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, December 26, 2008

Christmas at HOME!

Okay, so it is official! Caleb spent his first Christmas at home! It was amazing and emotional to say the least! We had a great time! Unfortunately, both sets of Caleb's grandparents were sick so they were not able to come as we cannot take the risk of possibly exposing him to something. We will do Christmas with them when they are better.

Caleb woke up bright and early Christmas Eve, which was kind've ironic; like he knew how momentous this Christmas was. Brian and I, being the cautiously optimistic people we are, did not say anything about Christmas being at home until it was actually Christmas day and we were at home. We know how quick the situation can change. It was so much fun to get Caleb into bed Christmas Eve and to know we could run downstairs and play Santa! We had a ball. The next morning Caleb woke up early again and we brought him downstairs and dove right into the presents! It was so much fun! Due to his sensory aversion issues, it did take him awhile to 'warm up' to each gift. But when he did he had a ball! So darn cute! We also were blessed, yet again, by all of our wonderful friends by gifts on our front porch throughout the day. Thank you all. Caleb rarely naps however, yesterday he needed one. I rocked Caleb to sleep in his rocking chair in his room yesterday for his nap (which is still a new thing for us as we didn't get to do this while he was in the hospital-so I love when he settles and lets me rock him). He had a great nap and then we were ready to watch the story on Channel 7 regarding Caleb. It was beautiful Stacy did a great job, Thanks Stacy! She is working on posting a link to their website and once they do I will link it on this webpage for those of you that are out of town and did not get to see it!

I put a montage together for you all! It is too cute! Merry Christmas everyone and Happy Holidays! Check back for the news story link!

God Bless you all!!

God Bless Caleb!!

Wednesday, December 24, 2008

Merry Christmas


We just want to wish everyone a Merry Christmas and a Happy and Healthy Holiday!

Also, I just got word from Stacy Rich that Caleb's story will air tomorrow on some, maybe all, of the evening newscasts on Channel 7 at 5,6,10, and 11 and may air on Friday morning's show (5-7). She again appologized that she wasn't given more time for his story, but, again it is enough time to thank you all for helping us the last two years and to get his story known to those who still don't know him. Sorry I do not have defnite times, but just check tomorrow evening and Friday morning.

God Bless you all!!

God Bless Caleb!!

Monday, December 22, 2008

Some Media Coverage and Another Video

Hello all...Well I know some of you who know are anxiously awaiting the details regarding the specifics of Brian's and my meeting today with a local news reporter here in the Valley. It went great! We met with Stacy Rich from Channel 7. She was so nice and made us both feel very comfortable, thanks Stacy! Unfortunately, she did let us know that she thinks she will only be allotted approximately 3 minutes for the piece even though she asked for more. Not a whole bunch of time, but yet enough to get his story out there and known to those who don't know him and for us to be able to thank wonderful people like you all for being such a wonderful support system for our family. She did say that she thinks it will air on Christmas Day and will be available online. She is going to let me know when she finds out the definite air time and date, and I will definitely let you all know and will see if I can post the link the day it airs on here for those of you who are not in Wheeling so you can see! Who knows maybe when this story airs, there will be others who will want to do stories also. Thanks again Stacy, it was so nice to meet you!



Other updates:

Caleb's line looks less red! We are hoping and praying that it continues to improve and thank you all for your prayers and thoughts you have been sending our way! We are so appreciative.

Caleb continues to pull up to stand as shown in the previous post's video and he is getting quick at it too!

He also, ready for this, has been putting teethers in his mouth AND biting on them, which is a big step as far as sensory input.

He has also began to pretend spit. I know how many parents are happy that their child is spitting...but this is such a big step as you have to push your tongue against your cheeks and lips to do this, so I will let him spit all he wants! We are still working with feeding and drinking . He continues to tolerate cups and plates better in his area which is amazing.

Caleb received his pseudo immune system infusion (IVIG) last Tuesday. We are tentatively planning to start his SUB-Q infusions, as discussed in an earlier post, this week. I have been trained on how to do this too so I will let you know how it goes. He will then get one infusion a week! This method has its pros and cons. IVIG is a very strong drug and when infused even in a central line (IV) adverse reactions (elevated temperature, respiration / breathing issues, severe rashes, etc) can occure. Therefore, one of the bad things about SUB_Q infusions is that since he will be getting it in his fatty tissue rather than in his central line(IV) these reactions can be more intense especially in regards to rashes on the skin. So that is definitely one thing we will have to watch and see how he tolerates it! The very big pro about SUB-Q infusions is that because it is given on a much more frequent interval, as comparted to the central line infusion, his levels will not be allowed to 'bottom-out' and should stay at a higher level; which in theory will hopefully provide him better protection.

I drew blood for his 3 round of Immune Test last Tuesday! It has not been a week and I already have become impatient and am wishing that by some miracle the results would come back a lot sooner (as the results usually take 4 weeks) yielding good news! We are praying that (as one of Caleb's doctors said) the third time is the charm! Come on T-cells!



As promised a video of little man! Again, sorry it was a quick video grab with my cell phone so the quality is not the best!

God Bless you all!!

God Bless Caleb!!

Saturday, December 20, 2008

Line Update and a Video

Well the line still looks about the same and unfortunately due to the frequent dressing changes his skin that is underneath the dressing is very irritated also. Poor guy! So dressing changes are pretty painful for him because you use alcohol to clean the site. However, it does look slightly less red than lastnight when I put Caleb into bed. So I am praying that the redness continues to lessen!

We drew blood for Caleb's Immune Tests on Tuesday so hopefully we will hear in a month that his Immune System is working! We are praying that the third time is a charm!

I have a little video below that I thought everyone would enjoy. It is not the best quality as I took it with my cell phone, but I thought everyone would want to see! Enjoy!

God Bless you all!!

God Bless Caleb!!

video

Friday, December 19, 2008

Prayers Needed

Well all...a couple days ago Caleb's central line site did not look so great. The area right around were the IV goes into his chest was very red and warm to the touch. We called the docs and they then told us to change the dressing daily and to put bacitracin (antibiotic ointment) on the area when we change the dressing. The warmness at the site has lessened and we are praying that the redness goes away and that Caleb does not spike any temperatures. Line infections, for kiddos with in an immune system is scary enough, but without an immune system to fight off these bugs is even scariers. So we are asking for prayers please that the redness goes away and that this is a minor irriation and nothing else. I will keep everyone updated!

God Bless you all!!

God Bless Caleb!!

Friday, December 12, 2008

Synagis Approved

Well we got word that the Synagis shot we have been fighting for has been approved! Due to two of Caleb's doctor's fighting diligently on his behalf along side of us we got 'word' that an approval has been authorized. The doctor's haven't gotten the official documented approval yet, but a phone call was made to them that the insurance had approved it. We have been fighting and appealing for this shot since September. This shot is administered in phases, once a month from October to March. So, yes, we are a little behind. But something is DEFINITELY better than nothing. Thank you Dr. Nash and Dr. Scholnicoff for you hard work! We love you guys! God Bless you!

We also are preparing to start Sub-Q IVIG infusions. What this means is the following: Caleb has been getting his 'pseudo-immune system' via IV infusions via his central line once a month. We are now going to do SUB-Q (inserting a needle in the fatty tissue in the hips, thighs, gut, or backs of the arms) IVIG infusions once a week. Even though this is a more frequent infusion for young child, it theoretically is less of an infection risk than accessing a central line to do the infusion. The plan then is...(drumroll)...possibly removing Caleb's central line in a couple weeks! We still are ironing out what Caleb's blood draw schedule will be if we would remove the line. The line will have to be removed under General Anesthesia, surgery, because it is tunneled so deep into a vein and it cannot be removed like a peripheral IV. We will then see if we can get some other small operative procedures done at that same time. We do this because Caleb has been exposed to so much GA (General Anesthesia) because of all the surgeries he has had that if we can group some things together the better and try to limit his exposure to GA.

