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Wednesday, November 28, 2012

Happy 10th Birthday Brendan!

Wow how can it be that 10 years have gone by?! It feels like time has flown by but then when I really think about everything we have been through over the past 10 years it feels as though it should be much longer. I have started to lose count of surgeries and become much less stressed about upcoming botox injections. I can say I have become used to our life and I can't imagine it any other way. I would love to take away all the pain and struggles you have but I know that isn't possible so I just try and make your life the best it can be! What have we been through over the past 10 years..let me revisit all the 'lovely' memories * Born on Thanksgiving Day at 33 weeks and weighed a whopping 5 lbs 5 oz! * You were born blue and had to be rescusitated, however I was never told this..I read this in your records. * Only spent 11 days in the PICU! We had no idea cerebral palsy would be our future. * Crankiest baby alive for the next few years...we found out why little by little * Started EI therapy at 6 months old found out you had brain damage at 11 months old * I don't remember exactly when but we found out you had a vision problem (CVI), cerebral palsy, and a hole in your heart (ASD)all within months of each other and I nearly lost it. It was a LOT to take in for a young first time mother. * You wore a helmet for your flat head when you were one years old * We went to a sleep clinic and had a 24 EKG done to determine why you NEVER slept! * We found out you did NOT have seizures which was awesome and mom just needed to let you cry it out! Who knew?! * You had two surgeries at two years old for undescended testicles (the joy of being born early) * You started yearly botox injections at 3 years old * You had major right hip surgery (osteotomy) at 5 years old * You had right eye (strabismus) surgery at 5 years old * You had your ASD closure at 7 years old * You had right hip hardware removed at 7 years old * You had tendon and tissue releases at 8 years old We have been surgery free for ALMOST TWO YEARS...which was my goal after three surgeries way too close to each other. I remember counting how many therapies and appointments you had during your first year of life and it was over 300! I did them all myself and worked part time. I am not sure how I did it on top of never getting any sleep. We made it through your first year and then two and then three and somehow we made it through TEN YEARS! I have no idea what the next ten years will hold. I am sure there will be more surgeries. I am sure there will be more heartache because I am already aware of two horrific things that are wrong with your body. I can't even think or write about them right now. I tear up instantly and it is your birthday so I am going to be HAPPY! I think life will get easier as the years go on. Surgeries will not be so frequent. Therapies won't go on forever, at least I don't think they will. One day it will be up to you to get your butt there! HAHA Maybe you will even live on your own one day and get married. If not we have built a house that you can grow old in. We may need to build a handicap kitchen if that is the case but until then I will continue to enjoy my amazing family. I love my life and my children make me extremely happy. My husband is by my side every day and helps me get through the difficult days. HAPPY BIRTHDAY BRENDAN!! Still can not believe you are TEN!

Monday, November 19, 2012

Parent Teacher Conference

I met Brendan's teachers tonight. I have always been impressed with this school especially since it is public. They really seem to know what they are doing for these special needs kiddos. This year started out a bit rocky. His special needs teacher quit and they took a while getting someone in his classroom...she just started today. However, after today's meeting I feel okay about it. He is able to be with his typical peers for morning work, social studies and science. Today I found out his favorite subject is Science and that he LISTENS and ANSWERS questions in class appropriately. The teacher wants him in the typical classroom more often because some of the other kids in his special needs class are not verbal and she feels Brendan needs more interaction with his peers. I already LOVE HER! She is looking out for my son and sees that he is smart even though he doesn't always come across that way. She knows he can't write or read but he can comprehend and be still be an involved student. It was great to hear positive things and a bit shocking I must admit that he can answer questions correctly. I think the ADHD medication is really helping him concentrate during school. Medicating your child is always a difficult decision but we definitely made the right one. He has learned more in the past two years than the first 5 years. I am one proud mama tonight! She also mentioned the kids are great at helping Brendan when the teacher is busy with other students and he works well in a group for science projects. I wasn't surprised to hear this because most kids seem to love him.

Saturday, November 17, 2012

I dreamt that Brendan walked....again

I have these dreams occasionally. They are bittersweet. I never really see Brendan upright without equipment so it is unusual to see him in this stature. I am not even sure he really looks like him in my dreams. It is almost impossible to picture what he would look like standing and walking. His PASS worker has been practicing with him lately to stand up without holding onto anything. She kneels and he stands facing her with his hands on her shoulders. When he is ready he lets go. He does not last very long but it is a start. Something he could never do before. Confidence is a huge issue for some reason. He doesn't think he can do it so we tell him to say "I can do it" to help him feel more confident. I think it is helping because I saw him stand and it was for at least a good solid second. Yes just one second...doesn't that sound strange? It was really exciting to see and I feel like just maybe one day he will stand for 5 seconds and then 10 and then who knows how long! Life would be much easier if he could just stand. He doesn't have to walk but just to be able to stand up when need be would be very helpful for everyone. When he does things like this I dream big. I dream that he walks. He walked funny in my dream, kind of hunched over and fast! I remember the feeling of excitement I had and how proud I was of him. I hope one day we can experience this but until then I will count the seconds that he lets go of someone or something and stands all on his own! It only took him 10 years :)