CytoMegaloVirus VS. Preston Wayne Sisk

CMV took the first punch before Preston was able to take his first breath (cheater!). Ever since...Preston has been kicking and punching his way through life. We feel very fortunate that Preston is only showing mild complications in comparison to others who were born with CMV. As I have stated previously, Preston is behind with his Gross Motor Skills. He is doing well cognitively and is a social butterfly. He is not talking like we would like and will be adding Speech Therapy to his long list of interventions. We just found out two Fridays ago that Preston is showing signs of Bilateral Hearing loss. The loss is minimal but since he is so young and learning to talk and has the CMV which increases his risk...he will be fitted for hearing aids on May 24th. This comes as a shock even though we were expecting this to happen at some point. Preston can hear us. He hears our conversations. He responds to us. But, there are certain things that he can not hear. The way the doctor describe it was this: He can hear us say, "House" but the "s" may not be as clear to him. With him learning to talk we have to be proactive and try and help him hear everything in hopes that it won't affect his speech. Today we went to the Cardiologist. The thickening seems to have decreased or stayed the same as the heart has grown. This is good news. The only issue is this: Preston would not sit still for the ultrasound and they were not able to get a good picture of the bottom half of his heart. So, we will follow up in 6 months and see if we can get a better picture. The cardiologist was amazing and he was PRO Parent. Some doctors are so rude. I am grateful that we have met some amazing doctors and nurses along the way. He agreed that we deserved to know what was going on and WHY. He said that he was going to talk to a Neurologist and make sure that we were not missing anything. He made me feel that he cared. He was thorough and did not rush through the visit. That was refreshing. Preston is such a happy boy and we appreciate everyone's thoughts and prayers. He is lucky to have a strong support system.

Changes

There have been many changes that have taken place in the New Year. I have increased my work load, Preston went to day care for the first time, and Lily is in Preschool 5 days a week. I have also taken over the Parent Co-Chair position for the Catawba County L.I.C.C.. It has been a great and empowering journey. Lily loves her new school and teachers and seems to have blossomed even more. Preston is still getting used to his new environment but we have a wonderful support team with his teachers, director, and the United Way Inclusion Program. During his time at day care he has started to wave, says Mommy and DA DA, is learning to sleep on a cot, is starting to wean off of his paci, and will soon be sitting in a chair independtly at lunch. We had a very busy two weeks. Preston went for Pre-op in Charlotte, he had surgery for his 2nd set of tubes, and had an adnoidectomy, and got his braces for his legs. He was fitted for the SMO's about 4 weeks prior and we have been waiting to receive them, anxiously. I feel that the modified SMO's are going to be the key to getting him up and walking. They are simple in design but they allow for Preston to have a more stable base and prohibit him from curling his toys or turning his feet out. We have already seen an improvement in his standing and balance. He was sick after surgery and his breath smelled like road kill!!!! We then had to take him to his Pediatrician because he was running a fever and started to tremble. The following week we had to take him back to Charlotte for his CMV Specialist appointment, he had a swallow study at the local hospital, and his 15 month check up with shots. Then, after those busy 2 weeks he started to have an upset tummy and had to go to his 1 year check up for his eyes. I would like to say that the next few weeks are appointment FREE!!! They seem to all hit at the same time! It can be very overwhelming and extrememly time consuming but we have to do what is best for Preston. He has to have these follow-ups to ensure that we are on top of everything and that we are being as proactive as possible. Due to the fact that we have been proactive he has been slowly catching up and is reaching many milestones. Preston is scheduled to see his neurologist on March 27th. The daycare has noticed some trembling in his extremeties and we want to rule out any possible seizures. We do not think that it is a seizure but we have to make sure. We have spoke with his Physical Therapist and his Service Coordinator and they feel that it is still possible that he has mild cerebal palsy. We are not sure what is going on in terms of his delays. It could simply be the fact that he was born with CMV or it could be more. All we know is that Preston is a joy and we are lucky to have him here with us. He has introduced me into a career that I love and enjoy. He has shown me that I am stronger than I ever thought I could be. Preston has brought a joy into Lily's life that she may not always be grateful for:) But, for now she is an amazing BIG sister and has been an amazing helper and entertainer. We have been fortunate to have experienced a less severe case of CMV. I would also like to say that as Preston's mother it is very difficult to look at FaceBook and watch other children reach milestones that Preston has not reached. I have several friends that have children who were born several months behind him and they have reached milestones that Preston has not reached. I know that Preston will eventually reach them. I do know that. I do know that Preston has been through more, medically, than those other sweet babies. It is just difficult. It is also difficult to go into his day care and see the younger kids excelling on past him physically. Preston is very on key with his cognitive abilities and his social and emotional milestones. But, his physical and speech are behind. He has started to make leaps and bounds of improvements but he is still behind. I know that we are doing all that we can and hopefully when he starts to walk and can focus on speech he will catch up. I am not complaining. I am simply using this blog to express how I feel. Sometimes, when you have all of this weighing on you....it is nice to work through it. I guess part of me needs people to khow...that yes, I do hold myself together very well. But, deep down...I am struggling through the emotions at times. I hope that this blog can be a help to others who have children with delays and special needs. We need to know that it is okay to feel this way. That it is okay to feel sad, responsible, guilty, and worried. I know that I feel those emotions daily sometimes. All I know is that my children are Happy and they live a great life and I am proud of them both! Happy Saturday! We are looking forward to SPRING!

Early Intervention

I can not stress enough how important Early Intervention has been for our family. I have become involved with the Local Interagency Coordinating Council (L.I.C.C.). In the time that I have been involved I have been a part of starting up a FaceBook Page and a Blog. When Preston was born with CMV and we were rushed into a frenzy of appointments once he left the hospital...I felt so overwhelmed and alone. When I finally gained my bearings and got everything straight I felt the need to become involved with the Community. If I can help one family feel less stressed...I feel that I have accomplished enough. I have been blessed to find a wonderful job as a Community Based Rehabilitative Service Provider with Little Angels Therapy. By doing this work I have received a lot of training, I have met wonderful people, and I have learned that I am my son's best advocate. One of the most important things that I have learned is that I am not alone. There are so many professionals our here that have a heart of gold and want to help. Reach out. Below are some links that I feel may be helpful to parents and professionals: FSN/HOPE CDSA L.I.C.C. L.I.C.C. Blog Milestones Have a great day! -Liz

Winter 2012

Here are a few of our family pictures. There are many more but for now enjoy these!