happy love kids

What to do with these boys. Andrew has had some issues with his speech since preschool. He was boarder line at age 4 and they did not feel he needed therapy at that time. His teachers said they often couldn't understand him so they brought a team in to evaluate him. They said he could just outgrow his speech issues because the sounds he had issues with were normal for many at his age. They informed his school and asked for an eval to be done at age 6. Fast forward and here we are. Andrew is 6 and in the 1st grade. he had an eval in Kindergarten but they wanted to have one again at age 6. This year he failed his evaluation. I don't seem to notice his speech issues. We understand him and he self teaches if he pronounces words wrong. He even taught himself to stop saying stoon but rather spoon. He practiced in his bed one night and ran upstairs the next morning to tell me he can now say spoon correctly! This was months ago and I feel his speech has improved so much from his own do...

I think I have shed many more tears than my son. I think I dwell on what he isn't able to do way more than him. I think I freak out about the future more than he ever will. I think I am the one constantly feeling guilty that he sits in his wheelchair too long, hasn't been stretched for the day or needs to take a bike ride. Brendan is perfectly content sitting in his wheelchair. Some days I wish he had more drive. I wish he had some motivation. I wish he would ask me to get up and walk, take a bike ride, go in his stander or to go on the vibration plate. It is all me all of the time. I always have to ask or tell him that it is time to get out of his chair. MOST of the time he doesn't fight me. He enjoys working out and loves going on bike rides. Some days he isn't in the mood or doesn't want to get off of his computer but he is 15 so I totally get that! The other night as I was thinking of 1000 irrelevant things instead of going to sleep I realized something. I real...

Why must our country have ridiculous insurance hoops that we must jump through? Why must it take months to receive an item approved by insurance? Why do people suddenly help you when you offer to pay out of pocket? Brendan's wheelchair had a serious issue this past week. He came off the bus with a completely broken foot plate. Not only am I still extremely annoyed that I never received a phone call, text or email regarding his broken foot plate but I also couldn't get through to the mobility company. I never even got the full story about how it broke off even after asking multiple people. The only explanation I ever received was that "it just fell off". I don't think that is possible but since no one will tell me what happened in PE that day I guess I will never know. So my son gets off the bus with his foot dangling and my husband immediately went into Macgyver mode. I called National Seating and Mobility immediately in order to get a replacement and of course th...

Most of you may know my birth story. It will forever be ingrained in my brain and it isn't a happy memory. I was ignored, I wasn't examined and I was sent home after only having a non stress test all to be rushed back by ambulance with a partial placental abruption. If only my doctor or the nurses listened to me just hours before my son could have been born healthy. Instead he was born blue, had to be resuscitated, intubated (twice due to the wrong tube size) and then brought to a different hospital with a level 3 NICU. Here is some great information to help you understand how a birth injury can effect your life forever. I know first hand because Brendan has brain damage from loss of oxygen due to medical negligence. I fought and won and am able to give my son the life he deserves. It isn't an easy process but it is worth it. I am so glad that I went through the process because raising a child with special needs is extremely expensive. Check out Birth Injury Lawyers Allianc...

In 2 days and 2 months from today I will be a mother of a 16 year old. I am not sure how that happened. How has life gone by this quickly? How have I been a mother to a child with cerebral palsy for 16 years? How have I survived the stress, grief, appointments, therapies and all of his behaviors? How have I learned to cope and love and even come to enjoy his idiosyncrasies? Somehow I have. Somehow I have made it this far. Somehow the future is slightly less scary. Somehow the tears have become farther and fewer. Somehow I have reached 100% acceptance. Somehow I have become stronger and wiser. Somehow it will be 16 years or 5,840 days of living a life that I never imagined. He won't be getting his learners permit, he won't attend school dances and possibly not even prom (he doesn't like to), he won't have best friends like I remember but he will have the best life I can give him. I will never stop doing what is best for him. 16 seems like a turning point. I remember coun...

This was our first visit to an abilities expo. I was oddly excited. We really enjoyed it and spent a solid 4 hours looking and trying out everything. Brendan was a little overwhelmed. He handled it great and tried out bikes, power chairs and the chill out chair. School has been pushing for a power wheelchair for Brendan. I knew that I wanted him to have one when he turned 18 but I am realizing he may need one sooner. In his high school they start to go out into the work force. They actually go to work for part of the week as they age so this is something he will need before adulthood. I had my heart set on the Permobile standing power chair. I wanted to see all the other options before he trials one. I am a little torn. I loved the Rovi x3. The size, the features and the look of it. Brendan did really well driving them around. One gentleman even commented that he picked it up very quickly for a first time user. I was really proud of him today. He tried everything out without any attitu...

