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!!

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!!

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!!

Happy 2nd Birthday Caleb

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

God bless Caleb!!

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!!

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!!

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!!

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!!