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"

Thursday, June 11, 2009

Fun Times & New Items

Kenny Chesney Weekend
Wow! So we had a taste of 'normalcy' and loved it! We lucked out and got an early check in for the hotel for the Kenny Chesney concert. I actually found out the night before that we were granted an early check in so I told everyone we were leaving early 9 a.m. sharp and thank goodness because the traffic, as we could see from our hotel window, got REALLY bad about a half hour after we checked in. So it went well, we covered Caleb up and got him up to the room, I then sprayed the room down with Lysol and all our bags that had just been lugged through the hotel. Then we all relaxed and settled into the room. Who knew a hotel room could be so exciting. It was awesome. We had an AWESOME view of the point so that was great for Caleb that he could see stuff from the hotel window.
My Mom and Dad were great. They were great at wiping stuff down, they are just as used to it as Brian and I. Dad took Caleb for two walks down to the point too while we were at the concert so Caleb could see the boats and celebrations down by the Point. Dad was great he took antibac and didn't let people get close to Caleb. Thanks Mom and Dad. So Bri and I were off to tailgate to see some friends we haven't seen in years! We love you guys! We missed you so much! We finally got there and it was so much fun! After tailgating it was time to go in! OH MY GOSH! It was awesome!
We had soooooooo much fun. The lineup was amazing! The concert went so fast! Already excited for next year!
On the way home we decided to stop at a Sonic, since we don't have one around here, and eat lunch. This is also another big step as we took Caleb out of the car and sat at a table. We sat at a table were there was noone else around and wiped it down so we weren't 'contaminated' and then we ordered lunch. Another amazing time, yes eating lunch can be amazing. The reason why it was so awesome was, after we were done eating Brian and I ordered sundaes. We both hoped that maybe if I offered Caleb some ice cream, maybe he would take some and sure enough he did. He ate half the sundae, no joke! Yes, I got choked up, but who wouldn't right?!? So great! Great ending to an awesome weekend!

Immune System
The other day we got a phone call from Dr. Markert's head nurse, Stephanie. She wanted to let us know that some of the 'protocol' has changed. Just to remind everyone, the transplant Caleb got is still experimental, so the 'protocol' (criteria that is stipulated in the study to be handed over to the FDA periodically until the transplant is accepted as an approved non-experimental procedure) can change based upon new research. The bone marrow unit, which is a unit that conducts a lot of research on immunosuppression, just came out with some new findings. To make a long story short, based upon some of their new findings, they have changed some of their protocol. Once some of Dr. Markert's kiddos reach certain levels post-transplant, the bone marrow unit indicated that some meds should be temporarily discontinued to see how the immune system does on its own. These meds are bactram (the med that is taken to prevent silent pneumonia) and Immunoglobulins (the infusion that I give Caleb weekly for his 'fake' immune system that maintains his IgG levels). Then two months after these meds are temprarily discontinued blood levels will be drawn to see if these kids can't maintain their IgG levels (their immune levels that can fight bugs). If the IgG levels don't stay up, the Immunoglobulin and Bactram will be restarted. Well...Caleb was one of those kiddos that was picked to stop the meds, based upon some of his immune levels in relation with the new research. So...yes I am nervous, but I am anxious to see what his levels show in two months. Hopefully his immune system can maintain its levels without the help of the Immunoglobulin infusion that I gave him weekly. During my conversation with Dr. Markert's nurse, I did ask if his last labs came back and she said they did, Caleb's immune system yielded a 15 fold response. The one before that was 13 fold, so we are a little better. Their protocol would like each child to yield a 20 fold response, but once again, this is 'protocol' and Dr. Markert admitted that this level may be decreased to as she is not sure if 20 is too high of an expectation for every child to hit. I think she will get a better idea of what is a good response number when she sees how these kiddos that she has picked to temporarily discontinue these meds due without the meds for two months and where their response was at that time. While I also talked to Dr. Markerts nurse, Stephanie, I asked her if we could take Caleb certain places, and she said yes...just not places where there are a lot of people and where people would be hugging and kissing him. She indicated his baptism and church should wait, which is tough as we miss our church family! One more step towards normalcy?!?! We'll see...We are praying that Caleb's immune system can maintain its own levels over the next two months. This is a HUGE test! Hopefully his immune system passes!

Back to Dr. Archbald
So we are back to seeing Dr. Archbald. It was soooooo nice to see her and all the nurses! We got caught up on everything and she got to see Caleb for the first time, since he was about four months old when she wondered if he had an immune issue. She told us back then that he needed to go to Children's to be tested and she was right! So we finally got to see her again and it was sooooo nice! She noticed that his ears are pretty full of wax so she wants him to go to see ENT to get the cleaned and that after that she wants him to get a hearing test done as she is not convinced, like Brian and I, that he is as deaf as what we were told. The previous two hearing tests were done under anesthesia and by brain stem activiation. This would be the first 'real' hearing test. Also, while we go see ENT we are going to try to see Orthopedics (to get his hips checked) and Urology both of these specialties haven't seen them in awhile and she and Brian and I want to get a check-up and then hopefully, just maybe, not have to see some of these specialties in a very long time. We also made a group decision to take one more of Caleb's boluses away during the day to see if that will make him more hungry, so we can try to get him to eat more by mouth. It was so nice to talk about other normal things, potty training, time-out, etc., with Dr. Archbald. We all laughed as Brian and I know about IV's and a lot of extreme medical stuff, but some of the typical stuff we didn't know and we got to ask Dr. Archbald. It was so great to see her and know now that if need be we can call her and go see her than rather having to go to Pittsburgh every time. We missed you Dr. Archbald.

