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.
Monday, September 26, 2011
New beginnings...
So it's been a while since I've had time and access to the internet to write. Our internet has been real spotty since getting it, hopefully it starts working better soon.
So we've moved into our new house (rental). Moving is so much work... So glad thats done, although I do still have 2 boxes to unpack, but I keep putting it off. It's just old stuff and paperwork so very boring to go through. The move has been good for us for several reasons, but is also more difficult for others. Let me clarify. We love being closer to everyone, and seeing family and friends. I've been watching Kira on Thursdays and I cherish that time with her and my girls. We've also been able to see more of Ella and hopefully she'll be able to come and spend some time with us as well. The girls love being with their cousins. Alexa seems to do so well when she is with them. Maybe she just gets more motivated or has an extra adrenaline push or something but she has been much improved as of late. Still more week than usual very low stamina and requiring more sleep, but she started taking things by mouth again. She's so happy.
The girls have come up with a new tradition and that is dance party before bed. Kaylie puts in one of her cd's then everyone dances till they cant dance no more. The girls loooove it! Our neighbors probably think we're crazy, but its fun, and I love seeing the girls so happy even if I do have to listen to Hannah Montanna... Alexa now request dance time by sign a few times a day. She gets so much joy from music and dancing. Sometimes she's to tired to do it herself so I just hold her and dance with her and the joy on her face is something I treasure.
Unfortunately Kevin has been staying at the old house during the week so he can commute to work. He worked 80 hours last week. We only got to see him for 1 day. I sure hope he finds a job around here soon. Kev has been taking the car so I'm left without one which is so difficult. I never realized how much I relied on my vehicle until I didnt have one. SImple things like running to the post office or picking up milk has become so much more dificult. I also miss my best friend. He lost his phone a few weeks ago so I havent even been able to talk to him. So even though we are closer to everyone we love I still feel lonely.
Alexa seems to be strengthening everyday. She is dealing with a cold right now but it isnt hitting her as hard as it could be. She still fights high fevers almost daily, and her heart rate has been very sporadic going as low as 40-50 which is very low for a baby. It seems like she is getting stronger with that as she is not setting off her alarms as frequently. She was getting to the point where she was setting her monitor off every 30 secs to a minute. She now sleeps in my room so I can respond more quickly to her alarms. It helps not having to run to her room every time. However Ive started incorporating her alarm into my dreams. She sees the new cardiologist soon he's the one who specializes in autonomic disorders. Hopefully that will give us some answers even if they are not the ones we want to hear.
We saw her GI doc recently and Ali had lost 2 lbs in 1 month he was very concerned and upped her feeding. He said that maybe her genetic disorders are affecting her ability to gain weight, but he's not giving up because she was able to gain weight in the beginning.
Alexa has her brain MRI on Friday. She'll be going under for the procedure and because of that she'll need to spend the night in the ICU. I'm hoping they let us go home the same day. When I asked the nurse if that would be at all possible. She said it depends on how she wakes up and that maybe if there are no issues she may be able to go home same day. Pray for that, because Alexa does poorly when she has to stay in the hospital. We decided to go ahead with the lumbar puncture (spinal tap) as the doctor feels like he might be able to tell a lot from it.
I have not uncovered my camera charger which really stinks I guess I'll have to buy another, like we have the money for that... But I hate not being able to capture all Alexa's moments. When I do I'll be sure to post some new pics. Alexa has grown a lot of hair and it is coming out in golden ringlets. When she stands in the light she looks like an angel with a halo behind her. Very cute but I'm havinga hard time learning how to deal with curly hair. Apparently brushing it dry, NOT a good idea! So if anyone has any good tips to deal with curly hair, please let me know as I'm getting a bit desperate.
I will try to post more frequently now that things are a little less hectic.
