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"

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!!