We are dealing again with Caleb getting upset and not knowing why. It makes you feel, as a parent so helpless. I would love for him to be able to tell me what hurts or other things, like: what makes you upset, what's your favorite color, what's on your mind, hear you call me mommy, tell me how your day at school was, what do you want to be for Halloween, what do you want from Santa, what do you like to eat, what do you want to do, or just sit and talk with me. I would just love to hear the random thoughts on his mind. So next time when you get annoyed with your child asking 'why?' nonstop,or being a chatterbox, enjoy it. Be happy they can communicate with you. Don't take it for granted.
God Bless you all!!
God Bless Caleb and Camryn!!
Friday, November 23, 2012
Sunday, November 18, 2012
Parade and Tummy Trouble
So Caleb had a rough start to the parade but settled in and really liked it. He was smiling and everything. He didn't feel 'safe' enough to stand, so Brian and I took turns holding him and Camrynand he did great. It was emotional for Brian and I to see Caleb enjoy something that we knew he would love if he could get over the fear of it. We had a great time.
We went out to dinner lastnight and Caleb started to get really sleepy. At first we thought maybe he was tired, which is odd for Caleb. He cant tell us what's wrong, which is hard for us as we want to help him and him be able to tell us if he doesn't feel good or tired, etc. By the time our meal came, he was laying in my lap and fell asleep. When we were almost done with dinner he started dry heaving at the table. We quickly left and he had a tough ride home. We got him on the couch and he relaxed somewhat and got some sleep. He seems better as the day goes on, but we aren't sure what's going on with him. We were supposed to go to a bday party today for my best friend's daughter, but I didn't want to take him and possibly get everyone sick for the holiday. Could this be a tummy bug, GI bug, other GI issues, thyroid? We don't know. I just wish my lil boy could talk to me. Just to say 'mommy I'm tired' or ' my tummy hurts' or just to tell me what's on his mind. Yes I'm having one of those moments. It will be fine. Just wish I could do more to help him communicate.
God Bless you all!!
God Bless Caleb and Camryn!!
We went out to dinner lastnight and Caleb started to get really sleepy. At first we thought maybe he was tired, which is odd for Caleb. He cant tell us what's wrong, which is hard for us as we want to help him and him be able to tell us if he doesn't feel good or tired, etc. By the time our meal came, he was laying in my lap and fell asleep. When we were almost done with dinner he started dry heaving at the table. We quickly left and he had a tough ride home. We got him on the couch and he relaxed somewhat and got some sleep. He seems better as the day goes on, but we aren't sure what's going on with him. We were supposed to go to a bday party today for my best friend's daughter, but I didn't want to take him and possibly get everyone sick for the holiday. Could this be a tummy bug, GI bug, other GI issues, thyroid? We don't know. I just wish my lil boy could talk to me. Just to say 'mommy I'm tired' or ' my tummy hurts' or just to tell me what's on his mind. Yes I'm having one of those moments. It will be fine. Just wish I could do more to help him communicate.
God Bless you all!!
God Bless Caleb and Camryn!!
Friday, November 16, 2012
Signing
Hi all! We continue to work on signing with Caleb as we want him to be verbal but yet have the capability to sign when he can't get his thought across. We have been working on the ASL sign for I love you. not the easiest of signs. Lastnight before bed, Caleb signed it back to me and said 'I love you' when I signed it and said it to him. Truly and awesome moment. These are the little things in your life that mean so much and put things into perspective. I am so proud of my little boy. He is such a fighter I have learned so much from him, he has taught me so much. Thank you bubbers!
We are trying something big tonight, we are trying the Christmas parade for Caleb and Camryn tonight. Caleb watched parades on the computer while he was sick, but has yet to see one. I am not sure how he will handle this. It may be way to much, sensory-wise, but we have to try to give him that opportunity. He may not like the noise and crowd and we may leave as quick as we got there, but I hope he gives it a chance and sees a band or two. I think he will like it, if we can just get him to stick it out and see the parade. Wish us luck and keep him in your thoughts tonight that such a wonderful thing, doesn't scare him.
God Bless you all!!
God Bless Caleb and Camryn!!
