Thursday, January 14, 2010

Carter turned 4! (Oops, that was 2 weeks ago.)

My first baby turned 4 on December 31. He always tells everyone that his birthday is New Year's Eve. We tell him that everyone is celebrating his birthday. Things have been crazy as usual so I haven't had a chance to post about Carter's birthday. I truly cannot believe that my baby is 4. He is such a big boy, there is definitely no baby left. He brings a smile to my face every single day, even on the days when he is a challenge. He is smart, sometimes too smart causing him to think he knows best. This has manifested itself in a lot of back talk. He is very strong willed. This can be both a good thing and a hard thing. The amazing thing is he is just. like. me. He even shoots me the same glare that I was famous for during childhood (ok, sometime now too) and the infamous eye roll that got me into so much trouble when I was younger. He sure does give us a run for our money some days, but he is also such a love.

It seems that he has grown up so much in the past year. It seems like there is such a difference from 3 to 4. Carter is in his first year of Pre-K right now. He will have 2 years of Pre-K because of his birthday and the cut-off for Kindergarten. He loves school. He is very social, so inquisitive and loves to learn. I look forward to hearing the things he comes out with. I enjoy that he so enjoys learning. Sometimes he even teaches us things!

One of the things that has made me so proud of Carter is how caring he is and what a wonderful big brother he is to Owen. He loves that Little Man so much. He is so protective of him and loves playing with him (at least most of the time.)

Carter, I love you big guy, and I can't wait to continue on this wonderful adventure with you!

Now for some photos of Carter's birthday!

Mama and Carter celebrating his birthday at school!
Carter eating a cupcake at school to celebrate his birthday.

Mama and Carter playing with his new PlayDoh set from Nana B and Pater B.

Daddy carrying Carter's cake.

Mama and Carter as we sing Happy Birthday.

Carter and his cake.

Pappy feeding Owen some cake.

Carter's Handy Manny cake.

Carter's new remote control Lightning McQueen.

Yay, PlayDoh!

Carter playing with his Mikey Mouse matchbox set from Aunt A and Uncle J.

Mama and the boys, my mom and Grandma- Four Generations!

Wednesday, January 6, 2010

Miracles do happen.

We received wonderful news today at Owen's urology appointment. His creatinine level, which should be below 4 was 2.7. His CO2 level, which they would like to be at least 22 was 18. That level is lower because of an imbalance in the acid and base in his blood. Dr. Gazak said that is to be expected considering the amount of issues he has had with his kidneys. We are supposed to start giving him half of a children's Tums twice a day. Since they are chewable that may prove to be a problem, but we will see. This is such great news, his kidney function is great! Owen also had a renal pelvic ultrasound today. As the nurse was performing the ultrasound I was looking at the screen thinking to myself that his kidneys seemed to look a lot better, had a lot less black spots. I didn't want to get my hopes up or ask, I was so nervous. The nurse made a comment that she thought his kidneys looked good, but she sort of said it to herself. Still, I was afraid to ask.

We were moved to a different exam room to wait for Dr. Gazak. He came in with two sets of ultrasound photos and a smile on his face, saying "I think we have some good news." Owen's right kidney (the side that still has the stent in place) had no hydronephrosis at all. The left kidney had significantly less hydronephrosis (which shows up as a black spot on and ultrasound) than the ultrasound done in December. We are not facing ostomy surgery, Owen may not have reflux at all anymore. He may have a lesser degree of reflux on the right side. What we saw today shouldn't have happened. He shouldn't have gotten better this way, but he did. I truly feel like it is a miracle. Of course Owen is not out of the woods, but he is so much better off. We have so much hope. Owen will be having his stent removal surgery on Monday, January 18. Dr. Gazak will remove the stent from his right side and then do a VCUG to check for reflux. If there is still reflux on the right side and it is a low level of reflux, he will inject a medication called Deflux which would hopefully help reduce it further. The stent removal is an outpatient procedure. We are very much hoping that it goes smoothly and we receive only more good news.

Thank you all so much for your thoughts, prayers and support. It means the world to us.

Tuesday, January 5, 2010

Remember me?

It has been quite some time since I have even thought about blogging. Usually writing is something that really helps me. Frankly, for the past month plus I haven't even felt capable of writing. My emotions have been all over the place, things have been crazy and at times putting one foot in front of the other has been hard enough let alone forming coherent sentences.

Owen had his renal pelvic ultrasound at the beginning of December. Most of you have probably heard about it by now. I don't have the energy to rehash the whole thing, but it was not good. In short: hydronephrosis in both kidneys. The left side, the ureter is just too floppy and can't push all of the urine to the bladder. The right side, there is too much pressure and the valve is not working, causing urine to reflux into the kidney. It was a terrible conversation. Basically, the reimplantation surgery in October did not work. Dr. Gazak said Owen would likely need to have another bilateral ureterostomy. He was going to have to take him back apart. After asking a million questions and my mind racing with a million more that I didn't know how to ask, I asked when he would do the reimplant again. How long would he have the ostomies this time? Dr. Gazak told us that he has never seen a reimplant work after failing the first time in a patient with reflux this severe. He said the best option long term may be to reconstruct Owen's bladder using part of his bowel, making it large enough to allow the reflux to occur. That would mean Owen would have a permanent hole in his belly leading to his bladder, which would need to be cathed every 2-3 hours to keep his bladder empty. Horrible, terrifying, unthinkable. I couldn't even stomach the thought for a while. I thought of every stage of his development through the fog of this possibility. He will be ok, he will live a normal life, but it will be hard. No parent wants to see his or her child deal with a permanent disability.

While I was digesting information, Wes got busy researching pediatric urology to find the best hospital in the country. Children's Hospital of Philadelphia is #1 and Boston Children's Hospial is #2. He called them both. The Chief of Pediatric Urology at Boston Children's couldn't wait to review Owen's case. In fact we heard from him yesterday. Basically he wants to see Owen and run tests that he has already had. He also recommends holding off on ostomy surgery right now. Wes also talked to Dr. Gazak's nurse and Dr. Gazak has been thinking about Owen's situation and seems to feel the same way as of a week or so ago. Wes will be calling CHOP on Thursday to make an appointment there.

Today Owen had bloodwork done to check his creatinine and CO2 levels, which are indicators of kidney function. He was a champ! Tomorrow afternoon he will have another renal pelvic ultrasound, after which we will speak with Dr. Gazak about how things are looking and the results of the bloodwork. Needless to say we are very nervous. Like I said, after we have more information Wes will be calling CHOP for an appointment.

This holiday season has been a difficult one, but also a great one. It was great spending so much time as a family and with extended family. It was hard because in this past month I have digested the information about Owen's condition, perhaps at times become complacent about it. I mean complacent in the sense that I stopped thinking about it 24/7. I am still paranoid that he will get an infection, I still worry about him and his future. On the other hand he is a happy otherwise healthy little boy. When people are around him they can't help but smile. He loves life, which makes me love life. I guess what I am trying to say is that I know that no matter happens with Owen's bladder, no matter what they have to do to "fix" him, he will still be my Little Man. He will still live a happy life, and most importantly he will still be loved just the way he is now. Oh, this is just so hard. The ups and downs and all of the emotion involved with watching one's child experience the difficulty of a serious illness. Did I mention that I'm nervous?