So we've moved into our new house (rental). Moving is so much work... So glad thats done, although I do still have 2 boxes to unpack, but I keep putting it off. It's just old stuff and paperwork so very boring to go through. The move has been good for us for several reasons, but is also more difficult for others. Let me clarify. We love being closer to everyone, and seeing family and friends. I've been watching Kira on Thursdays and I cherish that time with her and my girls. We've also been able to see more of Ella and hopefully she'll be able to come and spend some time with us as well. The girls love being with their cousins. Alexa seems to do so well when she is with them. Maybe she just gets more motivated or has an extra adrenaline push or something but she has been much improved as of late. Still more week than usual very low stamina and requiring more sleep, but she started taking things by mouth again. She's so happy.
The girls have come up with a new tradition and that is dance party before bed. Kaylie puts in one of her cd's then everyone dances till they cant dance no more. The girls loooove it! Our neighbors probably think we're crazy, but its fun, and I love seeing the girls so happy even if I do have to listen to Hannah Montanna... Alexa now request dance time by sign a few times a day. She gets so much joy from music and dancing. Sometimes she's to tired to do it herself so I just hold her and dance with her and the joy on her face is something I treasure.
Unfortunately Kevin has been staying at the old house during the week so he can commute to work. He worked 80 hours last week. We only got to see him for 1 day. I sure hope he finds a job around here soon. Kev has been taking the car so I'm left without one which is so difficult. I never realized how much I relied on my vehicle until I didnt have one. SImple things like running to the post office or picking up milk has become so much more dificult. I also miss my best friend. He lost his phone a few weeks ago so I havent even been able to talk to him. So even though we are closer to everyone we love I still feel lonely.
Alexa seems to be strengthening everyday. She is dealing with a cold right now but it isnt hitting her as hard as it could be. She still fights high fevers almost daily, and her heart rate has been very sporadic going as low as 40-50 which is very low for a baby. It seems like she is getting stronger with that as she is not setting off her alarms as frequently. She was getting to the point where she was setting her monitor off every 30 secs to a minute. She now sleeps in my room so I can respond more quickly to her alarms. It helps not having to run to her room every time. However Ive started incorporating her alarm into my dreams. She sees the new cardiologist soon he's the one who specializes in autonomic disorders. Hopefully that will give us some answers even if they are not the ones we want to hear.
We saw her GI doc recently and Ali had lost 2 lbs in 1 month he was very concerned and upped her feeding. He said that maybe her genetic disorders are affecting her ability to gain weight, but he's not giving up because she was able to gain weight in the beginning.
Alexa has her brain MRI on Friday. She'll be going under for the procedure and because of that she'll need to spend the night in the ICU. I'm hoping they let us go home the same day. When I asked the nurse if that would be at all possible. She said it depends on how she wakes up and that maybe if there are no issues she may be able to go home same day. Pray for that, because Alexa does poorly when she has to stay in the hospital. We decided to go ahead with the lumbar puncture (spinal tap) as the doctor feels like he might be able to tell a lot from it.
I have not uncovered my camera charger which really stinks I guess I'll have to buy another, like we have the money for that... But I hate not being able to capture all Alexa's moments. When I do I'll be sure to post some new pics. Alexa has grown a lot of hair and it is coming out in golden ringlets. When she stands in the light she looks like an angel with a halo behind her. Very cute but I'm havinga hard time learning how to deal with curly hair. Apparently brushing it dry, NOT a good idea! So if anyone has any good tips to deal with curly hair, please let me know as I'm getting a bit desperate.
I will try to post more frequently now that things are a little less hectic.
Tuesday, September 6, 2011
Packing up and saying goodbye...
This was written almost 2 weeks ago. We're now moved in, but are just getting internet now. Will update soon.
Since we've gotten home we have been so busy trying to pack up for our move this coming Saturday. It felt so wrong unpacking from our wonderful week only to have to wash everything and then repack it all. How depressing is that... It seems like I got hit with the flu or something , because I've had stomach upset since Saturday, and have been so fatigued. Could this not have come at a worse time. Try packing when every time you stand up you feel like you're either going to vomit or pass out. This will hopefully pass soon. It's so funny how literally kids take things because Kaylie must have heard Kevin and I talking about my flu. Tonight she came in and says to me it's to bad that thing flu into you and made you sick. lol I love my kid's take on things.