Well that is it for now as far as updates. I do have more, but this post is long enough. So check back soon!

God Bless you all!!

God Bless Caleb!!

Thursday, June 04, 2009

Kenny Chesney and a Hotel Stay

For years Brian and I have gone to see Kenny Chesney when he comes to Pittsburgh. Of course, when Caleb was sick and in the hospital we didn't go, but we are planning on going this year. It is an all day concert on Saturday and Brian and I are going to try to go see as much as we can. Needless to say, it is not like we can leave Caleb at home in Wheeling, an hour away, with a babysitter as there is a lot to take care of and we would feel safer if he was closer to us while we were at the concert. So we asked Caleb's transplant/immunology doctor, Dr. Markert, if she thought it would be safe for him to stay in a hotel, so he could be near to us while we are at the concert. She said it would be fine for him to stay in a hotel. So we are very excited! We were originally thinking about going Friday and Saturday, but with the limited vacancies and the expense of the available hotels, we decided to go up early Saturday morning and pray we can get an early check-in. Of course, I will go into the room before he goes in and spray it down with Lysol so it is 'clean' and then we will take our disinfecting wipes to wipe stuff down. Hopefully, the hotel will allow us to do an early check in so I can get the room 'cleaned' and him and my parents settled before going to the concert. My mom and dad are going to babysit while we are at the concert. I have to admit that I am a bit nervous as this is the first time he is staying somewhere other than in our home. But, I will feel more at ease knowing he is closer in case of any emergencies. We will try to stay 'clean' from the point we leave home until we check in and then Brian and I will shower when we come back to the hotel from the concert to disinfect ourselves, just like we do when we leave the house. As always, we will keep Caleb protected in transit via his rain cover bubble we put over his stroller. He doesn't cooperate with the wearing of a mask, so the rain cover works well also. This will definitely be a whole new experience, and probably nerve-wracking, until we get him settled and in the room. But maybe this can be one smaller step towards normal.
So right now I am in the middle of packing. I already have one suitcase for medical supplies only...wow!
I will let you all know how the experience goes ...

Thanks for checking in!

God Bless you all!!

God Bless Caleb!!

Monday, June 01, 2009

Pool, Friends, and Family

Hello all!

So a couple updates.

Caleb is amazing...have I said that before?!?! HA HA He is such a tough little guy.

First updates on some therapy:
So I am able to get Caleb to eat almost a half a jar at least once a day. It is not easy though. He is very timid when I bring the spoon to his mouth for the first couple bites. Then finally he seems to get into a rhythm and wants to eat! So I hope that that continues!

Walking: well I decided the other day to take Caleb outside to see if that would help in anyway with his distaste for his walking therapy. I put him on the sidewalk and held his hands and low and behold he started walking and far. He walked down to the end of our street and back and not just once a couple times. I was amazed. One of the cutest moment of the walk is when our friends who love Caleb just as much as we do drove by they would all say 'Good job Caleb' or 'You can do it!" So sweet! It is so wonderful to continually be surrounded by such wonderful people and friends.

Well Caleb had his first dip in the pool the other day and he loved it. The first day we tried it didn't go so well and he did not want to get it. So I tried the next day and he loved it. He also loves his daddy's hat more than his. So, I think we are going to have to get Brian a new hat!

Brian and I had the chance to go out last week and be surrounded by some more sweet and wonderful friends of ours. We all went to a local restaurant to have dinner, drinks, play pool, and watch the Penguins. We had so much fun! Thank guys it was so great to see you again. Hopefully, it won't be such a long span in between visits next time.
So Brian and I have decided that we are going to start trying to do some 'normal' things, leaving the house when safe and doing things with Caleb, without putting Caleb at risk. So we tried a picnic! I took Caleb to my Mom and Dad's house on Memorial Day (Unfortunately Brian had to work so he couldn't go) so he could finally be around all his cousins and Aunts and Uncles. Caleb has not seen any of them since he was first born. So this was an awesome day for us! Truly amazing. It was so cute to see how Caleb watched his cousins Hunter, Casey, and Sam play with one another. They were so great too at maintaining a safe distance from Caleb! Thanks guys! AHHH to be with my whole family....my parents, my grandma, my brothers and their wives, and my niece and nephews....wow words can't describe. I love you all so very much and have missed being a 'part' of the family. I am so glad that we did it and thank you all for being so great regarding Caleb's safety. Next time, I will try to relax more! I cannot wait for the day when I get pictures of you all holding Caleb and being right next to him. Come on bloodwork show good results so we can do more 'normal' things!

Thank you all for checking in on us!!

God Bless you all!!

God Bless Caleb!!