Brian and I are meeting with a local reporter regarding Caleb on Tuesday also. We will let everyone know the details when we know more.

I will post updates again soon!

God Bless you all!!

God Bless Caleb!!

Monday, December 08, 2008

Blood Tests Scheduled, Updates, and Media Coverage

So we have gotten word that we are going to draw blood on the 16th of this month to check to see if Caleb's T-cells have responded to the third tetanus shot. We are hoping and praying that the third time is a charm! Then of course, we will have to wait for around three weeks to see what the blood work results. It would be great, if by some chance, the results could come back showing a response before Christmas, but, we know that we will probably have to wait until after the 1st of the year for the results.

As I said in the previous post, Caleb continuous to become more mobile. He has definitely started to crawl more and has now even started to crawl faster. He has tried to pull up to stand and seems like he tries to do this more every day. We still are fighting the sensory and feeding issues. Tonight at dinner, I was able to get about 7 bites of ham (stage 1 food) in his mouth and he probably cleared (swallowed without gagging) about 4 bites. We have found out that Caleb definitely likes sour tastes more than sweet, so we do therapy (try to get some of the sour salt off the gummy in his mouth )with Sour Patch kids to try to get him to stimulate him orally. For all that know my sweet tooth, I love Sour Patch Kids, so when that therapy time comes around we have a blast (probably me more than him though :) ) We are still trying to communicate better with Caleb. We believe what is going to work best for him is to sign and speak. We have been able to get him to say 'ho ho ho' for the Holidays and it is so cute! He also has started his own sign to let me know when he want me to pat his back. He will pat his chest and let me know to pat his chest. I then tried to see what he would do if I was not looking when he was trying to let me know to pat his chest. He then amazed me by grabbing my arm to get my attention, then started patting his chest. I will try to catch some of this on video so hopefully I can post it. He amazes me every day!

We still cannot get insurance to cover Caleb's Synagis shot (the shot that would protect him for a life threatening illness). The insurance company, after repeated appeals and wonderful letters from all of Caleb's doctors states they do not have to provide the shot because their is 'not enough medical documentation in regards to these kiddos and their syndrome and the need for Synagis'. Their reasoning is completely negligent and I cannot believe they use that as their reasoning. We continue to explain to them that of course there is not a lot of documentation because these kids with DiGeorge are very very rare. Caleb was the 50th in the world, so of course there is not going to be a lot of medical documentation in the FDA's records. Also, the treatment of this syndrome, the transplant, is not even been accepted by the FDA yet despite what Dr. Markert's research has shown. I don't know who else we can contact to help us on our behalf to try to get them to understand the need for this shot. Caleb's doctors have explained the risk of him not getting the shot and if that doesn't provoke them to get him the shot I don't know what will.

On a lighter note, the insurance HAS finally approved and upped our nursing hour coverage! We haven't gotten the legal copy of the approval in the mail, but we have been led to believe that he will get at least (maybe more!) of 12 hours of nursing coverage a day, seven days a week! I will confirm with everyone when we get the official copy in the mail.

Also, not that this blog has detailed Caleb's journey enough, but I have started to write 'Caleb's Story'. I just feel this would be a great keepsake for us, Caleb, and anyone else who would like to read about our remarkable little boy. It is definitely going to take a lot longer than I thought and is definitely very emotional to re-live most of the last two years but I think it is very important for Caleb to have in the future.

Brian and I are also considering meeting with the local media to do a story on Caleb, as we have had some initial contacts regarding Caleb and his journey. Not only to show everyone in the Valley what an amazing little boy is here in the area, but, how wonderful others have been to our family over the last two years. Not only have we been amazed by our son, but we have been so amazed by everyone's generosity, caring, and support for our family.

God Bless you all!!

God Bless Caleb!!

Sunday, December 07, 2008

Well Thanksgiving went well! The bigger news is that Caleb took seven bites of mashed potatoes and one bite of my cheesecake. He hasn't really eaten anything since, but it was a wonderful Thanksgiving. However since Thanksgiving Caleb has put teethers in his mouth every once and while! He hasn't ever done that either-so a big step for him!
Due to illnesses, the therapists have not been able to come on a regular basis as of course they can't come due to Caleb's immunosuppression. But, once again, Caleb has proven how tough he is and has really started to crawl more. It is so awesome to see him do that. He also has started cruising just a little bit along our coffee table. He also has pulled himself up a couple times too. So we are hoping he will continue to become more mobile. I went into his room the other morning and I was so excited to see him sitting up in his crib. Yes, he has been sitting up on hard surfaces for awhile. But sitting up on a softer surface requires more muscle control and I was ecstatic to see him sitting up. We have noticed that when we are 'walking' with Caleb that he turns his right knee out. The physical therapist said we will have to keep an eye on this to see if it is just a stage or if it something due to his double hip dysplasia he had at birth. He also is keeping his feet in a pointed position, so we will be keeping an eye on this too. If they stay pointed, he may require some type of brace down the road so it does not impede him from walking.
Well I have to go bolus feed the little man so I will post again soon as there are still many updates.

God Bless you all!

God Bless Caleb!!

Sunday, November 23, 2008

A couple updates:

Well we decorated the house for Christmas, a little earlier than I have done it in the past, but we figured since we haven't decorated for the past two years. It was so much fun and Caleb loves all the decorations. He helped/played with the decorations as I was decorating. It was nice to put his 'hospital Christmas tree' in his bedroom this year! Hopefully it will stay there! I am praying we can keep him out of the hospital this Christmas! Here are a couple pictures...sorry they may not be the best quality as I took them with my cell phone.

It is hard to believe that it was almost a year ago that Caleb finally came back to Children's Hospital after we were at Duke hospital for 7 months. WOW. I actually came across some pictures/videos from my old cell phone yesterday....and wow what a mixture of emotions on memories. I honestly don't want to go into it too much, because it is honestly too hard, but I think there was a time when we weren't aware of how sick he looked when we were waiting for the initial Immune tests/diagnosis to come back. I hope and pray that we can have more happy and healthy memories ! We continue to pray that this tetanus shot will spark his immune system and it starts working. A lot of people have been emailing me asking me when we will know if this shot worked. Well...you have to wait at least a month after the shot is given to draw the labs.
Then is usually takes 3-4 weeks for the lab results to come back. So...a long two months. Caleb's doctors have been awesome emailing and
calling us telling us to keep our chins up. They have been so wonderful to our family.


Also, for those of you who know my cooking abilities ...I am going to try to cook Thanksgiving Dinner. Hopefully we can keep Caleb out of the hospital for this Thanksgiving. If we can, this will be Caleb's first Thanksgiving at home! So what a celebration! So even though we are shut-ins, and live in our little 'bubble' to protect our little man. This is such an exciting time. Appreciate the small things! Be thankful, be Blessed!

Also, thank you to all of those who emailed and called when we got the results back earlier this week and we were a little down. You all are so awesome to us and we are so grateful. God Bless you all.

God Bless Caleb!!

Tuesday, November 18, 2008

Have had Better Days

Well...Caleb's bloodwork results came back today to check his response to the second Tetanus shot to see if his immune system is working. Unfortunately, there was a low response. Brian and I are both upset and feel like the wind has been taken out of our sails. I honestly think this is one of the 'lower' days we have had in awhile! So needless to say it has been a very emotional day.
I was able to ask Dr. Markert a couple questions today: 1. What next? and 2. Do we need to start worrying that Caleb's immune system might not ever respond?
First, there has been enough of a time lapse per the transplant protocol that Caleb can get another Tetanus shot. So thanks to Ellen (Caleb's AI fellow in Pittsburgh) who got the shot ready, my Dad (who picked up the shot in Pittsburgh and brought it to our house), and Angeline (Caleb's nurse who stayed over to administer it); Caleb got his 3rd Tetanus shot today. Thank you all for making that happen on such short notice. So hopefully the third time is a charm. Second, she is optimistic that since he was able to get off his IV nutrition that maybe that means his immune system is trying to work-but she cannot provide any guarantees. She also said she is not any more worried about his lack of response, however she says she will always worry, as she does with all her kids, until there is a response.

