficulty trying to get Caleb to walk. Good news we found out about a place closer to home that does speech, physical, occupational therapy and other services. We are so excited taht something like this exists so close to home! Brian and I DEFINITELY want to do this for Caleb, but this therapy does require Caleb to go to the facility. Now, Brian and I will have decide if we should wait until spring to start this therapy due to it being flu season. We are going to talk about it and also get Caleb's doctors' opinions. I am so so so so excited about this opportunity for Caleb hopefully this will help him with his walking, verbalizations, sign language, etc. This will be so great for him!

Unfortunately, Caleb has ANOTHER cold. We are very puzzled as were he got this cold. The poor guy has a very runny nose, cough, and is sneezing like crazy. We are praying that with rest he will recover from this cold and will not need antibiotics! Come on immune system, show us you are working!

Also another new development for our family. We found out that Caleb is going to be a big brother! That's right I'm pregnant. The ultrasound shows twins! One of the twins is a lot smaller than the other. We were planning on seeing the high risk docs that we saw when we were pregnant with Caleb as we are considered 'high risk' and even more so now that there are twin and those of different sizes. So we will see them in a couple weeks.

So as you can see we have been busy!
I will update again soon!

God Bless you all!!

God Bless Caleb!!

Once again sorry for the delay in posts

Sorry for the delay in posts. Caleb and I finally got rid of the nasty cold we had. He seemed to do a lot better with it than I did. That is definitely an encouraging sign in regards to his immune system. Of course he did need help with antibiotics, but he fought of the cold. I am just praying we make it through the rest of this nasty flu seasons without anymore bugs.

A couple of updates:

Caleb had a couple days where out of nowhere he was drinking! One day he drank up to six ounces of milk! He never even drank when he was born so this was awesome to see. Unfortunately, the last two days he has had no interest in drinking so we are hoping he will get the urge to drink again today. I am going to work with him after writing this post, so we will see how it goes. Fingers crossed!

Brian and I took Caleb out with us about a week ago and had so much fun. We went to the store and then...wait for it....to Applebees. WOW, I can't even express how awesome it was to be out as a family at a restaurant. We wiped down the highchair and table and asked the hostess to seat us as far away from others as possible. It was so neat to do this. I think Bri and I smiled all the way through dinner. A cute little story while we were at Applebees: when we first sat down Caleb got a kid menu (which was neat as our kiddo could eat something off the menu) and he kept saying applesauce and signing it and we figured out he saw the apple on the kids menu. Cute right?!? He also met a friend, a lady, who he waved to and flirted with all dinner. Reminded me of when he used to flirt with all the nurses, his girlfriends, when he was in the hospital. We also go to see a a couple of friends while we were out. It was so nice seeing you all and thanks for understanding and not getting too close to Caleb! We love you guys!

Caleb has been mimicking Bri and I more, which is fun. We try to get him to say all sorts of things. Our favorite so far is 'butterfly' he sounds so darn cute when he says it! A lot of this mimicking is done without his hearing aid too so that is amazing in itself also. In regards to his hearing aid, we got it fixed about two weeks ago. We tried a local audiologist which we loved, Tri-state Audiology, and she was great! Caleb wore his hearing aid the first day after getting it repaired but now we are having a lot of issues with trying to get him to keep it in. He has never done this. Have any other parents with kiddos with aids dealt with this? If so, what happened? Any feedback would be appreciated!

Well that is a good amount of updates for now, there are many more. I will update again soon so please stop back soon! Thanks for stopping by!

God Bless you all!!

God Bless Caleb!!

We had a great Christmas and New Year

So what is the meaning of Christmas...not the amount of present under the tree and how much money you spent...it is that your family and loved ones are around you. We were blessed to spend our second year in row AT HOME as a family for Christmas and New Year's. What a great day. Caleb didn't open his gifts as he wasn't sure about it but he was very intent when I or Brian unwrapped his presents. Thank you to all the Santas that sent Caleb gifts too. You all are too too kind, thank you so much! I have included some pics of a snowstorm that came a couple days before Christmas, Caleb opening his gifts, and Caleb looking/playing with the Steeler tree we got from my parents.

Make an on-line slide show at www.OneTrueMedia.com

Unfortunately, a couple days after Christmas Caleb got very congested and we were not concerned as long as it didn't seem to bother him or get any worse. I, about two days after Caleb started getting congested, ran a fever and got very congested also. Well, this morning he woke up coughing or should I say barking like a dog or a seal. I walked into his room and he was sitting up in bed crying and coughing and trying to catch his breathe. Brian and I noticed his congestion had started moving lastnight and we were worried that maybe his congestion had moved to his chest. Our pediatrician is out of the office for the holiday so we decided to take him to MedExpress as we love all the docs there. They were great. We were so excited when we walked in and saw Dr. Burkland! He is not only an awesome doctor but a family friend! He said that both Caleb's and my symptoms are due to a nasty bug circulating around that is very similar to the flu. He listened to Caleb's lungs and said they sounded clear! Thank goodness. So they gave his a strong steroid via his g-tube that will hopefully help him with his cough and will help him get rid of his cold. I will post soon with updates on his cold.


Also, on a side note, some anonymous person is leaving unwanted comments on this blog. I now will get notifications when someone leaves a comment then if it is not that person I will post. So please don't be alarmed if you don't see your comment right away and PLEASE continue to leave you comments.

Thanks for checking in!!

God Bless you all!!

God Bless Caleb!!