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, May 19, 2009

Growing Lil' Boy

Well the title of this post says it all! Our little boy is growing up. So many updates:

Well where do I start...

Clinic Appointments:
Caleb finally got to see some of his doctors at Children's Hospital in Pittsburgh for much needed clinic appointments. Once again, we try to wait until the end of cold and flu season to hopefully limit the possibility of exposing him to nasty bugs. Yes, bugs and viruses will always be around, but if we can take him when the threat is a little less that is better for him. We got to see the new Children's Hospital. When we were driving into the parking garage, Brian and I gave Caleb a little speech and told him we didn't want any overnight stays at this hospital, just clinic appointments. The hospital is gorgeous. I am just really hoping we never see an inpatient room, we have seen enough hospital rooms.

So the first doctor we saw was Dr. Frangiskakis, pictured at right with Caleb. This is Caleb's acting Pediatrician. She has watched over Caleb from his first admission to CHP until now. She was so happy to see him. She said he didn't look like a baby anymore, that he looks like a little boy. We went through his development with her and the big discussion was his feeding orally or the lack thereof. She, Brian, and myself agreed that if Caleb does not improve with his feeding by the next time the immune tests come back, with hopefully good results, that we are going to do an in patient feeding clinic with him. The rest of the appointment went well. We noticed an ear infection which he was put on drops for. The unfortunate news is that Dr. Frangiskakis is leaving CHP to go back to her home state. We will miss her so much, she was so wonderful to Caleb and our family. We stayed with Dr. Frangiskakis as his PCP as she was acting as his 'quarterback doctor' - she kept all his specialist docs in Pittsburgh involved and updated as well as communicated with Duke. However, there is no time like the present to get Caleb back to his primary PCP here in Wheeling. We are ecstatic as this is such a big milestone for Caleb.

The next following week we saw was the Cardiologist. They haven't seen Caleb since before he went to Duke. The original plan that the CHP Cardiologists would do his open-heart surgery to fix his ASD's and his Triatrium when we got home from Duke. But that plan changed, as you all know, when Caleb went into heart failure when he was very sick at Duke. So, Brian and I were expecting a very long appointment. Brian and I were both very nervous about this appointment as Caleb has been having some lower heart rates. Surprisingly, they did an EKG and listened to him and they said that based upon what they heard they did not believe the risk of doing an ECHO, because of his immunosuppression and what he may be exposed to, was needed because they said he sounded great. The doctor indicated the lower heart rate is what a 'normal' heart should do. Yes his may be lower than others, but as long as he is perfusing well (blood is circulating well into his extremities) and he is not changing colors or passing out then it is all good. Then the bigger news, we don't have to see Cardiology for a YEAR! We were in shock. Really....we were expecting to be handed slips of this test and that test and to come back in two weeks. But nope, we don't have to see them for a year. Way to go Caleb!

So since we had some extra time, we thought we would stop by and see our friends at Cleft-Craniofacial to say hello! They were always so great to all of us. We were shocked when they said to go ahead and bring Caleb in and they would just go ahead and see him to (he was scheduled for a clinic appointment for the end of June). They are so great, they know how far away we live so they slid him into their schedule to see him for his repair check-up. His plastic surgeon, Dr. Losee, said Caleb's scar looks great. We asked him about a white spot on Caleb's gum-line. Dr. Losee indicated that is the scar from the palate repair and not to worry. He said the repair looked good and by what Caleb is trying to verbalize now he believes the palate repair will work well in regards to speech! WOOHOO What a day!

Feeding Update: I realized the other day that the current approach to feeding wasn't working. So I tried another approach and I am so very happy to report that I am able to get Caleb to eat about a half a jar of feed about twice a day. Never thought that day would happen. The bigger shocker was one night when I was feeding him at dinner, he looked thirsty, so I handed him a sippy cup, and he DRANK FROM IT! Brian and I were ecstatic to say the least. I hope that Caleb continues to feed well. The first bite always seems to be the toughest, but then he does better with every bite after that.