I always want to come here yet never have the time. I honestly do not get any time for myself. Having 5 kids and their sports and therapy all while running a business leave very little time for me. Brendan joined Drama this year as well as basketball. Some days he had both! He was in a school play (very small part) but it was so great to see him part of something like that. He absolutely loved it. They did Little Shop of Horrors and it was an excellent play. His siblings wanted to watch it multiple times and then we had to rent the movie. Brendan's challenger basketball team won the state champs! They rode the bus back to school with a police escort. HOW COOL?! Brendan has been growing like a weed. He hit 5' tall which means he is catching up to me! His knees became crouched so badly again that I knew he needed SPML, again. This was his 3rd round. Although his spasticity is gone he still has some tone issues and his tendons don't grow properly due to having spasticity for 1...

This month marks 3 years since Brendan had SDR. Everyone always said time flies as you age and it surely does. Life has been different ever since he had surgery. He has come so far in every way. He is such a great kid but can still drive me insane daily. Looking back I still believe it was the best decision we could have made for him. 3 years later and I still work him out religously. He is still off all medications. His sentence structure has improved imensly. He can speak complete sentences and carry on conversations which I absolutely love. He had an Iphone for 5 years and switched over to the Samsung android and has learned how to use it all on his own and handles it great. I am impressed. He still uses his walker to all doctors appointments and short outings. He attends physical therapy once a week and has the best therapist that pushes him and doesn't put up with his shinanigans. We even laugh, a lot. Brendan is his typical self and the whole facility has fallen in love wit...

Finding shoes to fit over these new braces has proven difficult. I took him to our usual shoe store immediately after picking up his braces but for some reason they didn't do the job they normally do. 3 pair later we finally have some that fit. Yorker shoes usually is quick and painless and the shoes last the next year. An older gentleman helped us out this time and unfortunately I should have paid more attention. Normally they choose the perfect pair, they fit and we leave. This time I noticed the gentleman was having trouble getting the left one to slide on but I thought he just wasn't strong enough. I didn't look at the shoes because he did manage to get them on and off we went. They are New Balance but he heals are not rigid which makes it nearly impossible to slip the sneaker over the heal of the AFO. It seriously took me over 5 minutes to get his left shoe on one day while trying to leave his doctor's appointment and I was determined to find shoes that fit after t...

We got to pick up his new AFO's. Of course his old shoes didn't fit so we immediately had to go shoe shopping as always. We go to Yorker shoes. They are great and always have shoes that fit over his braces. We love New Balance. They hold up really well and come in wide and extra wide. Since his foot is longer now we normally only need a wide. He needed a 6 1/2 to fit over his braces which I think is 1 1/2 sizes larger than his actual shoe size. He asked for red and I was picturing this horrible bright red brace but shame on me for even doubting his orthotist to not come through with an awesome looking brace. I actually love them. He chose some very bright blue sneakers to fit over them. I was shocked he didn't want to go with the black pair but he said "nope, I don't want those". Maybe because his last pair were black. He likes to switch it up. The worst part about new braces is adjusting. He tries them on and they get adjusted while we are there but we are ne...

I am not sure why Winter is when most of his appointments have to occur but here we are yet again. We are picking up his new AFO's on Friday. February 2nd he has his yearly physical at the pediatrican and then February 26th he has the dreaded cardiology for his echocardigram. He also will need a dentist appointment soon and a wheelchair adjustment/parts order. Brendan is becoming more decisive lately. I usually go over color options before we head into his casting appointment but for some reason I forgot. Katie, his orthotist, asked what color he wanted and he immediately exclaimed, red! I was impressed with his instant decision. Maybe he was already thinking about it before we arrived. I am slightly bummed we are back in AFO's after SDR but this type is necessary due to his crouched walking. We bought an ankle sport brace to use on his right leg while he works out. This allows him to gain muscle instead of the braces doing all of the work. I asked his orthotist if we could pay...

Brendan is growing and is OUTGROWING our side entry Toyota Sienna. I didn't even realize this was a possibility but apparently it has happened to other people as well. He got a larger wheelchair frame 2 years ago and we have been struggling to get him into the van since. It has really begun to bother me. I can hardly reach around his chair to get the tie downs around his chair. It is also very difficult to wheel him in and turn him into position. His tip wheels get stuck on the tie down system and then his feet get stuck on the seat in front of him. We have had this van for nearly 7 years and I was hoping to keep it for at least 10 but we will sell it and put the money towards the new vehicle. There are so many options. Since we have a large family we can only go with the mini van or full size van. I decided against the full size even though we probably should have that size to fit our family comfortably. I didn't want to drive that huge van around everywhere and worry about ro...

