Wednesday, March 17, 2010

The Other Man- A True Lifesaver

I love my husband and two boys more than anything. However, for the past 18 months there has been another man in my life. Not to worry, it is not a secret. I know I have expressed my love for him at least a hundred times. We all love him. I am speaking of Owen's urologist, Dr. Gazak, of course.

Last Wednesday I took Owen to the hospital for bloodwork that was ordered for Dr. Gazak in preparation for Owen's check-up this past Friday. It was the most calm I have ever seen Owen at the lab. Actually, the most comfortable I have seen him in any medical setting in quite a while. He has become understandable worried, even frightened, of medical professionals. If you are wearing scrubs or wielding a stethoscope does not want you anywhere near him. I was shocked and very proud of him.

Friday was Owen's first check-up with Dr. Gazak since the surgery in January that resolved his bladder reflux. He has been doing well, acting fine and perfectly healthy. Still, I could not help but worry about the results of his tests. It goes back to what I mentioned in a previous post about how difficult it is to wrap one's mind around such a huge change, even a wonderful one such as the huge improvement in Owen's health. Like I said, there isn't just a flip to switch to turn off the emotions that come with caring for and worrying about your child with a major illness, one that we thought would be a lifetime disability.

Dr. Gazak was right on schedule on Friday, which is fairly unusually given the amount of time he spends in surgery and the fact that he is a very gifted surgeon with quite a lot of patients. After a very short wait Nurse Judy came to take us back for and ultrasound. Again, Owen did much better during the ultrasound than he ever has. He usually cries and moves around like crazy, making it very difficult for Judy to get good pictures and measurements of his kidneys. This time he lay very still, taking a peel and stick Bob the Builder off of the wall next to him and putting it back over and over. He even talked to Judy, smiled at her and was very pleasant. She was thrilled that she didn't make him cry for once. As she was doing the ultrasound, I could tell his kidneys looked good. We talked about it as she looked and measured. There was a tiny bit of hydronephrosis in his right kidney (the side that took much longer to heal and led Dr. Gazak to believe that the ureter re implant had failed when he went to take the stents out back in November). It was a very small amount. She had to look for it, whereas before there was a ton and it was completely obvious as soon as she scanned his kidney. She was unable to find any hydro on the left side.

After the ultrasound she took us down the hall to an exam room. Dr. Gazak was standing right in the hallway getting ready to review the ultrasound films. He greeted Wes, Owen and me and asked how we were doing. He asked about my kidney issues. I said, "that is another story." At that point I was just beside myself waiting to hear his take on things. I said, "you tell us". We went into the exam room where he thoroughly explained the pictures of Owen's kidneys to us. I love that he is still so thorough in his explanations despite the fact that he knows how much I know about Owen's urinary tract. He knows I want to know it all. He said that the hydro on the right side was basically nothing, not to worry. He went on to tell us about Owen's blood results. His creatinine level was great, his electrolytes were great. The only level that was slightly lower than normal was his CO2 level. This is a level used to measure kidney function, however it is not as crucial as creatinine levels. The CO2 level can also be slightly low because diet. For instance, Owen is teething something awful (and drooling like a St. Bernard I might add) so he hasn't been eating as well. Again, Dr. Gazak said nothing to worry about. The only other thing of note is that his right kidney is about 1.75 mm smaller than the left one. He said this was because it had been the victim of more "insult" than the left. When that happens, especially with severity of reflux that Owen had, it just takes a little while for the kidney to catch up. Also, two kidneys are rarely the same time.

He closed by saying that he looked great, his kidneys look normal. Normal. We kept saying normal back and forth. I don't think any of us really believe it. It still hasn't sunk in. Owen doesn't have to have blood work or another renal pelvic ultrasound for another 6 months. I truly never thought this would happen. It is just so wonderful, there aren't words to describe how blessed I feel. I look at Owen in awe of all that he is been through and as hard as he has fought to get here. We always knew he would be ok whatever his differences were. Even before when it seemed impossible that the reflux would ever be resolved, there was a plan. He would have been normal, Owen's very own normal. But now he is just normal, as in his urinary tract is normal. Amazing. Wonderful. Thrilling. Miraculous.

For the umpteenth time, thank you Dr. Gazak!

Tuesday, March 2, 2010

Hips Don't Lie

Today Owen had a follow-up appointment with his orthopedist. We haven't been there in 6 months. The purpose of the appointment was to check the growth of his hips as well as measure his bones in order to keep tabs on his leg length discrepancy (LLD). We got to the office and Owen was doing laps around the waiting room. He would run past another waiting patient and stop to say hi. Again, he brought smiles to so many people waiting. He kept going over to the door that leads back to the exam rooms, looking at me and laughing. When it was finally his turn to go back I scooped him up and followed the nurse, knowing that his time for exploring and playing happily had ended. The boy is not a fan of doctors' offices, and really who can blame him. The nurse commented on how much he was running around and was happy to see it.