The flu has passed, but I think the emotional roller coaster we've been on in the last couple of weeks has finally caught up to me. I'm still very fatigued, but I think it comes more from an overall depression. Alexa seems to be doing better in most ways although still very weak, and this should make me happy right...? I am very happy to see her doing better, but there's something that is holding me back. I feel deflated. Seeing her so close to completely giving up, to having to say goodbye... I cry when I should be happy she's here. Everything feels so overwhelming, sometimes I feel so weak like I cant manage my own feelings anymore. How am I going to stay strong for my family, for my beautiful little girl? I have to stay strong, she can never see me give in, because I cant let her ever give in. This probably all sounds very jumbled and confusing, I'm trying to make sense of all the chaos in my brain right now.
Ive been writing this in parts over the last couple of days whenever I get a chance to sit and think. So if I seem like the flow of moods are out of whack its because each day I have some new perspective. Things seem a little better today... I was able to force myelf to do normal everday things. So silly I know, but I've been slipping back to that dark place, where I dont want to do anything, so this is a good step. Also I really needed to get some things done today as we're packing up tomorrow and leaving the next day. I did take the girls to the pottery painting place again today. We had to finish up some stuff we had started, and that was a nice activity. I find that its really soothing and relaxing. I'll have to find something like that once we move. I was able to talk to my sister tonight and that sort of helped with all the hopelessness I've been feeling. Sometimes you just need to get it out, even if it doesnt always make sense or come out the way you want it to. But after our talk I was able to feel better about things.
One day at a time, one moment at a time... Appreciate everything and take nothing for granted. The way she wrinkles her nose when she laughs, the way she points to me before crying whenever shes scared or hurt, the way her blonde curls bounce in the sunlight, her smell, and even her different cries, how she dances to music but stops as soon as she catches us watching her. The little things that make Alexa her are what I treasure most. I love that she has so much spirit. I hate that when we cuddle I can feel her bones and how floppy/ weak she's become. But I love that she'll turn around and give me a dazzling smile like I'm the best thing ever. She started saying her first official word "momma". How sweet is that. I know she knows what it means because she'll look right at me and you can see her really trying to put her mouth correctly and get it out. The funny thing is thats the only time I here the mmmm sound. So I feel extra special that she says it for me.
I'm trying to not focus so much on what our future may be but the now. It's just so hard. Especially at night when all the doubt I'm able to push away during our busy days comes crashing back. It doesnt help that night time is Alexa's worst time. She is still having apnea spiking random high fevers, and having a really hard time regulating her HR. We know this because her monitor is constantly going off when her HR drops. The scary thing about that is usually when her HR drops her O2 drops. At least thats the case when she's in hospital and she has her pulse oximeter on. We have one ordered for here but just havent been able to afford it, but I guess we'll have to find room in the budget to rent one, because it looks like she's really starting to need it. She is able to move much better, but is still very much weakened. I dont know if she'll get back what she lost, but her stamina is so low now. She needs a lot of assistance to get up from the floor, and is only able to walk very short distances before sitting. Also she's been sleeping about 20-22 hours a day. She needs the sleep, and is miserable without it, but it does make things difficult.
Alexa's neuromuscular doc wants to run some more tests... surprise, surprise. He would like to get an updated brain MRI which would be fine accept Alexa needs to be put under and everytime they do that we spend a nice night in the ICU because she doesnt do well with anasthesia. He would also like to do a lumbar punctar. Kevin is completely against this, and I get where he is coming from. When is enough enough? We have to weigh the good vs the bad of the whole picture. The lumbar punctar might be able to rule out an infection of some sort, but putting Alexa through anther scary painful procedure just seems wrong. Especially if there is little chance they will find anything out. This is all very rational to me, and I definately dont want to do things that would traumatize our special girl, but this scares me as well. I feel like we cant stop looking until we have answers. I realize that we probably arent going to have a magic cure or anything, but I'd just like to have a better understanding of things. The not knowing is killing me.
