Since this blog is mostly about MM, I will start there.
She finally recovered from that raging UTI. We did not get the great time of clarity we usually get post febrile illnesses. Nana (my wonderful mother) & I managed to sneak her off to the beach for a few days. She has been begging to go to Folly Beach, SC since she found it on a map. It was a quick trip there, a mere 6 hours, from landlockedville. She LOVED it. She did great. She just laid at the end of the surf & let it wash over her. She played for several hours. The weather was perfect- slightly overcast, not too hot. We swam in the hotel pool for over an hour both nights. It was the first trip with her that I ever really got to relax for a day. We left on a Wednesday morning & returned Friday. Nana & I wanted to stay another day, she would have none of that. It was time to "go to MM's house". It was fun while it lasted. The ride home wasn't good. There were a few accidents on the interstate, so it took 8 hours to get home. Lots of stimming while stuck in traffic. So much for relaxing...LOL
We have been having major DAFO problems. Our orthotists is pretty great (Big ups to Bill!). The PT made the decision to go to a smaller/shorter brace. I am not opposed to trying it. We went & got casted for new ones. Besides, the tall ones were too small causing blisters & pressure points. I don't know what is going on with Casc.ade (the company who makes the DAFOs). We got the first pair & they were HUGE. So, after trying them for several days and one PT appointment, a call was put in to Bill. They reordered the DAFOs with some mods. It then took another 2 weeks to get them. In all, the girl had been without braces for 7 weeks. The new ones aren't much better. She is having a hard time in them. All kinds of explanations have been given from too big to the shoes over them making them too tight to needing to learn how to walk with less support to needing to get restretched. She complains they hurt all the time. This is the child who never says a peep about pain. They are getting a few more days, the I am demanding a recast and going back to the tall ones.
Due to the lack of DAFOs, growth spurt and her CP, she is having lots of trouble doing long distance walking. She has a push chair for this reason. Yes, it is a Mac.laren Major. She sees this as a stroller. I am informed a million times a day that she is not a baby. She is starting to refuse to ride in the Major, but demanding to be carried or lifted into the grocery store cart. She is getting quite big. The specialist told me that we would need a wheelchair around the age of 6 but I put it out of my mind. "Not my child". Well, we do. I can't carry her & lift her up so high forever. She also can't be stuffed into a grocery cart much longer. She tries to rock herself to move the stroller & pushes off of stuff to get around. I called the specialist to get an appointment. We can't get in until January. Yes, you read that right. JANUARY. We need to get the ball rolling on a chair now. At least the nurse is kind, knows I am not a doofus & took pity on us. She is going to send the order to the insurance company & try to squeeze us into a seating clinic. Now, to convince the hubs that she NEEDS the chair. He lives in denial & doesn't think she needs any assistance.
School starts in a few weeks, no idea who her teacher is going to be. I am trying my best to prepare her. I don't think she realizes how long her day will be. I think she will have a hard time transitioning & has had quite a bit of regression this summer. As I posted before, her summer school is not going as well as last year. She also had an ESY in addition to the private place we put her. Lesson learned for me that she needs ESY. I know they will say she doesn't & has no regression. We will see.
Now, onto me.
Work has been super stressful. We have had some really sick people. In addition to the stress of that, there has been so many changes going on. Every day it is something new to learn & try to remember to complete. We have new residents (it is July) who don't know anything. I have also had someone to orient every single day on top of my assignment. I come home exhausted which leads me to the next topic.
Sleep. I have been having bouts of insomnia. I have also been having bouts of snoring where DH can't even sleep in the bed with me. I had a sleep study two weeks ago. I am waiting for the results. I will probably have to have another one to get a C.PAP machine. UGH. I hope it will help with my headaches, lower my blood pressure, help with my depression & maybe my exhaustion. They kept asking if I was tired all the time. My answer: I have a child who was born premature now with disabilities. I have been tired for SIX YEARS!!!!
DH brother had a heart bypass last week. He is only 42! He has to have another major surgery in six weeks for a bypass on the arteries in his legs. Very scary. I am terrified DH will end up the same way. He is only 33. He has been so worried about his brother. He lost his other brother in a terrible car accident about 18 years ago. He appears to be recovering well right now & even went home earlier than expected.
All of this stuff is giving me major panic attacks again. This is probably the reason for my insomnia as well. I can't find time to go back to the therapist. Maybe when the girl is in school I will. I don't know how much more medicine I can take. I don't want to take any more. I just want to know how to cope all the time. I feel like I flounder every day. When I look around me, it seems like everyone else has it all together. Even the SN parents I know in real life don't seem to be floundering or they are better at hiding it than me.
When does it ever end? I have said it before & I will say it again:
WHERE IS THE GIVE ME A BREAK LINE?
My apologies to all for my lack of posting on your blogs. I do try to keep up with you. I am praying for those who need prayin', thinking of those who need thoughts, laughing along with those who laugh & shedding tears for those who need water works. Thanks to you all for your comments & welcome to my new readers. It is amazing how cool the net is & how people from all over the globe want to hear about our little family. Much love to you all!
