Sunday, April 2, 2017

A Whirlwind of a trip but we are home!

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 to me but I am not the type to strike up a conversation and he certaintly is that person. I have no idea where he gets it from. We tried to have some fun while out in Texas. He loves to go out to eat. We went to the Waterway, to the mall and enjoyed Galveston.


My husband and I have been burning out recently. We have been working with him constantly since he had SDR over 2 years ago. It is exhausting. It takes time away from the rest of the family and it gets monotonous. Maybe we all need a week off here and there but then I feel beyond guilty. I never feel like we do enough. Going to Texas gives us that reboot. We get a new work out and get excited once again. Recently Derek and I have been worried that Brendan can't progress due to his weakness, hip subluxation and lack of determination. SPML and a tendon transfer at age 14 was harder than I expected. He took a long time to recover and is just now bouncing back and starting to progress. Mike Poole predicts that he will walk in canes but it will be a long term plan and it all depends on his determination. He is lazy, we all know it, 5 months later. He lacks determinatoin and we need to figure out how to help him gain motivation. He is used to everyone doing everything for him and generally lacks any sort of drive.

Brendan's week of therapy was mainly about getting him to stand correctly. We stretched him out big time and then got him to feel what it was like to stand straight and tall. Something he never enjoys or does on his own. I get him to stand tall in his stander and that is about it. He constantly crouches in his walker and this has caused his quads to become tight. His hamstrings are looking good since SPML so we need to focus on stretching him out, standing tall and moving more reciprocally.


The kids were all great for their dad. They missed me but did awesome! The 2 year old even got sick and while she was mad at me for not being here and kicked the phone away and wouldn't video chat with me she let her daddy take care of her. She was very clingy with me upon my return and wouldn't let her 4 year old brother near me but she is still under the weather so that could be why.

We all survived another week and we won't be going back to Texas for another year unless he needs hip surgery. We decided this family needs a break. I have been gone for 7 weeks in the last 25 months and our family isn't used to anyone leaving for a day nevermind a week or more at a time. We received horrible news right before we left for Texas that his left hips is 50% uncovered. The docotors here want to perform a very invasive hip surgery which I am completely against and don't feel it is the best choice for his hip condition. Dr. Yngve and Dr. Nuzzo perform a different kind of procedure that would be easier on all of us.

Unforuntately this mama totally messed up and missed his appointment with Dr. Yngve while out in Texas. I wrote down that it was on Wednesday and even had his therapy scheduled in the morning that day so we could drive 1.5 hours to attend. When we arrived I noticed there wasn't any other disabled children in the waiting room and had that sinking feeling. I was a day late. He also started vacation the following day so I was out of luck. He wasn't in the office that day and there was no way I was going to see him. I was crushed. I really wanted to talk to him about his hip and to hear how he felt his right arm was doing after the tendon bicep transfer. I am still kicking my self for that one!

So we are home and trying to rest up. I got the worst sleep all week long and am happy to be home. The kids were actually sleeping in today but the dog woke me up at 7 am to go outside which then woke 2 young children up for the day. The story of our lives!


Standing So Tall!

Goodbye Texas


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