A radiology tech came in to get us to come take Owen for his x-rays. Wes and I both suited up with lead skirts (for lack of a better word) to protect us from the radiation. The way the x-ray is taken, Owen has to stand up on a step-stool looking thing with his back against the x-ray board. He has to stand with his left leg on about a 3 inch block. Today it was 2 boards and a children's Bible. I stifled a laugh at the irony of him standing on a Bible. He actually did well, much better than last time. He moved right when they took the first x-ray so another had to be taken, but last time we could barely get him to stand there.

The doctor came into the exam room and told us that his hips look great. That is one of the most important things with Owen regarding his LLD. First of all, he had hip dysplasia, so making sure his hips are developing and forming well is critical. Also, without the structure of a strong, well developed hip, a leg cannot be lengthened. Since that is what will correct his LLD, we need his hips to be in top notch condition. They look great, and hips don't lie! Great news.

We expected the discrepancy between Owen's legs to have increased. It did not. His left leg is still about 3 cm shorter than his right. It is GREAT that the discrepancy did not increase. The doctor (I don't know if I've mentioned but I love her) insists that it will eventually increase, but I choose to hold out hope that it will not. She watched him walk (and run and climb) and said that no way did he need a shoe lift at this point. I was thrilled to hear that. I feel that we should wait to open that can of worms until it is absolutely necessary medically. He gets around amazingly, and really doesn't even notice the difference. Even MORE good news, we don't have to go back for another follow-up for a year. A year. This is the first specialist that has allowed that long between visits.

We discussed the lengthening procedure. She believes that she will have to perform two lengthening surgeries. A bone can only be lengthened by 20% at a time. I don't like the thought of it, but the good news is that she feels she will only need to lengthen his femur and not his tibia. She thinks the discrepancy in the tibia will be so minor that the length can be made up in the femur. This is promising because only one bone will need to be broken. One thing that was quite shocking was when she shared with us that at the last deformity class that she attended, there was discussion about beginning the lengthening process at the age of 4. Previously we had been told age 8 at the earliest. I just didn't feel great about the idea of a leg lengthening surgery at the age of 4. She agrees, saying that she is not sure how comfortable she is with the idea. I am not sure how she is thinking about it as a surgeon, but as a mom who has a 4 year old I am aghast at the idea of keeping him non-weight bearing, about turning screws in an external fixation device to grow his bone when he can't truly understand what that means. After the lengthening is complete a child can walk, but it is very important not to bear weight during the actually process of growing bone. The screws can only be turned 1mm per day, so it isn't an extremely expedient process. The good news is that we still have 2 1/2 years of medical advancement and time for the medical to community to decide what is best. It is not a decision that needs to be now.

I think one of the most satisfying aspects of today's appointment for me is that according to what the doctor said when she first began seeing Owen, this would have been when he started to walk. Instead he has been walking for 8 months and is now running, climbing and getting around like he has no idea that he has LLD. Again, he amazes me, I am so proud of him. The doctor was too, it was clear.

Monday, March 1, 2010

18 Months

Owen was 18 months old on Saturday. 18 months, a whole year and a half!? I know I have said this numerous times throughout the development of both of my children, but seriously where has the time gone? It is absolutely unbelievable to me that my baby is a toddler. In fact, I won't have it! He is my baby, end of story.

It is funny, because I remember this stage in Carter's development. I remember being frustrated because he was talking, but was still unable to fully communicate his wants and needs. We used sign language a lot with Carter. We tried it a bit earlier on with Owen and he didn't take to it. He talks quite a bit, but has fairly recently started to whine and show discontent when we don't understand what he wants. I'm thinking another shot at a few signs is in order for Little Man.

As always, watching these kiddos grow is amazing. Owen amazes me every day. His smile and laugh continue to be contagious. He and Carter just crack each other up. Once Owen gets a laugh out of you, he keeps on going until you are just in stitches.

I do not believe in comparing the abilities of my children (or children in general for that matter), but I cannot help but notice the difference between Owen and the way Carter was at this age. I believe the differences are in large part because with Carter I was a rookie, whereas now I am a seasoned veteran. :) In all seriousness, one minute I find myself thinking, "Owen seems so much younger than Carter was at this age." and the next minute trying to remember, "Was Carter doing that at this age." The former no doubt has a lot to do with all of the illness that Owen has been through. In a lot of ways I feel like we were robbed of a normal infancy with him. Of course we were not robbed, we are blessed for each moment he has spent as part of our family. Still, it is a fact that Owen's development has been different from Carter's simply because of his health issues. He has been through more than anyone should go through in a lifetime, let alone in 18 months. However, he has thrived, has hit every milestone. He is right on track. For that we are so thankful. As for wondering if Carter had done such and such by this particular age, that is where the differences come in. It intrigues me to no end to look at the personalities of each of these precious boys of mine. They are so similar, yet so different at the same time. Most importantly, they love each other so incredibly much. I hope they have that love always.

I find myself nostalgic for moments passed, sad because Owen is our last baby and he is growing up. But boy is it fun to love these boys and watch them grow!