So please I am asking everyone to pray hard for Caleb and his Immune System and that he does get a response and that his Immune System starts working!

God Bless Caleb!!

Saturday, October 25, 2008

UPDATES!

Couple updates for all of Caleb's fans:

Immune: Well we will be checking Caleb's immune system next Monday. I just got the go ahead from Dr. Markert to draw his blood on Monday to see how he responded to his second tetanus shot. We are praying really really hard that the blood work shows a response. Unfortunately, the blood results usually take about three very long weeks to come back...so stressful of a wait. We were hoping to maybe have had some results back sooner (as always); so if the results showed function maybe we would have gotten the go ahead to see the grandparents at their homes on Halloween, but maybe next year.

Bathtime: Okay so Caleb was sponge bathed the whole time he was in the hospital and we continued to do that when we first got him home until we figured out a method to try to protect the IV from water. We use Saran Wrap press and seal over his dressing-works pretty good. Anyway, he did not like sponge baths (as all the nurses from Duke and CHP will tell you) or baths in an infant tube. He would cry from the point he got in to the point he got out. At times he would get so upset, he would turn blue, vomit (which makes is a whole other issue with a feeding tube and a Nissan Wrap and I will spare everyone with the specifics). His therapist said it is probably part of a fear of something new and due to his sensory issues. HOWEVER, I decided a couple weeks ago to put him in a regular tub. It definitely took some getting used to, but I am happy to say he loves it now. Now he cries when you take him out. I have pics and I will post them soon.

Therapy: He has not really crawled since the last post. We just signed the releases to get PT and OT in here so hopefully they can work with him and get him a little more active and mobile. Caleb walks with support, therefore, I am wondering if for a little while if it would be beneficial for him to have a child's walker to give him some independence until he is able to walk without support. As far as eating...he a couple times has put a fork or spoon up to his mouth on his own. Once or twice he has managed to get a small bite in his mouth, but he doesn't know what to do with it at that point and starts to gag. We have been told by his speech therapist to only let him feed himself and that we should not feed him as forcing food upon him may make him regress with his process. So when Brian and I sit down for meals we put Caleb in his highchair at the table and let him play with his food and do with it as he wishes. Even if he puts his hands in his plate, this is a huge hurdle for him as he didn't even used to do that. We are still trying to figure out what is the best way to 'communicate' with Caleb. We do sign language, pictures, and oral communication and we are trying to figure which one of these three is the best way to bridge this communication gap. However, I did catch him today holding an index card that has the ASL (American Sign Language) alphabet on it and while holding it he was pretend signing with the other hand and babbling when 'signing'. SOOO maybe he will do okay with ASL. After todays events I have been signing like crazy with him.

Insurance: Caleb's doctor at Duke, wonderful Dr. Markert, filed an appeal on Caleb's behalf (as weird thing is I cannot file an appeal as I am the mother - tell me that is not messed up) to petition for more nursing hours coverage and to make the insurance company cover his Synagis shot. They have denied his Synagis shot (shot that protects him from a very bad respiratory infection, which can be life threatening, called RSV). I also heard back from Governor Manchin and Senator McKenzie and they are both inquiring certain agencies regarding the issues we are having with Unicare. I contacted more individuals but these two responded quickly and are already being proactive in regards to Caleb. The other individuals I have contacted have chosen to ignore my emails, phone calls, etc. So needless to say if they are up for re-election they will not be getting my vote.

Nursing: Well, I know some of you are aware but for those of you who are not, we had to let go of one of our nurses. We just need to have someone who is here for Caleb and Caleb only, without drama, lies, saying/doing questionable things in front of Bri, myself and our parents, etc. We are fortunate enough to have a nurse now that we thought at first was only going to be able to work 1-2 days a week, because she did not want to initially leave her other job. However, we lucked out and this nurse is now on Caleb's case full-time (8 hrs 5 days a week), as she wanted to leave her other job and work with Caleb after spending time with him for the first couple days she was here. (Maxim is in the process of getting more nurses for this case.) She is VERY competent and has experience in the PICU and I feel more comfortable that she will not 'flip' about the smallest things-like we have dealt with. She is also really knowledgeable regarding therapy and is very involved when Caleb's therapists are here. I hope that we can continue to get more competent nurses like the one we have now.

Well, Brian just got home from work so I am going to end this update here. Now that we have a nurse I will definitely be able to update more frequently! So check back soon. Also if you want to be notified when an update is added to this blog, you can become a 'follower' by following the 'follower' link on the left side of this page and signing up to be notified!

Thanks again to all for checking in on us! God Bless you all!!

God Bless Caleb!!

Tuesday, September 30, 2008

So Amazing!!

Okay so it's time to brag! Brian, Caleb, and I were hanging out on Sunday and Brian and I were sitting there talking when we both noticed Caleb started to CRAWL!! We were in shock! We didn't yell while he was doing it, as one of his many sensory issues is an aversion to loud noises. So when he does something like that you have to be careful how you react - no loud applause or YAYS, but he knew it was something great because when he was done he sat up and gave Bri and I the biggest smile. It was awesome, we both got really emotional. We knew someday that he could possibly crawl, but didn't think he was going to do it this soon. He hasn't done it again since, but we now know he can do it!

Also, Caleb got his tetanus shot on Thursday. Poor nurse Angeline - sometimes I think it is harder on the nurse! He also had the last dose of his Immunosuppresion medicine, Cyclosporine, last Wednesday. Dr. Markert and I were emailing back and forth last week and she is wondering if the fact that he was still on the Cyclosporine when he got his last Tetanus shot may have not allowed his body to react well from the shot. She said that since he was still pretty much on the Cyclosporine for this shot too, she is not sure if his body will react from this Tetanus shot either. I guess we will find out in a month when I draw his blood. Remember, this is still a pretty new procedure, the transplant, so it is still a learning process for Dr. Markert too. She said that in the future, she will probably not give any kiddo the Tetanus unless they are off the Cyclosporine. She is amazing. She was also very excited about Caleb crawling.

Caleb continues to do well with his therapy sessions. We are trying to get him to take stuff by mouth. He surprised me yesterday. . . I always put food in front of him just in case he may want to try it. This is even a big step for him too as he used to not even tolerate a plate with a couple items of food in his 'area' due to his sensory issues. But yesterday he took a couple of those cereal puffs that disolve in his hands and placed them in his mouth. Again, I had to act like it wasn't a big deal but WOW. I immediately called Brian on his cell phone and told him. Once Caleb put the cereal in his mouth though, he didn't know what to do as this is the first time he has done this ever in his life. Who knows when he will do this again though, as we have been told repeatedly that kiddos like Caleb with severe sensory issues may have a day like that and then it may be AWHILE until they do it again. But I am so glad we had that day! I truly believe the more we can let him 'control' the feeding situation the better. I guess we will have to wait and see.

I am in the process of trying to get help in regards to Caleb's insurance coverage for nursing and for billing. We just found out we owe $500 more to Duke when they have already billed over 1 million . . .and that is Duke alone ....who knows how much Children's bills will amount to. But I have been in contact with Governor Manchin, Congressman Mollohan, and all the senators offices so hopefully they will help us with this as it is getting overwhelming.

Well I have to go give Caleb a feeding bolus. Have a great day and thanks for checking in on us.

God Bless you all!!

God Bless Caleb!!

Tuesday, September 23, 2008

TPN or No TPN?!?!

So far Caleb is still off his TPN (intravenous nutrition). His blood work since we took the TPN away for the most part looks good. His body is not maintaining his protein level so we will probably need to add a supplement to his diet until he can manage that better. I, for now, am only drawing his blood once a week, unless he is symptomatic then I will draw and check his levels. I still have to flush and change the cap on the IV three times a week but it is definitely better than accessing that thing daily and hooking stuff up to it daily. He still needs that central line for his IVIG (fake immune system) infusions, so we cannot get rid of the line yet.

