Danger! Red Alert! That is a restricted area! One that I promised myself I would never go...Well I'm wearing my bio-hazard suit so perhaps the damage will be minimal.... What if they were all wrong and Leo's prognosis might be better then the they led us to believe? What if after the fluid pressure was relieved there is more brain tissue then the scans showed? What if through all the prayers a miracle happened? Can you imagine being in a place where you are wishing for just some brain damage? Not just wishing, but feeling as if that would be the most FANTASTIC thing ever? Whoa. Anyway, why lately we have been toying gingerly with these thoughts is all because of our sweet, strong boy. He is doing so well. Every week he makes his physical therapist pleased. He interacts, giggles, smiles, and watches us. He plays with his hanging toys and moves his head all around, and even can hold it up a little. I am seriously expecting him to be able to hold it himself once his body is big enough to provide leverage. Every week his head measures smaller, and we are planning on taking him to the "Noggin clinic at Dartmouth for a helmet which will mold the sutures on his head flat. The nurses say that eventually his head will look perfectly normal! And he's so strong and healthy! I remember when I was still pregnant the strong conviction that I had of his strength, the feeling of knowing that I carried a fighter. I never had ANY doubts about him, that's also why when we found out it was such a shock. It never even occurred to me that there might be a problem with the baby. He has a wonderful appetite, nursing and taking a bottle both. His visiting nurses love him to bits and always comment on how "with it" he seems. He hears perfectly and is definitely not blind. He just glows with sweetness and love....I could go on forever! Anyway all this makes Justin and I talk about getting another MRI, or CAT scan done, maybe even at another hospital. He hasn't had a scan after the shunt placement. Who knows? The brain is a huge mystery even the neurologists admit that. Oh but what if???? And on the other hand, if he is doing so incredibly well, making us fall in love with him so completely who cares what's in his head? As long as he lives, who cares! Just stay with us boy, for a very long time. Here's a clip of a peaceful morning with our little hero. As always thank you all for your love, prayers, and comments!
So for the past couple weeks my feed has been filled with the "back to school" and "end of summer" and "beginning of parental freedom from their annoying offspring" photos. It's ok, I totally get it. Another year, another back to school pic, another notch in the door jamb, and another chapter of growth and development with junior. Look at him go! Or not, as the case may be for many children. According to the CDC (Centers for Disease control and Prevention) one in six children has one...a developmental disability. A stamp of "not normal" across their foreheads. A number. A check mark in a box. My kid is one of them. I heard a brief segment on NPR that enticingly started out with the title of developmental delays on the rise, a 17% increase over the last twelve years. And though I turned up the volume the segment only talked about how it's probably only due to poverty, and it's only the upper classes that actually pursue diagnosis...
This is such a moving post to read. Will your doctors do another MRI just to see what's going on? And I love the video, he's adorable!
ReplyDeletemy daughter and i were watching this video and she said 'he is happy as a clam.' i think she is probably right! he is so sweet.
ReplyDeleteLeo must be a joy just to be around! I'm sure everyone would be very interested to see what additional imaging would show. The thing is, regardless of the result, you have here a very happy boy who is loved to pieces.
ReplyDeleteI really just want to give him a hug!
ReplyDeleteLeo looks like he is growing well, and I can't believe how active he is. Great to hear your voice in the video too!
ReplyDeleteMarcy
There are so many of us who started praying for a miracle the moment we heard the diagnosis. There are so many of us who continue to pray for that miracle. Glory to God for all things!! THank you precious Happy Baby for being such a miracle in our lives!!
ReplyDeleteMy boys (age 1 & 3) & I are praying for your sweet son!
ReplyDeleteI just played the video for my youngest (3). I didn't have the volume up very much and while my son could hear the jingling, he couldn't hear Leo. He complained, "I can't hear him!" Just then, Leo cooed quite loudly and my son turned around in excitment and said, "I HEAR him!!" This from a little boy who does NOT like babies. (c;
ReplyDeleteThanks for the great video!
ReplyDeleteYou wouldn't be normal if you didn't think "what if?" at this point. We all fantasize about our children's futures, you just have a different starting point with Leo than with most babies. And what happens? - our children end up being and doing what they please. You've said all along Leo was in charge of all this.
So, scan or no scan? That's a tough one. It will only give you hints about what the future could bring, right? Perhaps justify your feelings about why he is doing so well right now, or prepare you for challenges that will likely come as time goes on. Perhaps your poor, loving hearts need a little information to at least give you a hint at what may be coming ahead. Leo is in the driver's seat, but as passengers, even the most tentative road map would be nice. I'm praying for God to guide you in this!
I think. . .what if? Would you be doing anything different with all the programs, all the love, all the prayers, all the giggles? Probably not. He is so cute in this video, active and continues to surprise everyone. Leo is a true gift and will lead your family and all those who follow this blog with hope, prayers and support. How wonderful you are to share these clips and your thoughts. Hope all are feeling better. Love and prayers
ReplyDeleteLeo looks so big in this video! I guess if his head is getting smaller, that might help his body look bigger, but he is definitely growing a lot. We really miss you guys, and we love all the videos! Leo is so sweet.
ReplyDeleteThat's my girl and her little lion. Most kids kick their feet out of stubbornness - he's the first I've known to kick away out of the sheer joy of obeying his Mama! We remain a little bit astounded, and enveloped by a great and mighty missing of you!
ReplyDeleteThinking of little Leo and his family, and so thankful to have him in our lives. He is a true warrior of Christ in all he does bringing so many prayers, love and joy to all.
ReplyDeleteHappy Thanksgiving, Anna Justin, Nika and Leo.