Since we've gotten home we have been so busy trying to pack up for our move this coming Saturday. It felt so wrong unpacking from our wonderful week only to have to wash everything and then repack it all. How depressing is that... It seems like I got hit with the flu or something , because I've had stomach upset since Saturday, and have been so fatigued. Could this not have come at a worse time. Try packing when every time you stand up you feel like you're either going to vomit or pass out. This will hopefully pass soon. It's so funny how literally kids take things because Kaylie must have heard Kevin and I talking about my flu. Tonight she came in and says to me it's to bad that thing flu into you and made you sick. lol I love my kid's take on things.
The flu has passed, but I think the emotional roller coaster we've been on in the last couple of weeks has finally caught up to me. I'm still very fatigued, but I think it comes more from an overall depression. Alexa seems to be doing better in most ways although still very weak, and this should make me happy right...? I am very happy to see her doing better, but there's something that is holding me back. I feel deflated. Seeing her so close to completely giving up, to having to say goodbye... I cry when I should be happy she's here. Everything feels so overwhelming, sometimes I feel so weak like I cant manage my own feelings anymore. How am I going to stay strong for my family, for my beautiful little girl? I have to stay strong, she can never see me give in, because I cant let her ever give in. This probably all sounds very jumbled and confusing, I'm trying to make sense of all the chaos in my brain right now.
Ive been writing this in parts over the last couple of days whenever I get a chance to sit and think. So if I seem like the flow of moods are out of whack its because each day I have some new perspective. Things seem a little better today... I was able to force myelf to do normal everday things. So silly I know, but I've been slipping back to that dark place, where I dont want to do anything, so this is a good step. Also I really needed to get some things done today as we're packing up tomorrow and leaving the next day. I did take the girls to the pottery painting place again today. We had to finish up some stuff we had started, and that was a nice activity. I find that its really soothing and relaxing. I'll have to find something like that once we move. I was able to talk to my sister tonight and that sort of helped with all the hopelessness I've been feeling. Sometimes you just need to get it out, even if it doesnt always make sense or come out the way you want it to. But after our talk I was able to feel better about things.
One day at a time, one moment at a time... Appreciate everything and take nothing for granted. The way she wrinkles her nose when she laughs, the way she points to me before crying whenever shes scared or hurt, the way her blonde curls bounce in the sunlight, her smell, and even her different cries, how she dances to music but stops as soon as she catches us watching her. The little things that make Alexa her are what I treasure most. I love that she has so much spirit. I hate that when we cuddle I can feel her bones and how floppy/ weak she's become. But I love that she'll turn around and give me a dazzling smile like I'm the best thing ever. She started saying her first official word "momma". How sweet is that. I know she knows what it means because she'll look right at me and you can see her really trying to put her mouth correctly and get it out. The funny thing is thats the only time I here the mmmm sound. So I feel extra special that she says it for me.
I'm trying to not focus so much on what our future may be but the now. It's just so hard. Especially at night when all the doubt I'm able to push away during our busy days comes crashing back. It doesnt help that night time is Alexa's worst time. She is still having apnea spiking random high fevers, and having a really hard time regulating her HR. We know this because her monitor is constantly going off when her HR drops. The scary thing about that is usually when her HR drops her O2 drops. At least thats the case when she's in hospital and she has her pulse oximeter on. We have one ordered for here but just havent been able to afford it, but I guess we'll have to find room in the budget to rent one, because it looks like she's really starting to need it. She is able to move much better, but is still very much weakened. I dont know if she'll get back what she lost, but her stamina is so low now. She needs a lot of assistance to get up from the floor, and is only able to walk very short distances before sitting. Also she's been sleeping about 20-22 hours a day. She needs the sleep, and is miserable without it, but it does make things difficult.