I talked with Dr. Markert and asked her if Caleb still needs the monthly RSV (bad respiratory infection) shots this winter and she, Brian, and I all agree that he should get it this winter, due to the immunosuppression. He will also be getting his tetanus shot tomorrow. Let's hope he responds to this one better.

Caleb did great this week with his therapy sessions. He is so amazing. He has now figured out how to get up on both his knees and hands, now we are just praying he starts crawling soon! This is unfortunately another delay due to his LONG stay in the hospital but we are amazed by this tough guy daily. He is overweight so we have cut his caloric intake from his formula (as he is still getting all nutrition via his g-tube/feeding tube) until he gets more mobile. Hopefully, he gets more mobile soon, so he can start being more independent and so he can start to burn more calories. We all continue to learn more sign language so that will help with the communication process.

Here is the video I promised a couple posts ago sorry, with a couple newer pics attached. Enjoy! OH a clarification on the gowns, masks, etc.,as people ask why some people are wearing some things and some aren't. Everyone except Brian and I wears a mask. The doctors philosphy is whatever we have been exposed to Caleb has already been exposed to. However, if either of us come down with something new then we would stay somewhere else if really bad or mask if not as bad. All people visiting except for the great grandmas change into clean uncontaminated clothes once they get here so they don't need to gown. Just a clarification as I know it may be confusing when you see the slideshow. Again enjoy! Thanks for checking in on us!



God Bless Caleb!!

Friday, September 12, 2008

Happy Anniversary Caleb!!

Happy Anniversary Caleb!! Today is Caleb's 1 year anniversary of his Thymus Transplant. We continue to pray that it starts to work and give Caleb an immune system. Keep up the good work Caleb!!
God Bless Caleb!!

Monday, September 08, 2008

Two Big Updates

Well two big updates.

1. Tonight is Caleb's first night off TPN (IV nutrition) and he is on total gut feeds via his g-tube(feeding tube). We are praying that Caleb can tolerate this change and not run into any issues like when we tried to get him off TPN before. Nervewracking and exciting.
2. Tetanus response: Well it wasn't the results we were hoping for. Dr. Markert let us know today that Caleb had a small response to the tetanus and she suggested doing another shot(two months after origional was given-so around the 20th of this month) and then doing lab work a month after the second shot is given and see if there is a response. She said some of these kids may have to do up to four shots to get a response. So. . .I guess we will see what happens as far as a response to the next tetanus.
Thanks for checking in on us!

God Bless Caleb!!

Thursday, September 04, 2008

New Link at Left


Just an FYI. I added a new link (at left) . It is a new article on Duke's website regarding Caleb's awesome Dr., Dr. Markert, and her work saving babies like Caleb.
The picture at right is a picture we were fortunate enough to get of Caleb with Dr. Markert while we were at Duke. God Bless you Dr. Markert and your amazing team! Keep up the good work!

God Bless Caleb!!

Tuesday, September 02, 2008

A Walk a Little Further from Home

Brian, Caleb, and I were suffering from extreme cabin fever...so we did it!!

We left the house and went further than a block from our house.
We went to Oglebay for our nightly walk. We were all so excited on the ride up to the park.

Once we got there, we got out, straightened out his IV and feeding tube and we were on our way.

I have to admit, I got choked up. So awesome to do something like that with Caleb. He go to see deer, huge trees, the big fountain they have in the lake. It was so nice to be in a different area. There park was not crowded at all. There were only one or two other people on the path so we were able to pull the stroller over to the side and keep him at a safe distance from other people. We liked it so much we went back two days later. We had a ball.


I hope you enjoy the pictures we took. I know a couple look a lot alike, but we were so excited we had to take pictures!!


A couple side notes:
  • I drew bloodwork last Tuesday to see how Caleb reacted to his Tetanus shot. The results can't come back soon enough. It may be up to a month before we hear anything. So please pray hard that his immune system reacted well.
  • Caleb is now up to (ARE YOU READY?!?!) 80 mls/hour continuously on his gut feeds that are being given through his g-tube (feeding tube). If all goes as planned (again please pray hard for this too) Caleb would have three more increases on his feeds (and 3 more weans on his TPN -IV nutrition respectively) and then we would try to see how he does without the IV nutrition. This 'big switch' could happen at the earliest on the 8th. So please pray hard that he gets there with no problems and that he tolerates it well as the last time we tried this Caleb was life-flighted back to Children's, went into cardiac arrest, and was in the PICU for awhile.
  • The therapists, Developmental and Speech, came and did there initial evaluations. No surprise that Caleb has a huge sensory issue that will need a lot of therapy. The speech therapist told us to hold off on trying to feed him by mouth as she believes she has to deal with his sensory issues all over before even trying to put anything in his mouth as this is sensory related also. We are going to get a Physical Therapist and an Occupational Therapist to work with him also. As they can work with him also on his sensory issues as well as some of his delays that were caused by being in the hospital for a year and a half. They are great girls and we are really excited for Caleb at how this therapy could help him.
  • As far as nursing and insurance - as many have been asking. The situation is NO better. I appreciate all the emails and calls and I am definitely heading everyone's advice. I just don't want this issues to overshadow Caleb's tough work lately and I want to keep this post a positive one.

I also have a video montage ready, but I had to show off the pics of Caleb at the park. What a great milestone for the little man.

God Bless you all!! Thank you for checking in on Caleb!!

God Bless Caleb!!

Wednesday, August 20, 2008

Are You Kidding Me

Okay so to continue on the nursing coverage issue:
The nursing company was starting to get their act together and had hired an RN. Totally different between an RN and LPN in home care as RNs are the only ones who are allowed to touch IVs. Due to the fact that we have never had an RN, as promised by the nursing company, I had to administer all of Caleb's IV therapies which is a daily task. He also requires different monthly infusions which require constant vitals and monitoring and once again no RN was ever provided for those. Nevertheless, it seemed like we were going to get some days of 16 hours of nursing coverage but not all just yet. It is a shame it took the nursing company 7 months to get at least a couple days of 16 hours of nursing care that he qualifies for. BUT, a big surprise happened two weeks ago. I got a letter in the mail indicating that the insurance company was going to pull Caleb's nursing care all together based upon their review of his nursing hours that were being provided and one doctor's comments who hasn't physically laid eyes on Caleb since he was about 4 months old and who knows nothing about him. Fortunately, Caleb's doctors in Pittsburgh received the same letter and called the insurance company and said they couldn't pull his nursing care because of his condition. After Caleb's docs submitted plenty of paperwork the insurance company did approve nursing care, BUT GET THIS, only for 8 hours 6 days a week. Caleb's doctors did try to get him the 16 hours that they believe he deserves but the wonderful insurance company believes that since we have been 'getting by' on the 8 hours that the nursing company has provided and because I can take care of the IV that Caleb only qualifies for 8 hours of nursing care 6 days a week. So I guess, first off who cares about that 7th day if I get sick the IV will take care of itself. Also, I am penalized for learning how to take care of Caleb's IV because the nursing company never staffed his case with an RN. Also, I guess they would rather me not go back to work, go broke, lose my house, and then when we have nothing MAYBE they will help. AMAZING!! ABSOLUTELY AMAZING!!

God Bless Caleb!!

Sunday, August 10, 2008

Labs

First, I want to thank everyone for the emails and comments regarding our nursing issues. The drama continues with that situation, how ridiculous.

Anyway, I couldn't post any sooner about the labs because SUPRISE been without a nurse since Monday. But the labs didn't look too bad on Thursday. So Caleb was scheduled for another increase in feeds and a decrease in his TPN on Saturday. We went ahead with that wean and stools so far don't look too bad (knock on wood). I am interested to see what his labs look like tomorrow. I should draw them around 11:00 and hopefully get some results tomorrow afternoon.

