As a coach, it was easy for me to understand the correlation between hard work and progress or the "no pain, no gain" concept. However, pushing an athlete to their potential is a little different than watching my little man be uncomfortable. Cast #3 has certainly fit the bill and has been a challenge to say the least. Hunter's appetite has been minimal and when he does eat a regular kiddo portion, he seems to get sick. The cast is VERY tight around the tummy compared to the first two casts, but then I guess that's why they say, "no pain, no gain". We're trying to fill him with good snacks throughout the day to get him some nutrition and just hope that we can eventually adjust to the change and make it to Cast #4 successfully. I did call the nurse and talked with her about his eating and the tightness of the cast. She said that the doctor really worked to push this go around. She assumed that he was probably pretty sore and asked that we keep a careful eye on him. We have yet to get a definitive casting date for August, but hope to get that soon. The doctor's note said that he wanted to keep this cast on for 2 1/2 months, rather than just 2 months, however, the nurse indicated that we may recast earlier with the tightness. Hunter is also slated to visit his nutritionist on July 7th, so hopefully she will have some good ideas on how to pump him with good nutrients and combat the constriction he feels around his belly.
The plus side is that he had great correction in Cast #3. His doc met with us prior to casting and of course gave us the same preemptive talk about progress and Hunter's uphill battle. Obviously he has to give us this disclaimer. He explained that he had read over Hunter's file the day before and compared it to those of other patients. On average, his patients begin in the mid 40's, and if you remember, Hunter started at 60 degrees. The reason why I love Hunter's doctor is that he told us that after reviewing Hunter's results from the last cast, that he was going to do whatever it took to get him down as far as he could go. He followed by saying that he is stubborn and won't give up on him.
Doc after my own heart!
Cast #2 led Hunter to 32 degrees and his doctor was hoping to get Hunter into the mid 20's in Cast #3, and that he did. I almost started crying as the nurse told me over the phone that Hunter had gone from 32 degrees to 25 degrees!!! Whoop! We're so excited with his progress.
We are blessed to have been able to be treated at Scottish Rite, which I read recently, is one of the top, if not "the top" hospital for scoliosis patients in the nation. We certainly haven't taken this process for granted, however sometimes, it takes a little nudge along the way to remind us to continue to be thankful for the doctors and staff that are directing Hunter's treatment. Over the last week or so, I've read a few posts from parents whose children began casting at the same age and degree that Hunter began casting, but at different hospitals. Their results obviously can be influenced by many factors, which can include pliability, physicians approach, etc. However, I was amazed at the difference of the level of progress. Hunter's first cast was applied on February 21st and in 4 months of casting, his curve has been reduced 35 degrees; 60 degrees to his current 25 degree state. It took the other two littles 2 years to have the same amount of progress that Hunter has experienced in 4 months. We are aware that everyone progresses and grows at different rates and there is always a possibility that there will be a cast/s with little to no improvement. More often than not, this usually occurs when scoli patients begin treatment at an older age and that is why early detection and treatment is imperative. Regardless, we are so grateful that Hunter has had such positive progress thus far and reading other scenarios certainly puts things in perspective. Mind blown and thankful!
At the end of May we took Hunter to see a geneticist. I've been holding off on writing about the experience, as it is a long process and we haven't really gotten anywhere, as of yet, along with the fact that the first appointment was somewhat frustrating. The visit was recommended by his first pediatrician based on the fact that Hunter had low birth weight, reflux, colic, and has continued to remain on the small side, along with the combination of the tethered cord and progressive infantile scoliosis. The appointment was made in January and first availability was May 22nd. What I have gathered thus far from reading and comparing the experiences of others, is that children diagnosed with Progressive Infantile Scoliosis often exhibit a smaller stature/weight. A genetic correlation has not yet been identified, but that seems to be the norm. Basically, the process is very lengthy and could take months of testing. It begins with blood work and X-rays. Hunter took an x-ray during the appointment, but he has to be approved by our insurance and scheduled for the blood work. I have yet to hear back from them on when the blood work will take place. The x-ray process was frustrating because PIS is so uncommon that people assume that the cast can be removed or that he can just take an X-ray when he is out of cast. I feel like a broken record explaining the purpose and process. I had to fight the technician tooth and nail to go ahead and do the X-ray in cast that day, because Hunter won't have a time that he is "out of cast" for probably another year. I diligently explained that he had pre-cast X-rays in the system and they can compare those to the current X-rays with the additional screens of his legs, hands, etc. She finally gave in...pays to be a persistent momma.