We are trying something big tonight, we are trying the Christmas parade for Caleb and Camryn tonight. Caleb watched parades on the computer while he was sick, but has yet to see one. I am not sure how he will handle this. It may be way to much, sensory-wise, but we have to try to give him that opportunity. He may not like the noise and crowd and we may leave as quick as we got there, but I hope he gives it a chance and sees a band or two. I think he will like it, if we can just get him to stick it out and see the parade. Wish us luck and keep him in your thoughts tonight that such a wonderful thing, doesn't scare him.
God Bless you all!!
God Bless Caleb and Camryn!!
Wednesday, November 14, 2012
Immune Results
I just received the following email from Caleb's Immunologist, Dr. Markert. I think I'll let the email speak for itself.
Dear Sarah,
We reviewed the results in lab meeting – the T cell numbers are in the top quarter for patients after transplant. So I am very happy. There was one revision needed in the report. Hopefully I’ll have it tomorrow. I’ll call when I have the final report.
Louise
Isn't that awesome?!?
God Bless you all!!
God Bless Caleb and Camryn!!
Dear Sarah,
We reviewed the results in lab meeting – the T cell numbers are in the top quarter for patients after transplant. So I am very happy. There was one revision needed in the report. Hopefully I’ll have it tomorrow. I’ll call when I have the final report.
Louise
Isn't that awesome?!?
God Bless you all!!
God Bless Caleb and Camryn!!
Hi all, well as I am waiting to get this site more secure I am going to continue to update as I don't think it is fair to leave everyone in the dark especially with how you all support us.
Well Caleb's surgery is schedule for New Year's Eve. He will have his dental work done to fix his teeth that have been damaged to being on IV nutrition/reflux and from his grinding issues, they will do an MRI and Catscan of his ears to see what his anatomy of his ears looks like to see if he is a candidate for some type of implant, they will put tubes in his ears, and they are going to revisit his eye drainage issue, if we can get his occularplastic surgeon in the OR as well. It was noted about a year ago that Caleb does not have puncta, the tiny holes on the lips of your eyes. Everyone should have a total of four. One on top and bottom of each eye. The bottom puncta do the majority of the draining and the top do about 25%. Caleb has only one and it is on the top. Puncta help the eye flush bacteria away from the eye, so if you don't have puncta, you can get a lot of eye infection. His Occularplastic Surgeon, wants to go into the OR and take a look and just make sure that the puncta are not somewhere else in the eye, since his anatomy is a bit different (i.e. the cleft lip and palate). If they are there, that is great they will put stints in to help his eyes drain. If not, well, that could lead into a whole other surgery that would create a drainage system for Caleb's eyes into his sinuses. But, we won't know that until she can get a better look in the OR. So, I am hoping the other docs will be okay with her jumping in the OR for a bit to take a look and that the anesthesiologists think it is safe for him to be under for that amount of time. I will update when we know more.
Thanks for checking in.
God Bless you all!!
God Bless Caleb and Camryn!!
Well Caleb's surgery is schedule for New Year's Eve. He will have his dental work done to fix his teeth that have been damaged to being on IV nutrition/reflux and from his grinding issues, they will do an MRI and Catscan of his ears to see what his anatomy of his ears looks like to see if he is a candidate for some type of implant, they will put tubes in his ears, and they are going to revisit his eye drainage issue, if we can get his occularplastic surgeon in the OR as well. It was noted about a year ago that Caleb does not have puncta, the tiny holes on the lips of your eyes. Everyone should have a total of four. One on top and bottom of each eye. The bottom puncta do the majority of the draining and the top do about 25%. Caleb has only one and it is on the top. Puncta help the eye flush bacteria away from the eye, so if you don't have puncta, you can get a lot of eye infection. His Occularplastic Surgeon, wants to go into the OR and take a look and just make sure that the puncta are not somewhere else in the eye, since his anatomy is a bit different (i.e. the cleft lip and palate). If they are there, that is great they will put stints in to help his eyes drain. If not, well, that could lead into a whole other surgery that would create a drainage system for Caleb's eyes into his sinuses. But, we won't know that until she can get a better look in the OR. So, I am hoping the other docs will be okay with her jumping in the OR for a bit to take a look and that the anesthesiologists think it is safe for him to be under for that amount of time. I will update when we know more.
Thanks for checking in.
God Bless you all!!
God Bless Caleb and Camryn!!
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