Alexa's neuromuscular doc wants to run some more tests... surprise, surprise. He would like to get an updated brain MRI which would be fine accept Alexa needs to be put under and everytime they do that we spend a nice night in the ICU because she doesnt do well with anasthesia. He would also like to do a lumbar punctar. Kevin is completely against this, and I get where he is coming from. When is enough enough? We have to weigh the good vs the bad of the whole picture. The lumbar punctar might be able to rule out an infection of some sort, but putting Alexa through anther scary painful procedure just seems wrong. Especially if there is little chance they will find anything out. This is all very rational to me, and I definately dont want to do things that would traumatize our special girl, but this scares me as well. I feel like we cant stop looking until we have answers. I realize that we probably arent going to have a magic cure or anything, but I'd just like to have a better understanding of things. The not knowing is killing me.
Saturday, August 13, 2011
Old fears, new fears... New hope
Last week I left off feeling really grim, and questioning whether Alexa had a seizure. The following day we were on our way to Childrens to get Alexa's dreadful tube changed, when I got a call back from her neuromuscular doc. Who insisted we take her into the ER immediately and to skip the appointment. Fortunately the ER staff made it possible for us to go to her appointment so we wouldnt miss it. (So hard to get last minute). Alexa was less than pleased. After a complete day wasted in the ER we were sent home with a diastat kit for more seizures. Alexa and Kaylie were both exhausted and we didnt get home till almost 10pm, no fun! The docs would have liked us to stay so they could monitor her... ummm... I can do that. Anyway we had a follow up with Alexa's neuromuscular doc that coming Monday.
I have to say that around this time Alexa started taking a turn for the worse. Her fevers kept spiking to unbelievable highs, with no reason, and sometimes the meds wouldnt even bring them down. She started getting soo weak. Not being able to stand at all and just laying there. She would just limply point her little finger to what she wanted. Either me or her bean bag chair, and limply laid there. At this point we thought we were losing her. It felt as though she were just fading away in front of me, her little spark of life gone. What can we do to make her better? We dont even completely understand whats wrong. How can I make her more comfortable? How do we say goodbye? I dont want this, I want her to continue being the miracle she is. I need her to show me through her own fight how great life really is. 
On Saturday we got some great news. A spot in the dream day camp had become available, yay! We just had to pack up and leave the next day. Now that was stressful! You may be thinking why would we add this when things seem so uncertain with Alexa. The only thing I can say is that the entire family needed this, and that we would do the same for Alexa there that we were doing at home. We just needed to be doing something, and if at anytime she seemed to be doing worse we were ready to take her home or to the hospital. 
What could I do, I still had to pick Kaylie and Kevin up. So we decided to take it hour by hour. If at anytime we needed to leave we would. We stayed at the camp all week, and although Alexa continues to spike these fevers, and have apnea at night. We slowly started seeing a little more life in her. Yesterday she had her best day in a really long time.
The camp is soo laid back, but perfect for us families that are constantly dealing with doctors appoinment, paperwork, insurance, medical supplies, early interventions, ect. They have tons of activities that are planned, if you're up for it great, if not thats ok too. This was perfect for us, because I would send Kaylie and Kevin off to an activity while Alexa slept, and I was able to get some peaceful reading in. I havent been able to read in so long. (Thanks Heather for the books you're letting me borrow, I finally finished one and just started a new one). Kaylie made a great friend, Kevin loved the fishing and turtle catching, we all made tye dyed tank tops and became the tye dye family (so corny, I know). My favorite part was the beach it was gorgeous. Alexa had the best time at the play/musical we went to yesterday. She was even dancing in the aisles! You have to understand this is the most movement we've seen in a long time, and she was so happy. I was starting to think we wouldnt see her smile ever again. After a nice nap she was able to go to the beach play in the sand and look for crabs in the water. She even tried some ice cream afterwards (first thing she put in her mouth in over a week). We all so desperately needed the joy this day was able to bring us. We have our Alexa back. Yes she is weaker and is doing worse in so many ways, but we got her smile back, and hopefully her will to keep fighting. 