Speaking of tomorrow ...HAPPY BIRTHDAY BRIAN. We love you. Caleb and I are so blessed to have Brian in our lives. He is a wonderful father, husband, and friend.

I will try to post tomorrow about Caleb's labs but I am going to try to make Bri some dinner, and for those of you who know how well I cook . . .it may take a couple attempts. HAHA

Again, thank you all for checking in on us.

God Bless you all!!

God Bless Caleb!!

Wednesday, August 06, 2008

More, More, More

Okay . . . so I posted the other day that Caleb was signing more. BUT he actually signed it yesterday, probably around six times in a row, and knew what it meant as we were playing with his shape sorting game and I would hand him the pieces. When he wanted to play again he signed more. So touching!

Also, today Caleb sat up on his own around seven times in a row! So amazing.

Who knows how soon again he will sign more or sit up, but, we know he can do it. We are so proud of him. What an inspiration!

Well we increased Caleb's feeds up to 45 mls/hour and we may have to hold at that rate for awhile. Today Brian and I noticed that his stools were getting watery again. So far they are not frequent (if they get too frequent he may get dehydrated and labs may go really abnormal), but we don't want it to get to that point. I will be drawing blood in the morning to check how his body is tolerating the change too. We may have to decrease his feeds a little and go back up on the TPN. Not sure yet.

Okay, I don't want to be a drag but I have to post about this because it is my way to vent. Honestly, if I wasn't trying to go back to work to pay bills, I would get rid of our nursing care. Our nursing company has probably hired about eleven nurses. Seven out of the eleven didn't show up for their first day, and this continues to happen. The company calls me the SAME DAY the nurse is to come to the house to let me know she is coming and guess what - now show. One of the girls that didn't show up for four days in a row the company didn't even know that when I called, YET they wanted to try to send her back to the house a couple months later. One nurse that came in lied about her prerequisites and didn't even know how to take care of his feeding tube (pretty basic task for a nurse). Another nurses almost double dosed Caleb on one of his medicines on her first day if I wouldn't have caught her. Another nurse didn't show up for her second day and they couldn't find her and then they said 'yeah she is a little different'. As I have stated before Caleb qualifies for 16 hours of nursing care a day. We have never seen that! NEVER! We get about 8 hours now for about 4 days a week. So it is REALLY stressing me out lately. I do feel a little run down and very stressed because of this. Went to the doctor today for a bad sinus/ear infection and SURPRISE I have high blood pressure. I was one that always had below normal blood pressure. What gives?!?! Again, I don't mean to be a downer, but it's hard and such a continual disappointment that a service that is supposed to be there for your child and your family is still not being provided 8 months later. They guaranteed me when they took the case they could staff it. They can't get nurses to show up and the ones that do....they can't take care of him like they promised the company. I wish they could just pay me for the service they are not and have not been providing. I don't understand why it is this hard to get nurses to show up for work?!?! Do other families deal with this? I really really hope other families don't have to deal with the problems we have dealt with in regards to nursing. It is not fair and very disheartening.

Okay sorry for my ranting, but I needed to vent. I have been pretty upset today as I had another issue with nursing. I'm sorry, I am usually upbeat, but so disappointed with the nursing company and who they send into our home.

Okay got that out of my system. I will let you all know how his blood work looks either tomorrow night or Friday morning. OH YEAH new pictures are coming!!

Again, thank you all for checking in on Caleb. You are a wonderful support system for our family. God Bless you all!!

God Bless Caleb!!

Friday, August 01, 2008

Couple More Updates

Hello all. . .

Well here are some more updates on the little man:

We have continued to wean his immunosuppression drug and we will continue to do so as long as his skin and gut handle the decrease okay.

We have started the communication with early intervention (therapists) so hopefully we can start working with Caleb on feeding, speech, PT, OT, etc.

We are continuing to increase his g-tube feeds and decrease his IV nutrition. He is now up to 40 mls and hour on feeds! So exciting a little over an ounce.

He did get his tetanus shot so hopefully Dr. Markert will be contacting us soon to request his first functional blood work to be drawn. We are anxiously awaiting for that call.

Caleb is amazing me every day. His new thing is he loves yelling our dog Saba's name. I don't think Saba likes it as much though, poor thing. He also loves books. So amazing he will sit and act like he is reading for hours, really hours. He studies the books so closely. Yes he's a genius-okay I'm partial. HA HA

Okay, so I'm a little puzzled by the video camera. I am still trying to get videos from his second birthday. I am sure it is easy to do . . .I am working on it guys!! I did get another part for the camera, so we should be able to take tons of pictures of Mr. Photogenic. He will love that. I do have some older pics from May and June, so I included those below. There are a lot of close up shots in this group. We were trying to get a bunch of pictures at that time in regards to his cleft lip and nose repair healing status for his baby book. I will be adding more pictures once we get some new ones taken.

Well I continue to look for a job, if I had a nursing degree I could get paid for the care I am providing Caleb. Although I feel like I have a degree. Our nurse Amy, has said she is willing to work longer hours so I can go back to work. She is great - we will really have to work together to make a schedule work as she is still our only nurse. It is not like I really want to go back to work, as I am afraid how it will effect Caleb's development as we do a lot of therapy together every day and I do not want him to regress. I do not feel like it would be such a determent to his development in another six months or so, but we have a lot of bills to pay and the economy is not really helping Brian right now as he is a loan officer. I have looked at options of working from home, but they all seem like scams. I did find out today though if I get my first aid and CPR recertified I can get paid some money for the care that I provide Caleb that we are not getting through the nursing co. We are going to be looking into that - anything helps right?!?!?

Well all I am and so is Caleb very tired as we have a couple long weeks in a row. Take care everyone. Thanks for checking in. God bless you all!!

God Bless Caleb!!

Friday, July 18, 2008

Updates, Updates, and more Updates

First off, CONGRATULATIONS DR. MARKERT AND HER TEAM! The piece that was done on Good Morning America and on Nightline on Dr. Markert and her team was amazing. I am so glad that she and her group are getting the attention that they so deserve! You all are amazing and God Bless you all!! To read the story if you didn't see it , please visit http://abcnews.go.com/Health/story?id=5379863&page=1. What a wonderful piece, congrats again! I really hope soon that our government realizes that if immune testing was done at birth it would save a lot of lives. Yes these tests will be expensive, but if the tests are not done at birth most of these kids aren't diagnosed with DiGeorge until 6 months old or later. By that time insurance companies are paying for multiple medicines to try to keep these kids healthy while they are waiting for the transplant (i.e. our hospital bills for Duke Hospital alone, not Children's, are over a million dollars). So, it seems obvious enough that the cost of testing at birth is worth it. This transplant still is not approved by the FDA either, so I will definitely be and advocate in any way I can for Dr. Markert and her team to help get the immune tests done at birth and to help get this transplant approve by the FDA.

Well I wanted to share a couple needed up dates on our little man, or should I say big now (34lbs.-no failure to thrive now).

We finally got our hands on the tetanus shot and our nurse will probably give it to Caleb on Sunday. Then hopefully we will get our first functional immune test within a month. NERVEWRACKING!!

We took Caleb to see Dr. Frangiskakis (our PCP for now who is in Children's Hospital in Pittsburgh). We have to see her instead of our PCP here in Wheeling that we picked when Caleb was first born as he has many doctors who are involved in his care (neurosurgery, neurology, craniofacial, allergy & immunology, endocrine, urology, ENT, orthopedics,the doctors at Duke, etc.) and doctor Frangiskakis acts as our quarterback in regards to all of his care. She is awesome!! We had to see her because 1. Caleb is gaining weight too quickly and 2. we are going to TRY to start increasing his feeds and decreasing his TPN (IV nutrition). She decided to adjust his lipids (his fat content in his TPN) so he isn't getting so much fat in his IV nutrition and hopefully his weight gain steadies out. We have also began the scary task of decreasing TPN and increasing his g-tube feeds. This is scary as last time we tried this he was life-flighted back to Children's due to several electrolyte imbalances. But we need to see if his immune system is kicking in enough to allow his gut to handle feeds. WE have increased his feeds to 5mls an hour so he is now up to 20 mls/hr (almost an ounce). We will try to increase his feeds by 5mls twice a week. This will involve constant labs (I drew more blood today and Brian took it to the hospital) so we can keep an eye on his labs and we also have to keep an eye on his physical state. So keep your fingers crossed and say prayers that the transition goes smoothly.