Girls Day:
I finally, after three long years, got to spend some quality time with my two great friends Jen Straub (white shirt) and Jess Tuschong (white and brown shirt). Most of you are familiar with these two blessings also. As Jen sends out email updates on Caleb and has updated this blog for me when I couldn't. Jess, created the page about Caleb on Facebook which kept hundreds of people updated also. These two girls have been awesome to Brian, Caleb, and myself throughout the years. They have done so much for us and they continue to do so. I was pampered by the two of them by a manicure and pedicure and lunch! It was so nice to see them. When we were hugging to say goodbye I didn't want to let them go. I love you both so very much thank you for a wonderful day! I had such a great time.

The following week, I was pampered by another friend, Alana, and got my hair done. Thanks Alana it looks great!

I love you girls! Thanks for the pampering it was so nice! Love you!

Okay so are you ready for the biggest update?!? Brian and I last week had enough of being shut-in and decided to take Caleb to the Oglebay Zoo. We were hoping that there wouldn't be many kids there as it was still pretty early in the summer and we lucked out. There was noone there. We were able to take the cover off the stroller, that we usually use to keep him in a 'bubble'. It was so much fun. When we walked out into the zoo. I almost broke down. But I held it together. We had the zoo to ourselves and it was probably the best time we have had in years. A highlight of the visit was we stopped at the concession stand to get a drink (which is a big step too because even this is a germ exposure possibility, but we wiped everything down) and the lady that was working the concession stand asked how old Caleb was and we told her almost three then she said 'what a healthy looking three year old'. She had no idea what those words meant, wow our child looked healthy! The only part of the zoo, we really couldn't do was the train ride, as there is no way to make that a 'clean/contamination free' experience. But we had a blast. We wanna go back, but we know that we lucked out that it was not that crowded. It would be nice if we could do more things like that for him. What a day! So much fun! We didn't want to come back home!

Thanks for checking in on us, sorry for the delay in posts, as you can see we have been very busy!
God Bless you all!!

God Bless Caleb!!


Jess Tuschong said...

I had a blast with you too and LOVED spending time with you...I can't wait to come back and do it again soon! :)

AWESOME news about going to the zoo!!! He looked SOO happy - that's great!!!! Good idea to take him on a weekday while there weren't other people around...I'm so glad you got out of the house! What did he think of the animals???

Love you guys so much!!! God Bless!!!

Chris B said...

Hooray, Hooray, Hooray!! So glad to hear all of your good news!! I think you should get that video to the zoo - besides the adorable pics of Caleb, you got great animal shots!! XOXO

The Fab Ford Fam said...

So glad to hear all the positive updates!!! Just brightened my day. Ben and I just watched your video from the zoo. He laughed along with Caleb at the funny birds. He's telling me now "I like Caleb Mommy". :) These boys will get to play one of these days.
God bless you all and God Bless Caleb!!!

xoxo Hannah

Ed Munoz said...

WOW!! Such great updates Sarah! Love the video of him at the zoo.

Eva Nichole said...

WOW!! Sounds like everything is going well.
Great day at the zoo too, amazing. You should try again in the fall when all the kids go back to school.
OR if your wish with the house cannot be granted ask them about a day somewhere like the zoo (I am not sure whatelse is out there) and if you could get it just for you and Caleb for a few hours (maybe a few places can do that for you a few hours at a time) talk to them about that it seems like something they could pull off, if Jon and Kate plus 8 can do it why not you guys.
Crystal and Eva

Jen Straub said...

I don't know how I missed that update, guess I haven't been on in a week or so. WOW!! Awesome!! Can't wait till we are all at the zoo together!! Haleigh just insisted to watch the slideshow like 4 times and said, "Caleb!!!!!, he's my Caleb, I love him". Pretty cute!! Love you all!!! Kisses to Caleb!! See you soon!
Love -