It seems that part of the reason I've been neglecting to write as often may have something to do with my emotional state. Since moving here I do have to say that I have been dealing with a lot of depression and anxiety. For many reasons... and because of that I havent wanted to write because I promised myself I would be completely truthful when I started this blog, and knew that I couldnt be before.
The new move was supposed to fix everything... Of course that isnt how it worked. I seldom see my husband and the girls miss their daddy. I dont like being a single mom which is essentially what I am right now, but on top of that we're stuck in this house and its starting to feel like a prison. Sometimes the only adults I talk to are Alexa's doctors and her early interventions team. Also a week before we moved I found out I was pregnant. I was very excited but didnt want to tell anyone about it because of past issues. I dont know if it was because of the stress of the move or what but I miscarried 2 weeks after we moved in. It took a long time for my body to reject the pregnancy completely. At which time its like you're in limbo. The tests keep coming back positive but your bleeding and then that stops so you have hope and then it all starts up again. We weren't trying to have another baby at this time, but as soon as we thought we were, we were so excited, planning, looking at names, imagining our lives with another little joy. It was a devestating loss, they dont seem to get any easier. It's taken me this long to be able to talk about it.
The other huge issue going on right now is that we finally have a court date set for the dcf hearing so we can fight the charge of neglect against me. This has taken me back to a really negative place. I cant get it out of my head, I'm losing lots of sleep over this. The entire thing feels so unfair! We cant afford a lawyer so we're battling it out on our own. I'm bringing all of Alexa's discharge summary's all her doctor notes. Documentation of all her diagnosis, and a list of all the medical professionals so the court can see exactly what we do do for our daughter. Which is to help her survive. How do we prove to these people that they never had a case to begin with? How do we get our life back? No they are not involved in our lives anymore, but the charge is still there my name is on a registry with others who HAVE abused or neglected their children. I would do anything for my girls, anything! I feel that this taints my name and all the goodness that I have done for my kids. Alexa's illness has been unbelievably hard, but its something that just is and we are able to live with it because we have to. This DCF charge is fabricated and unjust and someone elses doing and does not have to be a part of our lives. My daughter is alive because I fight for her, but it feels like that is overshadowed by this taint they brought into my life. I dont want to say anymore right now because it just gets me all upset and anxious and I'm trying to avoid that right now.
No matter what goes on we still have our family. I always take comfort in knowing that despite the odds we still have the best loving family. Kaylie is this great kid who just bubbles over with her joy. You cant not be happy when she's around. She is such a great helper with things around the house but also with her baby sister who loves her dearly. Kaylie is Alexa's sunshine. Alexa is developing this little personality that borders on the hilarious. When she is feeling good she goes out of her way to play little tricks on people to make us laugh. SHe has a sweet side and doesnt want to see anything hurt, and doles out lots of love.
Today was a great Alexa day. She woke up happy, and then her daddy walked through the door. She shreiked with delight and clapped her hands, and literally ran (yes I said ran) to her daddy. Shortly after her speech therapist arrived and had a ton of fun new toys for her to play with. Alexa had so much energy! She was even able to make it through another appointment with the child developmentalist. This was the first time we met with the speech therapist and she really seems to know her stuff. Alexa even tried to immitiate her a few times without even knowing thats what she was doing. I dont know if I ever mentioned that recently we noted that Alexa had an attatched frenulum. That just means that the thing that connects to her gums and lip is connected to far down near her teeth. We were afraid that this was causing some of her speech delay. However even with this she should be able to make some sounds that she cant so it doesnt really explain everything. Anyway by the time Alexa's early intervention appointments were done she was exhausted. She had a VERY long nap, and was very cranky. It dowsnt matter it was soo worth it to see how happy she was in the morning.
Also we just found out today that Kevin got the IRS job. Yay! The only problem is that it is a huge pay cut. We're barely making ends meet right now. I dont know how we're going to manage this, but he needs to get his foot in the door... As soon as the court date is behind us I need to actively pursue getting Alexa a home nurse so I can go back to work to help with our overwhelming bills. I've just been having a hard time focusing on anything other than this stupid case.
I'd like to end this on a good note since I started it all depressing. I've now lost 22lbs since moving here. Yay!
Saturday, October 29, 2011
Wednesday, October 19, 2011
Random acts of kindness
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.
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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