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!