Today is also Caleb's monthly IVIG (supplemental immune system) infusion. I started it around 2:00 and it takes about four hours to infuse. This infusion consists of frequent vitals (blood pressure, temperature, oxygen saturations, respirations, etc.) So he gets annoyed with this infusion quickly as I am always bothering him for vitals. He's a trooper.

Caleb continues to roll on his tummy more and more and yes he is up on his knees. Amazing.

We have begun to do more work on sign language with Caleb as he signed 'more' for the first time last week. So we got flash cards and we work on a couple a day. It took awhile to get to 'more' as you have to bring both hands together to sign it and Caleb has texture aversions, which means he does not like touching things (his own hands, you touching his hands, etc.) So it was so exciting when he signed 'more' last week and clapped his hands more frequent. Some days his texture aversions are worse than others. He may not want to touch anything and other days it doesn't bother him so much, but it really never seems to be a non-existent issue. This is more a part of his CHARGE syndrome than his DiGeorge Syndrome.

He is still not eating, but we are working on it. I have decided to let Caleb explore foods on his own. Therefore, we put some different foods in front of him and let him explore. This will suffice for now, however, Brian and I believe we need to bring a therapist in for speech and oral stimulation therapy. We will just have to convey to the therapist that she needs to be the first case of the day for her, she will have to wear isolation gear as everyone else, and she can't come if she is sick.

His skin is looking okay, scalp is the worst. Dr. Markert suggested an ointment to put on his skin to help control the dryness. She said that in Caleb's case in may take awhile for his skin and his gut (digesting feeds) awhile to catch up with his immune system.

Well for now that seems like enough updates...even though there are many more!

Oh also, our camera is broken again and so we didn't get any pictures of Caleb's second birthday. However, I did use our video camera, however, I am not sure how to transfer the stuff of the tape so we can view it other than on the video camera (OOPS) I'm trying. So as soon as I can get any pictures I promise I will post.

God Bless you all!!

Thanks for checking in on our little man!!

God Bless Caleb!!

Tuesday, July 15, 2008

Nightline

Caleb's Dr., Dr. Markert will be on Nightline tonight talking about the transplant she does on kiddos like Caleb. ABC at 11:30.

God Bless Caleb!!

Jen found the story on Dr. Markert on GMA's website

Jen found the story on Dr. Markert on GMA's website.

Per Jen's email:
Hey Caleb Fans-

If you have checked Caleb's Blog, the story that I saw this morning on GMA is on the website now. If you go to the link below there is a section in the middle of the page that says "Videos" and the top section is for today. About 3 boxes down there is a small orange "+" sign in a box. Click on it and it will open up more stories. Scroll down a few until you see a story titled "One Doctor's Miracle Solution" with a picture of a beautiful little girl. There you will find the segment from this morning and get to see the woman who so diligently fought for and cared for our amazing Caleb!! It was kind of cool to finally be able to put a face to the name of the woman who, with her medical knowledge and Caleb's parent's undying love and devotion, turned this boy's life around!! It was so cool when I saw it this morning and even more cool the second time around when I watched it on the web when I wasn't trying to track down Sarah.&nb sp; Boy do I sometimes miss those days from college when I could just yell down the hall to her to change the channel when something cool was on, HA!! HA!! I believe I understood them to say that there would be more on this story tonight on Nightline on ABC. I have my DVR set just in case!! God Bless you all! God Bless Caleb!! God Bless Dr. Markert!!

http://abcnews.go.com/gma

"One Doctor's Miracle Solution"

In God's Love-
Jen


God Bless you all!!
God Bless Jen!!

God Bless Caleb!!

DiGeorge Highlighted on Good Morning America

Good Morning everyone. I just wanted to share some information. I just got a phone call from my best friend Jen, who said that Dr. Markert was highlighted this morning on Good Morning America. They talked about the transplant that the immunosuppressed kids get, like Caleb. Jen believes they may discuss it again tonight on Nightline for all who are interested.

Thanks Jen!

God Bless Caleb!!

Monday, July 14, 2008

Exciting Immune System Milestone

Well we have reached a milestone in Immune development.

There is a point with all of the transplant kiddos when Dr. Markert decides to try to give them a tetnis shot (remember these kids can't get immunizations or it will kill them). So she tries the tetnis and then they will do the first 'functional' immune test a month after the shot. I know confusing, what have all the other tests been?!? They have just tested to see if the immune cells are actually coming in. Which they have been but now they want to see how well they are working. But you have to see how they react to something, hence, the tetnis. This is so exciting I remember even before Caleb had his tranplant that they talked about this shot and it seemed so far away, and its here. The reason why they do the tetnis before any immunizations is because tetnis is a bacteria (and only part of the bacteria) where immunizations are live viruses. So we are trying to get a pharmacy around here to supply the tetnis and then it will be administered at home. I am drawing some blood work in the morning for Duke (not a complete immune study-but some labs she wants before the tetnis is given).

Also, more awesome news!! Caleb has sat up on his own twice now. He is so amazing. He did it right before his second birthday. What a tough guy! And yes I have to say it again, he is so darn cute.

I have to keep this short as little man is getting up from a nap and once again, no nurses today.

Birthday video soon to come too!!

God Bless you all!!

God Bless Caleb!!

Saturday, July 12, 2008

Happy 2nd Birthday Caleb

Happy 2nd birthday Caleb!! We love you.
Pictures and video are soon to come.

God bless Caleb!!

Tuesday, July 01, 2008

Clinic on Thursday

Well the tentative plans are to head to clinic on Thursday so the Allergy and Immunology group can check Caleb's skin. Then the docs will decide if, when, and how to wean his cyclosporine (his immunosuppresion drug).

We have not heard anything regarding our next set of immune tests but by our calculations it should be soon. It seems as when we finally get the results from one test they should be drawing for the next set of lab work. It lately has been taking approximatley 4 weeks after the labs are drawn until we hear anything, which makes it very nervewracking for us.

Caleb went for another walk tonight and loved it. It is so nice to take him outside and to go up and down the street. Yes, it is nervewracking as we have to keep ourselves away from anybody, but we get to see some of our neighbors on their porches who are able to talk to Caleb while we our out on the sidewalk. However, today he didn't have his hearing aid in for the walk so I am not really sure he heard what our neighbors were saying to them, oops. But I think it is great for him to see different faces and feel the fresh air. He continues to walk while he holds our hands. So amazing and he is able to stand up while leaning on our coffee table. So awesome.

I can't believe he is going to be two. Wow!! My little boy is going to be two. I thank God for blessing us with such an amazing little boy and letting us be his parents. He has made me such a better person.

God Bless you all!!

God Bless Caleb!!

Thursday, June 26, 2008

Clinic Appointment Rescheduled

Well we did not go to clinic today. As I was packing lastnight I went out to the car to clean the rain cover that we put on Caleb's stroller. We put this on the stroller to protect him from germs. However, it was in the trunk of our car and antifreeze had gotten all over it. YUCK! So I drove around lastnight and couldn't find one. So we thought it wasn't worth the risk of taking him to clinic without the cover. We ordered one online lastnight and hopefully it should be here sometime next week.

Caleb continues to hold saliva in his mouth we aren't sure why he is doing this. But loves to walk supported. He is so darn cute - hey I'm partial though!

