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.
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