Thursday, August 4, 2011
While you were sleeping...
I've been finding myself lately reverting back to my stalkerish days at the beginning of Alexa's life where I would just watch her sleep for hours. Thinking she was the most exciting amazing little thing, I'd ever seen. Not that the feelings have changed over the past 20 months it's just that things have become a little more routine. Lately though I'm bck to breathing in every single second of her life. I dont want to miss anything and want to treasure every moment we have with her. I feel like the horrible past couple of weeks have opened my eyes to the fragility of her life. I need to start preparing myself for the worse case scenario. I know that sounds morbid, but I've been so scared since this past weekend. I cant seem to rid my brain of the look in her eyes, when I realized she was just giving up. It was like she just wanted it all to end, because she was so tired of fighting, and I wouldnt let her. I look at her in her good moments and see how full of life she is, and its so decieving because it gives me that false sense of security that everything is going to be alright. It's not... There will be a time when I cant revive her or make her breathe. It's not a question of if but when. How do you prepare yourself for that? How can I make myself accept this? I dont want to ever have to accept this, it feels so unfair. 
We think Alexa may have had a seizure today, but arent sure. It doesnt really make sense though because she has never had a seizure that we know of in the past. She just lost all control of her body, and was completely unresponsive and her eyes were twitching back and forth with no focus. Kevin who is usually so calm was panicked, and I just reacted like this was a normal every day occurance, but am very shaken now. I keep replaying it in my mind. Shes also had quite a few apneic episodes, and is still requiring more frequent suctioning. We go tomorrow to get her GJtube changed which is so traumatic for her. Imagine being a tiny person in a world of giants, brought into a strange room with huge equipment and tons of giants in gowns and masks. Getting strapped to this huge table underneath this scary machine, and held down by 3 of those masked faces while they poke and prod at your already tender belly. She probably thinks she's their next meal. I know I would.
I was going to take the girls to the aquarium tomorrow because we're studying ocean life this week. Alexa just wont be able to physically manage it. She just gets so exhausted so easily these days, and we have to reserve all her energy for her nights. I just hate that I have to disappoint Kaylie again. I usually try not to tell her until the day of as we so frequently have to cancel plans. But ALexa's hearing therapist was here today and I mentioned it to her, Kaylie overheard getting soooo excited. We'll have to plan it for another time, I just dread taking Kaylie out to Boston for a long day at Childrens with that disappointment hanging over her head. She's a good girl, but she has had to take so much disappoinmtent in her young life. 
I wrote most of this last night in the midst of her apnea spells. With the morning light comes new perspective, and although we do feel that things have worsened it doesnt necessarily mean we will ever stop fighting and I need to keep the mindset that we will NOT lose her. After reading back over some of my recent posts I realize that I've been sounding so negative. I think that negative thought process impacts greatly the way I'm feeling lately, and I need to stop worrying so much. Alexa is still here and she is still fighting, she just had a weak moment.
Sunday, July 31, 2011
bad nights
We've been keeping real busy since getting home from the hospital, nothing to strenuous but just a lot of packing, ect. We had a yard sale this weekend and Kaylie had her first lemonade stand ever. She was sooo excited, and raked in $7.50, I think just enough to cover the supplies, lol. We got rid of a lot of junk but wish we could have gotten rid of more. We have the curbside alert with all sorts of free stuff, and the neighbors have been picking at it. Katy and Kira came to help out, and spend some QT time with us. That was really nice, and Alexa loves having her cousin nearby. 
