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.
Monday, September 26, 2011
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.
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