Couple special prayers:
A good friend of the family passed away last week, Ed Shaw. His daugher, Lynn, has now lost both her mother and father within the past couple of months so please keep Lynn and both Ed and Dolores's families in your prayers.
My good friend Jenny (Jebbia) O'Dell's pastor was recently murdered and this has devestated her, her family (Darin and Keira), and the congregation. Please keep them all in your prayers as they deal with this senseless act.
A good friend of ours that we met at Duke sent me an email this morning stating the following: 'Most of you are aware of the young state trooper that was killed in Haywood County Tuesday. Trooper Shawn Blanton left behind a wife and son. His son, Tye, was born 7 weeks premature and has been in serious condition since his birth May 31st. I just spoke with my friend, Mark, who is also a NC State Trooper and worked with Shawn. He informed me that Tye was placed on life support this afternoon and is now very critical. The NC Highway Patrol is asking everyone they can possibly reach to please remember Shawn's son in your thoughts and prayers. If you feel led to do so, please pass this prayer request along. For the service, dedication and commitment that Shawn displayed and these folks show us every day, this I can do.'

So please keep all these families in your prayers.

God Bless you all!!

God Bless Caleb!!

Tuesday, June 24, 2008

Immune System

Hello all...

Update on the T-cells: Caleb has recently had two immune studies done. The first of the two showed that Caleb's T-cells continue to rise and we are at approximately 11%. This is very encouraging. However, in the last few weeks Caleb's skin has gotten increasingly drier and his stools were not normal. This led to another immune study. We still do not know the exact number,however, we do know, per Dr. Markert, that the nieve cells (the new T-cells) look good and they are not mine or the donor T-cells. They are cells that are going through his donated Thymus. Alright. We were weaning Caleb off of his immuno-suppression drugs, however, due to the skin and stool issues, we had to increase the dose and stop the wean. We are going to see the docs in Pittsburgh on Thursday and then they will report to Dr. Markert what they see visually.

Update on Oral skills: Well we recently got the go-ahead to start feeding again since his sickness with the pancreatitis. Not going so well. Not only will he not eat but he is now holding his saliva in his mouth. Not only is he doing this at meal-time but he is doing ot also when he is not eating. Not sure why he is doing this. We are going to stop in and see our friend Matt with craniofacial while we are up at clinic on Thursday.

Other updates: Well our little man is starting to like tummy-time more and within the last few days is trying to put his legs underneath him. In addition, he know will take steps while we hold his hands. Great progress for him!! We also have gotten enough courage to take him for walks in the neighborhood. Of course if anyone comes near him I go the other way (NO JOKE! :) )

We still do not have the nursing care promised to us when we left the hospital back in February. Very disappointing. We are also fighting for his disability checks. I have literally called our state senators and govenor to try to help us expedite the check delivery as they are now a month behind with this month's check. How wonderful. You have a disabled child, one parent can't work, bills to pay, and the state takes their time helping you. They now promise me it should be here in another 10 days. It is just shocking to me how hard you have to fight to get a special needs kid the help they deserve.

Okay enough of my ranting...just been a little stressed lately.

I will post Friday to let you all know how clinic went.

Love you all and God Bless!!

God Bless Caleb!!

Friday, May 30, 2008

Hospital Stay

Well we had to take Caleb to the hospital last Friday because he seemed to have a stomach ache. After they ran some tests, they found out Caleb had pancreatitis. One of your pancreatic enzymes, lipase, should be 200 and his was 10,000. So needless to say, he wasn't a happy camper. They kept him in the hospital until yesterday. His level is still high, 1800, but it is better than what it was. He isn't allowed anything by mouth or feeding tube until he feels better. Thanks to Aunt Jen for sending updates and thanks to all for your prayers.
Also, we still haven't heard anything regarding the immune tests so when we hear about that we will post too.
God bless you all!!
God bless Caleb!!

Wednesday, May 21, 2008

Advice Needed

Hello all....Sorry for the delay in posts.

So Caleb is continuing to recover from his cleft lip & nose surgery. We have to massage his lip so it desensitizes and hopefully prevents it from scaring.

The reason why we are posting tonight is to try to get as much advice as possible. As most of you know, Caleb spent the first year and a half of his life in the hospital. Therefore, he was in a crib and is behind in his physical development. Caleb is almost two years old and still does not sit up on his own, crawl, drink, or eat baby foods. We know that he is delayed due to living in the hospital and this can effect the sitting (however, he can sit up unsupported for hours). He just can't get himself up. He also has CHARGE in addition to DiGeorge (the immunodeficiency) and we have read that CHARGE delays/effects eating habits. He ate completely by some type of tube (NG, Mic-key button, etc.) until about two months ago when we were given the go ahead to try baby foods. He still gets all of his nutrition via IV and we are doing continuous feeds through his Mic-key to keep his LFT levels down (Liver function levels - keeping his gut from going to sleep). We try to feed him and he will try to prevent anything from going in his mouth. Then, once you get a drink or food in his mouth he will not swallow. We know he has an oral aversion, and know there is not a quick fix. Here is our dilema...we cannot bring early intervention yet into the home, as it is not worth the risk of what we could be exposing Caleb to (i.e. cold, flu, etc.), so we are turning to our fellow bloggers for any advice on therapy that may have worked for them in any of these areas. Please post any ideas that you may have, we would definitely appreciate it.

Saturday, May 10, 2008

Clinic Update, Immune Bloodwork, Pics, and Prayers

Hello all. . . we are trying to get more updates on the blog more frequent. Brian got over his sickness so it is me and him again working as a team again to take care of our little man along with a nurse that comes for 8 hours 5 days a week (however-we still should have nursing care more often). But Brian and I do pretty well as long as both of us are healthy.

So Caleb went to cleft-craniofacial clinic last week for a checkup. Unfortunately, do to us being stuck in traffic for a very long time we missed Dr. Losee, but another surgeon saw him and said the healing process looks good. Just keep up the care we are doing. We also talked about speech therapy and audiology therapy with our friend Matt at cleft-craniofacial and Caleb will probably need some therapy but we will have to wait until we get more immune function before Brian and I feel comfortable brining therapists into the home.

Which brings me on to the next topic. We did have blood drawn for immune studies. So pray hard that his T-cells (Immune System) is continuing to grow. As soon as we know anything we will post.

As promised pics.



On a final note, please keep our little friend Jacob Rice (Buddy) and his parents, Nick and Jessica in your prayers. As Jessica's mom said: 'little Buddy hatched his wings and flew to heaven to be with God' on May 9th. We met this wonderful family during our stay at Duke. Please keep them in your prayers. We love you all!!

God Bless you all!!

God Bless Caleb!!

Friday, May 02, 2008

Cleft Surgery is Done

Hello all...

The cleft surgery was last week and so far so good. It was about a seven hour surgery. Dr. Losee was not happy with the nose but was happy with the lip. He is a bit of a perfectionist...we love him and his group. We knew that this would not be the optimal repair as Caleb couldn't wear his mouthpiece after he coded at Duke and was on the ventilator for so long. He looks cute and very different!! We were actually only in the hospital for three days which is very odd for us. Usually we are there for the long stays. Hopefully those long stays will become a thing of the past. So he is still pretty swollen so as soon as the swelling goes down along with the black eyes I will post some pics.

So we still only have 1 nurse for five days a week, she is awesome. Not to happy with the nursing company still as we are qualified for 16 hours of nursing care a day for 7 days a week and they have had 3 months now to staff this case. We have had two nurses not even show up for their shift, one nurse who did not tell the truth about her qualifications, and another nurse who made a med error. So needless to say I would not recommend this nursing company. I would totally drop them and switch to another company but I don't want Caleb to lose the nurse he has now.

