Breakthrough!!! I am so ecstatic!

I was in Drew's room for a while and couldn't hear the monitor so I didn't know if Brendan called me or not. It was 8:30 am and I figured he needed to go to the bathroom so I hurried up with Drew and went downstairs. Immediately Brendan called me whining: "Mom I had an accident". Immediately I became aggravated because I just dealt with a nasty accident the previous morning. I was all huffy ripping off his blankets, telling him he needs to call before the accident...blah blah blah. I roll him over and nothing is wet. I notice a tiny little spot on the sheet and immediately my attitude does a 180! Brendan, I say, did you stop it? He said YES! For the first time he stopped himself from having a full on accident, drenching himself, his sheets, his mattress protectors. I was beaming. He was still upset by this small amount and gave me excuses like "I drank a lot last night". I told him how awesome this was and what a big deal this is. This is a huge breakthrough and I couldn't be happier. He smiled realizing he was not in trouble and did a good thing. That worst part...he has Botox injections on Tuesday and this ALWAYS regresses him. Blogging is difficult lately. I have ZERO time for myself. I am beyond busy with these four kids, running a new business, and having a tired husband who has 3 paper routes in the middle of the night. I enjoy it. I think I thrive on a hectic life. Four is definitely enough children for us but it is definitely an enjoyable life watching them grow and mature.

Happy New Year

Wow 2013! Where has the time gone? I have no idea what this year will bring. I am trying to make it to two years surgery free....we are almost there! Botox had to be rescheduled because Brendan got very sick for two weeks. The WHOLE house EXCEPT me (for once) came down with it. Fever with a cold. Brendan and Makayla had it the worst. Fevers for five days and Makayla ended up in the ER with croup. Andrew faired well and only had a fever for 2 days as well as Chloe. I have no idea how I escaped it because I took care of everyone while they were sick and Brendan coughed, sneezed, and you name it right in my face multiple times. Botox is scheduled for January 15th and then I really need to make the dreaded ortho appointment to check on that left hip. I am not sure what I will do if the Dr. says he needs surgery. I honestly think I may lose it at, least for a few moments, and then somehow I will get through it. Actually I most likely will get a second opinion and put it off for a while. This kid really does not need to go through this right now. His old Dr. put off the right hip surgery for years until it caused him pain and was completely out of socket. I don't see the rush. I sometimes fear surgeons just like to perform surgery even when it isn't totally necessary. Just another decision I don't want to make. I don't want to put him through that god awful surgery. I don't want him in pain or to be so drugged for 5 days I lose the Brendan I know. I don't want him in a spica cast for 6 weeks and for him to lose so much weight because he can't really fit food in his belly with that cast. I don't want to think that I won't even be able to lift him with it on because he is no longer 5 years old or 27 lbs. So another year with more decisions and more surgeries to think about. That is life with a child with cerebral palsy. The worry never stops. The hardest decisions seem to always be near. At least I had 2012 free of surgeries and the thought of them. Back to reality for 2013, a year I am not really fond of as it is. I can be superstitious and honesty 2013 is freaking me out. Well HAPPY NEW YEAR. At least for now he is happy and enjoying life. He got a cell phone for his birthday and is the happiest boy ever. Goodbye 2012! You will be missed.

5 reasons being in a wheelchair STINKS... and 5 why it can be FUN!

1. He has to wait for someone to help you go to the bathroom and being a mom of 4 sometimes he has to wait a while! 2. He can not do everything he wants to do because sometimes we are too exhausted to lift him. For instance we can't take him to CoCo Keys water park (which he would absolutely LOVE) anymore because we can't carry him up four huge flights of stairs. 3. Getting in and out of rooms and buildings can be very difficult and sometimes impossible on his own. 4. When he drops something on the floor he can not pick it up. 5. He doesn't really have friends outside of school and never goes to peoples houses because no one would know how to care for him. 1. He gets to ride on a lift everyday getting on and off the bus and he has a big ole smile on his face every time. 2. He gets special treatment at times like free trial cell phones at the mall and skipping the super long lines at Disney World. 3. He can do tricks like spin in circles and wheelies AND he always a chair which according to his sisters is pretty lucky! 4. He can hold his younger siblings on his lap and take them for a ride. 5. He gets to hold onto the shopping cart while mom pulls it when shopping alone and loves the fact he is 'pushing' the cart.

Mr. Independent

Brendan is not the typical ten year old who wants video games or toys for his birthday so we got him an overnight stay at a hotel. His lucky siblings got to benefit too. He loves to swim and sleep in a hotel room, it is probably in the top 5 of his favorite things to do. He was asking to ride the elevator, buy a snack, go back to the room all by himself and guess what?! We let him! We were on the second floor and decided he could try going back to the room on his own after we had gone to it a few times. He has a great memory and we all trailed behind him secretively. My husband took the stairs and waited by the elevator. I stayed way behind just to watch my child who is in a wheelchair make it down a very long hallway, into an elevator and onto the 2nd floor to find our room. He did AWESOME! He talked to people in the hallway and wheeled himself all the way to that elevator. He pushed the button and wheeled in. He made it to the 2nd floor. I jumped in the elevator and headed up after him and he was waiting for me with the room key in hand and said "I can't reach". It was probably one of the proudest moments I have had. When you have a child in a wheelchair independence is hard to give. I think I will always be extra overprotective of him. However, he is the big 10 and I have to let him start to grow up. He is ready and I have to start getting ready and fast! We let him go into a snack area and buy his own snack and he even asked the front desk attendant for help. He requested a bag and a receipt. He is too funny. I think he gets percs being in a wheelchair because he was only charged $1.07 for a large bag of doritos and we had looked at the prices and nothing cost that little! Brendan continues to amaze me and as long as we let him grow up and try new things he will persevere. I do notice while public buildings have come a long way becoming accessible they still have a long way to go. Being in a wheelchair Brendan couldn't put the key in the room door or open it, it was very heavy! He also couldn't exit the bathroom on his own in the lobby. He couldn't pull open the door and exit on his own. I wonder are these things that he will learn to do or will he never be able to go places all on his own. Will he always need an aid? While I am so proud watching him become this independent little boy I also get upset and worry about all the obstacles he will continue to face. Not being able to stand or walk makes life very difficult! One things is for sure, he is one awesome kid who doesn't want to let a wheelchair rule his life.

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!

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.

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 :)