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!!

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!!

Make an on-line slideshow at www.OneTrueMedia.com

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!!

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!!

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!!

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!!

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!!

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!!

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!!

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!!