He underwent a complete physical evaluation where they nitpicked every little characteristic of his physical appearance. Everyone thinks that the child they have been blessed with is beautiful and all-world; James and I are no different. To hear these doctors scrutinize his physical features saying his ears stick out a little too far and that he has a little too much skin covering his tear ducts, which is more common in those of Asian decent, made me want to nitpick everything about them. Obviously, that is not the right thing to do, so I restrained myself. But, how do they know these traits aren't familial characteristics? Ultimately, they are doing their jobs and and are trying to identify possible genetic markers that could indicate a connection or further issues. The disheartening part is that they started throwing out numbers/percentages without performing any tests.
This is where medical science and religious faith come to blows in my mind.
God knew what He was doing. He is the Great Storyteller. We should be thankful that everyone is different. How boring would life be if we all looked alike?! As we told our vacation bible school students this week, "Even when you're different, Jesus Loves You!".
One of the questions that we have been asked by others is that will our subsequent children experience Progressive Infantile Scoliosis. Honestly, that is only for God to know at this point. The geneticist, being somewhat inexperienced with Hunter's condition, still felt a need to share unsupported percentages about this subject. The day after Hunter's appointment, I got a message from the director of the Infantile Scoliosis Outreach Program (ISOP) to call her. I called her and we chatted for a while. It was actually a mix up and she had intended to call another mom named Dina, but had gotten our numbers mixed up. While on the phone, I told her about our experience with the geneticist and asked her opinion about the percentages pertaining to subsequent children. While she is obviously not a doctor, her knowledge comes from working directly with Dr. Mehta who invented Hunter's casting system and she has worked with a number of families throughout the years. She told me that within her 15 years of experience and working with 3,000+ families who have or have had a child with PIS, only 5 families have had more than one child with PIS. After talking with her, I felt a little more informed about the topic and thankful for the mistaken call.
This topic is a little closer to my heart, as I have another little peanut growing under my heart as we speak.
Let me say, we are absolutely thrilled that Hunter is going to be a big brother at the end of December. However, it certainly does bring new meaning to the phrase "As long as it's healthy". We had wanted our children to be about two years apart and did question whether this was the "right time" to add another little person to our family. After lots of discussion, we decided that we would never change anything about having Hunter or our journey with him. James and I fully believe that God entrusted this handsome, strong, remarkable little man to us for a purpose. He has certainly taught and blessed us and those around him with more love than we could have ever imagined. Whether they find something within Hunter's testing or not, it will not change our love or care for him. The geneticist suggested that we could do amnio in order to see if our new bundle might have the same or similar issues. We will not be choosing this path, because regardless of the outcome, our choice to bring this little one into our family will not change. God has guided us on this journey as we seek treatment for Hunter and I'm certain He will continue to do so as our family changes and grows. Everyone has experiences that mold and imprint their lives. Whether happy or sad circumstances, I believe that God has written them into our story to help us to relay His message. If this new little peanut has the same health issues or even something different, we believe that God has prepared us to deal with the scenario and with His guidance, we better than anyone else, will know how to seek treatment.
Thank you all for your continued thoughts and prayers. I will try to post more frequently to keep you up to date. Please continue to share Hunter's story to others so that we can make sure that little nuggets who have PIS have early detection and get the treatment that they need.
Stay tuned and Blessings to you all!
-Dana
No comments:
Post a Comment