Alexa has been having apnea on and off this past week, and she seems to be having more issues with maintaining a regular heartrate. It keeps dropping real low, and slowly bouncing back. Nothing we can really do about that, except sometimes I try to startle her a bit to get her heart going a bit faster. We're trying to get an appointment with the autoimmune specialist,they referred us to while inpatient, but that seems to be a bit more dificult than it should be. The secretary told me I would of had more luck just staying inpatient and having him consult on Alexa then. Apparently she's never had a kid inpatient before. They give you the option to leave you run with it! Poor kid doesnt need to stay a moment longer than absolutely necessary. Hopefully this week they'll be able to fit us in. We also changed her formula which is a prescription that gets sent over to Alexa's medical supply company. We have had nothing but problems with her supply company. Not sending things when they should, having to call and check on our orders constantly, and feeling like I have to watch everything they do. You would think that since they're dealing with medical life supporting equipment they would be a bit more professional... No such luck. Anyway this past week I literally spent about 4 hours total making sure we were able to get her formula. Basically doing their jobs for them, and finally on Friday (5 days after discharge) we got our formula. These things should not be such a hassle, we have enough on our plates. I shouldnt have to call each of Alexa's 18 specialist 3-4 times to get an appointment. I wish there was some way to streamline the whole process.
I think the excitement of having her cousin here and being outside in the heat today really affected our poor girl. She must of aspirated something at some point today, because she is having a horrible night. I moved her into our room because she's been needing suction every 15-20 min. I feel so bad for her. She hates being suctioned, but it gets to a point where you can see the relief in her eyes when she sees the suction coming to help her. She just gives up trying to get her thick secretions out, its like she loses all energy to even try to expel it and lays back to let it do what it will do. If it werent for me being right there and being able to suction her she would be dead! That's absolutely terrifying. I hate seeing her give up like that. It tears me up inside because I know how much of a fighter she really is. She also is having constant apnea, needing some vigerous stimulation. If we hadnt just gotten discharged from the hospital I'd bring her back. We need to be able to manage this on our own, I just get so scared that one of these times I'll be to late or unable to get her to breathe on her own. I just dont know what more I can do to make Alexa more comfortable, and make her nights a little better..
I can tell that lately shes been getting a bit weaker. Tonight while dealing with her secretions she had no neck control what so ever. Also she's been having more and more frequent times where she's stumbling around. I like to call her my little drunken bum when she gets like this. Its like she loses all her coordination. And she seems to be having a harder time getting herself up. Now it's not like this all the time, but I've just been seeing it a lot more lately. Also her ptosis (droopy eyes) have been much more significant. I can usually tell what sort of day she'll have by the droopiness of her eyes. So many people have commented on how tired she looks. I've stopped explaining that she always looks like that and will sometimes just smile or say ya she's probably ready for a nap. We were able to do a couple of fun activities this week. Other than follow up doctor appointments, and packing. I took the girls to this pottery painting place, and we each made our own plates. What a nice rainy day activity. I was able to get a great groupon on it and it was half off. I also recieved a 25 gift certificate to get pictures at walmart, so I took the girls in their tutu's and got pics. We were only able to get 2 pictures I didnt realize how expensive walmart pics could be, but hey it was free for us. The lady taking the pictures commented that the girls look so different and proceeded to ask me if they had the same father. umm lol.... If she had seen Kevin with the girls, there would be no denying Kaylie's paternity. Alexa... well she doesnt really look like either of us, but she is all ours.
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| Playing on her swing, I hope we have a tree to hang their favorite swings from |
Kaylie and I have been studying Egypt this week. I need to find a museum with some good Egyptian history, maybe with some mummy's and hieroglyphics or some nice ancient artifacts. She made an awesome sugar cube pyramid. I love doing these projects with her, and it gives us some great one on one time, which she so desperately craves.
I feel like I've been on a downward spiral lately, and I'm trying desperately not to go back to that place. I've just been feeling sorry for myself , and I need to cut it out. Yes, there have been many disappointments lately, but nothing we cant deal with. I just wish I knew the future so I could see where our lives were really going. It's so hard not knowing... I know, I know no one really knows how their life will be, it's just that I feel like I'm always waiting for the other shoe to drop.
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| The girls love their wagon! |
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