happy love kids

We finally made it to our room around 7:30 pm. It was a long day of traveling. We left the house at 8:45 am so we were exhausted by the time we got settled. We had a connecting flight but all went well. Brendan is an awesome traveler but he was really hyper all day long. He talks to everyone and he has zero social filter so he yells across rooms saying hello and asking questions. Honestly it can be embarrassing and he refuses to listen to me when I ask him to stop talking to everyone under the sun. Everyone was beyond nice though. They moved our seats on the first fight to the row right behind first class which has lots of leg room and our seat neighbor was amazing! He was so patient and kind and answered all of Brendan's questions. Brendan actually had great questions. He has improved in his conversations and asked questions based on the gentleman's last answer. I was really proud of him. He never even asked the same questions twice! One thing that I noticed is now that he is ...

This week has had its ups and downs that is for sure! We saw Brendan's orthopedic and received some devestating news. Then his max mobility arrived which means insurance covered it. We are off to Texas in just 3 days and I am not ready in the least bit. My brain can't take much more. I am emotionally drained. So we went to check on his knee before we head off to Texas and all looks okay. His knee isn't doing great because of his poor walking pattern basically his entire life. His knee cap is higher than it should be and a tendon is over stretched which is partially why he can't stand up straight. His tendonitis is doing okay but his knee gets very hot to the touch when he is working out. If we ice it afterwards he seems to be okay. We haven't had him walk 30 minutes straight since the pain began so we aren't sure how well he is really doing. We also checked on his hips and of course the dreaded words were used. SURGERY. Brendan's left hip is 50% uncovered. I...

We leave for Texas in just one week. Let's lay on the mommy guilt! I feel so bad for leaving the family. My husband has to be a single dad for 4 kids and run our business all on his own. I am not sure I could even handle all of that! I am off without the baby this time so it will be pretty easy for me. I really hope that this therapy session will be beneficial. I hope he can work even with his knee bothering him. I hope that we makes some progress. I know he is so weak from surgery and the alcohol blocks and that scares me. I don't want this to be for nothing. Part of me wonders if he will continue to improve or if he will stay the same and then I see facebook posts about children walking in their canes 5 years post SDR. Then I remind myself to never give up, never think he will stay where he is at. It is difficult becuase he is growing like a weed right now which definitely inhibits his progress. Brendan got his x rays done yesterday and we see his orthopedic on Wednesday. We ...

Life is becoming so hectic. The kids are involved in activites and we are constantly running around. Yesterday was our Wedding Anniversary but we didn't even get to celebrate. I am pretty sure one day we will be bored out of our minds! Here is a look into one of our extremely busy days with our 5 kid life: Alarms start going off at 6AM Brendan sets his own alarm with Alexa and we hear him yelling at Alexa to SHUT OFF ALARM! We finally crawl out of bed at 6:30 AM 12 year old gets herself up and ready all on her own, thank goodness. Husband gets Brendan dressed while I brew coffee (very important), prepare school snacks, make lunches for 3 of us and get breakfast ready I prepped dinner before even sipping on my coffee (Corned Beef for St. Patrick's Day for the very 1st time) One of us wakes up 9 year old at 7am Put Bren on bus at 7:12am because it is still so cold out! When it warms up we just send him down the ramp and he waits on his own. Get little kids up, dressed and fed We...

School is closed again! The snow days are piling up lately. It is almost Spring yet we are having a Nor'Easter. Oh yay. We are editing for YouTube today, doing some laundry and I am tagging clothes for work. Brendan is all into YouTube lately and wants to make a new video later today so stay tuned. (See previous post) Life is never NOT busy. I have to bring Brendan for x rays, again! I always bring him for x rays right before his ortho appointment and never have a problem. Well everything didn't go our way that day last month. I made an afternoon appointment so he wouldn't miss school and it took forever to get the little kids dropped off at our work and to drive to the city. It literally took 30 minutes to find a parking spot in the most annoying parking garage and we only took his walker so that took another 15 minutes to get inside. The place was packed with people. I have never waited so long to just check in. His appointment time was approaching and I had a feeling we ...

https://youtu.be/8Vrk_6WhmfM

https://youtu.be/95pwgNOUD34

https://youtu.be/7MIgSTO6DPw

10 Days until Spring and the kids have a snow day. It isn't the best timing because I just realized last night that Brendan's medicaid packet was due TODAY. I have definitely procrastinated before and have driven out there to hand deliver it which takes 40 minutes one way. They actually time stamp it upon arrival. Well now I am home with 5 kids. Not sure that will happen. I may have to call and ask if I can mail it today. I also needed to go to work to make copies of all his insurance cards for the packet. Of course today it snows!!! Brendan has matured over the last few years. Snow days usually put him over the edge. Now he was a bit off on Thursday and wild for therapy. He wasn't the most cooperative and was a little crazy but any disruption to routine can cause any sort of behavior change. He used to get very upset and angry. He handles it much better this year. I had to call him from my bed at 5:30am to let him know school cancelled. He was already awake talking to his ...

https://youtu.be/V4RonP9hZQw

Brendan has worn leg braces since he was just 2 years old! He was always put into AFO's. AFO is short for Ankle Foot Orthosis. I never knew any better. I thought the orthopedics and doctors knew what they were doing and that was the brace he needed. 12 years later I realize I completely disagree with putting your child into AFO's. It completely limits them and does NOT allow them to gain any muscle mass. I was told to have Brendan wear them all day long. Always while walking, always while in his stander, basically he shouldn't do anything without them on. I wasn't as internet savy then as I am now. I did try to research and belonged to some support groups but honestly life raising a disabled child was so different 12 years ago. I am sure you learn as you go but often we just listen to these professionals and truley believe they know best. 12 years ago Brendan had zero muscle mass in his legs. He serioulsy had chicken legs. His thighs were the almost the same size as his...

I wish his right side was as strong as his left. His left side amazes me. He would be very well off right now if it wasn't for his entire right side dragging him down. Derek and I work him out 3 x a week and tonight was one of those nights. I had him basically leg press me. I weigh 114lbs and was pushing back and he would push me right off. I would try with all my might to push back towards him and a few times I could not! I was impressed. We will have to get a video. We usually have him use the total gym but we switched it up. I am pretty sure the total gym has really helped him gain strength. We had him walk for 5 minutes to see how his knee reacted. He said it only hurt a little and only while he walked. He didn't want ice or advil. Lately he has been going on the floor in his knee immobilizers without any fight. Maybe because we have been doing it multiple times a week and it has become routine and I never take no for an answer. I am not sure but I love that he just wheels ...

Three weeks from today Brendan and I will be in Texas again for another week of intensive therapy. I am excited but nervous because recently he had a tendinitis flare up. Last month we started really pushing him on the treadmill. He was amazing us and beating records by the day. He walked 30 minutes straight without one single break. It was incredible. But then his knee started hurting. He had been complaining about it for a few weeks and I kept saying I need to bring you to the doctor and figure out what is going on. He never ever complains about pain. I knew something had to be bothering him. His orthopedic randomly called and said it was time for hip rays so I figured perfect timing, let's go! The doctor told us he has tendinitis and we had to calm down his work outs. It really bummed us out because we were finally pushing him, finally seeing progression and BAM we had to hold back. Cerebral Palsy always wins. He had a regimen of advil and icing his knee and he said it only hurt...