There are many of you who continually send wipes, diapers, etc. to our home. I wanted to give a little tidbit of information as I know many moms who read this are big into which companies help those who have children with special needs. I had posted that a certain company was going to donate hand sanitizer to Caleb. . .well they pulled there donation off the table. However, I did find another company that is willing to send something. If you ever need hand sanitizer and can buy Avant please do so. They were very willing to help out. Yes it may be a one time shipment but they still sent something, which is more than I can say for other companies. It is very disappointing when you call many well-known companies who would probably not be financially burdened by a donation that are not willing to donate to such a case. It seems to me, from our experience (i.e. Windcore, Panhandle Restoration and Cleaning, Jamison Carpeting, Cavi-Wipes, and you all) that the littler companies and individuals, who will bear a financial burden, are more willing to donate. Excuse my rant, but it just seems like something is wrong with that picture.

So it was a year ago we were arriving in Durham, NC to get Caleb a thymus transplant. It was not too long after we got there, May 10th 2007, that Caleb got sick and coded and was placed in the PICU on ventilator. I remember mothers day last year. . .my first mothers day and I was praying that Caleb would make it and we would have many more mothers days together. I remember all the other moms in the PICU waiting room that were spending their first mothers day the same way I was. I think of you all and your little ones often and you continue to be in my prayers. May this mothers day be a better one for us all!

In case I cannot get another opportunity to get back on in awhile. . . I wish everyone a Happy Mothers Day.

God Bless you all!!

God Bless Caleb!!

Monday, April 14, 2008

Immune Testing Bloodwork

Hello all.....READY FOR THE NEWS.....

CALEB HAS 6% T CELLS!!!

We are absolutely ecstatic here in the Hlebiczki household!!! wooohooo yeehawww

The percentage definitely has to increase but we finally have something!!! WOW!

I am crying typing this...I am still very nervous as I am every day as it is very scary to try to keep him from getting sick...but to know that there is something there is just amazing. I was so fortunate to talk to Dr. Markert today and she said she was smiling when the bloodwork came back and she actually saw T cells in his blood. HOW AWESOME!!! I could hear her excitement over the phone and new the news must have been good. I cannot thank that woman and her group enough for doing this transplant for Caleb. She and her group are truly amazing people. Thank you all and God Bless you!!

You all are amazing too....we continually get wipes, diaper genie refills, diapers,etc. on our porch daily. WE have been blessed to have you all in our lives. I cannot wait until the day when myself, Brian, and Caleb can personally thank you all face-to-face. God Bless you all. You are our angels. We love you and thank you.

God Bless you all!!

God Bless Caleb and his T cells!!

Saturday, February 16, 2008

Liver seems to be producing Protein

So the liver seems to be producing protein...so where is he losing the protein is the question.

Well . . . I did not get to post about something they found before we left Duke. About two weeks before we left Duke they found a questionable mass in Caleb's chest. They tested for different types of Cancer and do not believe it is a cancerous type of mass. They are wondering if it is a lymph fluid build up. Possibly due to a lymph vessel getting nicked during one of his surgeries and leaking out into his body. So. . . when we left Duke they suggested we keep an eye on this mass to see what happens. Well now that he is losing protein, Dr. Markert is wondering if he is dumping the protein into his mass. Dr. Markert suggested that they do another x-ray to see what his mass looks like. I haven't heard back from any of the docs at Pittsburgh yet so. . . we will see. His Albumin gets checked again on Monday so we will so how that level is. I hope and pray that it stabilizes and starts going back up.

God Bless you all!!

God Bless Caleb!!

P.S. I will be adding pictures to this post hopefully later on today.

Thursday, February 14, 2008

Albumin level is low

So his Albumin level, protein level, is low. This level continues to drop and we are not sure where he is losing his protein. So far it doesn't seem to be that he is losing it in his urine or stool so the last thing to check is to see if his liver is making enough protein. I hope and pray that it is and that maybe we just have to re-run the urine and stool tests and find something there. We should get the results regarding the liver sometime this afternoon. A big concern with this level dropping is that he could third-space (send the fluid that should be going to his vessels out to his tissues, lungs, etc.). So we are keeping a close eye on him making sure he doesn't start to swell. I have been talking to Dr. Markert (the Dr. that did his tranplant-love that woman) to see what she thinks. We are communicating via email regarding his labs so maybe she will be able to provide some insight also.

God Bless you all!!

God Bless Caleb!!

Wednesday, February 13, 2008

New part for the Camera on its way

Hey all just a quick update. I found out what is wrong with the camera and a new part is in the mail. YEAH it is so exciting...I will be inundating you all with pictures very soon!! You will be shocked.

Friday, February 08, 2008

No UTI but some abnormal labs

So we are still trying to get settled in here at home. We finally had Christmas this past weekend. It was so nice. Caleb got more toys-imagine that. His grandparents and all his aunts and uncles love to spoil him. Thanks everyone.

I wish I could send thank you cards out to all of you for your generous gifts, cards, emails, etc. I am just so very busy and that is no excuse. Thank you also to all of our friends at Xerox (where Aunt Jen works). They sent Caleb so many wonderful gifts: clothes, diapers, stuff for his crib, etc. That we really needed! Thank you all. It amazes me how many wonderful people we have been blessed by that have come into our lives in the past 18 months. Thank you all.

Caleb did not have a UTI, but is having some abnormal labs. Some of his levels are not within the norm and hopefully we can get some of them stabilized with his new TPN. We will have to wait and see. We have clinic appointments next week so maybe we will learn more then. They are also planning on doing his next set of lab work for Duke while we are there so PRAY HARD FOR TCELLS.

On to nursing care. I think we were spoiled by the wonderful nurses at Duke and Childrens. We do have 1 nurse, who comes 8 hours a day monday through friday, and she is very good. However, I hang his IV medicines at night, do his dressing changes, change his cap on his IV etc. It has been very hectic. The company who does his IV meds is pretty much worthless, they keep messing up his drugs and if it wasn't for Brian and I double checking what they send we could have had some big issues. We do qualify for 16 hours a day of nursing care, but at this time we are only getting 8 hours a day Monday through Friday. So needless to say, I have not been really impressed with that so far either. But Brian and I have gotten in to a routine and have been working hard to get a routine down together. It is a shame what we were lead to believe didn't happen. But what can you do-

Well Caleb is only down for a nap for a short time and I have to get his IV meds out of the frig, get some laundry done, and do some chores around the house.

Special prayers:
Friends of the family lost their baby girl Victoria this past weekend. Please keep the parents, the brothers, and the extended family in your prayers.
Another friend of the family's son was in a car accident a couple months ago and was paralyzed. He is slowly regaining some movement in his limbs. Please pray for his family that he will continue to make progress in his rehabilitation.

We love you all and thank you for continuing to check on our little man.

God Bless you all!!

God Bless Caleb!!

Tuesday, January 29, 2008

A Much Needed Update

Hello all....so sorry for the delay. . . we have been very busy to say the least.

Well we arrived back in Pittsburgh on November 27th. Caleb did have his palate repaired and the recovery was difficult. While he was recovering from that surgery the poor guy tore his Nissan wrap (the tightening of the tummy to help with his reflux). So needless to say we had to have the wrap redone. Then we finally went home after New Years-thanks to all who send cookies, presents, etc. to us while we were in the hospital for the holidays, once again you all are awesome.

We were home for about two days, 40 hours, and Caleb got really sick and was life-flighted to Children's he was hypoglycemic (low sugar), hypovolemic (low fluid volume), and septic (had an infection. He was fluid resuscitated twice and almost went into cardiac arrest he spent two weeks in the PICU and step down ICU. He fought back and recovered well and was able to come back home. He is now back on TPN (IV nutrition) and low volume feeds (just enough to keep his gut active). I have learned how to take care of the IV line-very nervewracking. We have visited the ER three times since we have been home in the last week and a half. Brian and I woke up this morning and we think he now has a UTI so I just put a urine specimen bag on him and we will send that to the hospital to see what that shows--poor guy.

So needless to say I am sure you can see why I haven't updated in awhile. I miss you all so much and cannot thank you enough for all the prayers.

Now that I hope we are somewhat settled (knock on wood) I will try to update more regularly.

God Bless you all!!

God Bless Caleb!!