Sometimes when the world seems bleak or scary a little kindness can brighten it like a light going on in a storm. I know I know getting all metaphorical on you. But here's the thing I've come to realize. No matter how bad things seem for us at times the whole world doesnt stop like it feels it should. Everyone else keeps living their lives around us. Sometimes I forget that. I know that seems very self involved, but it's more we get so busy surviving in our own little bubble we forget to look outside it. Sometimes it takes just one act of kindness to bring everything into focus again. Let me explain...
Last week Kev left for work on Sunday night and only made it down the street before he realized he had a flat tire. So he hurried and put the spare tire on, which is not really a tire at all. It's supposed to get you to a tire shop so you can get a new one. However Kevin went to work across state, and worked all week. On Thursday he made it home he had taken vacation days so we could get to Ali's MRI the following day. Anyway that evening after he woke up he went to get a new tire put on. He went to a local place, but apparently they had been already closed an hour. Kevin asked if they k new of another place that might be open then as we had to drive to Boston at 4am for our daughter's appointment. The man looked at Kevin and said "Well we cant have you go like that". So he opened his shop even though he had already been closed an hour and was ready to go home, and changed our tire. He didnt know us, knew nothing of our situation but still opted to help. His kindness really touched me. Made me look past our own struggles and open my eyes to the world going on around me. Sometimes it's just the little things that make a difference. I'm going to try to remember that as I go about my day to day, and maybe I'll b able to repay that kindness to others in a kind of pay it forward or backward type thing.
Throughout this entire experience we have experienced more kindness and generousity than we can count. From big things to simple things like an I'm thinking of you email. We are so appreciative to it all. Sometimes I have a hard time accepting things or knowing how to say thank you, but I'm working on that. So thank you again to all who have made this experience a little easier.
Alexa had her MRI on Friday. Although we've done it many many times putting her under never gets any easier for her or me. She knew as soon as she saw the nurse in her blue scrubs that she was in for a long day. She wouldnt let anyone near her without a complete breakdown. It took 3 people plus me to hold her down while they tried to put an IV in. Thankfully the anasthesiologist agreed to wait until she was under to put in her IV in her overused veins. She still came back looking like a pin cushion, but at least she was asleep through most of it. Anyway they gave her a sedative before putting her under to calm her down. She fought that as well, but lets just say I got a few chuckles from her goofy behavior. At one point she started giggling like crazy pointing towards the cabinets, I dont know what she was seeing but it sure was funny. I told everyone we saw2 that we really wanted to go home that day if possible. They assured me theyd do everything to make that possible. For the most part we get good nurses but once in a while we get the ones who really should look at getting a job elsewhere and not with children. Her recovry nurse falls into that category. He knew we wanted to go home that day, but that didnt mean I didnt want her to be safe. When I went into recovery she was in just her diaper with no blanket on and freezing to the touch. I immediately said she's cold and needs a blanket. When she started waking up it was clear she needed suctioning and he refused. Said I should just pat on the back and let her get it up on her own. Ummm, not ok! He explained its better if she clears her lungs on her own, not if she has a hard time doing it when she isnt all drugged up! He just couldnt be bothered setting suction up. I ended up clearing some of the mucus with my finger. She was still really junky, but at least her airway was basically clear. Then her O2 kept dropping into the 70's (supposed to stay above 90). Instead of giving her oxygen he would just silence her alarms. Another nurse ended up coming over and giving her the mask at one point. Granted she would bounce back on her own but it would have been better if she had oxygen and didnt keeping dropping into the 70's. When the anasthesiologist came to check on her the nurse reported that everything was fine. I think the nurse just wanted to make sure she was discharged so he didnt have to go through the trouble of admitting her. Now dont get me wrong I didnt want her admitted, but I did want her well taken care of. Needless to say we did get discharged home that day, but I would not trust that nurse to take care of Alexa again, and if I felt she was ever in real danger would have asked to have them switched.
Alexa responded like she usually does and was miserable for a few days. Sleeping all the time she's up to 3 naps a day now. She now has a terrible cold, and was up most of the night last night needing to be suctioned. All mucussy (is that even a word?) and gross. She's stopped taking in much by mouth as well. Hopefully she bounces back quickly. The MRI results are back and her brain looks good, yay! So we've got the all clear to go ahead with the lumbar puncture. Fun times...
Kaylie started going to kids club last week, and loves it. Again another kindness as she gets a ride with a great family. I would love to find more activities for her but have to wait until Kevin gets a job closer to home so I'll have access to a car. I can tell she gets lonely for kids her own age.
I have been terrible at keeping this blog up to date lately. Seems like our internet problems were getting better for like a day and then are bad again. It's such a hassle to come on I just dont. ai''m so used to keeping up with things on the internet that I've been feeling rather isolated. The previous portion of this was written 2 weeks ago.
We got Alexa's results from her MRI and there is no change in her brain. Yay thats good news! We were worried about what we may find after her having that seizure. She has the all clear to get her lumbar puncture down now. Alexa has been ultra cranky lately. It seems I can never do anything right and poor thing gets so frustrated when she cant communicate clearly. She's been regressing with her signs and kind of jumbling them all together. I'm hoping this is just a faze. Her schedule is all wacky right now. We have about 3 good hours a day, the rest she's all miserable or she's sleeping. She is usually awake for only 6 hours a day now. That may seem like I have a lot of time off, but she is so sabsolutely needy during her time awake that I feel exhausted all the time. She does still need me throughout the night so that might explain some of my exhaustion. I dont mean to complain as she is not a bad kid she just has so much going on right now. When she is feeling good she is sooo much fun, and when she smiles I know how truly blessed I am,
Kev may have a new job with the IRS we wont know for sure for a few days but he has gotten pretty far in the application process. I guess we'll know soon enough. I still watch Kira every Thursday and love that time with her. She is such a funny kid. With Alexa I sometimes forget what its like feeding a normal kid as she just has little bits of food here and there. Kira well lets just say she eats the entire day. She'd rather be eating than playing. I love it because I missed out on that time with Alexa. They are so funny together, they dont actually play with eachother but do a lot of parallel play. Funny thing is I have both girls completely confused as to what my name truly is. When Kira's here I refer to myself as auntie Amy she calls me Ama. Well both of my girls call me momma or mommy so Kira thinks that my name, but Alexa hears me say Amy all day. By the end of the day she is usually calling me Mamey. lol.
I guess thats it for now, but I really will try to update more often.
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