It is hard to belive it is already 2018! This year flew by. Our children had a wonderful Christmas. This year was a bit different because both my Mom and my In Laws went off for the Winter. My mom is in AZ and my inlaws are in FL. They chose a great year to escape New England as we are stuck in single digits a bit too much for my liking. Our youngest already turned 3 just a few days ago, Now that is it crazy. It was a pretty easy year. Our business is going well and the kids are all healthy and happy. Actually the 3 year old is down and out with a fever right now. Hoping she feels good tomorrow, it will be day 3. Four kids are now in school which makes life a bit easier. Lily is getting older and easier to take care of especially while at work. I hope 2018 is just as good to us. Brendan didn't need any surgeries and has had good behavior especially for being 15. We continue to work out multiple times every single week. This is very important after SDR. February marks 3 years since ...

I don't always hate CP. I have come to terms with it. I have learned to accept it. I have learned to live with it. Nearly 15 years has passed since CP became part of my life. But today, today I hate CP! I hate that CP destroys the body. I hate that CP causes so many tears. I hate that CP will make me worry until I die. I hate the decisions that CP causes me to make. I hate that CP creates a difficult life for my son. Brendan has been through 11 surgeries in his (almost) 15 years of life. #12 seems to be on the horizon. Brendan had a right hip osteotomy at age 5. To this date it was the most difficult surgery. It was worse than SDR. The surgery itself and recovery was brutal. He has never walked the same. He was running the halls at age 5 prior to getting checked in for surgery that day and did not act like his hip was 100% out of place. His left hip has been taunting us since he was 8. It was taking a beating according to Dr. Nuzzo. I found out that it was 40% out of place during h...

It has been one crazy busy Summer. We have had so much fun with the kids and have had lots of adventures. I am so glad we bought the RV a few years back. We have definitely gotten use out of it this year. We would not have been able to do half the things we do due to the cost. It allows us to avoid eating out with 7 people, paying for 2 hotel rooms and we don't have to fly. 7 plane tickets for 7 people = unaffordable. We had a checklist of things to do this Summer and I think we completed it just in time for School to start up again on Thursday. My husband created this list: Fun stuff for our Life: Camping at the Beach Weekend in Vermont or Maine (we did BOTH! and we actually spent an entire week in Vermont and saw the Canadian Border) Kite Festival PawSox Game CoCo Key Water Park Beach Drew's Birthday Camping (Tent camping weekend with Dad) Westport River Boat Ride Martha's Vineyard (We didn't make it here BUT we took a 4 hour round trip boat tour to an Island in Maine...

I have been a mom for 14 years, in fact it has been 14 years 4 months and 18 days. Some days I can't believe it has been that long and other days I feel like I have been a mom forever. My youngest just turned 2 years old 3 months ago. Since Brendan is disabled and requires a ton of assistance I have never had a break from dressing/bathing/toileting etc. I have been changing diapers/wiping butts for 14 years! I have been trick or treating, finding Easter attire, baking cookies for Santa and watching my children eat a mere few bites of their Thanksgiving meal for 14 years. I have been holding hands, carrying children on my hip along with a purse and diaper bag, pushing strollers and acting silly just for smiles and laughter for 14 years. I have had kids at the same school for 7 years and the rest of them will attend the same school for another 8 years. That is 15 years of going to parent teacher conferences at the very same school. This often astounds us. I have been taking little ki...

5 kids is enough for us! We are done. We love our children but we can not handle 6. We have been talking about a Vasectomy for years now. Lily was actually a surprise. We were done at 4. She definitely fits right into our crazy family and I can't imagine life without her but 5 kids is way more exhausting than 4. We were supposed to get this done while I was pregnant with Lily, never happened. She is 2 years and 3 months old and we finally got it done. He is definitely going back for a recheck because I have read many stories about post vasectomy babies being born. I do not need another surprise, one was enough for us! Why did we wait so long? #1 Reason is that Derek is deathly afraid of needles. He doesn't go to the doctors. He doesn't go to the dentist. I got him to go to each once in the last 10 years. #2 We totally procrastinate when it comes to anything to do with ourselves. #3 Neither of us like to make phone calls. We really hate making phone calls, we fight over who ...

Now that was one exhausting week. Not only for me but for my husband as well. I think we both know that he had it harder than I, not to mention this is the 2nd time the 2 year old got sick while I was gone. Not that my life was easy this week mostly because my back pain is letting me know that Brendan isn't a little kid anymore. I actually think lifting his equipment into and out of the suv trunk was more difficult than lifting him all week long. I missed my accessible van every time we went out and we were out and about a lot! Everyone was extremely nice to Brendan and all of his 1000 questions. Every person made an effort to listen to what he was saying as he still isn't always the easiest to understand and they were all so patient with him. He always makes friends with the pilots and flight attendants and recieved many free drinks and snacks throughout our trip. He still talks to EVERYONE which can be embaressing for me as I tend to by shy. I will talk to anyone that talks t...