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!!

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!!