I have been getting a lot of questions lately in regard to Wesley and Cason. I know I mention their "special needs" (ugh...I can't stand that term!) and all of their appointments and such frequently, but apparently I am more vague than I realized. I am not usually one to be vague! :) I guess I just assume that everyone reading this blog or my Facebook posts is either a family member or friend and already knows the boys' conditions. I have realized that is not the case. So here is some information about both boys that answers some of the questions I get!
Wesley was born with Chronic Renal Failure and just before he turned 2, he had a kidney transplant. He did not come to us until a year and a half later. During the time he was waiting for his kidney and going through the transplant process, he was with an incredible family who took unbelievable care of him. They are still a part of his life which we are all so incredibly thankful for. They love him so much and he loves them. Though we are sad to have missed any part of Wesley's life, he couldn't have been in better hands during that time! Wesley has done remarkably well since his transplant. He is an incredibly strong and resilient little man...full of life and energy. Wesley has only had a few issues since his transplant which were quickly resolved. He has a g-tube which he was getting fed through each night while he slept due to an oral aversion until about 8 months ago. He has overcome this and now we only use his g-tube to give him extra water boluses when necessary and to give him his medicines day and night. His medication is a balancing act...one of the issues we have had with him is finding that balance so he doesn't go into rejection. One of the things that many people don't know is that Wesley will need another transplant (or 2 or 3) in his life. The doctors' hope is that his kidney will last him 1-15 years. Many people believe that once he got his transplant, that is the kidney he will have forever...unless something miraculous happens, that is not the case. Wesley gets lab work done at least once a month to monitor all of his levels. He is so strong and endures so much...he amazes us!
Cason suffered a severe brain injury at 7 weeks of age. He suffers from Shake Baby Syndrome. He is a miracle. Period. It is miraculous that he is even alive today. He couldn't see or hear, had several broken bones, was in a full body cast, had a feeding tube and was in a coma. He suffered a couple of minor strokes and 2 seizures following his head trauma. He was life flighted to Iowa City where he spent a lot of time in the ICU. They saved his life. He was released to a family who loved and cared for him for 7 months...they have become our friends and remain in our lives which we are so grateful for! Cason was said to be blind when released from the hospital and has since regained his sight. He wears glasses and always will due to a severe astigmatism in both eyes, but his sight has continuously improved since his release from the hospital and is almost normal for his age today. Cason has endured Occupational Therapies, Physical Therapies and rehabilitation weekly since being released from the hospital. He has several specialists he sees to monitor his development. He has microcephaly and plagiocephaly. He had a helmet for several months to address his plagiocephaly...it helped, but didn't "fix" the flatness.
When we got Cason on Christmas Day of 2011, he was 11 months old. He could not sit up, roll over, babble, could barely hold his head up, couldn't use his left hand, wouldn't look to the left, wouldn't hold toys, etc. He was developmentally about where a 3 or 4 month old would be in most areas at best. He has always been full of joy though! He got small foot braces to aid him in standing and learning to take steps and we have used a walker with him as well. He is not fully walking yet, but will be very soon! We just got him new braces that will work better in aiding him to bare weight appropriately on his legs and will in turn help him to start walking. He is starting to say words and babbles all of time. He uses his left side now and to someone who doesn't know of his weakness on that side, they wouldn't know it was an issue. He is happy...seriously, he is pretty much always happy! He is a snuggler and a lover. People fall in love with him instantly! He is almost 2 1/2 and is developmentally where about a 1 year old is and in some areas a little bit beyond that. He is learning new things almost every day!
It's hard to tell how he will develop. With brain injuries, you just never know. However, with the way he has been developing, the sky is the limit. He may completely catch up or he may always have significant delays. We are thrilled that he is such a happy boy and that's all that matters to us!
Between the 3 boys and just life in general, we have 1 or 2 appointments per day on a slow day and 4-6 on a crazy day. I remember in the beginning thinking, "I can't do this...I love these boys, but what did I get myself into?!?!" It was stressful and tiring and draining. It's turned into normal for us and unless it's a crazy day completely FULL of appointments, it doesn't usually bother me anymore. I like knowing what's going on with my children developmentally and medically and without the input from all of their amazing doctors and therapists, I wouldn't be so "in the know" because things with Wesley and Cason can literally change from day to day. Over the last year and a half, we have changed doctors and therapists and are at a place now where we feel like we have such great teams who take care of each of their needs. Wesley's doctors and whole medical team or incredible and it's nice to finally know them and not be his "new parents" who are full of questions that typical parents of a child with his condition would know. Now we DO know the ins and outs of his condition and feel comfortable dealing with all of his needs...it took a lot of time, but we are happy with all that we have learned and now can be the best advocate possible for him. And the same goes for Cason. His condition is a little less black and white though. No one really knows how he will develop, but everyone agrees that he a miracle and a joy and that if all goes as we all THINK it will, he will continue to develop and learn and do amazing things. And he has the best therapists and teachers we could ask for. They truly love him and we are beyond blessed to have them in his life.
And I must mention Tate here. He is incredible. We were worried about bringing 2 boys into our home with such significant needs. Now we realize what a good thing it was for Tate to see and to know. He has a sensitive heart. He now knows that not everyone is the same, not everyone needs the same things. I believe he will have much more empathy towards other children he may encounter with needs much more significant than his. He loves his brothers...and they drive him crazy...like brothers are supposed to. :) We are blessed by this family we've built and still have to pinch ourselves. This family is not what we ever dreamed we would have...it's more challenging and life altering than we ever thought we could handle. We needed these boys...WE needed THEM...not the other way around. They have made us better people, they have taught us we are stronger than we knew, they have taught us a new way to love and a new way to be parents.
And the big question...will we have a daughter? Well, God has given us more than we ever knew we could handle and so much that we never expected. So if I say that we're done, I can almost hear God saying, "let me decide when you're done." I am busy right now...like really busy! I am hoping that we are done, but God's plans trump mine, so I guess we will have to see what's in store! :)